Trying to be a better caregiver
I don’t remember doing what my mom’s friend said I had done.
By my best guess, it was sometime in the very early 1980s. Mom had bumped into her friend, someone she’d known since they were kids, at one of the local hospitals. They likely were both in a hurry and only had time for a very quick conversation they probably soon forgot about. But mom’s friend told me many years later, sometime after mom had passed away in 2008, she very clearly remembered me pushing my father in his wheelchair following an appointment with his doctor. She also told me it really bothered my mom that I had to do that.
There is a photograph in my office of mom and dad’s wedding day in October, 1969. Dad is standing up straight with a big smile across his face. That 23-year-old man had no idea of what lay ahead of him over the next 40 years. He had no clue how devastating a Multiple Sclerosis diagnosis would be to him, and to his family, from the time he received it around the time I was born until he passed away in June 2009, a year to the day after cancer took away mom.
I never knew the man smiling down at me from that picture. Yeah, there are photographs of the two of us together when I was very young where you can’t tell he has a disability. And I have very fuzzy memories of him coming home from work circa 1974 or 1975 in his 1969 Oldsmobile Delta 88, getting out of the car and walking to the house with very little, if any, difficulty.
But I can very clearly remember how MS shaped what are now very vivid images of my father. He needed a cane to walk by the time I was in kindergarten. He needed crutches when I was in second grade. He was using a push wheelchair to get around not long after that, and then ultimately an electric wheelchair. He was in a nursing home by 1990 after he’d reached the point where it had become difficult for mom and I to give him the care he needed. He spent a lot of time in a wheelchair or his bed. He couldn’t use his left arm. He could barely speak. My last memories of him are how he went from having a little trouble breathing to passing away in the span of three weeks.
You know what else I see right now? I see an 11-year-old boy terrified of what would happen to him and his parents after dad came home in May 1982 and told me he’d lost his job. I see a middle schooler who was maybe 110 pounds straining to pick up his father off the bathroom floor after he’d fallen and put him back in his wheelchair, and sometimes also having to clean up urine. I see an angry teenager lashing out at his dad, verbally and physically, because he’s angry he has to take care of him after school when he’d rather be anywhere else but home. I see a college sophomore who is relieved outwardly, and celebrating inwardly, when mom decides she no longer can bear the strain and dad moves into the nursing home and, except for Sunday dinners, holidays, and a few other occasions, stays there until he dies.
These are images that will stay with me, and haunt me, as long as I walk this earth. But I don’t want to forget them, either.
I’ve told Cindy a few times the situations I faced with dad when I was a kid helped prepare me for the challenges we face with Nolan. I can handle his occasional 3 a.m. wake-up calls. I can take a deep breath, scrub shit off him when he has an accident, then clean the bathroom and make it look as though nothing ever happened (are you hiring, Servpro?). I can withstand his meltdowns and the physical aggression that sometimes comes with them. No, dealing with those situations is never pleasant. Yes, I’ve yelled, cried, or punched a wall – perhaps even done all three a time or two – when I’ve been really sad and frustrated. But I know Nolan is depending on me to help him when he needs it – like right now, for example. He just sat down on the toilet with very wet pants. There also is a puddle underneath the kitchen chair.
There were times the younger version of me made a face and uttered a few choice words about having to help dad. Granted, a lot of teens are selfish meatheads, but I took it to another level. I sometimes would jump on my bike and tell dad I’d be home in a little bit, only to stay out a little bit longer than I should have and potentially put him in situations where he could have gotten hurt really bad had he fallen. I’d tune out my grandparents when they would tell me how important it was to be there for dad, and how much he needed me while mom was at work. Mom hired caregivers to come in a few hours a week and be with dad so I could have a little more freedom, but it was never enough, if you asked me. I didn’t go to visit him in the nursing home as much as I should have after I moved back to the area in 1997.
Please understand that I loved my father very much, and I have a lot of happy memories of him. He’d sit on the steps to the side door of our house and play catch with me until he got tired. We’d watch “The Dick Van Dyke Show” together. I got choked up seeing him sitting in his wheelchair at the front of the church when Cindy and I got married. I was proud the first time Cindy and I took Nolan to the nursing home to see him. Yeah, it goes without saying I was devastated when he passed away.
What it boils down to is I was always angry at MS and the effect it had on our family, and dad bore the brunt of my frustrations for many years. I’m ashamed of my attitude, and the way I acted toward him. In moments of anger and frustration, dad would tell mom and I he never asked to get sick. Believe me, I think about that a lot when it comes to Nolan. He sure as hell didn’t order a diagnosis of nonverbal Autism to go before coming into this world.
Marriage and fatherhood matured me. I saw dad a little more often after Cindy and Nolan entered the picture. I was his power of attorney. I tried to make sure he had what he needed at the nursing home after mom got sick and ultimately died. I wanted to be a better son, and now I want to be the best father I can be.
Am I trying to atone for the way I acted toward dad years ago? I can’t lie; maybe I am a little. But I just know that I love Nolan and always do the best I can to make his life as good as possible. I don’t think about it when he needs help. I help him, just like that kid tried to help his father by pushing his wheelchair years ago.