This was my father on July 20, 2016. It was taken his first morning at New Dawn Memory Care. He had had a good night and looked better than I'd seen him in some time. And he was lucid. We had a conversation.
Daddy has dementia. I don't know if it's vascular dementia or Alzheimer's. It doesn't matter. Both lead to death by a circuitous and often torturous road.
He had been living in a residential care home, but he had started exhibiting aggressive behaviors -- pushing, lashing out physically -- and they asked us to move him because they were not set up to take care of patients like him.
My father had never been aggressive in his life, as far as I knew. He didn't drink. I'd never heard him use profanity. The most violent thing I'd ever seen him do was many years ago when I was in high school.
My mother, brother, and I were at the breakfast table with Daddy. And Daddy lost his temper with Momma. Now, you've got to understand that my mother who was an interesting, brilliant, and passionate woman could be the most frustrating person on the planet. But Daddy just never seemed to get mad at her. That morning we were having pancakes and there was a stick of butter still in its wrapper sitting on the table. He got so angry he snatched up that stick of butter and hurled it to the floor right next to his chair.
I don't remember what Momma was going on about, but I can guarantee you that we all hushed up.
Daddy still doesn't use profanity, but, and I've never witnessed it myself, his care givers have said he's pushed them, struck out at them, and held them by their wrists and wouldn't let go. These are caring women, but they are small. Daddy, though not large compared to most of my family, is about 5'9" 152 pounds and physically quite strong.
He has minor to moderate hearing loss compounded by the dementia. Because he is slow to comprehend speech and then formulate the appropriate response, people think he doesn't hear them. They talk louder, literally raising their voice. When we lose our hearing, it often presents in the loss of the higher tones. So he hears less that is recognizable and feels that he is being shouted at which leads to agitation.
The caregivers were not native English speakers and had strong accents. One of the symptoms of his dementia involved frightening hallucinations so you add to that being spoken to in an English he didn't understand and I think he felt threatened and was trying to protect himself.
He was wheelchair-bound so it was pretty easy for them to keep him corralled, but finding a regular nursing home that would accept him was impossible because of the aggressive behavior. I thought if we could just get his medications adjusted, his agitation and aggression could be controlled. The homes I talked to were not prepared to take on that responsibility. And I understand that.
I want Daddy to be safe and comfortable. I also want the people who care for him to be safe.
One of the nursing homes I talked to called me back and suggested that Daddy go to a memory care facility long enough to get his meds adjusted and then he could move into a nursing home.
Memory care facilities are very expensive and the ones I had talked to do not take Medicare/Medicaid. Daddy's current financial situation will pay for his care for a while, but it can take a long time for a person with dementia to die. It certainly is not beyond imagining that he will outlive his money. So I've got to make his money go as far as it will and then we will have to tap into whatever benefits we can. Including Medicare/Medicaid.
With dementia there are good days and bad days. Often there are good moments and bad moments. That first night at New Dawn was a good one. That next day when this picture was taken was a good one.
His second day there I resumed my preferred manner of life -- a walk, then my Silver Sneakers exercise class. I had been spending time each morning with Daddy because he was calm while I was there. We had a private care giver come in every afternoon except holidays when the cost doubled. I covered those afternoons.
It hadn't been bad. Much of the time we talked about old times, went for walks when it wasn't too hot, played catch with a big ball, or just sat quietly waiting for lunch.
That second day while I was walking and exercising, Daddy fell twice. The first time was at breakfast. He dropped his spoon on the floor and was leaning over to pick it up. They called while I was walking, but assured me he was fine.
Before I arrived for my afternoon visit, he had fallen out of his chair again. They didn't know exactly how it happened, but I knew from experience that Daddy often thinks he sees things on the floor and will try to pick them up. The second fall had caused injuries to his right shoulder and ribs.
When I got there he was in a big easy chair listing far to his right, propped on a pillow, and extremely confused. Any movement caused him a great deal of pain. I had to decide. To transport to a hospital or not to transport.
They could and would do x-rays there at New Dawn. So we could determine if anything was broken without transporting. They could and would get pain meds prescribed by their physician. Okay.
But to determine whether or not he'd had a stroke would require a CT scan at a hospital.
I tried to get Daddy to smile. One of the symptoms of stroke is drooping on one side of the face, easily noticeable when a patient smiles. There was maybe a little drooping. One eye seemed slightly more dilated than the other, but when the nurse used a pen light, both eyes reacted appropriately.
Then the question was, if he had had a stroke how would he be treated differently at a hospital than where he was. At New Dawn they have a registered nurse 24 hours a day. They have a doctor on call 24 hours a day. And we had long ago, along with a capable Daddy, decided we would take no heroic, life-saving actions.
So we decided not to transport, and I fed him his supper in the chair where he sat listing to his right.
The nurse asked me to consider applying for hospice care. For some families that's a frightening suggestion, but not for me. We had had hospice with my mother during her last days. And one of the ladies at the residential care facility had just graduated from hospice. That means she had stabilized and was not likely to die in the near future. So I did not take the nurse's suggestion as an indicator that she was announcing a death sentence for Daddy.
My only experience with hospice had been a good one. My sister-in-law is a hospice nurse. I have never heard of a bad hospice. The next morning I met with a Compassus intake worker. She examined Daddy and his records and signed us up. They will provide the supplies and equipment he will need. They will help us find a nursing home when he's ready for the move. And they will follow him. They will be a second set of eyes and minds working with whatever facility he's in. They will give me the information I will need to make whatever decisions I will need to make. I can't tell you what a weight that has taken off my shoulders.
So come the next morning I walked with my walking group at Main Reservoir. I was not worried about Daddy and it was a beautiful day. There was a white pelican on the water. And cormorants, and duck families. People were fishing or just sharing the shade. We met or were passed by other walkers, each as friendly as the ones before and after.
A small backwater on the north side of the lake.
See the line of algae across the middle of the picture?
It looks as though it's floating in the air.
Some of us walked to the Starbucks by the lake for coffee and whatever. I know. I know. Walking like this will do nothing good for your waistline, but the companionship will sooth the soul.
After lunch, the hospice nurse called to tell me that Daddy was doing less well. She had increased his pain medication and changed his diet to pureed food and thickened liquids. Choking is a real risk for patients who can't sit upright to eat and drink. Not so much because they'll choke to the point of not being able to breathe, but aspiration of anything into the lungs can cause pneumonia which would be one more danger and discomfort for Daddy.
I shouldn't have been surprised to see what condition Daddy was in, but I was. He's now pretty much bedridden. He didn't know me.
I live in metropolitan Denver. We are in the High Plains Desert which means we usually measure rainfall in tenths or even hundredths of inches and we are glad to get whatever we can. The sun here is fierce so clouds are a joy both for the immediate relief of summer heat and the promise of precipitation to come.
This is what I saw on my way home.
In the distance are the Foothills of the
Front Range Mountains. The light here
is ever a wonder. If you look closely
you can see shafts of sunlight alternating with
the dark of what could be either rain or virga.
And closer to home
That bald rounded hill in the distance is my Green Mountain. Because it doesn't have trees to speak of and rises almost alone from the prairie I can recognize it from anywhere in the Denver area and I know home is that way. A good anchor in the world when you don't know if tomorrow will be a good day or a bad one.
