New to forum and dementia

DonnaAnn · April 23

Hello everyone
Three months ago my beloved father who has Parkinsons, had a grand mall seizure. The seizure triggered a massive and frighteningly fast decline including rapid dementia. I had been caring for him at home (my husband and I live upstairs from him) for several years as he was unable to do certain ADLs and he did have some cognitive decline bit nothing like this.
In three months he has declined on an almost weekly basis to the point where he doesn't know who we are anymore, he is completely bedbound and almost non verbal. After the seizure he was transferrered from the hospital to a nursing home ( thankfully a wonderful one near our home).
It was awful as my brother and I had to invoke power of attorney and take over all his finances. etc. We were already doing most but this felt like we were ripping his life away from him. He fought us on staying in the nursing home when he had momets of cognizance between almost constant hallucinations and delusions. I have cared for other ill family members including home hospice ( I am an early retired nurse due to a heart condition), but never someone with dementia.
I have a deep faith in God and I am trying to navigate this. I also have as I mentioned, a heart condition that has gotten worse recently along with severe depression and anxiety. I have a loving husband and a wonderful brother and sister in law but we are all in a terrible storm right now. My brother has given up all faith in God and is on the verge of stopping all visits with our father as the stress is killing him, (he had a stroke two years ago), our spouses are worried about us constantly. We only visit dad 2 or 3 times a week but call everyday to check how he is.
This feels like such a shock, I have never seen a decline so fast and dont know how fast it will continue to progress like this. Has anyone experienced anything like this? He has lost 60 pounds in the last 3 months and continues to loose weight, he is bedbound and can barely say a few words at best and sleeps almost all day and night. He is a wonderful father, turning 85 in two weeks, who we love so much.
Thank you and bless you for listening.

harshedbuzz · April 23

@DonnaAnn

Hi and welcome. I am sorry for your reason to be here, but pleased you found this place.

It sounds like the you gave your father the gift of remaining in his own home long after her was truly independent in his ADLs; without you a facility would have been necessary sooner.

The weight loss alone is ominous. That must be devastating to watch for both you and your brother even if your coping mechanisms are vastly different. I trust as a nurse that you are seeing to your own wellbeing. This is hugely difficult stuff.

Have you brought hospice on board for your dad? Even if you don't move him to a hospice house, having an additional layer of carers might benefit you both.

HB

M1 · April 23

I second the hospice recommendation. typically you don't need a doctor's order and can call yourself for an evaluation. The nursing home will probably welcome their presence too, as it's extra hands to help.

It does sound like you have done everything you can, and now is the time to recognize that he is approaching the end of his natural life. Hospice can help make his last days as comfortable as possible and ease the strain on all of you,. Keep us posted how it goes.

DonnaAnn · April 23

https://alzconnected.org/discussion/comment/206805#Comment_206805

Thank you so much for your kind words. We are going in today and I will speak to the staff about hospice. I am so grateful for the care he is receiving at this home, it is run by Carmelite nuns and they are wonderful. I will see if they can maybe provide hospice care in house.

I do need to look after myself which I know I am neglecting. I will try my best.

DonnaAnn · April 23

Thank you and God bless you.

Quilting brings calm · April 23

I know it’s awful to have reached this stage. Since both you and your brother are struggling, I suggest you do this if your spouses will help:

only one of the four of you call on a given day. Set up a schedule for who does it on what day.
Only one of you visit every day or every other day. Try to limit this to once a week per person - that would be a total of 4 times a week for the group
Please read, binge watch tv, take walks, do a hobby to just get some normalcy into your lives to cut down on the stress.

Anonymousjpl123 · April 24

@DonnaAnn that sounds enormously stressful and I’m glad that it least it seems your family is pulling together and mostly supporting one another. I cannot imagine what your dad and you are going through.

The only thing I can offer aside from what others have already said is that sometimes it helps me to remember this is a part of life. Aging, illness, it’s part of our journey. It can be that no one is doing anything wrong this phase is just really stressful and draining - on your dad, you, your brother, etc. but it is part of life. I hope you find some time for you, and glad you have. It lost your faith.

DonnaAnn · April 24

https://alzconnected.org/discussion/comment/206815#Comment_206815

Thank you for your thoughtful suggestions, we are definetly working on a better schedule to reduce stress

DonnaAnn · April 24

Thank you for your kindness, we are trying our best to keep him safe and comfortable and keep ourselves well. It helps to have support and even kind comments can help a lot

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