Hallo


#1
Hi I am new to this forum so not sure if I am typing in the right place. I would like to hear from other carers, husbands and wives of someone with Parkinsons for some support. My husband was diagnosed 4 yrs ago and he seems to have progressed very quickly. He was only 60yrs (well it seems young to me!) and he now acts and behaves like he is 90yr. I try really hard to help and understand but I still feel I would like to do lots of things yet and he feels so differently. I am trying hard to not moan, he is suffering, has dreadful shaking which the consultant is finding hard to control with drugs and is suggesting deep brain stimulation, but I sometimes feel I am forgotten. I know he has it worse and I try to do all I can to make his life better.
He has a very close relationship with his elderly parents (Dad is 90) and he just seems to be copying them, he certainly sounds and acts like them. I just want to be 60s and go out and have fun.!! Am I the only one who feels like that. Are there any support groups or activities for the partners. I would love to hear from any others about how they cope and still have their own fun without feeling guilty.

#2
hi AMEve
yes i do know where you are comeing from i'm 52 and my hubby is 74 going on 90 yes i do get frustrated as well but i now except that is our lot in life... i do try and get out a couple of times a week with friends but its not the same.
i thought that once the kids had made lifes for themselves we would be able to do all the things that we were unable to do with work and raising a family. it is sometimes hard to be the carer because everyone wants to know how the cared for are and we can get overlooked in many ways.i know we do not suffer the many agonies and frustrations of parkinson's.
have you tried joining your local parkinsons group because there are normaly carers there that you can join up with. there is also carers group's i picked up a leaflet in our local doctors surgery.
if you are able to leave your husband for a few hours perhps a WI group would get you out and about for few hours...

#3
Hello AMeve,

Life for carer's certainly changes and they have many obstacles to come to terms with. Many people find that they have to take over all the usual tasks that their men folk usually do which comes very hard for the older generation.

Trying to support our loved ones takes a lot of giving, in my experience of being involved with a branch for more than fifteen years and doing a lot of welfare I have found it is very different for men carer's than women ones, usually the men still manage to have a social life ie go golfing or to different clubs whereas the women find it difficult to even go to the hairdresser's, I know this isn't true of everyone but it is mainly for the older generation. We also found that social workers when assessing would make sure the men had their needs taken into account where as women are expected to cope better and are not treated with the same understanding. This will probably cause some upset to some forum members but this is how it often really is, I hope that things are changing and everyone will be treated the same. I also know how difficult it is for women to let someone else do the caring and have a break themselves.
There are quite a few carer's organisations, Crossroads and the Royal Princess trust are just a couple, also do consider joining a branch as many carer's really enjoy the company.
I always made time for the carer's to have a time set aside for them to have a discussion group in confidence away from the spouses who had their own group, this enables both groups to discuss anything they wanted without feeling that they may upset each other, and this was a very good way of exchanging ideas of coping with the many changes.
I also feel it very important that people understand the importance of getting all the legal stuff sorted out in plenty of time so that you can put it away and forget about it until needed and this often happens when least expected.

Do try to go for a swim or some other activity or join a group as this gives you that little bit of R&R which is so important especially as time goes on, perhaps you husband could also join a group, they sometimes have exercise groups at the local health/sports centre's they do near me as my friend does a stroke group and some people with PD go as well. Does your husband have any particular hobby or does he play bowls, we had a bowls group within the branch and most people find this a good time to enjoy and gerenally chat.
I do completely understand your position as I have been a carer to my husband for thirty years until he went into a nursing home and am still battling away for his care.
I feel that if you can have an honest discussion with your husband you then may be able to come to an agreement that you both have some time to yourselves.
I do hope that helps a little, do lease keep posting on the carer's section as you will find many other like yourself who will have some useful tips.
best wishes
vivian

#4
Once again Vivian WELL SAID ..

My life has certainly changed during the last 7 years ,it's just getting the balance right . NOT EASY is it .

My husband and I did and went eveywhere together . Especially once our daughter grew older .

I do manage to get him out on a Saturday night with great difficulty .7

Then I decided I must make an effort to go out myself one evening I have fortunately made a few new friends . One of them is younger than me and I reccommend that you try and do the same thing . I didn't find it easy and didn't enjoy myself at all but I kept going and now starting to look forward to it .

I am only out for about 3 hours but it does recharge my battery , I worried all the time when I first went out but now am more relaxed .

Talk to your husband openly be honest and ask him to do the same , We all have our moments it isn't easy but that's life

My mother had to do the same thing when my father became ill and I remember she found her friends had started passing away but she took my advice and made some younger friends . It worked for her

Something I did notice is that my husband started not to show his affection as much , and when he had to go into hospital for a knee op he would normally have been very worried about leaving on my own , but I think it's be cause basically he is having enough of a struggle coping with himself .

He does worry about me and how much he needs my support but it's only what I have been doing for the last 54 years although he of course never needed the basic attention he needs of me now .

Good luck ..

#5
Hello Johnie,

Thanks for your comments, as you say is it about changing to keep up with the pd and often very difficult to get time on your own for even a short while.
One of the reason's that your husband may have changed when going into hospital or even respite is that the loss of doparmine changes things like emotions if you look on the web Dopaminergic pathways on wikipedia you can see all the area's affected, although it only says the motor is affected if you look at the whole picture you will see the functions lists and it all begins to make sense.

I am very lucky because I have been unable to work since I was 29 years old and limited to the house for quite a time, but since I have got a electric wheelchair my life has opened completely. I have always had friends of all age's so I am well blessed. I am told I don't look my age and certainly don't act it, but when you have coped with health difficulties you can't sit and mope and people don't want to know about bad backs, so being outgoing and jolly brings lovely rewards and help with a smile. As I say I am very lucky but of course that doesn't make up for the loss of my lovely husband being away in a nursing and this year I have felt even more sad about the whole situation, I suppose its like when people have been widowed they say the second years is worse because the first is taken up with all the legal stuff where as for people like me the first year you are so tired that the second year it hits home more if that makes sense.
Please have positive thought that I will win the euro lotto tonight as I want to open a lovely nursing home for PD as it's a nightmare trying to find a decent one.
I have lots of friends who would love to work in it so I am keeping my fingers crossed.
best wishes
vivian

#6
Please remember some of us are carers and have Parkinsons.
Reading the previous posts, particular putting people into groups to discuss their problems, makes me feel isolated, as I feel i don't belong to either group. I am sure that is not the intention, this is just a reminder.

#7
hi mandybike
we do know there is many carers that have health proplems themselves and we were not trying to segregate people but it does help some people to have other carers to talk to. i also have problems because everything is done for my husband and being as he is 74 we come into the older age group and as i'm only 52 i tend to be the baby of the group and people tend to think i should be able to cope better because i'm that much younger.