Thinking about dementia

[lillibet]

There's a post that's been making the rounds of social media, called 16 Things I Would Want, If I Get Dementia. It's a well-intended list, written by someone who works with dementia patients. Yet I find it sticking with me, not in sympathy, but in anger. To me, living with the reality of my mother's health, this reads like an impossible and selfish fantasy, designed to make family members feel guilty for not fulfilling the simple desires many of us might share for our declining years.

I won't respond to each of the sixteen items on the list, but here are a few thoughts:

1. If I get dementia, I want my friends and family to embrace my reality. If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it.
Because it isn't painful at all for a family member to hear you fret as to why her children don't visit, when they're right there, unrecognizable as the kids they once were; or to grieve again and again the loss of another parent that the survivor's mind cannot grasp. Because it isn't hard to witness the detachment from reality of someone who once defined your own understanding of what was real.

2. If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.
The adult who cannot feed or bathe herself, who needs your help to go to the bathroom, who frequently has accidents requiring intimate intervention humiliating for both of you. Who can't tell a story or follow the answer to the question she's asked twelve times in the past hour. Who demands things that are unachievable and pouts when her demands are denied. Who makes up stories and then demands validation and action based on these untruths. Treating you like an adult would be cruel.

3. If I get dementia, I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, read, and visit with friends.
Friends who've let you drift, with whom I never had a connection, who are mostly dead. Those friends? To exercise, when convincing you to walk down the hallway is a battle of wills and an exercise in pain? To read, when the words don't make sense on the page and you can't follow the thread well enough to listen to a single paragraph?

4. If I get dementia, ask me to tell you a story from my past.
You mean the one you told me last week, the same one that every memory seems to lead to now, about your difficult childhood, that no unremembered telling can lance, that left me in tears the first twelve times and now only makes me numb for its repetition, grieving that in your fear this is where your memory invariably takes you.

8. If I get dementia, don’t talk about me as if I’m not in the room.
Because letting you zone out while I talk to the doctor, contradicting most of what you say, is not better than having you argue with me about whether you've been using a walker for three weeks or three years, or whether your most acute symptoms emerged last week and not six months ago? Because you don't know why you're in the hospital and you're not sure where you are, anyway?

9. If I get dementia, don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose a great new place for me to live.
This is the one I can endorse whole-heartedly, except that there is nowhere that can be completely trusted, where your person and your belongings are truly safe, where the failure of our society to remember the elderly in its plans is not painfully evident.

10. If I get dementia, and I live in a dementia care community, please visit me often.
Because I need for you to be brought to tears regularly by the wreck of my body and my personhood. That you cry on the drive home is not important as long as it's at least once a week.

14. If I get dementia, don't exclude me from parties and family gatherings.
Because making a difficult and often painful journey to be part of a gathering with people you no longer recognize, whose conversation confuses you, where you require constant care and attention, which you won't remember in a few days, is worth it for the sense of family.

16. If I get dementia, remember that I am still the person you know and love.
Except you're not. Because the person that you knew would have been horrified by who you are now.

It's not always this bad--this is drawn from personal experiences with my mother, my grandmothers, parishioners we visited when I was a child, stories others have shared with me (often in tears). And the reactions are personal--what makes me crazy may not faze my sisters, and vice versa. But here's my list:

If I Get Dementia:
- make sure my DNR is up to date and includes no antibiotics for pneumonia nor any other intervention that might prolong my life, if you are not allowed to assist my suicide
- get me the good drugs, the ones that leave me pain free and zoned out
- warehouse me somewhere convenient, that you can drop by for 10 minutes on your way somewhere else, so the staff have some incentive to pay attention to me and not steal my stuff
- don't hold it against me--I won't be the person you knew and loved
- don't feel guilty--aging is a crapshoot and all too often a shitshow and I will know that you are doing all you can, whatever that is
- live well, with my very best wishes

Comments

[dpolicar]

(nods) Yeah.

I wasn't quite as hard-hit by that post, because I'm not living with it, but my reaction was similar to -- if not nearly as articulate as -- yours.

I'm sorry.

[lillibet.livejournal.com]

Thanks. It's nice to know I'm not the only one that rubbed the wrong way--many people were sharing it and it was hard not to scream at well-meaning people who don't know what they're talking about.

[anotherjen.livejournal.com]

Stunned. Thank you for writing this. I'm so sorry.

[lillibet.livejournal.com]

Thank you. Most days are not as awful as this might suggest, but some are :/

[desireearmfeldt]

*leaves a pebble*

[lillibet.livejournal.com]

Thank you.

[outerjenise.livejournal.com]

First: I am so, so sorry that you are going through this. It's horrible and horrifying to watch someone you love die just a little bit every day. I hope you and your family have support as you care for your mother.

Second: I wholeheartedly agree with your assessments. I am lucky that my parents had me young. However, their parents also had them young, and I got to watch two of them slowly deteriorate and finally die within two weeks of each other. It was terrible, and I still feel horribly guilty for living so far away that I wasn't able to help my mother care for them.

