First Post (Mom's Caregiver) - It's a long one but please read if you can

purplemoose412

This is my first post so it's going to be lengthy and I apologize in advance. I don't know why tonight I got to the point that I felt the need to reach out but here we are. I am my mom's caregiver and it's just hard. I'm a 45 year old female, married to my husband of 21 years and we do no have children. I'm one of those girls who did not have a good relationship with my parents growing up but once I grew up, they became my best friends.

My dad passed away suddenly in May 2022 at the age of 66. My mom has struggled with memory issues for at least five years starting in her late 50s/early 60s; she just turned 66. The thing about my mom? She refuses to get fully tested so we don't actually know what's wrong with her, just what we can guess based on familial history and a very brief appointment with a neurologist that she didn't finish the testing on. On her dad's side of the family, her dad, his sisters, and his mom all had early onset Alzheimer's and Lewy Body Dementia. After the one partial visit my mom had with a neurologist, she refused to see them for the results but my dad called to get from them what they could and they said she had confabulation. And when you look up what that is and have a conversation with my mom, it's textbook.

Things about my mom:

1. She still lives alone in the house her and my dad built, although I do spend every weekend with her. She is able to take care of herself - she cooks, cleans, does laundry, etc. I pay the bills.
2. She can't drive - she gets lost any time she has tried. I'm not complaining since she took that away from herself so at least I will never have to have that argument (hopefully).
3. Confabulation is alive and well. She definitely makes up stories and it doesn't matter if she will tell you one moment that she knows she doesn't remember things correctly, you CANNOT correct her because it turns into a thing.
4. She had Large B Cell Lymphoma twice and follicular lymphoma now that is currently dormant.
5. She sometimes still forgets my dad died. And when she does remember she likes to relive that day over and over since she was there.
6. I could go on forever.

Things about me and dealing with the situation:

1. I am her #1 caregiver. My husband and I take her grocery shopping every weekend, out of the house somewhere every Saturday, etc. If we don't do it, she doesn't have a means to getting out and about.
2. I work a full-time job - 60+ hours per week.
3. I have depression and anxiety; it's something I have lived with for 25ish years. And guilt motivates me and people know it's a hot button so they can push it to get what they want.
4. I have control issues.
5. I do see a therapist and a psychiatrist.
6. I have a brother and sister - but I put my mom's needs first. They don't. They tell me they are worried about me and how much I do for my mom but when I do ask them to help, they don't always because what they have in life comes first. They have kids and we don't so the kids always come first.
7. I haven't even begun to grieve my dad and I don't think I will be able to until my mom is also gone. And he wasn't just my dad - he was my mentor, my best friend, and I also worked with him everyday.

I'm tired. I'm exhausted. I'm frustrated. I make sure to call or text my mom every day to make sure she is alive. She has her own world that she lives in and sometimes I lose my patience (and mine is far greater than my other relatives). She repeats herself all the time. We get on a loop and can't get off. She can get argumentative and over emotional. She thinks that she's the only one who is suffering from my dad's death and that no one else is/has suffered like she has. She cries every night (classic sun downing). I do my best to just go with whatever she says because I know correcting someone is the worst possible plan.

But I have to deal with it all. I'm the one she calls because she trusts me and knows I will pick up. But she likes to say that no one likes her or will spend time with her and even when I remind her that I do, she says it doesn't count because I'm always around. I'm the one who has to make sure she is taken care of, that she gets groceries and her bills are paid. I am the one who NEVER gets a break because even when I ask for help, I don't get it in the ways that I need. But I'm also the one that remembers when she said a mean and hurtful thing and she doesn't because she doesn't remember having the conversation.

I know that if I didn't work where I work with people who know my situation and support me that I most likely wouldn't have a job because I have my mom calling or texting all day, I'm so exhausted I can't get out of bed, I have insomnia so I can't sleep but when I finally do I can't wake up.

She refuses to even discuss what happens if she can't live alone - says she will not go into a nursing home, assisted living, retirement community, etc. and would kill herself before that happens. She couldn't tell me how she would do it though so I felt I didn't need to worry about it. And I understand. I hate seeing her like this. What's she's doing 90% of the time isn't living life. She's a prisoner in her own home and mind. She always thought she would pass away before my dad - we all did. No one was prepared for him to die first.

And I don't know how to fix any of it. I don't feel like I have anyone to turn to who can truly understand what I'm dealing with. I can't turn my back on her and I'm trying to do what I think my dad would want, but at the same time how am I supposed to live like this for another 20+ years if she lives that long? And she won't get help. Partially because she thinks she already did and no one could help her. And then the stories - she says these things about people that aren't true/didn't happen and is so convinced that it is burning bridges. And I feel like I have to constantly go behind her and apologize or correct her.

