Really struggling

Hi all, I'm a carer for my 56 year old husband who has PD (5 years) who I don't really know anymore. Although I really feel for him I am struggling with the changes in his personality. He is totally obsessed with working in the garden, he can't see anybodys needs but his own. He will laugh with others one minute then be offended the next and he constantly talks ( never shuts up). I'm forever being a buffer between him and my grown up children. I am tired and don't feel I can do this forever. All other people see is a pleasant man but they don't live with him.we now have separate rooms because I couldn't sleep as he was constantly getting up and being noisy in the room cos of course it's normal to sort drawers out at 4am and I was the one being unreasonable! I know I'm rambling but this is now affecting my mental health big style. Has anyone any ideas to make my life more tolerable

thanks Mags23

Hello Mags23

I am sorry that you are in such a difficult position and reading your post I am not surprised that you are tired and don`t feel you can carry on like this forever.  The answer is you can`t and nor could anyone else.  But there will be changes that could be made so that you can carry on.

I expect that there will be other forum members with ideas to make your life easier but the first suggestion I would make is that you stop being a buffer between your OH and your grown up  children.  I would take or make an opportunity to speak to them away from OH and explain about PD, that it is changing OH`s personality against his wishes and, like you, they will have to be tolerant of his talking and obsessions.  If you can do this it will be one less stressful situation to manage.

Next is to talk to your GP about how your health is being affected and get his/her help and ideas on getting some time to yourself.  Since OH is only 56 I guess that his PD has meant retirement through ill health and that you are his carer.  You are entitled to a carer assessment and that will open other evenues for help and support.  You can register as a carer through your GP

Best wishes



Hi Mags23

You don't say what meds your OH is taking, if he's on a DA like requip the obsessive behaviour could be due to could try talking to the PD nurse or nuro and see if a change of meds would help .

I agree with Hatknitter your grown up children need to understand how PD is affecting your OH and yourself and to learn how to deal with it themselves.

Im a PWP myself and a similar age to your OH I'm obsessed with work ,as I don't know how long I will be able to carry on doing it ,for me it's a fear response to an uncertain future, I know it worrys my OH that I'm doing to much but feel driven to continue to prove to myself that I can still do it, plus it makes me feel better in myself.

Anyway now I'm rambling so live well    Cc

I'm a pwp for 9 years now. He needs to realise your support is an essential lifeline to both your futures together. Ask for carer's help via the PD nurse and try and discuss all your concerns and needs as a family. Given his age how are you coping with your possible life changes around this time. Don't allow PD take over any help you deserve in your own right. I still need frequent reminders that golf isn't life and she's right. I would be a wreck without my wife. Maybe your OH needs to read this to realise what life is all about. I don't have much to offer now but listening to the truth is always a required reality check. From his pov he's probably struggling to retain his control of anything he can to maintain his self respect. Men are proud beasts and need to feel confident in something to show for our efforts. For me it's having my wife by my side not that I let her know this enough that is...


 Hello Mags 23, there are a number of anti pd drugs that can produce the symptoms you mention, I became a very awkward selfish person when first diagnosed, a change of  DA produced the answer,speak to your PD team, and explain your predicament,you need this sorted or you will break .  I wish you a much better new year Mags, with PD you have to trade blow for blow and its very tiring but it can be done.

                                   Best Wishes        FED