Is there anyone here caring for a spouse with Parkinsons?

[Reachingoutforhelp]

Hoping to connect. I am frankly at my wits end. Finding it very hard to cope with the day to day in this situation.

Living in a state where we have no family support. Thinking it's best he move back to the state he came from where he has family and friends. Right now everything is up to me and it's too much for me to deal with.

Most of our conversations are about him, his health issues, his appointments. I just can't take it anymore. He also is completely unromantic and most of the time very unappreciative. Hence I am taken for granted and basically feel like an unpaid employee.

We have been sleeping separately for a number of months now (I've lost count). Been married for 32 years. Haven't had intimacy of any kind in many years. I'm really deprived on many levels.

Apathy and lack of empathy (same thing I guess) seems to be more so than ever on his part now.

He's come up with some doozies which bring me closer to just reclaiming my life and freedom from this hell. Example. When I asked him does it matter if I'm still living with him, here's the answer he came up with "Unknown".

After 32 years of marriage AND my recently telling him how much I love him (he doesn't say it back) this is the best he can come up with as far as whether or not it matters if I am still with him?

I do SO MUCH for him, and am not getting enough in return. I could go on and on, but won't at this moment. I'd like to see if anyone else here can relate to this first.

Thank you for reading.

[Plantnut]

Hi Reaching out for HelpBoy do I relate to what you've described; I think we're pretty much in a similar place.

My husband has PSP(Progressive Supranuclear Palsey), an atypical Parkinson condition & I feel my life totally revolves around his needs.

I feel I don't exist anymore (useful quote I read on this site: 'I am no longer the main character in my own life story')

At last it looks like I should be getting some help- carers to get him up, shower & dress him each morning. All due to falling apart when asked by our doctor how I was managing!!? He sent a referral to the district nursing crisis response team & they've been amazing- getting fast-track funding for nursing/support care- when it will happen & how long it will last I have no idea, but at least it's something. It seems ironic that after coping completely alone(although I've had some moral support from children & neighbour), I had to be reduce to a gibbering wreck before it happened.

Apart from these practical considerations I think the complete lack of concern, appreciation & affection from a partner is probably the most devistating- there is no emotional return. Unlike you we've only been married 9years although have known each other for much longer but the years seem to count for nothing from spouses point of view as long as they gets their needs met.

Where do we go from here? I'm not sure but we have to do something for ourselves- not helped by the belief that we, as carers, should be angelic creatures; constantly unselfish, untiring, ever empathetic, supportive & uncomplaining.

How can this be possible we're merely human, surely we have rights too?!!

Maybe I will do as my daughter suggests & make an appointment for myself to talk with our GP- he has chosen to be our specified doctor & has done more for us in the last 2months than anyone over the last 3-4 years

Maybe you could do something similar? A Parkinsons nurse or another Health Professional you have a repore with.

I'm sorry, I've been very selfish & highjacked your post, but, I suppose, I hoped it may help to recognise that here, at least, is one very imperfect being who really does have some understanding of your situation

My very best wishes to you

Jan

[Sisumoxie]

Hi I am Caroline, (uk)- i don't know if i can help but I am also coping with Parkinson's (my mum) on my own- it's not easy xx