Guest Post Hospice

Guest post by commenter PRESCOTT CACTUS. He’ll be around in comments to answer questions about his experience as a hospice volunteer.

I just got my 10 year pin for volunteering with a hospice organization. I’d like to share some of my experiences and if you have any questions please free to ask.

I started being a volunteer dedicated to a specific patient. The usual is four hours a week. Let the spouse have some time away for respite, do chores around their home or sometimes sit, listen and talk a little. We were taught to become a blank chalkboard and let the patient fill it.

My current duty is being a member of the “11th Hour team”. When a patient is deemed within 48 hours of dying the hospice provides an around the clock companion to the patient. You are there to provide comfort to the patient, his family and often the staff of the facility, if the patient has been in a long term care or nursing home for any length of time. Often the patient is alone, most friends are gone or unable to visit. Family is far away or wants to remember gramps the way they were. Sad shit actually. Our programs unofficial motto is “no one dies alone”.
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In between, I have shopped and delivered groceries, done one time visits to patients whose regular volunteer is ill or unable and have filled in doing office work. If your desire is to volunteer at a hospice, there is always something that most everyone can feel comfortable doing, including working in a thrift shop they run.

The most important thing I can share are that there are 2 kinds of hospice. Profit and not for profit. I donate my time to the not for profit. They do get reimbursed thru Medicare, but they are not a profit driven company. Being not for profit allowed my organization to explore and fill many great ideas that a for profit wouldn’t pursue, including the 11th Hour program. They have pet visits, a harp player who serenades patients in palliative care units. (PCU’s) . The difference doesn’t stop and start there. It’s a choice you may have to make and you should consider it an important one.

When is time to get hospice involved? A patient is eligible for hospice care if the natural progression of their disease likely ends their life within 6 months. Once certified as eligible for hospice, Medicare feels that extra care and cost should be available (no death panels – Thanks Oboma!) and that things like oxogen and a hospital bed are provided free of charge. At home visits by doctors, nurses and visitors begins along with having a dedicated social worker to help with loose ends

Sounds great, huh? The problem is that families and patients often don’t want to hear the truth and doctors often have a hard time telling it. Not many people are ready to admit I’m down to 6 months. Unfortunately, patients in their end stage of life provide doctors and hospitals with a shit-ton of money and profit. On average a patient is “on service for just 29 days when they could have been receiving special caring for 6 months.

If you get lucky and live a bit longer than 6 months, don’t worry, as they will reevaluate and can keep you in the program. You can get kicked out. FSM bless him, my Dad has done 180 degree turn-arounds twice and he was taken out of the program 4 years ago and again 2 years ago. He’s still with us and doing pretty good BTW !

Any questions about hospice ?

P.S. I’ve spent a lot of time just talking about hospice and haven’t really mentioned death and what you should know and be prepared for. Another time very soon perhaps ?

224 replies
  1. 1
    Prescott Cactus says:

    Also wanted to add: Hospice isn’t a place, it’s way of treating patients. There are many places hospices can be located. Hospitals have hospice wings. Hospice organizations (or companies) have free standing buildings, like PCU’s or Doc in the Box clinics. You can be in your own home, apartment, an independent, assisted, nursing, or memory care facility. They also provide hospice care for the homeless.

    and

    This came about because Adam Silverman suggested to a valued commenter that perhaps a friend would share some info and he would “sponsor” an article. Health care is in Richards’s wheelhouse so I brought this to him.

  2. 2
    Baud says:

    My campaign could have reached so many more people if I had been given a guest post.

  3. 3
    Prescott Cactus says:

    @Baud: If the natural progression of your campaign likely ends within 6 months, it may be eligible for hospice.

  4. 4
    Mnemosyne says:

    It generally seems to me that many of the problems around getting people into hospice aren’t with the patients themselves, but with the family members who aren’t willing to accept that their loved one’s death is going to happen sooner rather than later. My dad’s last few months probably would have been more comfortable in hospice care, but neither he nor my mom wanted to accept that.

  5. 5
    debbie says:

    It amazed me just how kind and gentle hospice was. I don’t know how you do that.

  6. 6
    Baud says:

    @Prescott Cactus:

    I plan to go out with a bang, not a slow decline.

    Our programs unofficial motto is “no one dies alone”.

    The only people I want around me when the time comes are any dogs I might have at the time.

  7. 7
    Elmo says:

    Question: have you ever heard of setting up hospice care for a pt while still telling the pt and her family that “all is well, we anticipate a full recovery,” etc?

    Because that’s what happened with my mom. My dad kept on working and didn’t take much time off during her last few months, because the docs were telling us she would live a long life. But they set up a hospice nurse to “help in her recovery.”

    That was in September. By Christmas she was completely paralyzed and that’s when they told us the cancer had come back and she had a few weeks left. She died January 14, 1991.

    I’m still not over the hate and rage.

    Edit to add: To be clear, not against the hospice people! The doctors were the ones lying to us, not the nurse.

  8. 8
    Prescott Cactus says:

    @Mnemosyne: The bad news it takes only one unwilling party of the doctor / patient / spouse – partner / family “rectangle” to derail entrance into a hospice program.

  9. 9
    Mike J says:

    You can get kicked out. FSM bless him, my Dad has done 180 degree turn-arounds twice and he was taken out of the program 4 years ago and again 2 years ago. He’s still with us and doing pretty good BTW !

    I think this is something more people need to hear. Some of the reluctance to use hospice is based on the misguided idea that it means “giving up” and nothing else will be done for you. Too many people mistake it for an ice floe.

  10. 10
    Nelle says:

    I ran the bereavement group for the hospice where I lived in New Zealand. I met, in a group setting, with family survivors (usually spouses, but sometimes parents) once a month to talk about the adjustments. Laughter, tears, anger, loneliness – it was all there. One group spun off and is still meeting for coffee every week. Most people that came, came for about a year.

    The hospice headquarters was a bright, sunny place. They had crafts and lunches, activities for kids. Over and over, I heard people asking themselves, why did I wait so long? These people were godsends along the journey.

    My sister, who is 67, is a hospice nurse who intended to work until she was 70. But she just got off of six days in a row, one of which was 10 hours and one was 12 hours. Then she comes home to help her disabled husband. She will retire this year sometime – they will be losing a great nurse, one who found hospice nursing to be her right calling.

  11. 11
    Prescott Cactus says:

    @debbie: My Mom passed in 1990 in Chicago. By nothing more than coincedence I was at her side. They had given her a month to get “her life in order”. When I moved to AZ I learned about hospice programs (aging population) and signed up.

  12. 12
    Prescott Cactus says:

    @Baud:

    I plan to go out with a bang, not a slow decline.

    We all do.

    The only people I want around me when the time comes are any dogs I might have at the time.

    They would do that for you. It’s a neat place to volunteer.

  13. 13
    Wag says:

    A really nice discussion of hospice from a non-medical point of view. Hospice can be a godsend for families facing a terminal illness, and it’s great to hear from a volunteer with the depth of experience that you bring to the subject. Thanks for sharing your story.

  14. 14
    Eljai says:

    Thanks for posting. How long is the training for being a hospice volunteer? Also, what motivated you to become a volunteer?

    ETA, saw you already answered the second question. Thx!

  15. 15
    Prescott Cactus says:

    @Mike J: You do give up aggressive treatments, but not living.

    One popular myth is that you can have no surgeries or chemo. It’s wrong. If any type of medicine / surgery will make you more comfortable (removing a tumor from say the windpipe), thay are fine with that.

    You can also say, “I want out ! Yesterday ! ” They will, no problem.

  16. 16
    Ruckus says:

    @Mnemosyne:
    When my sister was terminal with cancer she was given two options. Hospice 7-10 days, they make you as comfortable as possible. Chemo for 2-4 months followed by hospice for 7-10 days. She chose to forgo the very aggressive chemo. But the part that astounded me were the number of friends and family members that could not grasp the concept and argued that she should not be allowed to make this decision. I had to argue that she is of sound mind and that it is her life and she gets to make this decision, just as they should when it’s their time. How many of us even get the choice?

  17. 17
    Baud says:

    @Prescott Cactus:

    We all do.

    Yeah, I also plan to win the lottery.

    They would do that for you.

    Now that’s service.

  18. 18
    Prescott Cactus says:

    @Elmo:

    Question: have you ever heard of setting up hospice care for a pt while still telling the pt and her family that “all is well, we anticipate a full recovery,” etc?

    Elmo,

    Hospice care should be started with the patients knowledge. A lot of times you sign tons of paperwork when you leave a hospital. One of those papers may have been the consent to begin hospice care. The patient benefits greatly from the extra care provided. The hospital may benefit if they run / own the hospice they just admitted you to.

    I’m sorry this happened to you and no offense was taken. You and your family were treated without the respect you deserved at a very difficult time.

    Edited to Add: I re-read your reply. 1991 was a long time ago. I hadn’t even heard of hospice and it was fairly normal for the medical profession to basically lie to patients about their eventual outcome and prognosis. Doesn’t make it right though.

  19. 19
    Ruckus says:

    @Elmo:
    When my grandfather had cancer his second wife would not allow the Dr to tell him, and especially not to tell him he was dying with only a short time to go. My mom, his DIL, told him as she was pissed off that this was kept from him. He was pissed off as well that someone would think that a grown man could not handle death. Considering how long ago this was, most people were pretty acquainted with death, he certainly was.

  20. 20
    WaterGirl says:

    @Baud: For real?

  21. 21
    donnah says:

    Our Hospice situation was a positive one. My elderly father had terminal cancer which had spread throughout his body and into his brain. Our local hospice offered in home care and sent a caregiver to interview us and meet Dad. They did a quick evaluation and offered full care and attention, as well as providing options we never thought about, like having a representative from the Marines come in to chat with Dad and set up an honor service when he passed.

    His in-home care was short, however, and he was transferred to the Hospice facility. We stayed with him and he received good care and attention until he passed a few weeks later, on New Year’s Eve.

    We will always be grateful for their kindness and care.

  22. 22
    Prescott Cactus says:

    @Wag: You are welcome Wag. Honestly, I didn’t know if anyone would be interested. I contacted Richard M. yesterday morning and whipped this together before the afternoon. A little nervous to tell you the truth. . .

  23. 23
    WaterGirl says:

    @Elmo:

    Because that’s what happened with my mom. My dad kept on working and didn’t take much time off during her last few months, because the docs were telling us she would live a long life. But they set up a hospice nurse to “help in her recovery.”

    Wow. I’m enraged just reading what you wrote. They had no right to do that. Couldn’t a doctor lose their licenses for doing something like that? We declined a lawsuit after my mom died even though we were told there was cause. Who wants to be tied up for years, being angry? But in your cause I might seriously think about contacting the state medical review board or something like that. I’m so sorry, that’s just awful.

    edit: I hadn’t caught that it was 1991.

  24. 24
    eclare says:

    A coworker’s mother was admitted to hospice and died the next day. Not how hospice is supposed to work. Can’t tell you how many agonizing phone calls I overheard dealing with her mother’s declining mental and physical health. Coworker ended up going on leave to get mental health treatment. Can’t help but think earlier hospice might have alleviated that.

  25. 25
    gogol's wife says:

    @Prescott Cactus:
    This is such a great feature. I have to go out in a few minutes and don’t have time to read/comment, but please keep this up! People really need to talk about these things.

  26. 26
  27. 27
    Prescott Cactus says:

    @Eljai: Eljai,

    Thanks for posting. How long is the training for being a hospice volunteer?

    To be a dedicated volunteer to a specific patient is about 32 to 40 hours IIRC. To be a member of the 11th hour program you have to have been working with patients for at least a year, get very good reviews from your volunteer co-ordinator and than another 32 hours.

    Your first time in the field with a dying patient is with the program leader who makes sure you can handle it and don’t get the “willies”. My initial patient died within 2 hours of my showing up. She still reminds me of that.

  28. 28
    debbie says:

    @Elmo:

    I will say that I wish the hospice aides were more direct with me. I wasn’t in denial, but I didn’t realize how close to death my mother was. I still feel badly she was alone most of her last day.

  29. 29
    Prescott Cactus says:

    @Ruckus:

    I had to argue that she is of sound mind and that it is her life and she gets to make this decision, just as they should when it’s their time. How many of us even get the choice?

    Ruckus,

    Thankfully she had you as an advocate. That’s another thing volunteers do is advocate for the patient. We are told to “push things up the ladder” if a patients needs anything. In 11th Hour it’s often that a patient is showing signs of stress or discomfort.

    All the 11th hour patients are “non-responsive” when I visit them. You hold their hand, whisper that “everything is all right” and it’s OK to let go”. Sometimes you read scripture or prayers to them. Their wishes!

  30. 30
    greengoblin says:

    @Mnemosyne: This was my sister when it came time for our Pa. The VA facility where he was starting talking to her about hospice care and she texted me that she walked out “not digging it.” She came around quickly though, and accepted the service for him. She was glad she did.

  31. 31
    piratedan says:

    many of you were here with me while I was performing the end of life care for my mother and her 2nd husband a few years back. I can attest to the benefits of hospice but please don’t consider it as your work is done. It is a respite. They do many of the personal care items that are so difficult to do as a child (depending upon your hangups I suppose), things like bathing, hair care, personal grooming and just simple conversation. They give you a break and in a way, their very presence helps you deal with what is coming. It is a very welcome support system and it is drama free (well, they’re drama free, family matters notwithstanding).

    I wholeheartedly endorse the hospice experience and even more so, having the difficult conversations with family that have to deal with the reality. In my case, I was on the “front-lines” so to speak, so my sacrifice and words carried weight and I did what needed to be done to keep the siblings and relations up to date. Communication is essential, both in keeping tabs with family and understanding what your loved one wants. In many cases, it’s simply a smiling face that isn’t wracked with pain or the baggage of knowing someone their entire lives. A simple acceptance of where you are and what lies ahead.

    It’s mature at a time when some of us want to revert to the comfort of infancy…

  32. 32
    Prescott Cactus says:

    @Baud:

    Now that’s service.

    They would put them right on your bed and let them lick your face as you depart this world. That would be an easy request.

  33. 33
    Baud says:

    @Prescott Cactus: Aww. I’m tearing up now.

