We’ve been in Victoria for a couple of days and are going home tonight. Stephanie has returned to work after a year of maternity leave and hasn’t found being a single, working mother easy when it comes to child care. Lily seems to pick up every cold and flu going the rounds, and every time she has a sniffle she must stay home from daycare. So, we fill in when we can. Bill loves being with kids and even though Lily has a slight cold she giggles heartily at his antics.
After leaving Steph’s, we join Nana for supper at Parkwood and I note a steep decline in her ability to communicate. She is silent all through dinner and back in her suite barely answers the few questions I ask—sometimes with something that has no connection to the question. But I don’t know whether it’s her hearing or her understanding that’s causing the problem. Now it’s after nine o’clock and I’m anxious to get on the road. “Can I help you get ready for bed?” I ask Bill’s mom.
We retire to the bedroom and after she’s washed and in her nightgown she takes her hearing aids out. Bill’s step-sister, Carolyn, has been taking care of all of Mary’s medical appointments for the better part of this year and looks after everything to do with the hearing aids.
“Where do I put these?” Mary asks, holding the hearing aids up.
I look around for someplace that looks logical and see a box on the dresser top, one side marked L, the other R. “Here,” I say.
“And I open the little door?” she says.
I don’t know anything about how the hearing aids work, except that they have batteries, and have no idea what she’s talking about. “I don’t think you need to open anything.”
“And I open the little door?” she repeats.
“Uhm, no,” I say. “Just put them in the box and tomorrow morning the care aide will help you with them.”
She picks up the keys to her suite. “And I put these in my eyes?” she says.
Holy shit! I take a big breath and gently take the keys from her hand. “Nope. Don’t put those anywhere. Let’s just get you tucked in.” I wait until she’s asleep before we leave and am thankful for no traffic.
Early the next morning I call Bill’s sister, MaryAnn. She is four years younger than Bill, but has power of attorney for her mother and now takes care of most of Mary’s affairs.
“It’s harder and harder for Bill to be away from home so we don’t visit your Mom as often as I’d like to,” I tell her, “but last night I noticed how much she’s deteriorated in the past couple of months. The receptionist at Parkwood told me she doesn’t communicate with anyone there. She sits alone for most of her meals and doesn’t go to any of the activities. Your Mom told me her friend was ‘taken away’ from Parkwood a few days ago, and that she left without even saying goodbye, and she was angry about that. She didn’t seem to understand it at all. And when I got her ready for bed I confused her to the point she asked me if she should put her keys in her eyes. I think she needs to be in twenty-four-seven care.”
The following week both Bill’s sisters fly out and together with Carolyn we spend two days searching for a long-term care facility for Mary. We’re told it will take two to three YEARS to get her into a subsidized bed in any facility. The facility we like the best says the same thing, but the manager tells us they have a room available that is not subsidized. The price is $6,800 a month. She tells us the room will go quickly. We talk about it and decide that if it’s necessary the four of us can cover the cost. We agree to take it. Though we don’t know it then, six months later Veterans’ Affairs will pick up 80% of the cost, retroactively; which we're all very grateful for.
The next day MaryAnn calls me at Stephanie’s, where we’re looking after Lily. “When Cindy and I got Mom to Selkirk,” MaryAnn says, “she told us she didn’t live there and wasn’t getting out of the car. She told me to fuck off. I said I would, right after she got out of the car and was settled in her room in that building.”
I can imagine the scene too well and can’t help laughing. MaryAnn laughs, too. Tragedy loves dark humor. “Sorry,” I say, “she’s feisty.”
“More like stubborn,” MaryAnn says. “We had to call Carolyn. She was able to talk Mom out of the car.”
“Strength in numbers,” I reply, remembering how I’d promised Mary we would not PUT her anywhere, but we’d done exactly that. “How’s she doing today?”
“Better,” MaryAnn says. “We’ve moved her stuff. I’m cleaning her suite tomorrow.”
“I’ll be there,” I say.
Cleaning the suite is another eye-opener for me. It’s filthy, and I can’t believe how much stuff Mary managed to get into 500 square feet. It hadn’t looked overly cluttered.
“She wasn’t letting the Parkwood staff in to clean,” MaryAnn tells me. “She didn’t let them do her laundry either.” Neither of which Parkwood staff had ever told me.
Carolyn is there, too. Things Mary won’t have any use for now are divided. Useable things none of us wants will be taken to thrift stores, and garbage will be taken to the dump by Carolyn’s husband. It makes me think about how much stuff Stephanie and Chris would have to deal with if I were to die. Silently, I vow to do a cleanout when I get home. When we’re finished, MaryAnn tells me she and Cindy are flying home the next day.
“Okay. Safe trip.” I’m feeling very relieved Mary will be fully looked after by others 24/7, and thankful for Bill's sisters.
On our way home, Bill and I drop in to see his Mom and Mary takes us on a tour of her floor. I note again what a lovely-looking facility it is, and that there is a wonderful view of the Gorge waterway from both the dining room and Mary’s room. But it is a locked-down floor. When we go to leave, she accompanies us to the elevator and I'm reluctant to punch in the code with her there. A staff member suddenly appears and takes her hand and says, "Come on, Mary. Let's go for a walk," and they walk away together. I can't help the tears that flood my eyes.
Selkirk will do well for Mary, however I’ll find out later that just because someone is in a full-care facility, the need for a lot of family involvement and advocacy doesn’t end. That in fact it can actually increase.
The Driver’s Seat
Last month Bill got his second letter from DriveAble. Six months before that, he’d gotten his first, courtesy of our doctor after he’d asked me about Bill’s driving and I’d told him Bill could still drive safely, but I went with him whenever he drove. We’d had to go to Courtenay for him to take a driver’s test, which the examiner said he passed with flying colors, but he would be tested again in six months. However, for the last year I had been going with him whenever he drove anywhere, first because he’d gotten lost getting from A to B more than once and second because I’d noticed he had some trouble reading signs we passed and street signs. This time, I thought it was time for him to stop driving.
I reread the letter requiring the test aloud and said, “Bill you’re a good man. You haven’t had an accident since you were a teen. How would you feel if you hurt someone? Do you think maybe it’s time to stop driving?” I expected resistance because others at the support group had said how much of a fight it was to get their husband, or father, or wife, to give up their licence, and I knew it would mean a big loss of independence for Bill.
To my surprise, he immediately said yes. The next day we went to Service BC, where he voluntarily turned in his driver’s license. A week after that we went shopping for a scooter for him. Whatever humiliation he might have felt at being reduced to driving a scooter, he didn’t let it show.
Interestingly, unlike when he’s walking or when he was driving a car, he hasn’t had any trouble finding his way back home when he’s been out on his scooter. Not once in the fifty years he drove a car had I seen him stop and ask for directions when he was lost. I wonder if maybe driving a scooter, which is a visible sign he’s disabled in some way, gives him permission inside himself to ask for help if he needs it.
I told him I’m thinking about getting a scooter, too, so we can scoot together. He thought that was a grand idea. Ten years into Alzheimer’s his sense of humor is still intact.