There goes my hero ..... 😢

squeez · March 26

Hello and thank you for reading this,

I'm sorry for such a long-winded post I had a longer message written up. However, I didn't know if anyone would read it. I don't have anyone in my life who has had any first-hand experience with Alzheimer's to ask any of these questions and I'm having a difficult time dealing with everything which is why I'm here for any help that anyone can provide.

My mother was diagnosed with Alzheimer's In February of 2023. I had her move in with me a month earlier (January 2023) in order to help with other health issues she was experiencing from her untreated diabetes.

I was her caregiver for the better part of 2 years and during that time she never helped me with anything around the house or anything regarding her care. Everything was left up to me, I cooked her three meals a day and brought them to her. I always took her dishes away and washed them. At first I thought maybe she wasn't comfortable with living with me so she felt awkward. However, as months went on nothing changed In regards to this and we also had to undergo weekly wound care for diabetic ulcers she had on both of her legs which were terrible and if we weren't able to get them under control amputation was a real possibility. She never helped with those or took any interest in communicating with the medical staff or learning how we could fix this issue.

I tried to talk to her about this on multiple occasions and it was met with frustration on her part along with a statement such as “what did you want me to do”...?

During this time I had to get her items out of her home as we could not afford two separate living situations. She never helped me at all (no exaggeration) when I would take her there and even ask for her help. With my mother It's always been easier to avoid conflict and the bottom line is I had to get the task done as I had a deadline so it was just easier to move on and finish the job.

Last fall her needs eventually exceeded my abilities and as a result I had to put her into a nursing home. For nearly the last 2 months that we lived together I would be on my knees crying my eyes out begging her to help me to take care of her in any way shape or form so we wouldn't have to consider a nursing home almost daily. This absolutely destroyed me, many times she would tell me she was going to but then nothing ever changed even when I would go to her with absolute kindness and try to help her through tasks.

The most confusing part for me was most of the time my crying and begging (literally on my hands and knees) was met with no emotion. The other times she would say okay I'm going to help however, there was a annoyed undertone to her disposition.

The last thing I ever wanted was to put her into a nursing home and I feel guilty about it every single time I think of it.

Is this normal behavior for someone with Alzheimer's to completely withdraw and have no desire to help with even small tasks such as making a sandwich for themselves?

I have read multiple articles regarding apathy and the lack of emotion.

2. Have other people experienced this?

I never want to think she just gave up and I'm so confused. I don't know how I should feel about this. She is my hero and the only parent I've ever had and it's so hard to see her at the weakest point of her life. I keep telling myself that she would have helped me If she could to try to make sense of it all.

I don't know what answers I would like to hear, maybe I just hope that there's somebody out there that can relate because I feel so alone.

Thank you once again for reading this.

PlentyQuiet · March 26

Yes it's normal, and you are not alone. Also caregiving is not a one person job as you discovered. Having to do everything for someone else is just too hard. And with the diabetic foot ulcers being a complex medical addition to your load could easily be too much.

Placement is okay, you are still going to oversee her care and needs but you now have a team of people to help. This is the right choice. You did the right thing

mandajean · March 26

Oh gosh Im so sorry….Its normal and Im living in basically the same situation. Except Mom has been with with about 8 months. She wont do anything I literally am the maid, caregiver. I have never felt so alone as I do in this situation. I have family and I even have a sister (who loves out of state) but she refuses to help at all even in a respite situation.

Mom is blank most of the time unless she is mad at me or laughing at something on TV. She lacks any sort of emotions except anger and frustration. I do feel like sometimes she has given up. But my Mom is in probably 3 years into this. It took forever to get a diagnosis even though I kept telling the Dr it was ALZ, no one wanted to listen. She isn't diabetic but does have numerous heart conditions.

Every once in a while she will wash the dish she was eating from, but she washes it with the Kleenex just blew her nose on. So I still have to go back and redo it. But basically she refuses to help herself in any way. Taking meds are difficult.

You have to do what is right for YOU. She is being taken care of in the nursing home. Its hard to see them in there I know as we have had to do it twice after hospital stays.

cdgbdr · March 26

I'm sorry that this is so distressing for you. I believe your mom would have done something to help had she been able to. My husband was diagnosed last year but showed signs years before. He hasn't been able to accomplish much of anything for years. This is mot your fault! You have been, and are doing your best.

squeez · March 27

I want to thank everybody for not only reading my post, but also responding. While writing this last night I feel like I was able to just slice my chest open and let so much of the pressure and emotion out. I can't remember the last time I cried that hard. I only wish I reach out to this community earlier.

@PlentyQuiet

Thank you so much the insight and the comforting words. My mother went into a diabetic coma for 3 days In her mid-50s. She had to learn how to walk/talk again, recovery took such a long time. Watching her go through another situation that was related to diabetes was overwhelming. Thank you for acknowledging how difficult that is.

@mandajean

It's amazing similar our situations are. I also have a sister who lives out of state and she plays absolutely no role in this process. She has only suggested That I bring my mother to her. On the other side of that, my mother made me promise that I would not take her to my sisters. They do not get along (she did something rotten years ago, far too much to go over here) so I had no choice but to take care of my mother. People have helped me here in less than 24 hours, I'd like to share something that somewhat helped/worked for us.

My mother has always been terrible with hydration. She would get so weak from being dehydrated (constant UTIs) that she would fall about once a month and we would be in the emergency room. When she was provided fluids via IV I was able to communicate with her so much easier while fully hydrated. Are you able to get her reasonably hydrated with water or other means such as supplements that can be added to water that contain electrolytes?

Eventually I became so desperate I contacted the department on aging In my state and after many phone calls and eventually a 4 month wait for a home interview/assessment I was able to get some help from the state. I was allotted 7 hours a day 5 days a week. I used this time to take her to an adult daycare program so I could go do gig work (food delivery) to try to support us. I was only able to maintain this for a short period of time as it was difficult to get her functional each day by myself. I would wake her up at 6:00 a.m. to start the day and we would be doing good If we got out of the house by 9:00 a.m. What I'm getting at is during that time it helped me and gave me some form of a break which I looked forward to each day. Working at a breakneck pace to try to make hardly anything during those 7 hours was far easier than doing the work back home. If you have an opportunity to get away even a short period of time on some sort of schedule, it may help you to get through your day.

Back to the hydration question while my mother was in adult daycare program they were able to coach her into drinking two bottles of water during those 7 hours (1 liter). While at home with me I would have to set an alarm on my phone and every 20 minutes encourage her to have a sip of water with me. Most times I'm convinced she was just lifting the bottle to her lips and not even drinking. It was a red letter day when I was able to get her to drink two bottles of water for me throughout an entire day. Maybe if you have an opportunity for someone outside of you or family that she doesn't know but will correspond with, they can help with hydration? That is of course if that is an issue for you. From what I've seen throughout this process and visiting the nursing home and speaking with the staff, hydration is one of the largest hurdles they experience.

I know I held on longer than I should have and as a result it destroyed me financially. It was an impossible choice for me to make to put her into a home. And I wish I could tell you that it's gotten easier with time for me, but it hasn't. However, it was the right thing to do. I want to thank you for reassuring me that I made the right choice.

@cdgbdr

I am so sorry about your husband. I want to thank you for sharing and for the kind supportive words. You may never know how much your comment means to me.

There goes my hero ..... 😢

Comments

Commonly Used Abbreviations

Community Guidelines

Categories