A couple of years back, I had the great good fortune to hear Dr. Arthur Kleinman, who holds professorships in medical anthropology and psychiatry at Harvard and Harvard Medical School, AND is a former director of Harvard’s Asia Center – what an underachiever! :-) – speak on “Caregiving and the Moral Experience.” His talk really inspired me, and I’ve been a fan of his work ever since.
In an article in The Lancet entitled, “Caregiving: The Odyssey of Becoming More Human,” he writes movingly of his own experiences taking care of his late wife Joan, who suffered from Alzheimer’s disease. And he says of caregiving in general:
Caregiving is also a defining moral practice. It is a practice of empathic imagination, responsibility, witnessing, and solidarity with those in great need. It is a moral practice that makes caregivers, and at times even the care-receivers, more present and thereby fully human. If the ancient Chinese perception is right that we are not born fully human, but only become so as we cultivate ourselves and our relations with others — and that we must do so in a threatening world where things often go terribly wrong and where what we are able to control is very limited — then caregiving is one of those relationships and practices of self – cultivation that make us, even as we experience our limits and failures, more human. It completes (not absolutely, but as a kind of burnishing of what we really are — warts and all) our humanity. And if that Chinese perspective is also right (as I believe it is), when it claims that by building our humanity, we humanise the world, then our own ethical cultivation at the very least fosters that of others and holds the potential, through those relationships, of deepening meaning, beauty, and goodness in our experience of the world.
Caregiving is hard, and often goes unrewarded, unappreciated, and even unrecognized. But this thread is in honor and recognition of the many caregivers–of humans, nonhumans, the sick, the elderly, and the young–within the Balloon Juice community. Please tell us your story, update prior stories, and especially to share your tips and advice and support.
PS – don’t forget the Writers Thread, which TaMara and I will do at 12:30 today.
Aimai
Very pertinent thread.
Hillary Rettig
Thanks!
cmorenc
Having just gone through the final three weeks of my mother’s now-terminal decline, and sat with her the last several hours while her body slowly shut down and finally expired after ah hour or so of scary labored “death rattle” breathing – I have had a very personal lesson in just how hard and yet important this sort of caring is. My very supportive-of-her-mother-in-law wife (herself a physician) and I had to make some very hard decisions (affirmations really) of my mother’s wishes to cease further attempts at curative treatment and give palliative care only (water + lorazepam for anxiety/ pain), which included what amounted to voluntary starvation by my mother and withholding of her anti-hypothyroidism meds (synthroid). We were fortunate to have gotten an out-patient hospice service involved a few months earlier – their presence and reassurance in helping us stay the course and monitor the progress of mother’s decline was essential toward our maintaining peace-of-mind throughout the process of caring for a dying-of-natural-causes loved one, in a situation where more aggressive medical intervention might have bought a few more months, but only marginal quality of life, given the state of her dementia.
RSA
@cmorenc: What a hard lesson. But thanks for sharing it with us.
MomSense
My mom had surgery Tuesday in Boston so I took the week off to be caregiver. Gearing up for round two in a couple months which should be a much longer process.
MomSense
@cmorenc:
Sending hugs to you.
Hillary Rettig
@cmorenc: Thank you so much for sharing with us. I wish you and your family peace. I know the whole BJ community does.
Hillary Rettig
@MomSense: How is she doing?
How are YOU doing?
cmorenc
BTW: we withheld the synthroid because mom wouldn’t / couldn’t any longer swallow meds in pill form, there apparently isn’t any oral liquid vs pill form of it, and mom had declared during her hospitalization that she didn’t wish any further injections or IVs.
Hillary Rettig
@cmorenc: I don’t want to ask a lot of questions right now, but any info or suggestions you want to share will be valued. If, at some point, you want to put them together in a post, I’ll post it.
cmorenc
@Hillary Rettig: Thanks Hillary and all. The end result was that we were at peace with the whole thing when it happened, and it was lots easier to go through, which isn’t the same thing at all as “easy” on any absolute scale. While I’m not fond generally of funeral home’s arts at prettifying dead people for display – because mother was to be cremated, it was required that we go there to confirm the identity of the body – and I’ve got to give them kudos for gently cleaning her up and fixing her hair such that for the first time in years, both my brother and I could see in her 95-year old face the echos of her attractive appearance as a much younger woman.
