For those who care for someone with Parkinson's disease
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By Daisy123 On 2016.08.30 06:00
Sometimes just going along everyday, getting by, managing meds, mealtimes, living in our own special routines which have been determined so much by what our loved one is able/not able for, I think it's difficult to see the changes in our PWP.

We know that they are going downhill but we can only express it in the small events, something they can no longer do as well as they used to or not at all; something or someone's name they can't recall. A misplaced item one day that becomes a lot of misplaced items every day.. It is the sum of lots of little things that creep in on our loved ones but we don't notice them or disregard them or make allowances for them, in the hope that they are not as bad as we think they are or that it was just "one of those days" or the "meds not working right" and thankfully sometimes that really is the case.

But it's not.. really. It's this vile disease chipping away at the brain. Bit by Bit.

Last weekend, we stayed with Dh's cousin and his family who live about 3 hours away. They have always been close and it has been a tradition to visit every year.

This year I was able to see just how much DH has deteriorated cognitively, since his last visit a year ago. I could see how difficult it was for him to engage with them in any meaningful way. They were struggling to cope with him and because his cousin had cared for his dad with Alzheimers, he was honest in his appraisal of DH, which I appreciated. It was such a relief to be able to discuss with someone who has been there. Usually DH's own family spend 10 mins on the phone with him and tell me how well he "sounds".

I came away from the weekend saddened because putting him in a "normal" environment highlighted just how "abnormal" our everyday has become, but also rejuvenated with the companionship of wholly good and understanding friends.

Life is good... sometimes

By flowers12 On 2016.08.30 10:58
Sadly, I know just what you mean. These last few weeks have brought about the real difficulty to talk clearly. I tell myself, oh, the meds don't seem to be working so well lately, my honey is really having a bad day. I've had a hard time these last two years accepting what is happening and what will be. Facing it is overwhelming.

The drooling has increased, the runny nose, the blank looks, not understanding what I'm saying. We don't see any family much, or anyone for that matter. My honey's sister and brother-in-law live 5 minutes away but seem to avoid us. "Too hard to see him this way". Life is seldom joyful but when I can get a smile from my honey it makes my day.

By lurkingforacure On 2016.08.30 19:11
I just had this same bucket of water thrown in my face as well. My husband's sister recently came over for a visit and privately told me he looked "horrible". I know he has declined, but I was not prepared for her blunt assessment.

Just yesterday my husband informed me that he is planning to go on the extended family deep sea fishing trip at the family reunion in a few months. The thought of my husband getting up and dressed ready to go at 5am, and being on a boat miles at sea, ALL DAY, is beyond preposterous. Or maybe he will rally, and be able to do it, if he really wants to? I don't want to rain on his parade and tell him he simply cannot go, but I also don't want to ruin everyone else's trip. Any suggestions?

By LOHENGR1N On 2016.08.30 20:09
If it's not for a few months let it ride. No sense raining on any parades too early. In a few months like you say he may rally or he may not. As Robert Louis Stevenson said "To travel hopefully is a better thing then to arrive". With P.D. We know plans change. To hope and daydream for a few months might be a good tonic and really what do We's have left but hopes and unrealistic dreams. Perhaps it will turn out to be just what the family needs to witness to realize the effects of this disease. I myself would not worry about ruining everyone else's trip. Let them see what it is like living in our world, let them see modifications need to be made to accommodate Him at gatherings and not You and Your nuclear family to accommodate all of them. Just my 2 cents worth on the subject.

By mylove On 2016.08.30 23:09
Spot on, Al. In another post, when I feel up to it, I'll share something similar told to Ben by his physical therapist. It's a longer story, but boils down to the same thing.

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