As some of my recent writings have reflected, my 90 year old father is actively dying, his replaced aortic valve no longer working. One month ago today, we formally enrolled him in hospice care. It has been quite the month. As Dad’s eldest child, I was given responsibility of being his general power of attorney or personal representative. I and my next two older siblings are all medical powers of attorney. I am grateful every day that I did take this responsibility seriously and did what I could to ensure that Dad did everything needed to get his financial and personal “ducks in a row”.
That all that paperwork was done in advance has allowed me to manage his affairs reasonably well, paying bills, signing and filing his taxes, all that good stuff. He and my stepmother have kept their finances separate aside from shared living expenses and joint home ownership. It’s worked for them for 31 years.
This process has been very difficult for my stepmother, J, as it exacerbates (what I observe to be) her chronic anxiety and fear of being “done wrong”. One way this has manifested during this time has been her desire to move dad to the care portion of their retirement community. On one level, I understand this. Given that since April 30, I and my siblings have been taking 24 hour shifts to care for Dad in their apartment, I really appreciate the difficulty of caregiving. It’s exhausting for me, doing one day out of 4, and I’m 18 years younger than J. All day, every day, I couldn’t do it either.
However, I have a (big, huge) problem with moving Dad to the care unit (aka nursing home). Number one, Covid-19. Now, their facility has done beautifully, with thus far no residents in assisted living or the nursing home side of things becoming ill with Covid-19. Of course, part of this is due to the units being on strict lockdown. No visitors, except when death is imminent, and then only in full protective gear. And that, while very unfortunate for patients and families, is as it needs to be during this pandemic.
Back to Dad. In the process of diagnosing his failing heart valve, he was admitted to hospital, ruling out Covid-19. I’m a physician, I do understand why this was necessary. However, saying goodbye to him as he was wheeled from the ER to the isolation of the hospital was one of the hardest things I’ve ever done. Going into this, Dad had some dementia. Lack of circulation due to his failing heart made this much worse. Even worse than saying goodbye to Dad was being on the phone with him while he was in hospital. He couldn’t understand or remember why he was there. He did know he was alone except for hospital staff.
Hearing him beg to be “gotten out of here”, or wondering why he had been abandoned was truly heartbreaking. I vowed then that I would do everything I could to prevent that from happening again. So when his wife made plans to transfer him to the care unit, I said no. Again and again. For anyone with dementia, any change is difficult. Moving to a totally unfamiliar setting, without anyone he knows for contact, would be terrible quality of life for Dad. I also know, from a lifetime with my father, that he does not like medical intervention and he basically hates for anyone to tell him what to do. This trait has not diminished over time. He had filled out end of life forms clearly delineating this. He didn’t want to be in the hospital except to treat a clearly treatable and reversible problem, and wanted all care to be in his own home.
I had my instructions.
My stepmother was understandably upset by all of this. Her life is hugely disrupted, her husband is dying, and now his *!&?* kids want to come into her apartment and take care of him? “What about me? They are trying to kill me by bringing the Covid virus in, too.” Not pretty, to say the least. After a lot of negotiation and literally hours of phone calls, a temporary agreement was reached. One of dad’s 4 children would come in for 3 hours every other morning, giving Dad time with his family and my stepmom some respite and a chance to be out and about. Phew!
We didn’t get all the way through the first rota before J had had enough and chose to move to the guest suite in their complex so that she could get better rest and be spared the intrusion of caregivers in their apartment (its a large 2 bedroom and they’ve each had separate living spaces since they moved in in early 2019). On very short notice, we went to 24/7 caregiving. Things have worked okay since then. We didn’t realize when this started up the level of terror and rumormongering that goes on in a facility of this sort. This became clear when residents expressed terror that they, too would get Covid-19 from Dad’s kids. All of us are well as are all of our household members and have had minimal exposure, especially as I resigned from my volunteer work with the recovery shelter when Dad was in the hospital.
So after yet another massive phone conference Monday, with the facility bigwigs, social workers, hospice, kids and stepmom, we got things further worked out. I think what turned the tide was the hospice nurse (who is well loved and respected and works extensively in their facility) saying that moving Dad anywhere, whether to their care unit or to one of his children’s homes would be detrimental to his health and quality of life.
I last saw Dad yesterday morning. He’s failing fairly quickly now, rapidly losing strength, his breathing patterns are changing, and he’s struggling with the agitation and disorientation that often accompanies this phase of dying. Hospice has been wonderful, and we were able to get some medications that are helping his agitation. He has moments of clarity, and clearly wants his people around him, even as he doesn’t always recognize us in the moment. Reading my name tag (we go through the Accuscreen process each day when we arrive at their complex), he repeated my name and said, oh, she’s my sister.
Not in this lifetime, Dad, but close enough.
I am sorry that my stepmother and their living facility has found me and this process so disagreeable, and I am not at all sorry that I am doing exactly what both my parents taught me to do, advocating for what I feel is right. I am truly honored and grateful to have my 3 siblings standing with me at this time. Mom and Dad, thanks for your example.
Addendum: About 10 hours after I first posted this, Dad passed peacefully in his sleep.