There's nothing easy about taking care of a partner or spouse with dementia.
But one of the most often overlooked challenges facing caregivers who have romantic relationships with an elder suffering from Alzheimer's or another form of dementia, is how to deal with a forever altered intimate life.
"For couples dealing with dementia, there are so many losses," says Ruth Drew, Director of Family and Information Services for the Alzheimer's Association. "There's the loss of the life they had, the loss of the life they expected to have and the loss of partnership with a husband or wife."
Memory-robbing illnesses are riddled with these and other losses, but one aspect that remains intact, despite a person's flagging cognitive abilities, is the need for intimacy, both physical and emotional.
According to Robin Dessel, Director of Memory and Vision Care and sexual rights educator for Hebrew Home at Riverdale, the older a person gets, the more they need human affection. "There's no less want or need for camaraderie, intimacy and touch as we age," she says, adding that, "loneliness is one of the foremost reasons of depression in the elderly."
The end result is that both caregivers and their loved ones are left trying to figure out how to balance their respective desires for connection and affection with a relationship that is constantly being altered by a progressive disease.
How memory loss affects sexual behavior
Dementia can have a wide-ranging impact on a person's views, reactions and behavior when it comes to sex and intimacy.
An individual's inhibitions may become lowered, causing them to say or do things that are uncharacteristically crude and vulgar. This can be very startling and off-putting for friends and family who are used to interacting with people who adhere to society's unspoken sexual mores.
Memory loss may also cause a person to become stuck in another time period. With Alzheimer's in particular, short-term memories are one of the first things to go. This means that a sufferer may still view themselves and their partner as being young; they won't be able to recognize their face in the mirror or the person next to them in bed. This can cause extreme anxiety and confusion, and may make intimacy nearly impossible.
When a life partner no longer remembers a life-long relationship
A person with dementia may sometimes forget the decades-long relationship they shared with their caregiver partner.
It's not unheard of for a memory-impaired individual living in long-term care to seek solace in the arms of someone they met at their facility—even while they are technically still married or in a relationship with their life partner. It's a more common occurrence than one would like to think, according to Drew.
But how can a caregiving spouse cope when their partner appears to turn their back on the love they shared for decades in favor of a newly-minted relationship with someone they just met?
First and foremost, Dessel urges family members to try not to view such couplings as a betrayal. A directive she freely admits is easier given than carried out. It may take months—even years—to adopt this type of pragmatic perspective.
Perhaps the most well-known example of this selfless gesture is former Supreme Court Justice Sandra Day O'Connor who, after learning that her Alzheimer's-stricken husband had formed an intimate relationship with a woman in his long-term care facility, gave the couple her blessing.
"Mom was thrilled that Dad was relaxed and happy and comfortable living here," said O'Conner's son, Scott in a 2007 interview with KPNX-Channel 12, a news station in Phoenix, Arizona.
The key is to approach the issue with an open, and loving, heart and mind and a thorough understanding of how dementia can alter a person's sense of reality.
Coping with complicated issues by living in the now
Human beings can only live in the present moment.
For people suffering from dementia, that present moment is often altered. They may not remember the past relationship they shared with their caregiver spouse, all they know is how their new paramour makes them feel.
"It isn't an act of malice," says Dessel of cognitively impaired individuals who seek new relationships. "For the people in the relationship, it's real-time. They are being monogamous and bringing one another pleasure and comfort."
Dementia often dumps extreme amounts of anxiety and frustration onto the heads of its victims. Pleasure and comfort are two things that people with the disease desperately need, but often lack.
That's why, as challenging as it is, caregivers and other family members should view acceptance of such unconventional couplings as an act of love.
"Sometimes, loving someone else means not being selfish with your love," says Dessel. "If I had a loved one stuck in the throes of that reality, I would want to know that there was something that brought them happiness."
Sources of support for a caregiving spouse
One of caregiving's most dangerous myths is that people taking care of elderly loved ones are alone in their struggles. This misconception adds to the pain and isolation felt by family caregivers dealing with difficult issues, such as the one surrounding dementia and sex.
As a caregiver, you're never alone—here are just a few questions about issues of intimacy and elder care, asked by real-life caregivers:
- How do I get over the guilt of wanting to be romantically involved with someone other than my husband with dementia?
- Does caregiving for a significant other kill romance?
- How do I handle recent sexual obsession by my invalid husband?
- My grandfather has a girlfriend at his assisted living facility. I just found out she is cheating on him. What should I do?
- What are the moral issues when spouses of Alzheimer's patients seek outside relationships?
When caring for an ailing partner Drew points out that every situation is unique and there are no "cookie cutter answers." Nothing will make the process totally pain-free, for the caregiver, or the person suffering from dementia.
There are, however, common themes and experiences that can be shared from caregiver to caregiver. Reading about a fellow caregiving spouse's experience may give you an idea of how to better handle your unique situation.
When grieving the disintegration of an intimate relationship with a dementia-stricken loved one, Drew says it's essential to keep in mind that your feelings are both normal and natural. The best way to get through them is to find safe havens where you can share your emotions and talk them through with other understanding individuals.
This might be with a counselor or therapist. It might be with a close friend or family member. It might be in an online support group, similar to the Alzheimer's Support Group on Agingcare.com.