March 6th came and went this year without me remembering that it is the anniversary of my mastectomy and transverse rectus abdominus flap reconstruction surgery due to breast cancer. March 6th is also my dad’s birthday. This year was his 90th, so we were planning a fun get-together on Saturday the 7th.
Ask your doctor how Eliquis can fuck you up.
The get-together was canceled, however, as Dad fainted on Friday, February 7th from an unexpected bout with atrial fibrillation. The ER doctor could not convert the A-Fib with medication alone and after several hours in the ER, had to resort to shocking his heart back to a normal rhythm. He was sent home with a brand new prescription of Eliquis, the miracle drug that you’ve been hearing about incessantly (if you watch any televised news show commercials), that is such a big improvement from that creaky old drug, warfarin (Coumadin) which is way too generic to ever hear about in commercials. The thing they tell you about Eliquis is that you do not have to have weekly blood draws to make sure that you are not taking too much. The thing they do not tell you is that if you need to suddenly NOT have Eliquis in your blood, there is only one expensive way to do it, and that way doesn’t really work, whereas warfarin can be counteracted with vitamin K. Another thing that they DO tell you is that any blood thinner is bad to have in your blood if you are prone to falls (like my Dad) because it will cause you to bleed much worse, but you must weigh the danger of a fall (bad) with another episode of atrial fibrillation or its likely result, a stroke (very bad).
The next day, Saturday, February 8th, we were to learn what happens when a 6-foot-tall man with Parkinson’s Disease gets dizzy, falls backward and hits a wall and then the floor with his head while on a new fancy blood thinner.
My Mom and Dad at the airport not that long ago.
He was conscious and patient with the constant standard head-injury questions while in the ER. He knew the date, knew who the president was, knew where he was. But as time went by and the bleeding in his head got worse, his consciousness faded, and his questions got fuzzier and answered with less patience. He was admitted to Trauma ICU and watched closely for several days. He got less conscious and less patient. He slept more and when he wasn’t sleeping, he often tried to get up and go home, which left him with more and more restraints and less and less patience. He was angrier awake and less patient with those trying to help.
Once the CT scans showed that the bleeding in his brain was no longer growing, he was transferred to the medical wing where he continued to sleep and complain. It was quieter here and maybe he could start his recovery.
Now that the bleeding had stopped, all we could do was wait to see if his brain, which was already dealing with Parkinson’s Disease and nearly 90 years on the planet, could heal itself after being damaged by this bloody injury. After seeing the extent of the bleeding on the series of CT scans, my hopes for a complete recovery were near zero, but there was a small chance that with enough time and therapy, he could come through it, maybe in a wheelchair, maybe even in a walker, with some home nursing help. But I knew that chance was slim; that blood had seeped deep into his brain.
Dad at one of my art shows a couple years ago
Anybody stuck in the hospital for days on end with the beeping and the poking and the BP squeezing would get grumpy, but in any other non-brain-injury circumstance, my dad would have handled such an indignity with, well, dignity. Dad is known for his quiet intelligence and humor. He would not dream of acting in a rude or childish manner and if his former self could see him as he became in the hospital, he would be mortified. The worst part is, I think, in his more conscious moments, he is mortified.
The day after Valentine’s Day, he was transferred to a rehabilitation center to get intensive physical, occupational and speech therapy as he convalesced. Unfortunately, For the last three weeks, he has done little but sleep, and the therapy that he has agreed to do has been grudging at best. He has refused most of his meals and has lost a significant amount of weight. He no longer even assisted the nurses in transferring him from bed to wheelchair. In his less lucid moments, he still tries to get up and leave, but only manages to fall in a heap. In his more lucid moments, he must not see a way out of this situation. He seems to have lost interest in trying.
After three weeks, they were unable to recommend that further therapy would improve his condition, and his insurance would no longer pay for his rehab. Mom called me, fearing that the rehab center would no longer allow Dad to stay. I made some calls and found out that he could stay as long as he liked as long as Mom was willing to pay full price. I don’t remember who I asked about hospice first – Mom or the social worker at the rehab center - but after I broached the subject, the social worker felt that hospice was an appropriate next step given Dad’s current prognosis and recent decline.
I didn’t know much about hospice before a week ago. Now I know that it is a philosophy toward end-of-life care, a foundation, a medical status, and a Medicare program. It turns out, Medicare pays for hospice care directly, even if you have private Medicare Advantage coverage. Medicare Hospice covers all nursing care and medicines related to making a patient comfortable and as pain-free as possible, but does not cover nursing home bed costs (probably because hospice care can be given from home). So we arranged for Dad to be entered into hospice care at the rehab center and wrote them a big check so he would not have to be moved. He has a hospice nurse and better pain medication. He is being given some antipsychotic medications to deal with the visual hallucinations that have been plaguing him (an occasional symptom of Parkinson’s but quite exaggerated by the injury to the occipital lobe of his brain).
Dad on one of my luckiest days
He was entered into hospice care on Friday, his 90th birthday. And the 1st anniversary of my mastectomy. I totally forgot. Today I thought about it for the first time.
I have a vicious headache that I can’t shake. I would take something I have left over from that mastectomy, but I will soon need to drive over to the rehab center, so I am powering through. Whatever my pain is, it pales in comparison to what my dad is experiencing today. He is in a nursing home, in a bed 18 inches from the floor with a mattress next to the bed to lessen the fall if he tries to get up again, with bruises on his hips, back pain, shoulder pain and a constant headache, with contracted muscles from the persistent sleep. Most of the time he is angry. Sometimes he is wistful and apologetic about the trouble he is causing. Never hungry. Always sleepy. Mom and I have spent a lot of time watching him sleep. It might matter to him that we are there. It might not. But we can’t do anything else.
Occasionally we try to plan for the inevitable but even though we have acknowledged it simply by placing him under hospice care, it still feels a little like a betrayal, a little like we have given up too soon. We were all supposed to move to Sisters, Oregon in April. The house is being renovated right now with a walk-in shower with grab bars and easy-turn doorknobs. We were going to help Dad through this next phase of his progressive disease in a house with views of mountains and trees. But now we can not move Dad, so Mom and I will stay here in Vancouver until he passes. Even saying that seems like we are planning for our lives after we have turned our backs on his. But our Vancouver house has been rented, and our lives must move on. We just don’t know when. He is still in there, and we are pleased to see it every time his brain wakes and clears for a moment.
I don’t know if he is prepared to go. I don’t know how I can help him prepare. I think he believes in God in a rather abstract way. I’m not sure if he believes in Heaven and Hell. Certainly not a white-bearded fellow on a throne. But I hope he believes that he has lived a righteous life and that he has done more good than evil, and that if there is any sort of afterlife that it will be a blessing and not a curse. Because he has been good and done good and he deserves more than this painful last chapter. I hope he gets it.