Hillary Rettig
…and (again, only when the time is right; no pressure) tell us who your mom was and what she stood for.
Scout211
Alzheimer’s disease is such a horrible and painful experience for the family members. My mother died in 2003 after 8 years of very rapid decline early and then in the final two years, bedridden.
My appreciation is for my father, who cared for her in his home and then visited her daily for the four years she was in assisted living. He was a rock. And this surprised all three of his daughters. Prior to this, he couldn’t even make his own cup of tea. My mother had catered to him in that 50’s housewife kind of way. He really stepped up to the plate and lovingly cared for her for nearly a decade.
And this also is in appreciation of my amazing BIL, who did so much for my father when he began to decline physically and cognitively prior to his death in 2015. BIL was there for my father in so many ways. We will always be grateful to him for caring for his FIL like a son and like a brother to us.
Caregivers are amazing people.
emiesty
@cmorenc: I too accompanied my mother on her journey Thank you for sharing so insightfully
Hillary Rettig
@cmorenc: glad they knew what they were about.
I remember how good my dad looked, after he died. really at peace for the first time in years.
i’m sure makeup and lighting helped, tho.
Hillary Rettig
@Scout211: Thanks for sharing, and a wonderful illustration of Kleinman’s point that caregiving helps us develop into our full self.
Yarrow
I’ve been a caregiver for my elderly parents for several years now. My mother died earlier this year after a short illness. So now it’s just my dad.
Thank you for linking the article. I’m going to share it with a friend who is the caregiver for his dad with Alzheimer’s. This part really resonated with me:
I found this to be very true. You have to be present with the person you are caring for and meet them where they are. They may not be who they were or capable of doing what they used to do, but you are both still there. And you meet each other where you are. It is a lesson in living in the present. In truth, that’s all any of us have yet we often do not live that way. Caregiving is such a present occupation that it’s hard to forget. Or if you do, you learn that lesson all over again.
MomSense
@Hillary Rettig:
She’s doing really well except that she cannot drive which is tough in a rural area. I’m trying to figure out how to keep her from going stir crazy while I’m at work this week.
Hillary Rettig
@Yarrow: Very nicely put. Being in the moment is something I personally am not very good at. I’ve had only mild caregiving experiences – we fostered teenagers (pretty independent) – and I cared for a very good friend who was very ill for a few months and think I did well at it. But it is so devalued by our culture, and actually opposed by the culture (which seems to be all about NOT being present.)
Good wishes to you and your dad.
Hillary Rettig
@MomSense: i don’t know how rural she is but I’m thinking there are often plenty of people willing to drive / visit. Have you tried contacting a local church or senior center if one exists.
Or, just get her on Twitter. That should take up some time. ;-)
raven
@cmorenc: Just before we left for the Phoenix National Veterans Cemetery my step-mother handed me two urns. When I asked about the second one she said “It’s Molly (his beloved bale lab), he wanted her buried with him.” So there are two dogs, one lab and one sea dog, in his space.
cmorenc
@Hillary Rettig: I’ll be glad to. My biggest brief suggestions are:
1) If you have been granted medical care power of attorney e.g. via a health care directive made by the loved one while still competent – you’ll be needing to make some VERY hard-headed decisions in an Alice-through-the-looking glass type of environment, where choices that would have seemed heartlessly cruel are now humane, and choices that would have seemed humane are now heartlessly cruel – and you’ll find yourself second-guessing how your reactions and decisions will be viewed by others.
2) As soon as you recognize that a loved one is in the slow process of a terminal decline – even several months ahead, get a good outpatient hospice service involved. All that’s required for medicare coverage of the service is a likely probability that the patient is within the last 6 months of life; they don’t necessarily have to have e.g. cancer. The hospice service will help support you as much as your loved one get through the Alice-through-the-looking glass environment you now find yourselves in.