  34. 34
    April says:

    Regarding comments about how care has changed a lot since the early 90s, what doctors used to do could be horrendous. My mother’s breast cancer returned in 1974 and the docs convinced my dad that mom was simply pining for the attention her two years prior mastectomy gave her. They had dad sign her into a state insane asylum over it! My hero big brother (who has the same name as my dad) got his official drivers license in the mail and drove to the asylum and signed her out that same day. She found a doctor to believe her, they looked inside and found cancer and she died three months later. Really a horror show, even after all the years have passed and even tho I was so little when it happened. I think if mom had had hospice care the last few months the whole family could have been saved decades of nightmares, not to mention mom being more comforted in her last weeks.

    Heavy stuff. I am comforted to know that there are people and places out there like you, Prescott Cactus. Bless you.

  35. 35
    WaterGirl says:

    @Baud: Surprised. Are you a very private person?

  36. 36
    Prescott Cactus says:

    @donnah: donnah,

    I’m glad your Dad received wonderful treatment. Having volunteers from branches of the service the patient served on call makes me think the organization you choose was top notch.

    Losing a loved one is never easy. Having any burden, big or small removed, makes it easier on the family.

  37. 37
    WaterGirl says:

    @Prescott Cactus: You just never know about non-responsive. They told me my dad was non-responsive when I got to the hospital, but when I said I love you, he squeezed my hand 3 times to say I love you back to me. By the time my sisters got there, he truly was non-responsive.

  38. 38
    WaterGirl says:

    deleted

  39. 39
    StringOnAStick says:

    My father in law just entered hospice yesterday. He’s been confined to an assisted living facility for about 8 months now after a series of strokes left him unable to walk, use his left side, etc. He hates being in a “home” but is too debilitated to be cared for at his son’s home (my husband’s brother), and that son is currently fighting cancer himself. That son and his girlfriend have been the front-line people for years because he used to live with them and we live many states away. We will be on our way there shortly. The assisted living caretakers are who asked my BIL if they could call in hospice, and my BIL is still in denial, but I’ve been able to be clear with his girlfriend that there are no more battles to be fought here, no more painful procedures to put him through. This is all about his being comfortable and letting him pass as peacefully as a guy with his mental issues can. His senility and long term history of severe anxiety issues means we are not telling him he is in hospice; if he knew he would climb out of his skin with anxiety and what good would that do him now?

    Please read “Being Mortal – Medicine and What Matters in the End” by Dr. Atul Gawande. Such a humane and important book about this whole topic; we are so glad a friend suggested it to us after telling us how much it helped him with the decline and loss of his father. These are things we should all think about before a big event becomes all too real in our lives.

    Thanks for writing about this Prescott Cactus, and for being a volunteer.

  40. 40
    Prescott Cactus says:

    @April: Thanks April.

    My Mom had about the same prognosis. Breast CA – mastectomy and 2 years later repeat. In 1985, a year later it went into her liver and they gave her 3 months. Her initial thoughts went along the lines of ” I’ll never take chemo”. She wound up on a new (at the time) wonder drug called tamoxifen. She had 5 long wonderful years of side effect free life.

    Then it quit working. . . Back to 3 months

  41. 41
    Baud says:

    @WaterGirl:

    A little private. A little sociopathic. I don’t trust people to treat me right and I’d prefer not to have to worry about it in my final moments. Not that I have much control over it. Both of my parents were alone when they died, and I don’t think either of them wanted to be. C’est la vie … et la mort.

  42. 42
    PurpleGirl says:

    @Prescott Cactus: I congratulate you on your service to your community. I learned about hospice care when I took courses in recreational therapy in the late 1970s for a Masters degree.

    My dear college friend who I called “weird twin” (born same day, same year) died in hospice care. She’d been fighting breast cancer, and had seemingly beat it but they discovered it had spread to her lungs and brain. Her mother and her sisters wanted her to keep doing chemo. She tried one last chemo regime but when that stopped working she arranged to enter hospice care and wanted no visitors or phone calls — she didn’t want to fight with her family any more. (I agreed with that choice — after all her mother once tried to ban her from coming home after her father died in a car crash and had done other things to her over the years.)

    Her family just could not accept that she was dying, would die. She had become the problem solver in the family. She had even kept helping her mother financially to the end. And for them to keep badgering her I thought was disgusting. At least the hospice kept her wishes and she died peacefully in a coma.

  43. 43
    Prescott Cactus says:

    @WaterGirl: I always introduce myself to the patient when I enter the room. Family too of course, but usually it’s just the patient. Whisper in their ear. “I’m going to be with you for a little while tonight”.

    We get a heads up, face to face patient update from the previous volunteer so we kind of know what to expect.

    I’m glad you were able to share a few moments with your father before he became non responsive. It’s important. We are instructed and learn that hearing is the last sense to fail. Whispering works because they may have been hard of hearing before and it made sense to me.

  44. 44
    WaterGirl says:

    @Baud: Sorry to hear that. I’d like to think that anyone who loved you would treat you right. Maybe it’s enough to acknowledge that we have so little control over many of the things that really matter.

  45. 45
    J R in WV says:

    @Prescott Cactus:

    LOL, really!!! Thanks!

    You have real talent as a straight man… in the comedy line!

  46. 46
    Gravenstone says:

    No questions. I just wanted to thank you and all the others like you who help individuals and families that need hospice service. My mother was fortunate enough to be able to use in-home hospice care. While I was her primary care giver in the final weeks of her life, both the visiting nurses and the aid who helped with her bathing were invaluable to us. Thank you all, again.

  47. 47
    Steeplejack (phone) says:

    @Baud, @Prescott Cactus:

    Best one-two LOL I can remember. Kudos.

  48. 48
    Florida Frog says:

    Thank you for posting this. My mom died from cancer and her passing was made much more peaceful by the wonderful, compassionate hospice care she received. The volunteers helped us by explaining clearly what was happening and what we could expect in her last days. Unfortunately Mr. Frog’s mom was diagnosed with terminal liver/stomach cancer just in the midst of the Death Panels hysteria. She wasn’t a stupid woman but she was frightened and none of us was able to convince her to complete an advance medical directive or agree to hospice care. Her oncologist followed her down the hall pleading with her to make the decisions only she should make. Her reply was that this was a plot by Obama to kill the old people. She died within a few weeks. Her husband of 65 years was not at all prepared and the whole family was in much worse shape than necessary. I am certain that the honest compassion of a hospice worker would have eased every one’s pain. Curse you forever, Fox News!

  49. 49
    WaterGirl says:

    @Prescott Cactus: Thank you. I’m glad you are able to do this work, and do it well. I haven’t been able to make peace with the fact that death is inevitable. I couldn’t even begin to do what you and others do with hospice care, and it makes me even more grateful that there are angels out there who can.

  50. 50
    StringOnAStick says:

    I’m going to let a lot of this out since my husband’s family and I are right in the middle of this right now.I don’t comment much here but I do read a lot of comments.

    Hospice has changed so much. I am sure my Father in law’s fear over dying can be linked to how horribly his wife died of breast-then-everything cancer in the 1970’s. My husband’s last moments with his mother were awful and traumatic for everyone since that was still the era of “cancer is a war and we never give up”. Part of why we aren’t telling him he is in hospice care is because of all the fear and guilt he has carried from that experience 40 years ago, and his lifetime of alcoholism and chronic, severe depression. We just want some peace for him, something that has eluded him his whole life.

  51. 51
    Prescott Cactus says:

    @piratedan:

    many of you were here with me while I was performing the end of life care for my mother

    piratedan,

    I wasn’t, but you seem to have covered all the bases well. Communication is very important. A patient who is dying can’t take every call and see every person who wants to visit. They need a gatekeeper, which you did well. It helps if someone in the family “takes point” or control with the wishes and the patients consent. Dying is hard enough without having to orchestrate a distraught family.

    Respite care is also available with “better” hospices. If the patient is at home, they will transfer them to a PCU and let them stay for 3 or 4 days. Giving all at home a much needed rest. Family / caregiver burnout is one of the worst side effects of family or friends dying. It can drag down a healthy person and make and bring an ill one to their knees.

    You covered some very important points and it sounds like it was a blessing you were there.

  52. 52
    J R in WV says:

    Prescott,

    Seriously, my Dad was spending winters in Houston TX, for the warmer and because my brother and his kids were there too. One routine Dr appointment had odd blood test results, and after referrals he was diagnosed with CMML leukemia, a rare one. Some time later it went acute, and he entered treatment at M D Anderson Cancer Center downtown.

    He had great results in a clinical trial that they tried on him -I suspect they didn’t have any idea it would really help as he was the only patient with that diagnosis to enter the trial. Some years later, though, he was having problems from other chemo treatment side effects, and decided he was done with all that.

    His Dr managing his treatment was also the medical director for the local non-profit hospice, and their care was wonderful. His RN was very caring, and the folks at the assisted living center he had moved to were also really good. I was able to spend weeks down there as his end approached, thanks to the family leave act and a good state agency I worked for.

    You all do great work, and we are all grateful for what you do.

    Thanks, and keep up the good work as you can!

    JR in WV
    and sometimes in AZ

  53. 53
    Prescott Cactus says:

    @debbie: debbie,

    PLEASE don’t have any regrets. Impending death is not easy to speak about, especially in the USA. We as a society are afraid about being around death. In the 60’s a lot of people died in their homes. Now most die away from home.

    Being alone gives the patient time to prepare for whatever is next. If you were there, it would have been of comfort to you. You weren’t and it’s OK. Your Mom doesn’t love you one ounce less because you were not in her presence for a few hours.

    Peace be with you. Really

  54. 54
    JPL says:

    @Prescott Cactus: Thank you for your volunteer work, and thanks to President Obama, the program was extended. Since we are all mortal, it’s important to make sure that wills are kept up to date.

  55. 55
    J R in WV says:

    @StringOnAStick:

    Best of luck with all that. Feel free to express yourself here, just as you have today. For all the snark, most all of us Balloon-Juicers are pretty caring people.

    You are not alone!

    Hang in there!

  56. 56
    eemom says:

    Joining in the thanks to Prescott and the many like him.

    What a sad and beautiful thread.

    @WaterGirl:

    I haven’t been able to make peace with the fact that death is inevitable.

    Me either.

  57. 57
    Prescott Cactus says:

    @Nelle: Nelle, I could never get in front of a group and run a meeting like that. I know I would start crying.

    People who work in the hospice business truly have a special place in my heart. I just volunteer once in a while. Dedicating your life, your work is very, very special.

    I hope all works out well for you and yours !

  58. 58
    Baud says:

    @WaterGirl: No need to be sorry. Oftentimes love simply isn’t enough. It’s just reality. Both my parents died relatively quickly, so that’s something to look forward to.

  59. 59
    Prescott Cactus says:

    @eclare: Can’t help but think earlier hospice might have alleviated that.

    So true. 6 months leaves a very big window of entry. You can always leave hospice. You can always jump back in. You can switch hospice providers if you are not happy with the care you are receiving.

  60. 60
    Ruckus says:

    @Prescott Cactus:
    When my dad was in hospice they told us not to hold him. This is because his body was shutting down and basically falling apart (internally). They didn’t want us to suffer any more than necessary. But he died in my arms and no one came in nor ever said a word.
    Dying is a strange time for most of us. We have spent a lifetime (of whatever length) trying not to and now that’s all that’s left. Some of us have fought long and hard to defeat a disease and finally lost that battle, some of us get caught in bad situations like car accidents and just can’t hang on any longer. I’ve never understood why there isn’t more comprehension that life ends at some point, we don’t have to celebrate it but we should at least understand that it happens to all of us and make it as easy as possible when that time arrives.

  61. 61
    Prescott Cactus says:

    @gogol’s wife: I’ll keep up with this for a while and will in fact check back over the next few days.

    I don’t know if they lock comments after a certain amount of time. This is new to me !

  62. 62
    WaterGirl says:

    @Baud: Did you see Grumpy Old Men? My sisters were horrified that I would rent that movie one christmas when we were at my dad’s, and they held their breath while we watched it until we got to the “Lucky Bastard!” line and my dad laughed out loud.

    A few months later, my dad’s best friend died of a heart attack while brushing snow off his car in a big snowstorm. My dad, of course, said “lucky bastard”. Sadly, my dad had long months of ill health, glad yours went relatively quickly. I know we don’t have favorites, but if we did, you would be my favorite commenter at BJ, so I am sending a hug your way whether you want it or not. You’re in some great company; we have lots of wonderful people in our little community of snarling jackals.

  63. 63
    Prescott Cactus says:

    @StringOnAStick:

    I’m going to let a lot of this out since my husband’s family and I are right in the middle of this right now.

    In a case like this, I can certainly see why the patient wasn’t / shouldn’t be given a heads up as it is clearly not in his best interests to know.

    All rules are made to be broken. I got a finger gently wagged in my face for spending a few extra hours with a patient while their family drove in from Oklahoma.

    What’s best for the patient should be the gold standard.

  64. 64
    Gelfling 545 says:

    @Ruckus: my daughters just went through this with their father only it was the personnel at the hospital he was taken to (he fell & the neighbor upstairs called the ambulance or he’d never have gone there to begin with). His death was not unexpected and and he had made his wishes clear in writing but they still acted as if my daughters were terrible people. Fortunately he regained consciousness briefly and was able to indicate that he essentially wanted everybody to get the f… away from him. Perhaps this was because this was a small far-from-full service hospital in a small town in the NY Southern tier. Perhaps, (I wonder cynically) it was because he had excellent medical insurance. Still, they kept urging them to ignore his wishes since he might just be “depressed”.

  65. 65
    Mart says:

    Great respect for you Mr. Cactus. A doctor was screaming at my sister (who called me crying at 3 in the morning) that she was killing our father if she did not let him intervene. Our father had written instructions for no extraordinary life saving efforts after we went through my mothers horribly extended cancer death. I got on the phone and he simply awful – even using the religious card. After consulting we told him we were going to follow our father’s wishes. My Dad passed later that morning, no regrets. With the severe pain and lots of other not nice stuff he was going through, his death was a release and relief.

    After actually being on one, I detested folks like Sarah Palin screeching about death panels, just sending a horrible misguided message to the religious rubes.

