Rebecca Graulich remembers the day last December when she volunteered to help out at a day-long meeting for caregivers in the Sacramento Calif. area. Although she is a caregiver to her parents, she was there as a working professional. She is a manager at a drop-off center that exists to help those who give care to people with dementia. Graulich recalls it was something of a hectic day and she had dashed out the front door that morning without putting her wedding ring on.
During one of the breaks at the all-day meeting, an attendee approached her.
They talked for a bit and he explained that his reason for coming to the conference was that his wife of many years suffered from dementia. He provided good care for his wife, he told Graulich, and while he may not have ever imagined himself in this role, here he was doing things like changing her diapers.
Perhaps it was the emotionalism of the day, perhaps he felt secure to be in a room full of people who understood and shared his life. He blurted out: "I'm just so lonely." He told Graulich, "It's so hard to be married to someone who no longer recognizes you." It's also hard to know what the right thing is to do, the man told her. And then he asked, would she, Rebecca, like to have dinner together sometime?
"I realized I didn't have my wedding band on," Graulich recalls, "and he didn't know that I was married."
But wait a sec. Wasn't he also married?
Therein lies the crux of the issue. When your spouse no longer knows who you are, should you still be held to wedding vows of "til death do us part?" Or does death sometimes come in stages, draining away the person you married drop by precious drop? And of course the big one: If the person you married is no longer "there," should you still be?
It's an issue that Graulich, who works as the marketing and development coordinator for the Respite Club, a group that provides services and relief to caregivers, has given lots of thought to.
Graulich was so moved by the man's pain and raw need for someone to talk to over dinner, that she -- aided by her husband of 27 years who is a lawyer -- developed a Compassion Contract; they've both signed it. It says that should she develop dementia and no longer be able to meet his needs, she wants her husband to to be able to find someone else who will. She wants this, as the contract notes, because of her love for him. Her husband, David, signed an identical contract, giving Rebecca permission to seek comfort in another's company should he develop dementia and "no longer be able to meet her physical and emotional needs."
It's not permission to have an affair, Graulich told The Huffington Post. It's giving someone you love deeply the permission to not feel guilty about having his or her needs met. "It should be what you want for someone you love," she said.
She got schooled though in how a Compassion Contract may not be for everyone. An oped she wrote that appeared in the Sacramento Bee was not met with universal favor. One online commenter renamed her idea "compassionate 'fucking-licenses'
for the dementia affiliated."
That's just so not the case, Graulich says.
The story that Graulich shared about the lonely man at the conference who asked her to dinner is a story that could likely be told in every memory loss wing of every assisted living home, she said. It is not uncommon for the spouses of patients to meet in support groups and sometimes those friendships are extended to coffee, dinner, a movie, help shoveling the snow -- or more. The common ground of understanding what it's like to take care of someone with dementia is a strong bond.
The pity, Graulich says, is that healthy spouses generally feel guilt over the idea of moving on with their lives. We live in a Judeo-Christian society, she says, that teaches us that infidelity is wrong. "So we heap guilt on people who cheat on their spouse." Adult children and long-time friends are often the first ones to pass judgment, Graulich says. "But the person with dementia is not the same person you married and agreed to spend your life with," Graulich says.
She recalls the woman who faithfully cared for her husband, whose memory had been slipping for years. She managed his care at home and his condition slowly worsened. Then came one weekend when he seemed to come back, act like his old self. They had a romantic Sunday morning cuddling in bed and he got up to make her coffee in the kitchen, just like he used to. When she joined him a few minutes later, he was fully dressed and headed for the door. "Listen," he told her, "this has been really great but I need to run. Give me your number and I'll call you."
"I can only imagine the hurt that woman felt," says Graulich. "The pain of just the idea that her husband was 'cheating' on her; she felt used that she had just shared something intimate with someone who didn't know her."
"The man who asked me to dinner?" Graulich says. "He opened my eyes to the pain that caregivers suffer."