I have not posted for many weeks because of practical and technical difficulties. The practical difficulties stemmed from an event filled December, including a week off, followed by less companion coverage in January. During this time I reflected on how my situation brought about some rash behavior in 2018. My time off did not rejuvenate me as a caregiver, but I gained insight for regaining composure in 2019.
Three years ago, before Cindy’s 56th birthday, I confided to people that Cindy may have two months or two years left. Two years ago Cindy no longer could walk on her own and I continued predicting she had “two months or two years left.” During 2018 Cindy’s further decline was minimal. She started the year with chewing and swallowing being her only capabilities, she ended the year the same way.
My assessment has changed because of the minimal further decline, now thinking there always may be another three years left. Before 2018 I apprehended whether I could handle whatever new challenges Cindy’s further decline would bring. Now I apprehend the growing sameness of my situation. Attempts to shatter this sameness caused my occasional rash behavior during the year.
Sameness crept into the projects that were keeping me active. New learning and critical thinking important for brain health gave way to rote learning and repetition. My two biggest projects during this final journey of ours are the American Discovery symphony and this blog. For 2019 and beyond I need to come up with more ways to keep things fresh, to learn and do new things with these two projects.
All five movements of the symphony were completed for guitar and synchronized with slides for many months now; all I have been doing is practicing the guitar parts along with the slideshow. For 2019 I will download music composition software and start to score the symphony. A score is the written language of music. Learning new technology and a language are both good for brain health. I look forward to getting this process started, under the guidance and assistance of my “thesis adviser” for this project, Kim Scharnberg.
Now that I think in terms of “another three years left,” I look forward to performing the symphony in 2019 in rough draft version, rather than waiting until final completion. I will start out with house gigs for friends and family that have helped us out over the years, providing me a social life which will be good for brain health as well. The first one will be this Saturday, for Dot Satherlie, a 94-year old dynamo who has come to visit us the longest. If you are in the area and want me to perform at your house on a future weekend let me know.
As for this blog, something needs to change with this as well. The growing infrequency of my posts during 2018 reflect the sparseness of new information about brain health or new inspiration from our situation to share. I have ideas for where this blog needs to go, both to benefit others and myself, but no doubt some trial and error will be involved. There is one inspirational post left I want to share; after that, we will see.
Speaking of the blog, one of the technical difficulties was advertisements being attached to the email notifications for subscribers. Supposedly, this should be remedied according to the advice given me by tech support, but I am skeptical. If you are a subscriber and still find advertisements attached to your email notification for this post, let me know. If you have not subscribed, keep in mind that subscribers will help convince publishers a book should be published about our final journey.
One of my rash behaviors in 2018 was rushing to get a live-in caregiver under the Caregiver Homes program, as we did once with our daughter Serena. The program offers the caregiver about $1200 a month of nontaxable income. I still hope to accomplish that for 2019, but with a more cautious approach. Experience is not needed as I will do the harder tasks. I am looking for a female non smoker. Friends or family preferred, but not a hard requirement.
May 2019 bring social, positive and active changes for you also. Live well.
