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Topic Frustration with comments.... Go to previous topic Go to next topic Go to higher level

By jcoff012 On 2014.06.01 16:30
I know we have talked about this before, in other posts for other reasons...but, it happened again Friday night...Each time, with each new person's comments, I get thrown for a loop! I know, I know...YOU???? lol

We went out to dinner with two other couples. Carl was nervous and his tremors kicked in several times, but these are good friends, so they acted normally and we had a very pleasant evening. At one point, he got up from the table to take his meds and allow the tremors to subside a bit. I knew what he was doing, of course...

Therein lies the problem...As we were leaving, one of the wives said to me, as I was walking out ahead of Carl, "Carl looks great, Jane. I was expecting him to be much worse. He is doing great, isn't he?" I was stunned...I just smiled and nodded...But, it kinda shook me up a bit.

Was I at the same dinner? Did they truly not see his VERY visible tremors? Did they not ask him repeatedly to repeat comments as they leaned into his speaking area?

Again, since we rarely go out in groups, or go out in large venues, WHAT should I say? What do YOU say? Does anyone REALLY want to know? And, I guess the hardest statement was "he's doing great, isn't he?"

I have to admit, it bothers me to lie to Carl, but when he asked about our brief conversation, I said it was about living in our new home...Got to thinking that if he thought they were talking about him, he would not want to go out in public much.

Am I being too sensitive a wife? I just have a really hard time with that question, as it isn't the first time I have been asked...Does anyone want to hear: "No, he never sleeps through the night, is in constant pain, excruciating back pain, he sometimes cannot eat because of his tremors, the tremors are on both sides now, etc., etc...

By Trusting On 2014.06.01 22:15
Friends and family say the same thing to my husband and me. Even after the two heart attacks in 3 weeks on top of PD they would say, "you look wonderful, we were expecting you to be a lot worse". The Dr. told me in the hospital I had "one sick man". We partners get to see them day in and day out and know how they suffer. We watch them have one good day and be down the next. I guess people are just trying to be kind but I also wonder if they have any idea of what this is like.
I hope you and your husband will continue to go out as often as possible. I think it takes their minds off being sick when they are able to be with friends. Hang in day at a time. Blessings.

By LOHENGR1N On 2014.06.02 00:11
Jane, that's a tough one! We Parkies if we're honest tend to believe that everyone is looking at Us anyway. Telling Carl might confirm those fears or it might get Him to tell them himself of the many limits and adjustments he has to make to go out to eat and what he's going through while out dining (you know best how he'd handle it.)

Maybe another way to help others understand would be as you're leaving to say hey you know I really enjoyed tonight lets have you come to the house for a coffee (decaf) or some ice cream We can visit more. Then they would see how when the "restaurant performance" is done and He's home more of the impact our disease has on him? Even hand rails or other adaptations made for easier maneuvering. I don't know just a thought or two that might help in the future?

Trusting to me with Parkinson's it does just the opposite it makes me much more self-conscious. I'm more aware of my limitations and become my worse enemy. The more I try to be "normal" the more stress I put on myself and my tremors get worse I can start to become dyskenitic making my fear of spilling, tossing and dropping everything more libel to become reality. Of course we're all different so some might have their minds off being sick but I'd say for the most part it just heightens our awareness of the effects of our disease even if on the outside we look fairly calm inside we're jiggling like jello in our outstretched hands. Take care, best of luck and hang in there

By carman96 On 2014.06.02 21:42
At my brother in laws memorial last year my brother had to help my husband into the building, practically holding him up because of one of his "dizzy" spells and the fact that he gets wobbly after walking a bit. A long time aquaintance came up to me and said "I was expecting Mike to look a lot worse" I said "did you see him come in?" and he said yes. I didn't really know what to say to that. Granted, my husband doesn't have tremors, but slow, stiff and wobbly.
I wondered after that comment what exactly he had expected to see. I guess he had heard through the grapevine that Mike was getting worse.
It is difficult to go places. Beside the fact of the restroom problem, and the wobbly legs, he sometimes forgets how to eat and will struggle with his meal. Bringing the wheelchair has it's own problems, like narrow aisles, etc.

