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A Different Kind of Valentine’s: Sexuality and Dementia

Most of us are comfortable with the Valentine’s Day images of hearts, flowers and romantic encounters among people who have young, healthy, beautiful bodies. But how do you suppose all the starry-eyed young lovers out there would react if they knew that their grandparents were still interested in love, passion, and sexual pleasure? (My guess is that most of them would be totally grossed out!)

The good news (or bad news, depending on your perspective) is that we never age out of our sexuality. We are born as sexual beings. We die as sexual beings. Even so, doctors are reluctant to talk about sex with their older patients, and adult children get very uncomfortable when their parents start talking about their love lives.

Case in point: on October 30, 1993, my dad, who appeared to be as healthy and robust as any 75-year-old man on the planet, had a debilitating stroke. The next day he was diagnosed with prostate cancer. My mother, who was in very poor health herself, became his full-time caregiver.

My parents lived on a farm in central Kansas, and in order to cope with her isolation and loneliness, Mom wrote letters to me about everything she was experiencing, and exactly how she felt about it.

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About four years after my dad started wearing adult diapers, I was quite surprised one day to open a letter and read that my dad had suddenly developed an obsession with sex. One morning at breakfast, he turned to my mother and said, “Madelyn, it occurs to me that you don’t want to have sex with me anymore.”

Mom said, “That’s right, Quentin. That part of our life is over.”

Then he said, “Well, if you’re not willing to have sex with me, would it be okay with you if I had sex with someone else?”

She couldn’t decide whether to be disgusted or amused, so she said, “You know what? Knock yourself out! Just go for it!”

Mom wrote that she would be delighted if Dad found another woman who was willing to have sex with him. Then the “other woman” could deal with his Depends. She could change his wet sheets in the middle of the night. She could pick him up off the floor when he fell, and she could just have him all to herself!

The Other Woman

The next morning Dad asked Mom to call Avis, (not the car rental company). Avis is the girl he had taken to his high school senior prom 60 years earlier. He wanted my mother to arrange a “sex date” for him.

Obviously, Mom didn’t want to call Avis, but Dad wouldn’t let it go. He followed her around the house all morning saying, “Have you called Avis? When are you going to call Avis? Why haven’t you called Avis? When you are going to call Avis?”

Finally she couldn’t take it anymore. She went to the phone and called Avis. Turns out Avis and her husband lived in Wichita, about an hour away, and they were planning on being in McPherson for a funeral that coming Saturday. Without telling Avis why my dad wanted to see her, Mom suggested they all meet for lunch.

When Avis entered the restaurant, she had her oxygen bottle strapped to her walker. Mom smiled smugly and thought to herself, “Well, that will take care of that!”

During lunch Mom told Avis’ husband some of the things she was doing to make caring for Dad less strenuous. She’d placed a plastic pad under his dining room chair so he could slide up to and away from the table with less effort. My brother had installed a ceiling hoist above the bed to make it easier for Mom to lift Dad. Avis’ husband described some of the things he’d learned that made his job as a caregiver easier.

After lunch my parents got in the car and headed home, and when Mom turned to Dad and said, “Well, what do you think of Avis now?” He said, “I think she wants me.”

This was the beginning of the “Avis Affair.” And it went on for months. Every ten days to two weeks I would get another letter in which Mom wrote about meeting with Avis and her husband. In the beginning I thought it was kind of amusing.

Having “The Talk” With Your Older Parents

Then one day I gasped when I opened a letter and read, “. . . Speaking of jobs, which we weren’t . . . I need for you to do something for me when you come home next week. I need for you to have the sex talk with your father.”

My dad was 80 years old and we had never talked about sex. This was not a conversation I wanted to have! But my brothers were mad at him. My sisters-in-law were disgusted, and Mom was exasperated. So, the task fell to me.

My husband and I flew home. I got Dad in the pickup truck and we went for a drive to look at the crops. I saw him staring out the window wistfully at a farmer in a tractor who was plowing his field, and I said, “Oh, Dad, I’m sorry you can’t farm anymore. I know you really miss that.”

He said, “I do, but that’s not the worst part.”

I said, “Really? What is?”

He said, “It’s your mother. . . She’s cut me off!”

I took a deep breath, pulled the pickup off to the side of the road, switched off the ignition and I said, “Dad, the reason you can’t farm any more is the same reason you can’t have sex. It’s the stroke and it’s the prostate cancer.”

Then I said, “And you know what? You’re not being nice to her. She is working so hard to take care of you, and this just isn’t respectful. And besides that, it takes a certain amount of physical dexterity to have sex, and you don’t have it! You’re a big man, and she’s a little woman, and you could hurt her!”

The more I talked, the more riled up I became. I was ranting when I said, “You haven’t even thought about the logistics, for crying out loud! Mom would have to drive you to the hotel. Avis’s husband would have to drive her to the hotel, and then what the heck do you think those two are going to do while you and Avis are in there trying to have sex? I mean seriously, do you think Mom’s going to put the ceiling hoist in her purse, bring it into the room and help you out?’

I pounded my fists on the steering wheel and hollered, ‘“No, Dad! Stop it!”

What You May Not Know About Sex and Dementia in Older Adults

How I talked to my dad is a textbook example of what not to do if you want to have a successful conversation with a person who is displaying dementia-related inappropriate sexual behavior. Unfortunately, at the time there were several things I didn’t know, beginning with the fact that you can never, ever win an argument with a person who has dementia. My dad had stroke-related dementia, a term we’d never even heard and certainly didn’t understand.