3) Do the nuts-and-bolts of prearranging the funeral on a pre-need basis) such that you are not making decisions under more emotional stress than is inherently involved. If you aka the loved one is considering cremation, GET THE NECESSARY AGENT AUTHORIZATIONS REQUIRED BY LAW SIGNED AND WITNESSED. Otherwise, you may be forced to assemble-in-a-hurry a majority of the required relations (often your brothers and sisters) at the funeral home to give permission, which can get very awkward if different among them have different ideas about the ahem…arrangements.
Hillary Rettig
@cmorenc: I’ll post this in a future Caregivers post, OK?
Dog Mom
Even a few years past, my experience of aiding my mom after her stroke seems overwhelming – so many additional tragedies happened – continuing medical issues and a system working against us in so many ways, family strife, good friends dying – expected (from there own illness) and unexpected. Every time that time I thought this can’t get worse, then it did.
Sunday afternoons offered some comfort. My mom was a retired art teacher, still actively doing her own work prior to the stroke. After the stroke, she refused any thought of working on anything. Eventually, I bought her some watercolor crayons and a desktop easel to set up on her tray. I did not inherit the artistic ability, but she could not help but teach me. She did a series of ‘fantastic birds’ – and while she was not happy with the quality, she eventually allowed me to display them on the mantle.
aimai
@cmorenc: I am just so sorry you have had to go through that, cmorenc. My husband is going through this at long distance, in more ways than one, with his father who has dementia and parkinson’s but who is still living at home with my mother-in-law who isn’t in great shape herself. The only thing worse than going through it with a love one is going through it at long distance, without any power to influence the situation or ameliorate it.
Yarrow
@Dog Mom:
That has been this past year for me. I would just laugh and laugh at people who thought they were being kind when they said, “It has to get better! It can’t get any worse!” It was like some kind of a curse. Every time they said that it seemed to get worse.
You have my deepest sympathies and I can offer a few nods of understanding. It is a hard road. I’m glad you found some light through the process. The paintings sound lovely.
Hillary Rettig
@Dog Mom: thanks for sharing. right after the rather ethereal Kleinman paragraph I quoted is one where he talks about just how hard it is, in very concrete terms. He mentions family strife, etc.
The part that angers me is how the system often gives us such poor choices. There are things about my dad’s last six months (15 years ago) I really regret, but we were all doing our best at the time. (And one of our advisors, my cousin, is a comptroller at a nursing home!) It stinks that society can’t provide better options. (But, you know, tax breaks to billionaires, etc.)
I’m always impressed by the creative problem solving some caregivers do – like you did with your mom – getting her to teach you so as a way of reconnecting with her art.
M lober
@Hillary Rettig: best wishes to all with these hard decisions. My 89 year old mom just went through multiple organ failure after a fall but was saved medically. Even though I have medical POA it was such a blessing she survived and we could talk about her near death afterwards. Now I know for sure she does not want dialysis and some more details that I would not have beef sure if. She has a don not resuscitate which we are going to update. I know it would be hard to stand there and not ask medics to try to save her but it is what she wants. We must honor.
aimai
This book, which I have not yet read, was written by some friends of my parents. It gets rave reviews and she is really a very extra-ordinary person, as was he:
The Majesty of Your Loving
The author: Olivia Ames Hoblitzelle is a writer, therapist, and dharma teacher. She taught at the Mind/Body Medical Institute, affiliated with Beth Israel and Deaconess Hospitals, where she pioneered how to bring meditation, yoga, and cognitive therapy into the medical domain to treat stress-related and chronic illness. She helped to develop one of the first training programs in Mind/Body medicine in the country and trained health professionals through Harvard Medical School. Her teaching and training are inspired by over thirty years of practice in psychology, Buddhist meditation, and the wisdom traditions. Having taught contemplative practices in a wide variety of settings from government agencies to school systems, she now focuses on elder issues, spirituality, and aging. Olivia has graduate degrees in psychology from Lesley University and in history from Columbia University.
northquirk
Thank you so much for sharing this. My dad passed away very peacefully, surrounded by family and lots of love last night. The hospice nurses and caregivers at the memory care center in Austin were amazing. The helped my mom and the rest of our family navigate this difficult time and taught me so much about life. Our country is really terrible about caring for people on pretty much every level. My dad’s life work was helping people; his career was focused on Veterans benefits, mostly in Alaska. These last few days of his passing have renewed my resolve to do more with my life to help create a more equitable society. Fortunately, my job now allows me to do that.
