Special Caregiver Feature: Walking the Line Between Caregiver and Life Partner

Two couples affected by Becker muscular dystrophy discuss the challenges and joys of making a relationship work when one partner has a chronic disease

After nine years of courtship, my partner Richard and I are discussing The Future. Children, marriage and home ownership are now notching out deeper spaces in our daily dialogue.

Like many couples, we’re both scared of The Future. We’re concerned we won’t be fully equipped for what may come — those ripples that may make life a little more difficult. We’ve already experienced hardships that we’ve routed by the skin of our teeth. Despite the courage we possess individually and as a unit, though, we still fear that which we can’t predict.

In our planning for The Future, we also find ourselves preparing for the inevitable — traces of which already contour our daily lives.

The fact is Richard, 28, has Becker muscular dystrophy (BMD), a slowly progressing, degenerative disease that affects the strength of his muscles. While he can walk, lift objects and climb stairs without assistance — albeit at a delayed pace — those abilities will continue to gradually fade and, because BMD is unpredictable, neither he nor I exactly know how that’ll look in The Future. So we try to plan for all possible scenarios we can conjure.

The problem with planning, though, is that we can’t plan at all. Sure, we’re able to determine some of the accommodations we’ll need, like a single-level home or ramps. But, in spite of our need to control The Future, we can’t.

As someone in love with a man with BMD, I sometimes worry I’ll fail as Richard’s cornerstone now and in The Future.

Time is on your side

You need to be patient with time,” advises Sheila C. Moeschen, a writer, scholar and director of a support program for women caregivers called HerSelf First. Moeschen spoke at MDA’s 2013 Becker Muscular Dystrophy Conference in August.

There are many things you can do to boost your well-being, promote self-care and ensure you are at your best as a caregiver, Moeschen says. The essential keys are:

• requesting and accepting help;
• embracing the small acts that provide self-uplifts; and
• always following through.

“You must have other outlets other than your children, the disease, managing the household. This is true for anybody no matter the situation, but especially true for caregivers,” she says.

“No excuses. No, ‘I’ll get to me later.’ You deserve to be gotten to now.”

Good advice. But up until I attended the MDA Becker MD Conference, I had no example of how a relationship like ours would unfold.

While every rapport is one of grace and love, when you’re dating someone with a disability, there’s another level of complexity that requires tailored sensitivity. No amount of researching Becker muscular dystrophy could gird me for the emotions Richard was — and still is — feeling, and the way he’d choose to express them. Nor could I predict my emotions, and responses to situations yet unseen. We’ve struggled throughout the years because we’re both learning without precedent.

Wanting some cue on how to be an exceeding partner while remaining attuned to Richard’s needs, I turned the question to others at the MDA Becker MD Conference for their insights.

Meet the Damianis

“There’s an infinite variety of situations out there where people have to juggle and balance. It’s not going to be perfectly smooth sailing,” advises Mario Damiani, a 36-year-old attorney with BMD who lives in Silver Spring, Md., with his geophysicist wife, Theresa, 32.

“You still have to have fun and a great time. You should plan the things you can do and be realistic.”

Much like Richard and I, the Damianis are planning to start a family. Theresa is forthright and genuine in her advice as she describes the intricacies of her role as a wife and a caregiver. It’s apparent — her experience of being committed to someone with BMD is far more involved than mine, as Mario has used a power wheelchair for the last eight years.

Every night, Theresa helps Mario get ready for bed, and on weekends she prepares him for the start of the day. A paid personal assistant helps him get ready for work during the week (this includes dressing, washing and personal grooming). Theresa also assists him with physically difficult tasks or when areas aren’t accessible to his wheelchair, and performs aqua therapy with him once a week in a heated pool. And she keeps up with disability friendly renovations around their home as much as possible.

It’s exhausting and sometimes frustrating when communication breaks down or when Mario is experiencing pain, but the triumphs — from seeing Mario smile because assisted stretching eased discomfort or seeing the encouraging results of aqua therapy — ease those burdens.

“Early on in our relationship, we agreed that Mario would not hesitate to tell me what he needed and that I would then tell him what I could provide,” Theresa says.

“If I can't provide him all of what he needs, we brainstorm a way to do make up the difference.”

