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Topic Dealing with Emotional Withdrawal of Spouse with Pd Go to previous topic Go to next topic Go to higher level

By BCS46 On 2014.01.29 17:41
I often find myself feeling lonely as my husband withdraws into himself more & more.

Would love to hear from others if they are experiencing same & how they are coping with it.

Can't help wondering if he only wants me around now for the care I can provide, and not so much because he loves me.

How much of that is Pd vs just not interested anymore on his part? Can't get much of a response from him when I try discussing it.

At the point where we are selling our house and moving into an apartment,and I have suggested that we get 2 ap'ts in same building so I don't have to live with someone who doesn't really care anymore whether I am there or not.

Humiliating.

By ResistanceFutil On 2014.01.30 12:06
My husband and I are still fairly new at this and I saw from one of your other posts that his dx was many years ago. Already my husband's face doesn't express emotion well, and prior to his dx I didn't understand feeling so shut out by his lack of response. There are other cognitive and emotional factors as well. These things are hard not to take personally, but I feel better if I attribute his seeming lack of caring to the disease rather than his response to me and our relationship.

I have no advice; I am hearing sadness and frustration which would be understandable. I hope you find the support here that you're not getting at home.

By jcoff012 On 2014.01.30 14:22
One thing I have learned from our five year journey is to rely on myself for a lot of daily satisfaction...lol...As I reread that, that sounds kind of kinky...lol...Not so...I just know that he loves me as much as I love him, but PD has robbed him of a lot of his normal empathy.

So, what I have learned to do is accept his responses *or lack of them* and move on. There are times that I will force a response, but then I realize that if I say, "WHY don't you answer me....or WHY don't you smile/laugh, etc.?" that he thinks he does, or he says he simply cannot respond at *my* pace. We sit down and talk at times like that...I tell him I need a response, but if he tells me he agrees *or disagrees*, we can move on.

Sounds kind of simple, but I find I feel better...any communication is better than none. Maybe it is because we are both retired and together 24/7 that we HAVE to communicate, so we work hard at it.

We watched as his Mom began to withdraw because she could no longer speak loud enough for most of us to hear...and we decided to not let that happen...it is frustrating...Also, after dx, we sat down and talked about his quiet voice...I told him I don't find it annoying anymore, since now I know he tries to answer, etc...so, that helps the frustration, too...

One thing my Dad told me a long time ago...Make sure you hug and kiss each other at least ten times each day...for no reason at all...even if you are mad...it is hard to continue being mad if someone sneaks up and kisses or hugs you!

While we don't do this every day, we DO make a concerted habit of it! This man I love was a buff, virile young Marine when we married. Now he is a frail, tired 66 year old, but I tell him EVERY day he is sexy and handsome and that he dresses well...and that I am proud to be with him...I see in his eyes he adores me...and I do him...that affirmation helps a lot when times of quiet envelope us...

To those of you who say that a time will come for Carl and I when the frustration and hurt feelings will creep in, please don't accept that prediction...My MIL was gentle and kind, as was my FIL, the entire 22+ years as a PWP...If you fell in love and had kindness and love before PD, the kindness and love are there...sometimes you just have to work at it, accept PD for the horrible disease it is...and learn to love yourself so you can bolster your own ego....

Come on here...we understand your loss better than anyone...No one told any of us how terrible this disease would become, how it would rob us of everything we hold dear...but, going through it, we all realize we are strong, caring people who can help each other. Know you are wonderful, loving, and beautiful...we know you are...and so are we! Hugs, Jane

Sorry for such a long post, but this is of great concern for me...I want to hug you all and tell you that our PWP deserves women, and men, who know they are loved and needed, and not just as the caregiver...as a lover, a friend, and as our soulmate we married. Inside that fog we all call PD is still the same loving person we married...we just need to work at reaching them...it is well worth it! You are NOT alone...you are wonderful for coming here to vent, to talk, to laugh, to cry...and for affirmation that you ARE doing a great job! Hugs and love to ALL.

By carman96 On 2014.01.30 21:12
My husband knows how much I love him and I know he appreciates me. He still has the apathy, lack of empathy, but I know it is the disease, not him. Sometimes he can't express himself. I could not imagine living apart from him, and he needs lots of help and cannot be left alone.
Jane, I'm glad that you and Carl can still communicate. I hope for you that his progression is slow and he does not get dementia. If I think back to 5 years after diagnosis it seems like things were still normal. Now he needs so much help and part of the time doesn't even know he is home.
It doesn't get easier, that's for sure but we just have to keep going and take it day by day.