My grandmother declined slowly and gracefully over a period of ten years, slowly losing bits of herself. Thankfully, she always knew me and recognized me, and she was always lucid when I visited her. She connected with Thing1 in a marvelous visit just three weeks before she died, and Thing1 is still troubled by her death. But Grandma got lost in her own thoughts, told the same stories over and over, and they were all the stories that tormented her, so they were awful. She stopped being able to distinguish dream from reality and would call my mother in a panic because she'd dreamed that she'd fallen into an arroyo and lost her purse. My mother visited her at least every other day, despite the fact that my grandmother had been a mean-spirited, bigoted jerk to her for most of her life, and at then end, they developed a deep and satisfying friendship, which gave my mother excellent closure.

My grandfather's decline was swift, and it was far, far worse.

He developed a problem in one of his cardiac arteries that might have been resolved with a stent, but he refused the treatment. So every morning, when he woke up, he had a heart attack. Every morning. And you would think this would kill him, but despite being 90 years old, he was strong as a horse, and he survived this, over and over again. He had his first heart attack in April seven years ago and finally died of a stroke the following August.

I went in late July, fully expecting him to die any day, and he just didn't. He'd start to have an attack, we'd give him nitroglycerin, and then one of us would hold him upright so that he could breathe, wait 15 minutes, and give him another one. I will never forget the sensation of holding my grandfather in my arms through one of these attacks, feeling him struggle to breathe, telling him that it would be all right, not to be afraid, that I was there, wondering if he was going to die that moment, in my arms.

But after the second nitroglycerin, he'd be mostly fine. But not all fine. Each attack killed a small part of his brain. He began to recount stories from his past. For the first time, he told me the horrors he'd seen in WWII, and he wept like a child. And then he forgot them. We lost him in tiny increments over months.

I miss him every day. But I do not miss those last few months, because that was not him. Everything that made him the most wonderful, special person in my life had already died.

So I agree: the article you read was a self-indulgent fantasy. Dementia is hard on the patient, but it is far, far harder on the family. Please, do what you can to keep yourself healthy and sane, and don't be afraid to ask for help. We're here for you.

[lillibet.livejournal.com]

Wow. What a profound experience, holding your grandfather like that. Thank you for sharing all of this.

I think I was moved to write about it because I know that many of us *do* know what it's like and it's not the happy garden of demented delight that the article might suggest and no one should feel that they are failing when they can't provide that.

[outerjenise.livejournal.com]

I cannot imagine you failing at this in any way. If you feel like you are, remember, it's the situation that sucks, not you.

[muffyjo]

Adding thorough agreement here and nodding furiously.

[melted-snowball.livejournal.com]

Oh, dear. I'm so sorry.

I don't even know what my "If I get dementia" list is.

I find myself responding to this list the same way I respond to, "if you aren't parenting like this, you're ruining your child's life" lists, which is largely to hold up my middle finger, combined with wondering about the extent to which the list upholds patriarchy.

*hug* I'm really sorry. I know your mom has been really important to you.

[lillibet.livejournal.com]

Thank you. I mostly just tried to say "this post is not for me" and move on, but as you can see, there were all these thoughts :)

[kjc.livejournal.com]

Whoa.

Acknowledged.

[lillibet.livejournal.com]

Thanks. It's a helluva thing.

[gingicat]

I spent a couple of summers working as a "leisure time" aide in a nursing home when I was a teen. Most of my afternoon was spent sitting with Rose, who latched onto me as a person who didn't change and wasn't part of her previous life. And she did revisit her previous life over and over again. One Sunday afternoon I overlapped with her son, and he looked, well, as you describe yourself feeling here.

I did talk to my parents about my job and the people I met. And later, when Grandpa developed full-on dementia, Dad said to me, "I would rather die than go to through this."

[lillibet.livejournal.com]

I think it's very different when it's someone you knew when they were a different person--and really valuable to have that in their lives. Many of the staff at my mom's facility seem to really enjoy her company. I think the person who wrote this is writing from the perspective of a professional carer and, sounds like, an excellent one. But it just ignores how deeply painful it can be for the family.

[gingicat]

Yes, that's what I was trying to say. I'm sorry it didn't come through.

And I'm really sorry that you're going through all of this.

[coraline]

thank you for writing this. because something struck me as "off" about that article, but not having the first-experiences you are having i couldn't put my finger on what.
lots to think about, no easy answers :(

[lillibet.livejournal.com]

Thanks. I really did take the original article as well-intentioned, but oddly clueless.

[quietann.livejournal.com]

This is what I thought. I saw that, and even though I have little experience with dementia. It just seemed off, and now you've made the connection for me -- that the piece doesn't consider at all what it is like for the people interacting with the person who has dementia, especially family.

(My dad lived on the other coast, and never really developed dementia as much as he just withdrew and disappeared into himself. I certainly had my share of jumbled conversations with him, but eventually he lost the ability to talk on the phone, and then to talk at all. Which was terribly painful, but nothing like you're going through. None of my elderly relatives got dementia.)

[lillibet.livejournal.com]

Yes, exactly. I mean, it's a nice vision of what we'd all like to be true about our aging process, but it rarely is and ignoring the cost to others just doesn't seem right.

