I have read all your posts seansdad,and have been recently going through some traumatic times with j. Im everhopeful of an eventual positive outcome, but if not, i have taken a lot of comfort from your story.best wishes to you
1 Like
I should also have mentioned that I am sure that taking us as a couple our lives are better now than when my wife was at home. My wife’s life is dominated by what her conditions allow her to do. Much of the time at the home she is either asleep or watching TV which is no different from how she was at our home. the difference is that she has someone keeping a n eye on her, popping in to see her with a smile and a cheery word. I have to admit that with the responsibility of 24/7 care on my shoulders I was not always at my most cheerful.
For me, I am now more relaxed and seeing my wife has become part of my regular routine that I look forward to. Consequently I am more like the person I was, which my sons have both remarked upon. That means, I think that the time I have with my wife is nicer for both of us than sharing another miserable day in each other’s company.
I don’t doubt for a second that we are fortunate to have found a home which is suitable for my wife, but I hope that the work that I put in looking at just about every home in a 15 mile radius contributed to that.
I also am aware that my wife’s condition will deteriorate and it will get tougher for both of us but I have also learned to take each day as it comes. There is no point in worrying about the future until it gets here. We spent too much time thinking about our retirement to thenhave it taken away from us, so I’m not spending more time worrying about things before they happen!
3 Likes
It was simply lovely to read this post seansdad. I would not wish anyone to have to go through what you have been through, nor the many others who have faced similar dilemmas. It may not have been how you saw your lives and it may not be what you wanted but you have managed to get a ‘happy ending’ of sorts and a routine that suits you all as individuals and as a family. That is no mean feat.
I hope you see your wife’s smile many more times in your daily visits to see her, for it will still be there just buried a little deeper.
Tot
1 Like
Yet again, I’ve find myself caught up as a carer.
11 years ago, I lost my 39 year old son and then my husband 5 months later. I have been (and still am) dealing with complex grief. My son’s death was sudden, but my husband’s was long and for 15 years I was his carer.
After a few years on my own, I became involved with an ex colleague who told me he was in good health. We had 2 OK years together when he was diagnosed with PD. He also has heart problems. We don’t live together but see each other a lot. He stays with me 4 days a week. I used to stay at his flat 1 day a week but that has now stopped. When he is at his flat he has ‘ready meals’ and a cleaner.
I’m not sure which PD symptom is the most difficult to deal with. I especially hate the awful sebum odour thing and the apathy which causes him to just sit and stare into the middle distance for hours on end.
I feel trapped in a cycle of preparing for his arrival, cooking, constant cleaning etc and feeling sorry for myself when he’s with me. It’s odd to be in the company of somebody, yet feel so lonely.
I’m 76.
My friends tell me it shouldn’t be my problem, we’re not married, but I care for him and can’t just walk away. Yet, I feel so miserable when we’re together. If I hadn’t spent so many of my younger years being my husbands carer, perhaps I’d be coping better now. I just feel resentful for the lost years.
2 Likes
Hey, thank you for posting.
It’s so stressful and difficult being a carer and carers of people with Parkinsons have one of the highest caregiver burdens due to the mix of both motor and non-motor symptoms. To be honest, I have been with my husband for 26 years - the first 10 years with Parkinson’s, it was ok - he was relatively independent but then the last two years have been extremely challenging with both the loss of mobility and the cognitive decline. He is now in Advanced stages and what I think is stage 5 as he has all the markers of this (PD dementia, loss of most mobility, etc) Because we had a very strong foundation and loving relationship, that has helped me cope. We have a 20 year old son who helps with the care and a strong support network. We are in an age gap relationship with me at 55 and he is 81.
Personally, I think if you feel miserable now, 2 years into the disease, it’s only going to go one way and will you feel any happier? When you are not just doing all the cooking and the cleaning but also helping when he falls, helping with toileting, helping him if he developed PD cognitive decline? It is hard - but if you say that you just want to be friends but that you really can’t get into another relationship where you become a carer.
You can still visit and hang out at times and perhaps help him with lifts to appointments. Pulling away now gives him an opportunity to find another relationship OR, more likely, put in structures of care which don’t involve you. But personally, I know that once sadly my partner has passed on, I will never ever get into another relationship because I could not bear it if they developed a neurological illness like Parkinson’s which lasts a very long time and which ultimately place a huge burden on caregivers. Like you said, people don’t know they will develop a neurological illness - they can be in good health when we meet them.
