Hello - I’m new and just joined

[Katybr]

Hello, my name is Katy and have a wonderful husband of 47 years just admitted into a very nice nursing home. He has FTD and PPA - same as Bruce Willis if you’re not familiar. I feel so horrible, lonely, physically sick that I made this decision, but, Palliative Care/Hospice, doctors, etc. all said (a) I’m burned out (to a crisp) and (b) he’s totally nonverbal except every now and then, unsteady, Macular Degeneration (his whole family), Parkinson-like tremors (not Parkinson’s), no cognitive abilities - no memory of any kind, etc. I go every day for only an hour at lunch - he’s there 8 weeks now. I’m beyond sad. I am getting therapy and nothing helps. My boys are all a Coast away - West Coast. They’ve come in as frequently as $$$ will allow. I have zero family here anymore and 3 bff’s died in last 6 years. The ones you can count on forever and ever. I’ve had so much loss. I’m 70 and he’s 75. His mother is still living and is 100! Lives independently at another retirement community. She’s a total narcissist and I can’t stand her.
I’m trying to keep the ship afloat here, but, the cost is going to sink it, I’m afraid. I have an elder law attorney and financial advisor so I am covered on those bases for advice. I just have no friends left - at my age they’re either retiring and moving to Florida or near their grandkids or are dying of cancer, etc. I try to stay busy and remain positive - it’s not working. Any advice? I’ve read some posts and they are wonderful - that’s why I joined.

 

[Izzy]

Welcome to the forum @Katybr.

I’m so sorry to read about your situation. It is so terribly sad.

I hope being part of this forum gives you some much needed support and understanding.

 

[leny connery]

so sorry about your situation. is there and equivalent of Age UK in the US? carer support? Alzehimer nurse? Can you join a group of like people from which you can form a supportive friendship? it is not easy at our age to find and form new friends but a shared experience is a good basis to find one, maybe? good luck and God bless

 

[LynneMcV]

Welcome to Dementia Support Forum @Katybr, I am glad you have found us. I found that I felt much less isolated omce I joined here, and it helped tremendously. I am sure you will find the same.

 

[canary]

Hello @Katybr

Being a carer is a very isolating experience. It is very easy to become consumed by caring and then when they move into residential care there is this huge hole left in our life and we feel we have lost our purpose.

Is there anywhere near you where you can volunteer? In UK many organisations welcome volunteers - reading to young children in schools, sorting books in libraries, churches, working on wildlife reserves, in charity shops, knitting blankets and sweaters, looking after floral displays in town centres and villages; so many things. Are there schemes like that where you are? Joining in with other people doing something you enjoy which will benefit others may help to restore your sense of purpose and make new friends.

 

[Saralara]

Hello, my name is Katy and have a wonderful husband of 47 years just admitted into a very nice nursing home. He has FTD and PPA - same as Bruce Willis if you’re not familiar. I feel so horrible, lonely, physically sick that I made this decision, but, Palliative Care/Hospice, doctors, etc. all said (a) I’m burned out (to a crisp) and (b) he’s totally nonverbal except every now and then, unsteady, Macular Degeneration (his whole family), Parkinson-like tremors (not Parkinson’s), no cognitive abilities - no memory of any kind, etc. I go every day for only an hour at lunch - he’s there 8 weeks now. I’m beyond sad. I am getting therapy and nothing helps. My boys are all a Coast away - West Coast. They’ve come in as frequently as $$$ will allow. I have zero family here anymore and 3 bff’s died in last 6 years. The ones you can count on forever and ever. I’ve had so much loss. I’m 70 and he’s 75. His mother is still living and is 100! Lives independently at another retirement community. She’s a total narcissist and I can’t stand her.
I’m trying to keep the ship afloat here, but, the cost is going to sink it, I’m afraid. I have an elder law attorney and financial advisor so I am covered on those bases for advice. I just have no friends left - at my age they’re either retiring and moving to Florida or near their grandkids or are dying of cancer, etc. I try to stay busy and remain positive - it’s not working. Any advice? I’ve read some posts and they are wonderful - that’s why I joined.

@Katybr your situation sounds incredibly sad and I'm guessing that it feels like a very lonely place to be right now. My heart goes out to you.
I don't have any answers but there are many people here that are able to identify with the loss you feel.
I was wondering if you might be able to vary the times that you visit? It may just help to give you a chance to stop each day being the same, becoming a pattern of possible depression and allow you find a different routine for yourself?