Advice dealing with dementia

[Bobbyw]

Hello, I don’t know if this is a topic that is allowed. If not, feel free to remove.

My father has dementia. And I was wondering if someone could give me some advice on something. He has a live in caretaker. But I visit every single day. Recently, right when I leave, he calls me and ask why I didn’t come over. I know I know I know, you are not supposed to correct people, like if he says he had chicken, but he had beef, he had chicken. But it hurts so much because he’s basically saying that I don’t visit him, and it hurts soooo bad. And I said dad, I was just there, you were having Cheerios and I was sitting with you and having coffee. But he insists that I didn’t and that I don’t come visit him. My siblings very rarely go visit him. I’m all he’s got. It kills me that in his mind I don’t visit…
Any advice?

[Dazercat]

Oh man. That’s heartbreaking Bobby.
I’m so sorry to read this.

Hey, as long as we are sober I think almost any topic goes. As a matter of fact there’s a thread out here
https://talkingsober.com/t/life-transitions-in-your-elder-years/182339

I haven’t read too much of it. But the people on there are some of the best people around here. Maybe something on there could help you. You could join in if you’re comfortable. I bet someone would be willing to share their experiences strength and hope.

I know what it’s like too. Both my parents had Alzheimer’s or Dementia at basically the same time. I got no help from my sister who lives near them. That’s not uncommon I’ve learned that siblings can grow apart during this difficult time. We didn’t talk to each other for over a year. We are good now my sister and me. But she really sucked.

I remember flying from California to Boston to bring my mom to my condo in California. And I flew back with her to the assisted living place in Boston. Everyone was asking how her trip to California went. She said. “I didn’t go to California!” By that time I just laughed. It was a brutal trip. She thought she was in Canada most of the time she probably never remembered it. But I do. I made a nice picture book. Showed it to her. Didn’t help much. But you know. I got no regrets. We had a great time. And she was worth it.

Sorry I went on so long. It just really hit home for me. She even asked me when I got home if I was coming to see her. I tried to tell her I was just there. But she didn’t remember. So sad.

Only advice I got is.
Continue to try and put yourself in her world. She told me she saw my grandmother. Grammy has been dead forever. I just said. That’s cool! How did you find her? I think she said at the hospital.

It’s brutal man, watching your parents deteriorate like this.

Check out that thread. I bet it could be useful.
Sorry again for the book.
Big hugs to you

[ICanAndWill]

I am so sorry to hear that. It’s so difficult to not take it personally.

My wife is 22 years older than I am. Both of her parents have since passed; however, her mother had dementia and died “hating” me.

It took a while for me to emotionally separate myself from what she felt and what was true.
She didn’t remember me spending the day with her in the hospital when she broke her hip the first time, not making her favorite meals when she came home from rehab. She couldn’t remember me making her coffee and asking if I could take it to the porch for her, her refusing and then spilling it on the way—she genuinely thought I spilled it on purpose!

It’s painful to watch someone we love decline, and to have memories be forgotten…let alone something that just happened.

My wife is now beginning to forget things quickly. I used to get upset. But I had to let it go, which was hard. I’m holding onto my past wife, not my present wife.

And it’s impossible to forget something on purpose.

He might not remember you visiting, and he might think that you don’t visit at all. But you know and you do

I had to learn that my acts of love were (and are) acts of love for them regardless of if they are acknowledged.
I figured what would upset her more: fighting to convince her that she’s lost her mind, or let her think I’m an asshole even though I’m not.

I hope you find peace in this very emotionally charged time, and keep hope that although it might not get better, that one day they’ll know the whole story of their life—even the bitter end.

[Bobbyw]

Thank you both so so much. Just hearing your experiences helped. It really did. Especially about the siblings not helping, mine actually work against me, they didn’t wanna caretaker because of money. My father was a truck driver, and he has a good pension, and my mother saved money very well for him to be comfortable and taken care of at the end of his life.

But you know, one thing that makes me feel so so good, is that I’m sober! Even though he might not think I was there later. I was there. And not just physically there, really there. I get calls in the middle of the night and I’m ready to go, back when I was drinking. I would’ve been in no condition at night to drive. Now I can be right there. And that’s something we all can learn from. One of the 10,000 benefits of being sober is that you can spend quality time with our loved ones before they go.

[SassyRocks]

Hey Bobby, we moved my parent’s (90 and 89) to an independent living facility nearby us here in western North Carolina US last fall 10 days before Hurricane Helene hit our area very hard. Needless to say, they were not very happy with me. My Dad is good cognitively, but my Mom got knocked down by lost dogs after the hurricane and busted her head and has been slowly deteriorating since then…good days and bad days. Right now on her bad days, she thinks I may be conspiring with her doctor to send her somewhere. On her good days, all is fine. My 3 brothers (one is incarcerated, so not of any help, but is a lot of worry for my folks), well, my brothers are up north and no help. It is complicated, to say the least. They do their best.

