Dear Maddieraz,
You say there is a question of whether your partner should move to sheltered housing nearer where you live, away from his old network. The risk is that could leave you feeling trapped in the relationship, or feeling guilty if you break it.
Would you be willing to move to be closer to him? If the answer is ‘no’, I don’t think you should encourage him to move. You could just keep going as you are, and maybe with time the answer will become ‘yes’. If it does, great, and if it doesn’t, then you will have saved both of you a lot of heartache.
All the best,
Marie
Dear MarieL
Thankyou so much for your advice. I wish it wasn't too late for me, but I think it is. Whenever I read this forum I am so impressed by the patience that various carers have and are showing, while dealing with behaviour that would surely end a lot of marriages with non-PwPs. How did you put up with a non-life for so long? It makes me feel so selfish, but I'm in my early fifties and there is so much I want yet to do with my life.
One of the problems in our relationship is that my husband refuses to accept he has PD and will not discuss it or do anything much to fight it. He's had a bit of physio and speech therapy (as he's becoming inaudible) but won't do the exercises etc. So I can't get him to specialists; he doesn't see that he's changed and has been very wounded by me pointing out that he is different now. I think after we separate I can still help him, but I can't live like this anymore. I asked him last night why he broke his firm promise (in a heated and very important conversation) to end the other relationship, and he said he couldn't remember having the conversation. So what can I do? He doesn't take responsibility for that either. You are all so wonderful. I shall keep reading the forum.
Thankyou so much for your advice. I wish it wasn't too late for me, but I think it is. Whenever I read this forum I am so impressed by the patience that various carers have and are showing, while dealing with behaviour that would surely end a lot of marriages with non-PwPs. How did you put up with a non-life for so long? It makes me feel so selfish, but I'm in my early fifties and there is so much I want yet to do with my life.
One of the problems in our relationship is that my husband refuses to accept he has PD and will not discuss it or do anything much to fight it. He's had a bit of physio and speech therapy (as he's becoming inaudible) but won't do the exercises etc. So I can't get him to specialists; he doesn't see that he's changed and has been very wounded by me pointing out that he is different now. I think after we separate I can still help him, but I can't live like this anymore. I asked him last night why he broke his firm promise (in a heated and very important conversation) to end the other relationship, and he said he couldn't remember having the conversation. So what can I do? He doesn't take responsibility for that either. You are all so wonderful. I shall keep reading the forum.
Dear MaddieRaz - I think MarieL's advice to you is brilliant. Whatever you do, don't get into a situation where you feel trapped. You will be no good to anybody. Relationships can take many different forms and be conducted at many different distances and with differnt time involvements. But feeling trapped, and feeling suffocated, are terrible states of mind. You can be sure that people will sympathise if you complain about it, but they won't be able to relieve you of that feeling. It might finish off a good relationship.
SURREY DREAMER:
DID YOU READ MY POST ABOVE? IT ISN'T NECESSARILY TOO LATE FOR YOU. ALL OF YOUR PARTNER'S MASSIVE PERSONALITY AND BEHAVIOUR CHANGES COULD BE BEING CAUSED BY HIS MEDICATION.
A CHANGE IN DRUGS COULD HAVE HIM BACK TO HIS NORMAL OLD SELF IN A COUPLE OF DAYS - HONESTLY! GIVE IT A TRY, TALK TO YOUR CONSULTANT. GET A 2ND OPINION IF NECESSARY.
THIS SITUATION IS REALLY COMMON WITH PEOPLE TAKING DRUGS FOR PARKINSON'S, YOU WOULD NOT BELIEVE HOW MANY PEOPLE HAVE BEEN THROUGH WHAT YOU ARE NOW. NOR WOULD YOU BELIEVE HOW EXTREME THE CHANGES CAN BE.
DON'T GIVE UP!
MERVE.
