On
Amtrak from Napa to Kansas City
When I imagine the end-stages of this disease, the
fear of being a burden on my wife Marja or my children rears its head frequently. I don’t want my family to suffer from the responsibility
to care for this decrepit old man, distorting their lives, creating resentment,
and dominating their memories of me. I
don’t want it … and it seems almost unavoidable.
But what’s so wrong with being a burden?
Certainly much of my distaste derives from the
hyper-individualism of our culture: Being dependent on another person just
feels shameful to me, somehow morally irresponsible. In other cultures—even in westernized Finland
where Marja grew up—taking on the care of family and community members is much
more an expected part of life … not an exceptional burden.** Here, it feels to me, it’s disgraceful.
Part of my fear is just my personal revulsion at being
fed, being dressed by others, wearing diapers and having to be changed and
cleaned like a baby.
Most important are my love and compassion for Marja. I want her to be happy and to live a full life,
undistorted by the overwhelming demands of caring for me. I’ve not been very emotional about this
disease, but thinking about the pain Marja will experience brings me close to
tears. I’ve seen the isolation that
caregivers can experience and I don’t want to saddle her with that. I don’t want resentment to be the last
feelings she has for me.
If Marja were
to die, I would be terrified of the impact that being
a would have on my relationship with my children.
But I wonder if my pride in my independence is
blinding me to deeper realities. Will
Marja, in fact, experience caring for me as a burden? She’s a natural caregiver and derives great
joy from sharing in the pain of others (far beyond that point where it would
induce resentment in me). Isn’t it
possible she will find caring for me meaningful and fulfilling? Isn’t it possible that, after fifty years of
our relationship, she will find caring for me just part of our loving
relationship?
Lee Ann Gerleman and others have left stories in comments to this blog
in which the late stages of Alzheimer’s actually bring more joy and closeness
than was possible earlier in life. There
are gifts in this disease. Might not
newfound joys and the different dimensions to our relationship mitigate some of
the burden?
I won’t gloss over the pain, however. I still believe the caregiver gets the brunt
of the pain in this disease. At some
point even Marja’s capacity will wear down.
We must continue to talk with each other about such feelings and allow
new decisions as necessary. What is her
sense of burden? Is she fearing it as
much as I am? I don’t want to project my
fears upon her, but I also want her to recognize her own needs. There are other ways of caring for me. We need to recognize together that I will
eventually need the Alzheimer’s unit of a nursing home. Fortunately, my daughter Laurel has promised that
she (Laurel) will put up a fight if Marja tries to keep me at home beyond
common sense. These are important
discussions.
We must plan for the future, but we must also
recognize that the fear of being a burden is, like other fears, a
fear of the future. To the extent that I
live in the present, this fear isn’t real.
The future is unknown and unpredictable.
Living in the present is an antidote to fear.
My fear of being a burden is very real, but perhaps it
doesn’t need to be so heavy.
** I’d be very interested in hearing from those readers
who are from different cultures: To what extent do the elderly or ill fear being
a burden?
Naturally in a span of ten or fifteen years, as one declined, its a heavy burden on the caregivers. But there are wonderful places out there. There are no more county poor farms. If your family were to be over extended and stressed, there are nice homes where they can visit and become again, family members, wife and lover, children, instead of caregivers. I think one of the reasons for the "burden" is the never ending questioning, not understanding the answers and it goes on and on, like a 2 year old. Never getting a break, it goes on and on forever. All of it sad and stressful. In my years in long term care and hospice, I have seen women bring in their husbands, and feel terribly guilty because they are leaving their "burden" at our doorstep and as a good wife, they should take care of him until they can't lift their finger anymore. Its their job. In long term care, in a decent unit, the wife soon learns that to come and visit every day becomes enjoyable and lower in stress. Only once have I had a wife say to me, "I should be doing that. its my job, not yours." And she was having a really hard time with his staying there. Most of the families enjoy coming for activities, sons and grandchildren come for Mother's Day and Father's Day. They make a big deal out of birthdays, etc. Just sitting out on the porch in the shade, watching cars go by is better than struggling along at home. And there have been many sons that just cannot do patient care on their Mother or father. Thats where long term care facilities come in. It allows family members to be beloved wives and children again. They don't have to be a nurse or an aide. they can enjoy sitting and chatting, instead of taking them to the bathroom. Leave that to people who do that for a living.
