Becoming a carer


#41

Thanks a lot Reah, I wouldn’t have seen the post otherwise

Regards,
Pippa


#42

You’re welcome. :blush:

Best wishes,
Reah


#43

Thank you Pippa. I’ve received your PM and I’ll continue this conversation privately, but I just wanted to say publicly, in case it helps others in a similar situation, how amazing it was to receive your reply on here yesterday. It felt like a block of ice inside me melting. It was extraordinary, and unexpected. The mere fact of making contact with someone else who empirically understands - I never imagined it could be so powerful. So to anyone else feeling alone and wondering whether to reach out, I’d say “please, for your own sake, do it”.


#44

It’s good to read this thread. I feel dreadfully alone much of the time. My husband has had PD diagnosed for 11 years, he’s 74, ten years older than me. He’s still mobile but I see PD creeping and stealing a little more of him every day. We live in a rather isolated situation and although I still get out and about, I feel increasing anxiety about him falling and just lately he’s been getting confused more. He’s been to the local memory clinic and they diagnosed 'some cognitive impairment '. He doesn’t want to go to a PD support group, because he doesn’t want to see how bad he will become. He is becoming more and more isolated and as his needs occupy me more, I fear that I too will be even more alone.
I guess someone will read this, and so many of you are so much worse off than I am, I feel kind of selfish. Thanks for being out there.


#45

So sorry you feel so alone, Giffy1. I hope reaching out here and forming some sort of connection with those of us in a similar boat will lessen your sense of aloneness. It helps me, but if I’m honest knowing there are so many of us struggling with this challenge and feeling so isolated also makes me angry because we are doing such a hard job and there is so little understanding (I think) in society of what that’s like and what it means. I guess many people would say that looking after each other as we become infirm and as we age is what comes with a long-term relationship, with marriage. But that’s too glib a response. The situation you and I and other carers find ourselves in is very specific to our time and culture. Not only are people living longer, but the dispersed nature of modern families means that when one partner develops a long-term condition, the other partner cares for them alone, whereas in earlier times and in other cultures much of the day to day burden would be shared within the family and even the wider community. On the plus side, I find that my husband‘s condition, and the particular situation we’re in at the moment where he’s suffered a bit of a crisis and isn’t at home for the time being, has brought out extraordinary kindness in people, some of whom I didn’t know very well beforehand.
I found this on a website recently:
“One woman stated that after caring for her husband for 20 years, she stopped calling it Parkinson’s and started calling it “Infinite Disease”, because there is no end to the number of ways it can break your heart. When you are caring for someone with Parkinson’s, Alzheimer’s or any other long-term disease, it’s not at all unusual for friends and family members to inquire about the condition of your loved one and never even think to ask about what’s happening in your mind, heart or body. As a caregiver, you have to learn that you cannot count on anyone who hasn’t done what you’re doing to recognize or understand how incredibly difficult this journey can be.”
I guess that’s why we’re all here in this forum.


#46

Hi Giffy1,
Good of you to bare your soul and put it out there…it’a bit like fishing ( not that I go fishing)…casting the line and hoping, trusting, that something will happen. Takes courage and vulnerability.
Such a huge adjustment to expectations and hopes as to what life was going to be like , and so many dimensions to the experience of caring for a partner, some of which I find very difficult to put into words.
For what it is worth, I think that comparisons are odious…some people seem to have it “worse”, others “better”. But who is to say ( not that it matters)… ? So many variables ( physical condition, emotional and psychological resilience, past experience , belief system, support system, financial resources etc etc ) that it makes it impossible to quantify in any but a very superficial sense. We each have enough on our plates without adding further guilt for feeling bad and looking over our shoulders at what others are doing, or what we think they are thinking, though I do that a lot and it doesn’t help, and I am often wrong.
A lot of the time I don’t even want to have to explain or describe how my OH is, or how I am…can it not be taken as read that it is hard and that a spontaneous and unconditional act of kindness, without being asked for, is what is needed? I guess that some, many , people fear getting it wrong ( and that is easy to do too), or interfering or whatever…it’s not an exact science. This might sound awful, but having to add “be grateful “ to my list of things to be done is sometimes a step too far .
I am sure we all ( in this boat) fear or dread what is to come…in my better moments I force myself not to think about it, or not beyond the next month or so, or tell myself that I really don’t know ( having married his lordship 27 years ago, much against the views of my parents who predicted problems if we lasted over 20 years due to the age difference…on the grounds, apart from love, that he or I or both of us could get run over by a bus the following day…) Sufficient unto the day, and all that (…is the evil thereof).
I hope you are able to let some of this glorious sun seep into your skin and bones and be warmed by it,
Best wishes, Pippa