DID YOU READ MY POST ABOVE? IT ISN'T NECESSARILY TOO LATE FOR YOU. ALL OF YOUR PARTNER'S MASSIVE PERSONALITY AND BEHAVIOUR CHANGES COULD BE BEING CAUSED BY HIS MEDICATION.
A CHANGE IN DRUGS COULD HAVE HIM BACK TO HIS NORMAL OLD SELF IN A COUPLE OF DAYS - HONESTLY! GIVE IT A TRY, TALK TO YOUR CONSULTANT. GET A 2ND OPINION IF NECESSARY.
THIS SITUATION IS REALLY COMMON WITH PEOPLE TAKING DRUGS FOR PARKINSON'S, YOU WOULD NOT BELIEVE HOW MANY PEOPLE HAVE BEEN THROUGH WHAT YOU ARE NOW. NOR WOULD YOU BELIEVE HOW EXTREME THE CHANGES CAN BE.
DON'T GIVE UP!
MERVE.
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Dear Surrey Dreamer,
I totally agree with Merve that most, perhaps all, your husband's problems could be down to the drugs (or lack of). BUT if he refuses to get treatment, what can you do? Does he really understand how close you are to leaving him? Would it make any difference to his attitude?
All the best,
Marie
I totally agree with Merve that most, perhaps all, your husband's problems could be down to the drugs (or lack of). BUT if he refuses to get treatment, what can you do? Does he really understand how close you are to leaving him? Would it make any difference to his attitude?
All the best,
Marie
Thanks everyone. Yes, I knew some of the symptoms might be meds-related. We saw the neurologist yesterday and he is reducing the Mirapexin. He thinks my husband has a PD-plus variant, and he has put him on rivastigmine (dementia drug). Right now, we are in a bit of a state. I am not brave enough to continue, and I know his symptoms may improve for a time but it is all so very painful now that we have acknowledged the dementia. Thankyou for your support. Maybe another day I might feel a bit more optimistic but it's deserted me at the moment.
Hello. Surrey Dreamer your experiences with your husband are so like mine and I have been desperate to talk to someone in a similar position so have joined the forum to contact you. Unfortunately your details show that you do not receive private messages. I would rather not go into details on the forum so if you change your mind and want to contact via email I would be very grateful.
I keep telling myself I am dealing with a condition not the man which actually doesn't make things any easier. It is emotional and mental torture, until recently I thought I was going mad. My partner is very clever, eloquent and charming when he is at his best, I can forgive him anything but when he is bad he really is bad and has me believing I am the baddie.
I have distanced myself to a degree, only seeing him at weekends. During the week I go to work and relish the quiet evenings to myself.
A slight change in medication has certainly made a difference but I fear this is only a temporary lull.
I have distanced myself to a degree, only seeing him at weekends. During the week I go to work and relish the quiet evenings to myself.
A slight change in medication has certainly made a difference but I fear this is only a temporary lull.
AddledBedraggled thank you for your honesty. Your words may sound brutal to others but you are right, we do not have a lifetime of happy memories stored up to get us through the bad times.
I will think carefully on your words. I have to decide sooner rather than the later what must do. I think I have already made the decision I guess it's just the manner in which I deal with it.
I will think carefully on your words. I have to decide sooner rather than the later what must do. I think I have already made the decision I guess it's just the manner in which I deal with it.
Maddie, whether or not you end up staying with him long-term, if the guy's behaviour is still abnormal he needs a complete change of drugs. Tweaking dosages and timings isn't enough.
Patients are not obliged to take the medication recommended to them, they can insist on a different drug regime unless the consultant can offer a good reason why not. They also have the right to ask for a second opinion, or to change to a different consultant if not satisfied.
He deserves to be at least given the chance to switch to an alternative medication structure, and if YOU leave the scene before this happens who will he have to fight on his behalf?
I think you've probably already decided you want to split up EVEN IF a change in drugs were to resolve everything and return him to normal. He'd obviously still have the condition, and will gradually deteriorate over the years ahead.
