Perceptions

It’s getting hard. In the daytime, he’s fine, but recently Bill started doing things like getting up at night and peeing in places other than the bathroom. I don’t sleep much anymore. I think I must be listening for him to get up so I can get up fast enough to make sure he’s in the right place. But even when I’m up in time, directing him to the bathroom can be difficult.

First I have to get him to wake up enough to tell him he needs to wait until he gets to the bathroom to pee; then I have to make him understand he should pee in the toilet, not on the floor. That’s sometimes hard to do because his perception of language has changed. Every time I speak now, I have to remember to use short sentences and careful, step-by-step instructions.

Who knew there are six steps to voiding in a toilet? “Step forward. Let’s pull your pyjamas down. Aim there. Good. Now flush it. Good. Step back. Pull your pyjamas up. Good. Let’s go back to bed.”

Sometimes I have to repeat myself several times, in different ways, before he gets it. There have been times when he had to go so badly he couldn’t wait, and while I was busy trying to redirect him he was already peeing.

The scooter is finished, too. That happened after the third call I got from strangers telling me Bill was stuck somewhere. It came from the climbing gym in Campbellton, where Bill had gone to ask someone to call me.

When I got to the gym, Bill was waiting outside. He told me he’d run out of charge and pointed down the block, then took me to where he’d driven the scooter into a cement wall. He said he’d been driving around in circles for a long time because he couldn’t make the scooter turn to the right.

I looked and saw the fender on that side was bent inward. It was Sunday. Most businesses were closed but I saw people across the street at A-1 Radiators, so I went over and asked them if I could push the scooter there and plug it in to charge it. They said they were only there for a short time because they had a rush job to do, but sure, I could plug in for as long as they were there.

Bill and I pushed it across the street and one of the fellows looked it over.

“Fender’s bent,” he said. “You’ll never be able to drive it home like that.”

“I know,” I replied. “I’ll have to call someone with a truck to come and get us.”

Without another word, that man and another went to work and fixed the fender. When I asked them how much I owed them, they said, “Nothing.”

As I drove behind Bill as he made his way home on the scooter, I thought about the kindness we’d just received and the many other kindnesses people had given to us. Friends who’d responded to my calls when I’d looked for Bill when he’d been gone too long and I knew he was lost and hadn’t found him. Complete strangers who’d taken it on themselves to help him or to call me when they discovered he was in trouble.

Like the policeman who’d seen Bill wandering in a part of town I’d never have thought to look for him because it was so far away. The policeman played hockey in a recreational league and knew Bill from the arena. He was on duty, driving city streets. He recognized Bill, and also the fact Bill looked lost. He’d stopped his car, asked Bill if he wanted a ride home, and brought him home. When I came out of the house, the policeman told me about his connection to Bill and said he hadn’t known Bill was sick, but he knew what Alzheimer’s looked like and he was sorry to see Bill had it.

“Yes,” I replied. “I’m sorry too.”

“Can you give me a picture of him I can put at the station,” he asked.

I’d given him one, with my thanks.

And a woman who had invited Bill into her home after he’d seen her in her yard and asked where he was. Then she’d called me. When I got there, he was in her kitchen eating cookies and drinking juice.

And the person at the gym who called me. Thank goodness Bill still knew to ask someone to call when he was in trouble, and that our phone number is in the phone book—or maybe he even remembered it. How long he’ll know to do that is anyone’s guess. I’m so thankful for the kindness that exists in the world.

*****

As I write this, I’m acutely aware of how this disease changes lives, and my perceptions of what’s good and what’s not good for us.

Even without him having a scooter, I can’t always keep track of Bill. He loves to walk, which I’d thought was a very good thing. I like to walk, too, but not at his pace. He can cover more than eight kilometers in just over an hour—something I learned the first time the policeman picked him up. Since then, I’d had to call the RCMP to find him twice more because I’d searched for more than an hour and he was nowhere I’d thought he’d be.

I’d put signs on both doors saying BILL, DO NOT GO OUT BY YOURSELF. CALL ME FIRST. But Bill often ignored them. So I had a chime alarm installed on all the windows and the doors. The chimes sound whenever any of them is opened. Since I had them installed, I usually catch him before he gets out of the driveway, but not always. And I’m reminded of the question asked so long ago by the second psychiatrist at UBC— “Are you having any trouble handling him?”

I would have to think about my answer to that now. I’ve always loved Bill’s strength, determination and independence, but now those same qualities could cause him harm.

ELEVEN

Returning

October, 2015

“Lily loves being outside,” Stephanie says on the phone, “but I’m so tired after work I don’t have the energy to take her out. Especially in the winter when it’s raining and cold. I want her to have a yard she can go out in whenever she wants to. I hate living here. I want to come back to Campbell River.”

“Okay,” I say. “Sell your condo and I’ll help you look for a place.”

“Condo prices have bottomed out. I can’t sell it now. I’ll lose too much money and won’t have enough for a down payment anywhere else. Besides,” she adds, “I don’t want to live alone in a house.”

We’ve had this discussion more than once. After she’d first mentioned returning to Campbell River, I’d even looked at a few places on the lower end of prices, but she had not wanted to come and look at anything I’d found. Now I take a minute to think, and all of our past conversations race through my thoughts.

