Robert’s dementia has provided me with an early education in healthcare topics I’d just as soon have waited to learn: everything from the symptoms and diagnosis of frontotemporal dementia and its variants to traveling toenail maintenance services.
It is astounding how long the human body will fight and persist in the face of impossible odds. Even as Robert has declined and the quality of his life isn’t what any of us would wish for ourselves or our loved ones, his body keeps on. To be fair, he’s been pretty happy along the way. The dementia patient doesn’t know what they don’t know. Or maybe at their core, they understand it all. We have this one precious life. We hold on with all our might.
Another last time
Our most recent visit to the clinic would be our last. Getting Robert into my car required a series of carefully orchestrated maneuvers and many assurances that he would not fall, “I’ve got you, honey.”
First I guided Robert to the Camry. I shuffled him into position roughly parallel to the passenger seat.
Tapping on his left leg, I said “Can you lift your leg into the car, sweetie?”
“Yes, I can do that.”
And then we waited. For 15 minutes.
The shade of the sycamore in the parking lot slipped off the passenger side. I tapped again, and moved into the shade on the other side of the door, still holding Robert under his arm, steady at his elbow. The sun beat down, its harsh glare reflected off the roof of the car.
Zero patience
I am easily frustrated by waiting. I’m of the “Don’t list it, just do it” school of behavior. If a task will take less than two minutes to complete, don’t put it on a list for later, just take care of it.
Getting into the car should take less than two minutes, but there we were stretching the activity into a yawning afternoon float down a lazy river in a hot, black inner tube. No steering, no paddling, just floating.
“You’re getting hot, honey. Let’s get you into the car and the AC so you don’t overheat.”
“I like the sunshine. It feels good.”
“Yes, but you’re wearing too many clothes to stand in the sun.”
I tapped again and waited another 10 minutes. Sweat was starting to soak through my shirt, below my bra.
“Honey, we need to get you to the doctor’s office or we’ll have to reschedule your appointment.”
“Sweetheart, would you like to stop for an ice cream cone after you see the doctor? Yes? Then we need to get going. Can you get into the car?”
“Robert, I’m getting really tired of standing here.”
I’m ashamed to admit to the impatience I felt on these outings. Robert could no longer place his body in space. The act of lowering himself into the bucket seat of my low-slung sedan was like hurling himself down a flight of stairs. He was terrified of where he might land.
Have you ever had the experience of backing up to sit down, having calibrated for a 12-inch drop only to find the bench 20 inches below your bottom? You find yourself in freefall for the last 8 inches and land without grace and off-balance. This was Robert’s experience all the time, every day.
A little help, please
Elysia and Daisy came outside to help. Cajoling, humoring, and directing with more strength than I could muster, they lifted Robert’s bottom into position and coaxed him down, finally lowered into the seat. I gently guided his head to clear the doorjamb. I helped him lift his right foot to join his left in the car and tapped his right knee. He pulled it inside the frame of the car. I reached across his chest to fasten his seat belt and shut the door.
After a mere 30 minutes, we were on our way. I wiped the sweat from under my eyeglasses and cranked up the AC.
We repeated this exercise at the clinic with a security guard hovering to protect the fire lane. He could see that we were moving as fast as we could, but even so, he anxiously scanned the entrance for emergency vehicles.
Finally, having released Robert from the car, we began the long shuffle to the “Life Stages” department.
Can I help you, ma’am?
Anyone would find the department almost impossible to locate. A long corridor of uninterrupted gray walls wends its way past several check-in counters before dead-ending at a tiny all-in-one alcove reception desk/waiting area. A laser-cut privacy screen a few feet long separates the four-chair lounge from reception. This miniature waiting area is an apt metaphor for how we value the aged among us. Best to be hidden from view, invisible, taking up as little space as possible.
After waiting a few minutes, we were called into Dr. Canio’s office. She greeted me with a gentle nod and smiled at Robert. She guided Robert through the cognitive assessment again. He scored a 7, down from his previous score of 15. A score of 10 or below indicates severe cognitive impairment. Robert’s decline marches on.
My stomach fluttered as if I had just ascended the last peak on a roller coaster before the final drop. I was sick. Sick for him, sick for me, the kids, all of us. Robert was leaving us in the most unimaginably cruel way possible. Simple tasks like getting into the car sent up red flares of warning. Nothing was easy for my dear, sweet husband. Why was I so impatient?
Exploring our options
Dr. Canio and I chatted about Robert’s general state and then opened the discussion to what concerned me.
“Bringing Robert into the clinic is very difficult. The GI issue we exchanged messages about a few weeks ago seems to have cleared up on its own, but if he does need to be seen about something like that, I’m not sure I could bring him into the clinic again.”
“We do offer the Primary Care at Home program for patients like Robert.” Pause. “If we enroll Robert in the program I would no longer be his doctor. He would be assigned a new primary care physician.”
“I see.” Pause. “Robert lives in a board and care home. Can we still use the Primary Care at Home program?”
“Yes, the program is for patients who are unable to come to the clinic. It doesn’t matter where they live.”
She explained that the Primary Care at Home program offers palliative care.
“Dr. Canio, do you think it is time for palliative care?”
“Yes. I do.”
I trusted Dr. Canio. She has always been a step ahead of me, firmly, but forcefully hefting me onto this bucking bronco. She knows how this rodeo ends. I was resigned, suddenly hollow. I agreed to palliative care for Robert.
Angels in our midst
Dr. Rosemary Lynn Chang, Robert’s new palliative care physician, phoned the next day. She asked me about Robert’s life, his upbringing, and our kids. She asked about his interests, the activities he enjoyed when he lived at home, and what he enjoys now.
Later that week, Dr. Chang visited Robert at Gardenia Place. She spent time with Fatima and the rest of Robert’s care team, providing suggestions and redirection to improve his day-to-day experience.
Could the curtains in the front room be opened between 8 am and 10:30 am? It was important for all of us to get sunlight in our eyes in the morning. This helps maintain our circadian rhythms and improves our sleep.
The bottoms of Robert’s feet were red and itchy. Dr. Chang would order a prescription strength cortisone cream for daily application. Could the team wash his feet before applying the new ointment?
Dr. Chang engaged Robert with an affectionate touch on his shoulder. He looked up, his rheumy eyes coming into focus. She recounted seminal events in his life. Her bright brown eyes never left his face. When Robert lit up with the reminders, her face broke into a smile too. She was with him fully. Attentive and kind.
“He is a lovely man,” she said.
“Yes. He is.” I exhaled with relief.
Called to this work
Palliative care providers are called to this work by a love for individual humans and a respect for their dignity as persons. After so many battles with insensitive neighbors, poorly trained police personnel, and my own impatience I have found tremendous relief in this unconditional care for my husband. Watching Dr. Chang with Robert brings the ache of recognition to my chest.
This is love. Overwhelming.
Every reminder of what we have lost, every moment with the shell of the man I love, hurts unbearably.
I am waiting, impatiently, for this feeling to go away.
Sharon,
What a beautiful and loving entry into your oh- so- valuable journal/blog.
THANK YOU AGAIN AND AGAIN for all of your sharing of this process, which reflects many of my own feelings and experiences.
Peggy
Thank you, Peggy. Your comments are so uplifting to me!
Sharon