Although he used to be a nice chap, I don't believe your relationship was ever as strong as it would need to be for you to dedicate the rest of your life to him.
Keep us updated.
Patients are not obliged to take the medication recommended to them, they can insist on a different drug regime unless the consultant can offer a good reason why not. They also have the right to ask for a second opinion, or to change to a different consultant if not satisfied.
He deserves to be at least given the chance to switch to an alternative medication structure, and if YOU leave the scene before this happens who will he have to fight on his behalf?
I think you've probably already decided you want to split up EVEN IF a change in drugs were to resolve everything and return him to normal. He'd obviously still have the condition, and will gradually deteriorate over the years ahead.
Although he used to be a nice chap, I don't believe your relationship was ever as strong as it would need to be for you to dedicate the rest of your life to him.
Keep us updated.
I agree with Merve.......PD does take a toll on a relationship, but in many ways it is a great "test" for a relationship as well....are you in it for the "bad" times as well as the "good"....when a partner is battling a disease like this, he is bound to falter in many ways and not be the same exact person as he was before the disease came into play.....don't fool yourself or him by staying in something you are not totally dedicated to for good or bad, sickness and in health........
Agreed. I'd say it's IMPOSSIBLE to look after a PD patient unless you're totally dedicated to, and besotted by, them. Normally this would need (I reckon) the pair of you to have lots of good memories of joint companionship when you were both healthy together.
This is the email I got when I needed time to put the relationship in perspective. This is an example of similar that I have received over the months. This sort of thinking has been attributed to the medication but the meds were adjusted so what do I attribute this to.
Dear
As I said, very neat of you to use me as much as possible, then get your keys back and tell me that you didn't want to see me again, as soon as you could not see anything you needed from me in the future. I will be writing on the Parkinson's forums about the dangers of meeting people with your type of personality disorder.
Also. the way you blamed me for your "depression", "I am depressed, because YOU have Parkinson's disease", was classic. This is typical behaviour, luckily I recognise it. I suspect that you are "depressed" because your re-invention e.g. running, no alcohol, detox diet etc.,hasn't reaped the rewards you expected, although I get the feeling this may have changed recently. What you need to realise is that, no matter how far you run, you are in the final stages of middle-age and will soon be an old lady, if they don't already, you will be referred to by the neighbours as "you know, that old spinster down the road", "that old biddy at No.39" etc. You are/were depressed, because the best you could get was an old defective cripple, like me who's love you didn't want, or need.
The way you treated me at the end was despicable, but entirely predictable, I will write this in my article, as a warning to others, also, that they don't blame themselves for being inadequate.
Dear
As I said, very neat of you to use me as much as possible, then get your keys back and tell me that you didn't want to see me again, as soon as you could not see anything you needed from me in the future. I will be writing on the Parkinson's forums about the dangers of meeting people with your type of personality disorder.
Also. the way you blamed me for your "depression", "I am depressed, because YOU have Parkinson's disease", was classic. This is typical behaviour, luckily I recognise it. I suspect that you are "depressed" because your re-invention e.g. running, no alcohol, detox diet etc.,hasn't reaped the rewards you expected, although I get the feeling this may have changed recently. What you need to realise is that, no matter how far you run, you are in the final stages of middle-age and will soon be an old lady, if they don't already, you will be referred to by the neighbours as "you know, that old spinster down the road", "that old biddy at No.39" etc. You are/were depressed, because the best you could get was an old defective cripple, like me who's love you didn't want, or need.
The way you treated me at the end was despicable, but entirely predictable, I will write this in my article, as a warning to others, also, that they don't blame themselves for being inadequate.
Have you had any professional help with depression and/or relationship counselling?
Hi Eck, I have been treated for depression over the years but this is not the root of the problem. I never suggested his PD was making me depressed just that I was finding it increasingly more difficult to cope and the situation was making me depressed. If you go back to how this thread started you will learn more of what has been happening and the true nature of the situation. PD wasn't the only issue.
