Space Death, The Final Frontier

GUEST POST

Please repeat after me: “Prescott Cactus is not a lawyer and isn’t giving legal advice”. Thanks !
The paperwork I show below is usually available on the website your State maintains. The italicized, quote boxed wording below is from the State of Arizona forms on the internet.

So now death. The next step beyond hospice. Yesterday you should have completed all your plans about dying. It is a process and wether you come to it slowly and naturally or as quickly as you adjust the radio station on your boom box near your the shower. Providing a game plan will make things SO much easier for those left behind. They will also help to assure that your wishes are fulfilled and that you begin to realize that we are here for just a short stay on this spinning piece of rock.

Docs, Hospital and designee should have copies and you should have original of all of these.

* * * * *

You may want a “Durable Health Care Power of Attorney”. (AZ Example)

If you want to select a person to make future health care decisions for you so that if you become too ill or cannot make those decisions for yourself the person you choose and trust can make medical decisions for you. Talk to your family, friends, and others you trust about your choices. Also, it is a good idea to talk with professionals such as your doctor, clergyperson and a lawyer before you sign this form.

This lets the one(s) you chose guide you toward the light when you are unable to make the decision yourself. If your written request to Nephew Billy is to turn off the oxogen and defibrillator when things break bad, it doesn’t take effect as long as you are conscious. You still make the call. You are providing guidance to someone you trust who will hopefully follow your wishes if you are unable.

* * * * *

You may want a “Durable Mental Health Care Power of Attorney” (AZ Example)

The Durable Mental Health Care Power of Attorney form if you want to appoint a person to make future mental health care decisions for you if you become incapable of making those decisions for yourself. The decision about whether you are incapable can only be made by an Arizona licensed psychiatrist or psychologist who will evaluate whether you can give informed consent. Be sure you understand the importance of this document. Talk to your family members, friends, and others you trust about your choices. Also, it is a good idea to talk with professionals such as your doctor, clergyperson, and a lawyer before you sign this form.

This lets you decide who calls the shots when the brain train comes off the tracks. Choose wisely dear reader as it’s an important one !

* * * * *

You may want a Living Will (End of Life Care) (AZ Example)

Use this Living Will form to make decisions now about your medical care if you are ever in a terminal condition, a persistent vegetative state or an irreversible coma. You should talk to your doctor about what these terms mean. The Living Will states what choices you would have made for yourself if you were able to communicate. It is your written directions to your health care representative if you have one, your family, your physician, and any other person who might be in a position to make medical care decisions for you. Talk to your family members, friends, and others you trust about your choices. Also, it is a good idea to talk with professionals such as your doctor, clergyperson and a lawyer before you complete and sign this Living Will.

Think Theresa Marie “Terri” Schiavo. Make your wishes known. Make it easier for those who need to make important decisions on your behalf. Your Durable Health Care Power of Attorney would be able to make these decisions for you if they are present and available. If not . . .

* * * *

You may want a Letter To My Representative: (AZ Example)

Arizona law allows me to make certain medical and financial decisions as to what I
want in the future if I become unable or incapable of making certain decisions for myself. I have completed the following document(s), and I want you to be my representative or alternate representative for the following purposes.
(Initial or check one or more of the following):
_____1. Durable Health Care Power of Attorney
_____2. Durable Mental Health Care Power of Attorney

Allows you to name a Representative and an Alternate Representative for the above 2 positions.

*****

You may (or may not) want a Prehospital Medical Care Directive aka DNR or DO NOT RESUSCITATE. (AZ Example)

A Prehospital Medical Care Directive is a document signed by you and your doctor that informs emergency medical technicians (EMTs) or hospital emergency personnel not to resuscitate you. Sometimes this is called a DNR – Do Not Resuscitate. If you have this form, EMTs and other emergency personnel will not use equipment, drugs, or devices to restart your heart or breathing, but they will not withhold medical interventions that are necessary to provide comfort care or to alleviate pain.

IMPORTANT: Under Arizona law a Prehospital Medical Care Directive or DNR must be on letter sized paper or wallet sized paper on an orange background to be valid.

OK, if you are close to grabbing a seat in God’s waiting room you may want a DNR. If your gorgeous 30 year old body was just in a bad car wreck, you don’t want to have this card next to your drivers license.

*****

Two things that you should know before you go. Last Will and Testament or perhaps even a Revocable Living Trust. These are means in which to disperse your worldly belongings when you depart. IMPORTANT ! ! !

*****

Finely, about departure. We all go different ways.

Please know that the process of death is different with every person.

I’ll share some very, very general observations I’ve had.

Increased fatigue and sleeping with 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 within 12 to 24 hours.

Thoughts? Something to share ?

111 replies
  1. 1
    Prescott Cactus says:

    In a previous post last weekend I wrote about hospice and hospice care. It was a wonderful discussion, for which I thank you.

    I spoke of the importance of patients getting into hospice care early and how hard the discussion can be if there are “deniers”. Since last weeks post my Dad’s brother was re-admitted to the hospital. Six or 7th time since November and he’s near 90 years old. His children won’t speak of it nor will my uncle. Damn the torpedoes, full speed ahead (Don’t worry folks we’re just stopping for ice: Edward John Smith, 1850 – 1912) .

    I also mentioned my father’s slow decline to my old volunteer coordinator this week and explained physically where he is at today. Turns out he’s eligible to be re-admitted to hospice services for the 3rd time. A long talk after a visit to his brothers hospital room yielded “no” for an answer. His shortness of breath doesn’t bother him enough to want to wear an oxogen tube and the retention of fluids doesn’t bother him. He’s not in denial, he’s reached acceptance. He feels that any care is life extending and wishes to allow nature to take it’s natural course. (He’s upbeat and shows no signs of depression.)

    As you see, even with some knowledge and experience things don’t always go as planned.

