**My dad is a 74ish… maybe he’s a 75-year-old, with dementia diagnosed about six years ago. His symptoms align somewhat with Lewy Body and his scans show vascular problems. From time to time, I keep track of how his symptoms are progressing. In the beginning, I thought doing so would teach me some secret I needed to know about my dad before he died, some beauty about life cycle. So far, it’s taught me that if I end up inheriting his diagnosis, I need to figure out a way to kill myself, and I need to remember to do it before I get too fuddled to know how. So, I dunno. Maybe this is only the midway of my lesson. Things could still look up, right?**
We visited my parents last weekend, and it was surprisingly peaceful. My father is decidedly more impaired. Most of the time, he floated through the house like an errant balloon – circling my mother, scanning each room like a man who’s misplaced a book, then wandering off to the back bedroom, presumably to sleep. Previously when we show up, he’s wanted to talk, needing attention like toddlers do, unable to settle down until he saw you focused on only him. This visit he only engaged in conversation once.
I tried to speak with him a few other times, but it’s surprisingly difficult to start a conversation with him. Questions like, “How are you doing?” confuse him, and concrete prompts such as, “Did you bike today?” are few and far between. Even these seem to throw him into disarray, as if the concept of ‘today’ must be dug out of a wrecked filing system.
One time I smiled with prolonged eye contact, an invitation for him to talk. He eyeballed me. “What?” he demanded after a moment. Which? Good point, I guess.
Contents of the one conversation: He used to be a good doctor, but he’d had a ‘strake’ (stroke), and his brain, no good. But! (Handing us a workbook on singing lessons) he had a good voice. His mother had put him in (some singing type function as described by hand gestures and broken sentences.) He could be useful by singing.
There have been several iterations of this idea as my father has lost function, so that over the years I’ve understood the core of his personality is a desire to be useful. Watching him hardscrabble to hold on to anything has broken my heart. The worst: he was so proud of having 0 – blood (Universal donor! Saving lives! Going into the hospital again!) but eventually could no longer give blood because he was not able to answer the questions giving informed consent. The nurse cried when she told him.
But for some reason, this time my father’s struggles were not so bad. Perhaps all the earlier versions, I could feel him holding on by his fingernails, the weight of dementia ripping him from the nailbed, his determination to keep holding on. This last visit felt as if he were in free fall. I don’t know if that makes sense. He will always want to be useful. He is so far gone that he can’t hold onto that painful failing for more than a passing moment.
Also on the plus side, he is nonviolent, and although he seems out of it, does not appear to be distressed. Mom says his hallucinations have gotten so frequent and weird (e.g., there’s a man in bed with them at night) that he is more likely to trust Mom’s statement it’s a hallucination, thus limiting their middle-of-the-night searches to prove/disprove hallucinations (this was common when he heard babies crying or an alarm going off.)
My mother is hiring someone to stay with him for 4-hour stints during the day so she can go out and do things. In bittersweet good news, I think she has cared for him until some part of her is satisfied she did her best. I don’t get the whiffs of agony from her that have been present before, but a stronger sense of her boundaries, that she’s going to save some tiny part back for herself.
In distressing news, my funny, sweet, sister Middle (the only one of my siblings who lives in the same town with my parents) has gained quite a bit of weight, and is expressively angry even in casual conversations. There are too many factors at play – stressful job, small kids (one with medical issues), life — for me to say her witnessing the decline of our parents is hurting her health, but I am worried this might be true.
My mother still manages to make dinner for Middle’s family on weeknights, and so they see a lot of each other. This is different than my experience with my mother, who told me I was an orphan shortly after my Dad’s diagnosis came through. I’ve spent a lot of time thinking about why Mom chose to cut me out and keep my sisters closer. On the surface it might seem like she loved me less, but I think some part of it was her trying to save me. Or maybe that’s my mental gymnastics.
But after seeing Middle this visit, I’m reconsidering if I owe something to Middle for staying close to our parents so I didn’t have to. Or if it’s fair of me to pull Middle aside and tell her she doesn’t have to stay. Mostly, I feel like it’s not my place to interfere. I don’t know what Middle needs to get through this. But it’s unexpected to worry she’s being poisoned by approximation to Ground Zero.
