by Tilda Shalof
“Did you ever get a break?”
“Only when I put on repetitive children’s TV shows or a movie with a familiar plot. It soothed him momentarily, but then he’d panic and call out for me, not realizing I was in the next room or the kitchen. He kept launching into long stories. The children took the photos off the piano because that would get him started. He teased them inappropriately. He could no longer play the card games we loved. When we went out he’d make rude comments about someone’s appearance and people looked at me like, ‘Can’t you control him?,’ so we stopped socializing to avoid embarrassment. Our world shrank. I became housebound, a prisoner in my own home.
“Then he started using the wastebasket in our bedroom as a toilet. Each time he did that I’d want to scream. I’d have to go into another room to collect myself but he’d follow me there.”
Georgina shifts in her chair, but I don’t move a muscle. I’m mainlining her story, totally riveted by her courage in telling it so honestly.
“It’S NOT HIM, IT’S THE DISEASE, I kept telling myself. Here was his warm body right beside me, but he was gone. It wasn’t him. Sex? Forget that. He was my child. He couldn’t be a father. The kids referred to him as ‘this dad’ or the ‘real dad,’ or the ‘new dad’ or the ‘old dad.’ I was a single mom, on my own …”
For Georgina, one of the hardest things was her husband’s “importuning.” I didn’t think I knew the meaning of that word, but when she describes the behaviour, I realize I do.
“He looked to me for constant attention. He wanted me to entertain him. He needed endless reassurance and encouragement. He’d call out for me, ask me questions, and follow me around. He would stand outside the bathroom, asking, ‘When are you coming out? When are you coming out?’ So many times I felt I couldn’t take it anymore, but I did, for six long years.
“One advantage of my situation was that I never had to wonder what to do each day.”
(That’s a joke you can make only if you’ve been a caregiver yourself.)
Georgina learned to take help whenever it was offered, even from strangers, until her husband became wary of unfamiliar people in the house.
“ ‘Who’s here? They’re stealing the TV,’ he’d say over and over. He was even suspicious of his own reflection in the mirror. He thought someone was spying on him.
“I felt so alone, until one day, my sister, who is a nurse, came for a visit. After two days watching me she said, ‘I don’t know how you’ve managed this far.”‘
“I’m also a nurse who’s wondering the same thing,” I say.
“ ‘It’s time, Georgina,’ my sister said. ‘He’s too much for you. You need to put him in a nursing home.’ What a relief to hear her say it. It’s only when others get a glimpse into your world that they finally get what you’re going through. I had enormous guilt over that decision and tortured myself with questions. Could I have been a better caregiver? Did I do enough? Could I have kept him at home longer? I kept thinking, I should be able to manage this myself.
“The standard is higher for family than professionals. The expectation is that because you love him, you can cope with anything – annoying behaviours, aggressiveness, incontinence, bowel movements. I would look at him and all I could see was someone I had to take care of. I was his babysitter. No one saw that my marriage was over. His body was there, but I was alone. He was gone. I began to resent – even hate – him. I couldn’t feel the love I once had for him. Without his income or mine anymore, the financial stress was enormous. One thing that helped was the day program for him and a spousal support group for me. I had errands to do but I needed the support group more. We talked about everything and everyone understood because they were going through the same thing. We could complain about no more sex or confess our murderous thoughts about having to clean them up or that we wished it were over. It’s not that we wanted the person to die, only for the suffering to end.”
Now Georgina comes to a part of her story that is difficult to tell. She tenses up and pulls back. Hesitating. I can see her thinking whether to divulge this part or not. She looks at me for a moment, trying to judge if it is safe for her to say it. She goes for it.
“There was one day I’ll never forget. Allan was calling out for me and following me around the house, and suddenly, I lost control of myself. I grabbed his shoulders, slammed him up against a wall, and yelled, ‘Listen to me! Would you stop this? I can’t take it anymore.’ We had always been gentle and loving toward each other. I was appalled at what I was capable of. It was abuse, plain and simple, but we all have our limits. We have to be able to say, ‘I need help.’ ”
Georgina wants to support other family caregivers, so when I ask her what helps, she is ready with her response.
