Christmasdowntime, 2021-2

            Writing seems to be a struggle right now; I can’t seem to finish a regular-length blog; the reality of circumstances sometimes is a downer. Of course, the Winter by itself can bring many of us down.  For me, the duration of the Alzheimer’s process has grown burdensome.  We have dealt with this around 16 years since diagnosis; and I knew she had it before then.

            There is a lonesome feeling around the Winter family holidays.  I am fortunate that my son is around nearly every day.  Many other family members came to a family gathering.  I talk to others.  Yet the person I would want to be with my family (and hers) is lost to all of us.  She is living but not able to come; luckily she does not know that she is missing such a gathering.  Strangely, the time with Covid cemented this particular outcome, but it will not be undone when Covid is no longer an issue.  She will not gather with family outside of her facility.  She will likely never be out of her place for a meal or a concert or church.  The wheelchair makes going out much more difficult, maybe possible.  I could not manage outings by myself. 

            She is generally content and mostly happy.  She works at conversing, but rarely makes any sense to me, hard as I try to determine what she means.  I have regular short visits, for an hour or less.  She knows who I am and wants to interact.  She has no voluntary travel, either by wheelchair or on foot.  She must be eating reasonably well; she lost weight several months ago and seems to have rebounded to nearly normal. She still sings with the musician who comes regularly, and sings with me sometimes when I play a familiar song (like “Jingle Bells”) for her.  The words of songs are gone, but melodies and harmonies are still there.  Other people report that she shows strong sociality, wanting to interact with others.

Many people have stronger reasons than I have to be sad, including those who experienced death of a spouse or of someone else very close to them.  And there are many prolonged processes for some we love, including cancer.  For me, this is an experience of death.  One friend suggested that I am not far enough along with grieving, but it is not clear how to get grieving over with.  She is still here, and still possesses a humanity that is unmistakable.  Yet at the same time she is NOT here.  Thus grief continues.  There is no simple exit from this ambiguity, as discussed in earlier blogs.

Soon I will return to writing about caregiving—with a variety of topics, many of which are in progress.  I know it appears that I am asking for sympathy, but that is not it.  I hope many of you are reminded of what has happened to you and to others—perhaps through caring for someone with long-term medical issues or dementia.  And that you remember the value of your efforts, the value to the one you cared for and the value to your own spirit.  Empathy is what is needed—for me & for many others, though empathy is hard to communicate.

Christmas is here; whatever your beliefs about life and about death, we must love and support each other.  Caregiving is an essential element for humanity and a core aspect of most religious systems. “God bless us everyone.”