Last night I dreamt my Dad was strapped to my back like one of those babies I see in pictures of African countries, snug against their Mothers, tied with with a colorful sheet of fabric. Sometimes I see these ladies with their babies here in Phoenix. They are usually waiting for the lightrail or the bus, their children peer out at the world from over their shoulders. In the same manner I brought my Dad everywhere; grocery shopping, the park and to various appointments. He wasn’t a burden. He’s my Dad.
A few years back Dad was diagnosed with Parkinson’s Disease. His once agile hands now shake with tremors. The unfortunate part is how this affects his cognitive abilities. I had noticed on the phone that sometimes he would be speaking and forget a word. “Now what the devil was I going to say?” he’d announce. I would instantly start with an unintentional game of charades: sounds like? How many syllables? But things would progress.
About a month ago Sister 2 called. She lives the closest to Dad in our home state of Massachusetts. I was at an RV show with my other half, Jayel when she called. She explained that Dad’s condition had gotten worse and he could no longer drive a car. A week earlier she had placed all his medications into one of those pill divider cases that outlines each medication to be taken that day. She even went so far to set an alarm on his cellphone to remind him when to take each. A week later she went over to check on him and discovered a full pill divider case. He had not taken any of his medicine in a week. He simply forgot.
Sister 1 & 2 and myself got together and decided we would call Dad every day at different times to remind him to take his medication. Where I am the furthest west, I take the 5pm and 7:30pm east coast shift. Sister 1 resides in Ohio so she and sister 2 take the earlier hours. So far this process has been working. Sometimes Dad will call a few minutes before the scheduled time and he doesn’t always bring up that he’s calling about his medication. It’s like a shadow in his mind. He knows we will be in touch but the connection to why isn’t always there.
Things seem to have gone downhill rather quickly for Dad. He told me a few weeks back he was seeing the dog in the house. I assumed it was one of the Yorkshire terriers he had to have put to sleep a while back. I assured him it was normal to think you may see a departed pet in the house out of the corner of your eye where you are so used to having them around. What he said next blew me away. The dog he was seeing was our family dog from when I was a teenager. That dog was put to sleep in 1994! Apparently hallucinations are a big part of this disease. I learned later from my sisters that he had also seen my Step-Mother, who passed from breast cancer in 2015.
Sister 1 and myself flew to Boston to assess the situation a little over a week ago. I took the red-eye out on a Thursday night and a cousin of mine drove me the next day to Dad’s. It had been well over 2 years since I had seen Dad. He is not prone to traveling and due to the damn pandemic, I had not been out to see him. He appeared to have aged quite a bit and was very thin. I stayed at Dad’s. Sister 1 stayed in a hotel.
The weekend wasn’t complete gloom and doom. We discovered Dad has great long term memory. He could remember quite a lengthy cellphone password and talked about people and places from years ago. We made it fun and went out to a Chinese restaurant, which was a pretty big deal when we were kids. Dad and I still have the tradition of going for Chinese when I am home. We wanted to empower Dad to make his own decisions. We asked him what he wanted to see happen if he reaches a point where he can no longer be at home. Thankfully he agreed to see an assisted living facility while we were visiting. We told him the decision was up to him.
That Saturday evening I went to go visit my Mother who lives in a neighboring town. On the way back to Dad’s I had this awful foreboding feeling. No matter how much I tried to reason with myself, I just couldn’t shake this. Maybe I was tired still from the flight. I didn’t really sleep. I parked the car Dad no longer drives in the garage, went upstairs, and walked silently by his room. The door was open and it broke my heart to see my Dad laying there like a frail child. I went to my room and shed a few tears. Sleep would not come. I called Jayel in Phoenix because his voice has had a soothing effect on me since the get go.
Around midnight I could hear Dad calling me outside the door. He was standing in the door way with a hand written list of his medications that Sister 2 placed together. He asked if it was time to take a dosage. I reassured him that he was done for the day and to go back to bed. He told me that I hadn’t told him he was done for the day earlier. He was right. I hadn’t. An hour later I heard water running. I figured he had gotten up to use the bathroom. A few minutes later I heard water running again. He also has prostate cancer so it is not uncommon for frequent trips to the bathroom. Ten minutes later there is a knock on my door. I get up as I’m still wide awake, and Dad is fully dressed for the day. A friend is supposed to come in the morning to take him grocery shopping and he thinks he’s missed him. I reassure him again that he hasn’t missed his friend and it is the middle of the night. Dad’s concept of time is completely missing and I don’t know how to help that.