By jsf On 2014.06.03 12:36
My PWP and I are flying for a visit with sibs on both sides. I expect to hear exactly the comments you all have mentioned - he looks great, not as bad as I expected. I've been rehearsing a response - "I'm glad you think he looks better than you expected. He tries so hard to be at his very best when he is around others like you. He'll rest up again tomorrow." I'm hoping to gently imply that they are seeing the best, not the worst, and that this "best" takes lots of effort. What else should I say?

By JulieB On 2014.06.03 15:17
Jane, I have gotten these same comments as well. "Michael sure seems good today!" someone will say, and I think to myself, "well just wait an hour," and it very probably will change.

I wonder if people are so sad seeing the changes in our PWPs, they look for the smallest little thing to be complimentary about? I have wondered what to say to these well-meaning comments, like some mentioned here. "Are you kidding me? You think this is good?" but of course I don't. I usually say, "I'm glad you were able to visit with him" or something like that. Ah yes.... xoxo

By ResistanceFutil On 2014.06.04 08:53
When anyone says "He looks great" one can always reply with (from Breaking Bad) "yeah, but handsome was never the problem!".

Also in the link given by Lohengrin on another post, the links went into what someone who is illl wants to hear, what someone who is ill doesn't want to hear. My take away comment was "yes, doing as well as possible" and leaving it at that.

By jsf On 2014.06.04 10:13
Oh! I like that one - "doing as well as possible", that does really say it all and I'm going to make that my standard. Thanks.

By Witsend On 2014.06.05 15:17
Uggghhh!! Happened to me (again) yesterday! And it IS frustrating! I love the Breaking Bad line, Resistance - "Handsome was never the problem" - Perfect!

I was so grateful one time after having breakfast with a couple we see once or twice a year - the wife requested lunch with me for some "girl time". We sat down and she said "What in the HELL is wrong with your husband???" I laughed so hard I cried. I really appreciated her candor!

By makrivah On 2014.06.05 17:20
I've found that most folks don't really want to know details or desire honesty about my PWPs condition. So any passing comment works, such as "his meds are working well, most of the time." Then move off the subject.

A few friends do care and let me know if they have seen a change. This helps me normalize my observations about changes.

Some realize that we are doing all that we can and our options for treatment are limited in the long term.

My closest friends will ask about my PWP, but then quickly ask me how I am doing and offer support. These are the GOLDEN friends I treasure.

I must confess that a few "friends" ask about my PWP with false compassion (and a desire to fuel the gossip pipeline). I save my SPECIAL reply for them. With a big smile and a lilt in my voice I say: "Today he is having a wonderful day, because there may never be another as good as this." That works every time to shut down an awkward conversation. The trick is to say it with lightness and a smile. But just between us on the forum, unfortunately it is too often true.

By LOHENGR1N On 2014.06.06 17:43
Well here's one....I just had posted on my facebook a friend in Her status was at LOWES store said She was separated from Her Husband when a Store employee asked if she was separated from Her group? She said yes and kept response to few words because She had recently had DBS The Employee turned Her and pointed to a group of mentally challenged adults. My friend said she thought ...that's how the world see me? Lady I've got 6years of college and two degrees ...and this is how you see Me? My friend was needless to say blown away by this as I think any of us would be. Geez what sensitivity is lacking in this world and Some people ask Me why don't you go out much when your meds aren't working?

By cmonge On 2014.06.08 13:21
People always tell me my husband looks good-honestly I don't think they notice a lot of what I do, the tremors, the stiffness, and of course the stuff that goes on at home. Also, he's pretty quiet so they don't notice how bad his speech is. It is frustrating because you see the progression and everyone thinks everything is fine.

By LOHENGR1N On 2014.06.08 17:00
cmonge, it's all kind of like someone opening up a book in the middle reading a paragraph and then yelling you what the whole book is about isn't it? They kind of take in what they want or are comfortable with seeing and disregarding the rest.