  2. 2
    Nicole says:

    It was a great post last week; thank you. I mentioned in a post yesterday that my dad died last month. While his death was in his sleep, suddenly, at home in front of the TV (let us all be so fortunate), my mother died of breast cancer back in the early 1980s. I was a child, but I still remember how kind the hospice volunteers were- we formed a friendship with one of them that lasts to this day. And they made my aunt’s passing, 25 years later, so much better than it could have been. I still remember my aunt telling us about one of the volunteers saying to her in surprise, as the umpteenth friend who had come to say goodbye left, “Huh. That’s very unusual. Usually the people don’t all show up until after you’re gone.” That observation made my aunt laugh, and also feel very loved, in her final weeks.

  3. 3
    Shell says:

    As of October, my 94 year old mother took to mher bed. She absolutely refused to go to the hospital, so its a mystery when physical cause has sent her there. Right now, she’s kinda at step three of your list. She’s responsive and recognizes things when she’s awake, but she sleeps most of the time. Her appetite is still good and she makes it into the bathroom alone. But theres still the feeling a slow regression . Her doctor (makes once a month house calls) says he has no idea how long this can go on. Don’t know if hospice is appropriate or useful right now or to wait till things get worse. All I know is that this sucks, big time. As I heard someone else say, “Going downhill is an uphill battle.”

  4. 4
    Baud says:

    I didn’t realize this was going to be a series.

    I can’t believe this series doesn’t have a “Preparing for a Trump Administration” tag.

    A missed opportunity.

  5. 5
    Anonymous At Work says:

    I work in bioethics and while the legal mechanism is great, it is important for your representative to KNOW to be assertive in their DEMANDS on your behalf. Once a doctor detects doubt, they will turtle up and practice defensive medicine, meaning keeping the patient alive no matter the cost, expense, pain or waste involved. And the hospital’s legal counsel will back them up and force you to go to court.
    That is, UNLESS your representative knows to be assertive. This is not the doctors’ fault, or the hospital’s fault. This is a tough decision and second-guessing is common and they are, professionally and personally, on the hook for your second-guessing.
    Please note: THIS IS NOT LEGAL ADVICE. PLEASE CONSULT AN ATTORNEY IN YOUR STATE.

  6. 6
    Prescott Cactus says:

    @Nicole: Sorry to hear of your Dad’s passing.

    Death is kind of a teeter-totter and if the person dies quickly it is very easily for them but can be rough on those left behind. If disease or illness gives a warning, the person dying must mentally prepare themselves for their own death and possible suffering and fear of the unknown.

    In truth, death itself is always a bombshell.

    Glad you enjoyed last weeks article and that you’ve had good experiences with hospice.

  7. 7
    Prescott Cactus says:

    @Shell: You are fortunate to have a Doc coming out to do monthly visits. You can always have a chat with her doctor and mention hospice. If you could discuss it with Gram, you could have hospice come out and do an evaluation. They should charge for that.

    Hope things go as well as they can for you.

  8. 8
    Prescott Cactus says:

    @Baud: Hospice, Death and then next week I’ll be tackling coffin buying and do it yourself cremation and grave digging.

    Richard would pull the plug on that, me thinks.

  9. 9
    Prescott Cactus says:

    @Anonymous At Work: Very true. An example is the Prehospital Medical Care Directive aka DNR or DO NOT RESUSCITATE.

    The first actions of EMT’s aren’t to look for the DNR on your fridge when you collaped in the dining room of your Independent Living home.

    Having a vocal and strong advocate is important. Remember that you get to pick that person. You also get to give them all the ammunition they need by having everything on paper.

    Occasional conversations to reinforce your beliefs will let them know the importance of your desires. Signing and filing this type of paperwork can lead to unkind things.

  10. 10
    WaterGirl says:

    Well, I’m not ready to face doing any of the things you recommended in this post, but at least I made myself read what you wrote. That’s a start! :-)

    I have always known who my person will be if I ever fill out the paperwork – it’s one of my nieces, and I even talked to her about it years ago. I love my sisters, but they would completely do something that was against my wishes if their wishes didn’t concur with my wishes. April is the only person in my extended family who would be able to separate what I wanted from what she wanted. So I’m crazy not to take action on all this stuff, I know I am. Just not there yet.

  11. 11
    Baud says:

    @Prescott Cactus:

    do it yourself cremation and grave digging.

    He is acts has his own undertaker has a fool for a client.

  12. 12
    Prescott Cactus says:

    @WaterGirl: Small steps !

    Death isn’t easy, but you have began the process. Next time you see your niece Alice, tell her that you are thinking about (because you are) getting some legal paperwork together because you trust her judgement to follow your wishes.

    Then start looking for the form that your state uses.

    Small steps !

  13. 13
    Schlemazel Khan says:

    @Prescott Cactus:
    I have asked my kids to drag my carcass into the woods and bury me face down with an acorn in my butt. I figure that will make my body good for something. They seem . . . nonplussed.

    The wife & I have been discussing end of life/will stuff recently but have not done it formally. This series may be a good place to start from.

  14. 14
    Amir Khalid says:

    @Prescott Cactus:

    Hospice, Death and then next week I’ll be tackling coffin buying and do it yourself cremation and grave digging.

    To be followed, no doubt, by the Christmas in Heaven number from Monty Python’s Meaning of Life.

  15. 15
    Cat48 says:

    In a Hospice, can they really keep someone pain free?

  16. 16
    Prescott Cactus says:

    @Prescott Cactus: CORRECTION to Shell in post #7.

    They should NOY charge for that. Make sure upfront. Don’t give Medicare numbers or secondary insurance info without that assurance.

