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My life as a caregiver

How his partner’s stroke changed one man’s life
John, Carma and Rob Claydon

Two years ago, Rob Claydon and his wife Carma were living and working as expats in the UK and the Middle East. Three months after returning to Canada, Carma suffered a serious stroke at age 48. She spent six months in hospital and another six in a rehabilitation program. Then Carma returned home. Carma can walk short distances using a cane and a brace on her right foot. She uses a wheelchair outside the home. She can no longer use her right hand and her speech is limited. For Rob and their children, Alicia, Marcus and John, life would never be the same. But Rob jumped into his new role as caregiver. He talked to us about what life is like today, how he’s adapting and maintaining his own well-being. 

How did you prepare for Carma’s return home? 

There was a lot of stuff I hadn’t thought about before. Buying wheelchairs, figuring out how I was going to make the house safe for Carma. I installed rails in the shower and an extra banister to help her come down the stairs. I've had to teach her how to use the iPhone. She loves it now but texting is not a possibility. She can read things, she just can't respond. To be safe, I also purchased HomeAlert so if she falls she can push a button. 

What happens in a typical day? 

I wake up and make coffee and my son’s lunch. I’ll catch up on emails for a bit and then I grab a coffee mug, Carma's medication and her cellphone and I take that upstairs to her.

Carma needs a lot of sleep. I'm told that because your brain is working so hard in other areas, it's exhausting. Once I’ve showered, I make sure my son's ready for his day. Then I kiss Carma goodbye and go to work. (Rob has a full-time job in procurement for an engineering firm.)

I call Carma in the morning and again at noon to make sure she’s okay. When I get home, I throw whatever I’m cooking into the oven and give Carma a kiss. She is still a mom, so I like to ask John how his day was in front of her. 

He usually regales us on his latest high school adventure. There’s always something new and interesting in Grade 11. At dinner I tell her about my day. She’s always very interested. 

We watch some TV. After taking her medicine, Carma heads off to bed at 9 pm. She doesn't like me helping her anymore. I just follow behind, to make sure she doesn't fall. I have a second wheelchair up in the bedroom that she wheels herself into the bathroom with. While she gets ready, brushes her teeth and cleans her face, I get out her pyjamas and leave them on the bed. 

I put cream on her hands because she likes that. She uses her left hand so much it gets sore. The doctors told us that we can’t forget about the right side. It’s important to touch and move it. 

I turn on the TV for her and I give her a kiss and go back downstairs to wrap things up. When I head to bed I turn off the TV and we fall asleep.  I often worry at nights that she’ll have another stroke so I sleep lightly.  

What does your self-care look like at this point? 

It's not good. When you're husband and wife, you split the duties. Now, it's all me. 

I try to stay healthy but when I get home from work, before I've got my shoes off, I've got to start dinner. I've got to think about dinner before that. I've got to grocery shop. I've got to consider Carma's health. Laundry is constant. Bills. All those things. 

But the most important thing is quality of life for Carma. The guilt and the desire to make sure her life is of quality now is something I'm struggling with. How do I help my wife live a full life now that she can't speak or walk very far?

You mentioned guilt. What did you mean by that?   

Guilt around the fact that if I choose to do something for myself, like go to a hockey game with a friend, I'm leaving my permanently disabled wife at home while I go out and have a good time. She's been sitting there all day. There’s guilt that I should really go do something with Carma. 

Self-care is a real struggle for caregivers. I know I need to do stuff for myself but what about my spouse that I'm giving care to? 

What does your support system look like? 

It tends to be our family and a few of Carma's friends. I did have home visitation for the first months after Carma came home, while I was at work. That lasted for about two months. Then, I realized that she was sending them home. She'll let her mom take her out every Wednesday. I’d like to get friends and family to take her out, but she pushes back. 

What would help you the most right now? 

The ability to communicate better. That would change the game. Without speech and proper communication it's a guessing game for me about what Carma needs and what she wants. 

How do you communicate right now? 

 When you love someone, you share a connection. I think that helps. We usually begin with a game of contextual charades. I start with family. Kids. If I have a sense of the topic she wants to talk about, I might say, "Vacation?" 

And she'll go, "Yes!" 

And then I'll ask, "Do you want to go on vacation?" 

"Yes!" 

It goes like that. I just work through different contextual conversations, trying to hit on a keyword that she's interested in. Sometimes it doesn’t work. 

How do you deal with those moments? 

After the early days of being really frustrated and ending up in tears, we've learned to laugh it off. It's the biggest skill we learned. 

One day I said to her after half an hour of exhaustion, trying to understand what she wanted, what she was getting at. I said, "Carma, this is crazy." She started singing. 

Crazy, crazy for feeling...

She burst into the old Patsy Cline song without missing a beat. She can sing words in a song that she can't speak. I asked the doctor about it. There is a theory that the singing skill is located in a different part of the brain that's been undamaged for Carma. 

Is that encouraging? 

It is. She's all there. All her memories, experiences, emotions are still there. She just can't get them out. It's intensely frustrating for her. 

How do you look after your emotional needs? 

As a caregiver, your emotions have to remain under control. If your loved one sees that you're struggling, it makes them feel terrible. She wants to be involved and give motherly advice. 
In terms of my emotions, I just miss my wife. All those things you never think will go, all of a sudden they're gone. And you're in a different scenario for the rest of your life. 

Has your role as a parent changed? 

Marcus and Alicia are older and are out of the house. Carma would help John with homework for 1 ½ hours every night. That's gone. We entered the school year and I was the guy. I try to remember how Carma would approach homework. I did reach out to his teachers as well. I thought it was very important for them to understand what John was going through. 

Have you learned anything new about yourself through this experience? 

I think I eased into a caregiver role pretty well. It was tough figuring certain things out. But if you love someone, you just do it. 

In some things I've got a lot more patience. In other things I've got less patience. When wheelchair access doors in malls and shops and restaurants don't open, that's frustrating. I wouldn’t have thought about that before. Now it's your door; it has to work.

That sort of thing bothers me. But Carma and I laugh about it. She’ll sing the Jeopardy theme song as we wait for the door to open. You just learn to adapt. 

You chose to fundraise for Heart & Stroke this year. How did that go? 

Before her stroke, Carma was a Heart & Stroke canvasser. She’d go out in the cold weather, knocking on doors for donations. When Heart & Stroke phoned her this year, I told them that she couldn't volunteer because of her stroke, but to send me the kit. I would canvass for both of us. 

It was my first time and I didn't know what to expect. I emailed a detailed story of Carma’s experience to people we know. Their response took me by surprise. People from all over the world — friends, family, colleagues — have been so incredibly generous and supportive. They’ve helped us raise more than $6,000 for a cause that means so much to our family.

What advice you would give to other caregivers? 

Your loved one is still here, which is a blessing. You have to learn to laugh about certain things that can't get done or that you just can't figure out. 

I’d also say, take your time. Ask as many questions of the professionals as possible. Expect the unexpected. Be patient. Take advice — but not all advice. 

Use the facilities and any courses that are available to you. And lean on your support system because you can't go it alone. 

How is Carma’s recovery going today? 

Better. She's able to walk very short distances with a cane. She's left hand dominant now. 

She’s very independent. She wants to live her best life she can with her stroke situation.