ReplyDeleteObviously not all long term care units are totally wonderful. but if you become a resident, your wife's visit every day ensures that you get the care you would need. And the squeaky wheel DOES get the grease.
I always tell my daughter, "If I get as bad as Grandpa was (OCD and a brain tumor caused his dementia, which lasted 3 months), take me for a long ride in the car, and we end up at the new facility. Show me the room with a computer and internet access, and a TV with cable. I promise I will stay there." lol
People that work in residential facilities, that's what they do. They may not like the BMs, the dirty fingernails, the constant cues to people that are forgetful, but they could make as much money at McDonald's, so they usually work long term care because they like the closeness with people.
Some of the people that comment on these alzheimer's blogs have such heart wrenching sadness and defeat. Some of that , or MOST of that is because they are caregiving and never get a break, never leave the house alone, never have any fun. that can be taken care of by respite care, day care, etc. Get out and do something fun, and it isn't such a stressful burden to stay home with your partner all the time.
I hate to think of someone with dementia as a burden. Of course, I only had to be there 12 hours a day, then I went home and rested. That's why there is such a need for adult day care, respite care, nursing facilities.
This issue of nursing homes or Alzheimer's Care Units is still one that I don't know enough about. So many of the stories one hears are of terrible places: even if the staff is doing their best, the places don't sound like environments anyone would choose to live in. But aside from the rural nursing home at which I was one of the three physicians over 30 years ago, I've not visited or asked around. The stories you tell, Lee Ann, are so hopeful. I need myself to get out and visit some. I'd also be interested in hearing stories from others.
DeleteMy dad has dementia---a different variety than yours. He lives at home with my mom. He is unable to walk or care for himself. It is hard for her, and for us (who help them). But he still loves. He is still watching birds, squirrels and bunnies outside. He is glad to see us.
ReplyDeleteWe know that in some ways he suffers, but there is a sweetness to this time as well. We will care for him as long as we can.
There is a sweetness to this time as well ...
DeleteIndeed.
kg, that is so nice. You are focused on the positives instead of seeing all the negatives. He loves you, happy to see you, and enjoys certain things. Good for you. That's the way one should approach caring for their loved one. If the stress and difficulty becomes too much, there is respite care for a few days at a time, so your Mom could go to a family reunion or on a short vacation. That way it would be a bit more gradual than suddenly unable to care for him at home, and him going to an unfamiliar place. I think respite care is covered by medicare too. Because respite care is the saving grace for so many caregivers. I enjoyed reading your post. I can see the love you have for your Dad.
ReplyDeleteamen, kg and lee an!!to that i add to anyone feeling themselves a burden. in the case above there is obviously a center of love and compassion. learn to accept their love, sir. when it is given from that center there is no accounting to be had, no balance sheet. be present with those who are helping. try to see it through their eyes. nothing would feel better than for you to take their hand, give a little squeeze and smile.
ReplyDeleteThere are great joys at times though. My grandfather had a stroke and so was blind and not aware of today, probably similar to an Alzheimers patient. His father had immigrated here around 1900 from Germany and he had visited Holland and Germany as my great-grandfather became a successful commercial florist so they bought tulips and other special flowers from Europe to sell in America. And they often visited Germany. So he knew German, but we never heard him speak it.
ReplyDeleteBut one Christmas, near the day, my sister started playing Silent Night on the piano. Suddenly and without warning, he started singing, my sister described it as in perfect German, the words to Silent Night. Imagine her amazement. I didn't see it or hear it, but I still marvel at the story.
