I’m sitting with my mom for several hours this morning after a very early drive to Kahala from Kaaawa.
We scheduled this so my sister could attend a meeting at her church in Aina Haina. It’s the same church we both attended as kids. Bonnie became active again as soon as she moved back several years ago to help care for our parents. I haven’t been there for decades except an occasional visit to the thrift shop with Meda.
In any case, this is not pleasant duty today. My mom has been nauseous, complaining of pain in her neck, and zoned on some combination of meds that I’m not fully up to speed on.
We are in new territory. She was approved for hospice care a week ago. It means she can stay at home, and there will be more support for her as well as for my sister, who is on the front line in daily care. This week has been filled with the initial round of nurses and medical evaluations, the first visit with the social worker, a new round of medications, and lessons in the hospice routines and case management.
Her condition in the past week seems to have remained in a narrow range. On a good day, she can get from her bed into the living room on her own steam with the aid of a walker. It takes a while, and might be touch and go, but she can do it. Then she occupies her regular chair and goes through the motions of looking at the day’s mail, or digs into one of the stacks of miscellaneous papers accumulating at her feet. I don’t know if she is actually processing the information. I can only hope for the best.
She eats, although not enough to fuel a 10 pound cat. A bit of fruit, cut up and waiting in a dish. A couple of spoonfuls of poi. Soup or broth. Juice. A partial cup of coffee in the morning. Part of an english muffin. On a good day, she drinks enough fluid to ward off a second bout of dehydration like the one that put her in the emergency room several weeks ago.
Today is not a good day.
She is sitting up in a spot on the sofa in the living room. A glass half filled with water sits near her right hand. She’s wearing a “world’s best mother” nightgown under a worn, deep blue fleece jacket, a dark green blanket across her lap, well wrapped despite the warm day. She’s here, but her mind is obviously floating in a very different space. This is something new, and I would guess it’s purely chemical. She’s switched several medicines, and some adjustments obviously have to be made.
In the short time I’ve been here this morning, she has already had a couple of brief conversations with herself regarding some obscure genealogical reference or family link. “Cousin or nephew?” I hear her ask.
Meda thought she heard the word “obituary.”
I walked over to in front of my mom, who looked up, but seemed to stare past or through me without seeing.
She then seemed to doze off while sitting up, then appeared to be dreaming, or living out a dream. Once she looked up, eyes opened, and suddenly launched into a slightly garbled rendition of Hawaii Pono’i, struggling to find the words and string them into something close to the right order. Then the lights went off again, her eyes closed. In a minute, she rubbed her neck, then nodded off again.
Later, she appeared to be acting out eating something. Her hand went to her lap, feeling along an imaginary table, her fingers curled to scoop something up, made the slow trip to her mouth, and then she chewed, slowly. It was like watching kids acting out a tea party. I waited, then asked gently if she would like a spoon of poi. It startled her. She shook her head, “no.” Dream trumps reality.
Parts of her body hurt. Arthritis in her shoulder, the hip that was replaced when she was a spry 80-year old. I know there are other sources of pain. She rubs her neck repeatedly, grimacing as she does. I tried several minutes of massage, repeated at intervals. It doesn’t seem to offer any relief. My instructions were to give her a pill for pain about now, but in light of her current mental confusion, possibly a reaction to other meds, I’m holding off.
Then she appeared to decide to move. The process of deciding took time, then she reached out, fumbling as she tried to get ahold of the walker parked in front of her. I offered to bring the wheelchair. She shook off that idea, got one hand on the walker’s grip, then the other.
When lucid, she has repeated said that she doesn’t want to be treated as an invalid. Today she isn’t lucid, but clings tenaciously to that idea. She wants to get around on her own, at least nominally.
Getting upright is difficult. Today she could not have done it on her own. But the two of us got her vertical, and, very slowly, she released the brakes and began to shuffle in the general direction of her bedroom. I stood close by, nudging the walker past obstacles, prepared to react if she fell, not sure whether she could manage this physical feat. She managed. First the eight or nine feet to the door into the hall, then a shuffling turn towards the right. Bedroom now straight ahead. She faltered once, staggering backwards, almost falling. I caught her and got her upright again. Then she finished the job, getting the final ten feet, remembering to lock the brakes, turning and pivoting next to the bed, then sitting on its leading edge, finally shifting herself towards the pillows and sort of falling over into sleeping position, legs following.
She has powered through many of the crises of aging, but at 98, life is catching up with her. I doubt that she’ll be able to go into her yard again, or water the plants that she has cared for over the 70 years living in this house. She climbed into the larger of the two mango trees well into her 80s, but now the few steps down from the house to the lanai are probably an insurmountable barrier.
She has outlived all of her friends, experienced death many times over, and prepared detailed directives on what to do, and not do, when it is her turn. She has prepared for this quite deliberately.
It doesn’t make this long moment any easier.