the shortest summer, the longest winter

Note:
Folks who know us and see me often ask how Janis is doing. I don't have much to report because she is so advanced in this disease she is not presenting much to speak of. But since there are people outside of our immediate friends and family that don't hear personally from me, I'm offering this update of sorts.



The summer prior to Janis's placement, today seems as recent as only a few weeks ago. Its been years. It was a short and emotional summer. Our last summer together. The diagnosis was a 'rapidly progressing dementia'.
(So much for a rapidly progressing dementia). 

I wrote about this in the book ENTANGLED. But rereading it today left me bereft. I'm sitting at the computer and devoid of words to describe that day. The day I let her go. I let her down. The fact that I was recovering from a stroke that past Memorial Day weekend now seems like a weak excuse for that decision. 

I spent the afternoon with her yesterday. I gave her a facial massage with lotion, brushed her teeth, brushed her hair. I brought in some new earbuds and spent half an hour getting them set up. Gahh! I have little patience for anything in this digital world. But I persisted and we shared the earbuds. I had one and she wore the other. She only has partial hearing in her left ear. We spent the rest of the visit holding hands and listening to music. No discernable response. She looked at me occasionally, but didn't seem to recognize me. At one point as she dozed I let go her hand to do something and she reached out to grab my hand. I hug her and kiss her face and tell her I love her. No way to know if she hears or understands me. Hours go by. I watch her up face. I watch her sleep. Squeeze her hand and smile at her. When I leave I speak in her left ear (Not sure if she still hears or not she's lost all language and rarely makes even utterances.)

Lewy body dementia (lbd) is confusing to family members and friends. One reason is that a trademark of Lewy body is 'fluctuations' It means that things change often in the presentation of the disease day-to-day, hour-to-hour, for instance, they may bounce back somewhat and visit an earlier stage only to falter and continue in their decline. Where as, Alzheimers is generally a persistent descent. Some other symptoms of lbd, are Parkinson-like symptoms (shuffling walk, shaking,lack of facial expression), hallucinations, delusions, cognitive decline. Memory problems may start later. Over the past several months, and years, Janis has often appeared to rebound and visit to an earlier stage of the disease (fluctuations) only to quickly falter and continue in her decline. Not this time. The descent has been steady and observable. I'm still waiting to see her come back, but this has been a tenacious decline all this past winter. So we shall see.

It's storming today here on the coast of Maine. A light snow, and drizzle of rain at times. A raw, cold day.

That last summer together was brief. Janis and I are now in the longest winter of this disease. 

People who care about me worry that I'm not moving on with my life. To that I say, "This is my life. I'm doing it right now." 

I cannot really move on. There is this matter that I must attend to. We're not done yet.