Alzheimer's and Dementia Thread

My granddad was sorta in and out at the end. Like sometimes he'd be pretty lucid and sometimes it was like he had Alzheimer's. One time he became convinced that we had moved his house off the hill it was on. Demanded to know why. We ended up just carrying him outside so he could see we hadn't somehow physically moved the house and then he was fine. Crazy how that kind of stuff manifests.

 

Interesting. My dad’s episodes tend to involve wild delusions that have no basis in reality. My kids were over there this past weekend, and he told my mom my 12-year-old son was stuck inside their mattress. It was late, and my son was sleeping so she had to go get him to show him he wasn’t trapped in their mattress.

 

Want to hear some genuinely depressing shit? My mom told me she’s caught my dad looking in the mirror for increasingly longer periods of time. She suspects it’s because he doesn’t even recognize himself at times.

 

Yep, my dad usually reverts to being married to his 1st wife (they divorced in 1968). When the fact that he has a son (me) is brought up, he asks who the mom is because he only had a daughter with his first wife.

It doesn't affect me in the slightest, but my mom isn't able to compartmentalize anything. I don't know how much time is left between now and the end, but I think it would be doing her a huge favor if the end came sooner than later. I'm sure it'll hit me different when it happens, but in my mind it happened like 12 years ago when he had a terrible fall and hasn't been the same since.

It's like Game of Thrones where I just reminisce about the first 5-6 seasons while pretending the last 2 didn't happen.

 

Stuff like this is extremely common. I avoided this this thread at the time (shouldn't have in retrospect, but with any free time the last thing I wanted to talk or think about was the reality of the situation) but I moved in to my grandfather's place the last 9 or so months of his life when he got to a certain point last year and the paranoia driven suggestions were definitely one of the more troubling parts of it. One of his main things was insisting that we were in basically a copy of his house, but it wasn't actually his house and he would demand I take him home.

I hope that's the hardest thing I ever have to do for the remainder of my life. He was more or less my father, being the one who taught me everything and that was always there for me, and seeing someone you care about and looked up to for so long deteriorate like that on a daily basis is torture. I don't regret the decision to do it (my mother and uncle couldn't/wouldn't, so it was either I do it or we have someone he didn't know come in/have to have him put somewhere. I refused the latter especially), but to say it didn't fuck me up and still doesn't have me a bit fucked up would be a lie.

Just an absolutely sinister illness that I wouldn't wish on anyone, or for anyone to see a loved one go through.

 

My mom hated her step grand mother (I wasn’t aware) and was always in fear that she would come by. My step grand mother was 90 and I never knew her mother so she died in the 70s. It’s so weird the way the mind reverts like that.

 

So my FIL just rang the doorbell, wondering where he was and how to get home. After a half beer and some gentle questioning on the front deck, it seems that he thinks he lives in Orinda near Oakland, even though he moved to the Santa Cruz area in 1970. Called MIL and she showed up after 15 minutes, told him to get in his car and follow her home. This can't end well, either today or sometime soon.

 

Oh, no. This seems bad.

 

I offered to drive the car home later but she said no let's try it. He wasn't supposed to drive himself down to golf today; she was supposed to drive him, but when she came home from an earlier appt. to drive him to golf he had already left. He's probably at the point where he shouldn't drive anymore, she'll probably have to start hiding the car keys

 

Time to yank those keys big time

 

Yeah, we had to make the decision to take my dad’s keys about 2 years ago. It didn’t go over well, but we didn’t give him a choice. It got really ugly when we told him we needed to trade in his truck, but it was a legit safety hazard having my mom drive a huge quad cab truck.

 

So far he's been good-natured and amiable about his forgetfulness and confusion (and in 34 years I don't think I've ever seen him truly angry), but he hasn't really had to contend with an appreciable loss of independence yet

 

Bite down hard. There's no way for it to go well, it is one of the parts of this disease that just suuuuuuuuuuucks. But the family of the kid who gets run over is not going to care how hard it is.

 

Still loves his pancakes. He rarely cooked but would stuff everyone's faces with pancakes when he did.

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That’s awesome! Glad you are getting to spend some time with him!

 

All of the feels, man.

 

Been avoiding this thread for a while for the wrong reasons.

