Hi there
I’m not sure if I’m using this correctly, I’m new on here. I’ve written this deleted, written again. I can’t find the words. I feel I’m not a very nice person, I’m not the one suffering with the illness.
My husband has was diagnosed 2 yrs in December. The year before that he was diagnosed with essential tremor in his hands.
Since his diagnosis, I don’t know how to say it, but I feel our world has crumbled. He’s not the person he was, (that sounds so nasty) I’m literally in tears writing this. He was mild mannered, funny, caring and my absolute rock, he loved me to pieces. We had such a good marriage.
Now He barely speaks to me, I feel he blames me for his diagnosis as I literally forced him to go back to the doctors. He’s more his old self with everybody else. Especially our adult daughters.
His posture is terrible, he won’t exercise, he knows walking is good for him, but he doesn’t do it, he used to before diagnose. He doesn’t let me attend any appointments, says he’s not a kid! So I feel in the cold, I have no idea what is going on, all I know is he is on a 3 x a day medication and I think a slow release medication overnight.
He’s drinking 3-4 bottles of beer, most nights, although low alcohol. He knows I don’t like this. So purposely leaves the bottles around the kitchen, just so I know. I ignored them, we ended up with 11 bottles on the side, he was never going to recycle them. There’s lots of little things like this that he is doing and I feel it’s to get at me. I feel I’m making this all about me, so I can’t talk to anybody. I tried with his mum she doesn’t see it, just feels yes he’s quiet, his posture is bad and if I keep going on, I’ll make him worse. She just made me feel I was making it all about me, didn’t want to listen. I don’t want to burden my daughters😢 they worry enough. I’m sorry to go on, I’m sorry if I’m making it all about me and if I am sounding nasty.
Hi Lost,
We’re so very sorry to hear you’re in such a difficult position. There are no easy answers in a situation like this, but what is important to remember is your mental health matters. Have a look at this section of our website: Carers' support | Parkinson's UK for some more information on carers’ support. We would also strongly encourage you to reach out to our helpline, which is free and confidential, and speak with one of our kind and supportive advisors. You can find them on 0808 800 0303, and you can find more direct support contacts here: Our support services | Parkinson's UK.
You will hear from our community as well, but do take advantage of these tools we offer carers. You are not alone in any of these things you’re feeling, we have heard these sentiments before, and there are people out there who want to help.
With our best wishes and warmest welcome,
Jason
Forum Moderator
This sounds like he is depressed I went into a bit of a tail spin after my diagnosis.
I tended to dwell n the negatives which made my symptoms much worse.
I looked on YouTube and discovered things like keto and intermittent fasting made huge impact on PD ,
Also photobiomodulation/red light therapy helps so that changed my focus and my mindset some very useful videos on the subject. They helped me so give them a try
Thank you for your reply, @Lar thank you for listening, sorry to hear your diagnosis. Sounds to me that you’re trying to help yourself in every way possible, pleased to hear this. Hopefully with time my husband will do the same🥺
I too sometimes feel he is depressed, but trying to get him to admit or go to the doctors is another argument🥺. Sometimes it’s better for me not to say anything at all.
Thank you for the advice, I’ll have a look. My daughter will be here at the weekend, so it may be better for her to chat with him, he listens to her.
Take care of yourself xx
Thank you so much for your reply and advice
I am so sorry you are going through this but I know exactly how you feel.
My husband is just the same.
He won’t exercise or walk although all the experts say that can help.
He sits all day in his chair and doesn’t watch TV or read.
No conversation and very often doesn’t answer when I speak to him.
It has completely changed our lives
I think this is how it is with some patients where as others will make a bit of an effort.
His neurologist has said less meds more excersise and the physio even came to the house but it has made no difference
Do you have many friends as I find they are my saviours?
I go out as often as possible and just leave him to it.
Seems harsh but it’s the only way I can cope
Sorry I know this is not a lot of help but it isn’t your
fault that you feel so bad and neither is it his. Just this awful disease
Best wishes please message me if you need to chat
Good evening Lost … Speaking as someone on the other side of the fence in that I have Parkinson’s [diagnosed June 2023]. I live alone in a 1 bed flat & for the past
2 weeks I have not done a thing. Even small jobs like writing how I feel in my diary is a job too hard. I find it is a real effort to make myself something to eat & some times don’t bother till late in the day. I did get Covid 2 weeks ago but feel I quickly got over that. Normally I play indoor bowls every day but haven’t played for 2 weeks & am not missing it.
If I did live with someone I think perhaps I would not appreciate them telling me
I should exercise etc … It is clearly up to me to get out of this mood I am in which
I hope I will do soon.
Probably try & leave him be & be there for him when he is ready to except help.
Not much else you can do is there?
Do look after yourself & try not to worry about him.
