IT IS THANKSGIVING 2010. My daughter and I have driven 500-miles to visit Mary for the holiday. We are having a wonderful time. My daughter even brought her dog along to visit with Mary's dog Charlie. Mary is chipper as usual; always the life of the party. This time is no different, except that Mary is 87 years old now, and well... she has slowed down quite a bit over the last five years. She naps frequently throughout the day. We have managed to get her out of the house for a few dinners, but the timing has to be just right. Mary still enjoys her cocktails and her wine, but her appetite is diminished, as the joy of eating left with the dulling of her taste buds years ago.
This morning after breakfast, Mary asks, "Can I come live with you?". What? I can't believe what I have heard. Mary is so independent, and always vows that she will never live with any of us when she gets old and decrepit. In fact, she currently resides in a retirement community with living options ranging from single family homes to an assisted living facility. This is quite the shift in her philosophical outlook. Instantly I respond, "Absolutely, this is great, I have always wanted you to come live with us". This is the truth. I have wanted Mary to live with us for years now, and this is the moment that I had been hoping would present itself.
The next morning after breakfast, Mary asks again, "Can I come live with you?" And again, I enthusiastically respond about what a super idea it is. Eeeeerily though, I sense that she does not remember having this conversation multiple times the day before. It is a little unnerving because we had several long conversations yesterday about her move, with great detail on how we would proceed.
Tomorrow, my daughter and I leave to drive back home. Mary will stay behind for now, but I will take her dog Charlie with us. He is a spoiled rotten "only dog", and I will need to spend time intensely training him if he is to fit in with our three dogs and two cats. Charlie is so different from our dogs. He is barky and wiry and stubborn. He's a typical Westie! I also have some serious cleaning and rearranging to do before Mary moves in. Next month, I will go back for Mary. We agree that this is a trial move, and that she is free to return to her home if it does not suit her in any way.
I am so excited. Mind you, I am not naive. I know that this means that Mary will spend her final days with me until she passes away. I feel privileged for the opportunity to spend this time with her. But something is also disturbing me. Mary is not the same. There is a significant change that I cannot put my finger on. I know that deep inside, she knows that something is not right. Something has scared her enough to make her want to move in with someone. Mary loves her privacy, and she is willing to give that up.
Something is definitely wrong.
SHY DRAGERS SYNDROME - WATCHING MARY...
Mary was diagnosed with Shy-Dragers earlier this year. SDS is a rare progressive neurological disease for which there is little information. These entries are my observations as I watch the progression of Mary's Shy Dragers. If you are looking for details on what this means when caring for your loved-one, I hope they benefit you. May God Bless You.
Wednesday, October 12, 2011
Tuesday, October 11, 2011
SHY DRAGERS
My mother..."Mother Mary" as the kids call her, was diagnosed with Shy Dragers earlier this year. It has been disappointing to find that so little has been published about Shy Dragers Syndrome or Multiple System Atrophy. I personally do not like surprises. Having a glimpse into what the future might bring certainly won't change the course of events. But it can definitely help prevent that feeling of being completely blind-sighted, and it allows us to mentally arm ourselves with an appropriate response. Preparation always trumps retrospect.
I felt unprepared to care for Mary, since I could not find detailed information on the progression of Shy Dragers. These entries, therefore, are my observations of Mary as Shy Dragers progressed. I hope that they will be beneficial to all of you who also do not like surprises. I believe that knowledge is empowering; allowing us to handle circumstances with wisdom and grace. Nobody likes to be caught off-guard. Some of us just don't think that fast on our feet. So...here we go... Watching Mary and Watching Shy Dragers.
I felt unprepared to care for Mary, since I could not find detailed information on the progression of Shy Dragers. These entries, therefore, are my observations of Mary as Shy Dragers progressed. I hope that they will be beneficial to all of you who also do not like surprises. I believe that knowledge is empowering; allowing us to handle circumstances with wisdom and grace. Nobody likes to be caught off-guard. Some of us just don't think that fast on our feet. So...here we go... Watching Mary and Watching Shy Dragers.
Labels: SHY DRAGERS, MULTIPLE SYSTEM ATROPHY
M.S.A.,
MSA,
MULTIPLE SYSTEM ATROPHY,
NEUROPATHY,
ORTHOSTATIC HYPOTENSION,
PRGRESSIVE NEUROLOGICAL DISEASE,
S.D.S.,
SDS,
SHY DRAGERS,
SHY DRAGERS SYNDROME
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