Sadly, he lost all his German relatives when the iron curtain fell and the wall went up. I admit i am very rattled by this NSA spying knowing how that loss hurt my grandfather. He would never speak of them again as it was too painful. And when the President visited GErmany yesterday, many, many German leaders in their version of Congress said the NSA spying we are doing here and there was worse than what the Stasi did. Much more invasive. As well as Daniel Ellsburg. I can't help but from being very angry at my government for letting this happen. I don't believe the people who have been testifying to Congress. Too many of their lies have already been debunked. This is a money issue largely, but one tweak and we are in a police state.
oops, you were trying to share some joyful thoughts about your grandfather... and then you went on a political rant! Try to focus more of being helpful to David and we who are reading along.
DeleteThere are some great places to live with Alzheimer's in Oregon. For 8 years I was the Administrator at Country Side Living in Canby, Oregon and I was the Director of an Adult Day Center, Thelma's Place, for 3 years. They are wonderful places where people are treated with dignity and respect. I would be proud to have my mom or dad move there. People are treated as if they were family members. You should just go into some places and look around. Sit and have coffee in the dining room and watch the interaction of the staff with residents. You can tell in a few minutes if it feels like the kind of place where they really care about the people they take care...where it feels like they are taking care of their own family members. So don't be discouraged Dr. Hilfiker...there are some great places out there where you will be treated with the respect you deserve and your family will enjoy coming to visit!
ReplyDeleteThanks for writing with a good word. I do need to know about some of the Alzheimer’s units and hope to visit soon.
ReplyDeleteDavid
My 72 yr old husband has a diagnosis of Dementia Not Otherwise Specified--but I think it is probably vascular, since he has had several episodes of blacking out and being delirious upon recovery--and having worse cognition afterwards. He takes donepizil and Namenda, plus some drugs to lower BP. We moved into an independent living community near our children (we each have two, none in common). I selfishly chose this option because I want to continue with the world travel plans we had started, and after the last time I left him alone I knew I couldn't do it again--he was hallucinating, seeing people in the house trying to steal his money! Also he lost his keys and had to call on a neighbor to let him in. He can't drive anymore, he recognizes that, but the state of TN gave him a license when we moved back here last year. He also had a driving instructor from the VA certify him as okay to drive--but didn't tell him that he had blacked out and had had a minor fender bender about two years ago. I certainly won't get in a car with him!
ReplyDeleteI feel so guilty reading the stories of love and compassion from caretakers. My husband isn't really too bad off most of the time--executive function is shot, so he doesn't do much but watch TV (once I have located the program he wants to watch) or read the newspaper, which takes all day. His memory actually isn't all that bad, except for names and faces. Yet I find myself constantly depressed and only happy when I can get away for a few weeks. I wasn't cut out for this--in fact we wrote our own marriage vows 32 years ago and there was nothing in them about better or worse or sickness and health! We had a wonderful life together for 28 years; unfortunately we've been married for 32.
Arleeda:
DeleteThe sentence that jumps out at me is: "I feel so guilty reading the stories of love and compassion from caregivers." I have absolutely no experience with the kind of care-giving you have been called to do, but I do have some thoughts as a guy that has been a doctor and who has watched people put themselves in untenable positions out of guilt:
1. I don't think it's fair to compare the care you give or the feelings you have to what other people are writing. These wonderful stories (and they are wonderful) are chosen from years and years of care-giving, much of which is not, I suspect, so wonderful. The events described are chosen because they are beautiful. If people chose to comment here about their times of depression, resentment, exhaustion, and so on, I'm sure I would have a long comment section.
2. Every situation is unique: the degree of support from family and friends other than the primary care-giver; the financial and other resources that can be depended upon; the guilt trip others lay on you for taking time away; the demands of the person with Alzheimer's.
3. You are you with all your gifts AND your limitations. I am enormously grateful that my wife Marja is quite a natural care-giver and has demonstrated her ability to put up with very difficult people and situations. If our situation were reversed, however, I'm sure I could not give her the continuous care she would need without a great deal of resentment. What's important is to recognize your gifts and limitations and make decisions with those recognitions rather than whip yourself for not being someone else.
