Next week is Christmas. As the mother of two youngsters, it is supposed to be a joyous, happy time of year. More realistically, it is supposed to be merely a busy, stressed out time of year. But, for me, I keep thinking about the last Christmas shared with my father. Cue the tears.
Technically speaking, I opted out of my Dad’s last Christmas. It was too painful and I couldn’t bring myself to see him. I didn’t think I could be there for my boys in the way they deserved if I spent time with my Dad that day.
Ouch. It hurts to even type those words.
We would learn a few months after the holidays that the lung cancer that just a few weeks before, he was told, had been successfully treated, well, wasn’t. Instead his changed mental status, violent, angry outbursts, surly mood, his disheveled appearance, his bitter, angry rants at his children, his insomnia, his paranoia, and his aggressiveness with doctors and nurses were symptoms of his cancer having an epic neurological impact.
It wasn’t dementia or psychosis that we were seeing, though that is what the doctors were treating. It was a rare side effect of his cancer known as paraneoplastic neurologic syndrome. Long story short, because of the cancer in his lungs, my father’s immune system went into overdrive, attacking what it considered to be an invader. It started manufacturing antibodies that leaked into his nervous system, greatly and disturbingly wrecking the last few months of my father’s life. Sadly, none of this was understood in real time.
Instead, my father was bounced between hospital floors for almost two months. He started on a medical unit, but when he tried to choke a doctor making rounds, he was bounced to the psychiatric unit. When that setting didn’t work out so well either, he was bounced back to a general med floor where, a CNA told me on the sly, the attending doctor tried to convince my Dad he would have more freedom and independence if he moved to a nursing home for rehab. No one wanted to claim him.
As someone who has spent over a decade working in healthcare with older adults, I was shocked and at an utter loss. Our medical systems, even at a place in a major urban setting with a great reputation, had no capacity to treat what ailed my Dad. And, as it turns out, I had less capacity than I thought so, too.
Worse, save for one neurologist who cleared him for hospice, every single medical professional assigned to him at three separate hospitals had zero curiosity about what was happening with my Dad. Responses ranged from, “Well, you know he is old. Dementia is common at this stage of life,” to the repeated suggestion that he was suffering from alcohol abuse that he hid from his children. My father was a teetotaler that didn’t even like his children to enjoy a glass of wine at a special dinner. It wasn’t dementia or substance abuse or psychosis, but the docs didn’t know that because they didn’t bother to take a thorough history or connect the dots.
In between telling me I was a rotten child who betrayed him terribly, my Dad begged and pleaded with me that last Christmas Eve to exercise my power as his health care proxy to have him discharged to family’s care so he could spend Christmas Day with us instead of with the strangers in the in-patient psychiatric unit.
It wasn’t possible, of course. My Dad overestimated my powers as his POA. Sadly, he may have also overestimated my powers as his daughter, too. The truth is, I couldn’t do it. After a couple weeks of daily hospital visits, I established a hard line around Christmas. I opted not to taint that day with the curses and accusations and anger and bitterness of this man I loved dearly who was suddenly and excruciatingly not himself.
The holidays can be hard in the best of times. Holidays with aging parents can be tricky and unpredictable. Holidays with hospitalized parents can be downright unbearable. I think, for the rest of my days, I will be haunted by my Dad’s last Christmas. The guilt and helplessness I felt is a burden I still carry. The season evokes those cruel days like a flexing memory muscle.
May this holiday season find you and the older parents you love in a place of peace and comfort. May you not be haunted by any Christmases past, present, or future. And, if, like myself, you are, may you find the strength to cope with your ghosts of Christmas past to enjoy the beauty and love of the day.
Mary Tyler Mom 