  66. 66
    Baud says:

    @WaterGirl:

    I haven’t seen that movie.

    if we did, you would be my favorite commenter at BJ, so I am sending a hug your way whether you want it or not.

    I’m always up for an electronic hug. And FWIW, I would be my favorite commenter too.

    ;-)

  67. 67
    amygdala says:

    Thank you for this post and for serving as a hospice volunteer. There is at least one study demonstrating that patients in hospice care live longer (as well as more comfortably) than those who are not. When I would talk to patients and families about hospice, they often worried about being alone. I think our health care system is so patchy and fragmented that it’s inconceivable to many folks that in hospice, there’s always a number to call to summon help quickly. Hospice was a blessing when my Mom was dying. If I don’t go quietly in my sleep, I hope it’s with the support, skill, and compassion of hospice.

  68. 68
    RSA says:

    @Prescott Cactus:

    All the 11th hour patients are “non-responsive” when I visit them. You hold their hand, whisper that “everything is all right” and it’s OK to let go”. Sometimes you read scripture or prayers to them. Their wishes!

    This brought tears to my eyes. I admire you for what you do. Thanks.

  69. 69
    Davebo says:

    @J R in WV: Houston is a great place to get sick.

    MD Anderson is consistently rated either #1 or #2 in the country and the entire medical center is world class.
    Health care is the #2 industry in the city behind energy with people coming from all over the world seeking treatment.

    But it’s actually just south of Downtown about 6 miles.

  70. 70
    Prescott Cactus says:

    @StringOnAStick:

    Please read “Being Mortal – Medicine and What Matters in the End” by Dr. Atul Gawande. Such a humane and important book about this whole topic; we are so glad a friend suggested it to us after telling us how much it helped him with the decline and loss of his father. These are things we should all think about before a big event becomes all too real in our lives.

    Thanks for writing about this Prescott Cactus, and for being a volunteer.

    It sounds like your family has a lot in front of it right now. Please remember small steps. Do what you can, when you can. Tomorrow will always show up with a rising Sun. I hope and pray that things work so that all wounds heal and everyones suffering is minimal.

    I promise to read:

    “Being Mortal – Medicine and What Matters in the End” by Dr. Atul Gawande

    I have a pretty big collection of books on dying. It’s so important to have these conversations with family before the time is gone or it’s too late.

    Thank you and be strong and stay healthy.

  71. 71
    EdinNJ says:

    @Elmo:

    Too long a story to share here but this is exactly my experience. My father was placed in hospice on the suggestion of his oncologist. Was described to us as a way to get him stabilized after a stint in rehab for a non-cancer related health issue. The problem is that the hospice nurse refused to treat any of his cancer-related symptoms because by definition there is no treatment offered to hospice patients. Long story short, by the time we got him out and to an ER, he was beyond help and passed away in a hospice facility in Feb. at age 73. He had lived 11 years with lung cancer with only maintenance chemo, and clean scans until a serious fall in November. Lived by himself, fully independent. We still don’t know and never will know what went sideways in those 3 months. Still shocked he’s gone.

  72. 72
    Ruckus says:

    @Gelfling 545:
    Still, they kept urging them to ignore his wishes since he might just be “depressed”.
    I feel like screaming about this.
    We all die. Every living thing. We have a normal lifespan, and we have disease, and we have accidents. Insects probably don’t expect to be stepped on, but it happens. But every living thing dies. Should we do so with love and dignity or with only pain and regret? I’ll choose door number one please. And if we can’t have that love could we at least have the dignity? That’s really what we are talking about here. There is dignity in living well and we should respect that and treat death as part of life, because it is. It isn’t something most of us want but at some time we are either ready for it or we keep trying till the end. Neither of those is the wrong way, it just is, but our lack of acceptance of the plain fact that every living thing dies and that we can make it hurt a bit less, both physically and emotionally is just wrong. We don’t even need to find someone or something to blame for this, we just need to do better at understanding it.

  73. 73
    a hip hop artist from Idaho (fka Bella Q) says:

    Thank you both for this post. Hospice is a g*send for the folks nearing expiration and for families as well. Both my folks left from their own bedroom, with hospice care. I understand some family members can be resistant, though I was all for it, and thankful they got it.

    Atul Gawande wrote eloquently (as always) on the topic at the New Yorker, with an explanation that should be required reading for any who have questions about hospice care.

    I’m grateful for your generous volunteer work.

  74. 74
    Aleta says:

    I wrote a comment about my mother’s death in hospital hospice, but it turned out pretty grim. My aunt died in home hospice; all other things about their situations were different too of course. What I learned is that different hospices can be very different in their practices. One difference is whether they use no food, no water (in my mother’s case) or no food, yes water (my aunt’s case). I think it is an important difference. This might not be the kind of question you had in mind, PCactus, but do you (or anyone) have any comment or links about different hospices’ decisions about water vs no-water?

  75. 75
    Prescott Cactus says:

    @Ruckus:

    Dying is a strange time for most of us.

    It is. The bride and I have lived in a retirement community for a while, getting in very close to the early end of the age limit. We moved into a section that all the neighbors were new buyers. We have had the honor of watching as our neighbors age and deal with the aches, pains and trauma that comes over time. Not to mention the sudden heart attack or death by stroke.

    By living with an understanding of death you really begin to know that the road does NOT go on forever. The wheels are going to come off the cart at some time. Life is precious and all that.

    Many have thanked me for being a hospice volunteer today, but it’s hard to explain that the reward I get each time I help makes me a better and more caring person X2.

    Even being able to listen and reply today makes me feel that you shared something intimate and sacred with me.

    THANKS,
    Ruckus

  76. 76
    J R in WV says:

    @Baud:

    Only the best snark on B-J !!!

    @Prescott Cactus:

    I’ve never seen a comment thread lock up on B-J. They just meander away after a while. I frequently make a comment on a “dead thread” hours after the last comment, if it matters to me, or even the next day if I’ve been away.

    “Snarling Jackels!” That’s great, more quality snark. Only a couple of those, really. Mostly people who care about things being grumbled about.

    @Mart:

    When my Grandma was in a big Columbus OH, hospital, surgery at 93. And the surgeon acted like once he touched her, no one else’s opinion mattered. My Aunt K got the family lawyer, and went to the hospital administrator, and instructed him to keep Dr X away from her mother, or pay the price.

    So you weren’t the only person with a crazed doctor to deal with, far from it. And a good job you all did keeping them off your parent!

  77. 77
    Omnes Omnibus says:

    This is not something that I could do. It is good that there are people that can. Thank you for helping to provide this service for the people who need it and for their families.

  78. 78
    Prescott Cactus says:

    @Steeplejack (phone):

    Best one-two LOL I can remember. Kudos.

    Steeplejack,

    I was pretty nervous about this whole thing. Writing it up. Would ANYONE even reply. Would this be the first front page story in history to receive no replies. . .

    Baud showed up and it’s been flowing ever since.

    I thank him and his campaign for the boost !

  79. 79
    WaterGirl says:

    @Baud: Of course you would!

  80. 80
    Omnes Omnibus says:

    @Baud: So would I.

  81. 81
    Baud says:

    @Prescott Cactus:

    So in other words, you were worried this would be a dead thread….

  82. 82
    Ruckus says:

    @Aleta:
    Not answering for Prescott.
    But no water is horrible. Do you mean no water to drink or no water even in an IV? With no water you literally die of dehydration. It is not comfortable to be that dehydrated. It’s not comfortable to be close to that dehydrated. In my humble non medical opinion that is not good care. In my sisters case they even gave her very light glucose, to make her as comfortable as possible.

  83. 83
    amygdala says:

    Gawande’s Being Mortal was also made into a Frontline episode.

  84. 84
    Omnes Omnibus says:

    @Baud: At least he would be well prepared to deal with it.

  85. 85
    Amaranthine RBG says:

    When is time to get hospice involved? A patient is eligible for hospice care if the natural progression of their disease likely ends their life within 6 months.

    That may have been the structure at one one but it is no longer so.

    I have one family member who is receiving hospice care at his home and has been doing so for the last 14 months.

    Another family member has cancer but has not yet had it staged and there is not yet a prediction of how much time she has left. Nonetheless, a hospice organization has been providing home nursing care and social worker visits to help coordinate care and treatment.

    My point being is that people should not assume hospice=dead within x months. It can be a very valuable resource long before then.

  86. 86
    J R in WV says:

    @Davebo:

    Yeah, great care there for all kinds of medical issues. A huge cluster of giant medical centers!

    But to me, from a state where the big city has 50K people, everything inside the I-610 beltway is downtown. My brother and Dad lived way out in Cypress, almost to Tomball.

    It was a long drive in for those 8 am appontments, and Dad worked nights all his life. He hated getting out for a morning appointment if they were handing out gold coins!

  87. 87
    jl says:

    @Baud:

    ” My campaign could have reached so many more people if I had been given a guest post.”

    I thought it was a ‘guest post hospice’, rather than a guest post about hospice. So, I thought that was exactly what this post was.

  88. 88
    Aleta says:

    @Baud: oh good grief you are funny
    I like the idea of dying with dogs, and best would be dying to music, or crickets. or the little frogs in a pond.

  89. 89
    Prescott Cactus says:

    @April:

    Regarding comments about how care has changed a lot since the early 90s, what doctors used to do could be horrendous.Your big brother was a hero and a courageous advocate for your Mom.

    My great grand parents died in the 70’s and grandparents died in the 1980’s. Those memories, though very faded are not pretty. My great grandfather kept getting hit with the paddles by a doctor we later nick named “Bring him back alive, ***Dolemide”

    *** name changed

  90. 90
    Suzanne says:

    @Prescott Cactus: Wow. Thank you for all you do. This is amazing to hear from your perspective.

    When I was a kid, I lived with my grandparents. Both of them had a major medical event when I was 13 (grandmother had two strokes, grandfather diagnosed with melanoma and lymphoma), and the rest of their lives were in an out of hospitals, with family doing their best but the rest of us couldn’t do everything we should have, because we still had to work, go to school, etc. They both ended up dying in hospitals, partially because of their own stubbornness (though, oddly, not from stroke or melanoma or lymphoma). I would have much preferred having a hospice setting for them, and I think they would have, too. Sounds like you’re doing God’s work there.

  91. 91
    eemom says:

    @Ruckus:

    Same here….I am no kind of expert but experienced instant horror at the thought of withholding water from anyone or anything still living.

  92. 92
    jl says:

    ” Once certified as eligible for hospice, Medicare feels that extra care and cost should be available (no death panels – Thanks Oboma!) and that things like oxogen and a hospital bed are provided free of charge. ”

    Maybe Richard Mayhew should chime in, but I think standard hospice care is cheap compared to the kind of aggressive end of life care that is is often provided in the US, and that sometimes seems pointless or worse for frail people.

  93. 93
    a hip hop artist from Idaho (fka Bella Q) says:

    @amygdala: Do you have thoughts on how to handle (late stage) end of life cognitive issues that are distinct from dementia? I know I was lucky with both my folks, but I know others who weren’t. I suspect my question is really how to help families accept the decline, by providing a good explanation. If that makes sense.

  94. 94
    BillinGlendaleCA says:

    @Prescott Cactus: I think the natural progression of ALL the Presidential campaigns is hospice eligible(the election is in less than 6 months). However, the Baud!2016! campaign is beyond hospice care.

  95. 95
    pat says:

    @Elmo:

    I’d be surprised if attitudes have not changed since 1991. I have filed a power of attorney for health care with my hospital, at their suggestion.

  96. 96
    SiubhanDuinne says:

    My father died in February 1995, and we had in-home hospice for him the last couple of weeks. Wonderful, wonderful people!

    Not round-the-clock, however. I was there with him at night, by his side. But one night, I was just completely wiped out and went to sleep (in another room) for a couple of hours. It was during that window that he died, so I wasn’t actually by his side at the moment. And this makes me wonder — in light of the “no one dies alone” philosophy — is it not the case that some people may indeed prefer to make the transition on their own clock and calendar? (I’ll admit I’ve had twangs of guilt over the years about not being there with him at his moment, but I usually persuade myself that it was his choice and preference and timing.)

  97. 97
    Aleta says:

    @Ruckus: yes, it seemed barbaric. It was explained to us that it was painless, but it was not at all. I’ll put in my comment about how the hospital hospice staff explained it to us later. (There was no choice involved; it was the way they did it, and they thought it was the best way.) It would have helped me to know more before the moment came, but before that I had assumed “hospice” meant basically one thing. I wonder now if there is much debate about this difference.

  98. 98
    aimai says:

    Thank you so much for posting this. I am very interested in your experiences. I am about to start social work school but I think I would be very interested in doing this kind of volunteer hospice work as well.

  99. 99
    amygdala says:

    Regarding water or not… I have yet to see a hospice that forbids patients from drinking, if they’re able to do so comfortably. Key word, though, is comfortably. Patients who are dying, especially of stroke or some kinds of cancer, may not be able to drink fluids without coughing, pain, or other negative manifestations.

    Nasogastric or gastrostomy tubes are not benign; neither are IVs. They’re uncomfortable or worse to place and often need to be changed. The associated discomfort can make patients restless, which increases their suffering. Dying patients often are not interested in eating or drinking, which upsets us more than it does them. There is precious little evidence, for example, that feeding tubes improve duration or quality of life for patients with advanced dementia. Yet they’re often placed because of an imperative to do something.

    I’ve told the people who will make decisions for me if I can’t that even though I don’t believe in an afterlife, I’ll create one and come back and haunt them if they put me through that should I have a long slow fade at the end of my life. I’d rather slip away with subacute multigrain failure and a good hospice crew, without fluids or food, than be yanking at lines in a hospital.

  100. 100
    Prescott Cactus says:

    @Aleta:

    This might not be the kind of question you had in mind, PCactus, but do you (or anyone) have any comment or links about different hospices’ decisions about water vs no-water?

    Every question is a good question, although I am falling behind.

    I’ve never heard of the practice of withholding water. When a patient quits drinking or eating it is because they chose to. It is the beginning of the end. It’s one of the determine factor when to call in the 11th Hour people.

    We moisten the mouthes / lips of patients with little sponges right up until the end if they look dry.