UNRELATED
I’ve recently found The New Yorker’s fiction podcast, as read by the author, and I have a bit of a crush on Curtis Sittenfeld right now, particularly with her reading style, which seems to convey how she’s in the middle of telling you a subtle joke. Here’s a link to one of her reads, “Gender Studies” which is NSFW. Enjoy!
Thank you so much for this update. I often wonder how your parents are faring in the face of this difficult disease – grateful to know that your mom has found some help and respite time for herself and is doing what she can to be productive and helpful. Middle’s situation is breaking my heart = she too is doing the best she can and food is often the comfort of last resort. While her weight gain is surely distressing on all counts, she is coping in the only way she knows how – nothing you say or do will change any of that. Sending small love notes in the mail is one way of expressing your appreciation – little reminders of care and comfort can brighten a day among all the endless days of distress and exhaustion. (Sending a hug to you)
Here’s a P.S. for you:
1) Wildlife cams are awesome! Your mom and/or dad might enjoy watching bears fishing in the river in Alaska, Channel Islands underwater life – so many options.
2) Have you tried sending video clips of your kids saying hello or weekly life updates etc – from my parents perspective, the grandkids are EVERYTHING!
3) Massage gift certs for your mom now that she is booking some freedom time for her sanity.
Just some thoughts … such a tough situation and time with no good upsides 🙁
http://nmfconnect.marfan.org/
Does your mom know about this support group?
I alternated between sighs of relief and short stabbing pain as I read this. I don’t know if there is an appropriate way to express the relief for letting go … your description of your dad hanging on by his fingernails hit home in too many ways. And I am not sure what to say to your concern for your sister … it is an impossible situation, in my mind. Having just extricated myself from my parents, and left my young niece in my place, I feel the pain on all sides. I gave until I couldn’t anymore and until I thought their continued lives would slowly (or quickly) drain me of my life. My niece is better at boundaries and my parents are easier on her … and still I can’t really bring myself to call just yet to see how they are all faring. TMI … all that to say, boundaries are important for all of you, and sharing this burden is not really feasible… wishing you all as much peace as is possible.
Oh … and, yes, New Yorker Fiction, both where authors read their own work, and the one where they choose others’ works to read, keep me sane.
((((Susan)))) Thank you for the suggestions about sending little
perk-me-ups — I forget that those things mean a lot, even though on the
surface they are just a smile or a quick thought. I don’t know if my mom
has seen that website. I will keep it on hand in case the topic comes up.
She does have some kind of online support, but is somewhat private about
details.
((((Anna)))) Thank you for the support. Thinking good thoughts for you,
your niece, your parents.
I see that this post has been up for some time…. been vacationing with the in-laws always makes me lose a section of time and reality! Since I never know what to say about your parents past “hugs and loves to you,” and “I’m sorry, Anne,” I will address your sister.
In some ways I am Middle. My body’s answer to every life changing event or stress is to pack on poundage. Divorce? Well, sure! 30 lbs just for funsies. Four kids? Month in the hospital for the third daughter? Homeschooling? Couple surgeries for random whatevers? I can feel my older sister watching me in horror. I know she is convinced that having four kids late in life is destroying my body and my soul. In some ways she may be right, I give maybe too much… but her fears actually make me feel even more hopeless.
In my family we tend to equate thinness with being okay. You could be the happiest, most well adjusted person in the world and if you are fat my family is gonna assume that you are secretly miserable and losing your shit. Which is an interesting correlation, cuz most of my family is fat.. raging from overweight to obese. Genetics anyone?
*I* tend to equate thinness with being okay. Even knowing what I know, I still look at myself and think unkind things. I agree that small gestures that communicate “you are doing great” would go a long way for Middle. A person who is “doing great” is in a better position to change the “not so great” parts of her life.
Huh… re-rad my comment. In most ways I am NOT Middle. As in, I don’t actually know what’s going on with her. Just, your concern resonated with me.
Dear bon,
Thank you for the insightful feedback. The last thing I want to do to Middle is make her feel as if I’m looking down on her or horrified by/for her.