Bill and I have a 1,400 square foot rancher which has a kitchen, a living room, and a family room off the kitchen that I’ve divided into two areas, one of which has a table and chairs for dining; the other of which is my office. There are also three bedrooms and two bathrooms. Two of the bedrooms are unoccupied. Plenty of room for them. But Stephanie and I do things very differently. I’m worried we’ll have trouble sharing the same space full time.

Lily isn’t her only child. Her oldest is in Victoria, too, but she doesn’t live with Stephanie. She shares a house with five other girls who are at university with her and has very little time to spend with her Mom and Lily. Now Lily is five. Stephanie’s a single mom, which hasn’t been easy for her. Besides being too exhausted to take Lily out to play when she gets home from work, problems with childcare arise every time Lily’s sick and can’t go to school or daycare and Stephanie has to work, or when school and the daycare are closed for holidays and Stephanie has to work.

I think about her troubles a lot because I’ve been struggling, too.

For a while I had Care Aides come to the house for three hours a day, three days a week, which let me go out alone and get some things done or just go for a coffee with friends. But the Care Aides aren’t allowed to do any housework, prepare meals, take clients anywhere—including for walks unless the walk is around the house and deemed ‘safe’. And it’s rare for the same Care Aide to come twice in a row. Workers didn’t get to know Bill and he didn’t get to know them. He liked some of them and I saw how hard some of them worked to engage him, but he often told me when I got home he had no idea who the person with him was, and he didn’t understand why that person was there.

Also, he still wanted and needed to be physically active. He loved to swim, so a while back I petitioned our Case Manager for an aide who would go to the pool with him. She had to ask for special permission, but it was sanctioned. There was only one worker who wanted to do that, which I thought was a good thing because he and Bill would get to know one another. I took Bill to the pool and the worker met us there.

At first the pool worked out well. Bill was getting to do something he loved without me having to worry about him, since he could now get lost going from one end of the pool to the other, and I was free to swim as much or little as I liked while the Care Aide watched him.

Then I decided I could better use the free time I had to work at home. After that, every time I took Bill to the pool I got a call from the aide an hour after I’d dropped Bill off to say Bill was ready to come home. I asked the aide if he couldn’t just take Bill across the street to Tim Horton’s for a cup of coffee and a donut, but he wouldn’t do that. Which meant that instead of the three hours of respite I was supposed to get, I got one and paid for three. Eventually, I cancelled the worker.

Which meant I again had Bill 24/7 with no respite. We went swimming, I took him to the Eagles to play pool and to the golf course to practice putting, or to the driving range. But between trying to keep him occupied, doing my own work, and getting little sleep, I was fried.

I signed him up for the Campbell River Adult Care Program three mornings a week. Thankfully, he loves it and it does give me a break, but it doesn’t seem to be enough. I’m still up with him several times during the night, am exhausted, and need a solution that lets me get a good night’s sleep.

Thinking about all this in a rapid, movie-frame style of thought, I decide living with Stephanie could be mutually beneficial. She can help me with her dad; I can help her with Lily. I don’t expect it to be permanent.

“Okay,” I say, “come. You can move in with us and then we’ll look for something suitable for you.”

With speed that amazes me, she finds long-term renters for her condo, does some renovations that are required there, packs up, and arrives mid-week. She has also secured a new job in Campbell River as a Case Manager for Home and Community Care that will begin in a few weeks.

*****

We live in a cul-de-sac, one short block from the elementary school where Lily will go back to Kindergarten on Monday. The neighborhood is full of kids. On her first Saturday here, she meets several kids who are skateboarding and riding bikes at our end of the street. On Sunday, she’s thrilled to discover the freedom of being able to run next door and knock on the door and ask if the child who lives there can come out to play. She loves being able to be outside whenever she feels like it.

Stephanie seems happy with the arrangement, too, and I’m getting used to having them in my space. But neither she nor I reckoned how Bill would take to this big change.

On Monday, I get a call from the manager of the Adult Care program. “What’s happening at your house?” she asks.

“What do you mean?”

“Bill came to me,” she says. “He said he doesn’t know who the damn kids running into and out of his house are. He said you and he had your kids and they grew up and he doesn’t want more kids around.”

“Oh oh. Well…” I begin, and tell her about the change. At the end of the conversation I say, “I’ll talk to him.”

That afternoon I pull a chair beside his recliner. “So I hear you’re not very happy about kids in the house,” I say.

“Yeah,” he agrees.

“Do you know who they are?”

“No.”

“This one,” I say waving Lily over when she comes in the door from school, “is Lily, your youngest granddaughter. The other kids are her friends.”

He looks at Lily and nods. Lily sits on the arm of her Grampa’s chair, then sort of slides onto his lap. He smiles. Lily and I smile, too.

Later, I explain to Lily a lot of noise bothers her Grampa; so when they’re at our house she and her friends need to play in a room where Grampa isn’t, be quieter than they might have to in someone else’s house, and maybe spend more time outside than in.

Within the next few days, Bill’s attitude changes completely. He starts teasing Lily and when she teases him back, he laughs out loud. And he loves it when she climbs onto his lap and snuggles.

As for my doubts about sharing the house, the energy of children laughing and playing under my nose is uplifting. Stephanie and I do have very different ways of doing things but we respect each other’s space and time. I will be here for Lily when her mom works weekends, or Lily is sick, or school and daycare are both closed for whatever reason. Stephanie will be here when and if I need help with Bill. And it thrills me beyond measure that Bill is able to connect with both of them and once again is fully aware he has family who love him.