How do partners/carers cope with the lack of empathy.
My husband shows no empathy or sympathy if I mention I’m not feeling well.
It’s totally unlike how he used to before this evil disease
ouch! my partner has a lot of empathy and sympathy, which is largely unchanged after the diagnosis. she actually secretly suspected i had parkinson’s for several years but said nothing because i reported that the neurologist was absolutely certain that i didn’t have anything major. so i guess this aspect of the disease can vary a lot.
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Hello KK1
You ask an interesting and very valid question and I can’t pretend to have any real answers for you but in my personal opinion I think quite a lot depends on the sort of person the carer is and how much they are able to not only see it is the progress of the condition but also how much they can cope with the consequences. I have Parkinson’s and I often think one of the hardest things to explain to people who don’t have it, is that even when you can recognise the impact a particular symptom is having, you are frequently not able to stop or prevent it. One of the easiest ways to explain this is to perhaps use my own difficulties managing stress and anxiety, which I am more prone to than pre-diagnosis. Even when I know I am being irrational, even when I can recognise that it is Parkinson’s turning up the heat, even when I can hear what people are telling me makes perfect sense, I simply can’t believe any of it until whatever it is reaches some kind of conclusion or until I manage to kick start a coping strategy. One of the difficulties with Parkinson’s is that symptoms can occur, like lack of empathy, that they are not aware of and can’t see the impact it is having on those around him or her, This is true I believe, of many of the challenging behaviours that can develop as a consequence of having Parkinson’s and something like lack of empathy can be as devastating as any of the arguably more obvious ones such as extreme anger,
To me one of the most devastating consequences of Parkinson’s for the carer and arguably particularly when the carer is a spouse because of the nature of the relationship, is that it can be a very lonely place if these types of symptoms develop. Often the shared understanding of which empathy is a large part diminishes and if you are used to this being a large part of a long standing relationship it can be very difficult to accept and adapt to that change.
In my working life I worked with people who had various forms of dementia, many very severe and I used to love this aspect of my work and it gave me much satisfaction. It used to shock people however when I said I couldn’t be a long term carer to someone with a severe and demanding form of dementia. Someone for example, whose only conversation is around what’s for dinner in various forms for hours at a time. Yes I was happy to work with them but at the end of the working day I could go home and get on with my life. Living with that 24/7 is a totally different kettle of fish and I know I am not the right person to be able to carry that kind of scenario. I am sure others will come along with more productive
suggestions than I but I think if you are able to work out how you view the lack of empathy your husband seems to have developed and maybe how you understand the impact it is and will have on your relationship maybe you will be able to adapt to the changes it is bringing to your relationship. It is undoubtedly a difficult challenge you are facing.
I’m sorry not to be able to give you any real strategies or useful answers to your question but maybe I have helped a little to understand that sometimes we are simply unaware of the change Parkinson’s has brought to bear. Our behaviour seems entirely normal to us. I’m sure your husband would be mortified if he realised how he had changed and how this has changed your relationship but I suspect he simply doesn’t see it.
Tot
Sorry I think my post was misunderstood
My husband has Parkinsons and he shows no empathy to me if I’m ill
He used to be so caring.
not nice
Yes I did understand that what I was trying to do, although clearly failed, was explain that it was likely he couldn’t see how he has changed so a lot falls on the carer and their view of what is happpening and if they can accept and adapt to that - some can some can’t. Unfortunately I do not have any go to answers for you because everyone is different and I speak as someone with Parkinson’s not a carer. Sorry if I confused you and feel free to ignore my post if it’s not helpful I have no problem with that at all and as I said, I hope others come forward with more productive strategies to help you cope than I am able to.
Tot
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sorry @KK1, when i read you writing “if I mention I’m not feeling well” i thought that meant that you were the one with pd.
regarding the victim of the disease not showing empathy: what i have realized has happened to me is that much of my “executive function” capacity (the ability to force things to happen in my mind) has been more or less permanently reallocated to stopping pd rigidity and tremor and to a certain extent bradykinesia (smallness of movements and slowness). i no longer have much spare “self control” left over to make sure i am nice, responsible, considerate, etc.
hope this explanation is somehow helpful.
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Hello KK1
I take myself off and cry because I know it’s not my husband that isn’t caring anymore it’s Parkinsons that’s robbed him of his ability to grasp what is happening to those around him. He used to be the most empathetic caring person and I used to say if the tables were turned he’d have made a better nurse than I.
It’s a lonely path when the one person you love and who has been your lifelong support is still there but unable to be the support they once were.
I try distraction and to occupy myself, if feeling really unwell take myself to bed and hope he doesn’t hurt himself or break something while I’m there. Then start the next day a new. Best Wishes Jane
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Hello. I have Parkinsons now for 13 years. For me which is easier to say than do , you need to still be the person you always have been rather than defining yourself almost by your PD.
Living with PD person can be hard just ask my wife. But I try as far as I am able to keep PD out of everyday life.
Best
Steve
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Hello, yes it’s horrible.
My partner tries, and makes an effort if I take to my bed. I developed appendicitis a couple of weeks ago and he did his best, although it was even easier for the staff to ignore him than ignore me.
I find it’s more general than illness though. We rarely have a conversation. He doesn’t respond to me or talks about completely unrelated things. Not helped that his speech is dreadful.
Sorry site is playing up
It is the disease. I think you have to say what you want
Thank you for your post. It was very thoughtful and helpful to hear from a pwp
Hello KK1, my husband has had Parkinson’s for approx 8 years. He too seems to lack empathy and sympathy. But the lack of any coherent conversation is what upsets me most. Most of what you’ve written totally resonates with me. I keep reminding myself it’s not him, it’s this most soul destroying of diseases that has now added early PD dementia to his ever growing list of symptoms. Sadly, life as we knew it has changed and all we can hope for is these symptoms can be kept at bay for as long as possible. I know exactly how you’re feeling, so take some comfort in that you are not the only member of the club that nobody would ever want to join. Keep positive. Best wishes, Jean.
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In answer to your question all I can give you is my point of view. I have had PD now for 13 years, and my husband is my carer but either of us are not getting any younger, my hubby also have quite a few illness and is 4 years older than me, Its hard to be a carer as the more my PD takes over the more frustration it gets, and the nearest thing to have a go at is yes!!! my hubby, and to be honest I don’t think that with having PD how it effects my hubby as well as me. I know he still cares as I also do but as a carer you have the hardest job of all, So what would I do, well I think just take your self off and have a bit of pampering eg Hair styled / nails / body massage ect, you can have a good moan by talking to your hairdresser as every thing you say is kept a secret, (i should know from 16 i was a stylist) you give your self a little time, it is not selfish you deserve it.
I have the same problem. Only his wants, needs and feelings matter. Right now! Hop to it! I even had to go to town and pay a bill the day after a hospital stay for kidney stones when I was supposed to rest in bed… I was in agony. He wasn’t able to notice or care. I just remember that the vows to love, honour and cherish are a two way street, and he’s not keeping up his end. It is hard, it is unfair, you have every right to feel aggrieved, unhappy, disappointed, unappreciated. You’re normal. My husband is going into a nursing home soon as he lacks medical capacity to keep himself alive with appropriate insulin and diet for diabetes type 1. He’s a safeguarding risk to us both and social services, not the next of kin, is responsible for him
You’re still very self aware