At the same time, I have to admit I’m scared for her, maybe even something close to horrified. Not because she’s gained weight per se, but because my dad’s illness now seems like a sinkhole into which I’ve lost not only him, but everyone near him. Of the three children, Middle has the most genetic similarities to my dad, and with all these articles coming out about the role of increased body weight in dementia, I have that nightmarish quality horror of thinking I’m going to see this happen all over again with her, and there’s no way to stop it. I guess not so different from my trying to control my mom’s behavior. I never learn. :/
I’ve been running alternatives in my mind to suss out how much is my prejudice because it’s her gaining weight rather than some more socially acceptable self-soothing (eg., retail therapy, (or in my family drinking) or even dramatic weight loss instead of gain). As you mentioned, and in my family as well, none of us are super health nut fit bodies, me included. Being overweight puts me at higher risk for dementia too. I need to pay attention to my own hypocrisy and what amount of my reaction is social stigma. You are absolutely right that Middle needs positive stuff and not me looking down my nose at her.
*ETA, Whoa, this comment is so all over the place, not sure if it even makes sense. Leaving it up.
I have some rambling and I’m not sure if any of it is helpful. I’m sure you’ve thought of all of it already, but I think sometimes reinforcement/encouragement is helpful?? Maybe???
First off, HOLY SHIT. This is all awful. I’m so sorry.
Secondly, I think maybe you are feeling a bit like you’re the only one separate from all this, re your comment above about losing everyone into that sinkhole (which is awful). I have a probably even more awful thought for you, and that thought is that you’re far from untouched by it. I mean, I wish you COULD be untouched by it. I wish you weren’t hurting. I wish you didn’t feel like you have to secondguess yourself a lot because you feel like your first impulses can be unfair.
But you *are* affected. And maybe reminding yourself of that might help you a bit re your guilt. Because Middle is not hurting because you are skipping gaily through life and she’s taken all your pain. She’s hurting because she’s hurting. She’s probably worrying quite a lot about you, too.
Not gonna say you therefore shouldn’t feel guilty. Hell, *I* feel guilty for not helping “enough” and I don’t even know either of you in person!! These things are not exactly 1000% rational, sigh.
I am overweight, and have a zillion issues around weight that I wish I didn’t have, too. Especially when I see that someone has put on weight during a stressful time. (Or when I’m the one who’s done it.) I feel for you, and Middle.
I like the other commenter’s thoughts about sending her little thoughts now and then.
I wonder if your dad (and you!) might like peaceful little apps like Neko Atsume? It’s a cat collecting thing (as you may know already). Where you put out food and toys and see which cats pop up to eat it. They leave you fish each time they visit, which you can then use to buy more food and toys. Different cats are attracted to different things. Very calming.
I’m glad your mom is getting out of the house now and then.
Oof re what she said to you. I am completely talking out of my ass here as I don’t know her (and only know you a tiny bit). Perhaps she was trying to push you away to save you, absolutely. Perhaps she was glad that she knew that you could cope without her being a mother to you in *those* ways (she was, and still is, your mother in terms of loving you). Perhaps it was easier on her (and perhaps she thought it’d be easier on you) to try for a clean break.
I think if I were Middle, I’d want to hear from my delightful older sister (i.e. you!) for various things. Sometimes just for a chat, something about the sillinesses our kids had been getting up to or to talk about a new movie or work or whatever. Sometimes to talk about mom and dad. Veeeery infrequently (because I’m REALLY good at handling kindnesses) I’d like a genuine loving “are you okay”.
I’d also probably like to be asked my advice now and then. Not on big things, and not all the time, because even the sweetest nicest interactions can be frustrating if they’re constant, huh. Just daily stuff, to make me feel like I’m needed and appreciated but the world won’t fall apart if I give what turns out to be the wrong advice.
I don’t know if Middle is like me in those ways, and I imagine you’re doing a lot of that already. But perhaps there’s something useful in there.
You take care, lady. You deserve some love and some relaxation too. You’re working hard as well – I think you’re working harder than you think you are re your dad.
Thank you for sharing.
As mom to a medically complicated kid, who also works outside the home and has to juggle all this crap, I’d skip the weight concerns and just ask her how she is doing. How is she really doing? And she may not tell you, because, f*ck, so much stuff to unpack and she just can’t, or because she thinks you won’t understand, or because she’s just mad at you, at everyone for everything loaded on her plate that she didn’t ask for, or she might tell you something. I wouldn’t push it, just a genuine ‘how are you doing? Really?’ and hope she feels like talking. If she doesn’t, don’t give up.
Sometimes I get so bogged down in stuff, so overwhelmed, that to share means dredging up sad, scary or exhausting bits of information. So I don’t. She might be at that point. But maybe talking to you about other foo-foo stuff might brighten her day. A little escapism.