  17. 17
    laura says:

    My mom’s in hospice at the end of the long road that is dementia. I’m her conservator and had a 100 mile long telephone battle with the ER doctor after she fell and broke her hip at the Petaluma care facility she lives at.
    An on site xray didn’t show the rubbled femur so she was transported. The doctor insisted I give verbal agreement to begin a battery of tests and I wouldn’t. A highway closure delayed my arrival and the hospital kept calling with more frustrated demands. Upon arrival, she was comfortable and sleeping. The doctor came by to ream me for my refusal to treat. I OK’d and xray.
    When he called me over to view it with him,and discussed the unrealistic outcome of total hip replacement and rehab for a women who would not understand the pain of post surgical recovery and rehab he apologized and agreed that anything other than returning her to her familiar surroundings would be cruel.
    Thus began hospice and the additional services of local musicians -and topping off with morphine when her brow furrows in ocassional discomfort.
    I’ve been given a chance to prepare for the end and after. Some hard -like buying burial clothes, planning her service -avoiding the type of music that Satby referred to, and try and process this loss and accept this death with a humble heart of gratitude.
    My dad’s marriage of 61 years and sadness in single life he never wanted is such a hard heart aching topic.
    I so enjoyed your initial post Prescott Cactus and every comment came with a hot flood of tears. I thank you for your insights.
    This season of loss -friends, family and folks I only know on the interwebs, is an eye opening journey.

  18. 18
    Prescott Cactus says:

    @Schlemazel Khan: My wishes for near death require my wife’s assistance but she in not cooperative with my plans.

    I’d like to be brought to the desert with two 50 lb bags of Purina Coyote Chow. I will lay atop one and the other should be spread atop me. She is total No-Go.

    Not even the lift into the desert. I’ve got time.

  19. 19
    Prescott Cactus says:

    @Amir Khalid: If I could carry a tune…

  20. 20
    Mnemosyne says:

    @Cat48:

    They can come pretty darn close. Part of the problem with day-to-day pain relief is that usually the person needs to stay at least somewhat functional and be able to feed themselves, run errands, keep the house minimally clean, travel to doctor’s appointments, etc. If you’re in a hospice facility, they take care of all of that stuff, so they can turn the pain relief up a bit higher.

  21. 21
    Prescott Cactus says:

    @Cat48: The goal of hospice is to keep the patient comfortable. There may be a little space between pain free and comfortable, but not much (I hope).

  22. 22
    tastytone says:

    If there would be such a thing as angels, they would be Hospice nurses.

    I would add, re. the dying process, that both of my parents (passed from cancer, aged 65 and 70) were VERY active at night near the end: out of bed, hallucinating, “I have to go home”. This was also when the “visits” from the dead friends and relatives would happen (and in the case of my non-military, only mildly political father, “Iraqi kids”). I believe some people refer to it as “sundowners”, but this was different. My sisters and I called it the “night shift”–and being a night-owl anyway, the job fell my way. It lasted about a week in each case. It was surreal and difficult to say the least, but like the rest of the process, fascinating and beautiful at the same time.

    Long point made short: midnight to 5am can get crazy.

  23. 23
    Mnemosyne says:

    As one of the survivors who had to deal with this last year, I beg and implore everyone with an even slightly complicated family situation to hash all of this stuff out well before you get sick. There’s nothing like wondering if your dead brother’s estranged wife is going to show up at the funeral home and claim his ashes before you can get there with your power of attorney showing they should be given to his (your) mom instead.

    (FWIW, she didn’t. His ashes weren’t worth any money, so why would she want them?)

  24. 24
    Prescott Cactus says:

    @Baud: Truer words never spoken. Especially about the cremation side of that equation.

    Speaking of fools, a correction to my correction:

    CORRECTION to Shell in post #7 AND #16.

    They should NOT charge for that.

    Geez. Mayor of Moron City.

  25. 25
    eemom says:

    Some folks may have read, or would be interested in reading, this thoroughly researched and utterly heartbreaking piece that appeared in last Sunday’s NYT about Hart Island, New York City’s “potters field,” where over a million are buried.

    If you need a wake up call to do your pre-death homework, this would be one. On the other hand, as the article documents, the horrific “guardianship” process in NYC fucks over the old, sick and alone even when they HAVE made provisions.

    That piece has been haunting me all week.

  26. 26
    WaterGirl says:

    @eemom: Your recommendation, though quite sincere, has me thinking of something like “oh my god, this is disgusting- here, try it!”. Which, by the way, I have actually said. So I’m not judging.

  27. 27
    Prescott Cactus says:

    @laura: Thanks for the nice compliment.

    Having a Doc chastise you is terrible. Thankfully he came around and saw your point of view, but you suffered thru miles of pain and anxiety as you drove to the hospital.

    As Baud thoughtfully pointed out, he who is his own undertaker has a fool for a client. I think Hospice and Death will pretty much cover everything. On a serious note. Costco does sell coffins. Delivered right to the funeral home of your choice. So we have that going for us.

  28. 28
    Gelfling 545 says:

    @Anonymous At Work: As I’ve mentioned here before, my ex-husband died a short time ago. The staff at the hospital did everything possible to guilt my daughter into disregarding her father’s wishes. Thank goodness for my son in law who made it plain that the wishes would be followed. He is fortunately a person with whom few care to argue. He is not a large or loud or blustery type of person, just very firm and decided and remarkably persistent. Otherwise, I’m fairly certain the whole thing would have been dragged out to no good effect for anyone. One really does need someone who can resist the emotional pressure.

  29. 29
    Cat48 says:

    @Mnemosyne:
    @Prescott. That’s really my biggest fear, severe pain. I would hate to die that way. It would be hard on my only daughter as she freaks out when someone is in pain. I’m starting to write down items she needs to know in one place to give to her soon, etc.

  30. 30
    eemom says:

    @WaterGirl:

    Well, it is one of those difficult things that people SHOULD read, at least if they live in NYC. Though I wonder if things are any different or better in other cities for those poor people who die alone and/or impoverished. Sure ain’t a hot topic that gets a lot of media attention.

  31. 31
    Prescott Cactus says:

    @tastytone: Hospices nurses are angels. I volunteer if they need me. Nurses are on the front lines and the prognosis is rarely recover and pony rides. 40 hours a week is true devotion to a wonderful cause.

  32. 32
    Schlemazel Khan says:

    @Mnemosyne:
    And get it all in writing as well as telling people.

    My grandmother died 25 years ago after a series of strokes. She and my grandfather had a very clear understanding and talked with their kids about not wanting to prolong the process. When grandma became unresponsive and unable to eat granddad refused a feeding tube for her knowing she didn’t want one. The god dammed doctor guilted him into relenting by telling him it was not right and Grandpa was killing her by starving her to death. It took her about 3 weeks to die and Grandpa beat himself up over that choice the rest of his life.

