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Topic Emotional toll and fighting Parkinson's Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2012.06.05 00:17
I read your post with a heavy heart, heavy for all of us involved in this long fight. For years here on the forum People have come and gone. Wisdom and knowledge about dealing with this disease has grown, tips for dealing with the many problems involved in every day living. Helpful tips for getting around easier. For eating and cleaning. Hints for dealing with anxiety and hallucinations. Tips for scaling down expectations of functioning.

But not many tips for interpersonal relationship problems. I don't profess to know many answers to help in those. The Person with Parkinson's in many ways isn't the same person they were pre-Parkinson's.

We don't expect the same functions physically from them. As the disease runs it's way killing our brain cells and disrupting even the basic rhythms of the body, heart beat, breathing, blood pressure, eyesight, speech, facial expressions etc. We on some levels acknowledge this. But on an emotional level we seem to not make the transition to the disease. To varying degrees we expect the same or similar emotional responses to stimuli as before. As we are or were used to normal behavior a smile got a smile back.....a I love you got the same returned in kindly fashion. We are left in the lurch....a sometimes empty void of no response or a toned down response leaving Us wanting, wishing for more. Wanting the old to still be there. This disease masks our faces halting smiles. It robs our voices leaving responses suspended inside not finding a way out.

We do need to address these problems, to find ways to adapt and transcend these obstacles. We can think our way through problems with doorways and halls, stairs and freezing but come to a screaming halt at relationships needing tweaking. They say the eyes are the windows to our souls? Maybe we need to look at the eyes instead of the lips? Look for the spark or twinkle or smile inside them for the reaction we're looking for? Forget the smile if it comes fine if not look deeper. With practice we can find ways to see those reactions we so need to cling to. To find that surprise to unexpected visits or presents. In one of the relationships that blessed my life we would tell each other we loved them in a crowd, talking with the Children any time even in the dead of the night with 3 little nudges, squeezes or taps ..........tap= I ...tap=Love.....tap=You! Adaptation we do it all the time with this disease. Don't or can't tap, adapt wink instead or blink if winking is too hard. Improvise in the relationship. We fight together to improvise in the every day living and physical realm of Parkinson's. I mean if you think about it you make smoothies fix foods buy aides to help us dress and bathe or shower, even things to help us turn over in bed easier. Then We stain our pillows at night with tears of lost loving expressions between us. We must fight together for emotional health too. These are just a couple of suggestions. Please share what works for You, even what didn't work (so same mistakes can be corrected before tried) Remember it won't be easy it will take effort and work to rebuild and adapt but We can do that! We've already proved it with many physical hurdles. We Parkies are busy giving it our all fighting each day so give us the tools to help relate to You on emotional levels again even if it isn't like before it is still something and daily we take what we can get back even if for a short time from this disease. Yes we sometimes forget you're just as involved in a way as we are. And you know we'll take gladly what we can get back to show you how much you are loved and cherished by Us! Take care, best of luck and hang in there.

By jaxrock On 2012.06.05 10:50
Very well said........

Just this morning, I had to decide for my husband which pair of absorbent underwear would be best to wear for today.

This is a man - I won't say "was" - who was a police officer in a major city, then going into business in the corporate world...all the while helping me raise our 4 children....A brilliant man whose mind I always thought was like a calculator....could figure anything relating to real estate, finances of any sort, as well as being a wonderfully sociable, helpful-to-all friend, husband, father, and grandfather...

Now I chose the right type of absorbent underwear for him....

So sad.............but I'll continue doing the best I can for him........for us...

By Jane On 2012.06.05 11:33
I just experienced an insight into my reaction to my PWP. I noticed myself feeling angry with him when he was being nice to me. In fact I usually felt angry towards him. I finally got behind the anger and recognized that I was mourning the loss of the wonderful husband that I had fallen in love with. His being nice was reminding me of what I lost. When a person very close to me died I feld tremendous pain with loosing her. With my husband, because he is still in my life but has changed, the pain of loss was more difficult to recognize. After recognizing the pain of loosing parts of him and having a very long cry, I was able to see and appreciate those moments of good interactions with him.

By jaxrock On 2012.06.05 12:52
Oh my gosh, Jane

I could have written your post word for word!

Yes, this slowly losing our wonderful husbands is painful...very painful...

I can only imagine how they must feel.......to be so dependent on us for just about everything...

I'm crying, but I have to go to the bank..............so, upward and onward...

By parkinit On 2012.06.05 22:27
I found myself reflecting today on my wedding day. The joy of having my spouse by my side, enjoying the world and life, in general, together for several years before PD took it's toll.

It had been awhile since I had given my spouse a hair cut (I took him to someone else last hair cut), but I decided to do this for him a few days ago. Today, a friend stopped by and mentioned that my PWP had a fresh hair cut. My spouse looked questioningly at me and said, "Did I?"

This is the first time this has happened to this extent. Some short-term memory lapses in the past, but not something that he really should know as he sees himself in the mirror. It made me very sad as I realize the dementia is progressing (no, no med changes recently).

I do miss my sweetheart.

By dkleinert On 2012.06.06 00:20
LOHENGR1N: You so bring me to tears - you are so eloquent in how you speak of all of this. I am so thankful you are there to speak the PD side of things. You are my hero!! Love and Hugs to you for staying with us and giving so lovingly what you always do. God Bless YOU!

By RATsLinda On 2012.06.06 02:48
Written by LOHENGR1N: "We are left in the lurch....a sometimes empty void of no response or a toned down response leaving Us wanting, wishing for more. Wanting the old to still be there. This disease masks our faces halting smiles. It robs our voices leaving responses suspended inside not finding a way out."

