Disabled spouse with early dementia accuses me of being mean, and is self centered. He does not understand that I am responsible for everything in our lives now. He can't communicate well due to brain damage done by brain cancer treatment, but makes his displeasure known.
"Daughter who cared for MIL, father, mother, and now husband. Thirty-plus years of putting others first. Husband has dementia and cognitive issues related to brain cancer treatment. He is very self centered and does not appreciate that I am doing everything since he is in a wheelchair, can't drive, can't make sense."
Knowing that things will never improve or the caregiving load lessen, can you consider transitioning him into LTC using Medicaid? You should consult with a Medicaid Planner for your state and/or an elder law/estate planning attorney who will give you accurate guidance on when and if he'd qualify and what you need to do to protect his ability to qualify.
You have done yeoman's work to say the least. Time for you to take care of you. Blessings!
It requires much patience from us their spouses. My husband eventually developed vascular dementia many years later, and soon after ended up completely bedridden in our living room until he died in 2020. I chose to care for him and keep him at home, even though at times it was more than difficult. It by far has been the most difficult thing I've ever done, yet I would do it all over again if I had to, for the man I loved.
That being said however, we all must do what is best for not only our loved one but for ourselves as well, so if that means that you just can't go on doing for him anymore, then it's time that you look into placing him in the appropriate facility.
I would also recommend looking in your area for a support group for caregivers. I've belonged to one for 4 years now locally, and I can tell you that they literally saved my life when I was at my wits end. It's so healthy to be able to share with others that are going through similar things as you and can really understand. Most went to Zoom during the worst of Covid, but our local one is finally starting back up in person on March 9th. along with having folks on Zoom as well.
I wish you the very best as you take this journey with your husband. Just don't forget that you matter as well.
Your choice of names probably says it all. (but is yet the tip of the iceberg)
I have said for a long time here and in meetings I attend..one word you need to keep in mind.
SAFETY.
If it is not safe for YOU to care for him at home you need to consider placing him in Memory Care of if Skilled Nursing is a possibility a placement there.
If when you say he makes his displeasure known if that in any form means physical contact you need to look for placement ASAP.
If it is not safe for HIM for you to care for him at home you need to consider placing him in Memory Care or Skilled Nursing.
From your name and what you have done I am going to take a wild guess. (wink, wink) and say you are exhausted and burnt out.
Have you thought of placing him for a short time for RESPITE? This would give you a break and him as well.
Is he a Veteran? If so the VA might be of help. Check with your local Veterans Assistance Commission they can help determine if he qualifies for services.
AND due to recent changes you can get paid to care for your spouse.
About the brain cancer treatment....is he in remission? Is he still getting treatment? If no to both of those he might qualify for Hospice, and there is a good possibility that he might qualify anyway with the diagnosis of dementia secondary to the cancer.
If he is on Hospice Medicare pays for about 1 week of Respite each year for a patient. Take advantage of that.
If he is not on Hospice I would call 1 or 2 and ask for him to be evaluated.
The help and support that you would get form Hospice is amazing not to mention the supplies and equipment that they provide.
One of the most important things for caregivers to remember and to do...TAKE CARE OF YOURSELF