I know my mom, dad’s sister (who’s also a nurse), and all the amazing caregivers who helped my dad will appreciate this article too.
EriktheRed
I’ve never had to care for a terminally ill loved one, but I have a son who is physically fine, but is mentally disabled. The diagnosis is autism, but that’s really just kind of a blanket diagnosis for conditions they haven’t come up with a specific name for yet.
He doesn’t talk, doesn’t seem to grasp the concept of the toilet and has a tendency to get into things and make messes like a baby. Oh, and he’s going to be 25 this year; older than dad was when he married mom. Obviously it’s been tough at times. In fact, there was a short period when I didn’t even like my own son. Getting a little older and chilling out a bit in general cured me of that, thankfully, since he’s still dad’s little boy.
Right now, our biggest worry is how he’ll be cared for when his parents or too old to do it full-time. Living in a blue state which is being run crappily (IL) on both sides of the aisle sure isn’t helping our confidence in his future.
Yarrow
@Hillary Rettig:
Sometimes all the choices are crappy, though. System or no system. You choose between this terrible option, that terrible option and this option over here that is also very bad but perhaps slightly less bad than the others. So that’s the one you choose. And then your family members, who aren’t there and who aren’t on the front lines making the day to day decisions, yell at you for making a “bad” decision. It can be so hard.
There are a lot of improvements that can be made in the system, but even if the system were perfect the challenges and choices are sometimes still very hard. .
Tenar Arha (same Tenar, more Nameless Ones)
My Dad’s made it home & now under hospice care. He’s definitely shutting down & withdrawing on the good day/bad day plan. Basically where some days he’s sleeping & refusing to really eat or drink. And others where he’s more alert & will drink, even if all he’ll eat is Ensure & broth based soup. so far the good outweigh the bad, but I suspect if we get a run of 2 days without really drinking that’s probably going to be the “I’m done” signal from him.
@cmorenc: Thanks for the funeral planning tip. Forgot to add: my condolences. G-d my brain is melted half the time lately.
Eunicecycle
I would also like to highly recommend hospice care. People may have the impression that calling hospice is giving in to dying, but it is really about living. My dad was given a terminal diagnosis last January, and he lived in his own place and was very independent until 10 days before he died in October. He got to have a big 90th birthday party and attend the 90th birthday party of one of his best friends. He still drove his car until the day he went into the hospice inpatient facility, which was lovely. While it is still hard thinking about, I think it was as good an experience as it could have been, thanks to the hospice caregivers.
Hillary Rettig
@M lober: I’m so sorry about your mom’s experience. What a hard time, but what a valuable yield from it.
This is another example of just how sharp (mentally, morally, etc.) caregivers must be. These are very tough decisions – maybe the toughest. But it’s horrible, and unfair to all involved, not to make them.
Hugs to you all.
Yarrow
@northquirk: So sorry for your loss. What a nice way to honor your dad to help people as he did. Wishing you light as you navigate the next days and weeks.
Hillary Rettig
@aimai: Thank you for the recommend! It certainly seems like a book that would help many people.
Edit – just checked out the description and it looks amazing.
Hillary Rettig
@northquirk: I’m so sorry for your loss, and hugs to you and your family. Your dad sounds like he helped many people.
ThresherK
@Eunicecycle: My late mother worked at the first Hospice in the state, decades ago.
Spousal ThresherK is an LCSW*. Many days I’m a big part of her self-care.
(*No, she was never my therapist. Why do people keep asking that?)
northquirk
@Yarrow: Thank you. I feel very grateful to be the daughter of such a wonderful person. I’m not religious, but I do feel blessed.
Hillary Rettig
@EriktheRed: Thanks for sharing your story. ::sigh:: A very different caregiving challenge from those we’ve been discussing. I wish you and your son so well – and I hope that you (like all caregivers) have some good community and support.
Hillary Rettig
@Yarrow: oh, I know that.
These kinds of caregiving issues are a kind of extreme example, but there are lots of situations in life where there’s not one “perfect solution” – but only a bunch of imperfect ones. Nevertheless, people really struggle looking for just that.