Best of luck
Steve2
Thank you so much for your reply, yes you’re right it’s an awful disease. I’m so sorry for your situation too, you’re not alone. It is so hard and absolutely heartbreaking to see how PD affects a loved one, if that’s the right thing to say. I never feel I’m saying the right thing lately and when I do, I worry about what I’m saying. Maybe you’re right, maybe I need a bit of me time, but again by saying that, I feel I’m making it about me🥺
Hello @Steve2
I am so sorry to hear your diagnosis. It must be so hard living alone too. All I can say to you, is please try to help yourself, try to get out and do the things you enjoy with your friends. You’re not missing it, is that you don’t have the motivation to go anymore? Would you enjoy it once you were there? My husband has no motivation.
When I can actually get my him to go out, he does enjoy himself.
Covid can really take it out of you! It took me a good 6 weeks to get over it.
Yes you’re right maybe my husband is just thinking, please stop going on, I’ll do it when I’m ready. Maybe I should back off and see how things go, for a while. He may surprise me.
Thank you so much for replying, when you’re feeling the way you do, i really appreciate your time.
Could you speak to your doctor or do you have a Parkinson’s nurse to speak to, tell them exactly how you’re feeling?
Thanks again, I am a worrier, but I will try, take care too.
Hello Lost … Thank you for your reply which I enjoyed reading.
I think it must be very difficult for someone not having Parkinson’s to know what it is like to have Parkinson’s. I have had cancer & having Parkinson’s is nothing like that.
Cancer is extremely frightening, Parkinson’s is boring by comparison. Parkinson’s makes living one’s life far more challenging. It doesn’t so much take your life but slowly erodes the pleasure you can get from life.
A trip to my GP or consultation with my [excellent] male Parkinson’s nurse would only lead to more pills or different pills. I do not feel this would do anything to improve my quality of life so what would be the point.
I’m not in any pain & life is pleasant enough. My bucket list went out the window months ago. No point in dwelling on it I’ve had a good life. I could be a lot worse off than I am.
Living alone is easier.
Fatigue / tiredness / lack of sleep is a big problem for me. If I am over tired I do not enjoy doing anything. Tiredness also affects my walking / balance / standing. I feel far better at times just lying on my bed watching TV or using my computer.
I did go bowling today but was so tired I did not enjoy it. Playing again on Friday, Saturday & Sunday. If I was not already committed to play in these club matches
I would not go.
Remember to not worry & look after yourself.
Thanks for your interest.
Best wishes
Steve2
My husband is amazing with his Parkinson’s, eats well, exercise however he is declining fast now. I highly recommend your husband to talk to a person who is motivated. He can learn a lot. My husband is not very good at listening to me so he uses other sources that works.
Hi please dont feel bad.
My husband had PD for at least 26 yrs. We never argued before but
I tended to be snappy as time went on. From our experiences I feel the most important thing is try to exercise at least a little daily. Most importantly socialise…together AND separately. You will need time for you ! This is a big life change for him and you. Two years ago I was diagnosed with PD. We were both gutted. He felt upset and sorry for me. I was in denial at first but then worried I might not be able to carerfor him. BIG WAKEUP CALL!!
we only get one today (as we know)so live it to the full. Wether its going out together/with friends/ PD meeting…OR sitting at home watching the most rubbishy tv. Theres no right or wrong there will be somedays better than others.
Try not to carry negative feelings over into the next day. Fresh day !!
Talk to PD org. or Parky Nurse try talking about things hed like to do. We managed a cruise in April.
Sadly my lovely hubby died in July. We were together for 53yrs and I loved everyday, although there were tough days I cant lie. Who knows what the next phase of my life will bring. I love my family but dont want them to change. Theres lots I want to do before Im ready to give in. Please dont worry, in time, you’ll find a way to relax more.
You’re welcome @Steve2
Thank you for taking the time. So pleased you beat cancer. You’ve really been through it and then to have Parkinson’s too🥺 life is so unfair.
I think you’re right, it’s very hard to understand the illness and all the different symptoms and to me everybody’s symptoms seem to be different. My husband is a totally different person. No longer wants to do anything, see anybody or go anywhere, but atm I can talk him round. I don’t want to go out without him and when I do I feel awful, then have to do all the explaining to people as to why. Some are ok, some say I basically should have forced him! Seriously! How?
They don’t see his symptoms behind closed doors. I’ve noticed he’s fine with everybody but I feel that’s getting harder and harder to keep the act up for him. I feel he’s embarrassed and that’ must be and awful way to feel around family and friends. I’ve tried to talk to him about it but he says I’m being ridiculous.
My husband hates taking the medication, he struggles more as he’s never been an ill person. Always been healthy, but if he did catch a cold he was dying and it was worse than anybody else’s🙄
Could you speak to him in general, not regarding medication? do you have any other support, do you go to any groups at all? I hear they are very good, although I haven’t been myself yet. Yes I guess living alone would be easier as you can do what you like when you like.
