No matter how long I spend on the caregiver road, I am often surprised at how I can still be surprised.
Following a hospital stay for sepsis (and a short stay in rehab), I got my mother back to the best possible care at her group home residence. Augmented by in-home physical therapy to her get stronger, she was responding well. She was gaining strength and the ability to stand with help and walk with a walker. The aides at the home expressed their pleasure with her progress. That was Friday.
Saturday morning I got the call; she was back in the hospital. Mom was bleeding from her intestines.
On arrival at the ER, my brother was already there. The ER doctor told me Mom had lost a lot of blood and might need a transfusion. I told her Mom is DNR; there would be no transfusion. She cautioned me that Mom could have a heart attack or stroke. I let her know I understood. I turned to my brother.
“You understand where I’m going with this, right?”
He indicated he did, and agreed. She wouldn’t want to extend her life. If she was a pet, I’d have taken her to the vet and ended it by now. And it would be the right thing. Unfortunately, it’s not the LEGAL thing.
Mom was admitted. Her nurse told me Mom’s blood work was abnormal. Her hemoglobin was high, but that had to be a mistake. How could anyone lose so much blood and have a high red count?
Two young interns came in to examine Mom. I gave them her history and they looked her over. They were sweet and attentive. They gave me their phone numbers.
Over the course of her stay, I learned something that really rocked me: Mom’s blood work was correct. Her red blood cell count WAS high. Apparently, she’s had a rare condition, probably for years: polycythemia vera. Her bone marrow makes too many red blood cells, which can cause clots (like the one she felt in 2006 when she had a heart attack). It’s also associated with a lot of other symptoms, like dizziness, gout, bleeding ulcers (all of which she’s had) and aphasia (speech problems), confusion, memory and perception issues. This could, indeed, be the true cause of her dementia, and may explain why her symptoms are so atypical of Alzheimer’s.
This condition apparently caused the intestinal bleeding, too. It’s her body’s way of casting off all the extra hemoglobin clogging her circulatory system. Her red blood cell count went to more normal levels as a result of her bleeding out.
For a patient with the ability to cooperate and recuperate, the doctors would have performed an endoscopy. We all agreed that submitting Mom to that misery was pointless.
I spoke my geriatric care manager and she told me that, based on her vast experience with the elderly, Mom was breaking down. This was probably a good time to consider hospice. Mom’s doctor agreed.
I also wanted to get Mom out of the hospital. She was being left unattended for long stretches. She wasn’t bathed. They kept her in the same gown, with pressure cuffs and foam booties on her legs and IVs in her arms (all of which she tried to remove). She was unable to press a button or call out for help. I had to go in everyday to check and make sure she was getting fed and hygienically tended. Every time I saw her, she was cognitively worse, hallucinating and speaking in tongues.
She was released the following Thursday, and I coordinated her hospice assessment with her arrival back at the residence. That evening, when I got there, Mom was in a new room. This double room could accommodate a hospital bed and put her closer to the hub of activities, so she could be attended to more readily. She was in bed and quite giddy. She laughed at jokes I told her. She clearly connected with her caregiver. (I had not met the night gal before). This woman expressed obvious affection for my mother and it was definitely mutual.
The hospice nurse arrived to evaluate Mom and go through the paperwork with me. She was very kind and patient. When she asked me if I understood hospice, I told her what I knew; that the goal is to provide comfort and freedom from pain. No life-extending measures would be taken.
She was impressed and probably a little relieved. Most people in this situation haven’t come around to certain realities. I was already there.
She also told me something very interesting; her father had died at the age of 47 from the condition Mom has! He was born the same year as Mom. He died on the way to the hospital 38 years ago. It’s amazing how such a rare disease can suddenly seem like an epidemic.
Now that I have accepted this course, there are things I can and can’t do for Mom. She can’t receive physical therapy any longer; that’s considered life preserving. She can go to the hospital if she breaks a bone or something of that nature. She can come off hospice and go back on any time, as needed. I can always change my mind.
Will I? Who knows? How long will this go on? Can she possibly continue this way for months or years on end? Could life be that cruel?
It’s beyond good days and bad days; it’s good moments and bad moments. She’s tired all the time. She knows me, then she doesn’t. She chatters unintelligible gibberish, and then speaks a name or thought rather clearly. Up and down. High and low. Dead and alive. The rollercoaster ride continues, and I long to get off.
I’m tired. I’m sad. I’d like to talk to someone, but I can’t think of who right now.
So I write. I type out the toxins, the sadness, the pain, the knowledge, all of it. I pray for the end to her suffering. I pray for the end of the ride, so I can get on with my life. I don’t expect miracles. But part of me continues to ask.