Lonely


#1
Hi. My beloved husband has been diagnosed for about 4 years now. He's kind of doing OK, but I weep inside for him, for his awful difficulties and he so rarely complains. I have four stepchildren, who are all lovely people, but I can't talk to them much about how I feel - he's their dad and of course they ask how he is but they have no real idea how difficult life is for him. Or me. I just want to cry so much of the time. I love him so much and he's being taken away from me little by little. I just want to talk to someone about it, and I'm sure I will bore people, or embarass them.

#2
Hello Giffy. I am often here in the night. I was dx in 2010 and I live on my own. Do you have a local Parky group that you are able to get to? Some areas have a group for carers and just chatting to people in the same situation can be so helpful.

#3
Hallo Giffy,
like you i am carer -but with this difference - we are both 90!
Seems so hard when you have spent a lifetime together.
My wife is - or was - in a nursing home but had to go into hospital on Saturday because she was jaundiced.
making progress and hopefully will soon be able to go back to nursing home.
understand your heartache only too well and wish you well.
so hard to be realistic - you are doing all you can to support you husband and all our thoughts are with you.
Can you have a 'day off' with help from someone? I think this really helped me to relax and recharge the old batteries!
Thinking of you.

#4
Hi, both. Thank you for your replies; it's nice to talk to someone who understands. I do have days "off" - I still work 3 days a week. My husband is still in the early stages, he's gone out now to do some shopping and he goes to the gym where he does core stability exercises which have helped enormously with the wobbly legs stuff. Perhaps because it's still early for us, is why I still find it so awful. And, he's my second husband and I've only had him for a few years, and it just feels sort of unfair...silly, I know. How sad that your wife has had to go into a home, it must be awful to be parted after so many years being part of each other. I hope she gets some comfort from you visiting her, and I hope it's a nice place.

Thank you, Mosie, for the suggestion about the groups. I did check, there's not a carers' one near here. I went (on my own) to a local Parky group, just to have a look and didn't feel it was for us - again, maybe because it's still early stages.

I hope we can 'talk' again soon, thank you again for being there.

#5
Hi Giffy
Im new to here too and as you a carer but for my Dad he is 71 recently diagnosed and struggling to get his head round it all as I am, use this place to say what you feel and dont think that you will bore people as there is so much support on here, and dont feel like you have to be positive on here all of the time as I think alot of people feel better for getting things off their chests and having a bit of a moan sometimes too, I feel quite angry and frustrated by it all and life does seem to kick good people in the teeth we lost my mum to Cancer 15 years ago my sister has been through it too but come out as a surviver and still we remain as positive as possible, somewhere somehow this will all make sense and there is goos stuff out there too, lots of treatments support and caring keep your chin up as much as you can, take care hope some good is coming round the corner for you.

#6
Im getting very emotional reading these posts,my heart goes out to you all.when a lovedbone is effected by ill health it does not just effect that person it effects family friends all around them.everyone trying to do there part.it can be heart renching though.there are pd groups,carers groups,fund raising to get involved with other folk goin through the same,and its there you need to be to talk.talking is best meds i think.some real good surportive people out there.puk helpline can guide you to nearest groupsbin your areas.this forum has wonderful community members to surport you.any questions please ask.im ali been dx 12 years im 44.:smile:

#7
Hi. My partner is 56 and has Parkinson's. I am 42. I feel so selfish and angry sometimes because he wont let me look after him but I know he needs it. He doesn't want anyone to know and some days I just want a rant about how unfair that my gorgeous lovely bloke has this bloody awful disease. We have wonderful gp and consultant and I know we are getting the best care but sometimes it would be nice if someone asked if I was ok. There you go totally selfish but don't judge me because its hard on family to.

#8
Hi Lisa3005
how are you today? your right it would be nice to be asked and its not selfish its normal there are times when I sit listening to people going on and on about all sorts of stuff and just want to scream at them to shut up, but life is like that I guess and we all have to get on with it, stay on here loads of lovely people offering great advice and support and understanding, have a good day hope you and hubby get out in the sun :grin:

#9
:grin:
Good morning Camerarderie, loneliness is a terrible situation to be in, you can be lonely in a crowded room it doesn't have to be in the middle of a bleak dark wilderness, I know exactly your feelings , my first experience of intense loneliness was shortly after learning I had PD when I told my family they were
completely baffled and had no idea of the struggles ahead . I am very lucky ,I have a very supportive clan of Family and Friends who will do anything for me,
but I insist at times that I must do my own thing as my confidence soon goes down hill fast if I lean on others too much,I know this might sound a bit of a contradiction but you have to be lonely in order to deal with the symptoms of loneliness , how many really good friends can you call upon , do you have family members who are compassionate and caring ,an you access any local self help groups
this last suggestion is a good one, I belong to a group called Disabled friends, you don't have to be PD afflicted anyone with any kind of disability can join it is very rewarding , we share our problems, help each other with all sorts of
difficulties ,have trips away for the day, its good and when you get to know everyone the camaraderie element becomes apparent, I would also say that there are many people on this forum , people who I have never met, but who I count among my closest friends , do keep in contact with this forum they can answer so many of your problems and can always be relied upon, we are here to help , if you wish to , you can contact me ,my E mail address is available.
You will be in my thoughts, Kindest Regards
fedexlike

#10
Hi Lisa,
We have stuff in common, there's a ten year gap between me and my husband, and I haven't had him for long enough and it feels so unfair. I love him such a lot, and he's just slipping away little by little in front of me. Chin up, at least we have some understanding people on here.
I don't have any brothers or sisters or family I can really share this with. Hubby has children but they have their own difficulties and I don't feel able to cry on their shoulders.
Not really ready for a group yet, maybe down the line a while.
Night all, thanks for being there.
Giffy

#11
Thank you for all the lovely messages and being so understanding. xx

#12

Hello guys, haven't been on here for a while.  The long wet winter is over and we are out attacking our beloved garden - my wobbly husband and I.  He's recently had his meds increased and is showing all sorts of vulnerabilities now that weren't there a year ago.  We're coming up to Parky's Awareness Week, and I will - like last year - have a cake sale at work, with posters and leaflets available and make a hundred quid or so for the cause.  And occasionally people ask me how my husband is, and I say his illness has progressed a bit - and they look away or make some platitude and change the subject.

TALK TO ME!  ASK ME!  ASK ME WHAT IT'S LIKE, I WANT TO BE ABLE TO SHARE SOMETIMES!!

Ah well.  Onward.  Summer's coming.