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My Dad has been on a slow decline for years, starting at 64-65. We had to take his car keys away a few years ago after a scary car crash, and he's basically been on house-arrest since then. My mother still has to work full-time (thankfully, they ran their own business, so her hours are flexible), and she can bring him to the office sometimes, but when she's home he has to be around her. My Mom is not doing great as a caretaker -- she's stubborn, short-tempered, and only wants to sit around and drink wine with her dogs every night. My Dad, after being alone a lot of the time, wants to talk, but his conversation skills have become so limited that it's just the same redundant questions 10-15 times in a row.

I come home 4-5x/year, and even though I work fully remote, you can't work around him. If he hears anyone talking in the house, he bursts in to see what's going on. I've had countless calls with clients where he walks in and demands to know who I'm talking to. If I'm typing on my computer even, he comes and sits next to me and starts asking if I knew his grandmother, why I'm not moving back home, really difficult questions. I'm patient and do my best to answer, but it's full-time caregiving mode.

When I was home for Christmas, he started asking me if I knew his son. That's when I knew something had shifted. We went to Christmas dinner with my extended family, and he would pull me aside and ask "who in the hell are all these people?" Family members he's known for decades. Whenever there's a bad episode, my Mom calls me and puts me on facetime, and we can usually calm him down. This happens about once every 2-3 weeks. My sister is no help, my mother gets stressed too easily, so it all falls on me. And I'm happy to help in any way I can -- my parents gave me an incredible life -- but we're getting to a crossroads.

Twice this week I've been called at midnight because my Dad wakes up and doesn't know "this woman in the bed." Even after explaining it to him, he refuses to believe it's his wife, doesn't believe they've lived in the same house for 30 years, doesn't believe it's my mother. Starts asking incoherent questions about "where I was born," "did you see her in the hospital when you were born?" Or just demanding to walk down the road "to the bay house." There never was a bay house and they live way in the sticks. The other night my dad became incredibly emotional because he realized his parents had passed away -- his dad/my grandfather passed away 20 years ago and his mom/my grandmother passed away 10 years ago. My mom just screams and cusses, yells "I'm not doing this!" and leaves the room.

So we're basically telling my mom we either need a move-in caregiver ("I don't want a stranger living in my house!") or find him memory care ("this is the only place he knows, not doing that."). I don't really see another option at this point. She's not budging on either, just yelling and typing emails/texts "I DON'T KNOW WHAT TO DO." I can't imagine what she's going through, but she's also never been one to make a difficult decision.

Has anyone had to deal with the still-coherent partner? I'm probably going home pretty soon and having a quasi-intervention. Not sure what else to do at this point.

 

Also, if anyone is like me and worries about following their parent's fate, highly recommend "The End of Alzheimer's" by Dr. Dale E. Bredesen.


There have also been a ton of studies linking Alzheimer's with poor diet/poor health.

Purely anecdotal, buy my dad was one of the unhealthiest people I knew. I can count on one hand the amount of time I saw him eat vegetables or fruit in my lifetime -- just burgers, steak, and fish. Never anything else. Never exercised whatsoever. It's one of the main reasons I switched to mostly vegetarian (I eat a shitload of blueberries and other brain super foods) and stopped smoking weed. I firmly believe in the gut-brain connection and that your diet impacts so much of your cognitive function.

 

gut-brain is real

Parkinson's runs rampant in my family on both sides, can't count the number of times I watched the muscles in the stomach go haywire and trigger episodes of confusion/delusion and then ultimately morph into full blown dimentia

Shit sucks man hang in there

only real advice I have for you and fam is to not blame yourselves for any hard decisions made

 

Idk your situation and you may know this but we heard to not tell the person their parents or sig other was dead. It will be like the first time they found out and they'll forget again in 30 mins. Just say they're across town or "on their way."

 

Man, I'm sorry. Glad you joined us.

What a terrible disease. I'm also sorry you're joining us.

Yeah, my parents were late 50s when my mom was diagnosed. Dad cared for her as best he could for now about 8 years. Or thought was that he, supported by me and my sister, would keep her at he until her disease progressed to the point where she didn't have a grasp on where she was, and then it wouldn't matter where she was.

But that plan didn't survive. My mom continued to require more and more help with basic shit, and I saw it killing my dad. He was becoming just a mess of anger, sadness and frustration. He was starting to get a little neglectful. I told him, directly and declarative, that we needed to move mom to memory. It was really hard. I'm glad I did.