This perfectly expresses how they've both told me they feel. She told me she knows he's still in there, but he has a hard time expressing things. He told me he gets so frustrated because his brain tells him exactly what he needs to do but then his body won't allow it.

Written by LOHENGR1N:"They say the eyes are the windows to our souls? Maybe we need to look at the eyes instead of the lips? Look for the spark or twinkle or smile inside them for the reaction we're looking for? Forget the smile if it comes fine if not look deeper. With practice we can find ways to see those reactions we so need to cling to."

Thank you for bringing some much needed clarity to my inner struggle with trying to be of help. I've always been what folks refer to as an "empath" and feel like I can sense other peoples' emotions very strongly - and sometimes I really struggle with that. Finding a healthy balance has always been difficult for me. I needed this reminder to help me remember the significance of helping them find ways to express their feelings to each other.

One of the most precious moments in my time with this beautiful couple, thus far, was one of the days she had experienced a "meltdown" in front of him over a very minor issue. She apologized to him and expressed her deep sorrow in not being more patient and kind, and she hugged him and told him she loved him. He was unable to hug her back or verbally respond at the time as he had frozen up, but a little while later, he walked by her and tugged on her shirt tail and said, "It's ok."

I do hand drumming as a hobby and took two of my drums with me one day. One is small enough to be a "lap" drum. I gave him that one and I played some beats by myself at first. His wife mentioned the dancing lessons they used to take and she asked him to play the waltz beat. He was able to tap out the beat and they both lit up. :o) On one of his better days with mobility, he tried to teach me how to do some steps and then grabbed her to dance. Those days are the best medicine for everyone.

The not-so-good days are the emotional land mine days that we need to learn how to emotionally navigate much better. Her voice raises as her patience wears thin and he naturally picks up on that and shuts down even more, and I feel the most lost in those moments. I loved your suggestion of the nudges/taps or whatever adaptation is possible to try to keep each other grounded.

This is so very powerful and so true - Written by LOHENGR1N: "Adaptation we do it all the time with this disease. Don't or can't tap, adapt wink instead or blink if winking is too hard. Improvise in the relationship. We fight together to improvise in the every day living and physical realm of Parkinson's. I mean if you think about it you make smoothies fix foods buy aides to help us dress and bathe or shower, even things to help us turn over in bed easier. Then We stain our pillows at night with tears of lost loving expressions between us. We must fight together for emotional health too."

I've been struggling with, praying over, and meditating on how I could find more ways to connect them on an emotional level and this thread has inspired me to continue seeking and doing even more to ensure that happens. I'll plan to share your post(s) with them on Thursday.

I also found a local PD support group that meets once a month for PWPs and caregivers. I've been in touch with the facilitator and plan to attend to see what I can learn and will hopefully continue to gain more insight about the emotional health.

Thank you all for being here and for so openly and sincerely sharing your successes and struggles. You are such a blessing and I'm forever grateful.

By karolinakitty On 2012.06.07 12:39
Awesome LO as always......

Even when Jim's eyes were almost closed tight because of the Requip, I could still see that twinkle in them....I could see, even through the pain that my guy is still with me......right now I truly am cherishing every moment as we sit here, having gone through so much, having him progress as he did so fast it seemed, to a re-birth as just being off of one drug.....Masked in the side effects, we lost a few good years...but through it all, we also realize how much we have gained in learning how to deal. to cope...to understand.....there are ways to look past the mask, the emotional nothingness that appears on the surface....the one word answers, perhaps the not at all answers....sometimes we are the hurried ones as caregivers, we want things to be done, we have things to do, laundry, cleaning, med times, bath times, we have so much on our plates we sometimes skip the obvious as we run through our daily lives. We are trying to stay healthy and trying to keep our sanity and forget sometimes the person behind the mask, our lover, our friend....we need to dig deeper and take the time to see our loved one the way we once did

By Elly On 2012.06.13 20:00
Beautifully said, LOHENGR1N. My eyes welled up as I read your eloquent words.

By cmonge On 2012.06.17 10:04
Thank you so much for your post. One of the hardest things for me is feeling more like a parent than a wife. Yet my husband still sees me as a wife and I find it hard to relate to him as a wife on the occasions when he is able to be emotionally there for me as a husband. Those days are becoming fewer and far between. Of course he doesn't see it. Then I get frustrated because he wants to go everywhere with me yet he slows me down or ruins it because he gets tired and grumpy. There is no easy answer. You just have to treasure the good times and find time for yourself to save your sanity.

By RATsLinda On 2012.07.02 03:11
Just wanted to drop by and say thank you, again, and give a little update. Several positive things have occurred since my last post and I wanted to share.

The PWP and his wife are in the process of receiving a second opinion regarding some neurological areas of concern she didn't feel had been thoroughly addressed after his motor vehicle accident.

They did a nerve conduction study, which the previous neurologist said he was "certain the symptoms were strictly the PD and didn't feel any testing was necessary".

Apparently, the test revealed damage that could have been successfully repaired through surgery if caught sooner, but he says there may still be a chance. She said she at least feels heard and understood with this neurologist, much unlike the other.

I told her of the local support group for PD patients and caregivers and my plans to attend later this week, in hopes of learning more, and improving the care I provide. She expressed a lot of gratitude and mentioned that it might be good for them to be around other people and share experiences, etc. Previously, she didn't even want to entertain the thought.

I see more contact and more smiles, too.

There are definitely still bad days, but not "as" bad.


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