  101. 101

    ParentsFromOhio both volunteered for a local non-profit 2-bed hospice. It was an educational experience for all. What was interesting to watch was how the facility integrated into the surrounding community over time. There was a steady supply of volunteers to perform many of the same things identified in the post. The number of different fund-raisers and sources of donations were a non-profit operators dream. It was kept small due to the NY state law that dictated size of the facility, more than 2 beds and it was considered a health care facility subject to significant administrative overhead that would have made it impossible to operate without a much larger patient base. Keeping it small allowed it to be in the community, rather than attached to some larger hospital. The stories of death and remembrance were legion for those two beds, so, so many people were touched by the ability to die in peace, with dignity, surrounded by people who served the living by caring for the dying.

    My hope is to be so lucky, that if I must linger before passing, it’s in a place like that.

    @Prescott Cactus: **ZING**

    Man I hope I never have to cash in my last chips on your watch.

  102. 102
    Prescott Cactus says:

    @a hip hop artist from Idaho (fka Bella Q): Thank you. I’ll catch up on that article later tonight or tomorrow.

  103. 103
    amygdala says:

    @a hip hop artist from Idaho (fka Bella Q): The party line is that cognitive difficulty sufficient to impair function is not normal at any age. Or put another way, “senility” isn’t a normal consequence of aging.

    Medical hairsplitting aside, whether it’s “uh-oh, I’m worried Dad has Alzheimers” or someone with, as an example, cognitive problems from a remote head injury and who is also getting on in years, one of the most important things to do is scrutinizing all medications (including over-the-counter), assessing sleep, considering depression, and checking for things like thyroid trouble. These are all things that can impair cognitive function, especially in older people, and can be fairly easy to fix.

  104. 104
    Aleta says:

    @SiubhanDuinne: some people may indeed prefer to make the transition on their own clock and calendar

    I believe that is true. For one thing, they may be holding on for the sake of the people who are with them. I sort of think that some people might want quiet instead of distractions

  105. 105
    Prescott Cactus says:

    @Mart:

    A doctor was screaming at my sister (who called me crying at 3 in the morning) that she was killing our father if she did not let him intervene.

    That is Soooooo wrong. I’m glad you were able to stop the madness and allow Dad to pass quickly. It’s tough when families / partners / or doc push their own agenda before the patients.

    DNR’s a cure for this symptom.

  106. 106
    debbie says:

    @WaterGirl:

    I haven’t been able to make peace with the fact that death is inevitable.

    It’s not so much that it’s inevitable, it’s that it’s approaching.

    Both of my parents died from cancer, almost 30 years apart. The difference in their deaths was astounding. My father (in the 1970s) really suffered, even though he was in a coma the last two months. My mother, on the other hand, suffered not so much and her death was so gentle, I didn’t believe she’d died (to my youngest brother’s consternation).

    Some medical advances are good.

  107. 107

    @Mike J: This. Neighbor across the street had emergency heart bypass after a heart attack, and it was really bad. In contrast to other comments upthread, the attending told the wife to prepare for the worst, as in, he may not even wake up after the surgery. He was in ICU, and they bounced him to hospice not long after. He hung at the very edge for several weeks, and then crept back to being well enough for them to kick him out. He was alive for a couple more months, unfortunately it caught up with him and he was gone pretty quick.

  108. 108
    Prescott Cactus says:

    @Omnes Omnibus:

    This is not something that I could do. It is good that there are people that can.

    Omnes Omnibus,

    There is a ton of stuff I could never do. Be an EMT or a cop. Veterinarian. I got lucky. I was with my Mom when she passed and found it to be an enlightening experience instead of a scary one.

    Sometime you are in the right place at the right time. As always, you’re welcome. Thanks !

  109. 109
    a hip hop artist from Idaho (fka Bella Q) says:

    @amygdala: I’ve offered that advice (IANAMD) to some friends, and was reminded in no uncertain terms that IANAMD, so my thoughts were useless. The current conundrum a friend faces is her ma is multi-organ end stage and “ready,” so she’s not real responsive. My suggestion was that ma is quiet, not dementing, and that perhaps some OTC meds might bear watching. My IANAMD belief/suspicion is that her mother has not much to say at this point, but that’s not what daughter wants to hear/believe.

    Thanks for the response.

  110. 110
    eclare says:

    @Prescott Cactus: There was a long form article in the NYTimes, maybe by Gupta, talking about the benefits both to the patient and the family of entering hospice. And as the article pointed out, usually it’s the family who insists on radical care.

    Thank you for what you do, it is such an important part of care. And thank you for this thread.

    ETA: seeing later posts, and you thought no one would reply. Unfortunately, we all have experience with this, and it is good to talk about.

  111. 111
    Prescott Cactus says:

    @amygdala:

    Thank you for this post and for serving as a hospice volunteer. There is at least one study demonstrating that patients in hospice care live longer (as well as more comfortably) than those who are not.

    You are welcome. I would tend to agree with that study and compliment it with “if only people would get into a hospice program earlier”. If you ever come across the study, pass it along, either on this thread, which I will review for a few days or whenever.

    Thanks !

  112. 112
    ThresherK says:

    Good on ye.

    My mom worked at the first hospice in Our State, more years ago than I’d care to remember. She had passed on, now for two decades.

    I’d like to think some of the things learned back then were applied to the last comforts which my wife’s parents had, in their separate end-of-life situations.

  113. 113
    Prescott Cactus says:

    @RSA:

    This brought tears to my eyes. I admire you for what you do. Thanks.

    You can’t be afraid to cry doing this stuff. When it’s just you and the patient, it’s a very spiritual feeling. When family, friends and caregivers are present, you “become the blackboard” and let them create the mood. I’ve experienced some great stories and laughter as a family member passed.

    I also had to explain to an Alzheimer’s patient that her husband had passed. A few times, until the Chaplain arrived. Lots of crying indeed.

  114. 114
    Aleta says:

    @Prescott Cactus: The hospice person in charge explained at the beginning that the type of care they did was to keep the patient comfortable, give no food, and give no water at all. She said the way with no water was better because death was faster, and because it was harder on the patient to be kept alive with water intake because that allowed the body systems to go more out of balance.

    We could moisten her lips with a sponge, but that was all. It was about 10 years ago; I can’t remember right now if she was at Wilson Memorial or Binghamton General Hospital, in their hospice care.

    She was able to drink at that time, and she had eaten yogurt a few days before. The decision making and communications had mistakes from both family and some nurses.

  115. 115
    J R in WV says:

    @amygdala:

    As my Dad dwindled away from COPD caused by his chemo (one of the very many side-effects you sign away before treatment starts) hospice in our case used swabs to moisten his mouth, and we would give him tiny ice chips with a little spoon. He couldn’t tolerate anything more than that as his digestive tract was shutting down for lack of oxygen.

    But we were able to keep his mouth moist, which seemed to help that last couple of weeks.

    Dad died around 1 pm on election day, 2004. It was a hard day for me, as Bush was winning that election, and I was in TX, and my Bro had a Bush 2004 bumper sticker on each vehicle! I will always be so glad my Bro didn’t say a word about the election results that evening, none of them did, and it was the nicest thing they could have done for me.

    An interesting story, maybe. Dad traveled a lot, and looked up West Virginians when he was on the road. Since so many West Virginians have left the state looking for good work, he found them all over the world.

    He didn’t much like Texas, as it wasn’t at all like the green rolling hills of WV. So when the driver from the funeral home my brother and I had showed up, we were surprised and a little happy to find that he had just been hired, and was from a small town here in WV. He was apprehensive, as sometimes families are having a hard time dealing with their loss. We, on the other hand, were glad a West Virginia boy was going to take Dad on his last ride. I think Dad would have liked it too, had he known.

  116. 116
    Prescott Cactus says:

    @Davebo: I’ve heard nothing but great things about MD Anderson and had an Aunt receive treatment there.

  117. 117
    Adam L Silverman says:

    @Prescott Cactus: Its clearly all my fault. Regardless of which one of us you reached out to, I’m glad you did! Very well done post.

  118. 118
    Wormtown says:

    Well, more power to all of you. My experience with my mother and a close friend was not good. On my mom, they kept saying “she is not in pain”; but she sure as hell looked very uncomfortable. It was very hard being with her. My other experience was a very close friend, chose hospice and wanted to die at home. Total cl*sterf*ck; may have because her (very loving) husband panicked at the end (called 911, couldn’t find the dnr …..he was alone, and had to make decisions, and clearly was unprepared). It was VNA; and imho, they were awful. But, I think dying can be very difficult; it’s just a roll of the dice as to how hard.

  119. 119
    delk says:

    Hospice for my mother was a gift. Before she left the hospital she was in a harsh lighted, machine filled, beeping, noisy, and chaotic atmosphere. It was hard to look at her and not see pain and discomfort.

    The hospice was so peaceful. It was night and day.

    My husband is an Elder Law professor. He always stresses Estate Planning and the importance of preserving the dignity of the elderly. Sadly, elder abuse is becoming more common.

  120. 120
    Prescott Cactus says:

    @Gelfling 545:

    His death was not unexpected and and he had made his wishes clear in writing but they still acted as if my daughters were terrible people.

    The bad apples. Good insurance and a side order of guilt.

    I’m thankful your Dad was able to make his wishes clear. I think the more people / families talk about their health care desires and expectations, the easier it is for children and spouses to remain strong and advocate for the patients wishes.

  121. 121
    Mnemosyne says:

    @SiubhanDuinne:

    After my father-in-law died while the rest of the family was briefly out of the room, I heard so many stories from other people about their loved ones doing e same thing. Over and over again, it was I just left for a few minutes to get some coffee/ take a shower/ etc and they were gone. So I think there are some people who want to be alone.

    When my father was unconscious at the end, I told him that I was taking my mom home to rest because I was pretty sure he was going to hang on while she was still there, because he knew how upsetting it was going to be for her. And, sure enough, I got the call from my brother at the hospital about 45 minutes after I dropped her off.

  122. 122
    Adam L Silverman says:

    @Prescott Cactus: As far as I know comments don’t lock. If they do, no one mentioned it to me when I came aboard.

  123. 123
    Prescott Cactus says:

    @J R in WV:

    You have real talent as a straight man… in the comedy line!

    That was a curveball. I got to the end of the sentence and thought, in what way have I revealed if I’m straight or not gay. . . THANKS !

    I’m hoping my bride thinks I “have real talent as a straight man” . . . I can dream. . .

  124. 124
    amygdala says:

    @a hip hop artist from Idaho (fka Bella Q): Tough situation. Some of medicine is technical, complicated knowledge, but a lot of it is [not-so] common sense. Sounds to me like you offered some solid advice.

    Failure of pretty much any major organ system can make patients drowsy, confused, or completely comatose. We look for those things when patients are off their baseline, and are grateful for them when patients have things we can’t fix.

  125. 125
    Mnemosyne says:

    @amygdala:

    My grandmother lost most of her sight and her hearing in her mid-90s, and that seemed to lead to what looked like cognitive issues, especially once she got tired. Honestly, it seemed more like she was losing touch with the rest of the world because she couldn’t see or hear, but if you got up close enough, she still knew exactly who everyone was. She was definitely aware enough to firmly refuse to have her pacemaker replaced because she was already in her mid-90s fer goshsakes and how much longer did we think she wanted to hang on?

  126. 126
    Ruckus says:

    @eemom:
    I do know that some hospices did give nothing to the patient once they were admitted. But I thought that had stopped long ago as it is cruel. A little saline and maybe some glucose to help with the morphine or whatever may prolong the inevitable a few hours but I’d bet it makes the trip a lot better.
    We do have to understand there are two kinds of hospice. Long term and short term. Long term is for those needing a lot of assistance living, say someone with Alzheimer’s or ALS. Short term is someone dying, probably within 3 weeks. The concept is reasonable care in either case but the treatment will be a lot different. Short term is there to make the person as comfortable as possible for the time they have left.

  127. 127
    Prescott Cactus says:

    @Adam L Silverman: I somehow had the foresight to leave your fingerprints at the scene of this, if in fact it broke bad.

    Everyone here adds their little special touches. Soccer and Healthcare are Richards forte’. You have a broad palette as well. When you mentioned submitting as a guest commenter, I thought it would be nice to contribute.

    My original goal was 15 to 20 posts and the bride has since told me that I wasn’t very confident in my prediction. This has been a wonderful experience.

    I hope I haven’t missed something or someone. If I have PLEASE repost it. I’m a bit dizzy from going up and down the post. I’m a bit dizzy anyway, this just adds to internal commotion.

  128. 128
    Mnemosyne says:

    @EdinNJ:

    I think that unfortunately different facilities and medical personnel can interpret DNRs in different ways. G’s grandfather had a DNR and some fluid in his chest, and they had to fight with the nurse to get her to suction the excess fluid out rather than let him slowly choke on it and get more and more distressed (he was fully conscious at the time). But because there was a DNR, the nurse seemed to think that meant withholding all treatment, even things that would make the patient more comfortable.

    I should say that I’m not sure if he was in hospice or not — this may just have been a regular hospital or nursing home nurse.

  129. 129
    Adam L Silverman says:

    @Prescott Cactus: You did great! And are continuing to do so in answering people’s questions/responding to their comments. You’ve got it well in hand. And I wasn’t complaining that you thought to send it to Richard rather than to me. As I indicated, I’m just glad you decided to do so.

  130. 130
    Prescott Cactus says:

    @delk:

    Hospice for my mother was a gift. Before she left the hospital she was in a harsh lighted, machine filled, beeping, noisy, and chaotic atmosphere. It was hard to look at her and not see pain and discomfort.

    The hospice was so peaceful. It was night and day.

    My husband is an Elder Law professor. He always stresses Estate Planning and the importance of preserving the dignity of the elderly. Sadly, elder abuse is becoming more common.

    Funny you should mention it delk, but this was originally cover both hospice and dying. It just got to big for one post.

    The importance of having the right documents and all your ducks in a row is supreme. I also wanted to talk about the dying process, which can begin well before things start shutting down internally. Hopefully Richard will allow my return next week to touch upon these topics. I’m not a lawyer, I’ll just be suggesting stuff you need to take care of.

