I am his caregiver. I feel sad and frustrated.

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Feeling sad is completely understandable & normal.

Feeling frustrated, that there is not more within your own power to change or do, would also be completely understandable & normal.

I would think these may be part of the four tasks of grief/mourning.

Task I: To accept the reality of the loss.
Task II: To process the pain of grief.

Helpful Answer (8)
Reply to Beatty
Naneailan Mar 28, 2024
Thank you. God Bless
I had a friend in the hospital, could not open her eyes, and laid there for weeks. I visited her and I knew she loved to hear the bible verses and hymns - so I am not the best at singing - would read a story or verses out of the bible and sing to her the songs I felt I could do my best at. I felt better and I feel she could hear my voice. I told her I loved her and that we all loved her. She passed away about three weeks. Just know that doctors state that even though people are not awake, they can still hear you! Tell your husband that you love him and remind him of all the wonderful things you did together - walks, dinners, movies, holding hands etc. Prayers for you!
Helpful Answer (7)
Reply to Ohwow323

What is frustrating you the most?

If I were in your situation I'd transition him into LTC, which is covered by Medicaid (and when he qualifies financially as well). He'd get all the help he needs, you'd get your life back and you can visit him as often as you'd like.

I'm so sorry for these circumstances. You are in good company here...
Helpful Answer (6)
Reply to Geaton777

Of course you're sad, you're losing your husband and seem to be overwhelmed with his care.
Do you have any in home help to assist you? If not, you may have to think about placing him in the appropriate facility, where you can get back to just being his loving wife and advocate, and not his burned out caregiver.
And if money is an issue, you will have to apply for Medicaid for him.
You can call your local Area Agency on Aging, and Senior Services to see what help might be available, and if your husband is a veteran, call the VA, as they will have some options as well.

My late husband after having a massive stroke at the age of 48, later developed vascular dementia and ended up completely bedridden in our living room and under hospice care for the last 22 months of his life.
I at first had my oldest grandson here to help me with him and later had to hire an aide to come help me in the mornings.
It was very hard, but I'm grateful that I was able to keep him at home.
But not everyone is able to, and it comes to a point where you have to do not only what is best for your husband but for yourself as well, as you matter too in this equation.
I wish you the very best as you take this journey with your husband.
Helpful Answer (6)
Reply to funkygrandma59

You say he can no longer walk or talk.
Do you know if he understands you when YOU speak to him?
Can you tell us his age, and yours, and what assistance you have in caring for a bedridden hubby?

Can you tell us what your current frustration is?
Is the care itself too much?
Do you feel you are approaching a time when hubby should be in care so you can return to being his wife and not his caregiver?
Do you have inadequate help?

I cannot tell exactly what you might be asking us.
I sure am sorry you are dealing with this.
Helpful Answer (5)
Reply to AlvaDeer
Naneailan Mar 23, 2024
He is 85. I am 75. the care is fine ..I just wonder if there is more I could be doing. Tks for your response.
I understand your sadness and frustration. My situation is very similar. A blood clot at the base of the brain left my husband unable to walk, talk, or eat solid foods at the age of 53. This happened 9 years ago! And, since none of the stress factors exist in his life anymore, he is ironically, remarkably healthy.
I have seen a very slow progression of his abilities.
I used to cry weekly, and beg in prayer for him to get better.
I don't cry as often now. It's just become our new way of life.
You might benefit from some talk therapy - with a licensed therapist, not just friends and family. Your friends and family Don't really understand, and they will feel compelled to simply give you positive confirmation and platitudes.

Also, don't give up on your husband. Continue to be there for him and show him love and talk to him just like you used to. The sad reality is, brain damage is irreversible. You can try and help his brain form a new neural network.
Watch TV together and talk about things you see. Play simple games, like those geared for children. For the first 5 years or so, all my husband wanted to watch was animated movies, with animal characters. Very simple, light hearted, and easy for his brain to digest. He's now into watching sports. I record shows, and stream a lot so he can watch the same thing over and over again.
He may live like this for a long time. You will need to adapt to this new way of life and make the best of it. Hugs to you <3
Helpful Answer (5)
Reply to CaringWifeAZ
Igloocar Mar 29, 2024
Unfortunately, her husband has frontal-temporal-lobe dementia, which is progressive, as well as having had a hemorrhagic stroke. I agree with suggesting to Naneailan that she get some counseling since her husband is past the time when much recovery from the stroke is likely, and deterioration is likely from the dementia. It is very difficult not to be able to help someone you love not only not to improve but to get worse.
Maybe just sit and hold his hand and do it often. That would be so comforting to someone in his condition, I think.
Helpful Answer (4)
Reply to Fawnby

At one point in my husband‘s recent decline, he was sleeping almost all of the time, and it felt lonelier than when he was away at his dialysis center. When he was actively dying, I continued with holding his hand, forehead kisses, hugs, etc and singing to him. I believe that people often can sense a loving presence whether they respond or not. As others have suggested, continue to sit with him for short periods, talk or read or sing or just quietly hold his hand. I happen to think it’s also OK to shed tears by his side. You may already be doing these things, and hopefully it brings you some comfort as well.
Helpful Answer (4)
Reply to MidwestOT

Iam frustrated becouse I see sleepin all the time ..I dont know how much he understand. I have an Aid and he is in Home Hospice since last March. I have my family around all the time helping. Also I have a Social Worker
Helpful Answer (2)
Reply to Naneailan
AlvaDeer Mar 23, 2024
Nan, I would discuss this with the social worker. You are the best judge about where this goes at this point. If you cannot continue to do this in home then I think you should not attempt to do so.
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Naneailan: Voice these concerns to your social worker.
Helpful Answer (1)
Reply to Llamalover47

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