Theresa says that, while balance is sometimes “tough” to achieve, experiencing life as it comes and carving out “me time” — be it for solo accomplishments or spending time with friends — are important aspects to building a strong foundation with any partner, even if they do not have a disability.

A couple has to envision the life they want together first — how they will fit together in a healthy way — and “then consider what the disability means to that life you’ve envisioned together.”

“There is also joy at being able to help my husband feel better and enable him to live a fulfilling life together with me,” she says.

Equalizing her professional career and her role as caregiver often involves taking one night a week to herself to reconnect with her hobbies, like reading, gardening or bicycling. She also relaxes her body and mind through Transcendental Meditation, and leans on Mario — whom she describes as “an excellent listener” and “very emotionally well-adjusted” — for inner strength.

“He helps me take care of myself,” she says. “As a wife, I try to keep fun and romance in our relationship, as does Mario.

“I take care of him the same way I’ve always expected I’d support the love of my life.”

Meet the Hutchinsons

Cynthia Hutchinson and her husband, Ron, traveled to the conference in Baltimore from the suburbs of Grand Rapids, Mich. Cynthia, in her long earth-toned print dress, is vivacious, with an ample smile and ebullient laugh. Ron, who has BMD, is more laid-back, decked out in a Hawaiian shirt and broken-in blue jeans. The couple has been together for 26 years.

Life is unpredictable, Cynthia says. Instead, you can only love each other unconditionally — and make sure your well-being is secure.

“You can’t be strong for everybody else if you’re not taking care of yourself,” Cynthia, 54, says.

Ron, 52, didn’t know he had BMD until 1990, when he was 30 years old — the same year he married Cynthia and she became pregnant with their only son, Zachary, now 22 (Cynthia has two older sons, Nathan, 35, and Jesse, 30, from a previous marriage).

Before his diagnosis, Cynthia noticed Ron had trouble walking up stairs and had larger-than-average calves — a common characteristic of BMD — but when she would inquire about it, Ron would say “I don’t know. I always have.” He then began falling a great deal more “for no reason” and climbing the stairs with exceedingly more difficulty.

At this point, they visited the doctor to find out what was wrong. A couple of months of medical testing and a muscle biopsy later, the couple received their answer.

“It was like my whole world changed,” says Cynthia. “There wasn’t a lot of information out there about Becker and the Internet wasn’t something that people used at that time. We had a lot of questions, and we didn’t get a lot of answers at that point.”

Library books and information provided by MDA were her sources of education on the disease. And what she found out — the progressive weakness, the possible use of a wheelchair, and increased risk of heart-related death — was an emotional jolt.

Cynthia admits that there also was a weight of sadness that went beyond the disease. As a single mother, she had been “the main line of support” for her children, assuming both the breadwinner and caretaker roles. With her marriage to Ron, a “very nurturing, loving person,” she had hoped that would change, at least for a couple of years. She wanted to focus her energy on being a stay-at-home mom for a while.

But, knowing how BMD progresses, she knew it wouldn’t be a possibility. Ron, who uses a cane for better mobility, stopped working five years ago because of his disability. He now stays at home, attending to house maintenance needs.

“I had to rethink my expectations of our marriage, of our life together, what was going to happen, the choices we’d have to make,” recalls Cynthia, who works third-shift at an answering service. “I didn’t blame him or hold him responsible in any way. It was just re-adjusting what my life was going to be.”

As part of that adaptation, the pair attended couples therapy on and off for a few years, in addition to Cynthia’s own therapy. While Ron struggled with the effects of BMD on his body — at one point almost threatening the stability of their marriage — Cynthia says she “really had to learn” how to nurture herself — to take those moments of self-care and satisfy her own interests so she can “keep on being everyone else’s strength.”

By comforting herself, Cynthia is able to act as a better advocate for Ron, giving him the relief he needs (even when unspoken) or being assertive when he avoids speaking up for himself.

Part of being that advocate, though, is also listening to your partner, ensuring the assistance you’re offering is actually helping. It’s a philosophy she also applies to caregiving for her son Jesse, who became a paraplegic due to multiple myeloma, a rare form of blood cancer, with which he was diagnosed three years ago.

“It took [Ron] a really long time to accept what muscular dystrophy was doing to him,” Cynthia relates. “We learned to do adaptive things. We talked about them, and we resolved them together.

“You have to figure out what you want to do, and that’s the thing you need to do.”