responsibility and guilt

French

Sounds like a Jane Austen title (pride and prejudice, sense and sensibility).

This is what I feel the most, a tug of war between too much responsibility and guilt whenever I decide not to take on a responsibility.

He walks around the room, I have a choice between keeping him busy or going to another room to isolate myself feeling guilty. More and more I choose the 2nd option et feel guilty.

Why? Because all this responsibility is too much. He is busy when I make sure he is busy. He's cared for if I take care of him or find somebody to take care of him. He's clean and well dressed if I manage showering and dressing well, he sees his friends and family if I maintain relationships... It's a second job for me. And the more it goes on, the more the responsibility (an the work) increases but the guilt doesn't decrease.

How I wish he had enjoyed himself at the memory care home... I could have stopped all this. 

Regularly he tells me that he is going to get an apartment, so that I will be at ease. I tell him yes, do it. But I know he won't do it, he is simply unable to do it and he forgot 5 minutes later. 

How much easier it would be for me! But who would take care of him? His 20 and 23 year old children? His 77 year old parents? His 42 year old sister who just had a baby by herself and never came to see him? His brother who just got divorced and only thinks about having a good time? His other brother who lives on the other side of France? His sons mother ? 

I don't know how to stop all this. I feel trapped. 

I admire those who say they will take care of their partner until the end. I can't wait to get out of there. But at the same time, I know that he still loves me and that he doesn't deserve to be abandoned.

 I promised myself to hold on this year 2021 and have a solution to be free at the end of the year, that's what helped me all this beginning of year, but now that the half of the year is coming, I begin to understand that this is not the last year and that I deluded myself. 

Thank you for reading me. I needed to explain this to somebody 

M1

I get it, French.  I love the idea of the Jane Austen title, that's perfect.  Perhaps rings a bell with Crime and Punishment, too?  A little Dostoevski thrown in?

Last week my partner threatened to kick me out of the house over the driving issue; today I discovered that she sneaked out in the truck while my son and I were visiting my daughter.  So now I am really hiding the keys and locking the gate, and waiting for the next blowup.  I'm sick of it; but I still care for her and can't abandon her.  So I do get how you feel.  I'm sure it is harder because you still have kids at home, at least I don't have that.

June45

The title of your topic says it all.  I get it.  I would love to be caregiver extraordinaire, but I am not.

abc123

Dear French,  I'm sorry for what you are going through. Is it possible that he won't be happy no matter what? I have not witnessed my LO showing signs of happiness in several years. I admire and respect your honesty. I hope things will work out so you can be happy without guilt.

vrt

You are heard! Experiencing the same thing with DH. There are so many spouses out there caring for our partners.  I am finally realizing I need help, so I am going for in home caregiving a couple of hours a week.  I will see how that works out.  Any advise?

French

I have 2 in home caregivers

I really didn’t manage well because I am the employer. I didn’t want to be the employer, but i was advised an association who find me somebody and explained me they will manage all the documents (with fees), I will just have to pay.

First I hired one caregiver for social life through this association. When I asked for an help for Shower and dressing I was answered she hasn’t been hired for that and the association doesn’t provide this kind of employees. I kept her, but with less hours and now she is not satisfied and begin to cheat on time. Unfortunately, here firing somebody is very complicated unless you can prove a fault or that you don’t need the person anymore. In any case you can fire somebody to hire somebody else just after.

So I hired directly a second one for activities of daily life. At the beginning as I was teleworking at home, I needed only one morning per week. The person I hired is perfect and my partner really appreciates her. Now I have to go to the office and I need more, but she isn’t available the other mornings and won’t be available the whole summer.

So today I wonder if I will hire a 3rd aid.... 4th in fact because I also have somebody coming for the cleaning.  I never thought I would become the boss of 4 people !

So the only advise I could give would be to be sure you anticipate that the situation will evolve and so the solution must have the ability to evolve.

Stuck in the middle

"Virtue and Punishment" would be a better title.

Suziesb

I always felt guilty in the caregiving role....like as soon as I got my mom in bed for the night I was relieved. The day was done. Until she called out again for me and I felt resentful over not having sleep. It's just so hard.  My kids said they saw what a toll it took on me.  

I actually got diagnosed with two autoimmune disorders while caregiving my mom with AD.

Responsibility and Guilty - you said it!  Like a big weight on the shoulders.  Every so often I would find myself saying "But I wouldn't have it any other way, I'm glad I'm doing the caregiving at home."   (I don't know if I believed this, but I was trying to be the good daughter.).  

ButterflyWings

French - I feel exactly the same way right now. This has always been hard, but now it seems impossible and endless. I know I have to get an attitude adjustment, at least to not feel "darned if I do, and darned if I don't". As you described, it feels like not doing enough no matter what. Either way I am falling short, not doing enough for DH and doing even less for me.

What a good point you made, that the solution must be flexible since dementia evolves constantly. I have not yet gotten the help I need and am dreading having to plan tasks for yet another person (employee) in order to get their help. I think I am just going to have to try and see how it goes. My work situation also has changed, like you are going back into the office more, I have a ton of responsibility in my new position and it is remote, but I will have to have DH be someone else's job even while in my presence, or this entire house of cards will crumble and we will have zero income, after he (and undiagnosed AD) took us to the brink of bankruptcy. 

I need to stop posting right now, as it isn't very uplifting to others, or to me. Can't sleep, so I came here. The only place where people truly understand. I just wanted to say, your words spoke how I feel lately. Maybe you can still have a plan by end of this year at least, and target your freedom for 2022. Like someone said, maybe he won't be happy regardless. So if YOU are happy with the MC, and you/he can afford it -- maybe that is your best next step toward freedom from this overwhelming responsibility and guilt.

Crushed

Stuck in the middle wrote:

"Virtue and Punishment" would be a better title.

I 'll go with "Pain and Suffering"

BogJ

I'm 78 and with no family around could not look after my DW. I found a local 'Memory Unit' that is lovely and the staff are terrific. Soon after being there she was Baker Acted and the Psych unit changed all her meds. She is now calmer and more accepting of the situation.

So feeling very guilty that "I gave up on her" I am now faced with: As she is calmer should I bring her home? Staff say that my visits are not traumatic simply because she forgets I was there 2 minutes later! She now has almost instantaneous memory loss. She is a "Walker/Talker" and into everything and without 24/7 care she could be dangerous to herself and/or others.

Watching dementia is like watching a butterfly. Just when you think you have answered some problems and know where things are going it flits off at 90deg and hits you from a different angle. So now the pain and guilt continues. 

Out home is deep in the FL Heartland and there are no local support groups. I just feel so dam desperate and devoid of human contact I'm worried about my own health and if it fails how will I look after her?

Stuck in the middle

We don't give up on them so much as we accept the reality that they need help.  When we place them, we face the reality that professionals can provide care better than we can.  I feel no more guilt at placing my mother and my son in institutions than I feel guilt that I don't do their dentistry.  When and if an institution can provide better care for my wife than I can, I will place her too.  Seeing that something is done is the same as personally doing it.

I received notice last night that the place my son lives is closing.  I am working on finding another place, the best I can find with the funds available.  I could move him into our home, and make three people miserable, but why should I?

M1

Geez Stuck.  Last thing you needed, I'm sure.  I like your dentistry analogy.