PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.

Wednesday, March 18, 2015

Awarenesses I Have Gained

A dear, dear family friend, BD, has helped me greatly through the Alzheimer's Journey that Gregory and I have been on for ten+ years in ways she cannot imagine and I am grateful to her.

BD started as a close friend to the Maire Family, her mom and Gregory's mom being close friends. Several times when Helen was visiting us, we would take her to visit BD's mom who lived an hour or so away in a far Chicago suburb so we got to know her as well.

BD's husband LD was diagnosed with Alzheimer's shortly after having completed his late in life doctorate and approximately ten years before Gregory was diagnosed with the disease. BD was the first family person I "came out" to about Gregory's diagnosis and from that day forward she has been a role model, advisor, and supportive friend to me.

While LD's journey was as unique to LD as Gregory's is to Gregory, there is a universal commonality that exists. As I watched, and heard about, and shared with BD about LD's progress, in years later I could compare with what I remember of BD and my conversations to what I was experiencing with Gregory.

One thing I could not understand was why, when LD was finally living in a memory care facility, BD felt the need to spend so much time with him. Another was why when LD passed away, she felt more grief than relief at his no longer being in pain.

Now I understand. Visiting Gregory every day is such an important big part of my life and when I skip a day, I do not feel guilty but rather that I have missed an opportunity to spend time with him.

And while it is not my job to decide when it will be time for Gregory to die, I freely admit that I wish him a speedy death if only for him not to have to suffer too much through the end of his life.

But, I also desperately want to hold on to every moment that I still have him. To hold his hand. To tell him how much I love him. To hear him say, "I know." To have him unexpectedly lean in towards me and whisper, "I love you so much."

I dread the day he will die and I will not be able to see his face, or hold his hand, or laugh with him, or cry into his neck, or feed him a bite of dinner, or give him a drink of water, or offer him a piece of chocolate.

Then it will really become painful for me to have to start living fully again. I am living pretty large right now with my writing, visiting Gregory at Lieberman, planning a Spring Carnival for the residents in his facility, working on my manuscript of our journey with Alzheimer's, with working on the possibility of creating a second museum of miniatures, producing and being Master of Ceremonies for Michael's Flea Circus, and celebrating my 70th birthday.

But I am  not living fully! I carry Gregory with me everywhere I go and in everything I do. Perhaps carrying him around within me after he is gone will not be as painful as I expect. But I do dread the day.

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