  33. 33
    WaterGirl says:

    @eemom: Well, no surprise there since it’s not a shiny object. It was a sad day for journalism when “what’s in it for me?” became a driving force for the media. Clicks! Ratings! Access! (ugh)

  34. 34
    Prescott Cactus says:

    @Mnemosyne: thats part of the beauty of these forms. They force the conversation to begin, at least within yourself.

    If this “mini-series” had a goal in my mind, it would be that you, dear Balloon Juice reader and all of your loved ones were knowledgeable and prepared, both mentally and paperwork wise.

    The clash within families caused by death obviously occurs at the worst time. When we should be hold hands and sharing beautiful stories, not arguing over who gets the breakfast nook.

  35. 35
    a hip hop artist from Idaho (fka Bella Q) says:

    @Nicole: I’m sorry for your loss. The story about your aunt laughing is charming, and illustrative of how many good things hospice staff do in small ways. Hospice care made both my parents’ last weeks much more comfortable.
    @Prescott Cactus:

    The first actions of EMT’s aren’t to look for the DNR on your fridge when you collaped in the dining room of your Independent Living home.

    That’s true, and important to note. It’s why I’ll probably get a DNR tattoo in some thoracic region where it will be difficult to miss in such as situation.

    Occasional conversations to reinforce your beliefs will let them know the importance of your desires. Signing and filing this type of paperwork can lead to unkind things.

    W/r/t the bolded: huh?

  36. 36
    CaseyL says:

    I have no children nor nieces/nephews; my brother lives in Norway, my Aunt in Philly; Mom and my oldest/dearest friend in Florida. Any of them I leave anything to have to come schlep out to Seattle and deal with a bunch of stuff when they’re least able to.

    Ditto the durable and medical powers of attorney. I have wonderful friends here in Emerald City, but none close enough that I feel comfortable burdening them with that.

    But I have much beloved, spoiled rotten kitties who will need a home after I go – in absence of human children, they’re my biggest concern.

    I have the blank forms (my estate isn’t big enough or complicated enough to need a customized Will & Testament), but indecision has been keeping them blank. I know that’s dumb. Gotta buckle down and git ‘er done.

    I, too, would love to be buried naked deep in the woods and have trees grow out of me. I’ve wanted that for years and am delighted that it’s starting to be a “thing.”

  37. 37
    Schlemazel Khan says:

    @Mnemosyne:
    My sister and my cousin both worked as nurses on a terminal cancer ward. They explained that at some point the amount of morphine needed to kill the pain would kill the patient. What happened at that time depended on the doctor and family. These were the days before the so called right to life so it often came down to what the doctor thought the family wanted.

    These days they have to be a lot more careful but the choice is the same I guess

  38. 38
    Prescott Cactus says:

    @eemom: Thanks for sharing that article and I’ll read it later tonight.

    The process of dying without a will or Living trust is fairly simple. The legal system will reek havoc upon the estate both in the length it takes to settle things and cost. Somewhat of a Death Penalty for those without the proper paperwork. YMMV. If you are a spouse, you may have some legal protections. Remember, I’m not a lawyer or giving legal advice.

  39. 39
    a hip hop artist from Idaho (fka Bella Q) says:

    @laura: My thoughts are with you. That was a tough fight to have with a doc from that distance, but you clearly made your point. It’s not easy, no matter how old we – or they – are when the end arrives.

    @Gelfling 545: That’s horrifying, and sadly not an outlier, most likely. I’m glad for all of you that she had your son in law to back the staff off.

  40. 40
    tastytone says:

    @Prescott Cactus:
    I’ll never forget them, or forget about them when it’s time to donate. Beyond the obvious pain control, their infinite patience and willingness to explain to the rest of us (patiently, again and again) that what was happening was normal was pure gold. Strangely/not-so strangely, I get a similar vibe from the midwives my wife and I are currently working with. Gotta love the beautiful folks that help you on the way in and on the way out.

  41. 41
    Prescott Cactus says:

    @Gelfling 545: I’m sorry you recently lost your hubby and hope you are coping well and moving forward.

    Having that one person to advocate is so important. We all need to decide who that person will be. The one who spends 3 hours with the cable company for $3.95 or the passive person who lets the servers mistaken addition of 3 drinks slide on your dinner bill and figures they will just reduce the tip.

    One person. The point man. The person who will clear the path of any obstacles during your final journey.

  42. 42
    CarolDuhart2 says:

    My mother 10/26/1920-5/3/2016) did the best thing for all of us…she long ago prepaid for her funeral, gravesite, everything. She took $4k in a lump sum and paid for her funeral about 20 years ago. When she went, everything went smoothly except for a little bit about flyers for her service.

    As for me: diabetes and 5 heart stents (modern medicine is great) gave me a wakeup call. Earlier this year I began making out the necessary forms, and in the process of doing much more. Whether it’s one year, or 30 from now, knowing that its taken care of and that you will not burden your loved ones with having to make a thousand decisions is very important. Let the last memories of you be at least orderly ones.

  43. 43
    Prescott Cactus says:

    @Cat48: Hospice’s are based on palliative or comfort care. There is no concerns about turning someone into an addict, if they only have a few months to live. Let your worries drift away. Concentrate on getting your paperwork in order and having meaningful, occasional talks with your daughter about your wishes.

  44. 44
    Ksmiami says:

    @Cat48: yes my mom has worked as a hospice nurse and they get the morphine drip party started

  45. 45
    Prescott Cactus says:

    @eemom: I think it’s common lots of places. AZ tightened up some laws because a news expose revealed the shaft being given to the sick, dying and dead.

  46. 46
    I'mNotSureWhoIWantToBeYet says:

    In another one of RM’s recent posts, I brought up the topic of organ donation. Someone mentioned that it’s a good idea to let people know your feelings about that as well – just relying on a checkbox on your license might cause friction if you never talked about it, etc., with them. Sounds like a good idea.

