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?

 

[SMBeach]

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.

I really feel for you. My dad (in a care home 500 miles away with me only visiting once or twice a year), cared for my mum when she had cancer. It came as a shock and she was just 67 when she died. Dad cared for her round the clock, including in the hospice, where he slept by her side night after night for 2 weeks. He went from that to being entirely alone. His son living in the Philippines and me 500 miles away. He became extremely lonely which didn’t help his mental health and he was a very creative person with lots of ambition so it was especially hard on him. He was developing dementia at the same time and nobody was reporting concern as we weren’t visiting enough to notice. Dad became increasingly depressed not just with the loneliness but was aware his mind and people around him (neighbours) were all acting weird. It was incredibly sad and once I became increasingly aware things weren’t right with dad, I’d when he started to get help. I’m in my late 50’s and I work self employed but my children are all at ages where they are off out doing their own things, going on their own holidays etc and I’m just on my own on my days off. I feel lonely with all that even though they still live here and I have 2 dogs. So I can imagine if I was going through what you are going through I’d not be in a hood place. I do empathise with you.

I do think it’s good to go out a walk each day. But I have dogs to do that with. I think it would be good for you to join in any activities at the care home where you can to maybe get to know other families of residents. Or try find some social groups. You can search online for coffee groups. Walking groups. Knit and natter groups. I think this needs to be a tune for you to find new friends. There are plenty people feeling loneliness and I think it’s important to find some social circles.

 

[Kevinl]

Welcome from me too. K