Group homes for people with disabilities have been around a long time. I used to work at a place called PSCH. We helped people with developmental disabilities get homes in the community.
When I felt I needed to get my dad out of Pacifica House ALF during COVID because he was locked in his room all the time with no interaction from others, I looked for other options.
Since he was a fall risk, there weren’t many and I finally found a group home for people with Alzheimer’s and dementia.
As soon as I received my vaccination, I flew down to Florida to see my dad. I have now seen him twice since the start of the pandemic. Before the pandemic, I went down there every couple of months.
In the group home, located on the border of Boca Raton and Delray Beach, there were six residents and three full-time aides. I thought this may be the perfect solution for him to give him individualized care and also have that interaction with other people.
At the ALF
When I walked in on the Monday after his birthday, I had my hands filled with cupcakes and a balloon. One of the aides opened the door and gave me a friendly hello. My dad was sitting in the kitchen.
“Hi Dad, it’s me, Hilary,” I said. “Happy birthday!”
“It’s not my birthday any longer,” he said. I explained that when you have a birthday you have the week before and the week after to celebrate. He didn’t really comprehend what I was saying. I was surprised he knew it wasn’t his birthday!
I thought he recognized me. I wanted desperately to think that he felt familiar with me.
I brought him an empty drawing pad and pulled out some markers. “Let’s draw,” I said.
Margaret*, another resident, was sitting alongside us. She asked if she could draw too. I said, “of course.”
I pulled out a sheet and gave her some markers. “I can’t draw,” she screamed.
“Okay, so don’t draw,” I said.
Shortly after that, it was time for breakfast.
I put away the pad and markers while Shanika, the other aide in the home at the time, served all of the residents. Breakfast consisted of eggs, oatmeal, pancakes, and hot dogs. It seemed like a lot of food to me but he seemed to eat every bite. One of the aides fed my dad while the other residents ate themselves.
Patricia*, one of the other residents, kept walking in and out of the kitchen. Jeanie* and Hilda*, two of the other residents sat alongside my dad.
As they ate, I started to show them photos of my daughter’s wedding. Everyone was very excited about it except my dad. I don’t think he knew what he was looking at. I started to call the grandchildren to see if anyone would pick up. Unfortunately, my dad didn’t know who they were.
I still thought he knew who I was. He held my hand tight.
As I was getting up to leave…
I told him I was going home. I had been there for three hours and after singing and trying to dance (or rather swaying to the music) with the residents, I had enough. God bless those aides!
My dad had a moment of lucidity and said, “Hey, you want to go with me into the bedroom and have some sex? Does that sound good to you?”
I was horrified. At that moment, I knew, he had no idea who I was but saw a “pretty girl” paying attention to him. I went back to the hotel feeling disturbed.
The next day
I went back on Tuesday. My dad was shaking uncontrollably and couldn’t communicate at all. He didn’t even notice that I was there. He kept nodding out and his skin was a purple color.
I was concerned. When I asked what medication he was taking, I found out that they were giving him Zanex in the morning. “He’s up all night crying,” one of the aides told me. “He doesn’t sleep at all.”
After telling the owner and then calling Hospice and explaining that he should be taking Zanex in the evening, not in the morning, they agreed. “We will write a script so that he gets it at night and if he needs it during the day, he will get it,” the nurse told me.
Meanwhile, I also asked them for a full blood workup.
On the third day…
My flight was leaving at 12:30 pm, so I got to the house early. Hospice was there cleaning my dad and getting him dressed. They put him in a wheelchair and brought him to the kitchen. I sat with him. He was incoherent but I tried to talk with him in an upbeat manner.
Slowly, the other residents joined him at the table and Shanika was serving breakfast. Thomas, the third aid, sat beside my dad and another resident. He fed my dad and helped feed the other resident as well.
Suddenly, Margaret who is very vocal and screams out inappropriate things gave Hilda a look. Hilda said, “don’t you look at me that way, Margaret. STOP looking at me.”
“I hate you,” Hilda said to Margaret. Margaret didn’t care. She kept trying to do anything to bother Helen, including tapping her fork on the plate.
“STOP IT RIGHT NOW,” Helen screamed at her.
Shanika came over and said, “now you guys behave yourselves. Be respectful.”
Next, Patricia walked in and Shanika went outside with her to give her her breakfast. She didn’t want to sit with the rest of the residents. Patricia is much younger than most of the people in the house. She’s probably about 20 years younger, which I found very sad.
After eating her breakfast, Patricia walked back into the house and said, “I want a cigarette.”
“I’m sorry Patricia but your sister told you only 5 cigarettes a day,” Shanika said. “If I give you another one, I’ll get in trouble.”
Patricia walked back outside. She was mad.
I looked at Shanika and said, “I don’t understand. The woman has dementia, let her live out her days doing something that makes her happy. Who cares about lung cancer at this point?”
Shanika, not wanting to get in trouble said, “her sister wants her to have only 5 cigarettes a day. I have to respect that.” I understood. If it were me, I would let my sister do whatever she wanted at that stage of the game.
I wished my dad could communicate.
It was so disturbing and distressing to see my dad in that condition – wheelchair-bound, not being able to feed himself, not being able to hold an item in his hand, not being able to communicate, and not being able to go to the bathroom on his own.
I kissed my dad and told him I loved him but he didn’t respond.
How sad is it to have all of your memories erased forever and to live moment by moment with others giving you total care?
I started to think about what Margaret’s daughter said to me on the second day that I was there. “If I get like this, I want to live in a group home just like this,” she said to me.
I replied by saying, “if I get like this, I pray that my family either take me out back and shoot me or give me an overdose of something to let me rest in peace.”
*Names have been changed to protect the identity of the other people living in the group home.