By jcoff012 On 2014.01.31 12:39
Carman, I hope Carl is ok for a long time, too...but, as I have said, we know what is coming. Sometimes it is a "blessing" of sorts that we witnessed his Mom's journey with PD, as we know what is coming...sometimes it makes it that much harder, as we notice every little thing that happens and wonder if this is the "last time", etc. That said, I know that being tired and stressed will take its toll as we go on, but I also know that his Mom and Dad handled it with great dignity and love...we have a terrific set of role models to fall back upon.

As we enter year six next week, we know that life is changing for us...this is our final year of having our grandson with us so much. I truly believe having Nigel around kept Carl moving and engaged...am wondering if he will decline when Nigel starts kindergarten in the Fall...As always, it is wait and see.

Yes, we are lucky. As Al tells me, we are in the "honeymoon stage" where he is just starting the great decline we know is around the corner. But, I truly believe we can handle it all because we have had to face so many health issues in the last seven years...Time will tell...Until things change drastically, we chose to remain positive...we know we cannot change the outcome, but that's another story! ;)) Hugs

By carman96 On 2014.01.31 21:01
Jane, you are lucky to have spent so much time with Nigel. Grandchildren are so wonderful, aren't they?

By olpilot On 2014.01.31 21:10
I am only sticking my nose in here because of events that started over the time and somewhat before my dx.

My wife and I went through a time when she just started to think we should split because of my moods, lack of caring, being emotionally indifferent. Turns out it was thd beginning it was depression, getting worse. I was still flying and pilots at that time were immediately grounded. It got to the point I literally had to choose. I choose my wife. Took another 3 years, an operation for a severe cervical spinal stenosis before I finally was diagnosed with Parkinson's.

Over the time between ending my flying career I had to write a letter of apology for my "lack of caring, involvement with the family", basically for being me. A difficult and humbling thing to do. Then came the diagnosis of Parkinson's, now my "aloofness" became understood, by us,no one else really believed or understood.

My only reason for mentioning this is because even now for us at times it becomes a problem. As Jane says communication is a lot of very hard work. Right now ig is still working, but I know I am having more problems and it isn't until it becomes problem between us that I open up. It gets harder and harder as it continues to admit what is happening, even to myself.

I feel very much for what you are going through and I know this is no answer, but it may help someone begin to understand what is happening inside their loved one.

Just one more thing, writing here is done on my smart phone, which does the spelling and it still takes much longer and still many corrections, many are also missed. Everything takes much more effort and much more time.
Good luck and God Bless
Steve

By lilflower On 2014.01.31 21:47
Hugs and much love to all caregivers out there. Yes it is not easy but as others have said it is the disease not the person causing all the changes. Don't give up ,love more ,kiss more ,laugh more always let your pwp know your love hasn't changed. Depression hits us all but how we deal with it is what's important. I'm pretty much alone in caring for my husband (24/7) if anything I think my love for him has grown. We have become strong together.

By LOHENGR1N On 2014.01.31 23:45
I've been going to write on this thread for a bit, but as Steve so well said things now take time. I can only imagine what's going through the minds of caregivers and the loneliness has to hurt. That said, a couple years ago on Oprah, Doctor Oz was liking dopamine to the oil that keeps the machine running. In My opinion a very poor analogy. I liken dopamine to a fuse or circuit breaker in a home. If fills in between nerve endings to complete the circuit and send the impulse or message. Sometimes it isn't there and an action doesn't happen. This is true for our thinking as well as movement. At times We know what we want to say but it won't come out (think of the saying it's right on the tip of my tongue but won't come out). As our movement slows so does our thought process (not talking dementia here) but our thoughts are harder to keep together and get out. So along with misreading our faces and thinking we just don't care inside our heads we're struggling to form an answer and getting part of it out it might take a couple of moments to get the rest out. At time this can be read as we're done and the other person starts on their side it's frustrating to say the least. And please don't take offence at this because I'm not picking on anyone or referring to anyone person. Over the years I've noticed that a caregiver will post about all the difficulty a loved one is having doing things they once did with ease, only to a few days later post about how they don't care or love them and won't partake in communication about it. They might end with is it really that hard if they really love me? YES! It is that hard and if one thinks about it someone who cannot work the remote anymore of remember to flick off a light, pick up after a snack or lock the door. Someone who can't drive or mow the lawn or has trouble doing regular things. To be confronted and asked to formulate a rational, cognizant synopsis of Their feelings on love and Parkinson's Disease and how it effects both of you on the spur of the moment, yes it is hard if not damn impossible to do! Well it has taken me over 45 minutes to type this and my hands are acting up so I'm off the soapbox for now. In the end, I guess all one can do is take it on faith that the love and feelings are still there held prisoner by our disease. Keep an eye open for slight signs of the love and caring as it briefly escapes and shines in our eyes or faces from time to time and remember it is still shining brightly in our hearts. Be easy on each other. Take care, best of luck and hang in there

