Nothing wrong.It is the nature of the beast i'm afraid.If I could only guide you by the hand through my devastation.Yet amazingly,my Wife is still with me.She needs to understand,you need to help her understand.Total honesty.That's what I did.Leave me or stay.You know the lot.Nothing suprises her now.That in itself allows her to cope.Knowing everything.Acceptance on all sides.Trouble is,pd is sometimes not the only problem.
All the best
I don't know if stress is affecting you both bouncing of each other,but I've tried to explain to the family it's the pd effecting me.they don't get it.ive been told by the wife that she wont be looking after me and that I'm going in home..she gets angry but I stay calm because it's not worth the pd making me worse...
I wonder if any of you belong to a branch and if that branch has support for both pwp's and carer's. In the branch I retired from after many years, we started a group day which incorporated having separate groups sessions for each and this was very much appreciated by both groups.
They were able to talk about anything they wanted in complete confidence and exchange idea's and solutions to various problems. Everyone needs to off load sometimes and this is such a good way of sharing and relieving stress as well as making new friends [u]together[/u]
I feel that support for both groups is sadly lacking generally and years ago we used to have someone at national office in what was the welfare dept giving talks about coping with pd and the family, she was brilliant and I feel that national office should get back to having someone like her.
I know from when I was dependent on my husband for several years when I was confined to bed how hard it is to make people understand how you feel as you can't see pain, likewise I have looked after my husband for almost all of the thirty years he has had pd and we have struggled many times coping with this unpredictable condition.
Perhaps you should lobby HO to look into supporting both groups locally and setting up sessions for people to attend, this is what this lady used to do and it worked very well.
I wish you all the best and hope that you can get a better understanding of both your situations.
If my Wife said that to me.I would say there's the door now,what are you waiting for.Mind you I don,t intend to be around that long.
My Wifes Father died 5 years ago.He had Alzheimers.My Wife is sooooo forgetful now.I have to backtrack her over loads of things.The kids are like,"how can you not remember that Mum".Now if she ended up with the threat of going in a care home,I definitely would be doing my damndest to keep her at home.
I think that is awful for your Wife to say that.Mind you,we never know what our other halfs are thinking most of the time.I thought my Wife was trying to poison me a few years back.Funny how the mind works.
All the best
Many thanks for your reply, I feel that these separate groups would help a lot of people and if they were available all around the country it would prove to be really successful. If branches couldn't do it then perhaps national office would organize them which would be very helpful to the many people who do not go to a branch.
I think I still have a programme of the days we used to organize which was kindly given to me by the lady at national office all those years ago, I will look it out.
Sometimes people think that men won't enjoy the days but in actual fact in the ones I ran men took a really big part in them and they all agreed it helped whether they were a pwp or carer, I used to run four per year and they was always about equal numbers of men and women even counting for people living on their own.
I hope you find a group near you and if you go to a branch see if they will give it a go.
I am so glad you didn't give up, as you have found people are usually very friendly and really someone on the committee should always be at the door ready to welcome new members. Although I was chair as well as many other committee roles I felt it was one of the most important parts of my involvement was to be aware of new members and I would usually have already had a chat on the phone with them, so I would try to introduce them to people with similar interests and that worked very well.
Branches are not for everyone but branches need younger members otherwise they will fold and that would be a great shame.
I hope you have very many happy years and make a lot of friends.
Hi all now three years on almost and yes she did leave in December 2012. I now have a council bungalow which have been in for two years now. Wished her all the best which some may find surprising but the way I see it that even bad feelings are still feelings for someone so now have got rid of the bad feelings therefore I have no feelings at all for her, if that makes any sense lol.
now another one which is family, don't know if it is me or not but I have two brothers only about two miles away both of them but lucky to see them once a week if lucky !! I do not think they realise how hard it can be on your own with PD taking a couple hours to get ready in the morning an hour to eat a meal but it is just their company I want.
Have also in March had DBS as Stalevo was doing me no good at all but had it mainly for Dystonia which I was having episodes daily which was core and cervical Dystonia and had to dial 999 as it was compromising my airway.
Just read your last post and aspects resonated. It's not a novel thought, but I think, like many things I guess, that it's impossible to really explain how this feels to those who don't have it. A really good friend who is a great listener says she hears what I say when I try to explain how tricky I find it to relax but she doesn't get it; I can feel like I've got a mass of electric ants buzzing around inside but she can't see it. There's always part of me that's trying to control it - all the time - and for me, it's the knowledge that I can't ever get away from it that feels like it's going to suffocate me. And I'm lucky to have friends who listen, and I know that they suffer too, but they can escape from it and I am so jealous (unreasonably so - I know). I guess I'm saying that I suspect your brothers don't know how hard it is (maybe they can't) and that our own feelings and reactions aren't always reliable: I live on my own too and sometimes wonder if siblings are already considering who (if anybody) is going to get lumped with me - but it could easily be just too much time alone and lack of sleep. Who knows :) J
Yes I know exactly what you mean it is all inside but so outward signs so people think all is ok. All of your muscles are moving all the time whether got tremor or not. This is why small tasks are hard to carry out you are already fatigued before you start.. Yes no matter how you say it they just don't get it.