Most primary caregivers have a yearning or prayer to be together with their Loved One (LO) for one more moment just like their old times. Geeta Iyer also yearns for one such moment in time, “No matter what kind of day I am having with my dad, I can’t help wishing for that moment…”
It’s getting close to a year in India for us. Moving here has certainly proved to be a good decision, but I didn’t know that in the initial months that were often excruciating. I didn’t have the round-the-clock help I do now and found myself doing a lot more than I did in the US. The dementia also seemed to have gotten worse. I had moved here to feel better and it was just the opposite. I remember being very depressed as ’this damn thing had sucked the life out of me!’
Our new home was a completely unfamiliar environment for dad. He often thought he was in the US, and it generally doesn’t help arguing with dementia patients. Their brains are wired differently, and we often have to go along with their reality, however far-fetched it might be. I’ll admit that we have all battled to make him see things as we do, telling him this is home, that he is not broke, that we are not sitting in a train and there is no one in that corner. This behavior had started in the US, but it was usually after 4 pm that he turned into this person, who saw nonexistent things and people. Now it was much more enhanced and frequent. The shadows he saw on our new shiny floor didn’t help.
Conversations in loops
Some of dad’s old friends dropped in soon after we arrived, and he was excited to see them. He got emotional and cried reminiscing with some of them. There was no meaningful conversation though, and he repeated himself endlessly. Slowly, they stopped coming and my mom, I, and the two hired helpers have now become his daily constants. These days, he is less inclined to meet people. I think it is because he is unable to recognize anyone, despite the pointless “Do you know who I am?” that every visit begins with. He usually can’t even get my gender right. And depending on the day, he is anywhere between 24 and 2,000 years of age! We do end up having some hilarious conversations every now and then.
A few weeks ago:
Me: How old are you, Appa?
Dad: Must be 25 or 26!
Me: I am your daughter and am 54. How can I be older than you?
Dad: I never looked at it from that angle.
Me: Is that possible?
Dad: But, it has happened!
Tragic role reversal
Dad could no longer find his way to the bathroom, which was right next to his bed. Mom slept right next to him, but he didn’t know enough to wake anyone up. He almost had a pattern, which was every three hours, but I missed it sometimes. It was heartbreaking to see that he had crawled all the way to the dining room one night looking for the bathroom. When I finally found him, he looked up at me helplessly.
“Do you need to go the bathroom?” I asked, helping him up.
“I already went,” he said.
When asked where, he said he couldn’t remember.
A tragic role reversal in my mind, as one of the earliest memories I had from my childhood bed wetting days was my dad picking me up preemptively while I slept and carrying me to the bathroom!
It was pointless to put him on diapers as he had a tendency to ‘look for the bathroom’. The problem was his judgment about where the bathroom was! We didn’t have Maushi, our night-time helper then, so I was up a few nights cleaning the floor and changing him. He fell down a couple of times on the floor he had just wet, but luckily wasn’t injured.
An unexpected heart attack
Then, in July 2018, three months after moving to India, mom had a heart attack!
Mom recently turned 90. Our lives had been about taking care of dad, but my mom was taking in a lot of stress quietly. It struck me that my dad didn’t even notice that my mom was gone from our home when she was at the hospital. Theoretically, my dad could be with anyone and anywhere now, as long as he was cared for with love and understanding! I made the decision to move dad to our guest bedroom when mom returned from the hospital. I also hired Maushi to watch over dad at night time.
A song of hope?
One of the readers of my blog had commented that I sounded a bit sad, especially considering that my dad had lived 90-odd healthy years. The thing is, it is impossible to sing a happy tune about dementia. We are living every moment with someone, who feels lost at home and is looking for a way out. And there is only one end to his hopeless search.
I was listening to Whitney Houston’s song yesterday and my eyes welled up. I kept thinking:
Give me one moment in time
When he sees this train as his home
And I don’t need to remind him
That we are his own.