Particularly hard when the consequences of a wrong choice can seem so serious. But we can all really do our best.
STILL, American society sucks for not providing many better options.
Hillary Rettig
@Tenar Arha (same Tenar, more Nameless Ones): Best to you and your dad and your whole family during this difficult time. Sounds like you’re being very present, and Dr. Kleinman would approve. :-)
Hillary Rettig
@ThresherK: Hospice workers are the best.
cmorenc
@Hillary Rettig:
Yes – please do post any of my posts to this thread so far that may be useful to others.
EriktheRed
@Hillary Rettig:
Thank you. We’ve had good support until he turned 22. Since then, good programs to give him something to do out of the house have been practically non-existent. At least we still get a little financial aid from the state (which that POS Rauner has already announced he wants to get rid of) so his mom can stay at home with him fulltime and dad doesn’t have to work 12-hour days to keep the family fed and housed.
Emma
@northquirk: My condolences on your loss. It sounds like his final moments were peaceful and loving, which I think is the best last gift we can give them.
Emma
@cmorenc: Absolutely co-signed. When my mom started deteriorating and it was clear that at some point we wouldn’t be able to care for her at home we put in place everything we could, including getting copies of her old do-not-resuscitate papers from her primary, lining up people to help at home while we made final arrangements for a nursing home, etc. Fortunately — and it sounds terrible to say it that way, but after seeing a member of my own family linger on, in pain, being revived because his daughter, a woman of fifty-something, couldn’t “live without her daddy” I think that a quick peaceful slide into death is a good thing — mom simply found her own way to tell us she was ready. And we gave her our blessing for her departure. All the paperwork at the hospital was in place, nurses and hospice aides were wonderful, and we didn’t have to launch into the bureaucracy of death at that moment.
cmorenc
@raven:
Ultra-cool about your dad and his dog. I would consider having that done with myself and my aging Italian Greyhound, except I suspect she would rather, given a choice, have her ashes buried down at the beach just on our side of the property-line with our eccentric next-door-neighbor’s cat graveyard (complete with little level-to-ground granite markers). Plus, if my wife out-lives me, she will probably have other notions about my final resting place.
Neldob
There was a good article on a hospice and approaching death in the nyt. Long though, but worthwhile. Thanks Hillary, it good to see care givers given some credit.
Aleta
The ‘present moment’ (s) with my mom were beautiful things that happened in between all the difficulties. It was easy to miss them when I was worrying and stressed, but now they are my favorite memories.
Louise B.
Internet hugs to all of you who accompany your loved ones on their final journeys. My FIL passed away recently under the care of a superb hospice program, and I can’t say enough good things about the way they helped the family. However, FIL was living in a non-hospice care facility, and a decision was made to keep him there because it was familiar. After a couple of weeks, it became clear that the nursing staff of this facility was not following the pain medication protocol prescribed by hospice, and his children had to have a temper tantrum to get them in line. Once they started following the protocol, his constant pain relented, and he passed peacefully after a few days.
Monala
My mom has been a very active and energetic senior, even into her 80s. But in the last year, she has had some health setbacks, and lost a couple of good friends.
My sister spent Christmas with her, and called me as soon as her plane landed back home. She told me that my mom’s spirit has declined in the last year. She went on to say, “I have accepted that I will likely be her caregiver, because I’m the only one [our of siblings] without spouse or kids, and I live closest to her.”
“So what do you need from me?” I asked.
“To be able to vent to you when I need to.”
So I told her I’d be that for her. For those of you who have been the primary caregiver for a parent, what would you need from your siblings? (I live on the opposite coast from my sister and mom, so being able to go there often isn’t really an option)
narya
I have lived alone for most of my adult life, and, especially at some of the most difficult, alienated, lonely moments, it was very important for me to have a lot of plants. I know that isn’t in the same solar system as the hard work you all are doing–my only comment is that it’s important to take care of SOMETHING, even if only a bunch of plants. I have fewer now (and am generally less alienated and lonely :-) ), and until October I had a cat as well, but the point remains.
And a shout-out to my brother and SIL: I am 900 miles away from but they are near my (86- and 81-year-old) parents, and do an awesome job helping out. Luckily, my parents–though held together with duct tape and baling wire–keep chugging along, but they do need the help and support my brother and SIL and nephews provide.
