Marriage could be over

Living with Parkinson's Carers, friends and family
1

HI im looking for some advice as  i am desperately tying to save my marriage

When i meet my wife 10 years ago i was  a very difarant person  to who I have become happy, adventurous , independent , thrill seeking ,loving,  i even had my own business and although not perfect the relationship was good.

A few months after the birth of are 3rd child i was diagnosed with PD .we were both devastated ,my wife had wanted a forth child but after my dx I was scared  for  are future and the pressure on my wife so i had a vasectomy  wich I sometimes regret.

I continued  to work up in till 21/2 Yeas ago when i just  fond It to hard to continue.

Since quitting work  we have both had depression  and i have had mood swings, fatigue ,a loss of interests i my  wife myself and most  other things , we do not communicate well,and i fill like i live in my own  bubble.

6 weeks  ago my wife said she wanted a tryel separation and counseling but after 3 meetings wants to  separate permently.

I was 39 when  dx

Thanks  for reading

 

2

I don't know the details of your situation and the following may be irrelevant or inappropriate but here goes anyway- 

You have lost interest in everything and live in a bubble. Obviously you have to prick that bubble. Only you can do that. Even though you don't want to and its difficult - go and do something. Right now. Go and get a haircut, buy some new clothes, get a take away, visit the zoo, enrol on a course, get a part-time job, .Life can never become interesting again unless you go out and meet it. Make a list of things to do out of the house and do at least two of them everyday. 

good luck

3

 Hi my circumstances are  almost identical  to yours . we have three girls all under 5 I don't work anymore but luckily my wife does. I am 41 and was DX last year. Recently we were very close to separating but so far we have managed to save it. I totally understand where your coming from having this pd is a nightmare and it does consume you and that is all you can think about. I hate being the man I am now and do get very depressed at times. My wife who is very supportive does also find it very hard. I think she finds it harder than me sometimes. Do you know why your wife has suddenly decided she wants to permanently separate is she being completely honest with you? do you go to counciling separately? Do you get time just for yourself even if its only an hour. Although I have a loving sister and good friends they don't really understand how crap it is to have pd. I don't really have any advice for you I just wish you luck and hope you and your wife can get through this. The pd isn't going to get easier you just have to make the most of what you can do.

Good luck my friend.

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4

Do you have a consultant and are you under the care of a GP who knows you and your Parkinson's? If you have a local Hospice, they usually have a "Day Hospice". This isn't necessarily for people with a terminal illness and it isn't just for Cancer sufferers. They take Parkinson's sufferers and people with other clinical needs. You can go one day a week, usually 10am - 3pm for a set period (around 16 wks) They will also offer a week's respite if you require. What I  am saying is, it would be a break for you both. In my case it is my husband who has PD. Our GP referred him and we were fortunate to be offered 32 wks "Day Hospice" (not like an old folks home!) and also a weeks respite care. It was very beneficial to us both. My husband enjoyed it and I was able to have some time to myself. It's called "getting outside the bubble".  Please think about it. You will find some very nice people there. Ask your Consultant/GP to make enquiries on your behalf. Best wishes.

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                   Hello Ciderred

                             Your words struck a very worrying chord with me,PD completely changed my personality and the drugs made things much worse for three or four years almost breaking what is now a very strong and flexible bond between my dear wife and I , the unescapable fact here is your wife wants out and once the mindset is in place to this end, its very difficult to reverse course, I suppose what I am saying is does she still love you there lies the answer, either way by suggesting time apart the whole situation is heartbreaking, and  you Sir have to use every trick in the book in order to rebuild your relationship , a massive task when BLACKHEART is sitting on your  shoulder.