The rest of the night I lay there listening. Is he wandering the house at night? My stomach growls and I jump. I don’t hear him for the rest of the night and am grateful he is getting some rest. The next day he apologizes about knocking at such a late hour. So his memory isn’t completely gone. He seems to be aware later something is amiss. There are times my sisters and myself feel helpless. There is only so much we can do but we want to do everything we can.
There are days I feel so angry when I think of what an incredible mind Dad had. He could fix anything and was working on computers long before it became normal for people to have them in their homes. As a child he would restore old cars in the garage below my bedroom. I would hear the sounds of tools and metal on metal late into the night. He’s only 75. This just doesn’t seem f*cking fair! I look at Jayel’s 81 year old Step Dad and he still drives back and forth between Arizona and Minnesota. My next door neighbor is in his 90s and fought in WWII. Although his body is failing him, his mind is as sharp as a tack. Where is the justice? I want to beat my fists on the floor like a foul-mouthed 4 year old.
The day before I leave I’m helping Dad with his suspenders. He’s grown so thin that he has started using these. I asked him if these were part of the ‘old man starter kit.’ He laughs and runs one fore finger over the other in a ‘tsk, tsk’ motion. He asks me if I remember us kids doing that growing up. Indeed I do. It was probably me that started it. When Sister 1 or 2 was being reprimanded by him I often stood behind him so only one of them could see me and would repeat that hand motion. The man can’t remember what time it is but he uncannily can remember something obnoxious I did growing up. Over the weekend I would cast a glance over at him and he would raise his hands in the ‘tsk, tsk’ motion. Karma apparently has caught up with me.
Dad asked me to come and stay with him. I knew I needed to. I flew back to Arizona emotionally drained and exhausted. When I returned to work I withdrew my application for job I had applied for. I spoke with my boss about going back and working from Massachusetts for a while to take care of Dad. She seem to think it would be okay. We had had a meeting earlier in the day where someone who apparently doesn’t know or care what it is I do all day decided to change things up in our schedules. I voiced that I could not commit to that schedule. At this point I was really ready to scream. Or tell someone or everyone to go f*ck themselves. Just one more thing.
So, mid-May I will go back to Massachusetts. After being alone through the whole pandemic I am feeling privileged to have this time with Dad. I will stay a month and will transport my computer equipment to his home. Jayel will come with me for a few days to help get things set up. This way I can help Sister 2 take Dad to doctor’s appointments and I can make sure he is eating something besides trail mix and instant oatmeal. Where they are 3 hours ahead, I won’t start work until 11am. I sure hope this helps. I heard Dad’s friends say there was marked improvement with him after our little family get-together last weekend. I hope this lasts.
The morning after I returned I was laying in bed in between that silvery gray state of sleep and consciousness when I could see Dad standing in front of me holding a prescription bottle of his medicine. He was asking me if it was time for him to take it. I opened my eyes and could swear I could still see him standing there. As I came to, I watched his image slowly disappear into a fading silhouette. I checked the time and it was only 3:15am here, 6:15am there. Oddly enough he had woken me up a day earlier at precisely the same time with the same question. One night he called me at 3:30am here asking about his medication. I didn’t get upset. Any time my Dad calls will be okay. The day is coming when that phone will no longer ring with him on the other end. I cherish that voice on the other line.
I had abandoned this blog several years ago when the urge to write had just left for a while. Throughout this experience I have felt the need for an outlet. Not just an outlet but a need for connection with others who may be experiencing this same thing with a loved one. Today I am just getting this off my chest. I find myself crying at odd times, like even the middle of the night. And I know I need to get my shit together soon because I cannot show up in Massachusetts an emotional wreck.
I want to create an area where I can share some of the research my sisters and myself have done on some of the effects of Dad’s medications. It turns out that his cancer treatment may effect his memory. These are things I want to share. If there are others that need support, I want to be able to help. I am fortunate enough to have two siblings to share this with. Not everyone is as lucky.
We live a pretty good life in Arizona so I will include that here too.