It wasn’t until the birth of my children that I felt the weight my own mother had carried. Diapers, tantrums, difficult meals. Not as she raised my brother and me, but as she took care of a child she never imagined she would have: my dad.
“She keeps him connected to life,” my grandmother would say about my mom’s role as my father’s sole caregiver.
My dad died at the age of 66, after more than 10 years battling early-onset Alzheimer’s. I don’t think “battle” is the right word, though. You can’t win. You don’t even have a chance. But he had it better than most if one were to rank quality of life with Alzheimer’s.
My mom always took my dad to all her activities. During Zumba, he would stand in the back of the room and dance to the beat of his own drum. If my mom noticed him getting too close to someone in the class, she’d take him by the shoulders and move him out of the way.
During tennis, just as she took turns in a round robin, so too did the other players take turns keeping my dad company on the bench. Sometimes he’d leave with a ball in his pocket, or sometimes it would be someone’s keys.
No one ever dared to say anything.
He loved to swim, although he wasn’t able to move his arms and legs at the same time in his last few years. On some days, he didn’t want to change into a bathing suit. My mom stopped fighting him on this after a while and he would get in the pool with his clothes on. Getting him out of his wet clothes was challenging. So was getting him in and out of the car. And getting him to take a shower. And getting him to go to the bathroom, where my mom cleaned up after him. She didn’t admit this to me at first. I should have assumed she did, but it wasn’t real to me until I saw the adult diapers and pee pads. I tried to visit at least for a weekend every two months towards the end, but once I found out I was pregnant, the Zika virus kept me from flying to Florida from New Jersey in his last few months. But in my last visit, I was alarmed they were living with such a stench in every room of their home.
He typically ate cereal for breakfast. He could manage to eat it without assistance as long as my mom put the spoon in his hand and showed him the bowl was right in front of him. He especially loved sweets. She would give him a donut, cookies, or some pudding topped with whipped cream after every meal. At one doctor’s visit, his cholesterol and weight had gone up, so my mom stopped giving him these treats. On the next visit, when my mom mentioned this, the doctor prescribed sweets immediately. Eating was his last joy in life. The doctor didn’t care too much about my father’s health stats. That was not what was going to kill him, he joked.
There are things you expect to do as a parent: change your child’s diapers, get them dressed, feed them, give them experiences to teach socialization skills. There are things you’d never expect to do as a spouse: change your partner’s diaper, get them dressed, feed them, give them experiences to keep them socialized, all the while maintaining your own mental health and well-being. There are things you never expect to see as a daughter: your mom changing your father’s diaper, feeding him, getting him dressed while he punches his fists in the air, screaming, “I’m going to kill you.”
In the three and a half years since my father died, it’s all still pretty traumatizing, and we’re always processing what we experienced, what we saw, what we needed to do to help give my father the best quality of life as possible. And one of the ways I choose to reflect is by recognizing how my father’s Alzheimer’s and my mom’s devotion to his care has shaped me, including as a mother to my three-year-old and seven-month-old sons.
My dad slept a lot the last time I visited and when he was awake, I don’t know if he recognized me — or even realized I was there, for that matter. But the day after I returned home, my mom texted me that my dad exclaimed, “my family was here, beautiful.” He was in there, somewhere. Ever since my sons were both just a few hours old, I have always treated them as though they knew I was there, and who I am. I imagine them as a blank book. They are in there, somewhere, and reading, singing and talking to them starts filling up each page.
I think about my wedding day, about two years before my dad died. I would like to think he knew it was a happy occasion even if he didn’t really understand what was happening. I stood between my parents and linked arms with them as we walked down the aisle. When we got to the front, he didn’t want to sit and got agitated. We calmed him down and he finally got in a chair, albeit after a few minutes of commotion. I wished we would have prepped him in advance, explaining what was going to happen. I don’t know if he would have understood, but it might have relaxed him in the unfamiliar situation. That’s something I always do with my boys now. Before we leave the house, have a meal, or start a new activity, I reinforce what’s to come a few times to prepare them and help them anticipate change.
Eating out with my dad was always difficult. For a while, my mom would ask him what he wanted to eat – offering a choice between a few options – even though it would be easier on her if she just ordered for him. If he chose a hamburger, she helped him put both hands around it, though sometimes that could take a few minutes if he wouldn’t release his clenched fists. Salmon was probably the easiest. She cut it up for him and then put the fork in his hand. I observed how important it was to help him make decisions, to acknowledge he was someone who could make a choice, and I think doing this with my toddler has helped build trust and makes meals go more smoothly.
There was a time early into his symptoms when my father was aware what was happening to him, but still, it wasn’t easy rationalizing with a man in his fifties, telling him what he can and can’t do. The key here was to help him feel in control while keeping him safe. My parents moved to a private community that was a two-mile circle with security guards stationed at the two exits. He couldn’t drive anymore, but my mom allowed him to walk by himself around the circle. I can’t tell my toddler “no” every time he wants to run, climb or jump on something. But saying “yes” to the low risk activities helps him feel in control while keeping him safe, with a band-aid or two every so often.
Whenever my father was agitated, there were two techniques that helped diffuse the situation I often use with both my boys. The first was to divert his attention away from whatever was upsetting him or when he was doing something that wasn’t safe. If he was pulling up the couch cushions and throwing them towards table lamps and drinking glasses, my mom would open the door to the back porch to let him wander in an enclosed area. Whenever I sense a toddler meltdown brewing or if my son is doing something he shouldn’t be doing (like knocking on the bedroom door when his brother is sleeping), rather than tell him to stop, I immediately suggest a new toy or ask if he wants to FaceTime with grandma to distract him.
The second diffusion technique is to play music. I had put songs my dad was familiar with – from his childhood, from mine, from my mom’s Zumba class – on an iPad shuffle and clipped it to his collar. He immediately started tapping his feet and clapping his hands. I have music from my toddler’s weekly music classes on a playlist and have his instruments handy when I need to move him to a new activity in a new area (like away from the bedroom door when his brother is sleeping).
It’s devastating to stop and think I’m raising my boys using the same tools and techniques that helped my mom give my dad a good quality of life, even in those horrific final months, before he died peacefully in home hospice. But I’m also raising them to have the characteristics he possessed throughout his life before Alzheimer’s – like his kindness and how he treated everyone the same. I know he’d be proud of me as a mom.