I’m pleased you got out, so annoying you were unable to enjoy it. Did you enjoy the social aspect, although tired? Could you possibly have a nap before you go next time? Would that help? My daughter turned up with my grandson today and he’s gone for a walk with them, but if I ask, it’s a no cba.
Thank you for your reply, try to keep going out and socialising.
I’ll try not to worry, you take care
Hello @CC2
Reading this has given me hope, thank you for replying, maybe with a bit of time, we can gradually turn things around.
It’s weird it’s almost as if he’s thinking, I’m not walking and im not exercising and Parkinson’s isn’t going to make me. He used to walk before diagnosis, but never really been into exercising.
Im sorry to hear your husband is declining more so, it must be hard and that’s so sad for you both. We also know with this illness it’s unfortunately inevitable. This is why I wish my husband would do more to help himself now, whilst he can. He does eat well and healthily. He has actually gone out today with my daughter and grandson. First time he’s walked in months, if she phoned, it’s to easy for him to make an excuse, so she has purposely come round and asked him. I think it’s the guilt he would feel if he hadn’t have gone.
I’ve said to him about groups but his response was “I don’t want to talk about my illness with strangers and I don’t want to know what my future holds.” He was reading things on line, but he said it’s all doom and gloom. I said you’re reading the wrong things and all I get is what do you know?
Hope you both have lots of support, family, friends to help you both through. Take care x
Hugs to you both,
Hi @Wiz
I’m so sorry for your loss and feel so gutted for you with your diagnosis. Must have been such a shock. It’s a cruel world sometimes.
Yes arguments seem to be a recurring thing atm. Never argued with my husband really before his diagnosis. He’s out with My daughter and grandson atm. He never says no to her. She said she’ll talk to him if the subject comes up, we obvs don’t want him to think she’s come round to moan at him. I’m sitting back for a bit, not saying anything, letting him get on with it. Giving him and myself a break.
I keep saying we only get one life, I feel he’s just letting Parkinson’s take him, he’s just given in. He doesn’t ask for help from anybody.
The future scares me, he’s like this now and he’s only in the early stages.
Thank you for your reply, please look after yourself.
Good morning Lost … You ask some interesting questions … I have been a very active sportsman all my life. In my early 60’s I played a number of sports at international level for men in the over 60 age group. I participated at European championships for my country. I retired from active sports due to a troublesome knee [since operated on & now in perfect working order] but I’d made that decision & was happy with it.
Then I threw myself into playing golf nearly every day of the week. I lived in Florida during the UK’s Winter months & in the UK during our Summer. So I’ve been very fortunate. Then Parkinson’s reared its head & I had to give up golf totally. It was a gradual process over a few years. I could physically play less & less even riding in a golf cart. I find I shake during stressful situations & of course putting is stressful & it became impossible to putt the golf ball into the hole.
So I started playing Indoor Bowls. I play in a number of leagues & play for my club in inter club matches. It amazes me that I can play as well as I do. If I was not competitive & could play well I would give up.
At my Bowls club you put down your availability & I get picked for most games. If I did not have this obligation to play I would not play as I usually don’t feel up to it. But often when I do play & play well then on looking back I conclude that I have enjoyed it.
For me & Parkinson’s there is very much a physical disability & an equally strong mental disability. I sometimes feel unable to do anything bar lying in bed as this is where I am most comfortable. As I said I can’t stand still for more than a couple of minutes & I also find sitting in a chair or car seat incapacitating if I do it for too long.
Too long & my “freezing” takes over.
Socialising is difficult for me. Having people watch me eat is a real NO !!! My fork-full
of food falls off just as it gets to my mouth & my hand arm shakes so much that I often miss my mouth entirely. The same can happen with drinking a cup of tea or coffee as I often spill most of it.
Also when I bowl my balance is sometimes not so good & I can feel everyone watching me in case I fall over.
So socialising is difficult & something that I have to force myself to do by committing myself to play way in advance.
Taking our medication is an interesting topic … I am supposed to take 16 pills a day but I only take 12 pills a day. When I stop taking a certain pill I do tell my doctor & we discuss it. That is a good way to get things done I have found. Within 10 days of my saying I was stopping taking my Beta Blockers I had an NHS appointment with a Cardio Consultant & alternative medication has been prescribed. So I understand your husband’s reluctance to take his medication.
I have no family & no real friends, but a few good acquaintances made through golf & bowls. Living on my own is so less stressful than living with someone & I have my freedom to do what I want.
Off to today’s bowls match. I hope I win [that’s my competitive side coming out].
Best wishes
Steve2
Dear Steve
Thankyou so much for your message. It is really good to hear from someone who is experiencing this (awful!?) condition. I am in the position where I feel it’s my duty to be a total nag and also to leave him to it so I can keep myself happy. I do my best but I really want to fix him which I don’t think will happen really. Will look for more posts like yours… thanks again.