  131. 131
    Ruckus says:

    @a hip hop artist from Idaho (fka Bella Q):
    I’ve been involved in both dementia present and not in end of life care. The dementia one was first and the best thing anyone did for me was to explain what the disease process was. That was a friend who had been through it with his mom. It helped exponentially. I tried to explain to other family members but they didn’t want to believe. And they didn’t want the patient to live in a home. But it became quickly apparent that trying to care at home for a dementia patient that you are related to is impossible for the vast majority of people. It’s just too difficult to watch them die little by little every day as well as do all the physical stuff necessary. It’s not easy for anyone but a little detachment is necessary. After the first time we knew that hospice care can be a decent experience and while finding one that you can afford and that takes reasonable care of the person is difficult, it may very well worth it.

  132. 132
    Prescott Cactus says:

    @Adam L Silverman: Thanks !

    If this ended up having 3 posts and two of them were about hockey playoffs, I’d have tried to drag you Richard under the bus with me for malfeasance in allowing a commoner to post on the front page ; – )

  133. 133
    Ruckus says:

    @amygdala:

    I’ve told the people who will make decisions for me if I can’t that even though I don’t believe in an afterlife, I’ll create one and come back and haunt them if they put me through that should I have a long slow fade at the end of my life. I’d rather slip away with subacute multigrain failure and a good hospice crew, without fluids or food, than be yanking at lines in a hospital.

    This is a great comment.
    You are right, I’ve had a few IVs and while I did appreciate them at the time, I didn’t enjoy any of them. Of course I’m also one who is considering end of life assistance when the time comes, hopefully at least 2 or 3 decades in the future.

  134. 134
    Prescott Cactus says:

    @Mnemosyne:

    After my father-in-law died while the rest of the family was briefly out of the room, I heard so many stories from other people about their loved ones doing e same thing. Over and over again, it was I just left for a few minutes to get some coffee/ take a shower/ etc and they were gone. So I think there are some people who want to be alone.

    When my father was unconscious at the end, I told him that I was taking my mom home to rest because I was pretty sure he was going to hang on while she was still there, because he knew how upsetting it was going to be for her. And, sure enough, I got the call from my brother at the hospital about 45 minutes after I dropped her off.

    Thank you for sharing this truth, which I wanted to get in. When I went to my first 11th Hour assignment the program director told me about this “phenomena”. About every hour or hour and a half, leave the room for 5 or 10 minutes and allow the patient to begin actively dying on their own. That’s just how it happened. I whispered in his ear that we would back. That if he wanted to go while we were gone that it would be ok and that we would be back in a little bit. She had told me to do this. . .

    Sure enough we returned and within a few minutes the last breathes were leaving his lungs. We were both kind of shocked surprised. She then of course explained that this was NOT how things usually happened.

    So indeed you are spot on right that this is indeed how some folks like to leave this world. THANKS !

  135. 135
    amygdala says:

    @J R in WV: I’m sorry about your Dad. Doesn’t matter how old, how expected or ill, losing a parent hurts.

    Ice chips and those glycerin swabs can be a godsend. Dry mouth can be a real bear in the last days and hours of life.

    Except in threads like this, I mostly lurk, but really enjoy your posts for your humanity and graceful prose. I’m glad that awful day in 2004 wasn’t even worse with a family political battle, and that your Dad’s final ride was so fitting.

  136. 136
  137. 137
    Prescott Cactus says:

    @jl:

    Maybe Richard Mayhew should chime in, but I think standard hospice care is cheap compared to the kind of aggressive end of life care that is is often provided in the US, and that sometimes seems pointless or worse for frail people.

    I’d love Richard’s take on this. Much more treatment is made available to the patient and their family, but the end of life costs vs over treatment and life extension are a great question. I’ll see if he can return to answer that when he can. I’m going to pop back in for a few days so I don’t drop any questions.

    THANKS !

  138. 138
    Prescott Cactus says:

    @BillinGlendaleCA: I’ve hear rumors of Baud 2020. More great ideas and less filling ( or filing) income taxes !

  139. 139
    Prescott Cactus says:

    @PurpleGirl:

    I congratulate you on your service to your community. I learned about hospice care when I took courses in recreational therapy in the late 1970s for a Masters degree.

    My dear college friend who I called “weird twin” (born same day, same year) died in hospice care. She’d been fighting breast cancer, and had seemingly beat it but they discovered it had spread to her lungs and brain. Her mother and her sisters wanted her to keep doing chemo.

    Thank you !

    Peoples minds change on their own treatment courses and it’s surprising that others forget who should be driving the wagon. If things work out I’d like to return and talk more about dying itself. Conversations are important. Having someone who will be there for you and make the tough call that NO we are not going to do this or that if you are unable to respond.

    Having everyone on board and dialed into your wishes. Big !

  140. 140
    Prescott Cactus says:

    @Gravenstone:

    No questions.

    You are welcome Gravenstone ! If you think of something later, please stop by. I’m advised that threads never die (or go on hospice) here at BJ and I will be returning for a few days to clean up and catch up.

  141. 141
    RSA says:

    @Ruckus:

    But it became quickly apparent that trying to care at home for a dementia patient that you are related to is impossible for the vast majority of people. It’s just too difficult to watch them die little by little every day as well as do all the physical stuff necessary.

    That’s a fine description, and exactly right: It can destroy you. Most people (including me, for a long time) don’t realize this.

  142. 142
    amygdala says:

    @Mnemosyne: You’re a good granddaughter for figuring out she was in there. People sometimes adapt to age-related hearing loss by teaching themselves to lip-read, often without even realizing it. If visual loss intervenes, it’s a double whammy.

    As Joe Biden might say, God love your grandmother for asking exactly the right question. When families would plead with me to get an elderly relative to consent to something he or she had, in sound mind and spirit, declined, I would remind them that one doesn’t generally live to a ripe old age by making a lot of bad decisions.

  143. 143
    Prescott Cactus says:

    @Florida Frog:

    I am certain that the honest compassion of a hospice worker would have eased every one’s pain. Curse you forever, Fox News!

    Florida Frog, Agree with you on both counts ! I’m sorry your Mom’s path was so tough. I don’t want to paint with broad brushstrokes but oncology and meds used can be very expensive. A new line of multiple melanoma drugs are coming to market. $400,000 for a years treatment.

    When a patient has the will to live, to fight, to struggle I’m all in favor of that. But it’s their choice. They need to make informed decisions with all consequences understood. Family, friends and partners should all be in the same train of thought.

  144. 144
    Wag says:

    @Prescott Cactus: After 142 responses I guess you have your answer. Nice work

  145. 145
    Omnes Omnibus says:

    @Wag: We’re just setting him up for disappointment when he posts the next one and tumbleweeds roll through it.

  146. 146
    PurpleGirl says:

    @Prescott Cactus: This comment isn’t about hospice care but is about allowing the patient to decide to die instead of hanging on.

    A work colleague’s husband was in a freak fire at their home. He had third degree burns over 90+ percent of his body. The hospital had him in a medical coma. She was going to the hospital every day before work to sit with him for a while. One day the hospital social worker suggested that she should consider telling him to let go — the doctors were unable to bring him out of the coma because he’d be in so much pain. They had no idea how long he could hang on. So my coworker did just that. One morning she told him “if you’re in pain and very tired, you can let go. I have my brothers to take care me and I know you want to take care of me. But if you’re tired and in pain, let go. Sleep. I’ll understand.”

    So she left the hospital for work and about 20 minutes after she arrived at work, she received a call from the hospital that her husband had died. They never figured out how the fire started and how he got hurt. But she was grateful to the social worker because the decision and her words meant they could move forward and her husband was out of misery.

  147. 147
    Prescott Cactus says:

    @WaterGirl:

    Thank you. I’m glad you are able to do this work, and do it well. I haven’t been able to make peace with the fact that death is inevitable.

    Thanks WaterGirl !

    I feel that our ability to make peace with death is somehow related to the amount, if any, exposure we have to death. I’ve made a note to myself to look for a couple of books to suggest. A classic is Elizabeth Kubler-Ross’s 5 stages of Grief. It’s a classic, but I wouldn’t start their. In my neighborhood I lose someone about every 2 years. It’s a short, 1/2 block.

    Stop back over the next day or two and I’ll look for something appropriate. Also the younger you are, the less likely to consider death is normal. Remember, you don’t to become his friend, just understand he’s out there.

  148. 148
    Prescott Cactus says:

    @J R in WV:

    Thanks, and keep up the good work as you can!
    JR in WV
    and sometimes in AZ

    Thanks for the compliment and also of reminding me that you can only do so much. I mentioned my Dad’s two close calls that involved Hospice. It was nice to know he had a great team caring for him, but to be honest, both my team leader and I knew that I had to take a step back for a bit. Caregivers can’t give care if they need rest themselves. The beauty of not being dedicated to one patient is I can step away at any time. I usually get a 2 or3 hour notice before I go for a visit. just enough time to get in the right frame of mind for whats ahead.

    It’s awesome that you were covered by the Family Leave Act and caring bosses and employer that allowed the best in what is a heartbreaking situation. As a migrant construction worker I never was covered. Or had a paid vacation or a sick day. . . Sorry for that whine. It was a great gig, looking back. . .. way back!

    Give a shout next time you’re in AZ and maybe we can get a BJ get together arranged (or arraigned) !

  149. 149
    SiubhanDuinne says:

    @Prescott Cactus:

    Although, as related above, I was not by my father’s bedside at the moment he died, I have since had the inestimable privilege of being next to, and holding hands with, two other relatives as they traversed that most mysterious path. It is really an honor, and I suspect may be one of the most gratifying parts of being a hospice professional or volunteer.

    I am not in any way a religious person, but there is something amazing about the shift in energy when a person departs — I don’t know whether it’s that they stop breathing, or their heart stops beating, or their brain stops functioning, or the soul ascends, or what — but there is a decided difference in the presence of the person. You can tell in a split-second. It’s amazing, and miraculous, and one of the most awe-inspiring moments of the human life-cycle.

  150. 150
    EllenH says:

    I second or third the recommendation to read Being Mortal by Atul Gwandi. I listened to it on Audible and then shared it with my 92 year old mother so that we can have “the conversation.” My father died 14 years ago after a sudden onset of illness that we never fully understood. He went into the hospital unexpectedly right before Christmas and died on March 3rd. Everything was complicated by the fact that he was already exhibiting dementia that was only exacerbated by pain and the hospitalization. We were able to get him home and into the Medicare hospice program. That made such a huge difference for my mom. He ultimately died at home in her arms. One more book recommendation for anyone dealing with dementia or Alzheimer’s. The 36 Hour Day helped me understand and deal with a lot of my dad’s frustrating behaviors.

  151. 151
    SiubhanDuinne says:

    @Prescott Cactus:

    I hope you will stop in frequently, and I would like to see this thread and others with you as the FP archived for future reference. Maybe in with Richard Mayhew’s threads.

    This is a topic that many of us are, or will soon be, dealing with for elderly relatives or for ourselves. Your first-hand perspective is invaluable.

  152. 152
    Prescott Cactus says:

    @JPL:

    Thank you for your volunteer work, and thanks to President Obama, the program was extended. Since we are all mortal, it’s important to make sure that wills are kept up to date.

    Thank you. FSM willing and if Richard would allow me to guest again, I’d love to talk about the other side of hospice, ah, that’s death, next weekend. Same time, same channel. I’ll see if I can.

    Willls,
    POA’s
    HC POA’s
    Directives,
    etc, etc.

    Along with what happens as you or others approach death. No legal advice, just stuff you need to understand.

  153. 153
    WaterGirl says:

    @Prescott Cactus: Yeah, I read Elizabeth Kugler-Ross in college. It would have to be something short and simple and fairly approachable or I’m never gonna pick it up. :-) But we had a big scare with my brother-in-law this week, and his sister died a month ago, and I have another friend whose husband is in a real struggle with chemo and another friend whose wife is dying of brain cancer. She went into hospice in December 2014 (!) and she is still holding on, she can’t see, she can’t turn over, she can’t do anything, yet still she doesn’t let go. Anyway, that’s a lot of stuff going on at once so it’s hard for me to not realize i need to at least dance around the edges of facing our mortality.

    edit: See, I couldn’t even say “my mortality”!

  154. 154
    Miss Bianca says:

    I’ll never forget the hospice volunteers who came and made it possible for my mother to die at home. It gave us all a break, a sounding board, a shoulder. Thank you for doing that work.

  155. 155
    SiubhanDuinne says:

    @Prescott Cactus:

    Permission.

    I will be facing it again fairly soon, I think, with yet another elderly relative.

  156. 156
    a hip hop artist from Idaho (fka Bella Q) says:

    @Prescott Cactus:

    I feel that our ability to make peace with death is somehow related to the amount, if any, exposure we have to death.

    I think this is an important point, and an insightful one as well. I consider myself fortunate to have been exposed to death perhaps more than many in my age cohort.

    By the time I was maybe 9 or 10, I’d experienced 3 people dying in our house. My paternal grandfather was the first; he’d been in a nursing home with substandard care following a partially paralyzing stroke and then came to our house where my maternal grandmother cared for him for probably the last 10- months of his life. She also took care of a couple of elderly women in the neighborhood, and when it was very close, moved them to our house for the final few days.

    So I learned that death was what happened at the end of life, and grew up with the notion that it was both normal and not an event for which a hospital was required. Probably quite an unusual experience for a kid in the 60s, but I think it’s helped my views about death.

  157. 157
    Prescott Cactus says:

    @eemom:

    What a sad and beautiful thread.
    @WaterGirl: I haven’t been able to make peace with the fact that death is inevitable.

    Me either.

    eemom, Thanks, that’s a lovely compliment.

    If I can help in any way. Suggest some books. maybe if you feel like asking me a few more questions ?

    It’s a path which with we all must one day go. The more prepared you are, the easier the journey.

    Stop back later and I come up with books for you and Watergirl.

  158. 158
    Prescott Cactus says:

    @Baud:

    I’m always up for an electronic hug. And FWIW, I would be my favorite commenter too.

    ;-)

    It’s your modesty and sense of humor. Large hat tip you. This was a unknown for me and your comments set a tone and me feel comfortable. As previously written, there is a lot of snark around here but it comes with a ton of caring.

