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By HangingOn On 2014.07.07 13:44
I have noticed that my PWP, has little empathy. I hurt myself and he does not acknowledge and never asks if I am hurt or okay. If I am sad or down, he finds a way to blame me for feeling that way. I know his personality has almost gotten mean. Is this part of PD or meds? Has anyone else experienced this?

By LOHENGR1N On 2014.07.07 15:42
It might be the med's depending what He's on. One thing many people do it read body language and facial expressions. Over time loved ones expect to see a reaction even a slight shirting of the body or a look on the face to gauge what the other in thinking or feeling. We all do it to some degree or another but Parkinson's makes our body language lie and masks our facial expressions so others don't receive any subtle hints like we used to give off and this can add to miscommunication. A crude example could be if a subject is brought up and you're not facing each other you may have been able before to tell by the way the others shoulders moved either to keep on or to stop now this signal isn't there. Our masked faces many read as apathy or not caring when that might not be so We may care but our faces cannot portray this any more. These things are common in this journey along the path with Parkinson's however not much discussed. I hope this helps a little, take care, best of luck and hang in there

By jcoff012 On 2014.07.07 16:32
I always "call" Carl on it...if he is angry for seemingly no reason, or short tempered when he normally would not be, I TELL him so. He will usually state that that "wasn't what I meant", etc.

That said, I also try very hard to not antagonize him by expecting him to have the same reactions as pre PD...PD gives the PWP a terrible mask...expressions we loved are often just not there and we have to find other ways of coping with this loss. However, I feel extremely blessed that I still see his sparkling eyes, his laughter, his personality...always when he talks to or about our four year old grandson...I still see my love...he IS in there, but he often cannot show me. Like Al says, PD robs us all of so much...

My husband and I have always had little hand gestures and eye signals to communicate...I do miss those. But, as I said, up to now, I see it in his eyes because of our grandson...and so, I know he is still there...and so am I.

As I said in another post, I am afraid too many caregivers rely solely on their spouse for affirmation...and, therefore, are unable to cope...But, we all have to dig down and learn to grasp onto life and accept that which we cannot change, and learn to assert our independence while we are traveling down this PD journey.

Good luck to you. Learn to pick your battles, and remember you are fighting PD, not him.

By HangingOn On 2014.07.07 17:25
I totally understand the poker face, we have been dealing with this for 5+ yrs. But there have been times where I have hurt myself and he never inquires if I am okay. I just wondered if the loss of empathy is a PD related issue.

By jcoff012 On 2014.07.07 18:26
Hanging On, I would say "yes", but I am not a doctor...from what I have seen by observing first my MIL, and now my husband, I think PD and especially some of the meds mask some of the "normal" reactions we have come to expect. Again, I am sorry you have to face troubles or pain by yourself, but PD does rob both the PWP and the spouse/caregiver is so many ways...lack of emotional support appears to be one that many are forced to face. Wishing you well. Jane

By makrivah On 2014.07.07 20:02
Apathy. Lack of Empathy. Hard to adjust to, isn't it? Good news or bad news. Happiness or sadness. Celebrations or memorials. Everything is the same. I found myself talking to my dog about things because he reacts to the tone and inflection of my voice. He wags his tail, runs around in happiness, gives me a kiss, snuggles next to me. Hardly a replacement, but a comfort for sure. I know my PWP can't help it and I don't "blame" him. I just love life and wish we could share it as before. I don't think it is the meds, per se. There is no off/on cycle. The masking is pretty consistent.

By LOHENGR1N On 2014.07.07 23:32
Mak, you bring up another important aspect ...tone....we become monotone and then at times when we try to inflect tone we find ourselves over doing it so a dissatisfied tone we mean comes out as a harsh or even hateful sounding remark.

By McCall On 2014.07.08 18:34
I think it is the PD more than the meds in cases like this. PD does often make changes in personality, usually for the worse, although so far in my husbands case after a really terrible year and a half of complete negative personality change. Now it has been the other direction and he has been overall nicer than before the PD

By HangingOn On 2014.07.08 20:44
Thank you McCall, that is what I was trying to ask.

By carman96 On 2014.07.08 22:16
A friend of ours has been battling cancer for almost two years. This is the wife of his good friend and fishing buddy.
My husband just doesn't understand that his friend doesn't have time to go fishing, yet he will repeatedly call and ask him to go fishing. I keep reminding him that our friend is very ill, but he just has no emotion about it.
His empathy is gone with the wind. So sad for all of us really.