My mom and I have not had one hard conversation concerning my son. I don’t say much to her about the deep, scary things because I don’t trust her. To keep it quiet, to share accurately, to make it not about her. If you ask your sister how she is doing, listen to what she is saying.
……
My mother in-law passed from the same cancer ol’ maverick John McCain has been diagnosed with. When she was diagnosed, my brother in-law was living in the same town my husband and I reside in, about three states and 1600 miles away. He immediately packed up all his stuff and moved home, back into his parent’s house to help care for his mother. Hubs and I didn’t have the luxury, though I offered it if he (hubs) needed. BiL was a great help, but it created even more friction between him and his father and to some degree, his mother. Their grown child moved back into their home and started changing things to suit him. Father in-law had his way of doing things, BiL had his. My husband went home several times to give them all a break, but it was never the same. My husband struggled with not being there, not being able to help more. He struggled with his father hating on his brother and vice versa. My BiL held it against my husband that he didn’t help more. BiL held it against FiL that FiL wanted things done differently. BiL, by the way, has some anger issues. To this day their relationship is strained. My husband misses being able to mention his brother’s name and not have his dad recount some story about how dumb BiL is. He misses being able to recall childhood stories with his brother without BiL negatively analyzing how their father acted twenty years ago. There is some harmony, but it’s so f*cking petty sometimes it makes me want to poke my eyes out.
I don’t know really what I’m trying to say, other than complicated end of life periods are messy. There’s no how-to book for this, everyone who’s gone through it has a different experience, no hard and fast rules. No one is really sure what they should be doing, how to help, how much is too much, emotions, relationship dynamics..I mean you know this. It’s just hard. And for that I’m sorry I don’t have better thoughts. I think you’re ahead of the game for even considering how the other people affected by this are dealing with it. And I’m sorry that you’ve probably started marking time as ‘before Dad got diagnosed’ and ‘after.’ It sucks. Support your mom as best you can. Support your sister(s) as best you can. And remember to take care of yourself. You’ve got major skin in the game too, and don’t let anyone tell you otherwise.
Hugs, and thanks for letting internet strangers in, and comment on, your life.
I was wondering how things w your parents were going. All love and sympathy. My grandmother faded away so painfully from what we first thought was Alzheimer’s but possibly a series of mini strokes? And it was so hard on everyone, especially my dad as her oldest in charge of everything. And I know the suicide thing in the opener was probably sort of half a joke, lord knows I make them all the time, but my husbands grandparents killed themselves when his grandma started going really downhill not remembering anything and getting really upset, and. Omg was that incredibly traumatic to their whole family, So I get the joke, and I also understand that impulse a lot, but I also lived that reality. It was horrible seeing my gram at the end, but their deaths just echoed like ripples in a pond, and it’s been years and his whole big family still feels like it’s under a dark cloud, Not that you shouldn’t have full autonomy to make your own choices. Any choice, even death. Just. I never realized how much hurt spilled out of that until I lived it. <3 Sorry to be weird and dark and overshary. I just have a lot of feelings on all this I guess.
Hi Emily,
Thanks for the kind words. Appreciated! Hugs for the way this issue has touched your family as well.
I’m glad to get your comment as I was all yesterday wondering if I could get anyone to talk to me about relatives who completed suicide in the face of a dementia diagnosis. I imagine it must be an extremely difficult thing to discuss.
For me, the suicide thing in the header is not intended as a joke. Both my parents had a no-nonsense ‘get rid of me when I stop being useful,’ attitude while I was growing up. My dad used to laugh and say ‘put me on the ice flow like the Eskimos.’
(ref for Inuit thing) https://en.wikipedia.org/wiki/Senicide#Inuit
Of course, that is not how things have played out so far.
I have some mixed emotions about whether my dad, in his right mind, would be pissed as hell about the way things have played out. Or perhaps, with what he knew when he was last coherent, he gained wisdom about it that made him know this was the right way to do it.
Part of documenting my experience of his dementia is to figure out what my beliefs are. In the event I inherit his dementia, I want to go into the situation with a sense about whether it’s overall more pain/money/family cave-in or less to go out quick or go out slow. I know both options are going to leave scars on everyone, but if I can help it, I don’t want to suck my daughters down with me.
If you are willing to talk about your experience, especially because it sounds like you have experienced both, I would appreciate it. Completely understand not wanting to.