    Thanks for this series RM and PC. It’s very helpful.

    Cheers,
    Scott.

  47. 47
    Prescott Cactus says:

    @Schlemazel Khan: I imagine that once a feeding tube is inserted it’s probably harder to remove it. Both physiologically and legally.

    I sometimes wonder if having someone who is a little detached from the immediate family, like a niece that WaterGirl is suggesting isn’t the perfect choice. Someone who loves you are cares for you but a little further out of the sibling / spouse /parent relationship.

  48. 48
    Mnemosyne says:

    @Prescott Cactus:

    I would definitely recommend having a more distant relative or friendly lawyer be the executor of one’s will. My brother was the executor of my dad’s will and there are still some hard feelings because the will was complicated and my dad hadn’t bothered to sit down and discuss it with my brother beforehand (and my brother is not a lawyer).

    Add in the fact that my brother was in denial about how much he was grieving and you have a bunch of hurt feelings that are still getting worked out.

  49. 49
    Prescott Cactus says:

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

    W/r/t the bolded: huh?

    Another example of the consequences of me trying to type and breathe at the same time.

    Occasional conversations to reinforce your beliefs will let them know the importance of your desires. Signing and filing this type of paperwork can lead to unkind things.

    Bad bolding on my part. My thought was to convey that while it it is great to have all the paperwork above signed and locked up in a filing cabinet, It is best to not make decisions, write it down and forget it.

    Your wishes need to be reinforced and discussed on occasion so that everyone knows how you feel. The conversation with your designee should be more to the point in specific terms and perhaps often if you are in God’s waiting room.

    So my bad. Having paperwork great. Forgetting the “death thing” and then hiding them in a safe for 12 years and getting sick is bad.

    Thank you for adjusting my clarity.

  50. 50
    a hip hop artist from Idaho (fka Bella Q) says:

    @Prescott Cactus: That makes much more sense now. I was thinking “signing and filing with doctors” rather than in a drawer. And it’s an important point.

    People around you need to know what you want, and they can’t if they’ve not seen the paperwork and you haven’t talked about it. As a result, so what they may think best may be not at all what you wanted.

  51. 51
    Prescott Cactus says:

    @CaseyL: Having no close family nearby makes these decisions tough. You live a wonderful life if your main concern is your kitties and who will take care of them. You can probably accomplish that goal by picking which Emerald City pal loves cats the most.

    @Schlemazel Khan:
    As far as having a tree grow out of me, I’m warming to the idea. Beats cremation or coyote buffets.

  52. 52
    Cat48 says:

    @Schlemazel Khan:

    I’ve heard that too. That is why I’m afraid of severe pain while dying.

  53. 53
    I'mNotSureWhoIWantToBeYet says:

    @Prescott Cactus: Dunno. Cremation has lots of advantages. Lugging a body out into the woods would seem to be much more of a chore than taking a cremation urn with your loved one’s remains out there with an acorn of your choice. Probably easier on the executors and friends emotionally as well. :-)

    “Why the hell did I’mNotSure have to weigh so much anyway!! I wouldn’t have agreed to doing this if I’d have known he’d swell up like Orson Welles!!” ;-)

    That said, of course everyone should have the opportunity to think about these things and make their own decisions.

    Cheers,
    Scott.

  54. 54
    MazeDancer says:

    If you’re getting a lawyer to prepare a medical POA or proxy, make sure you also get a Durable Power of Attorney for all affairs, legal and financial.

    If you are going to become responsible for some family members, say, you must have this. The other person – or you if it’s for you – can change it at any time while they are mentally able. But when the mind goes, that’s it.

    My mother, who is and has always been a sadistic monster masquerading as a sweet Southern Society Lady is now, somewhat rapidly, over the course of weeks, gone from batty, with slight dementia, to big loss of faculties.

    Fortunately, there is a POA. With that, you just make things happen. Even if the person has an iron will and refuses to do what you make happen. They have no choice. They have to accept what is best for them.

    The week before she went to the ER, Scottrade had frozen her account because she seemed not competent to the guys when she visited them. With a POA – I am now in charge. (And, how great that Scottrade does such a thing to protect people)

    She is in on her way to the best Assisted Living, with innovative cognitive therapy, and lovely surroundings that long term care insurance and her savings can buy. And she will be screaming all the way. But, POA, there is no choice. Without it, don’t know what would happen.

    If you’re going to end up doing your civic duty to keep your parents – or some other friend or family – off the streets, and, most importantly, not harming others, make sure you get a Durable Power of Attorney now. No matter how young they are. Or how healthy. Do it now.

  55. 55
    Prescott Cactus says:

    @tastytone: Everyone gets round trip ticket !

    Wonderfully put analogy about hospice and midwives and thanks for remembering with a donation.

    Donation raises another thought to my mind, which I completely forgot about.

    Organ donation. This is usually handled with the issuance of your state ID or drivers license. The decision is up to you and you should make it now. When your slowly cooling body is beginning to deteriorate is not the time to have the hospital donation coordinator bothering your grieving family with a request for your remains.

    If you aren’t creeped out about it, sign it and tell those close to you that after you die you are going to fulfill your dream of going to Med School. Free ride, no tuition.

  56. 56
    Cat48 says:

    @Ksmiami:

    That’s reassuring :)

  57. 57
    chopper says:

    @Baud:

    the next post will be about the afterlife.

    SHIT THERE ARE FORMS FOR THAT TOO?

  58. 58
    Prescott Cactus says:

    @CarolDuhart2: I’m very sorry you suffered the loss of your Mom so soon from now. Her taking the time and effort to make all the arrangements bring a feeling of warmth and love to me.

    Congrats on beginning the process yourself. Set goals for each document and have the conversations you need to. It will bring peace to you now and in the future. One less thing to worry about.

    Stay healthy ! ! !

  59. 59
    Prescott Cactus says:

    @I’mNotSureWhoIWantToBeYet: Thanks Scott !

    All it would probably take is one close relative screaming to put a kibosh on your wishes.