By LOHENGR1N On 2014.07.08 23:57
I think it's a matter of perspective in many cases (not speaking about dementia or delirium here). We are trying to hold it together every moment every day. Our systems are failing Us we wonder if we should try to get up because we're not sure we're steady enough to and don't want to be scolded for knowing better than to try. We don't want to be a burden we don't want to complain. At times it takes all our concentration to do a simple (in the past) task. We're not the same person anymore and We know it also as you do. We strive for independence we fight for it only to be thwarted by disease and the ole what were you thinking? Yes caregiving is one hard hellish job and you get hurt or sore from it I'm not saying you don't. We patients are in the battle of our lives for what life we have left so at times (most of the time we can't stop fighting the disease to react as a healthy version of Us used to react.)

This is a very poor example but at the moment it is all I can think of to give (lots of stuff going on here distractions and worries from major changes, but that's a story for another time and thread) ....the little Dutch boy with his finger in the dike holding back the leak (your parkie trying to hold it together) someone (you) come along striking your foot on a rock, it hurts you holler in pain but the boy doesn't run over to see if you're okay (your parkie) because if he does the dike (problems they're facing and fighting to hold together will pour forth overwhelming you both.)

My sister has a sore shoulder, she's had it for about a week, talking to her on the phone she sounded distressed I asked what's wrong to which she hollered my shoulder still hurts! I'm sorry maybe I'm apathetic too but from my perspective looking out of a twisted body ravaged by a incurable disease that will kill me, that I have been battling for almost 29years now, I saw no reason for Her to shout that Her shoulder hurt. Do I feel sympathy because She's hurting? You betcha I do I don't want anyone to be in pain. My perspective is different thanks to Parkinson's Disease and yes probably the medication too! And caregivers have to change Their expectations of Us and really realize that these changes are beyond our control most times, as We adapt to how the disease changes we focus on these and changes Take care, best of luck and hang in there

By Mary556 On 2014.07.09 08:29
Lohengr1n, thank you for all you do to help us to understand better. Your words have helped more than you can ever know. I'm so grateful to you (and olpilot and other PWP here).

By moonswife On 2014.07.10 20:42
I have an unusual contribution. PD has had the opposite effect on my husband. He has always been very stoic, as his parents were. As PD progresses he has periods of great strong feelings that he NEVER would have shown years ago. He cries when he hears someone has died, he worries about the neighbors cancer, wanting to send food, pay for a gardener, etc.
He was never demonstrative. Now he holds my hand, tells me he loves me a lot more, scolds me for not getting enough rest, etc. Who knew, was this person always inside him and Mr. Parkinson released it, or is the dopamine awack?
Who cares, as long as he keeps trying

By Gidget On 2015.01.12 23:14
Hi I'm new here. Look up "Alexithymia" in Parkinson's patients. It explains the lack of empathy in PD patients. I have been dealing with my husband's lack of empathy for years. It's easier now that I understand, but not easy to live with. How to care about and for someone without losing yourself is the challenge. The hard days are when I feel need.....and look to him to empathize. Not a good idea. The hard part is knowing it isn't going to change. Thanking God, who strenghtens me....

By Mary556 On 2015.01.14 00:34
Thank you, Gidget. That must be so difficult.
God bless you and your husband.

By Witsend On 2015.02.23 00:07
HangingOn, the lack of empathy from my formerly very caring husband was extremely difficult for me at first. In my husband's case, he was heading into dementia along with the PD. Now that he has been placed in an Alzheimer's Care center for several months, I find myself regretting the times I lost patience with him in the many years I took care of him at home. I don't know if that helps anyone, it's just what my experience has been. Strangely, as his dementia has advanced, he has become sweeter and more empathetic.

By Islandview On 2015.03.24 07:37
I am new here and have been reading all of the posts on every topic since I found you. What a blessing! Having cared for my 94 year old mother in my home these past four years I feel that I have been shooting from the hip... and getting advice from the wrong sources. It is so great to hear from people who are living on both sides of PD. I especially thank Lohengrin today for flipping the coin for me. It will give me greater motivation to practice patience as I deal with the increasing dementia my mom faces, allowing her what little independence she has left, despite the inconvenience for me.

By HangingOn On 2015.04.05 08:36
Thank you to all for taking the time to respond and share. My apologies for not responding sooner, but I had computer troubles. It is tough and I have to concentrate less on what used to be.

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