Half the time I do spend crying is due to regret. I spent 17 months taking care of my ailing mom. For the first 6 months it was just neuropathy (due to CIDP) and loss of motor control with the occasional bowl movement cleanup. From there it only got worse, her disease progressed so she had dementia as well, which made her aggressive. Her pain increased as time went on and just became unbearable for her.
I moved 2 states over to be with her and took care of her full time. I wasn't even working, just going to school. I told her "you are my job, I will take you to movies and do whatever so you want be alone and depressed." And that is what I did every day for 14 months.
In the last 3 months especially I lost my temper multiple times: Like yanking my arm away to avoid her touch when picking her up - I dislike human contact when I am stressed. Or telling her to not feel sorry for herself. Not comforting more and when she said "take me to the hospital I am dying" when she had been on hospice for months. "Yes, I know mom, there is nothing they can do there we don't already have here," I said rather indifferently.
"Manhandling" her at least twice when she didn't tell me she needed to go to the bathroom until after I lifted her and sat her down.
And other things. I have been irreligious for some time but I so badly want there to be an afterlife where I can apologize to her. Does feelings of guilt get better with time? Has anyone been a caregiver to someone in extreme pain (just all encompassing) with dementia?
We are all human, and we all have our breaking points, so please don't beat yourself up over what you did or didn't do. You did the very best you could and that is all any of us can do.
Your mom knew how much you loved her and that you did a great job caring for her, so rest in the knowledge of that.
Don't waste your time with the should haves, could haves and would haves.
YOU DID YOUR VERY BEST! Period. End of sentence.
So be kind to yourself now and take this time to rest and take care of yourself, and may the Good Lord give you peace and comfort in the days, weeks and months ahead.
You obviously loved your mom very much, just as I dearly loved my dad, but because we’re weak and frail humans, we sometimes lost our temper and messed up. I don’t think we can let the mistakes be more important than the love we expressed.
Please accept my condolences for the loss of your beloved mother. Thinking of you.
PS I took my dad to the movies too! The last one (pre-Covid) was Little Women, which he really enjoyed.
As far as I know the last "Perfect" person was nailed to a cross a while back.
You have no reason to feel "guilty" for what would be normal emotions.
You still cared for your mom.
You did for your mom, she cared for you. And I bet there were times when she lost her temper, said what might have been unkind words.
You do not have to wait for an afterlife to talk to her. You do have to be open and listen not just with your ears but your heart and mind. She is there. I still hear my mom and she has been dead almost 60 years, it is more difficult to hear my dad.
Seek a therapist. A few sessions can do wonders.
A Bereavement Support Group. Hospice will have one that you can go to, usually offered for the next year or so.
And most important..
Be kind to yourself. What you remember is not what your mom remembered about your care of her.
I found some overall comfort in keeping a journal of "letters to D." after his death. There I communicated with him as though he was still alive, and told him thing of interest. It also gave me an opportunity to explain some of my action, to apologize for any failing.
You will need to come to some peace with your human limitations, but I think a few sessions with a counselor may help you. I surely do wish you the best.
Secondly you where in burnout from 24/7 care and didn't realize it .
Long term caregiving, changes your brain chemistry. Long term caregiving gives you PTSD. You are on constant alert, your brain never rest or sleep. The human brain can't function like that.
You have nothing to feel guilty about because your brain was not functioning enough to even think right, about things like getting help
That's why we are here to help people, to educate people, so this doesn't happen. So you where also uneducated on what to do. We hope that people come to us before this happens.
My mom is in bad pain now. From a degenerative back. Thankfully I found this form 6 months ago . I can't only be around someone in pain for so long. Some people can handle it, some can't. I can't! And I am trying to be around mom as little as I can.
You are also a victim of society expectations that we are supposed to take care of are parents, no matter if it kills us doing it. And if we don't we are horrible people. And we are groomed from a young age from society, from are parents, family, neighbors.
First you need to get therapy.
Welcome to this forum. I'm gonna check back latter , if I think of More.
🙏😔
Caring for someone with cognitive challenges is incredibly challenging, and it is normal to feel frustrated and exhausted. These feelings are a testament to how much you cared and how hard you tried to provide the best care possible.
None of us are perfect, and caregiving, especially under the stress of dementia, is a tough job. It is important to remember that making mistakes does not diminish the love and dedication you had for your mom.
Be gentle with yourself. Guilt is a natural response, but it is important to recognize that you did the best you could under very difficult circumstances. Everyone has moments of struggle, and acknowledging them is a sign of your compassion and self-awareness.
Think about the many ways you showed your love and care for your mom. Your commitment to her well-being, even through difficult times, speaks volumes about your dedication and heart.
Consider speaking with a counselor or therapist who can help you work through these feelings of guilt. Sometimes talking to a professional can offer perspective and help you find peace.
If you need someone to talk to or if there’s anything specific I can do to support you during this time, please let me know. Sometimes, just having someone to listen can make a big difference.
best wishes and again sorry for your loss.
Anyone who does this job 24/7 with no caregiver help for respite will no longer be in their right mind. You would be on verge of cracking up or nervous breakdown. Hugs 🤗
You have done everything you possibly could that most would not have. I commend you.
Please do not feel guilty. She knew you loved her and what I read what you've done for her, I can see you loved her.
I'm so sorry for your loss. Your heart will heal. Don't beat yourself up. You're human.
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