                 I wish I could erase all your worry and pain Sir , its now you must fight hard, harder than you

                        have ever fought in your life, I wish you well

                                      Kindest Regards  Fed

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cool

         Hello Cidered

                           It  was June when I last contacted you, I was wondering how things are, having gone through exactly the same pain as your  self I  am a lttle concerned as we dont seem to have heard from you.did your Lady abandon the relationship or are you stronger now because of it, i sincerely hope so, It has worked for me my  wife and I now have a very stable outlook and  she    really  is the best thing that ever happened to me, we  work together with the removal and re-installation of DUOdopa which I  cannot do  especially the re install part as I am almost 90% shutdown in the morning, and so cannot maipulate the assembly processes and restart, anyway I suppose im saying the situation can be managed, over the last yer or so we have had some scary moments, almost  losing my lovely wife, but as we knew  we were in a minefield of terrible consequences we realised that if we did not slow down , pace ourselves and start rebuilding we were doomed, the latest  silly  example of "how to weck a marriage" was only a week or so ago and it  was all my fault, reading things which  simply were not there, I am alo becoming very jealous, and anyone who even looks at LB is quickly dealt with, this is casing a bit friction and I know  I must stop this childish behavior or it will damage us, she has proved time after time her loyalty to me is rock solid, and I  hope you sir can say the same,

                                             Kindest Regards                      FEDcool

7

I also find myself as a carer of a 48 year old man with PD diagnosed some 5 years ago, feeling that there is little left in our marital relationship.  We parent our children, pass the salt but precious little else. We don't have eye contact and his face is not of the smiling happy man that I married but 'mask like' and his personality has changed.  I cannot imagine how he feels and he does not discuss how he feels with me, he shows no interest in me at all although I put his needs first.   I am also very frustrated that I not feel that he puts our family first but jumps to attention for his brother who I feel does not support us and in fact antagonises the situation by not visiting us or offering any practical help and just appears to be interested in his inheritance and tryng to make sure our children do not receive theirs.  His wife, a devout Catholic, having taken a distinct dislike of me and not wishing to have any contact with me other than formal occasions for example funerals where we both put on an act.  My husband's memory is getting worse and he thinks very concretely, in black and white.  Sleep is vey difficult for us both as he comes to bed very late and is very restless sometimes throwing himself out of bed and I am a very light sleeper and once awake find it very difficult to go back to sleep which he does immediatlely. I don't know how much longer we can go on with this, living together but separately.  I cannot bear to think of the future. Reading this through, it all sounds very selfish from me as I am not actually the person with PD but we both live with it and its disasterous affect on our lives, every day.

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Hi Ry Gard. I understand much of what you say. Day to day life is often a lonely and sometimes frustrating. Hubby very habitual and gets annoyed if do not conform to his standards. I totally understand the sleep problem and your reference to 'almost throwing himself out of bed. I had to do double take as I didn't think he coukd move so quickly! Very disturbing for partners though! This is no joke though, like you I wonder how long i can go on in this relationship - daren't look too far ahead, too scary. If you feel like writing back I'd be glad to hear from you. When i consider leaving i feel so very guilty.
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My husband has been diagnosed for about 5 years and there have been many rocky times. At one point I felt so unhappy, couldn't sleep, but kind words from Hull victim , on the forum helped me. It is difficult to deal with mood swings, the need to be in control, or he doesn't cope well, and sleep problems. We have separate rooms now, otherwise I would be covered in bruises, something he would never do if awake. He has hurt himself during these times but medication from his neurologist has helped a lot.

   So many times I have heard myself say "I am sick of hearing about Parkinson's"   BUT    now I am an undiagnosed with Parkinsonisms. I have a neurology apt next month. We never know what awaits us, Parkinson's is an awful condition,  and as a carer I haven't always been understanding but there is so much support on here and local PD groups.flo

 

10
Flo so sorry to learn of your problems and very much hope your suspected PK is unfounded. I do have much sympathy for the condition but my husband refuses to talk about or the future so it is difficult not to worry. I get that he doesn't want to face it, who would! So I go along with same philosophy of taking each day as it comes. As you say, you never know what's ahead so living for the day seems to be the best way to live.
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Hello idle wild. I think you need support, I know I do. This is where the forum is so helpful, PWP, friends, family, carers, at times you feel as if there is nobody to talk to who understands. And the guilt you feel when faced with behaviour that you don't understand and probably the Person with Parkinson's doesn't either. Things can get heated and things are said that are regretted later.

