Hi there, so my husband was diagnosed 10yrs ago at the age of 45. His symptoms are now progressing and I support discretely as he still hasn’t really come to terms with his diagnosis and neither have his family, they never ask how he’s doing (or how I’m doing). The last few months he’s gone really quiet, it’s like I don’t exist. When he does speak it’s always unpleasant, everyone is an idiot, or stupid. It’s like living in solitary confinement, thank goodness for our kids and work! Is this part of Parkinson’s? He does work, but not much, he just watches TV all day and leaves everything to me - housework, decorating, gardening, cooking and so on and I do have a full time job. The only time he speaks its to moan. I was prepared for the physical issues that come with Parkinson’s, much less prepared for this though and finding it really hard
Hello LT23 and welcome to the forum although I am sorry that you are having such a difficult time of it at the moment and not helped I have to say if neither your husband or his family have accepted his diagnosis.
You say you were prepared for the physical changes but not that which you are experiencing now. I think that it true for a good many people but unfortunately cognitive and behavioural changes are common in Parkinson’s although the severity and impact is hugely variable. Sometimes at least some symptoms can be caused or exacerbated by the medication and this is always the first thing that should be checked. In your shoes I would get in touch with his medical team, consultant or specialist nurse, explain what is happening and get their advice. I would do it this way only because I suspect your husband wouldn’t even consider this and he would probably only give you a difficult time anyway - with apologies if this is not the case. May I also suggest that you ring the helpline 0808 800 0303 as they may be able to advise you further.
I myself have Parkinson’s and have to say that I hate the thought of these sorts of changes happening to me but equally know I may not be in a position to address, understand or change them. In effect I probably won’t be aware of my challenging behaviour or whatever but it is incredibly hard on those like yourself, a partner, friend or whatever to someone with Parkinson’s - and that is for someone like me who is fortunate to have a supportive family and friends who do accept my diagnosis and have at least some understanding of what may be the future for me. I do sometimes say to them if I develop dementia or undergo a personality change and turn mean and moody, would they please try to remember I wasn’t always like that but that is asking a lot. It’s difficult to be around someone who just isn’t nice to be around. I often think that the physical problems of Parkinson’s are not the hardest bit of having this condition it is all the non motor stufff that goes with it, much of it not obvious to anyone looking at someone with Parkinson’s but which can cause so much pain and distress to everyone involved.
I would like to change tack here if I may and say directly to you, that you must think of yourself too, Your husband may or may not be aware of what he is putting you through, but you don’t have to just take it either. I can’t tell you what to do, only you can decide that, but you do have a right to be treated with respect and spoken to properly. Again how you do that you will need to decide but even if yo don’t say anything out loud, never forget you are a person of worth in your own right.
Some relationships stand the test of time with Parkinson’s playing it’s part, some do better when the decision is made to separate so Parkinson’s is not 24/7 in the way it can be when together, many relationships do not survive because it just gets too hard and they end up hurting each other. I only say this to make you aware of the reality of your situation. It seems to me that maybe not immediately but at some point you will have some tough decisions to make for yourself, your husband and family and I suspect the main driver of those decisions will need to be you. I say to you with complete honesty that whatever my Parksinson’s brings to me and my family and friends, they all have their own lives and it is important that they live their lives as I try to mine, the best I can. I may not be in a position to rmember that later but I hope they will remember that and not feel too guilty if sometimes they walk away because I am being totally unreasonable – I probably wouldn’t care by that stage anyway.
I am sorry if this is a diffiult read for you but I have always tried to be honest in my replies here on the forum and my gut feeling, given how you have written, is that you needed to know something of the fuller picture. The hardest thing is I can’t tell you how your future will be anymore than I know what my own future will be. Maybe a change of medication will change your husband’s situation for you both, maybe he and his familty will begin to accept his diagnosis and that will change things for you all but equally it may not; I think you need to have some ideas as to what you see as your future whwrever and whatever that may be because you have a life and future that is as valid as anyone’d snd it is up to you to decide how to play it.
I have given some links to some easy read stuff which may help.
I do hope this has helped and not made you feel totally lost, that was not my intention and what I have written is only my view basec on what you have written and a bit of reading between the lines. You can of course disagee with my view if you wish, I have no problem with that at all.