My dad was not Ideally cut for this caregiver role. Sometimes I wish that he were. Sometimes I feel a little resentment that someone else, myself even, probably could've done a better job in that role than he could. That doesn't matter. We are who we are, wishing things were different solves nothing.

Burnout doesn't just suck, it's a sign that things are unsustainable and unsafe. My dad is tight fisted AF, and I had to convince him that it was time to check mom into memory care, even against her protests.

Those protests, that obstinate insistence that "I'm fine, I'm not going anywhere," that's not my mom. My mom would never, ever want us to suffer like this.

My sense is that what you're describing, that's not your dad. What would your dad say if he could actually step into the room and see how this disease is causing suffering for your family?

It sounds like your mom cannot continue with this. And she also needs some compassionate yet firm, direct and explicit guidance about what to do. It's really hard for the person in the thick of it to discern that moment, even when it's clear to others (including college football message board observers)

I get asked all the time in my practice how to know when it's time for memory care. The answer is, when you can no longer manage to provide care at home without incurring significant harm to your own health (including, and especially, mental health). I've seen too many caregivers die before the person they care for. Most people, after all is said and done, wish they would've made the move sooner.

DM me anytime if you wanna talk, have a phone call, anything. Goes for anyone itt. All my best.

 

Literally every single point in this post is relatable for any of us who have posted in here.
Also fwiw, on your point about health/diet, my mom was healthy af so you know

 

Purely anecdotal of course, I've had friends tell me their parents were also healthy as hell before showing signs. There's not really a trend of Alzheimer's in my family (that I know of), my grandmother lived until her late 80s, smoked a pack/day for 60 years, and was never as bad as my father is now.

 

Thanks man, really appreciate the thoughtful response.

This really hits close to home:

My mom has been an angry, bitter person over the past few years. Some of it is other circumstances (friend's passing away suddenly, other family dynamics), but dealing with my dad every single day of her life just adds fuel to the fire.

I talked with my therapist a lot about these issues, just before it got this bad. He encouraged seeking help, because my mom/myself/family members aren't professionals. While not perfect, these facilities and professionals exist for a reason. He also helped a lot with the guilt factor -- really, the only way to not feel some fault is to quit your job and move home full-time, which just isn't feasible for most people. "You cannot blame yourself."

 

Stay centered on the essential question: "what would your dad want for you?"

Totally get the guilt. My mom would want me to live my life, have joy, be healthy, raise my kids. I'm willing your bet your dad was the same.

 

Mine too.

Only so much you can do. Life is unfair. We get the life and time we get, and while it's important to tend to one's health, doing so in neurotic anticipation of disease is paradoxically unhealthy.

 

I lived through it all in 2021-2022 with my dad. There are no easy answers, it’s a shitty (and extremely personal) situation all around.

My only advice is to do whatever you need to do to feel satisfied/fulfilled with how you handle everything. What you need is different than what your mom, dad, sister, etc needs. You only get one pass through this with no replays.

It sounds silly, but it’s mostly about no ragrets.

 

My dad hasn't had a delusion like that that I'm aware of, but he is overly protective of his grandkids. He seems to think they're in danger in situations where they are not.

 

I’ve used the terms fulfilled and satisfied about dealing with my dad’s death a lot. It’s because I couldn’t change anything, I know myself best, and I knew deep down what I needed to do to honor myself, my father, and my family.

A lot of days it would have been easier to practice active avoidance, but that would have been cheating myself. I realized early on that I felt most fulfilled facing everything head on no matter the pain. It’s what worked best for me and I am very proud with how I dealt with the hardest situation of my privileged life.

Just sharing my experience which is different than all others. Do what you need to do.

 

My God, it’s like you typed out my life. I’ve been going through the exact same things and have reached my breaking point. I moved my parents from my childhood home to an apartment near me about two years ago as my dad continues to rapidly decline.

Activities of daily living are now challenging, which infuriates my mom, who clearly isn’t cut out for caregiving. “God, will you hurry up?” “You already asked me that!” “No, you’re doing it all wrong. Just give it to me!” Rinse and repeat.

Mom’s physical health is also incredibly poor. She’s overweight, diabetic and has neuropathy. She’s twice had to go into the hospital for various things, which we’ve had to scramble to figure out (for lack of a better term) a babysitter for my dad.

She refuses in-home nursing help bevause, “I won’t have strangers in the house!” and won’t put him in memory care because “he’ll just die there.” The reality is he’s already dying, and at least he’d be safe and comfortable there, but she doesn’t care.

