I have been diagnosed for 3years and remain positive.There are some things if am unable to do and my husband is very good but in truth he probably does no more than he would do anyway as we are both retired.i have put him in touch with Social services and encouraged. him to go to a carers support group. I feel very disloyal saying this but he seems to have taken on a martyrs role and tells everyone that he can't do things because of me ,how he is always on call etc etc .i find this very unkind and disloyal as a lot of people he says this to are joint friends and on the whole is totally untrue ....I have even persuaded him to have a weeks holiday on his own and he does at least one thing daily for himself.he doesn't cuddle me anymore unless I ask him to and he actually says he doesn't want to....I feel he will just never last the distance as I get worse .....should I just release him
I understand fully the point you are trying to put across, as I am in a very similar situation.
I have always been the force and the mind driving my family and my husband has been happy to go along with all my decisions.
Now, though, I fear for the future, as my husband does not really understand what lies ahead for me and the fact that he might have to become my carer.
He is showing hardly any empathy for my predicament and thinks I'll be able to carry on in this way for the foreseeable future. I am thankfully still able to shop, cook, wash etc, but how much longer can I continue to do these things?
I think that wives ( I am not trying to be sexist, here, but I am just reflecting on facts) make better carers and have a better understanding of the difficulties facing Parkinson's patients. Look at how wonderful Goldengirl is, for example. She comes on this Forum and keeps herself well informed on the subject. Her husband is so lucky to have her as his carer!
However, Maya, I don't know for how long you have been married, but it is surely your right to expect your husband to support you in your hour of need simply because of what you have done for him until now.It is surely his duty to take care of you.
Keep smiling, as that is all we can do in the face of this horrible disease ! I wish it would go away!
we have been married 19 years today ...it is my second marriage.we have been very happy but I think he is too selfish to be a carer and also he has a job to show his feelings which doesn't help.He told a complete load of lies to a friend about what he does for me and why he couldn't do something.......funny thing is is that I think he really thinks he is doing no end....
At the moment we couldn't afford two properties so I have told him we will live separate lives for the time being and I don't want him doing anything for me and equally he can do everything for himself ...I have very good friends who will help me and I will just accept that he is a weak person and is not capable of loving me enough to try .i don't need negativity in my life so I a,
What a strong person you must be, to have come to that decision. You are right, of course, when you say you don't need any negativity in your life, as we need as much humour as possible in order to be able to live with this disease.
Has your husband agreed to the arrangement you have suggested? If yes, I suppose that is the proof that perhaps he doesn't care enough to sacrifice himself for you.
Well, do take care and keep in touch to let us know how you are getting on.
Have just been reading your posts. I dont think that this sort of response to having a wife or husband with Parkinsons is that uncommon. I think that for some people it is very difficult for them to comprehend or understand what it is like to be in our shoes. And it also an easy or option to take the easy way out and pretend it isnt happening or if they are like my husband he buries his head in the sand and that is his coping mechanism and it isnt that he doesnt care because he does. Perhaps they are scared of the future and losing the person they once had. He just cant cope with it. In the past when things go wrong ie the kids it was always left to me to sort out. But I do think that within time we may get there. And in my experience as a woman I think that on the whole men are more selfish than women.
And I am sorry to hear about your situation and in no way wish to sound blasse or unfeeling. It is very difficult and I am sure there are women out there who do not make good carers.
Good luck with your decision. It must be hard for you to start again.
Well life has a funny way with things.....my husband went on a organised walk where he injured his leg .,was deeply embarrassed,dependant on people,bad tempered and couldn't walk.when he eventually got home he jokingly said I had put a spell on him BUT he said in that short time he said he got a glimpse of what it was like to be me!
he seems to be really trying and reading up more about PD.
still a long way to go but hopefully we may have turned the corner!,,
Having read all your comments, I feel sort for each of you. My husband has parkinsons and I care for him. He is very demanding without realising it. He does little to help himself, I try so many things to help him. He is very depressed, his personality is soft and gentle one minuet he can then go to being nasty and cruel. Everything about him has changed. I find it difficult to be loving towards him. He has done some hurtful things. As a consequence of taking too much levodopa. As a result he was sectioned under the mental health act. I have stood by him through all this. He would never cope on his own, our children are very understanding of him. But he tries their patience at times. If I go out with one of our daughters or a friend he bombards me with phone calls. He looses things constantly. Having to think for him is exhausting. I do find myself turning down invitations as I know he doesn't want to go. If we do he will want to go home by 9/20pm. He now wants to go on holiday but I don't want to go as it will not be a holiday for me. He wakes me up every time he needs to go to the bathroom at night. He can't get out of bed or back in without help. Sometimes I am so angry with him I want to hurt him physically. I never would, but I am not an aggressive person, it's just that his constant moaning and talking about his medication or his 'off' times gets to me. It's difficult for him to live with but also becoming impossible for me. I am 59 my husband is 66. I also feel incredibly guilty for feeling the way I do.
Having read all your comments, I feel sort for each of you. My husband has parkinsons and I care for him. He is very demanding without realising it. He does little to help himself, I try so many things to help him. He is very depressed, his personality is soft and gentle one minuet he can then go to being nasty and cruel. Everything about him has changed. I find it difficult to be loving towards him. He has done some hurtful things. As a consequence of taking too much levodopa. As a result he was sectioned under the mental health act. I have stood by him through all this. He would never cope on his own, our children are very understanding of him. But he tries their patience at times. If I go out with one of our daughters or a friend he bombards me with phone calls. He looses things constantly. Having to think for him is exhausting. I do find myself turning down invitations as I know he doesn't want to go. If we do he will want to go home by 9/20pm. He now wants to go on holiday but I don't want to go as it will not be a holiday for me. He wakes me up every time he needs to go to the bathroom at night. He can't get out of bed or back in without help. Sometimes I am so angry with him I want to hurt him physically. I never would, but I am not an aggressive person, it's just that his constant moaning and talking about his medication or his 'off' times gets to me. It's difficult for him to live with but also becoming impossible for me. I am 59 my husband is 66. I also feel incredibly guilty for feeling the way I do.
Little02199, it sounds like you are having a terrible time as your husband's carer, but at least you are sticking by him. How many men would have the resilience you are showing when dealing with your husband's demands? It is perfectly natural for you to get fed up at times and have a moan about it all, but you are still doing your best for him.
I still believe that women with Parkinson's have drawn the short straw when it comes to getting the necessary care from their other halves. God help us !!!
Maya, how are things now? I do hope they keep improving.
i have a similar problem. My other half seems to like other people to think that i cant manage without him, well you know what, we can do. It is true that some things are hard, but why should we have to put up with their bad attitudes?
My father who is in his 80's cares for my mother who also has PD and although he gets depressed i know my mother has excellent care. he would never shout at her, threaten her, cheat on her.
my man is in his mid 50s t- old enough to know better
I do feel sorry for you. I have PD. please remember that his moods are not his fault, A lack of chemicals in the brain, medication, all make us do odd things at times, and that includes telephoning a lot.
I do understand though, believe me, it must be impossibly hard for you.I understand that you feel like hurting him,I feel the same with mine and it is me with the PD he is supposedly "normal"
