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.

Saturday, July 25, 2015

These are my comments to friend Kate Swaffer on her blog which is written from her point of view as a person who has Dementia. Gregory was never able to give me this perspective so I value hearing from and sharing Kate's journey as she so articulately and eloquently writes.

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As always Kate, thanks for your beautiful view, open, honest view of "life on the other side" which could also be called "the right side" or "the best side" or "the it is what it is side" or "doing what's right with the best side you've got." Or I go on!!!

What an adventure you had. Be sure to allow recouping and reentry by taking a vacation from the vacation. We always took a week or two to rest up and regain ourselves after a hectic, extended trip. Enough advice from me! Done with love.

Gregory and I said from the beginning when we received the diagnosis: "We have a choice. Lie down and die or hunker down and keep going." We hunkered and never regretted the choice.

To quote the article on "The Australian Journal of Dementia Care" on Prescribed Disengagement: "When Kate Swaffer was diagnosed with younger onset dementia, she was advised to give up work, study and life as she knew it, put her affairs in order and investigate aged care options. Instead, she ignored this ‘Prescribed Disengagement™’, as she terms it, and reinvested in life – something she recommends to everyone who has been diagnosed with dementia."

In some ways Gregory and I did both. We Disengaged from everything that was a should or ought or a "have to." We gave up life "as we knew it" after studying it and getting rid of the parts we just didn't want to waste our time on! We "triaged:" DUMP these activities in our life, KEEP these, THINK about these and decide later.

We closed Gregory's architecture firm realizing we could survive well enough without working and that the time spent at the firm was "for others." We wanted our time to be spent "for ourselves."

We traveled the world, we subscribed to theater seasons, and went to the opera. We entertained, we increased dinner out with friends, we made short trips around the area. We sold our rental property, the architecture studio, our home (which was all part of the same property collective) and bought a more efficient, smaller, lovely condo in the heart of downtown Evanston, a small city just 30 minutes outside of Downtown Chicago by METRA.

At the same time, we spent time creating a life that would be easier for Gregory to manage. As he needed, I was able to do more and more for us. I got our financial and legal affairs in order, which was no mean trick being a same-sex couple without any protections under the law. I learned how to take care of me so I could better take care of him as the needs increased. I strengthened our support base with family, friends, doctors, therapists, specialists, caregiver companions, etc. I studied the disease and researched our options. My work allowed Gregory to have wonderful days filled with love and things he wanted to do, not things he had to do!

Basically, with the diagnosis, with the knowledge that it gave us, knowing that time was more important and limited, we reinvented ourselves as we would really like to be: not based on expectations from our earlier selves, or family, or friends, or community, or society.

By both "giving up life as we knew it" and by "creating the new life we wanted to live," we lived "Happily Ever After" and are still doing so even with the progression of Gregory's Dementia/Alzheiemr's and both of our ages:-) We are good! We carry much JOY even though it may be on the shoulders of SORROW.

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