  Occasionally my husband will let me into his fears and worries and I can understand a bit more. But when they are angry with PD who is there to shout at but us. Keep posting,  idle wild and looking at the forum, flo 

12

 

It is very difficult being a carer as much as being a parkinsons sufferer. I can sympathise in both cases. I am the one with parkinsons and wish I wasn't afflicated with this disease, but I'm stuck with it no matter what, I have to make the most of it. It's frustrating at times when you try and do something for yourself and can't, I feel so reliant on my OH even though deep down I don't want to and hate it. I miss the happy smiley person I used to be, and I'm sure my hubby does, but we married for better or for worse, in sickness and in health. He also gets frustrated at times,I know he does by the way he speaks to me sometimes, but we take it all in our stride. We have good times and bad times, but some of the love is still there. Do try to understand each other and take a day at a time and try to forgive and forget.

 

All The Best

Love Sheffy

 

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cool

   Hello cidred, reading yours an the sprinkling of replies of our friends, it brought back so many painfull memories . I loved my wife no 1, she was good looking and a very sexy slightly plump our marriage lasted 9 years, her parting words to my shattered into millions of fragnents, was "you have changed.I DONT KNOW YOU ANYMORE", THAT WAS winter 79, which was a bad one for Northumberland, now remember this was 79, the first hours of 79 actually, I had taken our Daughters to my Mums as it was  N Yrs Eve, a time for renewal and for me ,I hoprd the building of bridges and for a man alone, the fervent wish that my lovely wife would say "ive made a terrible mistake can we try again", so as I said  ny children were safe and when I  lightreturned to our home to park our little Vauxhall Viva as I was very strict about not drinking and driving, so the car in the drive I went inside, the lounge light was on and the TV was blareing, which masked other sounds, but my hearing was a lot better then which thinking back I wish It hadn't been, the noises, and laughing were coming from our bedroom, I was both terrified horrified and filled with revulsion as I quiety walked across the landing and opened the door just enough to see this giant of a man having sex with my ex,Im not trying to be silly here,IN FACT I OVER HEARD THIS BLOKE SAYING, AND I QUOTE, ME AND JOHN WILL BEAT HIM UP AND LEAVE IN  THE DITCH. HYPERTHERMIA WILL DO  THE REST.. my wife just laughed and told him to  ????her some more    and mmmmmmmmmmmmmmmmmmmmmmmmmmmre I was listening to the person I loved more than anyone in the world planning my murder. , this thug was a twin, and both of them had served time in ACKLINGTON H,M,P ACKLINGTON TO GIVE THIS AWFUL PLACE ITS CORRECT TITLE, and I knew he would carry out this threat, so I was reluctant to burst into the bedroom as I know I would be on the losing side, by now it was snowing very hard and I decided to visit one  of the few reliable friends, he was rtrd S B S, HARD AS NAILS  and I thought he was my friend, but  he said " get  off the streets D??????D NOW, IM SORRY I CANT HELP" AND SLAMMED THE DOOR. BLIZZARD CONDITIONS NOW AND BEING A 29YR OLD GEORDIE, I WAS IN TRADITIONAL GEORDIE PLUMAGE WHEN OUT ON THE TILES, (ALL WEATHERS)  A WHITE SHORTSLEEVEDSHIRT, try saying that after a dram or 12, well I knew I could not go home , and my heart was breaking, the bitter, IT WAS MINUS 25C WITH  WIND CHILL

 I WILL HAVE TO COMPLETE THIS SAD TALE LATER AS WE HAVE A VIP ARRIVING ANY MINUTE, YOU WILL UNDERSTAND THE RELEVANCE WHEN I RETURN  FED

 

14

H.i everyone,

Im a PD guy married 46 years now.It isn't a bed of roses with my wife and me but I do have a winning philosophy.I have been involved with dr. abraham Low group now 20 years.He wrote a book called Peace over Power in the Family.Lots of help there.My wife still has not accepted my PD.She will some day im sure.

Marriage is like a ocean. Sometimes a storm arises and a good captain will ride out the storm.Most people who have trouble and want to "flee"are reacting to their nerves not there characteer.It's a very powerful feeling hard to resist with only patience to cure.

While some who have short marriages and no bond in children this might be very hard.I only offer hope.

That's the thing that greets me everyday when I rise and start a new day.

I have read many stories here and see your enemy which is also mine.When people don't react to our expectations we have temper which leads to emotional upset or"waves".Reluctant "spouses"have fear like  us.I use to be jealous husban also and itis another form of temper.Soon after you know your enemy well hope returns and life even with PD can be bearable.

I hope this helps.

John

 

15

Hello,

This PD is crap I agree wholeheartedly but please do not let it win I was dx in June 2013 age 47 suspect it was triggered by shoulder surgery see post (HANDS UP WHO HAD SHOULDER PROBLEM BEFORE DX WITH PD) there are some very good counsellors out there through the uk who can help with depression your GP just needs to referee you and they are available on the NHS.

This PD needs to be kicked into touch which I know is not easy but otherwise it will consume you and take control of your life. I fight this both mentally and physically my hubby is struggling more than I am with my dx but we will stand strong against it because there is no other alternative we still love each other very much so I will continue to fight this crap.

Go out for a walk , breath in the fresh air, talk to each other be honest about your hopes and fears and have a few tears crying will release your tension if necessary get some anti depressants if your sleep pattern is out of sync go to your GP you can get the help you need but you have to ask. I am stuck on sleeping tablets but at least i now sleep 5 to 6 hrs per night before the sleepers I was lucky if I got 2 hours. I have recently been made redundant but I will find another job because this crap will not win I will not let that happen.

It is like a grieving process for some of us pre PD & post PD and you need to accept that. We all have good & bad days it's how you manage yourself that will predict the life you now have to live. Check this Website out to see if you have a local support group don't be scared that all the members are old I thought that and was proven wrong much to my relief. My branch is Lincoln & District and I am the youngest member but I value all the new friends I found without the group I would have gone crackers.

I wish you all well and for your loved ones to understand & support you, live you life to the full as much as possible. Fight for yourself !!!!!!!!!!!!!!!!!!!!!!

Kindest Regards BB xx

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PD is no excuse for losing control.No sympathy for those who exercise their bad tempers.

 

Many years ago I trained myself for getting control of my temepr.people can gain control ,yes some drugs like the agonist sure can make us irritable and worse,stay away from them

My sympathy for the victims for sure if your spouce acts out make sure he or she is not on a bad drug

 

17

Do not need to pull if everything is bad
I had the same situation
ended up very badly, broke up, and I was in a rich family, a big piece of business left with my partner, now I'm a little sorry that I made the wrong choice
and even if everything is bad, do it right through the lawyers
here by the way saw a lot of photos on this topic, you can check out take

18

I have both degenerative spinal stenosis and PD. When my wife and I got tgether we enjoyed a massive sex lfe and all was wonderful. The Stenosis put paid to any bedroom shenannygans and PD finished the relationship off forever. My wife has already found another partner. As I write, I am in the midst of packing, as I must now leave and make way to him. Its a most depressing time. But I think its important to look forward, be positive and see what tomorrow brings. I can’t blame her, looking after a man who is essentially an invalid has to be the pits. But I’m not taking any blame, I did not choose this life. To anyone else losing a partner I say, You are not alone, not unique. Be positive, you dont know what or who waits you…

19

Don’t give up
On the 27/7/23 I will be marrying one amazing lady and life is so different to what it was and if you had said I would have been in this position back then when everything was dark I would not have believed you but here I am. I got myself assessed for a DBS trial a bit scary but what’s to lose Then I met Angela . I look back now and I can see that she has made more of a difference to how lief is working out than the DBS not that I am ungrateful for the DBS because it’s life changing and I would recommend it to anyone with PD that is suitable. For the operation . We met online and after physically meeting . She moved down to Bristol from Glasgow . I told her from the start about my PD and she has seen me off meds and my 3 children all get on well with her to I’m of to work on the wedding cake now and will post again after the wedding take care all and if you are having a bad day you never know what tomorrow will bring

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