I don't know how anyone deals with this. I know that at some point she's going to be where she can't live alone and that something will need to be done. And my brother and sister want to have a big family meeting about it (without my mom). But they won't have to deal with the fallout. And how do you force someone to do something they don't want to? But I also don't think that I can move in and live with her either.

I'm so sorry for the lengthiness of my post. I could go on and on but I won't for now. I feel like caregiving and talking about what I have to deal with my mom is taking over my life and soon I will be on an island by myself without any support. I guess this post is me asking how to find my life jacket.

M1

Welcome to the forum. You need to talk to a certified elder law attorney as soon as possible to get power of attorney for her, that's step one. You need to be making the decisions based on her safety, she cannot. Quit trying to reason with her, and read here to find workarounds. Compassionate lies or fiblets can be your ally here. she likely has anosognosia, where she actually thinks she's fine.

Your siblings may be right about the family meeting, honestly. But if you want to be the hands on caregiver, then you should have the powers of attorney. If you don't want to be the caregiver, there are professional care managers you can hire. You don't have to shoulder all the responsibility alone. But if you decide to let someone else do it, you need to let go of the guilt. You did not cause this or do it to her, the disease did.

towhee

Welcome to posting. You never need to apologize for a post, I am glad you felt you could reach out. Many of us understand, you are not alone. Things have gotten worse gradually, and now you realize that you are in a position where you can no longer cope by yourself, but you are so mentally and physically exhausted that you can't think straight and you see only negatives to every possible solution.

I will try to reply more later, but I think the most important thing you need is sleep. Talk to your doctor and therapist. When you are trying to move a heavy stone you can shift it a little here and a little there, every little push makes a difference.

Ci2Ci

Sending hugs.

It has been said that Caregivers are the 2nd victims of dementia. Very true. You have to be able to protect yourself as you try to care for your LO, however you can. If you are manipulated by guilt, understandably this will be very tough. But, thinking in terms of 'if I'm not healthy, I can't help anyone' would be a good strategy.

If you/LO would be able to afford ALF as a long-term care option, could you get her to try a 2-week stay at one? Not discussing it as a possible permanent move, but as a 2-week getaway for her while you {do some home repairs at her house}?

When I was desperately seeking adult day care or respite care for myself, I learned that ALFs will offer what they call respite option -- which is more like a trial of their facility, really. So, it isn't cheap.

What if you Mom actually liked it there? If you got so lucky, you could then tell her that she could continue to just live there, if she wanted. (And NOT move her back to her home at all.) If she agreed, give it a good amount of time for her to forget her other home and/or just decide that was better. At some point, PWD can understand that they can't live alone. And, getting to see a life that is easier for them, can have real appeal.

Now, she very well might hate it. But, what if she didn't? Is it worth a shot?

Mama9496

This is the first day of being a member. I read your whole story and I feel we are going through similar issues as I am sure everyone here is. My parents are 88 and 89. Dad’s dementia started about 4 years ago. He has passed the angry old man stage and is now at the toddler stage. Pouting or agreeing with everything anyone says. His short-term memory is mostly gone. Mom has Parkinson’s and her memory and ability to find the words she needs to say are getting worse. It makes her mad and she has started blaming everyone else for her confusion. I go in with my dad to his doctors’ appointments. She refused to let me go in with hers. Finally, she let me go into the last one with her because her neurologist put it on the after-visit summary. Apparently, she has been keeping important issues from her dr. And what her doctors are telling her.
I was able to get them in to the independent portion of an alf. They had been at the same house since 1967. They have been at the facility for a year and a half now. And are happy, I did have to con them a little bit to get them into the place they are. It took a few months for them to get used to the change. It is 3 miles from my house and I can be there in a flash. I really pushed the fact that she would be around more people their own age. Which stopped with COVID. She would not have to do the cleaning especially the bathroom. She would not have to cook. There are activities and trips to the local casino. So, they are happy there. If you can get your mom in it will help with your emotional and physical wellbeing. Also maybe time for you to breathe.
I have been driving them around for about 2 years now. I lost my job which turns out to not be the worst thing that can happen. You are an amazing woman to try all this alone. My sister (59) and working she also has all sorts of “helpful” advice and direction. She lives further away and comes out every other weekend and we all go out to breakfast and play cards. .
I am a 62-year female married since 1988 and my 29 year old son lives with us. I am struggling with depression and grief and this has only made it worse. It is overwhelming. I have started seeing someone for help. But so far, it’s just breathing and how did that make you feel. She did give me this group so I am thankful for that. I’m probably going to stop going. I really just want to know that I am not the only one and that it’s ok to complain without being judged or just nodded at. I’m not expecting things to change, just want to vent. I’m hoping this group will help. I try to go with a little humor some of it is dark and you need to know me a little. I hope this will help you a little.