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Am no reading anymore you all sound so low on here think you should all lay off the forum for a while and find a more positive way to pass the time
Your words resonate completely with my experience, and having a husband who is equally older than I am makes me feel even more of a fellow traveller along this awful road with you.
Whilst I find this forum incredibly helpful and reassuring …just knowing that there are other people out there who share similar experiences, what I would really like is someone on my doorstep like you who truly “ gets it “ .but then maybe what I am really asking for is for this all to be taken away from us so that my husband and I could go back to living what used to be a normal life. All the support, kindness , wise words in the world aren’t going to make any difference to thefact of the matter and now that we are “ grown up” big girls and boys, we have to shoulder the responsibility and get on with it and not expect someone else to come along and do that for us. A tough call, especially when other have it so much easier ( though of course many who have it so much worse)
People say we shouldn’t feel guilty for being impatient, irritated, short tempered, etc etc , but we do because we know that we are capable of being otherwise, except at that particular moment when it all gets too much and we cannot summon the energy to respond better. It’s not okay, and we know it’s not okay ( we are decent people at heart) but we still can’t help it. Or at least I can’t. Maybe that is what compassion fatigue and burn out is all about, though I can hardly claim to have been at it for long enough to put myself in that category.
Ultimately each of us is alone, existentially, though we try to hide from or deny that fact in all kinds of different ways, but I have begun to wonder whether truly facing up to it then makes it easier to live with, rather than being involved in a perpetual but unacknowleged battle against it which involves trying to find ways of proving to ourselves that we are not alone.
It’s complicated. However much someone else understands and “ knows” no one can ever walk in our shoes and be truly with us ( then they would be us) and there’s the rub. Falling in love is so nice because it temporarily dissolves those boundaries…but that doesn’t last, as Scott Peck describes so well ( The Road less travelled ). But I digress…
Wishing you a day in which something happens to cause you to smile,
Warm regards, Pippa
I appreciate that this may not be the thread for you, however, as long as people are not being abusive/ offensive in any way or are in breach of our forum rules, they have the right to express how they feel without being made to feel unwelcome on the forum. You are more than welcome to engage in other threads that are more suited to your interests, but please be respectful of other people’s experience/ point of view.
As you know, Parkinson’s affects everyone differently, therefore, we encourage people to share their experiences so that they can get the right information and support they need, here on the forum.
I hope you understand.
I’ve just joined the Parkinson’s forum, looking to find some hope I suppose. My dad has had diagnosed Parkinson’s for the last seven years in which he’s really deteriorated as of the last year. At the moment, he’s unable to do anything for himself, is continuously battling urine infections and confused – not sure if it’s dementia or Alzheimers. At the moment he’s not sleeping through the night, my mother and I are his main carers – it’s taking a toll on both of us. He’s on Clonezapam to help him sleep but no night or day is the same and we’re struggling. My mum struggles more so as she herself is not well, not sure what to do really - suppose I’m just ranting too and currently jittery from all the coffee I’ve had to keep me up at work – after a night of no sleep.
I’m very sorry to hear about your father’s condition. This must be a very difficult time for you all.
Please take a look at our website, where you can find lots of information and advice for those caring for a partner or family member: https://www.parkinsons.org.uk/information-and-support/caring-someone-parkinsons
If you ever need help or support on any Parkinson’s-related subject, please remember that you can always give our Helpline a try. You can reach them via email at email@example.com , or call FREE on 0808 800 0303 . They’re available on Monday-Friday from 9am-7pm, and on Saturdays from 10am-2pm.
I hope this helps.
For those who object to the content of a post, leave the post.
For some this is the only outlet they have that comes close to understanding the extreme complexity of PD. The strands spread far and wide… friends, family…etc
Leave them to the necessary misery of having to share.