Sex and Intimacy with Alzheimer’s Couples

How Mike and I Kept the Spark Alive

Mike & Me author Rosalys Peel

Much has been written about the sex or intimacy problems typically associated with Alzheimer’s. But relatively little has been written about the thousands of Alzheimer’s couples who not only remain deeply in love but are also able to enjoy intimacy with their partner right to the end.

I devoted a long chapter to this topic in “Mike & Me” for this reason: I wanted to assure you and other Alzheimer’s couples that love, yearning and beauty can continue to grow and survive even in the shadow of this discouraging disease. Here are a few important points from that chapter.

According to the Alzheimer’s Association, the most common intimacy or sexual problems with this disease are:

Misidentification of intimate partners
Fear/paranoia around intimacy
Accusations of infidelity
Caregiver loneliness
Excessive demand for sex

By working together, Mike and I were able to avoid these issues almost entirely. Throughout the entire nine-and-a-half years of his illness, Mike did not lose his desire for me, or fall in love with someone new, or make unreasonable demands for affection, or say things that were inappropriate.

To the contrary, Mike’s concern for me, his frequent gestures of appreciation, his tender eye contact, and his ability to remember our love story when I reminisced with him continued year after year. As unlikely as it may seem, we even made love just months before he started hospice care. And my feelings for him followed the same path, defying the daily frustrations of Alzheimer’s and bringing us even closer together in love and affection as time went on.

Were Mike and I just lucky or quirky? Or could it be that more and more Alzheimer’s couples can be encouraged and taught to nurture this kind of intimate companionship throughout most if not all of the disease?

The answer may start by simply talking things through together. Soon after Mike was diagnosed, we both began having fears about where our marital relations might be heading. I had seen reports of married Alzheimer’s patients falling in love with another patient or caregiver. And Mike had heard on the radio that people with Alzheimer’s may enjoy sex at first, but eventually lose interest. Through the years Mike and I had typically talked about our fears, and so that’s how we approached these new fears, too.

I listened closely to Mike’s worries and then assured him that he had always been a good lover and that I was optimistic that would continue. Then we both agreed that we were currently enjoying our love life so there was no point in worrying about something that was not yet a problem.

The fact that Mike and I were able to continue making love for years after that initial talk should be interesting and hopeful for all Alzheimer’s couples—but it wasn’t the most important thing to Mike and me. Sex or no sex, the important thing for us was to maintain the love and special connection that originally brought us together, long before Alzheimer’s entered our lives.

SEVEN WAYS MIKE AND I KEPT THE SPARK ALIVE

Again, Mike and I were committed to managing Alzheimer’s together at home as long as possible. Living at home as husband and wife made it easier for us to maintain a close, loving, physical relationship to the very end. But the simple loving things that helped us keep the spark alive can be adopted by you and your loved one in any living situation:

Assure the one you love how special they are, not just now and then, but regularly.
Tell him or her you are proud of them for managing this difficult disease.
Bring out your treasured old photos again and again, and use them to re-tell your loved one the familiar stories of your romance.
Look for new ways to praise and appreciate your partner in your everyday life.
Talk openly about your love life and remind your partner what you like.
Plan your intimate moments in advance (mornings worked best for us.)
Despite Alzheimer’s, continue to make time for dating and romance, no matter how simple your “dates” may eventually become.

As you will see in Chapter 9 of Mike & Me, it was not the big romantic dinners or expensive cruises that kept the spark of love alive for us. A tender touch, a thoughtful smile, a sincere thank you or a simple “I love you”—these are the precious little things that help chase the Alzheimer’s shadow away and keep the lamp of love burning brightly.