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Remembering intimacy

Companionship, romance are tonics for Alzheimer's patients

By Rebecca Jones, Special to the Rocky

Published April 20, 2008 at 3 p.m.
Updated April 21, 2008 at 1:33 p.m.

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Hallie Pasko visits her mother, Beth Deane, who had Alzheimer's disease, in her assisted-living home three years before her mother's death.

Photo by Barry Gutierrez / The Rocky/2002

Hallie Pasko visits her mother, Beth Deane, who had Alzheimer's disease, in her assisted-living home three years before her mother's death.

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Hallie Pasko knew her mother's new relationship had gotten serious when the 85-year-old woman told her she needed a bigger bed - so her boyfriend could sleep over.

Trouble was, her mother, Beth Deane, had just moved into an assisted-living facility and was sinking ever deeper into dementia. Her life was often a jumble of forgetfulness and confusion. The same was true of Deane's romantic partner, who had moved into the room across the hall.

"They had a great time. They enjoyed each other's company," said Pasko, 59, an interior designer who lives in Niwot. "They spent a lot of time together, not only in the social areas, at lunch and dinner, but also private time in one or the other's room. The nurses said you never could tell what you'd find when you walked in. There was a lot of snuggling, a lot of touching."

Pasko's mother and her paramour were both widowed, so the question of infidelity to a forgotten spouse never arose. Both families approved of the relationship because they felt it helped both adapt to their new living situation. "It meant they had a friend, somebody who made being there a good thing," said Pasko, whose mother died in 2005.

Such relationships among sufferers of Alzheimer's disease are not uncommon, say geriatricians. Some estimate up to 10 percent of Alzheimer's patients living in care facilities will develop a romantic attachment to a fellow resident.

Last fall, the family of retired U.S. Supreme Court Justice Sandra Day O'Connor revealed that her husband, John O'Connor - who has had Alzheimer's for many years - had fallen in love with another patient at his nursing home and that Justice O'Connor was pleased and relieved. He no longer remembered his wife, but the new woman in his life had helped lift him from depression, family members said.

But not all families are as accepting of such relationships. Care facilities also often discourage romantic relationships between cognitively impaired patients.

"You're dealing with people who are not responsible for their own lives," said Dr. Michael Wasserman, a geriatrician with Senior Care of Colorado. "Their children are responsible. And if the daughter walks in and sees Dad holding hands with another woman besides Mom, well, children may have issues with their parents taking on another companion."

That's a pity, Wasserman said, because companionship can help them remain physically healthy.

"No matter how old you are, companionship is vital," he said. "Our ability to deal with ill health is enhanced with happy emotions. I had one patient tell me that 90 was much better than 89. And the reason was, she'd found a companion. Her health improved and it allowed her to deal better with her pain."

But what really happens in a relationship where both parties struggle with confusion and memory loss, where their conversations with each other often don't seem to track?

"When two people with Alzheimer's link up, they tend to connect at a level that is beyond memory level," Wasserman says. "They may not remember each other's name, but they remember each other emotionally. Can I explain it? No.

"They may be carrying on two different conversations when they're talking to each other. But when they're together, they're recalling that they feel good in the presence of this person."

Wasserman recalled one patient whose Alzheimer's had made him violent. Once he formed a relationship with a fellow patient at his facility, he became more relaxed and subdued.

He mentioned another patient whose wife understood that he didn't know who she was anymore.

"She made sure that at the Valentine's Day lunch at the care facility, her husband was sitting with her, and so was his girlfriend. It was one of the greatest acts of love I've ever seen."

Pasko recounted a phone call she got from her mother's care facility, warning her that her mother was exceptionally confused and agitated.

"I talked to her, and she didn't know where she was or what was happening," Pasko said. Pasko told her to look around and see that she was surrounded by her favorite things. "And I said, 'In a little while, Ken will get up and the two of your can go to breakfast.' And she said, 'Who's he?' I said, 'He's your friend. He lives across the hall.' And she said, 'Do I l like him?'

"That's what relationships with Alzheimer's are like. They may remember, they may not remember."

