Ch. 9 Questions for the New Year: 2019 and then 2020
Note: This essay was originally written in early 2019, then updated at the end of the year.
A new year has just arrived – 2019 to be exact. Pat’s been seriously ill for two weeks now. Little oxygen in her lungs. Total fatigue. Pain everywhere. Stronger hallucinations sometimes, too tired even to hallucinate at other times. Twice I thought she should be hospitalized, but instead she’s on powerful antibiotics and home rest. Finally, she seems to be getting stronger.
As we enter this new year, I have two related questions:
- 1)Will Pat’s medications continue to work as well as they have been? The doctor said they would work for “years.” If so, then that gives me more confidence regarding the second question, namely:
- 2) Will we be able to maintain our current lifestyle through another year? Long, quiet drives in the Wisconsin hills. Family time with our children and grandkids. Jigsaw puzzles. Monthly support group meetings in Eau Claire and St. Paul. Hallucinations only at night and in the morning. Both of us writing in this journal. Going to our book club together. These simple activities are precious – and very, very fragile.
It’s hard for me to be optimistic with Lewy Body. I keep hearing about the “inevitable” decline from some individuals in my caregiver group. The 5-7 year life span after diagnosis concerns me. But what gets lost in that kind of “down the road” gloom is what goes on daily. I admit that every day I breathe a little sigh of relief when things stay the same. And, once in a while, when Pat has an exceptionally good day, when she is thinking clearly, available emotionally and full of energy, I hope for a cure. Maybe someone will discover a medicine that will bring her all the way back. But, frankly, I’ll gladly accept another year (or ten) of what we have now.
All lives are fragile. Lewy Body makes you never forget that reality.
It’s been one year since we wrote these thoughts. Here is an update. First, I’m relieved to state that Pat’s health has been good this year. She recovered fully from the illness I mentioned at the start of this chapter and has stayed well since then. I can also say that Pat is still functioning at a reasonably high level. Of the list above I made of things I hoped we’d continue to do we are still driving in the country, writing in the journal, spending good time with our family, and going to all our support groups. Only 1,000 piece jigsaw puzzles have become difficult. But that’s not stopping us -- we just purchased and enjoyed completing a 300-piece puzzle. Setting off that small loss, though, is the exciting fact that Pat has become a regular member of our local memory choir; I love hearing her sing again, something she hadn’t done for years (Pat has a beautiful soprano voice).
However, we agree that there are some signs that could signal troubles in the future. Pat’s hallucinations are occasionally lasting longer in the morning than before and she has mentioned that sometimes she feels confused, as if the world just doesn’t make sense. All in all, though, I feel grateful for a good 2019 and hopeful about 2020.
Pat’s comments on Questions for the New Year: 2019 and then 2020
I disagree with Ron’s thinking here. His comments so far are ok. But some of the time I don’t see his understanding being so complete. I do agree that all our lives may be fragile, but a partner who sees and accepts what a person can do for themselves, is valuable to me, and often cherished. What I’d prefer is for Ron to focus more on what we have and less on what bad things might happen. I’m not going anywhere.