I’m struggling with making the decision as to whether or not to continue caring for my partner who has had a stroke/mini strokes, and who now has symptoms of Parkinsonism.

I have my own health issues with Fibromyalgia, IBS, RLS, migraines, sleep problems, depression and anxiety, and care full-time for my partner.

He has had several falls so cannot go out on his own, and needs help with day to day living as he can no longer use either of his hands. He has Carer’s to come and help him with washing and dressing in the mornings, and they make and feed him breakfast which really helps to take the load off me. I help him otherwise with: making all the other meals, feeding him, doing the shopping, laundry, helping him to blow and wipe his nose, shaving, giving him his medication, taking him for walks and to appointments, helping him clean up after using the toilet, changing the tv channels, helping him into bed and putting the covers over him, and being a constant companion.

We no longer sleep together as intimacy is very difficult for him now, and he would get up very early in the night which would wake me up. He would also thrash around in his sleep and I even woke up with a black eye on a couple of occasions. His snoring would also keep me awake too, or I’d have insomnia and RLS myself anyway so would be exhausted. As he is at risk of falling, the Carer’s suggested it would be safer for him to sleep downstairs, and I am sleeping a bit better now.

I also pay for everything as he was made redundant about 5-6 years ago and I was still working. Since I’ve been unable to work we’ve lived off my savings (money from when my father died,) and Paul’s only income is the disability money that he has just started to get now. Our joint application for benefits has been refused due to my savings which are declining rapidly, and we can’t apply separately as we live at the same address. Money is a worry.

I am managing ok right now and as long as I take care of myself and don’t have a flare-up, but I am worried how long I can keep this up for, and whether it’s going to affect my own health. Recently I’ve started waking up in the night in a panic, and I’m finding it harder to do things and my Dr has put me on antidepressants.

We are waiting to see the neurologist again for the results of Paul’s latest MRI scan and for a diagnosis. I think that will shed a lot more light on things and what to expect in the future. Paul had gradually deteriorated over the last 4-5 years and it’s been shocking to see the change in him.

I love him dearly but struggle with seeing him deteriorate, and am wondering at what point I should say that I am no longer able to care for him anymore. I feel so bad and guilty for even feeling this way, but I don’t want to go under too with my health as well.

When I first had Fibromyalgia he used to help care for me, as I would work part-time and would spend my days off recovering in bed. I eventually had to give up work as I had to also care for my elderly narcissistic mother who had Alzheimer’s, until we managed to get her into a home. Since giving up work, and my mother dying last May, things have been less stressful in those areas. Now our situation is reversed and I now care for Paul full-time.

Has anyone else been in a similar situation, and what helped you to make the decision to either continue caring, or to say that you are no longer able to? It would really help to know that I’m not alone in this situation. Thank you.

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There is going to be a point where you can't do it any more. There's no shame in that.
Helpful Answer (1)

Cathy's profile says she is from the UK. Hopefully Countrymouse will join the thread.

My opinion, if you have to take medication to deal with the situation, then its time to give up the caregiving. To be honest, I don't know how you have gone this long. I have a friend with fibromyalgia and her flareups are horrible. I would think you'd qualify for disability.

See what the doctor says. Then go from there.
Helpful Answer (1)

Sounds like you are doing a LOT of care and that hubby is extremely dependent at this point. And probably not going to get any better.

The first thing I wonder is if you can hire another caregiver to cover more hours in the day and take over some of those difficult tasks that you are currently doing.

With your health issues, you need more help.

It's so sad that money is almost always an issue with these caregiving situations. We all need more help to take better care of the LO, as well as ourselves, but it's expensive! But I guess money is an issue in every facet of our lives, not just this realm.
Helpful Answer (1)

See an elder law attorney. Are you married? Medicaid will not impoverish the well spouse. Never mind the Medicaid, I see from your profile that you live in the UK. There are some on this site that know something about UK and care. It isn't me.

It is ok to say you cannot provide the necessary care any longer. Most get to that point.
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