Aimai
@Monala: speaking for myself while venting is nice it can be painful for you and her. Hard not to take it psersonally. If I were you (and the other siblings) I woukd collectively take on the task of offering tabgible support and opportunities for self care for your sister:massages, groceries, prepared meals. Being support care for your mom means less time (and money), less freedom, to take time away for self care. It may be that you guys look at a calendar and propose (eventually, when its necessary) to pay for sister to take a specific spa day/weekend/week with coverage supplied by the other siblings. This is not a form of direct payback–where your money buys you out of the relationship,or an employer-employee thing but rather a kind of gift from you to her that recognizes a debt that can never be repaid.
Dog Mom
@Yarrow – Thank you for the kind words and thoughts – I hope the my wish of strength and peace for you is not a curse.
@Hillary Rettig – Thank you for the post – I have the article on my reading list.
@EriktheRed – I have friends with an 11 year old Autistic son – I worry for his future, but luckily his is starting to talk and interacting with others. I hope for medical advances as well as a society that provides a caring future for all special children.
cmorenc
@Hillary Rettig: In my earlier posts, I referred to some approaching-end-of-life caregiving decisions as needing to be made from an “Alice through the Looking Glass” perspective where what is normally thoughtfully humane becomes cruel, and vice versa. A specific concrete instance from my mother’s final three weeks will be helpfully illustrative to others of exactly the kind of thing I’m talking about.
In the initial couple of days after my mother’s release from the hospital back to the assisted-living facility she’d resided in for a dozen years – my wife had obtained some “boost” high protein drinks, in an effort to get some calories into her despite my mother’s near-complete lack of appetite or willingness to eat solid food. Fine if my mother was willingly requesting such (she wasn’t) – but it quickly dawned on me that the net effect of getting her to drink “boost” would actually be to prolong the inevitable by a few days to possibly as long as a month, but without any net improvement in my mother’s extremely limited actual quality of life. And so, being the one vested with the health-care power of attorney, I firmly insisted that she and the CNA aids follow this rule: what my mother HERSELF asked for (beyond water) – i.e and not merely her giving in to the nagging insistence of others – she could have. OTHERWISE- nothing, period except the water she did frequently ask for. I stated that if my mother suddenly developed a wish for a really good steak, I would have run out forthwith to Outback (if open) or the the 24-hr grocery (if not) and grilled it at home and taken it to her. She did ask for oatmeal a handful of times, and it was given to her, and she ate 3-4 bites, and also asked a couple of times for sips of orange juice – given to her, and coffee (despite the fact that the final hospital visit was occasioned by vomiting coffee blood emesis from her intestinal tract) – ok b/c I knew she would only take a couple of sips.
That was a very hard decision, even though I knew it accorded with my mother’s wishes and inclinations. And I had to brave it through not getting hung up on the extent to which anyone else thought i was being mean, or perhaps just trying to hold down the expense of her final illness by trying to speed up rather than slow down her terminal slide. But what would another two weeks have bought but mostly uncomfortably miserable further mere existence for my still very conscious and interactive but severely demented mother? NOTHING. But you are very much through the Looking Glass being in the situation having to both decide such matters and making them stick against the inclinations of possibly disapproving others inclined toward nurturing where normal nurturing impulses are actually counterproductive to the person’s best (and even desired) interests.
Suzanne
@Monala: Care giving is very hard financially, too. My mom was her parents’ caregiver because her siblings lived on the other side of the country, and they didn’t help out, money-wise. So she ended up not just giving up her free time to cook and clean and etc etc etc, but she was the one to pay for a lot of the expenses. As a result, she’s now in really bad financial straits……and lives with me, where that cycle is repeating itself.
