Hi, my partner was diagnosed in 2021, he is 58
He has been in denial for a long time
He has suffered with a bad hernia, to the point he is losing his medication
He is currently waiting for the operation
The last year he has really struggled with his health and a previous hernia operation also
We have been together for 7 years & happily but the last year has been a struggle!!
He just takes the medication for
His Parkinson’s & that’s it, he used to be fit & active, not anymore
I ha e tried to encourage him back to the gym for his health generally & to manage his Parkinson’s
He was diagnosed privately & was 4 months before the nhs contacted him & then he got a Parkinson’s nurse (who unfortunately he cannot relate to, we don’t condone much use)
It is like he has been in a total fog this last year, I have expressed my concerns for him but has been ignored
My mental health has struggled because of this, to the point that I have left our home as mentally drained by it all
I have been out for a few weeks & only now is he actually showing me he is devastated
I’ll be honest still love him & it was a very hard decision to leave but I kept saying to him things need to change, take care of yourself
I know he has had a lot to deal with, he tells me he just cannot take anything in & it all feels like a blur
I don’t know if this is because he is losing medication but he is saying this is why the last 12 months have been so bad & this is not him or how he is
Obviously with him being as sick as he is he is not getting his full medication, they have apparently rushed him through to get this hernia op done
I just feel at a total loss what to do? I left my home & he hardly showed any emotion or did anything to get me back, but it’s like he has woken up
But he is blaming it all on Parkinson’s/hernia
He turned up yesterday, morning a good way, I think the realisation had hit him - as I had cleared my stuff & put the key through the door.
He tells me he cannot retain anything - like a cup with no bottom Told him that this who he is
But I’ll be honest I need to think about my mental state m, this last year has really affected me
Hello Jessd
My heart sank a little for you both as I read your post. Parkinson’s is a very cruel condition. Not content with taking away one’s ability to be physically active a whole host of non motor symptoms can be implicated including apathy, depression, cognitive impairment and a whole lot more. For people like yourself trying to support a person that in many ways you no longer recognise as the person you love and who finds it hard to understand why he can’t see his attitude and behaviour is seriously damaging your relationship, it is truly heartbreaking. I too have Parkinson’s and have lived with it for a number of years. I am very aware that although I do what I can to try and stay as well as I can for as long as I can, I ultimately will have no say in how my condition will progress and I am acutely aware that may include severe physical, cognitive and emotional impairment that could turn me into a person family and friends no longer recognise, a person considered to have ‘challenging behaviours’ and knowing there is nothing I can do about it. That is not an easy thing to live with.
Your husband doesn’t sound like he is at or even near that stage at the moment and maybe neither he nor I will have our Parkinson’s develop in that way, but from reading your post it suggests to me that he does hear what you say and probably would like to do something about it but that at the moment, whether it be because of apathy, depression or something else, he simply can’t. Towards the end of your post you seem to be writing as if he is starting to be aware of what his behaviour is doing to your relationship, but make no mistake your description of him being in a ‘fog’ is very apt and more accurate than you probably know.
You are right too, when you point out the damage to your own mental health as a result of your husband’s behaviour, that you have a right to your own life and that it is every bit as important as his. It would not be hard to understand why you felt your only course of action was to leave, whatever your reasoning may have been at the time. I have no easy answers for you because there are none. Only you can decide if you want to continue to be your husband’s main carer and support, or indeed if you are the type of person who can do this - not everyone can nor do they have to as I have said many times elsewhere on the forum. Maybe this time your husband is able to understand up to a point and you and he are able to weather the current storm. I simply don’t know. What I can tell you is that I decided a long time ago I didn’t want my family to be the carers I am inevitably going to need at some point and have taken what steps I can to try and make sure this is what happens. That is all I can do to not become a burden to them
I am fully aware that what I have written will bring you little comfort and no real answers, but perhaps it has given you a little more understanding of what living with Parkinson’s means. I sincerely hope you and your husband can find a way through this current very difficult time and stand together at least for a time. Only you and he can make that decision and I believe you will only be able to do that if and when you are able to be honest with yourself and each other
Thank you Tot
I unfortunately feel that he just does not care enough
We have someone call us from Parkinson’s UK, she has been a great help (for me anyway to have support) I spoke with her 2 days ago, she had spoken to him last week, she mentioned Relate & apparently did not get much from him on that!
She knows what we have been through this year & admitted to me she feels he has been very selfish & cannot understand why I am still out (not back in my home)
He is very good with his words but his actions don’t meet
I’ll be quite honest - I have been out over a month & he has made no real effort
I want to see so e action from him, words are cheap
He keeps telling me he needs to get this operation done so he can start to feel better/more like himself
I just feel if he really cared for me he would have done something/anything
Maybe the fact he hasn’t tells me all I need to know
Is this the closure??
Hello Jessd
It was good to read a staff member from Parkinsons UK called and you took some comfort from that.
Parkinsons UK were my main source of information when my husband was diagnosed 13 years ago now. My husband also has other health issues.
