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Topic "They just don't understand" Go to previous topic Go to next topic Go to higher level

By makrivah On 2015.09.09 21:06
I had that moment today when a dear friend said she had seen my husband and he was not trembling at all. Then asked "Is he getting better?" Since she is such a good friend, I asked if she had time to talk. She did. She sat across from me for over an hour as I explained the changes and challenges he/we face every day as well as the inevitable future. She asked good questions. As the conversation deepened and she grasped the magnitude of PD she started weeping and trembling. She, like so many others had NO idea about PD, thinking it was just tremors. As we wrapped up our conversation, she was transformed into someone I can lean on and call on whenever. My burden seems a bit lighter tonight.

By LOHENGR1N On 2015.09.09 22:37
Mak, thank you for posting this. I'm glad you were able to explain to your friend and explain in a way they understood. You have helped the Parkinson's community in a way that benefits all. You now have an extra pair of ears to hear your troubles, shoulders to lean on and another voice to help explain. You have become an advocate for PWP and caregivers. Your hour talk, like tossing a stone into a pond created ripples, from you to your friend and on to others who she touches or talks to, to help explain and educate people about Parkinson's disease. Again I want to thank you for inviting your friend into "our world" for a time, to take the time to reach out like you did to your friend. After reading your post my friend I will go to bed with a smile on my face because We, PWP have a new advocate educating and speaking for Us.

By ResistanceFutil On 2015.09.10 09:04
Lohengrin said it all, and I also want to thank you for educating your friend.

I don't feel that my husband's adult children fully grasp his situation, now made even more poignant with the MSA-P diagnosis. I'm not sure it's my place to open their eyes as losing a parent or seeing a parent worsen is so difficult and prone to denial - I speak as one who watched the illnesses of my parents.

Maybe they will meet someone who can gently let them know what is in store for their father so they will make even better use of the time they have left with him.

By makrivah On 2015.09.10 12:31
Al, thank you for your kind comments. It's a tough call deciding when to advocate. Sharing PD information at the wrong time or with the wrong person can be disappointing when that person turns away without trying to understand.

ResistanceIsFutile (I adore your screen name), my adult children are sensitive to their dad's situation, but don't like to hear about incidents or the almost day by day changes. I edit what I share.

By Lynnie2 On 2015.09.10 13:41
I am just the opposite with my adult children. I share almost everything about their dad and it gives me some relief to know that someone cares and to know what I am going through.
They don't live anywhere near us, so I can text now and tell them what is going on.
It is getting harder each day as he gets confused about things.
I also have friends who listen and understand, but you can't always call them and they don't text, so my kids are my shoulders to lean on.
They supported me when he had surgery this past winter, and even took the week off so I am thankful to have good kids.
Mak I am glad you made a new friend to talk to about things and hopefully other people will realize that Parkinson's just isn't about tremors. Those are really the least of my husband's symptoms as it affects so many other things with him, and I am sure others feel somewhat the same.

By umajane On 2015.09.11 00:21
Today I wanted to sit down and talk with a friend of over 50 years about how things are going with my husband and to discuss the dementia part of PD.
She was just to busy to find time and rattled off about all her events, vacations etc and that she might have time in a month or so.....
If the tables were turned I would have been in my car and at her house in 15 minutes. I am disappointed and can now see who my friends really are and who really cares. It saddens me how self centered some people really are(although I have known this for years).. I am more sensitive at this time too.
Luckily for us that are grown kids are really loving.. They are busy with their big families but I know they truly care and that is what really matters.

By LC On 2015.09.12 15:20
I sometimes think that people do not want to hear about my husband. I think it frightens them to think that the same thing could happen to them.

By jcoff012 On 2015.09.12 21:00
Jane, a much shorter version...my first response locked up my computer!

I have come to accept that being alone and having a great deal of time with little or nothing constructive to do is the bane of every caregiver. Try as we might, our families and friends simply have their own lives and problems.

I also know that I will be alone sooner than we planned. This is far from the life we had planned..we both retired early! No antique shop, no floral shop, etc...all that is too complicated now.

But, we have each other for now. He may not be the man I recognize as the young Marine I married, or the strong, virile Dad who helped me raise our four children, but he is still there...now and until we say good bye.

As for friends, and I include family, this disease is just too hard to handle unless you know of it first hand. Try to forgive your friend, she just simply doesn't "get" it...she is still your friend..love always, Jane

By umajane On 2015.09.13 01:39
Jane. That was beautifully written and right on. Thank you for the perfect answer. I get it but when I'm really sad and frustrated I don't if you know what I mean.

By VioletV On 2015.09.13 09:29
I too feel that isolation, and loneliness. And the risk is that when I talk to people who don't share this caregiving experience I am just so eager to be the center of my own attention that I spill way too much. I'm usually a good listener, but anyone who asks "how are you?" risks getting hit with all of what I've been holding, and juggling and finding-a-way-to-be-OK with. I'm very lucky (in a sense) that my daughter is in the midst of tough stuff of her own -- we talk or text late at night and can be pretty clear to each other about who needs the floor most.

And now I'm bracing myself for the onset of real dementia in the next year. As winter closes in I'm afraid that this my be my husband's last year of being in touch. His older daughter is coming in November for a family birthday- and I hope it's OK to wait until then to talk to her in person about her dad's status. And what do I say to the 16 year old? Parent's Weekend is at the end of the month. We'll visit her then.

Never fun, never easy...

By jcoff012 On 2015.09.13 11:45
Jane, of course I understand the frustration and the "feeling sorry for me" days...but, I seriously try to not dwell on them....I figure Carl has it far worse than I, so if he handles it, so must I.

Sometimes I think that he and I will not have to face all the late stages of this disease, as we have been so lucky this far. Then the reality sinks in and I know what is coming...

Here's an example...just got the water bill...$220 for one month! Normally $90...that's California for you! After investigating, he found that he programmed the sprinklers to go off FOUR times a night! This is significant because it is the second time he could not successfully program a simple device...to him, it was devastating to KNOW he is losing his attention to detail, etc.

What did I do? Laugh! I told him it is only money and we have one of the few well kept yards in this drought! Lolol

Hugs and as Al says...hang in there! kNOW those of us here understand and want you to know that!

By Trusting On 2015.09.13 12:43
I'm glad I have all of you that understand. My friends, family, acquaintances don't understand either. Truthfully, I didn't either. I thought it was just tremors too. If I had known more it would have been diagnosed earlier b/c he was having so many symptoms and very slight tremors. The doctors didn't even catch it until I mentioned it to them.

Friends and family don't understand that we can't make plans b/c we never know one day to the next how if my husband will feel good enough. He has been going through a really good spell right now but I know it won't last very long.

I think it is hard on others to see my husband going down hill. Maybe it causes them too much pain. What ever the reason, I sure am glad you all are here.


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