So if you and your siblings can pay for a maid service, or grocery delivery, or cabs/transportation to doctor appointments or activities, or take over some of the bills if your mom doesn’t have that covered, that would be really helpful. Remember that your sister may end up having some effects to her career that disadvantage her financially, too.
elizadin
@cmorenc: I second the recommendation to get hospice involved sooner rather than later. I would add, too, to try to find a non-profit one, and to ask around for friends’ recommendations for hospices. Also, hospices always need volunteers–consider adding that to your to-do list before you need one. I am a former hospice nurse, who worked for great places and for substandard ones (all outpatient). The only other thing I would add to this thread is to engage the services of an elder care attorney as soon as your parents (or you) are starting to slow down. Having all the legal aspects covered can make the end much more manageable, I promise.
Personal rant: Not that it will happen under this (ugh) incoming administration, but adding social security credits for unpaid care workers–usually women who earn less to begin with–would go a long way towards offsetting how many women are really in dire straits as they age.
Ohio Mom
@EriktheRed: Doesn’t he get SSI, that is from the Feds, does not go through the state government, and seems to be safe for now — it is not funded from the SS Trust fund, it has its own funding stream, which I do not completely understand but am working on learning about. Nothing is more complicated than the Social Security system.
For those who don’t know this, SSI is for people with disabilities who will never fully support themselves and you are eligible when you turn 18. SSDI is for people who have worked 40 quarters and are now too disabled to work. Both programs turn down the majority of first-time applicants — then you have to file an appeal. But if you brought EriktheRed Jr. to the initial interview, I think the application would be approved without further ado (well, there would likely be some further ado because it seems there is always another piece of documentation needed, there is a big red tape aspect to SSI).
My nineteen year old, who is on the spectrum and relatively higher-functioning, gets both Medicaid through the state of Ohio (knock on wood, we will be going through the annual review soon) and SSI. Your son may also be eligible for food stamps since he is an adult.
I know, obtaining these kinds of supports requires a lot of hoops to be jumped through. I know a couple of families who have either moved to a different state (New Jersey and California) or have considered moving to a different state just to be where the benefits are better. That is not an option for my family, and anyway, I would have very mixed feelings about leaving my little homestead.
@Hillary Rettig: I sometimes think we need an autism/disability parent post every now and then. There seem to be a lot of us here.
RSA
@Monala: Aimai and Suzanne give excellent suggestions. I’ll add that along with the time and money burdens, some primary caregivers find themselves seriously isolated, to the point that it can bring on depression and physical ailments. If you can think of any ways to alleviate that (though remotely it’s hard) it would be worthwhile.
Yarrow
@Monala: Just an FYI, if your mom hasn’t been screened for depression, it’s a good thing to add to any doctor’s visit. Depression in seniors can manifest differently (sometimes can show up as pain) so maybe something to talk to your sister about, in case she’s accompanying mom to doctor’s appointments. Getting it treated can help a lot. (Your sister mentioning that your mom’s spirit had declined prompted me to mention this.)
As far as dealing with your mom and sister (and any other siblings), a few thoughts.
1. Be honest about the relationships you have with your siblings (and they with each other). As you deal with your mom aging, childhood patterns often reappear. Be aware of them. If you know these patterns can derail conversations and what’s best for mom, figure out how to deal with that.
2. Be actively involved but generally defer to the sibling who is closest and doing the majority of the work. They make the hard decisions on a day to day basis. It’s easy to criticize from a distance and hard for your sister to have to manage things day to day.
3. Be quick with appreciation and offer it in whatever type your sister will appreciate best. The occasional surprise gift as a thank you is a nice pick me up during the grind of being a caregiver.
4. If the caregiving becomes very involved, insist on your sister taking breaks and work it out with your other siblings to fill in for a weekend or week or whatever.
5. Talk up front about the options for moving mom into some kind of assisted living or bringing in hospice or whatever so your sister isn’t having to make those decisions all by herself in an urgent situation.
6. Get on your mom’s doctors’ forms so if you have to fill in you are allowed to get medical information and talk to them on your mom’s behalf.
7. Do the things you can do from a distance – researching assisted living places, researching doctors, shopping for a needed item, etc.
From a friend who has terrible siblings:
8. Don’t show up unannounced and take mom somewhere without checking with your sister, the primary caregiver, first.
9. You may see things that your sister is doing that you don’t like; don’t spend the majority of the time criticizing your sister’s decisions. You’re not there. You may not understand some of the complexities. Ask questions before criticizing.