  60. 60
    NeenerNeener says:

    @tastytone: My Dad went thru that; the hospice nurse called it “Terminal Agitation”. And it started about a week before he died, too.

  61. 61
    Mary G says:

    Both of your posts have been excellent, PC. You’ve reminded me that I need to find a back-up executor /designated person and update my forms, will, and trust. It’s hard as I have no family available.

    I was able to have my mom at home on hospice for her last five weeks. The nurse, bath aid, and social worker were angels. When more drugs were needed, they were delivered to my door. I still donate to them five years later.

  62. 62
    Prescott Cactus says:

    @Mnemosyne: I’ve had a ringside seat to members of my extended family go head to head. The father to a brother and sister with all the right documents and the wrong designee. The designee didn’t want to do all the work and gave it to one of the siblings to run. Exactly what Dad didn’t want. Been to court a few times. . . Crazy stupid.

    My intention was never to guilt anyone into getting this stuff taken care of. I think this discussion has shown that doing a little in advance saves a lot on the ass end. If the prop falls off your boat, it’s still going to keep going for awhile, just slower and without direction.

  63. 63
  64. 64
    chopper says:

    @NeenerNeener:

    once the organs start shutting down things get weird. when my dad died at home under hospice he started seriously hallucinating at the very end.

  65. 65
    Prescott Cactus says:

    @chopper: If you are given something of great value to yourself, It is usually requested the you sign away your soul. Beware the creature who gives you treasure and hands you the pen & paper.

  66. 66
    Prescott Cactus says:

    @Mary G: Thankfully for your kind words and your donations to hospice.

    Even with family available it can be hard, but without it’s even harder. Having someone be a designee is like giving them an extra set of your house and car keys.

  67. 67
    Big Ole Hound says:

    @Mary G: We had the same experience with my son and he made the choice to get hospice help when the drug trial he was in didn’t work. He was in their small home unit with a full staff when we got the call that he was “actively dying” so we were at his side 2 hours later when he died. First time I had heard that term.

  68. 68
    nutella says:

    The OP is very right that everyone needs to get health directive forms signed and distributed first, and then write your will.

    Things to think about after that to make things easier for your survivors:

    1. List all your bank accounts.
    2. List all your automated payments.
    3. List auto-renewing subscriptions and memberships to be cancelled.
    4. List everyone who needs to be notified.
    5. List health insurance and disability account details.
    6. Describe your preferences for funeral and burial.
    7. If the will is pretty general about who gets your possessions, write up a more detailed list of preferences. (Check with a lawyer to make sure this extra document won’t gum anything up.)
    8. List email and other accounts and their passwords.
    9. List contact details for lawyers, accountants, and doctors.
    10.List locations of important documents like mortgage or lease.
    11.Find keys to lockers and safe deposit boxes and document their use.

    And discuss these things with your survivors as you make decisions so they know where to look for these lists and what’s in them to avoid surprises.

    And make sure there’s some secure place to leave all this info so it falls into the right hands.

    Especially if you live alone, think about how your family will be notified if you are taken away by ambulance. Maybe leave contact details with neighbors? Or landlord? Or stick an easily-read notice just inside your door? It’s hard to guess what the EMTs can and will do.

    This is a lot to think about and a lot to do so it will take a while, both to make decisions and to write them up and review them with your survivors. I’ve just got to the point that I have collected the blank health directive forms and decided what to put in them, consulted a lawyer about a will but done nothing with his recommendations, and determined after a very long period of indecision who to make the beneficiary of the will. This took months! And I’ve got a lot more work to do, but I really don’t want to leave my relatives with a big pile of problems.

  69. 69
    Prescott Cactus says:

    @Big Ole Hound: I’m sorry about the loss of your son. I imagine the loss of a child is one of life’s hardest things to bare.

    I hope you are doing well.

    Peace.

  70. 70
    Prescott Cactus says:

    @nutella: You covered a whole lot of the little details that I omitted. You are well on your way to dotting your i’s and crossing your T’s. Everything you mentioned was right on.

    Keep up the good work and thanks for the detailed descriptions !

  71. 71
    Tastytone says:

    @Prescott Cactus:

    you are going to fulfill your dream of going to Med School. Free ride, no tuition.

    Perhaps the most realistic, coherent plan for free college and/or college debt I’ve heard this entire primary process. (And I agree–I’ve been a donor since I could legally say “yes”).

    The advice in this thread is so solid. Thinking about it and organizing now will save SO much angst for everyone involved. For folks like me, it’s also nice to know I still have a modicum of control over the situation when it happens :)

  72. 72
    Miss Bianca says:

    @Prescott Cactus: I’d be cool with passing like that. Or contrarywise, if I die at home alone with the dogs, I have no problem with their helping themselves to sustenance while they’re waiting for someone to notice. Tho’ that would be a bit grisly for whoever came to the house to check on things, to be sure.

  73. 73
    Prescott Cactus says:

    @Tastytone: I commend the Balloon Juice community for the 2 discussions we’ve shared. Both built around a topic that is important, but a bit taboo. Inject a lot of laughter, throw in a couple tears and everyone walks away a little wiser.

    Death and hospice are anxiety producing subjects and being able to read and reply can’t hurt.

    Thanks to everyone who has participated !

  74. 74
    Anonymous At Work says:

    One more tidbit, since people are bringing it up. Desensitize your kids/proxy into allowing death over intensive efforts. My dad watched his sister make what he thought were mistakes with his father. He has told us every manner of joke, including more than a few totally inappropriate ones, in an effort to beat my brother and I into submission so that when the time comes, we CAN pull the plug, mentally and legally.

  75. 75
    Miss Bianca says:

    @Mnemosyne: My brother *was* a lawyer – still is, actually – and it *still* caused hard feelings. He should never have been appointed executor, not after the hard feelings caused by the fact that another brother had essentially talked my old man out of most of his money by the time he was dying – invested in a business scheme that, if run properly, actually *should* have made money. So, one of my sisters is mad as a hornet about that, figures my other brother is tarred with the same sort of brush, and starts talking everyone else into the notion that my brother the executor is committing malfeasance. A huge, ugly mess and rupture that almost 20 years later is not completely healed.

