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Living alone

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Jackson
Living alone

I was asked who I lived with by a specialist the other day and the response when I said I lived alone was a prolonged silence then on to the next question. I also constantly read about the importance of involving friends and family and carers in all aspects of living with Parkinson's.

Now (apart from the simple advice sheet on living alone with PD) I wouldn't guess it from reading the current literature, but I know, in reality, that there are people other than me living alone with Parkinson's so I'm just wondering how people manage the expectation that everybody has a spouse/ close family/ strong support network? Or maybe it is just me :-Z

J :-)

 

 

TeeHee

J,

I live alone and when attending appt's with someone new yes the question "do you live alone ?"

I reply "yes"

Sometimes I hear a  "ahh" sound as they look at me in a sympathetic way, then write it down, then just carry on.

Yes I think its great to have a supportive family and friends, partner but not so great if you happen to be with someone who shows you no respect, does not have your best interests at heart.

My own doctor views it as positive he says it keeps me going , keeps  me active, as I have no one to make that cup of tea, dinner etc so whilst I have struggled a bit with the pain issue but thats getting sorted after being diagnosed in 2008 still coping at home.

Not sure that helps but not everyone lives in an ideal world and living with a partner having a family nearby does not necessarily mean you get more support.  

Take Care J x 

Jackson

Thank you,

You make total sense and  I think I know that what you say is true in my less grumpy moods. The challenge, I suspect, is to ban myself from morning moaning via the forum - or at least make sure I think for a while before I click. 

Thanks again J :)

Fulmerbucks

Hello Jackson

yes, I too live alone and struggle a bit with the responses and expectations of others. I am older than you  and now live in a retirement village, which is good as others here have similar issues. I have a few close friends but no family in touch.  I still miss my husband though, I was diagnosed after he died so I don't know how he'd have coped, but just having someone close to share it with would be good. 

I just wanted to say be gentle with yourself. Life has dealt you a cruel blow at a young age.  I know all about trying to keep positive and how important that is , but I sometimes find the remorseless positive thinking on the forum a bit oppressive. That's not a dig at Tee Hee who's post I also found helpful.  But there is grieving to be done too. If you find that an occasional moan lets off some steam and sadness  I hope the forum is a good place to put it, many of us will be right behind you

Fx

Jackson

Hi Fulmerbucks,

A friend (who has Parkinson's) lives alone because her husband sadly  died a few years ago, This was before   she was diagnosed  and while she misses him dreadfully, she also feels that he could not / would not have coped with her diagnosis and that in some odd way, living with Parkinson's while trying to protect her husband from the knowledge that she had the condition would have been more stressful than living alone with it. I suppose that's the thing, everybody's situation and experiences are their own and trying to act out and live up to society's idealised expectations (whatever your circumstances) is exhausting and even destructive because you end up living an emotional lie (if there such a thing).

I agree, the concept of unrelenting positivity also suffocates me - but we're all different I guess. I also genuinely appreciate the current and previous posts from people such as yourself and  Tee Hee. Your comments somehow normalise things and I don't feel so alone or so bad for moaning - I just need to learn when to stop :) balance in all things (even eating cake as it turns out :-/)
Take care,

J X X

TeeHee

J,

Someone once said to me if you cannot moan on here where can you, I agree.  I try and be positive some ? most of the time but its equally as good to hear no ones life is perfect or all bad.

Post what you feel there is always someone out there to support you and always someone who is going through the same low spot.

J just be yourself, moan away if it helps xx

 

Fulmerbucks

Love your picture Jackson. Did you draw it yourself?  Makes me smile. Fx 

Eileenpatricia

I live alone and my PD nurse always starts her report with  "    .....came alone" which is similar to the pregnant pause others experience.  I feel like someone's doctor that the plus side is that you can't go down the path of dependence without a fight whereas  it would be so easy to when the random symptoms strike requiring yet another change of game plan.  My mother-in-law had PD and ran her poor old husband ragged.  

 You certainly wouldn't realise from these reactions that single households are  in  the majority

 My experience is that  the o ne thing you must do with PD is to keep moving which  is the plus of  having to do it yourself

 

  

 

 

Jackson

Hi,

I'd love to say I drew the picture Fulmerbucks, but I found it somewhere. It seems to reflect me embarrassingly accurately :) - grumpy and a little rounder than I was a few years ago with an alarming new-found ability to speak (or write) first, then process what I've said with varying degrees of mortification sometime later.

I can't find any information about the wonderful combination of hormonal fluctuations and Parkinson's, but following the thought processes of a few of the posts here, I'd have to say that if I had've been in a long term relationship a few years ago, it would have taken a saint to stick with me even this far -  so probably best that things are as they are.

I appreciate all the posts here, I was beginning to feel like the odd one out but clearly the 'pregnant pause' following an admission of singledom is widely practised.
And while I'm having a midnight ramble, my second least favourite reaction is ... 'at last you haven't got...'.  
So many awful things are happening right now and I really cannot imagine how it feels to be in so many situations. The fact that others' lives are in a state of utter devastation, however, doesn't make me feel better or not better. To need others to be suffering to the degree that I feel comparitively lucky seems very wrong. I figure it's not 'top trumps' -  that thought process doesn't seem to help, or even respect, anybody.
Anyway, I'll stop (I'm practising restraint) thank you for the replies, take care, Jx

Fulmerbucks

Absolutely with you there Jackson. I sometimes hear myself saying "there are worse things" to preempt such comments, but that doesn't really help either.  I've found there are not many people who can hear and accept how i feel without having to try and minimise it  or add some "positive thinking". They are precious and I have to try not to overburden them. 

i see in your pic a warm cuddly creature that's hurting and angry.  It's managing to stay upright on some spindly pins too!  Beaming metaphorical hugs your way. FBx 

Fulmerbucks

Ps those of course are my feelings, may not be yours!  

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