Many days I am grieving saying goodbye to them, even tho they are still here. And grieving being the child, now the caretaker. Helping my Dad empty his catheter is not something either of us want, but here we are. Taking over my parents finances and being responsible for all that is not a job I wanted, but I can do it. I much prefer the times when we can just sit and chat and we are all feeling good. Not enough of those days, but there are some.

Like you, I am so grateful to be sober for this stage of our lives. Like you, I can answer the 7am call and not feel like death and I can drive over at 9pm with no worries. That is a blessing.

We know the truth of the situation and tho it is hard to see our folks agitated or believing something else, the reality is we are also doing our best, as are they. This stage definitely calls for one day at a time.

Be well and take care of your self, you deserve care and love as well.

[eph-M-eral]

Hey Bobby, I am so sorry you are going through this! I am sorry any of us has to.

My Mom was diagnosed with Alzheimer’s in 2018, and less than a month later, my Dad passed and she was moved to assisted living (my siblings’ choice. I would have preferred she stay at home a while longer with a live-in caretaker). She was actually on the relatively independent unit to begin with, but then moved within the same facility to units with increasing care (particularly as she declined during covid) until she was in the dementia unit. Last year, she was moved to a whole different facility that provides greater care for her, she is in fairly late stage now.

This journey has been anything but easy. Before covid, I would visit and work from her city one week per month. We had a calendar in her room and I wrote the dates I would be visiting on it, and in a notebook/daytimer I wrote what we did every day. When she called, I could redirect her to those, which helped some days.
When covid hit in 2020 and she was not allowed out of her room, there was one evening I think she phoned me 17 times through the night, not remembering her previous call(s). This was when she could still operate the phone. (This was also when I realized wine wasn’t helping.) Even after things lifted, during the weeks I visited Mom while working from the city, she would often call later in the day, not recalling our visit, sometimes sounding almost desperate to see me.

It’s an awful feeling, to think that a parent thinks we don’t care, when really we care beyond what they can understand in their current state. It does hurt so bad! This is the stuff I tried to numb and could not!

A strategy I heard, and what has helped me a lot is to keep my mind alive to who my Mom was at her highest capacity, how she would want me to remember her. I would talk - not out loud, but in my heart - to that Mom, and still do, during our visits. “Hey, Mom, I know you know I’m here. I know you know how much I love you.” That kind of thing. Sometimes, if she’s sleeping, I keep the convo going in my head. “Guess what? I don’t drink wine anymore! And I miss you, I miss our long chats and walks and coffees and always bookstores.”

This fixes nothing about the situation, really. Your Dad, as he is, will still call you and ask you why you don’t come. But maybe making some space for the thought that your Dad, somewhere in there, knows you did, and that he’s damn appreciative and proud of you… for me, it helped.

Thank you for posting about this. Sending you strength and comfort.

[erntedank]

Big hugs your way

It hurts very much when loved ones deteriorate mentally. My grandmother had Alzheimer back in the 1980s and was taken care of at home as then no facilities for dementia were available here.
It is heartbreaking when they don’t remember your love and care and it is challenging when they are in anger/rage/mistrust mode.

I remember reading several books on dealing with dementia which helped big way to understand and deal with it in daily life. Digging into the literature also helped with my ex-husband’s grandfather 8 years ago, he had early dementia and was alcoholic. That was a short but very challenging time, he died of another health issue after several months.

Our loved ones know that we are there and care emotionally, they just can’t remember it.
Sending strength

[reeseycup]

Hi there, I work in eldercare with a specialty in dementia and end-of-life care. My grandmother also has dementia, and I helped care for her at home until ultimately we had to move her into memory care this year for her safety. Your story, and the ones shared above, are sadly all too common.

Many others have shared lovely advice and words. I will share a few nuggets from my experience working in this field.

It may sound counterintuitive, but there is such a thing as “therapeutic deception.” All too often I make promises to my patients that I’m going to take them home, but first there is a music preformance/art class/mealtime/etc. Perhaps suggest activities to his caretaker to keep your father occupied. What did he do for work, what hobbies did he enjoy, what genres does he like? He may not be able to go fishing hunting, but he may be able to watch wildlife documentaries. He may not be able to do woodworking, but he may be able to sand or paint birdhouses. Activities will differ not only for each person, but also for each stage of the disease.

My only advice for you at this time would be that when he calls, don’t correct or attempt to remind him. Let him know that you have a visit coming up very soon, then redirect the conversation to reminiscing about shared memories and what you have planned. As difficult as it is, try to separate your father from his disease. And be kind to yourself, as it sounds like you care very deeply for your father.

I often say to the loved ones of my patients, that even if they don’t know (pointing to head), they know (pointing to heart). As painful as the story of dementia is, you are doing a beautiful job walking alongside your father. I wish you both nothing but peace and joy.

