I have been writing here on Substack for 8 revolutions of the Moon around the Earth. And Mom has been mostly in bed for the past 8 days. Or more. I want to tell you about Mom’s current reality. How her eyes look like she’s a trapped wild animal sometimes and every once in a while, when she is calm and quiet, you have a moment with her. She may reach and touch your hair. She seems to know you even if she can’t say a word. Or, so rare, a whispered phase has come from her like a body memory, fully formed and unexpected. The words recognizable, but jumbled. Then she reverts to no language at all, just air through pursed lips and she is no longer calm and able to meet your eyes.
I started writing this yesterday and it’s not entirely true. I haven’t counted the days so the 8 days is more of a poetic choice than an accurate one, but she has declined significantly in the last couple weeks as to mostly be in her bed.
Mom has always meticulously cared for her body. Regular baths, exercise, years of yoga and weightlifting. She was active, gardening and walking and hiking. She regularly visited the doctor and the dentist and when she did have trouble, with her knees, she was diligent in following the prescribed exercises. Most of these last few years you couldn’t tell by looking at her that there was any sort of diagnosis. Bill/Will helped make that all possible. Their life was organized and designed around routines that were good for both of them. Only the past couple years was a slow, creep into her not being able to keep up with her own care anymore. Rachel and I started taking her out to buy outfits. Getting headbands for the ease of doing her hair. And Becka took her out to get new bras. She would forget to smooth her make-up in and eventually stopped doing it altogether. At some point she was unable to put in her own contacts anymore and she started only wearing her glasses. Last summer culminated in behaviors that were really difficult. Anxiety that had her roaming the house, desperation to not be separated from Bill’s side. And even worse delirium and anxiety. And so commenced the eye surgeries. For a while she was able to come to my house for tea and head down to the farm for a visit and then eventually unwillingness to leave the house at all. She remained able to descend the stairs to the dining room to have meals with the family. Until very recently.
Oh and she could take on and off her shoes. Fairly obsessively, like she was caught in that behavior. There were many other obsessive behaviors around clothing and smoothing her sheets and cleaning her nightstand that I have neglected to mention. And if there is anything important, I hope that my sisters and Bill would feel like they could chime in here. And that all got us to this spring/summer, when she became incontinent.
Now this past week she has no longer been able to sit up to eat by herself. There is a question whether that is due to infection or is her regulatory system more impaired. She has had unexplained swellings and hot areas of her limbs leading up to this. She is unable to tell us what is going on, but sometimes you can see panic in her eyes. We all want her to be as comfortable as possible. We are treating with antibiotics as if she has an infection without knowing for certain and time will tell if she rises from the bed and feed herself again. If she will still take pleasure in food. And the difficult and confusing question remains, what kinds of interventions are too many?
To begin this new moon period, I have been going back and re-reading what I’ve wrote since this began last January. I have been light editing when I find mistakes or things I don’t like, adding photos here and there and reorganizing the place a bit. I have had the ever-helpful feedback of my sister Becka. My thought that I would use this lunation as a chance to go back and gather some threads together, spend some time finishing up things that have been started and return to the podcast, which I have been neglecting since my travels, but life has thrown in some curve balls and continues to do so. If there is anything to share with you before the first quarter moon next weekend, I will do so in the comments here. In the meantime, I invite you to share anything you wish there as well. Also feel free to pass this on to others who may be wondering about Mom. We appreciate being in your thoughts right now and even more we appreciate all the love you send our way.
So much love to you. Tina
I‘m so incredibly sorry to hear about this. I talked to Rachel about Carol the other day and it saddens me so much to hear about her condition. To me, she still is the grandma I never had and a woman I learned so much from. The love she’s given me from day one will never be taken for granted. I am sending so much love, hugs and strength to all of you. Thanks for giving an insight, Tina. Wishing I could be there in person.
Love,
Rina ❤️
I am so sorry to have lost touch with Carol and Will but they will always be two of my favorite people to have crossed my path called life. Carol was such a sweet accomplished woman and we loved spending time together. I had always hoped that she wasn’t getting worse and so sad to hear of her deteriorating condition. She loved her family so much and was always so proud of them. Sending love and hugs to everyone. Diane and Bob Wagner