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As a past caregiver for my wife of 52 years, I welcome you to the forum and can certainly empathize with you in your caregiving role. Yes, there a many on this site who are, or have been caregivers to their spouse at home. What your husband needs now, maybe more than ever, is your ongoing love, understanding and commitment. He being the love of your life, does not sound corny to me.

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After reading your profile, I first have to say that you may need to change neurologists, as you say your husband's doesn't want to prescribe him any medication "yet" for his difficult behavior, yet wants you both to go to some communication study. Really??? And you don't even know how you would get him there with his behavior?
You're going to have to put your foot down, and be the advocate that your husband needs right now. There are several different medications available that should be able to help with his behavior and make your life a little bit easier.

And yes, I cared for my husband for many, many years even before his diagnosis in 2018 of vascular dementia. He too showed symptoms of it at least a year prior to his diagnosis. Vascular dementia is the most aggressive of all the dementias, with a life expectancy of only 5 years. I kept him at home the entire time, and he ended up completely bedridden for the last 22 months of his life. He died Sept. 14th 2020, and he too was the love of my life. It was both our 2nd marriages, so we only had 26 years under our belt when he died, but I'm grateful for the time we had together, even though a lot of it was hard as he had a massive stroke 1 1/2 years after we got married.
The most important thing I learned in my caregiving journey was to make sure that I was taking care of myself as well, as it is all too common for the caregiver to lose themselves in the day in and day out of caregiving, so please make sure that you're getting away on a regular basis to do things that you enjoy. Even if it's just for a few hours, it will help keep you more positive and give you strength for the journey.
Caregiving is the hardest thing you will ever do, so it's important to take care of you as well, along with bringing in some outside help when needed, and not being afraid to ask for help from family and friends when you need it as well. And if things get to be just to much for you to handle at home,(as we're all only human)then you must give yourself permission to say it's ok if I have to place my beloved husband in the appropriate facility, where he will be looked after 24/7 and kept safe.
I certainly feel for you, but know you're not in this alone. We're here for you at this forum, and I would recommend you Googling to see if there is a local support group in your area for you to get involved with as well. Most are still meeting on Zoom now anyway because of Covid. I've belonged to one for the last 3 years, and I can tell you honestly that they saved my life.
Also know that yes you will lose your temper with your husband at times, and might even want to kill him at times, but that too shall pass. Those feelings are all normal, and nothing to feel guilty about. You are doing the best you can, and you must remember that your husband's brain is now broken and it will never get better. But he is still in there. You will occasionally see glimpses of the man you fell in love with all those many years ago, so try to enjoy whatever time you have left with him, and don't beat yourself up, when you feel you've fallen short. You're doing the very best you can. God bless you and keep you.
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Silversenior Jun 2021
Thank you for your thoughtful and helpful response.
he has been locking himself in the spare bedroom for part of the day. He will clear somewhat in the late afternoon
Today I called the emergency number at Banner Alzheimer’s center and was connected with a nurse practice right that was wonderful. Finally she ordered some medication that will hopefully help. Now the trick is to get him out of the room.
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My Husband, also the love of my life, showed symptoms long before an official diagnosis. I noticed little things that concerned me. He never talked about it before or after diagnosis.
I have often said that the Alzheimer's Association should take the Puzzle Piece that Autism uses as their symbol and adapt that in purple. It is often not until you take a step back and start putting what are seemingly unrelated, disjointed incidents that you see a picture emerge.
From your description of what your husband is doing and your conversations with the doctor I would change doctors. To have your husband have the anger, anxiety and have to deal with that does him a disservice as well as you. AND if there is the possibility that he would unintentionally harm you or himself that would be a greater tragedy.
Also has he been properly diagnosed with the proper dementia?

I have to ask...just because it is me...Is your husband a Veteran? If so depending on where and when he served he may be able to get a help from the VA. It could be a little or a LOT.
And even more important for you recent changes now allow a spouse to be paid for caring for the Veteran.

It was 12 years for us.
I was able to keep him home for a variety of reasons.
I purchased a Handicap accessible house.
I had help from some great Support Groups.
I had help from the VA.
He was on Hospice for the last 3 years of his life.
AND...he was always compliant, never violent. He was non verbal for about the last 6 years with very minimal words, no sentences though.

I do hope you have a good support system you will need it.
And if it becomes a matter of safety having to place him is not a failure on your part. the main goal is to keep you safe and keep him safe.
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