This disease is tough enough to get through without adding your guilt to it.
I realize I'm lecturing you, which you probably don't need, either. You may not feel you have any options
and there is undoubtedly all sorts of stuff that makes simple solutions impossible. But this disease is clearly hardest on the caregivers. I hope you can find some way to come to peace with your situation.
As a physician - retired now- I have taken care of many AD patients in nursing homes, have generally found that the care was excellent, at least in those that I visited, but what struck me at each visit was the absence of joy. The patients, all in advanced stages, never smiled, never laughed, never showed pleasure; if their faces expressed anything, it was confusion, anxiety and anger. I was diagnosed with "normal pressure hydrocephalus", a treatable form of dementia, and am doing well, but AD could still be in my future, especially since my father had the disease. If an early test for AD was offered, I would take it, just for the chance of participating in a drug trial, or getting treated early on if treatment became available.
ReplyDeleteThe absence of JOY: it doesn't have to be that way. Although "confusion, anxiety and anger" are commonly part of the experience, when principles of "habituation therapy" (brought to my attention by Dr. Paul Raia of the MA/NH Alzheimer's Association) are employed. Check this out: http://www.sahp.vcu.edu/vcoa/newsletter/ageaction/agefall11.pdf
DeleteI was primary caretaker (well supported by 5 siblings) for my mother with Alzheimers, keeping her at home for as long as possible, then supporting her at an assisted living facility geared to dementia needs, and finally at a nursing home.
Until the very last few months, Mom was mostly free of anxiety, often engaged in activity or conversation. Music and singing were a particular delight, as she had a remarkable memory for the old standards even in late dementia. Simple games (keep the balloon from touching the ground) were great exercise, encouraged socialized connections, and generated belly-laughs by all. Caring for potted plants, visits by thoughtful friends and family, 'helping' to prepare a salad or frost a cupcake, making a scrapbook together, lots of activities that brought joy to Mom and to us.
Habilitation therapy principles helped us to live in the present with Mom, in HER present, to emphasize her remaining abilities, to subtly re-direct when her obstacles began to frustrate. We were grateful in particular to the well trained (if not highly paid) staff at The Atrium assisted living facility in Chelmsford, Massachusetts for their competence and loving care.
Mom never required sedatives or anti-anxiety meds, although I can imagine cases where judicious use of prescriptions could be appropriate.
Thanks to you both Hilke and Kathleen for your comments. I have not yet taken the initiative to visit a few local AD care facilities, but like each of you I have heard of places, both wonderful and sad, available for us as we require it. The hope for a course like your mothers, Kathleen, can make things easier for us.
DeleteHilke, I am curious as to how your diagnosis was uncovered ...
DeleteAnd to Kathleen and David. My mom is in a nursing home, without AD, but some degree of vascular dementia( probably). The nursing home is in a small local upstate NY community. I've met quite a few persons there in "moderate" to advanced AD. A friend's mom is beyond recognizing me , tho' I think I seem familiar. She still can laugh and enjoy some things, but can also rapidly shift to a state of sort of unfocused distress. It's complicated as you point out. There are others who I've seen meander farther along that path, who seem to reach a place where they are very nonreactive. This is not a highly financed operation; they do not have all the activities offered in some places, but care is compassionate from what I have seen. It has been a learning experience for me, seeing how the end approaches. One thing that makes some visitors very uncomfortable - most all residents eat in the dining room. That means that people who need assistance are not hidden away, not ostracized. And I have seen that more "together" residents often offer encouragement to others. Not every resident is kind - for some that's a trait that disappears, if ever it was present - but this "normalizes" the setting, making it less institutional. Oh,when I visit, I sit with my mom during meals - i figured If this is HER normal life, I should participate in it it to see how her life feels. Even to share the sad or scary stuff.