I wish you luck and send my very best wishes. I gope somehow you reach calmer waters soon,
PS Excuse the typos my typing was going a bit wild at the time and I read it through as it should be written not what I actually typed lol
Hi Tot, thank you so much for your reply, I really appreciate it. My husband is due his annual checkup in November and I am sure his meds need tweaking, I might contact our Parkinson’s nurse and see if he can be seen sooner. It’s such a complex disease isn’t it. I want to be his support - I don’t know if he realises how he is behaving, I don’t say anything anymore as he just says ‘stop nagging’ so I keep myself busy with our children who are basically grown up, youngest is 17 and my job which I love. Parkinson’s has been like a dirty secret since he was diagnosed- I’ve told friends but he never mentions it. Let’s hope a med tweak will help! Thanks again, I hope you are doing ok.
I can commiserate with you. My husband was diagnosed in 2012 and I sometimes feel I am living with a different person. He doesn’t tune into the first part of a conversation so either misunderstands what it being said, makes it up or asks you to repeat. I’m guilty of getting exasperated and try not to repeat in a louder voice (don’t always achieve it). We do that forever thing of him swearing he has told me/discussed with me on things and he hasn’t atall. He does talk to his hallucinations so I guess he truly believes he had told me .
On a practical note definitely recommend Parkinson’s UK helpline it is for carers as well as sufferers. I’d also recommend you join your local caters support network such West Sussex Carers Forum etc. They are the font of knowledge for all things caring.
I know you haven’t mentioned money in any form but you ought to apply for carers allowance (yes I know hard to think of yourself as a carer to your husband, but you are and it sadly isn’t going to get easier). The carers allowance is rightly yours do claim it. It will be taken away when you reach state pension age.
Forgive me if I go off script for a moment ! Similarly I would emphasis that your husband gets a blue badge(if not already done so) snd claim benefits (believe called PIP now, was disability living allowance). I make reference to this because having been accepted on that benefit (regardless of still working) it gives you access to the mobility scheme to lease a mobility vehicle. Do not leave this too late as no-one is eligible post 65 years of age. Post 65 years of age there is no access to the mobility lease scheme.
Back to now hopefully when your husband has his annual review you or he can talk about his apathy to his medical team or seek help from his GP. Anxiety and Depression are very much part of Parkinson’s.
All the very best and good luck
All useful and valid points Plus1. I do completely understand how difficult it can be to support
a person with Parkinson’s, particularly where there are
personality or cognitive changes. As I said to LT23, that scenario could easily be my future too and it’s not easy to live with the knowledge that I might be the cause of such distress. It is a totally unforgiving condition and as I have said many times on the forum, there are no winners. I agree with what you say ie it can be like living with a different person and actually in many cases that’s effectively what you are doing. Sadly there is no magic formula to make everything OK., I only wish there was.
I am holding up quite well all in all, thank you.
This year is going by incredibly fast and November will no doubt be upon us in the blink of an eye but on the other hand it is still several weeks away. Given your situation I think it is a very good idea of yours to see if you can get an earlier appointment. Good luck with that.
I hope your posting to the forum has helped a little.
I am sorry things are difficult for you at the moment. My husband is at late end stage Parkinson’s so I do have first hand experience of the difficulties of living with nearly all the non motor symptoms.
As a priority I would ask GP/Neuro consultant via his secretary or Parkinson’s nurse for an urgent review given his poor mood which is causing such difficulty and impacting your mental health. It is necessary to address clinical depression as the most obvious cause of the changes you are both experiencing.
Additionally you could ask about counselling to help with acceptance of the diagnosis and depression or alternatively use a clinical psychologist
We have used all these various agencies, (the psychologist was private), with good meaningful outcomes.
Yes your relationship will change as will your husband, however the essence of who he is will always be there. It does not necessarily follow that you will not be able to adapt to these changes with good support. A good life well lived is always subject to change. It is our ability to adapt to change that is so important.
As carers we need to take on board the huge importance of self care and to feel valued and respected by those we care for. Carers Uk could be a valuable resource for you to use.
I wish you well and hope you will be able to navigate this particular phase.
Much love to you
Yes indeed don’t we all very much wish there was a magic potion.
This ‘thing’ they still call Parkinson’s that is so very different in each and everyone has an awful lot to answer for ! We were told some 10 years back at a Parkinson’s event that within 20 years Parkinson’s would become the umbrella term for a number of more specifically named disorders that would subsequently allow for better specific treatments.
In the meantime here’s to continuing to all do the best we can, Take Care Jane
Perhaps he needs an anti-depressant. It sounds like he’s depressed which is common in PD patients.