Maddieraz
Don't let people try to tell you there is something wrong with YOU just because you find this illness so difficult to understand. So many people go through psychological hell with this, either because of the PD or the drugs. My marriage, which I was sure was one of the strongest on the planet, has ended. My husband felt I wasn't caring for him enough and after accusing me of infidelities (wrong wrong wrong) managed to re-ignite a relationship with an old girlfriend in New York with phone calls and emails. She has fallen for him all over again (she doesn't see the reality, and his voice can still be good when he tries hard) and because I am obviously a cruel and heartless wife, she has secretly booked flights for him to fly to NY and see a consultant there. Of course they both like to tell me I deserve this. You quoted an email, so I'll quote what this woman has said in an email to me:
"My personal feeling, for what it is worth, is that you’ve blown our talking to each other way out of proportion, and that it is an excuse for your own desire to get rid of an ill husband, to speak bluntly..As for booking a trip in July, it does sound to me like he is over-medicated, and as long as there are experts here he can consult with, I thought it a good idea, and, oddly to you I’m sure, solely for XX’s benefit and health. Surely you were already through with him by the time I started researching this..Finally, I have no fear of XXX’s circumstances or his possible future. It’s just the hand he was dealt, and it’s a pity he can’t rely on his supposedly loving family to see him through this."
So you see, Maddie, that people will twist and turn things around until you think you will go mad with it. The more intelligent the patient with PD, the more difficult the mental and emotional implications. I wonder if anyone can tell from this posting how devastating it is to lose your marriage and be told it's your own fault for not caring enough, when all I have done is think and worry about my husband constantly since his diagnosis. Perhaps I actually cared too much! but it is an illness that seems to affect every facet of our lives, somehow, which is hard to explain to anyone on the outside. It's hard to keep the chin up sometimes! I probably won't post again - I don't fit here now - and I just have to make a life on my own. Good luck to you MaddieRaz, you'll recover from this, and don't blame yourself for anything.
Don't let people try to tell you there is something wrong with YOU just because you find this illness so difficult to understand. So many people go through psychological hell with this, either because of the PD or the drugs. My marriage, which I was sure was one of the strongest on the planet, has ended. My husband felt I wasn't caring for him enough and after accusing me of infidelities (wrong wrong wrong) managed to re-ignite a relationship with an old girlfriend in New York with phone calls and emails. She has fallen for him all over again (she doesn't see the reality, and his voice can still be good when he tries hard) and because I am obviously a cruel and heartless wife, she has secretly booked flights for him to fly to NY and see a consultant there. Of course they both like to tell me I deserve this. You quoted an email, so I'll quote what this woman has said in an email to me:
"My personal feeling, for what it is worth, is that you’ve blown our talking to each other way out of proportion, and that it is an excuse for your own desire to get rid of an ill husband, to speak bluntly..As for booking a trip in July, it does sound to me like he is over-medicated, and as long as there are experts here he can consult with, I thought it a good idea, and, oddly to you I’m sure, solely for XX’s benefit and health. Surely you were already through with him by the time I started researching this..Finally, I have no fear of XXX’s circumstances or his possible future. It’s just the hand he was dealt, and it’s a pity he can’t rely on his supposedly loving family to see him through this."
So you see, Maddie, that people will twist and turn things around until you think you will go mad with it. The more intelligent the patient with PD, the more difficult the mental and emotional implications. I wonder if anyone can tell from this posting how devastating it is to lose your marriage and be told it's your own fault for not caring enough, when all I have done is think and worry about my husband constantly since his diagnosis. Perhaps I actually cared too much! but it is an illness that seems to affect every facet of our lives, somehow, which is hard to explain to anyone on the outside. It's hard to keep the chin up sometimes! I probably won't post again - I don't fit here now - and I just have to make a life on my own. Good luck to you MaddieRaz, you'll recover from this, and don't blame yourself for anything.