“First of all, make sure you see the caregiver, not just the patient. Remember to ask, ‘How are you doing?’ and then sit and listen. Don’t ever say, ‘What can I do to help?’ It’s vague and the person is too overwhelmed to think of something. They’ll always say, ‘No thanks,’ or ‘I’m fine,’ but don’t believe them. Nothing could be further from the truth. They are using every bit of their energy to simply keep it together. They can’t come up with something to suggest. Instead, say ‘I’ll look after this,’ or ‘I’ll do this.’ Just tell me what you’re going to do and do it. Or, show up and figure out what’s needed. Weed the garden, walk the dog, bring a meal. Do what needs doing.”
There’s more.
“Being careful with words is important. Your words can heal or harm. People say such thoughtless things. You’re an open wound, so you take everything to heart. When I finally took my husband to a nursing home, there was a father with a son who had multiple sclerosis. The nurse said to me, ‘You have no idea how hard it is for him,’ totally discounting my situation and how hard it was for me. You never know what another person is facing.”
She advises caregivers to find hope in realistic, achievable goals, because they always feel they’re not doing enough and should be doing more. “Tell them they are doing enough. Sometimes all I could manage was to keep Allan safe and clean. Remind caregivers that they have rights – the right not to get burnt out, to take care of themselves, to not be left financially destitute. I’ll never forget the family who spent thousands of dollars to retrofit their home and put in wheelchair ramps, safety bars, and an electronic lift. They brought their father home and he died a day later. Families have the right not to become bankrupt. They have a right to breaks from caregiving to rest and renew themselves. Many caregivers do too much, to the detriment of their health. Caregivers need to learn practical strategies for coping.”
On a larger scale, there’s a need for more day programs, especially for children and young adults with autism spectrum disorder or developmental delays, and group homes for young adults with developmental disabilities or mental illness. Georgina feels strongly that these places must be aesthetically pleasing, not old or depressing, and filled with art, music, and beautiful things. The people who work there must have a sense of purpose and pride.
“We need to check in with caregivers and be aware of their capacities and needs. Sometimes, it’s not the patient who is suffering the most.”
You do what you gotta do. It’s a phrase that echoes in my mind after I say goodbye to Georgina and walk back to my hotel. Yes, it’s true. However, you have a choice how you do it, and in my experience, the best caregivers do it with loving kindness to themselves first, so that they then are able to offer the same to the ones in their care.
When Bonnie had told me about the high incidence of young caregivers, I wondered about the effect upon children and teenagers of having such heavy and mature responsibilities. “How does it affect them in the long run?” I ask her. “Does it make them become more compassionate human beings or traumatize them for life?”
“It’s not the age of the caregiver, or the form that the caregiving takes,” she said. “It is what the individual experiences and how it affects that person.”
> To speak directly with child caregivers, Bonnie suggests I call Denise Clayton, the mother in a family whose child, Stephanie, was born with an omphalocele, a condition where her intestines were located outside her body. Now she’s twelve, and, after many surgeries, Stephanie continues to have numerous medical problems and nutritional issues. When Denise and I first talk on the phone, I’m surprised to hear her mention the benefits of their situation first. “It’s made our family stronger. It’s given the children confidence and a sense of accomplishment.” She says she’d like to meet with me but apologizes that she can’t. Between caring for Stephanie, informing her teachers about her illness, making frequent runs to the hospital, and trying to keep life somewhat normal for Sydney, aged fourteen, and Danielle, aged ten, she has no spare time. Denise suggests I email my questions to her daughters. “They’ll be thrilled you want to hear from them. It’s usually Stephanie who gets all the attention.”
So, I start up a correspondence with Sydney and Danielle Clayton, who are very pleased to respond to my inquiries.
WHAT’S IT LIKE BEING A CAREGIVER TO YOUR SISTER?
