A Balancing Act: Being a Caregiver for My Wife With MSby Leslie Pepper
When Mike Hoy, 50, graduated from Buffalo State College with a degree in graphic design in 1989, he expected his career path to go pretty predictably.
For the most part, it did. He began as a paste-up artist, then moved to production manager, and after a few years he was promoted to designer. But during about 25 of the 26 years he’s been married, Mike has had a second career—as a caregiver for his wife, Liz, 48.
In 1992, Mike and Liz had been married for almost a year. Liz started experiencing numbness and tingling in her legs that continued for a few months. She finally went for an MRI and a few days later a neurologist gave them the diagnosis: multiple sclerosis.
Neither Mike nor Liz was familiar with the disease. The couple went straight from the neurology appointment into a marathon meeting with Liz’s internist. They continued to get what felt like a day’s-long worth of questions answered.
Since then, Mike has advocated tirelessly on his wife’s behalf. At first his role was limited to making appointments and accompanying Liz to them. But in the two and a half decades since her diagnosis, Mike has grown into nurse, doctor, and complete supervisor.
There’s a lot to oversee. Liz sees at least four, sometimes five or six doctors a month, and a physical therapist twice a week. She takes an MS swim class once a week and exercises at home with a volunteer weekly. She’s seen countless specialists, tried dozens of different medications, and has had numerous procedures throughout the years.
Mike keeps a “cheat sheet” of everything digitally. When he makes appointments, speaks to doctors, or schedules Liz for a test or procedure, it goes on the computer or iPhone that automatically syncs to Liz’s phone, since she no longer has the manual dexterity to punch in the information herself. The digital record also includes Mike’s name, phone number, insurance information, primary doctor’s name, plus every drug Liz has been on, and every single procedure she’s had, with dates. “It was quite a process to set up originally but it’s worth it,” says Mike.
Although Liz has an aide, there’s only so much assistance she’ll allow. “She’s still young, so she wants to do things for herself,” Mike says. Since she’s in a wheelchair, Liz will accept minor help if she, for example, drops the television remote control or needs something from the refrigerator. But for the bulk of her needs, Mike is her number one assistant. “For the most part, she’s like, ‘Everybody stay away from me.'"
This may soon change, though, as they’re exploring the idea of an adult-care facility, which would allow Liz to have many services, including physical, occupational, and speech therapy, plus do some socializing, under one roof. “If she can find people to socialize with, that will fight off depression and will also make my life easier,” he says.
A day in the life
Mike’s day begins at about 5:00 a.m. After he gets himself ready, he gets Liz up, helps her to shower, dress, and eat breakfast. Their kids, Nicholas and Isabella, 17 and 15, learned to get themselves ready for school from a very early age. Sometimes Mike puts on Liz’s leg braces, other times he’ll leave that for the aide, who comes about a half hour after Mike leaves. By 7:40 a.m. he’s on a train bound for Manhattan from his home in Merrick, NY.
Liz’s aide leaves by 4:00 p.m. “So at 5:00 p.m., I’m out the door of my office,” he says. “By the time I get home, Liz has been sitting for a few hours, so I’m racing the clock.” The minute he gets there, he catheterizes her, changes her if necessary, then tries to figure out something for dinner, which usually involves the microwave.
“My kids were born into this, so it’s all they’ve ever known,” he says. “They help when I’m not around.” Nicholas, for example, will help transfer Liz to a couch or bed when she needs it. “Overall they are really good sports about it,” says Mike.
His day job, Mike says, has been very supportive. And although they’ve offered him managerial positions, Mike has always chosen to turn them down. “Taking a bigger position is just not feasible for me,” he says. “It would demand longer hours and more stress. I can’t afford that at any salary,” he says.
That’s not to say Mike doesn’t struggle. “I don’t think anyone wishes to be a full-time caretaker, and certainly I am at times grumpy,” he says. “I read a great line somewhere that said, ‘I promised to be here through good times and bad. I never promised to smile all the time doing it.’ I love my wife and we have supportive family, friends, and doctors. So bring it on until we find a cure.”
Mike’s 5 top tips for caregivers
1. Talk to every social worker you can. Find them through your local hospital or doctor’s office. They can help support you emotionally and help you feel like you’re not alone.
2. Look for financial grants and assistance. I found a grant that built a ramp for our house, and another society that offers free wheelchairs to those who need them.
3. Accept help. It’s taken me a while to do that, but it makes the load so much easier.
4. Get involved in decision-making. When you help come up with solutions, it makes you feel empowered.
5. Don't forget to laugh. Back when Liz started to have issues walking, her gait was a little off and she waddled. So, like a good supportive husband, I quacked!