Dear Surrey Dreamer,
I am so very sorry to hear that your relationship has ended so painfully. I know from your other posts what anguish you have been in over your husband’s accusations and infidelity, and how hard you have tried nevertheless to make the marriage work. Nobody who doesn’t know this disease from the inside can possibly understand what it is like to be on the receiving end of anger and mistrust from the very person you are trying so hard to help. The old girlfriend will find that out soon enough.
At the same time, I can’t help feeling very scared for what the future may bring for your husband. If he is burning his bridges with you, partly or entirely because of cognitive changes that are part of the disease or caused by the medication, he could end up with no support at all in handling his disease (the girlfriend is hardly likely to last). Much as he has hurt you, do you truly think you can build a new life for yourself with the knowledge that his lies in ruins? Can you find it in yourself to fit him into your life as someone who deserves your help and compassion for “historical” reasons, but not your love and trust unless he specifically earns those again?
Don’t leave the forum too soon, your perspective and experiences are valued here, and I hope there is also a little comfort to be found.
All the best,
Marie
I am so very sorry to hear that your relationship has ended so painfully. I know from your other posts what anguish you have been in over your husband’s accusations and infidelity, and how hard you have tried nevertheless to make the marriage work. Nobody who doesn’t know this disease from the inside can possibly understand what it is like to be on the receiving end of anger and mistrust from the very person you are trying so hard to help. The old girlfriend will find that out soon enough.
At the same time, I can’t help feeling very scared for what the future may bring for your husband. If he is burning his bridges with you, partly or entirely because of cognitive changes that are part of the disease or caused by the medication, he could end up with no support at all in handling his disease (the girlfriend is hardly likely to last). Much as he has hurt you, do you truly think you can build a new life for yourself with the knowledge that his lies in ruins? Can you find it in yourself to fit him into your life as someone who deserves your help and compassion for “historical” reasons, but not your love and trust unless he specifically earns those again?
Don’t leave the forum too soon, your perspective and experiences are valued here, and I hope there is also a little comfort to be found.
All the best,
Marie
Hi Surrey dreamer, how are you? Thank you so much for your words. The worst thing of this condition is how the personality changes affecting so many aspects of life. I could cope with the physical deterioration but the emotional and behavioral swings are impossible. Each time the rational, charming and loving person is talking I am convinced that everything he says is to be believed. Only for some event or other to trigger a negative response and the unleashing of a tirade of accusations. At the moment there is calm but I am on the edge knowing that it cannot last long.
Your husband's lady friend will find this out soon enough that is if she hasn't already. It is interesting that she thinks she has the answer, perhaps there is some cure in the US they are not sharing with us. Maybe she could impart this knowledge to all those suffering over here.
Your husband's lady friend will find this out soon enough that is if she hasn't already. It is interesting that she thinks she has the answer, perhaps there is some cure in the US they are not sharing with us. Maybe she could impart this knowledge to all those suffering over here.
Why do I have so many doubts? He says he would like us to move forwards together as partners and make plans just like everyone else. But we are not like everyone else, so where are we at and how can we make plans? Am I so wrong to have doubts and fear for the lack of a future 'normal' or otherwise.
Just a quick line to say hello and thanks to everyone who has been so supportive. I am getting a bit stronger and getting on with my life - I have had to find work to support myself and my kids, and really try hard not to get depressed about the way things have turned out. I am still very mindful of everyone dealing with this difficult and destructive illness on a day-to-day basis, whereas I am just picking up the pieces. I lost my husband to PD and it was a very happy marriage - we travelled the world, had lots of fun, danced, sang, ate at wonderful restaurants, drank lots of lovely wine, did lots of things, and I am grateful for that. Who know what the future holds for him and for me, gone our separate ways, but after the turmoil of the last few months I am trying to look on the positive side - je ne regrette rien.