SYDNEY: Good evening. My name is Sydney Anna Clayton. As you may have heard, I am Stephanie’s older sister. What’s it like being her caregiver? Stressful! But no matter how tiring, difficult, or frustrating it may be at times – well, most of the time – there’s not a better feeling in the world to finally see her smiling face when she gets a moment of relief from her suffering.
DANIELLE: Hi, I’m Danielle. You never know if she is going to be happy or mad or sensitive or grumpy. Maybe start out normal then five minutes later she freaks out and you can’t go near her.
WHAT ARE SOME OF THE THINGS YOU DO TO HELP CARE FOR YOUR SISTER?
SYDNEY: In my experience, the best way to help is to stay away, but be around when she needs cheering up. As the oldest, I have always been the one to protect her, clown around with her, cheer her up, inspire her, be a role model, teach her how to be a regular kid. I helped her work on her “swag factor” and be the person I knew she was. Fortunately, I never had to take care of her medically, but knowing how difficult it is just being her support system, I can’t imagine how stressful it would be to take care of her medical needs as well.
DANIELLE: If she’s tired I watch Movies with her if she wants to play I play with her if she got admitted to hospital I will beg to visit her and if she is also admitted to hospital I bring her clothes and toys called American girls I bring her some.
ARE THERE ANY GOOD OR FUN PARTS ABOUT HAVING A SISTER WHO NEEDS YOUR HELP?
SYDNEY: I would like to make it clear that having a relative that’s so critically ill, is no situation I would wish upon passing over to another person. It is not fun or enjoyable. However, if I were to say that it has never changed my personal life or my family for the better, I would be lying. It’s forced me to grow up fast. At age two, instead of thinking what kind of cookie I wanted for dessert, I was learning how to pronounce “omphalocele.” You can imagine how difficult it was trying to understand this complicated word when I was still trying to figure out why the swings moved the way they did. Being an older sister to a sick child has made me more patient, calm, courageous, and less selfish. So there are positive aspects.
DANIELLE: Well some fun things are that we are not ever bored cause you have a job to do. You have more fun cause your always busy and you have many more opportunities.
WHAT ARE THE HARD PARTS?
SYDNEY: It’s always difficult. There is never a break. Stephanie has pain that NEVER goes away and must always be dealt with. Steph has been through a lot and it is difficult to keep her cool at times. You can see in her eyes how hard it is for her. Having a sister like Steph has never been easy. It’s not easy for even the smartest of doctors to understand her. There is nothing we can do and nowhere that we can go that is not affected by Stephanie’s health. There is no minute of this life that I do not think about Steph. It is difficult not knowing what the future holds. With Steph it is not possible to go day by day. It’s more of an hourly thing. Everything has to be planned by the second and organized so tediously to avoid mess-ups or accidents or danger.
DANIELLE: Well, one of my fears are when she is really sick in the hospital or when she has been naughty and got grounded she gets mad easily and scares everyone in the house.
ARE THERE TIMES WHEN YOU DON’T WANT TO BE A CAREGIVER?
SYDNEY: I feel this often. There are times I wish I could be a kid with no responsibilities, no worries, live a carefree life. I try to cherish the good times and make them last because you never know when it could all come to an end.
DANIELLE: Well, sometimes. Let’s say you’re playing a game and she has to be a certain colour, so I give in because she’s sick. If she gets mad, I get scared something will happen.
It’s not about what they do, but about how they are affected.
THE WAY A HUG MATTERS
JUST BEFORE I LEFT OTTAWA, Bonnie told me about another appointment she’d set up for me. I’d had enough by then and just wanted to get home, but she was insistent.
“There are some situations that are beyond what family caregiving can do. Even those who want to do it all simply can’t, and they require professional nursing in the home.”
She handed me a piece of paper with an address of a client I was to meet at his home, early the next morning. I was tired and just wanted to be on my way. I considered cancelling, but it was conveniently located along my drive back to Toronto and since Bonnie had gone to the trouble to it set up, I felt guilty not going through with it.