When I worked as a family doctor in a very small town on the North Shore of Lake Superior in Minnesota, we had a 46-bed nursing home. I had heard all the stories of the terrible things happening in nursing homes, but this was a gentle, loving place. Like the place you're talking about, they did not know the latest methods or have the finest equipment or have the necessary budget, but they cared for their patients. I always wondered whether some of the loving care came from living in a small town where the nursing home staff was likely to have known the resident, or have had the resident's son for a school teacher, or whatever complex of relationships existed there.
DeleteI doubt it will actually happen, but I always thought I wouldn't mind ending up there.
I agree with your comment, “Living in the present is an antidote to fear.” When the ones we love are affected by aging, a disability, or in some cases a neurodegenerative disease, families can help by proactively preparing for the uncertainty, which lies ahead. Adapt clothing, adapt homes, adapt lifestyles to the best of everyone’s ability, and the future will not feel quite as daunting.
ReplyDeleteRochelle Denning
Founder, www.easyundies.net
Thanks a lot to David--he seems to still have a lot of empathy, which I feel my husband now lacks. I also believe it is a lot different when it is a spouse who has dementia rather than a parent, which he probably realizes. For one thing, the sense of a shared existence with each one contributing according to his/her abilities changes to one person doing 99% of everything. I am 4 years older than my husband, and I thought that if anything, I would be the one who needed caring for. I am grateful he can still bathe and dress himself--but he misses his left jaw when shaving, uses soap instead of the needed dandruff shampoo, wears the same clothes repeatedly, never puts his dirty underwear in the hamper, etc. His visual-spacial perception is odd too--doesn't see anything unless he is looking for it, has difficulty holding onto a sandwich without losing the filling, makes a real mess of eating, walks at about half the speed I do, can't manage money or appointments. We used to be good duplicate bridge partners, but now he can't even arrange his cards. He still remembers things well, but he just isn't the same person. Since we have separate children from our previous marriages, they aren't as much help as they might otherwise be, although I am very grateful for his younger sister--who was also the one who cared for their mother until she died (she didn't have dementia, but congestive heart failure). His sister looks after him when I take my much needed vacations--alone. She seems to be better at caretaking than I am, and she has her own husband who has had kidney cancer. I know things could be a lot worse, we do have adequate financial resources, including long term care if and when it becomes necessary. But I miss the man I married!
ReplyDelete(Arleeda's post is part of a thread she began on 6/24 above.)
DeleteHers are some of the very hard realities for caregivers of this disease.
David
ReplyDeleteIt has been so interesting to read about how you feel as someone with Alzheimer's. My mom has this disease and it is a journey that our family did not plan on taking. We come from the farm and my mom is the most incredible woman. I have three sisters and a brother and an amazing father, and each of us has had to make a choice to drown in the sorrow of what is to come or to rejoice in every moment we have with her. All but one sister has made the choice to live life to the fullest with her.
Does she feel like a burden? I don't know. But I do know that altho she can do nothing for herself anymore.....there are many "diamond" days. The diamond days now are when she reaches for my hand when we walk....when she manages to put a sock on her foot....when we are going for a car ride and she can still sing the words to an old hymn.... when she gets grumpy and tells us off, she still can express her feelings and feel safe with us.
My dad carries the biggest load both mentally and emotionally. We have shed many sad tears of what was and we continue to share happy tears as we choose to celebrate who she is now.
There are still days when in the quiet drive away from their house I cry out to God "Why my mom?" and I will never know that answer this side of heaven.
But my faith has given strength when I am weak, courage when I am afraid, peace when there is turmoil and grace to carry on when I want to quit.
This is what I will pray for you and your wonderful Marja and family. Blessings to you David. You have inspired me with your honesty and courage. Thank you! Candice
Hi David,
ReplyDeleteI have a quick question for you regarding your blog, but I couldn't find your contact information. Do you think you could send me an email whenever you get a chance?
Thanks,
Cameron
cameronvsj(at)gmail(dot)com
Best way to get hold of me is to go to my website, www.davidhilfiker.com and click on the "Contact Me" button in the left lower part of the menu, and write me a note. I'm a little reluctant to put me email address up publicly
Delete