Big hugs to everyone !

You cannot generalize because people are at different stages and ages .We all have different characters as well .

I supported my mother who had a very bad stroke ,and saw others who also had strokes but were affected differently . In some ways it has helped me recognise some of my husbands symptons / moods/ etc . My husband also has dreams and hallucinations occasionally and I can see now why my mother said some of the most outrageous/hard to believe things to us ..

Parkinsons and the like are not subjects we learn at school, we don't get to choose them either .

It does sound like one of your husbands problems is depression . one of the many many different symptons .Have you got a good relationship with your GP . Mine is always willing to listen to me , he has taken us on as a package .I usually write a few notes before I go and pass them to him it helps him get a better picture and I dont feel I am using toooo much of his time ..

I have always considered myself as patient but it does test us and we all have our MOMENTS I am sure . WE certainly do . It Must be much harder for the ones who maybe didn't have such a stable relationship in the first place . good to get things of your chests and be honest with each other .

You are all right in saying BE KIND TO YOURSELF AND TRY AND HAVE SOME YOU TIME . It will recharge the battery .

My husband is 77,looking back he has been going through most of the stages for many many years . He has been unknowingly fighting it for most of his life . It just didn't have a name .

At the moment he is sat besides me doing his singing exercises . It certainly helps lifts his and my spirits at the same exercising his throat muscles..

My husband has great difficulty recognising and describing how he feels so we rub along with me sort of guessing lol . At the same time I do search the internet for advice and read all the literature . I normally find the answers ...

Reading this thread I find myself wanting to ask Vivian, what caused you to finally let your h go into the nursing home, was it physical things or behavioural things?Was it his own decision or did you push it? Dont answer if you dont want to,, its just that when I started on this road I decided I would look after my h at home for the duration BUT I may not be able to do that , I might not be able to manage and I was wondering how that happens for other people .Because its a fear that I have, but you are clearly very very caring and capable and he is in a nursing home and the relationship is still ok. If you dont want to discuss please dont but would be grateful if you do want to love Sunray

Hello Sunray,

I don't mind discussing anything as my husband and I have always been open about our problems, I know that this is difficult for some people but during the many group meeting we have been to you always get someone who is really glad that you have brought a subject up that they feel they can't, we feel that if some people don't talk then nobody learns hence you can't sort things out or try to get some improvements to the understanding of PD and the life that goes with it. sorry just realised that it is almost lunch time and our son is coming so I will get back to you this afternoon. best wishes
vivian

Hello Sunray,
sorry this is a long one although I try to be brief
Back again it is difficult to explain all the various problems we had over the years and I to try to be careful when writing on the forum as I don't want to upset anybody, also everyone is so different with how they cope.
Well my husband was a very placid gentle man who lost his mum when he was 9years old so very much appreciated our family life and we only managed one child so we are all very close.
When he was diagnosed he was put on sinemet 125mg and basically find his own level crazy to think like this now. Anyway many people diagnosed at that time developed dyskensia after the first 4years and we used to go to meetings where everyone was arms and legs going everywhere. My husband suffered this for 11years and quite frankly I used to think his heart would give out as they were so bad. He couldn't sit still on any furniture and spent most of the time on the floor. He had a palidotomy, (not sure if thats the right spelling) and that stopped all his movements, they dont do that operation now so far as I know you are awake when it is done so that you can make movements with your fingers for the doctor to check everything is okay. Anyway it was really good and he still doesn't have movement problems now. he was 51yrs when he had the op and is 68 now. We did manage to get a few more hours sleep for the first time in ages but that soon reverted back to about breaks in sleep every two hours.
After that op it wasn't long before he was on an apo pump which served him well for the next 15yrs but in the last couple of years we both decided that he would go into a home while he could take a part in the activities rather than be past it.It was a really difficult time which only lasted 7weeks as he started suffering from paranoia and psychosis caused by being on the drugs for so long and any change can cause problems as well. A 4 month spell in hospital and because that was very difficult for various reasons and he had challenging behaviour, plus my exhaustion the doctors decided he would be best in a home, this we could not find so the PCT agreed that he could come home with 24hour care. Great we thought but although we had some very good carer's the management of these agencies cause no end of problems with changing staff, we had 80 carer's in two years so you can imagine.Never the less he had some lovely times going out with some of them and keeping up his photography etc. Nearly there!
The stress of his behaviour towards myself and the constant changes completely wore me out and our consultant said she would have to make the choice for both our sakes as I couldn't, although of course I agreed I could not go on.
So now he is an hour away from us and we see him at least once every week. Where he is he can go to college two days a week and they have trips out and many events in the home as well.He has been very difficult at times but lovely at others.
We both don't like it really as we were determined to stay together but sometimes you just can't and believe me it is very hard still eighteen months later.
If anybody wins the Euro lotto let me know then we can open a lovely place where people can stay together with all the back up, this is my dream. Please all stay positive as there are many years between all this, but my advice is go the direct payment route and you have more control if you get your own carer's.
best wishes
vivian

Dearest Vivienne That is a very honest and touching story. It is very helpful to me because it confirms what I want to do. I will carry on until someone else intervenes and if and when that happens or something happens I will be honest like you. At the moment all is fine although tiring, but I am probably tired anyway , my husband is the most lovely and patient person although somewhat stubborn. At the moment its more the physical tiredness that I find difficult to cope with but you're story is so very honest and realistic I feel less stressed about the future now. We have got carers coming in and we just pay for those and when we've used all our money on this we will sell our house and then spend that money so we are lucky we have this at the moment . Thank you for telling you're story Vivienne love Sunray x

Hi Sunray,
Thank you for your understanding. I hope everyone realises that to get their affairs in order is also very important as it will make life a lot easier if you ever have to use them.
I am so glad that your husband and you are coping as although very necessary in our case it is heart breaking and a very sad way to live the remaining years of our lives, but we have to make the best of every situation and PD throws different things at you all the time.
best wishes
vivian

I have been browsing through this thread . It's belonging to a huge family

I agree with what you said about winning the Euro lottery Vivian . I have told our friends now is the time that we need it the most .

To put in place nurses when needed a housekeeper and chauffer /gardener occasional SITTER .

We may not like to admit it but it is tiring /frustrating /sttressful for all of us both sufferers and family/carers . Carer is not a word I like to use and I really dislike it when someone tells me how wonderful I am looking after my husband . It's what we have both been doing for each other for 55 years . I am not going to suddenly stop .

I know the day MIGHT come when I will be unable, but nobody knows what is going to happen tomorrow do they . Will face that if it does happen ..

Yes its plan for the worst and hope for the best but then if what one has decided IS the worst then happens there is always comfort in knowing that one has done ones best sunray

Hello Sunray and Jonnie,

Yes you do try to manage at home and we had no intention for it to be otherwise but in the end we had no choice. It has taken me 18months to accept that I could not have carried on and I have times when I think I will get my hucband home again, but I know that it would be impossible not only from my point of view but I wouldn't get the carer's. I know that I did all I could for my husband, much against the consultants advice in fact they thought I would only manage 3 months but I managed another 2 years so you can see how much I tried. It takes a long time to adjust and much heartache so its a day at a time always.
I always tell my friends to enjoy themselves and not wait for the future as its a luxury you may not have.
best wishes to you both
vivian

Like many other pwP, I try every day to feel positive, but reading this thread has given me my first experience - since my official diagnosis two years ago - of despair.