[persis.livejournal.com]

*hugs* I know exactly what you mean. I cannot bring myself to read the article, as I think I would get too angry. But I so do appreciate your synopsis. Thank you for doing the dirty work. I have lived thru this with my mum's Alzheimer's, and my Dad has pretty bad dementia now, similar to his mother's when she was older. I will have more to say, when I am not using my phone as the interface, but suffice to say, I agree wholeheartedly with your list of what to do if I have dementia requests.

[lillibet.livejournal.com]

Thanks. I know you know :)

[kellyjmf.livejournal.com]

Thanks for reading that and adding your response so I got both at once. I probably would have lost it if I just got her side.

My grandmother had Alzheimer's and lived with us for the last three years of her life. She died when I was 16 and I still feel guilty and helpless and frustrated about it. I won't recount the stories because you already get it.

My dad has always said to just chuck him in the home when the time comes and I know both my parents have medical directives that include DNR. And they asked me to be the one to pull the plug because they trust me to fulfill their wishes, even if it's hard.

This stuff sucks, and I'm sorry you're in the thick of it. Thanks for guiding the way.

[lillibet.livejournal.com]

Thanks for understanding. I just... I mean... Yeah. Thanks.

[greenlily.livejournal.com]

*hugs you*

Yeah. We went through this with both of my grandmothers, may they rest in peace. It is so, so hard. My mom's in the field herself (clinical social worker specializing in elder care) and nothing she learned as a professional helped all that much when it was her own family. How to advocate for my grandmothers, yes, how to get things done, but other than that, no.

I don't doubt the author's good intentions. But the tone-deafness of this list is pretty staggering.

[lillibet.livejournal.com]

Yeah. I can see this being useful for professional caregivers and I'm not saying these aren't worthy goals, but it just utterly fails to consider the reality of the situation and the effect on the family.

[kalibex.livejournal.com]

:/

[lillibet.livejournal.com]

:)

[greenquotebook.livejournal.com]

(((HUGS)))

We were lucky - not the right word, but I can't think of another - that shortly after my father in law was diagnosed with the beginning stages of Alzheimer's, the multiple myeloma ended his life, preserving all of our positive memories of him rather than replacing them with sadness and scenes that are hard to bear.

[lillibet.livejournal.com]

Yeah--gratitude can be tricky terrain in these situations. I frequently remind myself that we are lucky to have had Mom (and Dad before her) with us in good enough health for long enough to reach this phase.

I remember when my dad died, realizing that now he was freed from time and I could grieve for the dad he was when I was 2, or 16, or 8, which somehow felt disloyal when we were stuck with who he had become by the time I was 42. It's harder with Mom, in part because she was the primary caregiver for Dad and insulated us from a lot of the messiness of his decline, in part because her decline was more sudden, and in part because my relationship with her has been very different. But just about none of it is easy.

[galestorm.livejournal.com]

*hug*

...that's about all I can think to say on this topic. I must've been one of the few who didn't see this story rampage through social(-disease) media, but if I had seen it, I'd likely be in a similar spot.

[lillibet.livejournal.com]

Thanks. Sorry to bring it to your attention--I felt like it was everywhere for a couple of days, but that's probably because I'm soaking in it right now.

[galestorm.livejournal.com]

Oh, no worries on bringing it to my or whoever else's attention.

'Soaking in it' reminds me of the old commercial for Calgon, and I have no idea as to why I'd even know that! :-O :-D

[lillibet.livejournal.com]

I was thinking Palmolive ;)

[galestorm.livejournal.com]

Oh! Ah, okay, that was it! Thanks! :-)

Calgon can take me away, once I've done with the Palmolive! :-D

[muffyjo]

Today is a thought-filled day for me. And in reading this I find I am oddly split. Let me explain.

I want each and every health-care provider to give me or my loved one the kind of respect and thoughtfulness that the writer of that article implies because I do not trust an industry of strangers I pay to have my best interests at heart and if they believe what that person wrote, I think that will work out well for the new me.

I want each and every loved one to understand and believe that whatever decisions they make, I want them to practice kindness and make sure I am comfortable, please, but after that, I'm not the me you loved, I'm a new me and while this me probably loves you and trusts you implicitly, you do not have to put up with this crap if you do not want to. Make sure I am safe and cared for and go be happy. I will be fine. This is going to suck so much and eventually my lymphatic system will let go but the time in-between...that's too hard. If we ever pass the right to die, I'm there, folks. I am SO there.

Too hard to explain the details today, but you know most of them, you were there along some of the path and you've heard me tell some of the stories of my grandmother.

So I agree with you. And, in a way, I am glad that person doesn't. But I absolutely agree, dementia isn't what they think. I don't care how many cases of it they have seen, they haven't felt it the same way. I expect Rachael Wonderlin to largely be like me trying to tell a pregnant woman in labor she will be fine and the pain will go away. I'm not wrong, exactly, but man oh man can I respect that I know NOTHING about what I'm saying.

[lillibet.livejournal.com]

Yes, that's how it struck me. Very well-intentioned and quite possibly helpful to caregivers, but dangerously naive about the toll on family members.