10. Contribute financially if you are able.
11. Remember your sister is a person, not just a caregiver. Treat her like one.
LAC
@cmorenc: wow. Thank you for sharing this. My father in law died in his home, as he wished, and hospice assistance was invaluable. I am trying to get my mother to talk about her wishes but years of my father’ narcissistic personality sucking the oxygen in the room and now with Alzheimer’s, it is a frustrating conversation. She doesn’t see herself as any kind of priority. However, I keep asking – some days are better than others.
workworkwork
@Yarrow: This.
My wife has issues communicating as part of her MS (trouble completing sentences, remembering words, etc.). So I’ve learned to pay attention to her body language, gestures and facial expressions as a second channel of communication.
LAC
@Monala: my sister has become a great source of venting. Plus she is a bossy thing that comes in, gets my parents crap cleared out, and gives me a needed break. She is also my big supporter (besides my darling husband). We each have our strengths and have figured out a balance for now.
GeneVA
I have been a full time caregiver for my wife for the past 4 years. She has MS (diagnosed in 1974). She can not now walk or keep her balance but from time to time convinces herself that she can walk and if I am not present, I pick her up from the floor. She is a small person, maybe 85 lbs, so it’s not difficult but getting harder for me since we both are in our 70’s. She also has COPD and is on oxygen and has recurring bouts with kidney stones. The physical part of caregiving isn’t particularly difficult but I’m still working on patience, attentiveness, compassion, empathy, etc. We enjoy each others company, so the daily routine (bathing, dressing, meals etc) has opened a new dimension in our relationship. The one area that I have struggled with is finding the resources/advice for late stage MS patients as well as caregivers. Most resources are for the recently diagnosed. About 10 years ago when I was remodeling the kitchen to make it handicapped accessible there was some ADA material but it was industrial in nature. i didn’t want this ugly hardware in our home. Even getting a bathroom vanity that was open beneath for a wheelchair is not available in the big boxes (I had one custom made). It’s often the little things that let my wife feel as though she is still contributing and this promotes her well being. The most important thing I’ve learned is to never let your loved one feel unloved. Take the time to make them feel special every day.
Yarrow
@workworkwork: It takes such a great deal of effort to communicate with your wife that way. Your love for her shines through what you wrote about her and she must also know how much you love her. Wishing you the best going forward.
Yarrow
@LAC: It is possible that instead of asking about her wishes you frame it as you need to know for your peace of mind? Make it about you and your needs instead of her needs? I realize that sounds all backwards but if she feels she’s helping you it might be easier for her to do it. Perhaps that might feel a bit too manipulative? Or, if she just can’t decide, then come to terms with that fact. If that’s where she is, then that’s where she is. Hard to do, I know. Wishing you the best.
LAC
@Yarrow: yarrow, thank you for the suggestions! I will try it that way. It cannot hurt.
It is hard when you have a parent who is extremely emotionally limited as a caretaker and yet have the other parent so pliant that if he says the medication is not working, she will not take it regularly (mind you, not a doctor). I just want to protect her.
Yarrow
@LAC: Yes, it’s so hard dealing with our parents as they age. And we’re still their kids even if we’re adults and have been for quite a long time. Your instincts to protect her are right and admirable. It must be so hard to deal with two parents in situations such as yours. Sometimes you just have to do what you think is the right thing and go from there.
EriktheRed
@Ohio Mom: Yes, he does get SSi, as a matter of fact. I always forget that when talking about our situation. Obviously, that’s a help to our household, too, but not as much as the state aid we get.
Nevertheless, at least it does cover things like Depends™ and food to feed his young man’s appetite.
Ohio Mom
@EriktheRed: Good to hear. I only went on like that because I am always running into parents locally who have no idea what government programs their kids are eligible for.
The schools don’t tell them, their pediatricians have no clue, and our so-called advocacy organizations are on another planet. About a year ago I went up to the Cincinnati Autism Society’s booth at a disabilities conference and asked the staff person if she had any tips about the SSI process. She told me she’d like some herself because she’d be doing that in a few years for her own son.
I’ve read a little about Rauner and what a disaster he is. Can’t figure out why what is happening in Illinois does not get the attention that is given to the going-ons in states like Wisconsin and Kansas.