Follow
Share

My husband is 66 and was diagnosed 5 years ago. I have been his only caregiver up till now. 4 weeks ago he was able to get up walk, eat, and sometimes could finish dressing with help. He got agitated one night and hit me and I had to call 911 to take him to the hospital.
He stayed 2 weeks then came home for a weekend. He was like a different man. Very unsteady, had to have help walking and stated falling. He went back to the hospital and now in skilled NH.
Crying a lot.

This question has been closed for answers. Ask a New Question.
Find Care & Housing
I'm so sorry for your sadness. But why do you feel guilty? Guilt is felt when a person thinks they did something wrong that they regret, or when they think they should have done something they didn't do. As a caregiver to someone with dementia, almost all of us at one time feel some guilt because we feel helpless meeting the needs of our LO. Guilt is such a wasted emotion. You have done nothing wrong to warrant a guilty feeling. I believe AD affects the caregiver more than the patient. There is no owner's manual, no playbook for the caregiver. You make the decisions that you feel are correct at the time and you don't look back. Crying is necessary. It's the outward expression of your sadness and your love for your husband. Don't be afraid to talk to family and trusted friends. They can offer you support. I wish you peace.
Helpful Answer (1)
Report

I am so sorry. This is very early onset of dementia, then, for your husband? It does look like he will need permanent placement now for his own and your protection. The awful thing with the dementias is that we lose the people we love themselves while there is still a form of who they were walking, still with some memories. Please ask now for permanent placement for him.
As to guilt. It's my specialty. I am going to ask you to define guilt. What is a person who feels guilty? Is it not an evil felon who did evil for pure pleasure and with malice aforethought and now, realizing how wicked he or she is, comes begging to be forgiven?
That isn't you, is it?
Guilt infers that there is purposeful wickedness. That there is a CHOICE to stop being wicked.
What you feel is GRIEF. Still a g-word. Still five letters. But entirely different. Grief knows that there is no answer. Grief knows that no matter how good our intentions we cannot help some things. Grief is the despair of knowing we are helpless to help someone who is suffering. That we must stand and watch the loss after loss. That our human limitations will not allow us to wave a god-like wand and change it all.
You are suffering from grief. And is this not worth mourning? Is this not worth your tears? Please allow yourself you mourn so that those moments you are NOT mourning you can pick yourself up, visit you hubby, do as much as you can for him with visits and love.
You didn't do this. You can't change it. But you must allow yourself moments when you curl into a fetal ball of despair. You won't stay there. Tears will help wash out the pain so you can stand again, and move on.
My heart so goes out to you. This is everyone's worst fear for themselves, for those they love. You are having to live it. But you didn't DO it and you can't FIX it. You can only look for those moments of grace and acceptance and hang on to them when they come.
Helpful Answer (1)
Report

Any time my husband(who had vascular dementia among other issues) had to go to the hospital, he came home worse than when he went in. Always much weaker, more unsteady on his feet and more confused. Because my husband was a fall risk, they would just let him lay in the bed, which of course didn't help him at all and so he just got weaker and weaker, and the last time he came home,(Dec. 2018) he was completely bedridden, and remained so until his death 12 days ago.

I know this is hard for you, but it really sounds like he is where he needs to be right now. You did a great job in caring for him the last 5 years, so you have nothing to feel guilty for. You probably already know that you wouldn't have been able to care for him much longer in the home anyway, so quit beating yourself up over the decision to place him where he will be safe and get the help he needs.

And it's ok to cry. You are grieving the life and man you once knew. I just hope and pray in time you will have peace with your decision and in your life. God bless you.
Helpful Answer (1)
Report

It is not a question of whether or not your feelings are normal. Your feelings are valid.

Many people have a hard time identifying their feelings and describe them as guilt. But guilt in my mind only applies if you did something wrong.

For 5 years you have provided care to the best and extent of your ability. Nothing there to feel guilty about.

Your husband’s care need now exceed your capacity to meet them. I saw a post by another contributor to this site, I will paraphrase it. If your car needs an oil change, with the correct tools you can learn to do it at home, if needs an engine rebuild, you would need specialized tools and training, it is not really effective to do in your own.

Your husband’s needs specialized care, from trained people.

Now I said earlier your feelings are valid, then went in to say you should not feel guilty. Think of all the other emotions you can use to describe your feelings. Are you lonely, sad, worried, upset, tired, anxious? Are you relieved that you can take time for yourself? Do you worry about finances?

Ask the social worker where dh is living if they can help you find a support group or therapy.
Helpful Answer (0)
Report

Guilt and shame are the devil, focus on all the love and caring you did, it really really really Is ok to let go of being the 24/7 caregiver.

bluntly put this is normal, it’s not wrong to take care of yourself after giving as much as you did, you will feel lost, aloneness, angry, don’t allow depression to set in.

once you get A little of your balance back dream, figure out what you want to do with the rest of your life.

my mother’s mother after her lost of caring for my grandfather took painting classes, then she took trips back to her Indian tribe and taught painting/art classes, she would do fairs and sold her artwork as well it was always one of her personal dreams to be an artist. When she got cancer (that’s what killed her) one of the things she told me and I will never forget is “without pain and sorrow you really didn’t learn how to love”
Helpful Answer (0)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter