It’s been an age since I last got in touch, but, so much has happened.
I’ve been diagnosed for eight years now and am actually doing really well! I play acoustic guitar, which not only is really therapeutic but also helps enormously with movement.
But, that’s not what I’m writing about.
After thirty years of marriage I am finally having to throw in the towel! My husband has been unbelievably unsympathetic to my problems and has continually undermined everything I do. He gets very very frustrated with me which ends up in him losing it altigether! This I have put up with for many many years, but, unfortunately, I can no longer tolerate his behaviour.
I am having to leave our home, which I love so much, hopefully on a temporary basis and move to rented accommodation, until such time as things are resolved.
Have any other members had the same problem?
This is the most devastating thing Ive had to do and at 62 not easy. But, time marches on and I have got to think of myself from now on.
So sorry to read that you feel you have to leave. Yes, it is devastating as it means you have to give up all those hopes and dreams, of living happily ever after.
I’m now 62 and was dx’sd 6 years ago. Hubby has not come to grips with it but gets frustrated with any symptoms that cause lack of control in the household or slow him down.
Now that I am on levodopa as well as the pramipexole, I can get distracted at the drop of a pair of stamp tongs. Also, as I am reacting to things in the moment, I am likely to forget to… lock the front door, turn certain lights out, etc.
After 13 years of marriage, he has had enough and no longer asks what I said when he can’t hear me. Also, my forgetting to do things has now morphed into capital offences, and he loses it.
Once I read about borderline personality disorder, I was able to relate his behaviours to it. He is not diagnosed but if I treat him as though he has it, things do not escalate like they did.
There was a time this year when I thought I might have to leave (he was mentioning it in various nasty comments) but I have told him I’m staying, and have changed my lifestyle to be more at his beck and call, as he noe comes across as needy.
Yours sounds like more of an unsympathetic grouch, whereas mine went downhill mentally and had a kind of a breakdown which brought on these behaviours.
I wish you the best of luck. Take care.
Hi, good for you girl, if your husband doesn’t want to support you then I think you are doing the right thing. I bet if it were him you’d be supporting him! What do your family think? Hopefully they support your brave decision & are helping you out. I’m sure he’ll realise what he’s lost when you’re getting on with your own life & he’s sitting at home staring at four walls. Well that’s my rant over now. Ps Happy New Year & all the best for the future brave lady.
Thanks so much for your encouragement. I tell you, at this age, I think I must be crazy, but, I know I’m doing the right thing.
My family have been great. Friends, however, a mixed reception, but, to be honest, I’m really not that bothered about their response.
Hi Rhona ,
You sound like one extraordinary person . I admire your bravery in taking such a decision with all the uncertainty and upheaval that it entails, and am minded of a Mary Oliver poem which you may know…I don’t have it to hand at this hour of the day (night?) but will find it later and post relevant lines.
I am sure that the Universe, for want of a better word, will provide what you need in terms of energy, support and friendship, so long as you are prepared to find it in unexpected places and not necessarily from those you would have expected to be there for you…or “should” be. .
I wouldn’t underestimate the emotional challenge of separating from someone you have been with for so long . Whatever a relationship is like, good or bad or both, deep bonds are formed and the severing of those, however necessary , is hard and painful, even when it is exactly the right thing to do… It can feel very strange to do what is right and yet feel grief and maybe doubt about that decision. I hope you will be able to remember some good times together at least, or sift out what has been good in that relationship, so that not all is lost or regretted, though that can be hard when so much has not been okay.
As with so much to do with Parkinson’s, your words speak of loss…loss of hope and trust and love and dreams and, and…I wonder whether the impatience and anger of carers ( I speak as one) stems as much from their sense of “this is not fair…this is not what I bargained for…I’m not up to what this demands of me, “ etc. Just as for the pwp.
Your words also speak of hope ( hope triumphing over experience), and the conviction that you deserve better , as you do, and should not be treated so badly., and that will surely give other people in similar situations the courage to do likewise
Sorry if I have gone on a bit…good luck and best wishes,
That is the most heartfelt message you have so kindly sent through to me.
I am deeply touched by it.
Good morning ! I don’t know if you can get through on this link, but if not, the title is there. I keep returning to it.
Warm regards, Pippa
Hello Rhona, just want to say I echo all the comments made. We both know that having made this incredibly tough and brave decision, life won’t suddenly be easy but you will be living life on your terms and being true to yourself and I am sure that will give you strength to make a successful life for yourself which ultimately brings you peace and happiness. I do hope so.
Thank you so much for your reply.
It’s very much appreciated.
Thank you, Pippa.
Yes it’s come through and just about crosses all the ts and dots the is.
It’s beautiful, thank you, especially now as I sit in my hotel bedroom wondering what I’ve done, surrounded by luggage!
Fortunately I’m a very positive person and know without doubt that I am doing the right thing!
Hello Pippa, just wanted to say I agree with your thinking re carers. In my experience most people willingly take on the carer role and in the early days (and I am generalising here of course, it won’t apply to all) manage well because the person they are caring for, whatever the condition, ‘isn’t too bad’ and life doesn’t change too drastically. What is often hugely underestimated is the impact of medium to long term caring - the role becomes evermore complicated as the condition deteriorates, the balance in the relationship changes and often one person has to make the decisions and that can be a lonely place, the treadmill of routine you can’t change, and the sheer fatigue it can generate etc; all these sorts of things and more. are coupled with as you said, it’s not fair, etc., and it can be a role carried for many years. I always think the caring role in many regards has to cope with loss that is every bit as strong as a bereavement but the person hasn’t gone. He or she may have changed so you are not caring for the same person, they may look the same sound the same but … Emotionally, physically and every which way, taking on the caring role is tough and many first timers have little idea of the enormity of their undertaking. Of course, some people manage perfectly well, it is not all bad and some wonderful memories and a lot of laughing often feature. My point is many have no idea of the physical, social, emotional and psychological price they pay, perhaps that’s just as well; I do know I couldn’t do it. I like to think I could, but I know I can’t, not for the long haul. I’d have to find another way.
Hi Rhona, my thoughts are with you, tonight is going to be hard to get through and I pray you get to rest if not sleep. You have to look after yourself in circumstances like yours. No-one but you will know the full circumstances.The night I left my husband of twenty three years, due to his unreasonable behaviour, I cried myself to sleep. One of the hardest things I have ever done but I do not regret it, as hard as times have been over the years (not health related for most of it until well after we were divorced).
I have never wanted to even date anyone since - let alone find another partner.
He had no health issues , neither of us were in the caring role apart from as parents. However it hust came to a point where it was leave or have a breakdown, so for my own health I had to get out (with my school age daughters). So different circs but similar story, he could be a total pig (to be polite). I know from throughout the marriage that he saw me as a hinderance to his life and an embarrassment, and everything I did was wrong - right down to getting promoted before him in similar types of work!
I have rambled but basically saying that being in the role of carer cannot neccessarily be blamed for the splitting up of a marriage, there surely must be underlying existing problems, maybe wallpapered over but the damage is there.
Sending hugs x
Thank you Rose,
Yes, I’m wide awake but managed to get a little sleep. As you say similar situations, my husband has underlying issues, bless him, but I gave up trying to get him to address them. As they say, you can take a horse to water etc, etc,
This is another of MO’s poems which you may like and find helpful ( such a prosaic word for what I really mean) .what an extraordinary gift she has …
Even better , hear her read it on YouTube …she looks and sounds exactly how I imagine someone of her sensitivity and soulfulness to sound and look. I find it strangely and wonderfully reassuring that there are people like her on this planet. A gift to us all.
I can sympathise and understand the fact of you separating I was diagnosed in 2013 i have been married for 27 years and my wife although trying to help did not really understand my PD changes and issues. Its taken 3 years for my family to understand and come to terms with my PD I became isolated and frustrated because everyone didn’t understand simple PD problems especially with my fine motor movements eg trying and failing to open jars and bottles etc their answer was Dads copping out using the PD which made me more frustrated
My wife continues with her lifestyle and friends which helps her but isolated me further I felt abandon and alone but i battled on mainly due to a young family and sheer determination
I also play guitar and i have recently taken on the challenge to the bluegrass banjo i also paint and i. do not tremor at all which is really strange plus ive learnt to enjoy my own company.
The family plan when i retired 2 years ago was to move to Spain where the heat and lifestyle and diet help alleviate all aspects of PD but my wife refuses to go due to my all be it Mild well controlled PD symptoms and if i am openly honest i think it was never on her agenda.
We sat down before Xmas and had a honest talk and separation came up it felt good for both my wife and i to clear the air. I now move forward with my own dreams I guess what i am trying to say is you need to keep your dreams alive regardless of the PD i don t really know where my relationship goes in 2019 but i continue to look at Spain has my dream good luck with your future perhaps its time to create and follow your dream hope this helps
Thank you Dave
It seems we’re both in the same boat!
Time, as you say, to move forward and not look back.
Easier said than done, but it sounds as if we are similar in character. Determined not to let PD get the better of us.
I find music and the guitar an incredible release, as you can get lost in your playing. The more you play, the easier your movement becomes.
So, time to move forward and although we remain good friends, time to let go of the past.
Thank you for replying,
I’ve been where you’re at. Wont tell you it’s easy it took me three years to finally come out the other side but feel so much more confident now. I was diagnosed September 15 and found out he was cheating on me 2 months later 25 years marriage down the pan. I’m 60 and partying with new girlfriends that I wasn’t allowed to have when I was married I am hardly ever home and have a diary for the first time ever. There is light at the end of the tunnel. I will just give you a bit of advise don’t get the solicitors involved until you and your ex are in agreement on how you are going to split the assets. They love to bump up the costs by getting you to fight. I had a lovely solicitor I explained that I had PD and had to avoid stress. She made sure his solicitor done all the work keeping my costs down. I wish you the very best
I’m so sad to hear, and read, all about your situation. As a carer to my mother I can say that the past 6 years have been hell for me. However, I’m a committed and faithful Christian and I believe that my belief and faith in God’s grace has given me the courage and strength to stay and commit to my mother. She was not ever an easy person; I was abused and she shunned me. She’s been cold and indifferent to me all my life. When father died she lost her main carer so she fastened onto me because she was terrified of having no one and she did not want to leave her home. I have cried out in frustration, fought against my own feelings to run as far away as possible from her, but have stayed only because I’ve prayed and been answered and cared for by a gentle and kind God. I truly believe this because I know that I could NOT still be here without this faith. I’m a widow and am now housebound with mother who has stage 3 PD and dementia and other symptoms of her PD which she has had for over 30 years. We have no support from the family except when discussing mother’s assets. Your situation is a tough one too and sadly you must leave your home temporarily. But I hope that with the courage I know that you have you will overcome this obstacle and leave this man feeling very guilty for the rest of his life because he treated you this way at your most vulnerable time. I’ll pray for your safekeeping and for a happy outcome in your favour … I’m 68 and understand what it’s like to be facing being alone or making big changes. Take care of yourself.