Not all days have high drama; outwardly today passed quietly. The event that mattered occurred across the day: the Admiral was very poorly after yesterday afternoon’s ordeal at that Kaiser Tysons Corner medical center. A friend on-line told me about “worse the day after” phenomena. A friend of hers for whom these trips out for tests and to doctors were disastrous was able to obtain gov’t paid home visiting nurse services (real ones, who actually take care of the person, not the kind we are getting from Hospice who show twice a week, take blood pressure and temperature from the stranger sitting her, then stay on to fill out forms galore and then leave); she said these services are among those cut whether recently or even not long after instituted hard to say. (It cut into someone’s profit it seems.)
He tried to get up and stay up for a while, but found he couldn’t. He wanted to dress in regular (not athletic pants) and found he can’t any more because while he’s much thinner his waist has swollen so he can’t close the pants with ease. He managed one glass of milk and 3/4s of a glass of boost (a liquid formula containing lots of calories and some proteins after I pressured him into it), and of course water. He does drink water because he’s often parched. his voice is so hoarse I can hardly make out what he says sometimes. He slept on and off most of the day and now this night. I gave him his medicine when he was supposed to have it, helped him walk. He was not in actual pain, but was nauseous now and again. That’s why he can’t eat. Everything tastes bad.
This it is to have cancer in your liver — and many other digestive organs too, or the bone, and other places. The caregiver seems to be someone the society assigns or who assigns him or herself to watch the beloved (if the patient is lucky) person slowly die. Unbearable is what I find it at moments.
I had another visitor from the Hospice people today. Yesterday a kindly social worker who is also a psychologist came and we had an hour’s talk and she managed to allay some of my anxieties. If my computer software doesn’t work I can hire for a year at a time services from a Geek Squad at Best Buy. I’m eligible for grief-counseling from Hospice (support group), I hope for free. Whether it’ll be any use I can’t know. Today a woman who manages the volunteers who can come and stay with the Admiral for a couple of hours at a time if I need or want to go out. Whether I’ll get any services remains to be seen. She looked about the house and was the first person I’ve seen in a long while to at least seem to appreciate what a beautiful home the Admiral and I built for ourselves to share: rich in books we continually journeyed through, our favorite picture on the wall above the mantelpiece (a black-and-white print of an Alma Tadema of a group of later Edwardian figures listening to someone read Aeneid is the conceit), a nymph on a rock on the other side of the room. How will I sit here alone? We had a comfortable chat about ourselves I’d call it for nearly an hour and this did help me through the middle of the day when posting to the Net and most comments are over. (How people imprisoned in solitary confinement stand it – and for as much as 40 years so crazy are the cruel sentences — I can’t imagine.)
Yvette was home at 5:30 and I went for a walk, and around 7 we made ourselves supper: spaghetti with left-over chicken. We listened to marvelous Irish music on her i-pad through a podcast. We talked of what happened to her over her day at work. The people at her office who handle retirement (and widow’s pensions) have offered to spend a half hour or so with me, but they have not yet set up a time. (I saw a lawyer and financial adviser last week for 2 hours.) I can’t say none of this is real; it is all too real. Stark. I feel it starkly.
My mind casts about when I am not working on my one film project, which goes very slowly. I knew I took a chance, bargained with luck when I fell into a relationship with the Admiral where when I lived with him in his way I knew great happiness and a sense of safety and peace with him, real companionship, enjoyment together as we shared tastes, political outlooks, knowledge (books), but that if I should ever lose him I would pay the price of relative isolation (the Net has changed this some) and dependency. I hoped intensely we would die within a few years of one another, and while I knew statistics were against it, since I have a couple of serious complaints, maybe I would die first. I even retired last year when things at GMU were becoming harassing and what a happy year it was. I didn’t realize how much time I really did spend teaching. We did the attic, the bathrooms, flower beds, and just lived our days and nights together. He dreamed of maybe 30 years. He said the statistics allowed for this.
It’s not only not to be, it may be I have 20+ years ahead alone (if I manage). I think I would like to try and live on, with and for Yvette as well as myself, finding pleasures again in books, writing, maybe small trips (I had just had a couple of fledging attempts alone), but there is so much I am unsure of, don’t know how to do. Caroline is helping here, but how frightened I feel.
I am glad I know how to drive, someone invented the GPS and it’s in my car (though it leaves a lot to be desired) and by luck and Admiral and I had gotten me a new one, PriusC, cheap on gas, this past February.
I have listened to the night’s silence for so many nights over the past couple of years — for the past couple of years he has been going to sleep by 9 or 10 at the latest. It’s nearly 1 in the morning now.
The pussycats are asleep in the front room. Early in the evening after supper I fell into a sudden sleep watching DemocracyNow.org and had a realistic dream which upset me very much. I thought as I woke I had to go to the hospital with the Admiral, and rushed about feeling trauma, but when I saw Yvette at her computer watching ice-skating, her TV on at the same time, and went to ask her how shall we do this I gradually realized I had fallen asleep and none of whatever happened in the dream (now a blur and confusion in my mind) had not occurred. What a relief.
I just finished an intelligent film from Netflix: Marlene, a documentary interview of Marlene Dietrich in 1984 by Maximillian Schell whose surface was made up of a collage of her movies, filmed concerts, appearances, photographs, not chronologically but thematically put together. The story of a successful professional star, her personality opaque to herself.
Now I must force myself to go into the back room and sleep in the wide bed next to the Admiral’s reclining one. I know within half an hour the cats will join me.
One of the people who has commented on this blog recently spoke of her mother left alone after a life with a man similarly lived. Some friends have written me off-blog, one who lost her husband to cancer said she felt what I am going through and how lonely it is after such a life — they were academic musicians together, had many more books than the Admiral and I, had bought a retirement home on an island. She may still have had her job. How shall I manage independent scholarship alone?
How I wish this cancer epidemic could break through to the wider consciousness of American society. Word of mouth knows it’s so, many people’s dreadful experiences, ruined lives, with here and there the lucky survivor, but with the control over the news on TV and in the newspapers by oil, gas, pharmaceutical and insurance companies, what chance is there that a campaign can start with funding and effective acts and lobbies. Some huge number of people in this country want and have organized for gun control. Little exists. Ditto for a decently humane health care system. I have no one to confide all this to so I do it here to myself hoping to reach friends. And again if my blog catches attention because I am really telling it like it is, I shall have made a small contribution towards an awakening that something needs to be done to find a cure (however profitable these anti-cancer centers are) and to de-toxify our air, water, food, and thus decrease immense human suffering.