By olpilot On 2014.06.13 02:20
We just got back from a 27 day 3200 mile motor home trip, visiting friends we worked with for years. It was an emotional and physically draining experience. It went from a friend of mine arranging a flight in an open cockpit biplane where I got to fly the plane with the owner to another who took care of me as if I was on my death bed. It's hard for me to know how to respond when depending on the moment any of them might just be right.
The experience of flying a biplane again was fantastic it was very early on in the trip and I was feeling great. The pilot with me was very kind and said I hadn't lost a thing, his father has pd and he treated me like me. As time went on I got worse, felt worse and an old flight attendant friend really babied me a bit more than I was comfortable withn but then again it felt kind of nice. I know as the days went by I was more and more tired and I was beginning to feel sick. I hadn't seen any of these folks for about 10 years and I know they were watching me and they were sensitive to how I felt and how I was doing. Having people who haven't seen me for a long time react to me was new to me. Having them understand I had new limits and wasn't the old me was a relief. I spilled a little and I guess I was quiet at times, I would get emotional at times but they knew meand knew I had changed and for the most part I was still the person they remembered me as. We all change, we are all getting older but I still felt as loved and as liked as I ever did. Does my wife get a bit defensive and protective, you bet just as I hope I would. I think those with us and caring for us everyday have a decidedly biased point of view and thank God for that. Everyone else just tries to see us the best they can.

I'm just glad not everyone looks close enough to see all the warts.

By makrivah On 2014.06.13 08:36
Olpilot, Wonderfully said.

By carman96 On 2014.06.13 10:02
Steve, wow, that's a long trip! Sounds like you had a good time. Must have been so wonderful for you to fly again.
How nice to see old friends. I guess they must have a totally different perspective than people who see you more often. I think they are really good people to accept you as you are now and make you feel comfortable.

By jcoff012 On 2014.06.13 14:02
Outstanding, Steve!! So glad you got to fly again...

As Father's Day approaches, I found myself thinking of my Dad, after reading your beautiful post...His one regret in life was that WWII helped ruin his eyesight so that he could not pass the pilot's test back home...he always wanted to fly...After he was dx with cancer, we all arranged for him to fly a small plane as "copilot", but the pilot handed over the flying to him for several minutes! He talked about this for years! He beamed...As I read your note, I could see my Dad in your words...thank you for posting!

So very glad you had such a good experience. Don't dwell on the uncomfortable issues, but on the good times...sounds like you have many understanding, kind friends!

Glad you are back and all is well...congratulations on flying again! Made my day to read the happiness in your post! Jane

By ChiefsWife On 2014.06.13 22:00
Olpilot, your post touched me. You are indeed lucky to have loving support. It's important to hear a perspective from someone other than my husband. He prefers not to talk too much about the PD. So happy you were able to have a wonderful time.

Back to the original post; yes, I've noticed that often. People expect my husband to be worse. What they're basing it on I haven't a clue. I remember my Mom telling me the same thing while she was caring for my Dad with (what they thought was) Alzheimer's. She said more than once, "Sometimes I feel like I'm lying to people when I'm telling them how it really is but I know I'm not. I feel like they think I'm asking for sympathy for something that just isn't that bad." Now it's my turn to understand that feeling.

By Daybyday On 2014.06.16 21:38
Chiefswife.....I have been having this same issue. Telling hubby's family how different and difficult it is now living with DH and how he has been changing and I get the feeling that they think I am trying to get sympathy or something.
This is not what I am doing! I am just informing them. It is a strange situation I am encountering with them. Never dreamed
I would have an issue like this. My family
does not seem to be taking it that way.

By HangingOn On 2014.06.22 17:33
I have the same issue. Step son commented how he is getting better. Really? I stopped informing people unless they ask. I have noticed when in groups they ask me questions about subjects only he would know about. Not sure if they don't want to wait for his response or what. I usually look at them and then motion to my hubby. Sometimes in a casual meeting I stand back a little so they have to talk with him. It is tough to talk and discuss without it looking like I am whining...I was just trying to inform. But if they want to live in a pretend world, that is on them. But I have the feeling they will be the first to say I didn't tell them.

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