For spousal caregivers, the stress can exact brutal toll

In the years before her husband, Denny, slipped into the throes of Alzheimer’s disease, the 11th day of each month held special meaning for Michele McGarraugh.

Without fail, Denny marked the date by presenting her with a robust bouquet of flowers. Eleven, after all, was his lucky number, and it was on the 11th of June in 1977 that they exchanged wedding vows.

But now, another date – Sept. 29, 2009 – is engraved on Michele’s mind. That’s when Denny, 72, first approached her with a quizzical look on his face and uttered the words, “Who are you?”

“I literally could not breathe for a few seconds,” she recalls. “I knew that day was coming, but I wasn’t ready for it. My throat tightened up, and I just cried.”

It was a chilling sign of things to come for Michele, who would see her marriage drastically transformed as she took on the duties of spousal caregiver.

During happier times, the McGarraughs were equal and active partners in every sense of the word. They camped, backpacked and traveled together. They even worked together, running a business out of their Alameda, Calif., home.

But with Denny’s faculties progressively fading, the dynamics of their relationship are very different.

Every day, Michele, 58, bathes Denny, dresses him, shaves him and prepares his meals. She cleans up after his nightly bouts of incontinence and tries to calm her husband by reading to him.

She rarely lets him out of her sight, fearing that he’ll fall and hit his head, or wander off.

It’s a grueling and disheartening existence, but Michele vowed to be there “in sickness and in health,” and she meant it.

Does it even feel like a marriage anymore? Yes, she insists, just not quite in the same way.

“I used to love it when I’d be in the kitchen cooking, and Denny would sneak up from behind, wrap his arms around me and kiss me on the back of the neck,” she says. “I think about moments like that, and there’s kind of a yearning … but then I snap out of it.”

Caring for a sick or disabled relative exacts a brutal toll – physical, emotional, financial – on any involved family member.

But for spousal caregivers, the challenges and traumas are even greater, says Linda Fodrini-Johnson, executive director of Eldercare Services in Walnut Creek, Calif.

“It’s the long goodbye. You’re slowly losing the person you’ve become accustomed to sharing your life with,” she says.

“And now that person can no longer give you what you want or need. You have more loss. Your heart is more broken.”

She points out that spousal caregivers typically take on greater burdens than they can reasonably handle and wait longer to ask for outside help, because they feel like it would “betray the relationship.”

And too often they pay a high price in terms of their own health. Studies have shown that spousal caregivers are prone to loneliness, depression and insomnia.

The American Medical Association reports that elderly caregiving spouses have a 63 percent higher chance of dying than people the same age who aren’t caring for spouses.

“It isn’t all that uncommon,” says Fodrini-Johnson, “for the caregiver to precede his or her spouse to the grave.”

Complicating matters is the fact that spousal caregivers find themselves presiding over the gradual disintegration of the most vital relationship of their lives. They dearly miss the healthy, vibrant version of their mate.

And because of the constant demands on their time, they lose many of the things that were part of the relationship: dinners with friends and family, holiday events, vacations, birthday parties, graduations, the birth of a grandchild.

“I think, in some ways, the human organism is better equipped to handle a death,” says Jan Cecil, a Berkeley, Calif., woman whose husband, John, 67, is afflicted with a form of dementia.

“After a death, you grieve and eventually get a sense of closure,” she says. “But this goes on and on. The waves keep coming at you.”

Cecil, 66, who has been married 42 years, placed her husband in an assisted living facility in 2007.

“On the days when I really miss him,” she says, “I go into the closet and put on one of his flannel shirts.”

Paul Barrett of Orinda, Calif., can relate.

After his wife, Diana, 63, was diagnosed with Alzheimer’s at the young age of 56, he tended to her on his own for several years as her condition rapidly worsened. Finally, he set aside his feelings of guilt and placed her in an assisted living facility.

“I couldn’t do it anymore,” he says. “I was just struggling to keep up with life.”

Diana since has lost her ability to speak (she only makes incoherent mumbles), but Paul visits her almost daily. She typically greets him with a smile and a hug while clutching a baby doll.

Paul typically shares breakfast or lunch with Diana and takes her for a walk before returning her to her room. There, on the dresser, sits a framed photo of the couple taken in 2009 that commemorates their 36th anniversary.

The caption reads: “To love is to receive a glimpse of Heaven.”

Paul finds himself coping with what he calls a “lonely marriage.”

“I miss being able to talk to my soul mate about the weather, the news, how the day is going … about anything,” he says.

“Diana was always very verbal, and I would sometimes tease her about talking too darn much. Now I think about what I would give to have that back.”

Among the many challenges spousal caregivers often confront is a change in traditional roles. The wife, for example, might find herself having to pay the bills or oversee household and yard maintenance. Men might have to learn to cook and clean.

“Little by little, the things that your partner did migrate onto your list of things to do,” says Dena Heath, a 62-year-old Walnut Creek, Calif., resident who tends to her husband, Bill, who suffers from a rare life-threatening bone marrow disorder called primary amyloidosis.

“ … There is no way to avoid it. Your job just gets bigger and bigger. And little by little, your personal needs are replaced by those of a sick spouse.”

Heath admits that she and Bill don’t celebrate their anniversary anymore, but, in some ways, she feels “more married than ever.”

“A lot of marriage is about the easy part – the ‘what should we have for dinner tonight?’ The daily routines. The chitchat about your day,” she says.

“(This) has been a journey filled with many blessings. I have a renewed appreciation for friends and family … and a new understanding of what really is important in life on a day-to-day basis.”

And her husband Bill, 68, has a renewed appreciation for her.

“I’d be dead without her,” he says. “That’s no joke.”

Still, there is a gulf in the relationship. Many spousal caregivers yearn for the physical intimacy they once shared with their partners.

Michele McGarraugh admits that, though she still hugs and kisses Denny every day, she hasn’t had sexual relations with her husband in nearly four years.

“Part of it is because of me,” she says. “It sadly got to the point where it was never successful, so I didn’t encourage it. Not even an overture.”

That said, it probably should come as no surprise that spousal caregivers – especially those tending to partners with cognitive diseases – sometimes look elsewhere to fill the intimacy void.

Cecil admits that the thought of being with another man has occasionally crossed her mind.

“I think all your rigid moral codes simply disappear in a situation like this,” she says.

And, indeed, she did recently go on a hiking date with a man, who wanted to pursue another get-together. Cecil, however, didn’t return his call.

“I guess I just wasn’t ready,” she says.