    Electronic hug to you.

  159. 159
    EllenH says:

    Another thoughtful book on this subject is “When Breathe Becomes Air” by Paul Kalanithi a 36 year old neurosurgeon diagnosed with lung cancer. He wrote it during the last months of his life. It’s heartbreaking but beautiful.

  160. 160
    Prescott Cactus says:

    @RSA:

    This brought tears to my eyes. I admire you for what you do. Thanks.

    Very sweet of you ! I probably wouldn’t have wanted any tears today, but in actuality, it’s probably to be expected. Again, thanks !

  161. 161
    Prescott Cactus says:

    @EllenH:

    Another thoughtful book on this subject is “When Breathe Becomes Air” by Paul Kalanithi a 36 year old neurosurgeon diagnosed with lung cancer.

    Awesome book. Read it about a month or so.

    Rated 1+ boxes of Kleenex needed

  162. 162
    a hip hop artist from Idaho (fka Bella Q) says:

    @EllenH: That is indeed an amazing and heartbreaking book.

  163. 163
    Prescott Cactus says:

    @EdinNJ:

    We still don’t know and never will know what went sideways in those 3 months. Still shocked he’s gone.

    The goal of hospice is to treat a patient with care and comfort.

    One take away is that once someone mentions hospice, they are seeing a 6 month time line for the patient. That’s why it is sometimes hard to enthusiastically jump into a great program with excellent benefits is because you are planting that flag 6 months in front of you.

  164. 164
    Ruckus says:

    @Prescott Cactus:

    I feel that our ability to make peace with death is somehow related to the amount, if any, exposure we have to death.

    I think this is it exactly. Like any experience, if you have no idea what is going on or what emotions you will feel, it’s scary. Having exposure to death answers for each person some of the questions and opens the idea up that you will be OK. Not the same but OK. I relate this to a story of a friends death from a sporting event he loved to participate in. He was 21. I went to the funeral with about 400 of his friends. Some of us went back to his parents house where he still lived. Till then I’d only known his parents by Mom and Pop, as did everyone else when we talked to them at the events. Any way at his home I went into his room and sat on his bed and just looking around I started to cry. His sister came in, sat down and put her arm around me. Asked why I was crying. He’s gone and he’s barely had time to have any life was my answer. She said something that’s stayed with me for 40 yrs.
    He knew the risks, he loved what he was doing and death is a part of life.
    I couldn’t argue with that in the least. It’s not easy losing a friend or family member but it will happen. And one day the person in the casket will be you. I started seeing family members (and friends) die when I was 10. They have been dying pretty regular ever since and I haven’t been ten for over half a century. I was the last person to talk to another friend who I watched die 15 minutes later in an accident about a year after my friend above. It doesn’t make me immune to the process, it just makes me a little more used to it. And yet I’ve known people who say that no one they know died until they were in their 40s. That seems strange to me.

  165. 165
    Prescott Cactus says:

    @Ruckus:

    We don’t even need to find someone or something to blame for this, we just need to do better at understanding it.

    How true. The facts get in the way of feelings. Death can be a very scary place for some people. How death used to be vs how it is now is different. Folks used to die in bed at home.

    Some people have been exposed to mishandled care and the consequences that follow. As Warren Zevon sang, “it ain’t that pretty at all”.

    Some people choose Door #2. Acceptance. I am going to die. Ah, not for a while. . .

  166. 166
    Prescott Cactus says:

    @Baud:
    @Omnes Omnibus:

    Dying thread and being prepared for it.

    Now I’m crying !

  167. 167
    Prescott Cactus says:

    @amygdala:

    Gawande’s Being Mortal was also made into a Frontline episode.

    amygdala,

    Thanks for sharing this !

  168. 168
    Prescott Cactus says:

    @Amaranthine RBG:

    I have one family member who is receiving hospice care at his home and has been doing so for the last 14 months.

    Amaranthine RBG,

    You may indeed be right on changes. I know that you can receive hospice care for much longer for 6 months as you are re-evaluated to ensure that still eligible. The government allows greatly expanded benefits under hospice, but they don’t / can’t / won’t let you get them forever.

    I’ll look into it.
    THANKS !

  169. 169
    EdinNJ says:

    @Prescott Cactus:

    Appreciate the response. We understood what hospice was for, my issue was with the doctors that recommended it. I was responding to another poster who, like us, feel that the doctors are sometimes less than honest with families, especially when they miss something in the treatment and don’t want to admit it. Knowing several friends who’ve had family members come out of hospice, we trusted that this was our situation because it was what we were told. Instead, my father was dead after being in hospice for a total of 10 days, wrapped around one emergency hospital admission. Only two weeks after being told he was going into hospice to “take a break from all the doctors visits”.

  170. 170
    Prescott Cactus says:

    @Suzanne:

    When I was a kid, I lived with my grandparents. Both of them had a major medical event when I was 13

    Suzanne,

    Thanks for the compliments !

    So your first year as being a teenager didn’t sound like a fun one. I don’t know what your current feelings are about death, but having so much happen at that age probably exposed you to a lot that shaped your current outlook.

    I wish hospice was there when you needed it back then, but thankfully you know about it now.

    Take care !

  171. 171
    eemom says:

    @Prescott Cactus:

    Thank you. I would very much appreciate those book rec’s.

    There was something I wanted to ask, but felt a little hesitant. If it’s something you feel like sharing, I wondered what your thoughts are about afterlife.

    Not a popular topic around here, where most folks tend to scoff at the idea. I can’t quite bring myself to dismiss it, though.

  172. 172
    Prescott Cactus says:

    @SiubhanDuinne:

    And this makes me wonder — in light of the “no one dies alone” philosophy — is it not the case that some people may indeed prefer to make the transition on their own clock and calendar? (I’ll admit I’ve had twangs of guilt over the years about not being there with him at his moment, but I usually persuade myself that it was his choice and preference and timing.)

    SiubhanDuinne,

    Please let the guilt escape you ! ! !

    You are indeed correct, some people wish to die alone. As I mentioned up-thread (hours ago ; – ) that we usually leave the room of a patient, tell them we are leaving and tell them it’s OK to “let go” when we are away.

    Many indeed chose this path. Let that guilt go. As a group of volunteers we have talked about this and have come to the unscientific conclusion that some patients don’t want to burden the one in the room with dying in their presence. Another near the top of our list was that they wanted the peace and privacy of a solo journey.

    Someday, we’ll all know the answer. Lets just put it off for awhile, OK !

  173. 173
    Prescott Cactus says:

    @eemom:

    Thank you. I would very much appreciate those book rec’s.

    There was something I wanted to ask, but felt a little hesitant. If it’s something you feel like sharing, I wondered what your thoughts are about afterlife.

    eemom,

    I’ll be dropping a post at the bottom of this thread in a day or two with book rec’s.

    Don’t mind the question at all. I went to a public school, but raised Catholic. That meant unless you were a nun or lucky enough to die immediately after your sins were forgiven in the confessional box by a priest, you were going to Hell. My misspent youth assured that course anyway. Alas, now I am a former Catholic for this and other reasons.

    My experience with the 11th hour program has opened up something within me. Gibberish, perhaps. After being with more than a dozen who have taken that final journey, I have a feeling that it just doesn’t end with the clank of the coffin top and the sound of 6 ft of dirt hitting the lid.

    I think there is more out there. I’m not a Buddhist by any means, but I wish I had the discipline and kind heart to be. They believe that we keep coming back. I don’t know. I just don’t think it ends here. Forever.

  174. 174
    Prescott Cactus says:

    @aimai:

    Thank you so much for posting this. I am very interested in your experiences. I am about to start social work school but I think I would be very interested in doing this kind of volunteer hospice work as well.

    aimai,

    Thank you. You can always do both. Once you are trained the commitment can be as small as 4 hours a week. It’s a very rewarding volunteer job. You are paid back in multiples of which you give. You are taught, but you learn much on your own. About life. About people. Do consider it. It was life changing for me.

    Take care !

  175. 175
    Prescott Cactus says:

    @amygdala:

    Regarding water or not… I have yet to see a hospice that forbids patients from drinking, if they’re able to do so comfortably. Key word, though, is comfortably. . . . . . . . . ”

    Beautiful and great answer.

    You don’t give fluids to people who are unconscious. The water would possibly go to their lungs creating a real problem that is even greater.

    I don’t know if that is what was originally meant by “no water” ? ? ?

  176. 176
    Prescott Cactus says:

    @BruceFromOhio:

    ParentsFromOhio both volunteered for a local non-profit 2-bed hospice. It was an educational experience for all

    **ZING** Man I hope I never have to cash in my last chips on your watch.

    Bruce,

    Thanks big time for sharing that me. The vol time I spend is precious, but that sounds like a wonderful place to put in some hours. I’ll have to explore my neck of the woods for a small intimate setting. Great share and warm feeling !

    Loved the **ZING**

  177. 177
    Ruckus says:

    @Prescott Cactus:
    I didn’t answer very well I think. My point was that if the rule is never any water to drink or saline IV I think that is wrong. And I have been told that some hospices do or used to do that. I think the concept should be water/ice chips or IV as necessary for the comfort/well being of the particular patient. You aren’t trying to kill them, just make them comfortable for how ever long it takes.

  178. 178
    Prescott Cactus says:

    @eclare:

    There was a long form article in the NYTimes, maybe by Gupta, talking about the benefits both to the patient and the family of entering hospice. And as the article pointed out, usually it’s the family who insists on radical care.

    Thank you for what you do, it is such an important part of care. And thank you for this thread.

    ETA: seeing later posts, and you thought no one would reply. Unfortunately, we all have experience with this, and it is good to talk about.There was a long form article in the NYTimes, maybe by Gupta, talking about the benefits both to the patient and the family of entering hospice. And as the article pointed out, usually it’s the family who insists on radical care.

    Thank you for what you do, it is such an important part of care. And thank you for this thread.

    ETA: seeing later posts, and you thought no one would reply. Unfortunately, we all have experience with this, and it is good to talk about.

    eclare,

    Thanks ! It is good to talk about this stuff. Good to hear others stories and good for all to share their own. Even unburden themselves. I’ll look for that NYT article and link to it if I can in a “Summery Post”.

    In fact I did have a serious case of “What happens if nobody shows up. Kind of like throwing a party and it’s 5 minutes past the invite time and nobody has rung the doorbell yet. In a frenzy of reading and replying I’ve discovered that 5 hours has gone. Those hours will never be regained, but could never have been so well used.

    The bride told me she was concerned she would have sign in to make “sockpuppets” to ask me questions. . . Life is funny !

  179. 179
    Prescott Cactus says:

    @ThresherK:

    My mom worked at the first hospice in Our State, more years ago than I’d care to remember.

    ThresherK, thanks to you and your Mom !

    I’m sure your wife’s folks gained the benefits of the trail your Mom helped start. Things have changed a lot since I started. I’m not on top of a lot of that as I try to stick to 11th Hour when I can.

  180. 180
    gogol's wife says:

    @Prescott Cactus:

    I’m back home and have to go to bed, but I will read this whole thread tomorrow. Thank you for opening up this discussion!

  181. 181
    Prescott Cactus says:

    @Wormtown:

    But, I think dying can be very difficult; it’s just a roll of the dice as to how hard.

    Wormtown, Very true, dying can be tough.

    Another thing I’d like to share is that anyone can advocate for the sick patient. Child, Parent uncle or sister. Scream until you think the patient is getting the care they deserve.

    Especially the late stage pain issue. Addiction is the least of worries. Certain drugs are known to assist the death process along. The are NOT given to assist the process by speeding it up, they are given to alleviate pain, stress and anxiety that the patient is feeling. Comfort is number #1.

  182. 182
    gogol's wife says:

    @EllenH:

    I have that on my list of books I have to read — when I can bear it.

  183. 183
    Prescott Cactus says:

    @amygdala:

    Except in threads like this, I mostly lurk, but really enjoy your posts for your humanity and graceful prose. I’m glad that awful day in 2004 wasn’t even worse with a family political battle, and that your Dad’s final ride was so fitting.

    Well said, from someone who mostly lurks. You are also pretty brainy ; – )

    THANKS for unlurking, and the database, which I’ll consume later !

  184. 184
    Prescott Cactus says:

    @Omnes Omnibus:

    We’re just setting him up for disappointment

    Think fastball, wait for the curveball.

    Tumbleweeds…

  185. 185
    Prescott Cactus says:

    @PurpleGirl:

    This comment isn’t about hospice care but is about allowing the patient to decide to die instead of hanging on.

    A work colleague’s husband was in a freak fire at their home….

    It’s close enough for me.

    Letting a patient “let go” as you stated is good for both the patient and the one delivering the message to a loved one. As a 11th Hour volunteer, we encourage “letting go”, because there is really no going forward. In death we are, as we were in life. Some are stubborn and want to hold tight. Others go gently into the night…

  186. 186
    Prescott Cactus says:

    @SiubhanDuinne:

    I am not in any way a religious person, but there is something amazing about the shift in energy when a person departs — I don’t know whether it’s that they stop breathing, or their heart stops beating, or their brain stops functioning, or the soul ascends, or what — but there is a decided difference in the presence of the person. You can tell in a split-second. It’s amazing, and miraculous, and one of the most awe-inspiring moments of the human life-cycle.

    I couldn’t have said that better and I didn’t. A true and wonderful explanation for that moment. Breathing cycles begins to stretch out past 30 seconds. . . then up to one every 2 or 3 minutes, but only a few. . . and then. . . something changes.

    I will be stopping by over the next few days. Archiving is a over this mans pay grade. I am a commoner here. I may grace the big stage once more, but. . . the end is near.

    Sorry for the shop talk.

  187. 187
    Prescott Cactus says:

    @WaterGirl:

    she can’t see, she can’t turn over, she can’t do anything, yet still she doesn’t let go.

    The human spirit knows no bounds. We had an 11th Hour patient that I visited on his 1st, 2nd and 4th day in our program. They didn’t make the call to early, this persons will to live was incredible. We don’t usually follow up to see if /when a patient dies. It may get disclosed by chance if you talk to someone in the know. I couldn’t believe I got a 3rd phone call on the fourth day. Trooper in the game of life and death.