It’s only now, three weeks later, that I am able to put into words what I experienced there.
I pulled into a long driveway where two pink tricycles were parked alongside an SUV. Bonnie told me only that I’d be meeting the client Gaétan Tremblay, that his wife was a high-powered corporate lawyer named Veronique, and that he had identical twin five-year-old girls. A stunning woman in a leather bomber jacket and tall leather boots, carrying a bulging briefcase, emerged from the house, and I assumed she was Veronique. In the midst of talking on the phone, she stopped to call out to me. “Hi! You must be the nurse here to see Gaétan. Go on in. The door is open. He’s expecting you.” She waved to me as she backed out on to the street. I pulled into her spot.
It was 7:30 in the morning, but Nurse Rhonda Jacquard was already there and busy with Gaétan’s nursing care in the bedroom. She came out to introduce herself and tell me a little bit about her client. A year and a half ago, Gaétan was in a freak accident that left him paralyzed from the neck down. He’s now a quadriplegic and requires six hours of nursing care a day – three in the morning and three in the evening – 365 days a year; not a day can be missed.
Gaétan was still in bed, she said, and she’d call out to me to come in after a few minutes more, when they’d finished his morning care and bowel routine.
He must have autonomic dysfunction, I thought – most quads and some paras do. When the central nervous system doesn’t function properly, the muscles are affected, including those of the gastrointestinal tract. They slow down and don’t move as effectively. The person cannot evacuate stool and so, every day, it must be eased out with an enema or extracted manually.
Rhonda called me to come in. The bedroom was dim; the shades were drawn. Gaétan lay flat on his back and lifted his head to greet me and say, “hey” when I walked in. I introduced myself and he invited me to sit down, but I didn’t know where, as Rhonda was using the only chair in the room to place her supplies upon. Gaétan turned his head and nodded over at the opposite side of the bed, his wife’s side. I wanted to respect his personal space, but there was nowhere else to sit and I didn’t want to talk to him standing up, looking down at him lying down, so I perched on the edge of the king-sized bed in Veronique’s space, still warm from her recently slumbering body.
Deftly, Rhonda turned Gaétan on his side to face me so that he and I could talk face-to-face. That position also gave her better ac
cess to attend to the pressure sore on his backside. That way, she could get a good look at it, clean it, and change the dressing.
Rhonda put a pillow behind Gaétan’s upper back for support and placed his arms down along his sides, and his hands and fingers in their natural positions. On his left pinky finger there was a plain, unpolished metal ring, the sign of a Canadian engineer. Upon graduation, they are allowed to wear this ring, which they receive in a secret ceremony. It’s made from iron extracted from a bridge that collapsed due to a fatal engineering flaw. It’s a reminder of human fallibility and the responsibility for people’s lives that engineers bear.
Gaétan said that he was agreeable to this interview, but on the condition that VON will benefit from book sales. Once I had assured him that was indeed the case, we were ready to begin.
Opening my notebook and clicking my pen like an on-the-scene news reporter, moving in for the big scoop, I blurted out, “So, what happened?” Imperceptibly, he flinched. Perhaps my inexplicable nervousness was what made me so overeager. Not a good start. In an attempt to smother that tactless question, I rushed to cover it with an even more insensitive one. “Was it a diving accident?” Gaétan turned his head away from me. He looked up at the ceiling. It seemed like the interview was over.
“Okay. Call it a ‘diving accident,’ ” he said, his teeth clenched.
Diving accident. I get it. The term implies recklessness. It begs the question of how an educated, intelligent person could be so careless – no, stupid – as to dive into shallow water.
I apologize. Something eases between us. He smiles at me, all is forgiven. He has a gorgeous smile and is an incredibly attractive man. Now I can see the hot, studly guy I saw in a framed photograph I was admiring on the coffee table in the living room as I was snooping around, waiting to come in to his room. In the picture, he had a guitar in one arm and the other was slung around the graceful shoulders of the gorgeous Veronique, the couple looking so happy and in love.