    So yeah – write that will out on something other than some cocktail napkins about two weeks before you die, and get a more distant relative – or nonrelative – to be executor. Sounds like sound advice to me.

  76. 76
    MomSense says:

    Wow, I’m going through this in real time with my best friend and her family. There are language barriers, family wih conflicting beliefs and opinions about end of life care, and a small business to run at the same time. I spent all day there today and will be there as I can most days after my work day ends.

    Yesterday was the funeral for my cousin so I’m pretty spent.

    Thank you Prescott Cactus for this series.

  77. 77
    Prescott Cactus says:

    @Miss Bianca: I wonder how long you could go undiscovered with auto pay of utilities and auto deposit for pension or Social Security.

    “Nah, I haven’t seen Bill and Sue for a while, but it looks like they’re home.”

    Overflowing mailbox would probably be the first give a way.

  78. 78
    Tastytone says:

    @Prescott Cactus:
    Totally…A very different perspective and experience for everyone. But the commonalities that exist are so worthy of discussion. Kudos.

  79. 79
    NeenerNeener says:

    @Prescott Cactus: there was a news story not too long ago about a woman who died in her garage and wasn’t found for almost 6 years.

  80. 80
    Prescott Cactus says:

    @MomSense: @MomSense:

    There are language barriers, family wih conflicting beliefs and opinions about end of life care, and a small business to run at the same time.

    Sounds like the perfect storm. All that and your cousin passing away. Get some rest as it sounds like you are in caregiver mode. Being “spent” is a major symptom. Take it easy when you can.

    You are very welcome ! This series would have been a blip if it wasn’t nice folks help push the dialogue along.

  81. 81
    MomSense says:

    @Prescott Cactus:

    Thank you! I’m thinking music and sleep tonight.

  82. 82
    WaterGirl says:

    @Prescott Cactus: I know it’s been a week, but I’m pretty sure there were a lot more than just a couple of tears shed on the thread last week. I agree with the point you are making, though, and I appreciate your bravery in jumping into these topics at BJ.

  83. 83
    Prescott Cactus says:

    @Miss Bianca: Doesn’t it just make way too much sense to have the son who is a lawyer be the appointed executor. It sounds great on paper. Life doesn’t always fit on a piece of paper.

    It’s very sad when an event that should bond families tighter together actually helps pull them apart. That’s the most important take away from this I can think of. Folks raise their kids until they leave us for heaven and then all shit breaks loose when Ma and Dad are gone. Even when they do all the right things.

    I hope the healing is complete soon. Take care and peace !

  84. 84
    Prescott Cactus says:

    @Tastytone: Merci !

  85. 85
    Prescott Cactus says:

    @MomSense: Full chill mode whenever you can. Even if it’s just 10 minutes in the car between work and your friends small company. Those little soul recharges keep the battery from getting to low and work wonders.

  86. 86
    Prescott Cactus says:

    @WaterGirl: Thanks so much. With tears comes laughter sometimes. To have you be able to approach the subject when it isn’t on your Top 1000 things to do list is heartwarming to me.

    I wish everyone was as dialed in on this as nutella in Post #68 is. But we aren’t, not even me. I caught a couple things I’ve got to update.

    It’s a process. A slow one. small steps. Do what you can, when you can. Go look at all the links to the documents you need. Just a quick look and begin the mind process of figuring whose name you’d want in each space.

    Go for it !

  87. 87
    Miss Bianca says:

    @Prescott Cactus: thank you for the kind thoughts, and thank you for your thought-provoking posts.

  88. 88
    Prescott Cactus says:

    @Miss Bianca: Your welcome ! I wish I had a broader strike zone than the one – two combo of death and hospice. It was nice to share with everyone.

  89. 89
    StringOnASick says:

    My husband and I have been visiting his father, who entered hospice last week, but he got much better after the precipitating event, then managed to get out of his chair(he hasn’t been able to do that for 2 years!) 3 days ago and immediately fell. I suspect a concussion is what has made him extra loopy ever since, so I’m glad we had one good day. Hospice says his vitals are still strong and he isn’t even transitioning yet. He gets agitated and fixates on single words like “hot, hot” or pleading “help me, help me”, so more oral morphine is given. He is a guy who 2 weeks ago demanded seconds and thirds and now eats a few bites if any, but his brain seemed a bit better this am and we saw some if his old personality and short sentences today before he got tired and went back to pleading. Every time he woke up I explained that he had hit his head and had been asleep for 2 days, the explanations seemed to calm him. I am sure the agitation and pleading is because hevus confused and he was the ultimate rational, intelligent man who never, ever wanted to be in this position. I feel for my husband; I’ve got medical training and can step back a bit and see symptoms, what he sees is his dad begging him to help him but can’t say what he needs or wants. It has been a rough few days, and last night my husband’s brother says he has found new tumor evidence for his ultra rare lymphoma that is apparently not responding to chemo. We will lose their father soon, and his 55 year old son may soon follow.

  90. 90
    WaterGirl says:

    @Prescott Cactus: Maybe this can set a precedent. With all the talent we have at balloon juice, I’ll bet there are a number of people who could do two or three guest posts on some topic. Maybe you will be a trend-setter!

  91. 91
    Prescott Cactus says:

    @NeenerNeener: Missed this. 6 years. Yikes !

  92. 92
    Prescott Cactus says:

    @WaterGirl: Moi ? Trendsetter ?

    All you’d have to do is send an e-mail to a front pager (upper right hand corner under “Quick Links” ) and get them to approve the story proposal or idea. Then write it up. This had a lot of links so I had to run it thru an HTML reader to make sure I didn’t have any hanging tags, which of course I did. Formatting and such is easy.

    The first time I sent it to Richard and he told me when and what time it would be published. The second time, being a diva, I demanded the same time, same day for this second post. I also got the blue M&M’s removed from the bowl. I made the commitment to answer most every question. A real live front pager can’t / couldn’t / shouldn’t do that. These were one timers, so I just ran with it. It was fun.

    I would love to learn the inner workers of a presidential campaign.