As time went on, Deane's friend's condition worsened more rapidly than hers. Eventually, his family decided to move him to a facility better equipped to care for him.

"At first, she didn't understand, and he also didn't understand why he had to leave. It was very sad," Pasko said. "It was like breaking up."

Pasko believes her mother had completely forgotten about her boyfriend within a couple of months. She lived for more than a year afterward.

Heidi Pedersen, administrator of Chateau des Mons, an assisted-living center in Englewood that specializes in treating patients with dementia, said she's seen a number of romances blossom during her seven years at the facility.

Pedersen said her staff won't discourage such relationships as long as they appear to be consensual. When a new resident is admitted, she said, family members are briefed on the possibility that an intimate relationship with another resident might develop.

"Some of the families think that's great. But they need education from the very beginning. What blows them away is if they don't have any idea in advance that this could happen."

Pedersen believes romance and intimacy serve a vital function for people with greatly diminished cognitive ability.

"Sometimes people need to reconnect and experience those feelings again before they pass on," she said. "So even if they haven't had a relationship for 25 or 30 years, sometimes they need to meet that need."

Knowledge can prepare spouses, kin

The most important step that families living with Alzheimer's disease can take is to gain an understanding of the disease.

While symptoms include short-term memory loss, over time judgment, decision-making and speech are also affected, says Sara Spaulding, spokeswoman for the Colorado Chapter of the Alzheimer's Association.

"The 'long goodbye' can last for as many as eight to 12 years," she says. "And as the disease progresses, a loved one with Alzheimer's lives more in the moment and in a world of their own."

The Alzheimer's Association offers counseling so spouses and children can understand what is happening, the stages of the disease and what families can expect.

"The best learning comes from sharing experiences with those who have already been there," Spaulding says. "And the Alzheimer's Association 24-hour help line (1-800-272-3900) means there is a compassionate voice at the end of the phone any time a wife, a husband or a friend needs someone to talk to."

Online help is available at alz. org/co.

Some other suggestions for families whose loved ones seem to have forgotten old attachments and developed new ones:

* Given your loved one's cognitive decline, you may not be able to have the same level of physical or emotional intimacy as before. Accept the normal feelings of grief and loss that may accompany this.

* Do things you enjoy. Caregivers often give up enjoyable activities and companionship. Make a lunch or movie date with friends.

* Learn to feel comfortable accepting and celebrating good things in your life.

* Have a family meeting. Talking about changing relationships can help ease tension. You may want help from a professional counselor or member of the clergy.

* Remember that changes in sexual behavior are not reflections of the person's character. They are symptoms of the disease.

* Don't overreact or express shock.

* Avoid becoming angry.

* Don't shame or ridicule the person.

* Remember to be sensitive and reassuring.

Source: Alzheimer's Association

'Away From Her'

A 2006 movie, which earned Julie Christie an Oscar nomination, is a compelling tale of romance and Alzheimer's disease.

Comments

  • April 20, 2008

    4:05 p.m.

    Suggest removal

    socialobserver writes:

    How touching and true this article. My mom was diagnosed with Alzheimer's seven years ago -- at the age of 65 -- and is now, at the age of 72, a permanent resident in a Alzheimer's facility.

    My mom (dad's been deceased 25 years), has always been a caring and affectionate woman....a truly social being. Upon her entering a facility, within a couple of weeks she had a new "friend"....a man whose wife had died several years ago.

    We were, as a family, asked if it was okay for such a situation to continue. Without hesitation, we unanimously said yes! Even though someone may be afflicted with Alzheimer's, they are still human beings to the core....and they require companionship and affection....all the things we otherwise desire and require; take for granted. Just because someone has Alzheimer's, doesn't negate their very basic human traits and needs to have these important attributes remain a part of their life.

    Thank you for this prevalent article. Who among us would choose to let our loved ones forego such important basic human needs if such were to become available to them? Although someone may be afflicted with the tragic consequences of Alzheimer's, I for one do not believe their basic human needs go away in the face of such a sad and tragic illness.