I finally convinced her that they both should move to assisted living. She honestly needs it almost as much as he does, but she continues to drag her feet on making it happen. It’s excuse after excuse.

Like yours, my sister is useless. She’ll bitch and play bad cop over texts, but it’s me that’s had my life upended time and again. It’s really put a strain on both my mental health and the way that I view my mom, which is really unfortunate.

 

My mom used to think her step grandmother was around and they hated each other. My mom was 77 her step mother was 91 so the grandmother would be 120. I would argue then I just agreed since she wouldn’t remember.

 

My fiances mother is headed downward so fast. Its unreal. I think shes going to be done driving soon. This is going to be tough.

 

Do what you can to convince them that driving is a bad idea. Often, the family allows it to continue out of convenience but it's putting other people at risk as well as the family member.

 

This. We probably let it go on for too long.

 

I admit we did. My dad needed dialysis MWF for three hours. The dialysis center was 1.4 miles from his house, adjacent to the lot that used to be the batting cage that he drove my brother and I to as kids. He insisted that he could drive himself. I would ride along once a week to make sure he was still good behind the wheel and he never did anything to give me pause. One Wednesday morning we couldn't find his keys and they turned up in the freezer. It was a clear sign that change needed to happen. To this day I am thankful he never wrecked.

 

She lives in my house. She's going to have to do what we say.

 

Struggling with my dad and his weight gain. We’re doing a last family vacation in May in Scotland and Ireland and I doubt he’s going to be able to go distances due to his shape right now. My dad has been just stacking on the weight and is truly fat. We got him an elliptical and he’s promised to use it, but forgets the conversations, forgets what he eats, and is just wasting away in his chair by the day. He’ll even say “I need to lose weight,” and then will forget that he’s come to that conclusion and continues to sit.
Walking and exercising would be massively beneficial for him physically and for his brain, but nothing sticks and he makes 0 efforts to actually move daily.

Dementia sucks. This is like watching a slow moving train wreck that’s taking down everything around.

 

While this current situation is difficult in it's own way, at least he is still enjoying eating. As it progresses, he will likely go the opposite way. Hang in there, bud.

 

I didn't want to add the comment since it's not super helpful, but this is what happened with my mother-in-law. She lost so much weight unless my wife is there constantly pushing her to eat.

 

After 3 grueling years, we finally received a proper diagnosis on my dad.

He officially has dementia (easy to figure out) triggered from Wernicke-Korsakoff Syndrome.

If he had done proper treatment early at least some of it could have been reversed.

The combination of insurance kicking him out of rehabilitation too early, me being too busy with my life, my sisters (all 5) refusing to help and my dad himself refusing to believe anything was wrong with him just fucked that whole window.

He's just fucked mentally and it won't ever get any better.

Because he refuses to accept anything is truly wrong he won't do anything to compensate for his disability and gets irate when a long-term care facility is even mentioned.

The whole experience has sucked and could have been avoided and has been taxing on my wife and older daughter.

If you're reliant on substances, I would stop. Don't be like my dad and drag down your family being a selfish, miserable fuck.

For anyone curious what it's like, these 2 links really describes it well.

https://www.ninds.nih.gov/health-information/disorders/wernicke-korsakoff-syndrome

 

My grandma did the forget to eat thing. She was only like 110 lbs when she was healthy but got down to like 90lbs at one point.

 

Grandpa's dress coat and Nazi poker

Going to make a shadow box with patches, medals, bayonet etc

 

My parents are missing my daughter’s birthday dinner tonight because Dad pissed all over himself, the bed and the floor a few minutes before we were supposed to pick them up. They can’t get into a home fast enough.

 

Welp, dad's probably about to die. He's currently at hospice for respite care. My back (debilitating sciatica) and car are currently fucked (hopefully getting a new one tomorrow) so I can't go visit.

I've mentally said my goodbyes, so I selfishly don't want to see him again because he's not able to recognize me anymore.

I'm really dreading this eulogy. A lot of regret centered on never really connecting. We're the same person in a lot of ways, I'm just more aware and actively try to connect with my kids. But I still have trouble connecting with my son, so reconciling that should be fun. Blah more whiskey!

 

I empathize man. Sorry you're going through this.

 

I'm sorry, man. What a complex sort of grief to process.

 

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This is how I process