We're all in the same game; Just different levels.
Dealing with the same Hell; Just different devils

By Sheridan On 2014.02.01 07:45
Well Lohengrin you have certainly given me a lot to think about. You make perfect sense and I had another one of my "duh" moments. I am glad that you take the time and effort to explain these things to us. When my husbands meds are "off" he will say in a very weak voice "ask me about (insert word or name here) later when I am stronger". I will then write down same word or name and prompt him and then we can have a conversation. Why I never understood that sometimes when he would not answer my questions that he just could not. Now I will ask if we should talk later... You have once again given me insight which I plan to call upon when I need to exercise patience...

By BCS46 On 2014.02.01 11:52
Thank you Everyone for your compassionate responses.

I know it's the Pd, and the thought of me leaving him would terrify him as well as upset him. It's just not easy to lose that part of our relationship.

I work hard at keeping our communication flowing and giving him ways he can pamper me, like bringing me tea in bed, even tho it is an effort for him.

I do the touching, and the snuggling to keep us close, but there are times when I wish I didn't have to make all the effort.

I wanted to get back onto this site because I found it so helpful years ago.

Being a caregiver for PWP is very difficult and lonely at times.

By BCS46 On 2014.02.01 11:56
LOHENGRIN, you are not on soap box. Your comments are valuable and appreciated.

I recall your comments from years before when I was on site.

Thank you for your insight.

By BCS46 On 2014.02.01 11:59
Thank You Steve.

I know things on intellectual level, it is the emotional level I struggle with.....

By makrivah On 2014.02.05 16:30
Al, your input about response delay when dealing with the effects of PD were very helpful. Could you share your thoughts on the inverse of that process? I mean, how does the PD brain work when taking in information? Watching a movie, my PWP just doesn't follow the plot. Playing cards (like solitaire), he gets lost, gets frustrated, and gives up. Reading, tries a few sentences and puts the book/magazine down. What's going on? He has been diagnosed with MCI (mild cognitive impairment) but docs say it is not severe and does not explain the trouble he has processing information. I should say that this is a SIGNIFICANT departure from his old "ways." I just want to understand so I can help him.

By LOHENGR1N On 2014.02.06 00:01
makrivah, That's a hard one esp. the Doctor saying the impairment doesn't explain it. I can only give a few guesses or suggestions what to look for. Reading, playing solitaire and watching movies have a common thread. Seeing. Might he be having trouble and getting frustrated, giving up because He's having vision trouble? Again just guessing here, I ask this because He might not know what the problem is or may not want to worry you. We Parkinsonians develop eye tremor, it is quite common and as it gets worse our vision gets more of a problem as our brain doesn't compensate for the tremor as quickly or the tremor gets more pronounced and the brain can't compensate for it. Although I say it can be quite common many people don't know or realize this aspect of P.D. if I can suggest before asking him take time for a brief gaze into his eyes to be sure he has them. If he does it will be easy to spot now you know what to look for and befoe you kick yourself in the pants for not noticing it before remember you didn't know about it. If we are having vision trouble we do tend to not pay attention to movie plots and lose interest in reading because it is frustrating and many patients don't realize their eyes may also tremor. That's the first that comes to mind there are many other things that could be problems infections can cause stuff to happen we would never think to associate with them, even worry about dementia or his cognitive testing results. No one wants to hear even mild impairment mentioned out loud. You're going to have to become Sherlock Homes on this one I fear. Keep Us posted and others might have some ideas also? Take care, best of luck and hang in there

By makrivah On 2014.02.06 08:13
Al, thank you. My PWP has been tested for eye tremors. He has them for sure. I can't believe I didn't connect the problem of concentrating or following plots with tremors. I guess the C/L meds don't help here? I am stumped on how to help him on this. Reading to him doesn't work, he falls asleep. So he watches tv that is highly repetitive like car auctions for hours on end. I read the other day that PD speeds up the aging process. I must agree. He reminds me of uncles in their late 80s and 90s, and his father. My PWP is 69. Thank you again, Al. If anyone has suggestions on helping my PWP stay engaged, please share.

By LOHENGR1N On 2014.02.06 08:51
Sometimes glasses with prisms installed in them help with eye tremors

By makrivah On 2014.02.06 22:05
I will make an appointment to see about the prisms. Being disengaged from visual and written input is devastating. I see him shrinking away... Dwindling day by day. So sad.


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