Wednesday, April 28, 2021
My aunt loves roses and grew them in her backyard in the desert. (There are heat resistant roses available; a neighbor of hers once insisted on growing English roses, spent a fair amount of money on them and then watched them die in the heat and relentless sun.) Her friends who have come to visit have cut and brought the blooms with them. The living room smells of roses.
Yesterday she developed chest pain, likely due to the tumor infiltrating into her chest wall. She is now on regular doses of morphine and benzodiazepine (for the anxiety and agitation). Hospice is coming daily. She is taking liquids by mouth but very little food.
We vacillate between long hours of nothing as she sleeps punctuated by a concerted effort to get her to the toilet, calm her, change her clothing. I pass the downtime by cleaning the kitchen and clicking from Facebook, to Twitter, to email. The house is hushed. It is a waiting game now.
I hope her passing is peaceful.
Thursday, April 22, 2021
The Dying Patient
They don't tell you what it's like to be with someone who's dying. As in, being there all the time, day in and day out. Sometimes I wonder if even the hospice doctors and staff know. It isn't that they are not kind. But the nurse, who currently is coming twice per week, checks vitals and asks about bowel movements - "Do you have any questions?" and then she is out the door within 15 minutes. I do not say this to criticize, as I have done my share of such visits. But after a while it is hard to know what to do or say, how to pass the time when not focused on such minutia.
My aunt is suffering. Not to say that she is in pain, but she is a very social person and has always been someone who likes to stay active and do things. At holiday dinners, rather than sitting around with a cup of coffee she was always the one cleaning the kitchen or getting the meat off the turkey carcass. Now she is too weak to walk and too confused to focus. She cannot get much enjoyment from reading; cannot remember which of her friends has called her from hour to hour. Her sole consolation is conversation and I am not the best source of that. I have tried to think of entertaining topics but have long since run dry. My father is too demented to talk to her and my mother is too hard of hearing; plus my aunt has suffered vocal cord paralysis due to the tumor and can barely make herself heard.
Two days ago she told me she wanted to pursue assisted suicide (I think the preferred term is "assisted euthanasia" these days). Her first discussion with the hospice doctor is scheduled for tomorrow. I don't see how she could not qualify, I just don't know whether she will be able to last the next two-plus weeks until all the criteria are met. We should perhaps have discussed this sooner, and I feel badly about that now. I told her that once again she was a groundbreaker, as she has been so often in her life.
She was raised in a small Southern town and went on to teach as a career - not much else was open to women in those days. Her first marriage, the product of elopement, failed shortly after she moved to Alaska (her husband was transferred there). She went on to marry again, and eventually left her second husband for a female partner. That relationship lasted 25 years. She successfully fought cancer once and then developed lung cancer more than ten years later. She has traveled, volunteered, has made many friends and excelled at entertaining them.
Religion is not a consolation for her, she puts her trust in friends and enjoying life. She has outlived her prognosis by nearly three weeks, but I don't know how much longer this is going to go on. All I can do is to be here, and it is humbling.
Monday, April 19, 2021
Back I am at the blog, in search of counseling. Did I mention that this blog serves as my makeshift therapist? I visualize it as female, of no particular appearance, leaning forward, professionally caring but geared to forcing the truth out of me.
Then we sit and look at whatever this truth is.
Well, (I brace myself,) the past month has been a little tough. It's indisputable that my father's dementia is getting worse. His sister called last week to speak with him and then asked to talk to me; she wanted to know how he's doing. He can't really carry on a conversation any more, though he is always glad to hear from her. I think he had another stroke about a month ago; he has to be coaxed to eat, and often falls asleep during breakfast or dinner. He can't tell us when he has to go to the bathroom any more and is often incontinent without being aware of it. In addition to that my aunt, the one with metastatic lung cancer - remember? She's on hospice now - is becoming weaker and weaker. She is eating less and her weight loss is accelerating. A few weeks ago I made the decision to move in with them, and I've been staying there more or less full time.
This means I won't be seeing patients for now. Not that I was seeing many, just one four hour shift per week, but it was something. It made me feel like a doctor again and not just an overloaded daughter, gave me a chance to dust off my skills rather than letting them atrophy. Even virtual visits are not an option, as it has become impossible to spend four uninterrupted hours online due to the needs of my parents and aunt.
My aunt is my main responsibility right now. She is becoming increasingly confused as well as having major memory loss (probably due to the chemo and radiation). She isn't able to keep herself occupied with much - she does read but I don't know how much of the book she retains day to day. In an effort to give her variety, I tried to show her how to use my Kindle but she simply could not fathom it, even after I set up a book for her with a large font. She could not remember how to tap it to turn the pages. Physically, she is wheelchair bound and requires oxygen at all times. Even taking her to the bathroom has become a significant journey.
Her friends have been very supportive and have made the drive from the Palm Springs area many times in the past two months to visit. Two came yesterday and two more are coming today; yesterday, two men (partners) and today two women (also partners). The women have a lovely long-haired dachshund that loves my aunt, and my aunt loves her right back. I will miss seeing her today as I had to go into town for an orthodontist's appointment (my treatments are over and I am graduating to a retainer, hooray!)
My aunt has outlived her prognosis, I think due to force of will alone. Major props to her for this. Taking care of her has taught me a lot, as I have never seen major illness from the family point of view before - only as a physician. Eventually I will go back to work part time, and I hope I will take what I have learned with me.
I don't know whether all of this commentary adds up to anything or not. At least it is a relief to put it down.