The second thing we didn’t know is that surprising, uninhibited and inappropriate sexual behavior is not at all unusual for stroke survivors, individuals who have Alzheimer’s, and people who are taking Dopamine to control symptoms of Parkinson’s.

Taking It In-Stride

A few weeks after I botched the sex talk with Dad, I got another letter from Mom. She had decided to sit down with Dad and have a logical conversation. She intended to convince him that the whole affair with Avis was nonsense, and that it was time for him to get over it and stop talking about it.

About ten minutes into their conversation, she realized he just wasn’t playing with a full deck. So instead of being upset with him, she decided to have fun with the story.

She called Avis and told her why Dad had wanted to see her so often. Avis and Mom laughed and laughed, and Avis had a great deal of fun going to her cousin’s beauty shop and telling all of her friends about her amorous boyfriend in McPherson. Avis’ husband didn’t get upset. He was actually very kind about the whole situation, and who knows, maybe he even looked at her a little differently knowing there was another man who found her absolutely irresistible.

Several months later, I got a letter Mom after they’d had another get together with Avis and her husband. On the drive home, Dad turned to Mom and said, “I’m glad I didn’t marry Avis.”

Mom said, “Really, why’s that?”

He said, “Didn’t you see her teeth? Our kids would have looked like chipmunks!”

That was the end of the affair. Dad forgot about wanting sex, and he went back to being the loving, faithful husband he had always been.

What’s In a Name?: Bert and Maggie’s Story

Bert and Maggie were in their early 80s, and they had remained sexually active even as Bert’s Alzheimer’s advanced. For months, Maggie’s family had been encouraging her to move Bert into a memory care facility, and she had refused. But when Bert finally reached the point where he could no longer remember her name, Maggie said, “That’s it. If he doesn’t know who I am, I am not going to take care of him, and I’m certainly not going to have sex with him any more. I’m done! It’s time for him to go to assisted living.”

On the first night when a young female nurse assistant came into Bert’s room to help him remove his clothes at bedtime, he grabbed his belt in one hand and grasped the fly of his trousers tightly in the other and said, “I can’t let you do that. My wife would not approve.”

He told the CNA that she was a very attractive young woman, but he was not gong to have sex with her because he loved his wife. He then asked her to leave his room.

When the CNA told Maggie what Bert had done, Maggie beamed. The next day she told her daughter, “Maybe I’ll bring him home over the weekend for a little visit, and maybe I’ll let him have sex with me one more time.”

Surprise in the Medicine Cabinet – Frank and Shirley’s Story

When Shirley’s Alzheimer’s advanced to the point that her husband Frank could no longer care for her at home, their daughter Diane flew home to help them move into a long-term care community. As Diane was packing the contents of her 92-year-old father’s medicine cabinet, she came across a prescription bottle for Viagra.

Carrying the bottle between her fingers like it contained an active smallpox virus, Diane marched into the kitchen where Frank was packing dishes, held it up to him and said, “Really, Dad? Viagra? Really?”

Frank stood up, faced his daughter, and with his hands on his hips he said, “She may not remember my name, but when I put my arms around her and I kiss her, she never forgets what comes next.” He said, “It’s the one thing that keeps us connected. It relaxes her and it makes her happy. And if that makes you uncomfortable, get over it!”

He took the pills from Diane, shoved them into his pocket and went back to packing the dishes.

What Family Members Need to Know

All three of the stories in this article are true. I changed some names, but the events are factual.

We live in a society that celebrates youth and beauty. Magazines and movies feature nubile bodies, soft lighting and romantic settings. The visual image of old people having sex tends to make us a little squeamish, especially when those old people are our parents or grandparents.

But the truth is, we never outgrow our desire for affection, our yearning for intimacy, and our need to love and be loved.

As I reflect back on the “Avis Affair”, the thing that impresses me the most is the fact that my mother didn’t know the science behind the damage that had occurred in my dad’s brain, but she did know him. She knew that Dad’s obsession with Avis did not diminish the love they had shared or the sanctity of their marriage. She made a conscious decision to not feel angry, jealous or hurt. She chose instead to focus on the humor of the situation and have fun with the story.

Although Alzheimer’s had erased Bert’s wife’s name from his memory, he had not forgotten that he loved her and would always be faithful to her. When Maggie talked to the CNA, she understood that despite all the memories the disease had stolen, Bert was still, at his core, the man she had known and loved for more than 50 years.

Initially Diane was repulsed at the idea of her parents having sex, but she came to realize that when two people can express love and experience physical and emotional intimacy, it is a precious gift, regardless of their age or our relationship to them.

It can certainly be disconcerting when we witness sexuality in older people – especially when those people are our parents and grandparents, but try to look on the bright side. When all of us reach our 80s and 90s, it’s entirely possible that we, too, may have more to look forward to than mealtime and Bingo!

Happy Valentine’s Day!

Have you or a loved one had an experience with dementia in a relationship — sexual or otherwise? Share some of your humorous, heartfelt stories with us in the comments below. We’d love to hear from you.

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Elaine K Sanchez, www.EKSanchez.com is an author, caregiver speaker and co-founder of CaregiverHelp.com, a video-based caregiver support program. She also writes the daily blog, “Caregiver Help Word of the Day”.

Other information about Sex and Dementia:

TEDx Talk, “Having the Sex Talk with Dad”

Alzheimer’s Association – Sex and Dementia

Family Caregiver Alliance – Sexuality and Dementia

This article in Slate Magazine tells the love story of two people with dementia and the heartbreaking results when the man’s son decides their relationship is inappropriate.

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