I feel out of my depth

TerryA.

My husband was diagnosed in November 2021 with mid stage dementia.  I had to retire in April in order to take care of him full time, he was no longer able to be left alone for even a few hours a day and I can't afford even part time help. I sometimes feel angry that I had to do that, then I feel guilty as he is the love of my life and we have been together for nearly 50 years.     He has shown signs of  delusions. Just yesterday he told me there was someone in our home trying to "fix the computer" and pointed to the microwave.  He seemed very upset that my siblings were visiting to go through my fathers effects and I am not sure if there was connection there.  He asks what day is it, multiple times a day, often is confused if it morning or evening.  He gets very upset because he feels there is something wrong but can't figure what it is.  He feels he should be doing something but gets angry with me if I don't know what it is he should be doing.  I have tried to get him interested in some type of crafting, he's not interested.  I may suggest we maybe take a day trip somewhere and he refuses then complains that he tired being "stuck in the house all the time".  I just am not sure if what I am doing is correct.  I was in health care office support in one way or another for over 50 years but this has me feeling like I am in over my head.  I can't afford to put him in an AL or MC at this time, maybe never.   Sorry to vent.  My siblings are willing to help somewhat but they have their lives to lead and I don't want to burden them.  Thank you for letting me get this off my chest.

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M1

Welcome Terry, this forum will definitely help. Seconding everything Victoria said about seeing a CELA, you can look up by location at nelf.org.

You should also talk to his doc about the delusions, there are medications like Seroquel that can help once other things like UTI are ruled out.

He probably doesn't have the executive function to do crafting projects, etc. Apathy is part of the disease. Have you investigated any day programs that might be nearby? Another thought, though covid risk is still there.

Good luck, none of this is easy and we all feel out of our depth in dealing with what the disease throws our way.

Ed1937

Hi Terry. Welcome. Sorry you're dealing with this. One thing that wasn't mentioned is that a CELA (certified elder law attorney) can protect many of your assets. Even if you don't think you have enough to protect, you will probably be surprised. Do you have life insurance policies? Who owns them? Who is the beneficiary? What is the cash value? How are bank accounts or other assets titled? Do you both have a car? Who owns them? These are just a few of the questions you will be asked, and the attorney can advise on how to fix any problem with it. Many attorneys will give you the initial visit free of charge, and you will come away from the meeting with an understanding of what can be done for you. It's well worth your time and money.

We have people here who have been wherever you are in the progression of this disease, and they are willing to share and help you.

Chammer

For the "something to do" maybe keep a basket of towels unfolded out of sight and when he says he should be doing something say "absolutely! I need you to fold these towels!"  If he is able to fold them, put them away (unfold and leave out of sight for the next time) Not sure if that was ever a task he did or considered doing, but it might help re-direct his attention for a short period of time.

TerryA.

Thank you so much for the advise.  I have been dealing with my father's recent death as well and taking care of all of the legal issues related,  as well as the death of both of my step parents within the last year.  Been a rough couple of years.    I appreciate the advise to seek legal council and will get on that as soon as I can.  I have actually spoken to my son and siblings about this very thing.

TerryA.

Thank you so much.  I will contact an attorney as soon as I can.  I have not checked into day care but that is now on my list of resources to check out.  The problem I have is that I made too much last year to qualify for VA benefits until after the first of the year and I have to many assets to qualify for state aid.  I do know I know I need to do something, soon.  His mother suffered from this for over 10 years before her passing. Thank you again for the support.

TerryA.

Thank you so much.  I have not contacted an attorney yet but will be soon.  I have been dealing with my father's estate and legal issues since April, on top of taking care of DH.  We don't have may assets but they are all in my name except his pickup.  I am so grateful I found this forum, I have been feeling a bit alone in this.  It is good to know I am supported by others going through the same things.  I appreciate any wisdom I can get.

TerryA.

Thank you I will try that.  I have been able to get him to take the dog for a walk but that is about it.