  188. 188
    Prescott Cactus says:

    @Miss Bianca:

    Thank you for doing that work.

    You are very welcome !

    @SiubhanDuinne:

    I will be facing it again fairly soon, I think, with yet another elderly relative.

    May the journey be with comfort.

  189. 189
    eemom says:

    @Prescott Cactus:

    After being with more than a dozen who have taken that final journey, I have a feeling that it just doesn’t end with the clank of the coffin top and the sound of 6 ft of dirt hitting the lid.

    I think there is more out there. I’m not a Buddhist by any means, but I wish I had the discipline and kind heart to be. They believe that we keep coming back. I don’t know. I just don’t think it ends here. Forever.

    Thank you again. That’s kind of what I was hoping you’d say. I’m ok with not knowing WHAT is after….it’s just the assumption that NOTHING is, that upsets me.

  190. 190

    @jl: hospice is cheap compared to inpatient non ICU stays and petty cash compared to ICU

  191. 191
    Prescott Cactus says:

    @a hip hop artist from Idaho (fka Bella Q):

    By the time I was maybe 9 or 10, I’d experienced 3 people dying in our house.

    At the time it probably pretty tough. With age, I think we sand the rough edges of memory, but the experience lies within. How we move forward or if it leaves a healthy or frightening memory is beyond me or how that would be determined.

    My father lives in an independent living place. 400 people. They have a TV channel dedicated to birthdays, new arrivals and well, yes the departed. Most have a small memorial, coffee and cake get together in the lecture hall. There are no mysteries or questions my Dad has about his care. “Kick the plug out of the door after you kiss me goodbye” was one of my favorites. Another, “See if you get my ashes sprinkled on a toll road so maybe you can make some money on me after I go”

    Death is not taboo, it’s more like water cooler talk for us. The DNR is hanging on the fridge. The bright orange card is in his pocket. The changing faces ( and sometimes tables) at lunch time mean, someone’s gone. His experiences, my volunteer work have made it easy so far. I’ve had to make a couple of tough calls so far but I was lucky. I was also following his wishes.

  192. 192
    Prescott Cactus says:

    @EdinNJ:

    Appreciate the response. We understood what hospice was for, my issue was with the doctors that recommended it

    I’m sorry I didn’t understand where you were going with that. Doctors want to make patients better and are not always good with what may be seen as a failure on their part. I think they don’t get a lot in med school or always handle the dying part well.

    The whole switchover into hospice care is wide open thing and the chance for miscommunication and problems is great. Lots of chances for someone to drop the ball on the professional side. The family feels uncertain. Why now ?

    I’m very sorry things turned out the way they did for you and your family.

  193. 193
    Prescott Cactus says:

    @Richard Mayhew: Thanks Richard, for both the answer and for the opportunity to share and learn.

    You made a difference in someones life today. Mine, and I thank you.

  194. 194
    Prescott Cactus says:

    @gogol’s wife:

    I’m back home and have to go to bed, but I will read this whole thread tomorrow.

    I hope you had some coffee !

  195. 195
    Ruckus says:

    @Prescott Cactus:
    This is another good side to the VA. Most of the patients are older, I still see WWII vets, although fewer as time goes on. But my point is that most of the front line docs I see are in or finishing up residency so they are around 25-30 and at the VA mostly they see geezers, with geezer problems on top of maybe having wounds. You can see that this is an eye opener for them when they start their VA rotation. Treating people with dignity goes a long way to making them feel better, even if it doesn’t cure anything. Treating dying people the same way makes a tough situation about as easy as it gets.
    Just a side note. Most if not all of the people that I’ve known that were dying knew the end was close and were accepting of the inevitable if not it’s timing. It’s the rest of us who need to learn that.

  196. 196
    satby says:

    @a hip hop artist from Idaho (fka Bella Q):

    So I learned that death was what happened at the end of life, and grew up with the notion that it was both normal and not an event for which a hospital was required. Probably quite an unusual experience for a kid in the 60s, but I think it’s helped my views about death.

    I grew up in a similar way, though it was more a result of being Irish in an Irish neighborhood. We’re raised to know that life is finite and that death comes to all of us, hopefully after a long life but not always. We start attending wakes and funerals as babies. I was horrified to find out later that many of my friends from other backgrounds had their first experience of a funeral at their parents.

    In home hospice was a godsend to us when my mother died last month. It let her go out on her own terms, dignity and to a degree privacy intact. I’m grateful for that and all the hospice people who make it so for their patients.

  197. 197
    eclare says:

    @Prescott Cactus: Actually it was the Gawande article from The New Yorker mentioned above. Great article, I’ve read it more than once.

  198. 198
    Original Lee says:

    Hospice was so very very helpful when my dad passed. His dementia had been worsening exponentially the previous few weeks, and then he lost the ability to swallow. He was a week in hospice and I think had about as gentle a transition as could be. We were very grateful to the nursing home for not fighting the end-of-life directives (Dad was adamant about “No Tubes!”) and for telling my mom it was time to move him over to hospice – she was hesitant to make the call. It could have been so much worse. I know Mom was dreading the possibility of him spending his last years in a bed with nobody home upstairs.

    Thanks to all the hospice staff and volunteers. There are no words for what they did for us that last week of Dad’s life.

  199. 199
    J R in WV says:

    Back in 2011 Mrs J wasn’t feeling well one morning while we were at the beach in September. We went home early, and by Sunday she was odd, so I took her to the ER. At the counter when they asked her birthdate, she said 1913 (Really, 1949)! Turns out an illogical answer to those simple questions is a good way to get taken in immediately, you may be stroking, which needs immediate treatment.

    There is a happy ending to the story. You learn a lot being in a hospital with someone for 59 days.

    They had her back in a unit in about 90 seconds. After a while, 90 minutes or so, a ER Doc came out and asked if I had any indications she may have had pneumonia. Other than asking me to stop on the way out of Rehobeth Beach for some kind of cold meds, nothing, no coughing, no nose blowing, just quieter than usual, a little goofy.

    Well, it was community-acquired pneumonia, and she was vague from lack of O2. Then Septic Shock set in. She was put on a vent and moved to one of the MICUs, a small 8 bed unit in the teaching hospital, a unit of WVU. The next day our family Doc told me that she had probably a 40% chance of coming out of the hospital. She was on the vent for 21 days, and was packed in ice for about the first week.

    I spent lots of time with her, even though she was in an induced coma. I helped the RNs, mostly swell young men back from the ‘Stans with way too much trauma experience, as they moved her around in her bed, tried to make sure she was getting her regular prescriptions, which were crushed in warm water and shot into her feeding tube.

    I held her feet, mostly, which weren’t entubated, and talked to her loudly for 18 hours a day. One day a young surgeon we have known since he was in Junior Hi came in the room, he had been in the hall talking to other docs about a patient he was doing a procedure for, heard me talking, asked if the guy talking had a beard, came in to talk and offer any help he could provide. That was nice.

    I saw families with every response to their loved one’s impending death. A lady across the hall was on total life support, big family that first afternoon, church members and the minister that evening, turned off the machines around 11 pm, gone around 2 am. I met a young man whose only relative, his Aunt, who raised him, was in a coma. He could not let go. Would not let her go. He was still there when Mrs J and I went home.

    There were several small waiting rooms in the big hospital where the window blinds were drawn and the lights were out 23 hours a day. People lived at the hospital, and could sleep in there, and the nurses ordered extra meals for those folks, whose home was too far away or who couldn’t afford to commute. So the hospital took care of them, too.

    They got Mrs J weaned off the Vent after 21 days – it took about 48 hours. A few days later they moved her out of MICU4 to a regular room, in a cardiac recovery ward, so that she wouldn’t be exposed to infectious patients. The nurses were adamant about that, and would not allow admin to move her into a room with an infected patient, nor to move an infected patient into her room.

    Then she had a lung collapse, so a brief surgery to implant chest tubes into her left lung, and back into SICU a surgical recovery ICU, more nurses with lots of experience. She did well and was moved back into a regular ward in 3 days or so. A couple of weeks later, that lung wasn’t re-inflating on its own, and a senior chest surgeon told us he was going to go in with arthroscopic tools to patch the leak(s) in her lung, some surgical glue, a few stiches, 20 or 30 minutes, he thought.

    So I sat in the surgery waiting room, full of anxious people waiting to learn how their patient was doing, reading at first, then just waiting – for over 4 hours. When I saw the surgeon coming, he was pasty looking and sweaty. We walked back and forth in the hallway while he told me what had happened.

    The third (bottom) lobe of MRs J’s left lung was necrotic, doctor-speak for dead and rotted. There is no test for necrosis in a patient, they have to look and see it. He has spent hours cleaning her chest, sealing off the remaining lobes of her lung, spraying antiseptics around the cavity left, putting in a second chest tube. He thought it would be OK, only time would tell.

    I asked how common this was, and he said it was “Very, very rare!” Another doctor who is an old friend out on Colorado told me that was doctor-speak for “I have never seen (first Very) or heard (second Very) of such a thing!” I Googled for it late that night, and only found one article written by two Israeli doctors who had seen, between them, 3 cases in a combined 60 years of chest surgery, so rare is the right word.

    A couple more days in SICU again, back into the general population, great nurses, the same set of floor nurses. She got a small private room this time, and started walking down the hall with 2 nurses and a big CNA right behind her, he was in charge of keeping her from hitting the floor. At first just 15 or 20 feet. The first physical therapist showed up and told her it wasn’t humiliating to need a walker and supplemental oxygen for the rest of her life. She told him to get out! And send a real PT when you get to your nest!

    She still had a chest tube when she was discharged – I got a long and intense class review in care and treatment for sucking chest wounds, and the home health care RNs relied on me to help them with the care of her chest tube, as they hadn’t seen one in their work as home health care RNs.

    But they didn’t want her exposed to infections in the hospital, so they sent her home with me. And no walker, no Oxygen. Her left lung expanded into the void, the doctors were delighted with her recovery – they don’t get a total win in that situation very often.

    Happy ending, indeed., we’ve traveled, and spent months at 5,000 feet in Arizona, visited the Grand Canyon at 7,000 feet, friends’ mountain Colorado cabin at 10,000 feet, so her lungs are pretty good after all that abuse. More travel planned.

    But I saw a lot of hospice care, and remembered being with my Dad 5 years earlier as he faded away after a long and mostly successful battle with leukemia. It could have been different for her. It will come again. We both have power of attorney and DNRs on record.

  200. 200
    WereBear says:

    Thank you for saying what needs to be said, and for volunteering.

    I was blessed with an incredible grandmother who was both vocal and firm about these issues, having seen the dark side growing up. And things are getting so much better, and will continue to do so, as long as we look at things as they truly are.

    Having been through it done right and as messed up as a possibly could be, I would say that denial is the greatest enemy for everyone involved. Which can be tough when some family has been using it their whole lives, for everything, when it is for limited, short-term, situations.

    So when the wheels start coming off you have irrational behavior. If we know someone with this major dysfunction, be aware they are going to be the worse part of a difficult time.

  201. 201
    Sam Dobermann says:

    @Prescott Cactus: Thanks for doing this: I have a few little quibbles though:

    One popular myth is that you can have no surgeries or chemo. It’s wrong. If any type of medicine / surgery will make you more comfortable (removing a tumor from say the windpipe), thay are fine with that.

    Basically It is no curative treatment of the disease that brought you into Hospice care. Surgery in the case you refer to is palliative — defined as “relieving pain or alleviating a problem without dealing with the underlying cause.” A person can also get curative care for other problems. E.g. A person dying from some cancer can get treatment for other ailments.

    Medicare is experimenting in a few centers with allowing Hospice care with aggressive treatment like chemo to continue or be repeated to see if that will get more people to choose Hospice which they think will save money and get more people they type of care they need.

    Another: A DNR does not fix the problem of the over zealous doctor or ambulance driver. It is basically a cover your ass statement excusing the doc or other from liability for not doing some thing. In fact Hospice at home workers sometimes tell family if the patient dies while the hospice worker isn’t there, let the patient cool off before calling an ambulance else he/she will attempt resuscitation despite a DNR or family protests. I think some states even mandate they do so.

    While a DNR may help, it can end disputes with other family members. To be certain one’s wishes will be followed best get a detailed Durable Power of Attorney AND have a long conversation with whom you name in the power of what sort of thing you want in what sort of circumstances. I am rewriting my power to include if I am ever in a Catholic institution to move me out as quickly as possible. The Catholics feel duty bound to start respirator treatment and feeding tubes, etc, no matter what the patient or their representative wants.

    Anyway, thanks for what you do as a volunteer including your leading a discussion — for that is what you are doing — here. We need more of this, dealing with death and the dying.

    So do doctors. An interesting article detailing some of the problems is Commentary: “The Lake Wobegon Effect, a Natural Human Tendency to Overestimate One’s Capabilities”

    An annotated list of articles including some comparing length of survival with and without hospice care is there (if I’ve done the link right).

    I Hope you will write more. You write very well and you have been wonderfully responsive. I’m glad you will look for stragglers. Too often I write something and then don’t post because I realize it is a dead thread.

  202. 202
    jackie says:

    One thing I appreciate about my mother’s hospice care is that they called me regularly after her death to ask if I needed to talk or was in pain. Very comforting. I think it lasted about 6 months.

  203. 203
    laura says:

    My mother is in hospice with end stage dementia. Hospice volunteers have made her journey more comfortable. But the volunteer that comes in and plays a clarinet and guitar brings her joy. Music has been an important part of our family’s lives and depot her inability to speak, she brightens up when the music plays.
    My gratitude is immeasurable.

  204. 204
    Sky says:

    I just wanted so much to thank everyone here for writing their experiences, especially Prescott Cactus’s. I don’t post much though I read BJ daily, and this has been one of my all-time favorite posts. I have learned so much and sort of wished we were all together in the same room talking about this. A virtual room will have to do.

  205. 205
    Ruckus says:

    @WereBear:

    I would say that denial is the greatest enemy for everyone involved.