    Baud, where are you ?

  93. 93
    I'mNotSureWhoIWantToBeYet says:

    @StringOnASick: That’s rough. :-(

    There was a RadioLab show that may help a tiny bit with your FIL, and help give you some comfort. Bus to nowhere (if you haven’t heard it before). It’s touching and well done.

    I’m very sorry that your brother-in-law is seriously ill too. There’s rarely a good time… :-(

    Be good to yourself while you are there for them.

    Take care,
    Scott.

  94. 94
    Prescott Cactus says:

    @I’mNotSureWhoIWantToBeYet: I had a post to Stringonasick which is unable to be posted and was eaten by the machine as Spam.

    Scott, thanks for sharing that Radio Lab link. I’ll listen up later tonight !

  95. 95
  96. 96
    a hip hop artist from Idaho (fka Bella Q) says:

    @StringOnASick: Man that’s rough. Dad and then brother. It’s really hard to explain that to a (grown) child that it’s not pleading, but kind of agitation.

    I have a friend who’s mom has had mild dementia for years, and is safe warm and happy in the facility where she’s at, but she’s getting close to the end. He said sometimes he goes to see her and 5 minutes later she tells him it’s time for him to go. A couple of times she’s asked him “can I die now?” and I told him to tell her yes. He looked horrified, but I explained that she might be asking his permission.

  97. 97
    Ohio Mom says:

    @nutella: This is a good list, thanks.

    Ohio Dad and I re-did our wills, POA’s, living wills, etc. last year but if anything really were to happen to either of each of us in the nearish future, all the loose ends you list wold really trip the survivor up.

    The reason we are up to date on the paperwork is our son on the autism spectrum. If he inherits anything, there goes his government financial supports (Medicsid, Waiver, SSI). To be disabled is to always be sure that you have less than $2,000 directly in your name.

  98. 98
    a hip hop artist from Idaho (fka Bella Q) says:

    @Prescott Cactus: The Van Halen brown M&M rider was actually included in the contract as a tell, to demonstrate whether the venue had read the complete contract. It was in the early days of massive stage shows at stadiums and other big arenas and the structural and electrical specs were important to safety. So finding brown M&Ms in the dressing room cued the road crew to double check everything, and sure enough, they usually found issues at those venues that could have gone really sideways. It wasn’t the diva move it’s been widely regarded to be, and was in fact pretty clever. I’d link, but I can’t recall where I read that. I correct people whenever it comes up, just as I do with the McDonald’s coffee case.

  99. 99

    @WaterGirl: btw, that is sort of what I thought I would have done when I got started… 3 months and 25 posts until the exchanges were good to go… oops

  100. 100
    Miss Bianca says:

    @a hip hop artist from Idaho (fka Bella Q): It’s in David Lee Roth’s autobiography, for one source.

  101. 101
    Prescott Cactus says:

    @Richard Mayhew: Thanks for letting me share something with the community.

  102. 102
    Prescott Cactus says:

    @a hip hop artist from Idaho (fka Bella Q): Wonderful advise, but saddening to have Mom say, “It’s time for him to go” after a 5 minute visit. She probably has no concept of long the visit has been.

  103. 103
    Prescott Cactus says:

    @Ohio Mom:

    To be disabled is to always be sure that you have less than $2,000 directly in your name.

    Oh geez. That’s messed up.

  104. 104
    a hip hop artist from Idaho (fka Bella Q) says:

    @Miss Bianca: That’s a good source! I’m sure that wasn’t where I read it, but I’ve no doubt about where my now-forgotten source got it.
    @Prescott Cactus: It’s exactly because she has no sense of time, I suspect. And I think she tires easily.

  105. 105
    Prescott Cactus says:

    @a hip hop artist from Idaho (fka Bella Q): Ingenious about the “brown M&M rider”. Never knew who pulled it, but it’s fascinating to hear their real motive.

    Mickie D’s case has always gotten me in trouble. “Oh, they should have known the coffee was hot.” “Who puts hot coffee between there legs”. Repeated scaldings with no desire to change pattern was what I recall. Refresh me if I’m way off base.

  106. 106
    Prescott Cactus says:

    @Richard Mayhew: I’m glad you’ve stuck around !

  107. 107
    a hip hop artist from Idaho (fka Bella Q) says:

    @Prescott Cactus: You’re right, except it was worse than that, even. Not scaldings but 2nd & 3rd degree burns. McDonald’s required the franchisees to sell coffee at a dangerously hot temperature – bad burns in seconds. They’d been sued multiple times and were warned and knew of the risk,(hundreds of complaints) but continued based on the economics of the risk of payout – it was low compared to how much coffee they sold. The temperature was policed by HQ pretty actively.

    The plaintiff had a hideous injury – 3rd degree burns of thighs and labia, requiring multiple grafts. She was willing to settle for the cost of her medical bills and the company told her to go screw. Discovery showed that there were 3rd degree burns in some of the hundreds of cases but no warnings. Some jurors said after trial that it was the callous disregard of safety that led to the punitives (2+M).

    And she was 79 years old, a passenger in a parked car, not driving as the urban legend has it. Trial testimony established that full thickness burns to skin would occur in under 10 seconds. The company actually deserved a higher punitive loss, in my view.

    So you were right, but it was even worse than your summary.

  108. 108
    Prescott Cactus says:

    @a hip hop artist from Idaho (fka Bella Q): I didn’t remember the details, I just knew it was bad. Not that bad though.

    That’s terrible bad. Thanks for the mind refill !

  109. 109
    opiejeanne says:

    @Prescott Cactus: Oh, I learned a lot about buying caskets and arranging funerals and burials, having buried both of my husband’s parents and both of mine.

  110. 110
    opiejeanne says:

    @Prescott Cactus: The bills she asked McDonald’s to pay were less than what they had paid other customers with similar but lesser injuries. Why they decided to single her out is beyond me.

  111. 111
    way2blue says:

    What about POLST (Physician Orders for Life-Sustaining Treatment)? I’ve been asked to fill one out for my 98-year old mom…

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