Dressed in his pajamas and clean white T-shirt, he walks into the room, intensely focused and looking around for something. I’m lying on the sofa-bed in his study/guest room, reading a book before going to sleep. I’m not sure if he sees me, his vision so compromised by Glaucoma, or if he is just so focused on the object he is in search of that he doesn’t zero in on me.
“What are you looking for, Daddy?” I ask. A bunch of nonsense syllables painfully greet my ears.
He stops; tries again. “You know, the hemdebree … I mean the mshorfumres… you know… the word …” Getting frustrated, he laughs sheepishly.
Sensing he is trying to do something, I ask, “What do you want to do, Daddy?”
“You know, make it colder!” he says.
“Oh!” I say triumphantly, “The thermostat?!”
“Yes!” he says with great relief written all over his face. His body relaxes. “Do you know where the thermostat over here is? On the other side [of the apartment] it’s set but over here you can do what you want.”
It was my precious Daddy, as always making sure I’m taken care of. Despite his Alzheimer’s, the bedtime ritual is still in place, making me feel so loved and my Dad feel like he’s doing his job as the protector and family leader.
But that night his brain couldn’t retrieve the word he wanted and allow him to communicate it. Not only that, nonsense syllables came out in seemingly uncontrollable patterns. He knew what he wanted to do — the habit and his sense of hospitality, service and loving care are all innate. But the damn words wouldn’t come. Sadness consumed me when I saw my Dad struggle like that. Especially because that act was such a symbol of his core being.
It’s looking back this way that reminds me to focus as much as possible now on the things both Mom and Dad can do, and not so much on the things they can no longer pull off.
It would be so easy to constantly be taken down by what feels like relentlessly increasing deficits in their abilities and functioning levels. I could continuously be rattling off a list of the things they can no longer do – I notice these things, and choose not to dwell on them. I adjust their support and equipment and hope that some deficits are temporary, which isn’t altogether Pollyana-ish – sometimes they actually are!
For instance, a few months ago when he was very ill, Dad couldn’t even find the bathroom in his apartment. Now he has no problem doing that again. A few weeks ago, Mom couldn’t get out of her chair without help, but now with physical therapy and antibiotics for an infection, she is stronger and can stand up independently with standby assistance.
When I catch myself feeling stressed out and low about the deficits, I redirect my mind immediately to the strengths. I list off and celebrate the things Mom and Dad can still do.
That night when Dad uttered gibberish, I was so happy that he was still aware of the thermostat, still had his loving and caring personality, had gotten ready for bed by himself and had a sense of being in charge of his home. When I feel sad and scared that Dad can’t take a walk by himself safely, I focus on being grateful that he can walk at all – that he loves to walk because it helps slow down the Alzheimer’s Disease. I’m happy that he can still hold Jackson’s leash and be in charge on the walk. I love that he’s very strong and can see and appreciate the beauty around him. I’m grateful that he has an activity that keeps him happy and occupied – even if it’s one of few.
When I feel overwhelmed with fall prevention efforts for Mom, I focus on the fact that she can walk and we aren’t dealing with her being bedridden or having bed sores. I’m grateful that she’s willing to do her physical therapy and will even do some seated yoga with me. She has a hard time cutting her food now, but she can feed herself independently, and she still enjoys choosing food and eating it. She loves going out to restaurants so much that it’s worth any extra effort involved.
There are so many things my parents can still do. I’m not in denial about the skills they’ve lost but I choose to value and celebrate the many skills and activities they can do. That focus keeps me from drowning in sorrow and my attitude encourages theirs.