    This. Absolutely this.
    Some people just can not admit that there is an end. We make up fabulous stories to deny that truth. And even if the stories were true we’d still have an end to this life. Even if we come back as our best dream or worst nightmare, this one ends. That sounds harsh to many people, to just even say that but it really isn’t. We have but one experience here, we need to make the best of it we can. And you’d think that doesn’t make it easier when it’s you that is the subject but my experience is that it actually can.

  206. 206
    Prescott Cactus says:

    @Ruckus:

    This is another good side to the VA. Most of the patients are older. . . . .”

    Just a side note. Most if not all of the people that I’ve known that were dying knew the end was close and were accepting of the inevitable if not it’s timing. It’s the rest of us who need to learn that.

    I think it’s great that docs in the VA system get rotated to work with “the olds”. As intensive and grueling as a doctors training is, there is a belief that patient communication and the subject of death don’t get in depth coverage. A fantastic book explores this and so much more call “When Breathe Becomes Air” When Breath Becomes Air Hardcover – by Paul Kalanithi. Mentioned up thread, it written by a 36 year old neurosurgeon who gets a terminal lung cancer digonoises. Pretty heavy stuff, but I would highly recommend.

    I’m going to go thru the thread and compile a list of books & articles mentioned and post it below.

    On some level we all accept we are going to die. It’s a fact that couldn’t be truer and nothing will change it. Contemplating your very own mortality seems difficult for some. I now embrace death. I know it is coming and I am pretty prepared to let go, but just not today or tomorrow. It isn’t a close embrace either. I’m married and have a father I assist. The thought of leaving them now, in my mid 50’s seems early, yet I’ve already lived 4 years longer than my mother did.

    I feel that the ability to see and understand death enhances life. Say I have 10,950 days of life left. That’s where the roadblock is on the path that is my life. 30 years is a long time. But if I take that number and subtract one from it each day, I become more aware. Now that I’ve mentioned this, I think I’m going to do exactly that. I’ve been generous with this estimation, but I now have a exit point.

    THANKS !

  207. 207
    Prescott Cactus says:

    @satby:

    I grew up in a similar way, though it was more a result of being Irish in an Irish neighborhood.

    satby,

    I’m sorry to hear you lost your Mom so shortly ago, but am glad you and the family had good support during the experience.

    I was a Irish / German mutt, but experienced the celebration of life around death that you did. Likely you’ve heard the old joke “What is the difference between an Irish Wedding and an Irish Funeral”?

    One less drunk !

  208. 208
    Prescott Cactus says:

    @Original Lee:

    Hospice was so very very helpful when my dad passed.

    I’m glad your families hospice was positive. Especially folowwing your Dad’s directives of “No Tubes!”. Everyone should have their wishes on paper at a minimum. Having in depth conversations with those you’ve chosen to help is almost as important. It reinforces their knowlegde of your desires and gives them moral strength to be a better advocate for you if “the machine” tries to do something else.

    Your Mom’s hesitancy to place your Dad in the hands of a hospice is very normal. It’s having a reality forced upon you that you may not be ready to accept. . . and all the things that go with that reality too.

    Next Saturday, I’m going to be following up with another chat about death. I invite you to stop by. I’ve made a commitment to myself to answer everyones question. Bad, news is that it takes a while. Good news is you can always stop by later. I’m going to come back here till all is said and done. Probably a day or two.

  209. 209
    Prescott Cactus says:

    @J R in WV: Thanks for having the big heart and taking the time to share that story.

    I’m thrilled your wife is doing so well. I’m glad you can travel and enjoy life’s wonders.

    I love success stories !

  210. 210
    Prescott Cactus says:

    @Sam Dobermann:

    Thank you for your generous compliments. You touched many bases and covered them all well.

    (WARNING: Shameless pimping of a future thread alert)

    Next Saturday, 4pm Eastern we are going to have a discussion focused on death and some of the documents and paperwork we should all have.

    Calling the ambulance sometimes happens and the results are often just what the patient doesn’t want. EMT’s save lives, Doctors provide treatment to make people better and hospitals. . .well, they like to run up the charges. The hospice I volunteer for wants you to call them if the patient dies, not 911 or the police. No drama.

    The 11th Hour program is not always requested by families. They may not want a “stranger” involved. With my hospice and most others I would think, funeral homes and arrangements have already been chosen.

    If you don’t mind I’d like to drop your post into next weeks discussion as it will fit rather well over there.

    THANKS !

  211. 211
    Prescott Cactus says:

    @jackie:

    One thing I appreciate about my mother’s hospice care is that they called me regularly after her death to ask if I needed to talk or was in pain. Very comforting. I think it lasted about 6 months.

    Sorry about your Moms passing. Thats a very nice touch for them to follow up. I’m not sure my organization does, that but I will check.

    Grief Groups are fairly standard benefit of many hospices. My hospice will allow anyone to attend their meetings. So if your Mom passed away in California and you lived in Arizona, you could still benefit from a hospice run grief group close to your home. I don’t know if this is universal or standard.

  212. 212
    Prescott Cactus says:

    @laura: Where I volunteer they have a dedicated group of volunteers who work with dementia / memory / Alzheimer’s patients. They try to use the senses that are still high functioning and try and bring joy to the patient that way. Tactile sensitivity, like like soft rubber balls with squiggly tendons sticking out is a favorite.

    Music is great for a patient who enjoyed or was actively involved with it during their lives.

    A program like that is special because it allows the volunteer to share an interest of theirs with a family / patient that really enjoys it. A force multiplier, kind of. Should I practice my guitar for 3 hours in the basement alone or share in the delight of performing for some folks who would love to hear and see live music.

    THANKS !

  213. 213
    StringOnAStick says:

    Thanks for keeping an eye on this thread, Prescott!

    I know what we are flying to on Tuesday, and it is a dying person who desperately wants to get better, a son fighting his own cancer battle who feels guilty that his dad is dying and shares very similar denial and avoidance personality characteristics, and his girlfriend who is very stressed that her de facto FIL is on his way out. His girlfriend has been our blessing since both he and his father have had such health challenges this year; she is an angel. The issue I think we’re going to have to take control of is my husband’s brother is probably going to want to get more aggressive with medical care because he can’t accept that his demanding and unforgiving father is dying. My husband in the POA and medical POA, and we’re the ones with the most medical knowledge. My FIL has always been a chronically depressed guy and has been having dementia issues for a few years now, but he is terrified of dying and I suspect will resist it as long as he possibly can. It may be tough for this to be peaceful is he is as terrified as I’ve always known him to be.

    I’m going to spend some time researching what to expect from the actual dying process. I have read about it before, but as a point of interest, not as a dance I’m about to participate in. The hints to leave the room every hour or so is a good one, as is the realization that hearing is the last thing to go. I think I’m going to have to model the behavior that I hope the others can tap into so we can make it as stress free for their dad as possible, and of course I’m a crier too, so this will be tough. I promised him a month ago that I would come along the next time my husband came back for a visit, so I am going to keep that promise and try to do my best for everyone.

    Thanks again to everyone for all their stories, it helps a lot.

  214. 214
    Ruckus says:

    @Prescott Cactus:
    A couple of points.
    My mom decided that she was going to live to 91. No idea why or how she picked that number, she wouldn’t say. She was wrong, she lived just past her 95th birthday. I think she out lived everyone in her family. If I match her that gives me just over 28 yrs. I think I should go for it.
    My dad had Alzheimer’s. Looking back, knowing what I know now, he started showing signs around 65 yrs old. Lived for another 19 yrs the last few and hardest in a home run by 2 Vietnamese women. An exceptional place, with exceptional people. They both came to his funeral. They cared about him, not just the income. They did all the stuff that had to be done but they also cared. That’s humanity right there.
    Lastly, as I age, and I’m for sure doing that, and as things go wrong or get worse, I see in myself all those things I’ve seen in the people that I’ve seen dying. We all share two things in this life, we are born and we die. Everything in between is the transit from one to the other. We should make that transit as good for each of us as best we can. We owe that to each other, that we not only survive but we thrive. And that we go out with as much dignity as we can muster for a very un-dignified process. That’s progress. Everything else is bullshit.

  215. 215
    Prescott Cactus says:

    A hat tip to all who shared something to look into later

    I've added a link to each via Amazon, which includes a kickback to keep the lights on here.

    StringOnAStick:
    “Being Mortal – Medicine and What Matters in the End” by Dr. Atul Gawande

    Such a humane and important book about this whole topic
    .
    .
    .
    @WaterGirl: Grumpy Old Men “Lucky Bastard!” line
    .
    .
    .
    @a hip hop artist from Idaho (fka Bella Q): and also by @EllenH: Atul Gawande Wrote eloquently (as always) on the topic
    .
    .
    .

    @eclare:

    Long form in NYTimes, maybe by Gupta.

    I didn’t find Gupta, but did find a recent article by Jan Hoffman
    .
    .
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    @amygdala: L arge Medicare claims database study.
    .
    .
    .

    @WaterGirl: Book actually called On Death and Dying by Elisabeth Kübler-Ross.
    She first explored the now-famous five stages of death:
    denial and isolation,
    anger,
    bargaining,
    depression,
    and acceptance.

    Just a note for those who don’t read this one. It’s pretty much still assumed that you will go thru these 5 stages. Not necessarily in the given order and not every stage will take the same amount of time. YMMV say it well.

    .
    .
    .

    @EllenH:
    “When Breathe Becomes Air” by Paul Kalanithi Rated 1+ boxes of Kleenex needed
    .
    .
    .

    @amygdala: Gawande’s Being Mortal was also made into a Frontline episode

    .
    .
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    @eclare:Gawande article in the New Yorker

    .
    .
    .

  216. 216
    Prescott Cactus says:

    @StringOnAStick: It sounds like you’ll be flying into the perfect storm. Fortunately it should like you are almost fully prepared. You have an good advocate in the Son’s girlfriend. You said she’s an angel and it always helps to have one close by in these situations. You have the correct tools / power withe POA’s and the “person with the most knowledge wins”***

    Please know that he process of death is different with every patient.
    I’ll share some very very general observations I’ve had.

    The last week increased fatigue and sleeping including a decreased appetite.
    Patient eventually stops eating and drinking do to lack of desire.
    (ice chips if allowed and wet sponge thingee’s)
    Sleep becomes almost constant, though still responsive while awake.
    Full time sleep, still responsive to touch and lastly sounds.
    Patient becomes non responsive to any stimuli.
    2 to 4 days after last food and water active dying usually begins.
    The first sign of active dying is mottling (mark with spots or smears of color.) usually on feet and then hands.
    Life ceases with 12 to 24 hours.

    I hope this helps you on your journey. Peace be with you.

    ***An old saying a boss told us often.

  217. 217
    Prescott Cactus says:

    @Ruckus: You’ve got a great attitude ! ! !

  218. 218
    Prescott Cactus says:

    @eclare: From the New Yorker article you mentioned:

    It’s a long and wonderful article and captures snippets of patients in his book, also mentioned above.

    “A large part of the task is helping people negotiate the overwhelming anxiety—anxiety about death, anxiety about suffering, anxiety about loved ones, anxiety about finances,” she explained. “There are many worries and real terrors.” No one conversation can address them all. Arriving at an acceptance of one’s mortality and a clear understanding of the limits and the possibilities of medicine is a process, not an epiphany.

  219. 219
    Prescott Cactus says:

    @WereBear:

    Thank you for saying what needs to be said, and for volunteering.

    I was blessed with an incredible grandmother who was both vocal and firm about these issues, having seen the dark side growing up. And things are getting so much better, and will continue to do so, as long as we look at things as they truly are.

    Having been through it done right and as messed up as a possibly could be, I would say that denial is the greatest enemy for everyone involved.. . .

    You are welcome !

    Having a family member who is vocal and has communicated their desires, especially if it’s been for years is great.

    Denial usually leads to delay in getting into a hospice program. One of the key players pushes an agenda they want. The patient themselves being in denial isn’t easy either, especially if they can convince others to “play along”.

  220. 220
    Prescott Cactus says:

    @Sky:

    I just wanted so much to thank everyone here for writing their experiences, especially Prescott Cactus’s. I don’t post much though I read BJ daily, and this has been one of my all-time favorite posts. I have learned so much and sort of wished we were all together in the same room talking about this. A virtual room will have to do.

    Ah, wow. That’s very kind to say. This was a very emotional thing for me. Many stories touched me deeply.

    I video chat with my father same time every morning . This morning he didn’t answer the first three times I tried. . . All the stories posted above rolled thru my heart in those few minutes. Every day is a blessing and his time left is only a few years.

    I’m very glad you came out of the shadows and hit the”Post Comment” button. Thank you again for such a nice compliment.
    * * * *
    Post 215 has books, articles and movies recommended during post!

  221. 221
    Steeplejack says:

    @Prescott Cactus:

    Quick note: It’s When Breath Becomes Air, not “breathe” (verb).

  222. 222
    Prescott Cactus says:

    @Steeplejack: Thanks. My mistakes are immortalized as I have the standard 5 minutes to edit. As it was written, so it shall stay.

    I’m going to drop a list of some of the books that I feel are relevent to this conversation. This afternoon, I’m hoping !

  223. 223
    Prescott Cactus says:

    Almost all of the books about Hospice are by Elisabeth Kübler-Ross. She wrote 5 or 6, but stick with “On Death and Dying”. It is the best / first of it’s kind.

    The rest I have, I can’t recommend in a broad Hospice sense. Most are about living.

    Jill Bolte Taylor’s TED Talk video My Stroke of Insight is fantastic. She also has a book, same name. Here’s the videos description:

    “Neuroanatomist Jill Bolte Taylor had an opportunity few brain scientists would wish for: One morning, she realized she was having a massive stroke. As it happened — as she felt her brain functions slip away one by one, speech, movement, understanding — she studied and remembered every moment. This is a powerful story about how our brains define us and connect us to the world and to one another.”

    Also recommend Leo Buscaglia’s works. Again, more about living than dying.

    I was surprised when I looked on the shelf they were all mixed together. Then I wasn’t. They go hand in hand.

    Post 215 has books, articles and movies recommended during post!

  224. 224
    Prescott Cactus says:

    Time marches onward. If you want to leave a comment here it will be addressed. This thread is on hospice and will eventually die, but not yet.

    There will be a follow up post on “Death” Saturday, May 21st at 4pm Eastern.

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