The thing I did was to find out as much as I possibly could about Parkinson’s, plus some. However if you take the time to do this you quickly discover that Parkinson’s is not the same, the symptoms, the rate of progression etc etc in any 2 people, whether the sufferer has Lewy Bodies dementia too. Little is generally spoken of generalised cognitive impairment and depression/anxiety also experienced by many, nor digestive problems.
From what you are saying it appears your husband may have some significant depression and head in the sand coping techniques happening, whilst you seem to need action over procrastination ?
I’d suggest once his hernia operation is successfully completed seeing a neurologist as opposed a Parkinson’s Nurse as you say there is no connection there.
Maybe the diagnosis has made him think he no longer wants your relationship, thinking perhaps he’d rather not be a burden and his lack of declaring his undying love for you is his way of doing this.
Maybe he has just been blown sideways by the diagnosis along with dealing with what must be a painful hernia and can’t bring his thoughts together on anything.
Only you can decide if you want to tread this path with him. I’d be lying if I said it was an easy one. Probably easier on both of you to end your relationship sooner rather than later for both of your sakes if neither of you want to commit.
I often think How would my relationship have held up if it were me who’d received the diagnosis, not my husband. He’d have made a far better nurse than I’ll ever be. Do I wish for the man I married (38 years ago) Yes without a doubt, I mourn the loss of him and the relationship we had. That said my husband hasn’t totally disappeared and we’ve had to adapt because we wanted to.
As Tot said it’s not for everyone, the decision is yours.
Good luck to both of you. Jane
Hello JessD
Plus1 has written an excellent response and makes some very valid points. It may not change anything for you and that’s fine but maybe it has given you some food for thought. Plus1’s way may not be your way but getting another perspective can be no bad thing. You have obviously given your relationship with your husband much thought and as far as I am concerned it is far better to make an active decision about something, than just let it drift when you may end up with resentment or worse on either or both sides. My own ‘rule of thumb’ is if I have made the best decision I can with the information available to me at that time, then that can’t be considered a bad decision. The future and hindsight are both wonderful teachers but not available to me when decisions had to be made and that means I have no regrets about whatever decisions I did make.
I wish you well and sray true to yourself.
Tor
Hi Jess… my husband has had PD for over 10 years… for the last 8 years, he has declined both in terms of motor symptoms and non-motor symptoms. The sad thing is that a decrease in empathy is one of the results of the cognitive decline in Parkinson’s which means partners at the Advanced stages often just can’t show us the same empathy or understanding they might have done previously. (see this research study - Reduced Empathy Scores in Patients with Parkinson's Disease: A Non-Motor Symptom Associated with Advanced Disease Stages - PubMed )
Combined with this is an increase in apathy in the Advanced stages - so there seems to be a lack of motivation to do anything new or different.
Sadly, he probably is not able to do anything like he might have done in the past to show you that he cares and wants you to stay although it sounds like he does now.
So it’s not a personal thing - his brain is changing and he is probably confused by the whole thing but that doesn’t mean it’s not hard to deal with! Personally, I’ve been with my husband 26 years now and he did make some sacrifices for me when he was younger so I feel like it’s my turn now. BUT, I think if we had been together a shorter time AND if he had been at an earlier stage of the disease where he wasn’t so dependent on me as he is now, I would seriously have considered leaving as it’s really hard. You have a chance now before he is very dependent on you to be independent. Just alert anyone you need to like his GP and social services that he is now living on his own and therefore will probably need more support as the disease progresses.
So I went back, honestly felt such anxiety within an hour of being there, got upset over all that had happened & the fact my life was in my van & he hadn’t even offered to help, he could t understand why I wasn’t settled
Feel I’ve made a mistake but so sad, when it’s right between us it is but my gosh when it isn’t- the feeling is gut wrenching
Been back 2 nights & my sleep is awful, the first morning I woke up it just felt wrong being there
It was very sad to hear what you are going through jessd. We can all send words of empathy whether a person with Parkinson’s like myself or a husband or wife like you or indeed anyone else who has taken on the caring role. The bottom line as far as I am concerned, is that you have to be honest and true to yourself. If you are not, this whirlpool will keep sucking you in. You are both entitled to a life that has quality and meaning of some description (and that will mean different things to different people) but you are the only ones who can decide whether that life is together, apart and you go your separate ways or you live apart but find the caring role more sustainable by not being together all the time or perhaps some other arrangement that may suit youi that hasn’t occurred to me. I know none of these decisions will be easy, but to be blunt (which I rarely am because it quite often means saying something the person is not ready to hear) in my opinion and it is only my opinion, you can’t go on as you are or you run the risk of becoming ill. You have to protect your own health because if you don’t you won’t be able to support your husband even if you wanted too.
Instinct tells me that in your heart of hearts your decision has been made. If that is so, and you may not be admitting that to yourself at the moment but when you do, you can start to look ahead and plan to make that decision happen.
Be brave, be honest, be proactive - and find some peace for yoursel wherever that may be and whoever it is with - if anyone.
Tot