I totally understand where you are coming from and I only have considered myself a carer for 2 years… I can’t imagine doing it for 15 years and then doing it again. Anyway, there is a facebook group called Partners of People with Parkinsons - do a search and many of the carers there are caring for people with advanced parkinsons and can give you their honest views. Whatever you decide, it’s your choice. Just don’t end up feeling trapped and resentful!
2 Likes
Good afternoon itsml … Sorry to hear that you are struggling with such difficult circumstances & that life has not been kind to you.
You don’t say whether he is mobile or not. If he has his mobility you should get out together. Do plan your life and get more out of it. Life should be more than just cooking and cleaning.
If he were not in your life would your life change at all ? What would you do ?
Do you think he would enjoy life more in a nursing home ?
Do you do anything in the 3 days you are on your own ? Or are all your days basically the same ?
Of course you should have an enjoyable life and think more of yourself and what you want to do.
If you had read an identical post from someone else in an identical situation to you, what would you advise ?
Best of luck.
Steve2
1 Like
Hi,
I feel I have moved into the role of a carer now as my husband seems to rely on me more and more as his Parkinson’s progresses. It seems to have crept up on me so that I haven’t really noticed the changes except that I do more and don’t expect him to do much on his own now as he gets confused or motor symptoms get in the way. He was only diagnosed a few years ago but it seems to be changing quite quickly. Sometimes I get the feeling of being trapped because we have to go at his speed or make more restricted plans because he can’t manage and this makes me feel really guilty that I am feeling like this too because it is not his fault. I find it difficult to go out to things without him because I feel guilty that I work and he is on his own but sometimes it is really hard being the carer and feeling alone and very responsible. I have started on some therapy of my own to try and help, but have not told him as he will start googling it and I don’t want to worry him. I have felt as if reading posts on here there are other people who do understand so just wanted to connect. He is able to function without me at the moment but it does worry me where this is heading, but I guess I will cross that bridge when I get to it. I guess it just feels as if it is no longer a partnership but a care-relationship which is the saddest thing. Reading others posts is helping a great deal.
2 Likes
Hi Katie, thank you for your post. We hope you find the community useful. Thank you for all you do caring for your husband. We understand how difficult it can be and we want you to know you are not alone and how you are feeling is completely normal.
We have some resources on our website for carers for people with Parkinson’s which you might find useful. It includes a tool to find local support groups and you can find it all here: Supporting someone with Parkinson's | Parkinson's UK
If you need to speak to someone or have any questions, please do call our free helpline on 0808 800 0303. It’s totally confidential and our specialists will be able to listen and answer any of your questions as well as offer you advice and guidance as you navigate this process.
We hope this is helpful. Please do reach out if we can help further.
Take care,
Parkinson’s UK Moderation Team 
1 Like
Good evening Katie … Well done. you are clearly doing a brilliant job caring for your husband.
I am a single man, aged 71, living on my own & managing ok. I was diagnosed two years ago but have had it for a number of years undiagnosed.
Yesterday I got sent a questionnaire from the hospital physio department, which I had been to 6 months ago, asking how I was managing with daily life. I had to score each question from one to ten. Ten being managing well & a score of one if I was not managing at all. I was amazed at how many twos & threes I scored myself. Also whether I felt I was getting better or getting worse. I do feel I am getting marginally worse.
Because I live on my own I have to manage. If I did not live on my own I am sure I would be relying on the other person a lot more & that would not be good for me.
Could your husband be encouraged to do more for himself …
What if you got hit by a bus or became ill yourself …
Just a thought.
Best wishes
Steve2
1 Like
This is a really important thread, and thank you all for sharing such valuable advice. Caregiving for someone with Parkinson’s is a demanding role, and it’s essential to remember that you can’t pour from an empty cup.
The most crucial advice here is the importance of seeking support. Whether it’s through a local support group, online communities like this one, or just having a friend to talk to, a strong support system is vital. Don’t be afraid to ask for help, and remember that taking care of yourself is a critical part of being a good caregiver.
2 Likes
Dear Steve2,
I have been thinking about what you have said and have been more aware of seeing what my husband can do for himself a bit more - and sometimes I have been pleasantly surprised what he can do and other times quite shocked at what he can’t do, but at least I feel that he will ask when he does need help and can’t find a work-around, rather than hiding it, and I don’t feel I have to ask all the time. Feeling more confident that he will say if he is struggling is actually quite positive as it means I don’t have to worry all the time if he is struggling or not.
Best wishes
Katie
2 Likes
Thank you for sharing with the forum, @KatieMui. Lovely to hear how you and your husband are navigating his Parkinson’s. Please do reach out if you ever need any advice or have any questions.
Best wishes,
Parkinson’s UK Moderation Team