I end up yelling at him. This whole dementia thing has brought out something in me I never knew existed and that’s anger. His dementia was caused by a stroke that was caused by diabetes that he never took care of. Always stubborn and pretty selfish and now I feel like he has not only ruined the rest of his life but also mine. It scares me that any love I’ve had for him is gone and anger has taken over. I’m not sure keeping him at home is the best option, though it doesn’t seem right to send him to a facility when he can basically take care of himself at this point. I need to figure out how to handle the sundowner’s that puts me over the edge. Also, he does not want to take his meds. He’s on many for a variety of reasons. I’ve found on the days he doesn’t take them, his thinking is much clearer. I feel like not pushing them anymore for two reasons. He seems better without out them and if he should die from not taking the meds it would be better than slowly dying and losing your mind from dementia. But then I feel guilty not pushing them. This has been a struggle for years. Hence, the stroke. I guess I’m just tired of doing it.
Frustration yes
You need to "think outside the box" and come up with clever ways to get around things. That will come. You are getting to know the "new him"
The struggle with the thought of keeping him at home or not is one we all deal with. My "line in the sand" was SAFETY. If it was not safe for ME to care for him I would have had to place him. If it was not safe for HIM for me to care for him I would have had to place him. You have to figure out where your "line in the sand" is. Deciding to place him is not a failure it is acknowledging that his care is more than you can handle.
Now to the Sundowning...
What are his triggers?
If it happens as the day winds down it could be changing light.
Replace bulbs with LED they are brighter.
Close blinds, drapes so he does not see reflections in the glass.
At the end of the day he is tired and it is getting more difficult for him to process things. Keep the end of the day low key. If needed get him to bed earlier.
I agree with you on the medications.
Does he have a POLST completed? This document will detail what life saving measures should be done. From CPR to intubation, nutrition and the extent of the intervention. If he does not have one completed I strongly suggest it. AND it is important to keep a copy with you at all times. And it should be in view in the house so that first responders will see it when they arrive.
If 911 is called and they do not have access to the form they will do what they have to do to save a life.
Please do not forget the other person you have to care for...yourself.
If caring for him places you in a position where your health and or safety are compromised please consider placing him.
(he may qualify for Hospice they would be of great help to you as well)
And remember also that not everyone is cut out to be a caregiver, and that just may be you. And that's ok. We're all created differently.
It does sound though like you need to hire some help to come in to help you as you are getting burned out, or start looking into having him placed into the appropriate facility, where you can get back to just being his wife and advocate and not his caregiver.
And please talk to your husbands doctor about his sundowning as there are medications to help with that. But you must make him take them or it will do him no good.
Your husband more than likely has vascular dementia which is very common after someone has had a stroke, and it is the most aggressive of all the dementias with a life expectancy of only 5 years. My late husband developed vascular dementia around 2017, and wasn't diagnosed until 2018. He died in 2020. I was grateful that he didn't have to suffer long like those with a lot of the other dementias.
Other than bringing in more help or placing him, I would say that you MUST start taking care of yourself and doing things that you enjoy. It can be something as simple as talking a walk outside, going to church, having lunch or supper with a friend or whatever floats your boat, because statistics show that 40% of caregivers caring for someone with dementia will die before the one they're caring for from the stress. So self care is of utmost importance!
That is the one thing I tried very hard to do while I was caring for my husband, as I know all too well how extremely stressful it was for me.
It was hands down the hardest thing I have ever done, but now looking back, I would do it all over again for the man I loved, as he deserved to be taken well taken care of.
That doesn't mean I did everything perfectly, far from it, but he knew that I loved him and was doing the very best I could for him. And that to this day brings me great peace.
So you must now do what is not only best for your husband but for you as well.
I wish you both the very best as you travel this very hard road together.
First of all, as an RN, I think that his diabetes has little to do with his dementia. It may have SOME sort of link depending on what type of dementia he has, but so far we really don't know why some get it and some do not. My guess is that it will likely come up genetic causes more than anything else. So you have to attempt to let go of that "he did this to himself and he did it to me". That isn't the truth.
Interestingly enough there was a time we tried to accuse people who go cancer of doing it to themselves, as well. For a period of time it would be that women who spoke out and were "hysterics" got it. That changed later to women who suppressed and DID NOT speak out got it. Truth is neither of those things is true.
I would discuss the issue of the medications with his doctor; I imagine you are his POA. I would then suggest either a grief group, a support group (if you can find either) or a Licensed Social Worker in private practice for counseling for a few sessions to give voice to your feelings.
You are grieving. It is easier in times of grief to feel anger. Grief feels impotent. Makes you feel helpless. And anger allow to steam to escape.
My heart goes out to you. Know that you aren't alone.
My husband and I have been married for 70 years and it’s very difficult to watch my him disintegrate right before my eyes. We’ve had a good life and have 2 daughters and 5 grandchildren.
Everyone has a lot of advice but unless you have gone through this or you’re in the process you have no clue. I’m 90 years old and hope and pray i’ll be around long enough to see him go peacefully. I feel so inadequate but every day is a new day and I keep trying.
With UTI's, they can mimic different aspects of dementia, and also cause unusual behaviors. Take hubby you his primary doctor for a UTI test. If the comes back positive, then antibiotics can be prescribed.
I remember when my Dad [in his 90's] had a UTI. For him, it was seeing ants on the wall and in his food. Once on antibiotics the ants slowly went away.
Leak 1 - he's sundowning. You'll have to deal with it by medicating, getting used to it, etc. That's a huge problem for you.
Leak 2 - he's noncompliant with his meds. That's a problem for him and a worse one for you because you're in charge of that and experiencing a moral dilemma over it.
Leak 3 - you feel guilty. Everybody feels guilty in a situation like this. It's a major burden.
Leak 4 - your anger. It could kill you. You don't like feeling that way.
Leak 5 - you are already thinking about a facility for him. That's where he could get competent care by professionals who don't resent him and won't yell at him, but you don't think it's right because....and now we're back to you and "he can basically take care of himself."
We've just taken a tour of the boat, you've seen the leaks, and the boat is sinking. Take a look at some facilities and don't think of it as "sending" him to a dungeon where he will be whipped with belts 6 times a day and starved to a skeleton. The food is actually pretty good at some memory care homes. You could even join him for meals when you aren't angry anymore.
Good luck to you in a difficult situation.