[Ray_M_C_Laren]

My dad had Parkinsons and Alzheimers my mum looked after him i moved back to the family home when i was separated from my ex . i was starting my sober life he got worse and i was getting upset and angry at his reactions . i spoke to my sponsor and he asked me did i love him i said yeas so he said tell him that remember who took you in and made you welcome i did i started to do things for him save my mum shave him take him to the toilet cut his hair and i told him i loved him gave him a cuddle sometimes he didnt responded but it was for me and i grew up then . and i told my mum aswell it became easier to say and helped me with my recovery . when i started my landscaping company we did nursing homes which had Alzheimers wards i built site,hearing, sound , gardens for them , hope this helped . wish you well

[Bobbyw]

Oh my God, I can’t tell you how thankful I am for all of your responses. I picked up nuggets of wisdom, practical advice, and most of all, just like with my addiction struggles, I’m reminded that I’m not alone. I feel a special bond with each and every one of you no matter where you are on this planet.

The hobby thing, I did to the fullest. My father was a truck driver, but he was a cabinet maker on the side, and he taught me. In the beginning, I knew something was wrong in the shop, I didn’t know it was dementia, but I had to pull the plug on the power tools. At the time he was using a lathe, which cannot only be dangerous, even deadly because you can get caught in it. But I said Dad, I will cut you out anything you want on these tools and we can work together just like when I was little. So we started our own little Bird House making company, it started with just giving away to family and friends, we just passed 100 sales. I’m Etsy! And it’s perfect because I build the houses and he can glue the little pieces of wood for the window and the door on it. He was using a drill, but now it is just the little pieces of wood and glue. And someone said to remember him at the highest, he was a dynamite cabinet maker! We would be working together recently and he would say, how can you do that? And I just looked at him and said I had a good teacher.
Thank you all again for the bottom of my heart, Bobby

And I know this was a little off-topic, but really it’s not, it reminds us that life will still be difficult, what changes is our ability to handle it. And I am just so thankful that I am sober if I was still drinking through all of this, the birdhouses wouldn’t have happened, I wouldn’t have been “present” so at least when he passes I won’t have to carry that guilt until the day I die…

[erntedank]

I’m grateful you feel supported, you are definitely not alone.
Please feel free to share further, vent when you need it, come back on the topic whenever you want. We are here. Sending strength and hugs

[MandiH]

I just have to say this post sure hits my heart. I lost my grandfather to this awful disease and so much of this speaks right to my heart as I’ve always been super close to my grandparents. Burying him when I first got sober was the hardest thing I’d ever done, but I did it, thanks to some amazing people I met here. And 7 years later, I’m still helping to take care of my grandmother, who I am sure has some dementia now. She’s lucid and can remember some things about half of the time, but the other time she has no memory about many things now.

I absolutely love the way things were modified for him to help with the birdhouses, that is absolutely beautiful! (And I’m actually in the market for one, please send me a private message with the link to your shop!)

I’m just sending allllll the love and am grateful to know that we are never truly in it alone! My heart is bursting from this thread. Huge hugs and love to all!

[SassyRocks]

@Bobbyw

And I am just so thankful that I am sober if I was still drinking through all of this, the birdhouses wouldn’t have happened, I wouldn’t have been “present”

Yes, being sober through this is truly a blessing.

[tailee17]

Some lovely beautiful posts from everyone. I wanted to share. I was caregiver for mother in law from my past life. She lost almost all short term memory. I had to take her to the lab for bloodwork weekly. Knowing she would not remember 30 minutes before I would make up some of the most outlandish stories while we drove together. We kept. Chatting and she seemed happy. Not the case when she didn’t have memory loss. She wasn’t a very nice person. She would get a mocha everyday and when she had finished it she immediately would ask if we could go get her a mocha for the day. It was tedious it so eventually learned to accept how her mid worked.

I agree arguing a fact regarding memory of event is just upsetting for you. Smile Be kind and love them.

[Bobbyw]

Guess what? It worked.!!! so when I was over there yesterday morning, I took his little pad of paper and said, Bobby was here, I love you! And he actually called me as soon as I got in my truck. And instead of saying Dad I was just there. I said but I’m gonna come see you tomorrow morning. He goes really? I go yep and he goes. Oh that’s great and it turned the conversation from negative positive. How great!

I still can’t believe that someone suggested a hobby and I have this Birdhouse thing going, I’m gonna send you a quick picture of them, I’m reluctant to send a picture of us working together, which I do. Have we work on the kitchen table now because the sawdust bothers him in the shop.

[Dazercat]

I love all of this

[tailee17]

So wonderful for you both. Love the birdhouses.

[reeseycup]

That’s amazing!!! I’m so, so happy that it helped. And those are beautiful birdhouses! So grateful that you and your father can connect and make something genuinely lovely together. Amazing job!

[erntedank]

I’m happy for you and the birdhouses are wonderful!!!

[SassyRocks]

That is wonderful news!! What a great moment for you both!!! The bird houses are amazing!!!