JOAN’S BLOG – TUESDAY, MAY 20, 2008 – MARRIAGE, SEXUALITY, AND ALZHEIMER’S DISEASE

Since this is a website devoted to the issues faced by spouses of Alzheimer patients, the topic of marriage and sexuality is going to keep surfacing. When I started this website almost a year ago, I found one book on the subject – a dry clinical study. It was never discussed in my Support Group; it was never mentioned in the media; and if it was mentioned on any Internet forums, the writer was usually admonished for trying to talk about it.

That is changing. I have written a series of Blogs on the subject - #1, #2, #3, and #4. I also wrote two blogs about AD caregivers finding romance with each other, while still caring for their AD spouses - 8/29/07 and 2/21/08. There are now more discussions both in print and TV media related to this subject that just a year ago. I would like to think this website had some responsibility in bringing this issue to the forefront; certainly Sandra Day O’Connor’s courageous decision to go public about her husband’s nursing home romance had a lot to do with it.

Why do I care? Why do I think it is an important subject to discuss? The same reason I started this website – so spouses would stop feeling alone and guilty; so they could connect with other spouses who were experiencing the same struggles, confused emotions, anger, and pain related to marriage, sex, and Alzheimer’s Disease; so they would learn that these feelings were universal among other AD spouses.

Today, I am printing two excerpts from articles written by the real “experts” on the subject – spouses who have experienced the erosion of marital sex and intimacy because of Alzheimer’s Disease.

Betty Weiss, our reader and author of two books( When the Doctor Says Alzheimer's - A Caregiver's Guide to Alzheimer's and Dementia and Alzheimer Surgery, An Intimate Portrait)about her journey through Alzheimer’s Disease with her husband, has written an article that will appear in the June issue of Today’s Senior Magazine . She has generously given me permission to print excerpts here. The entire article can be found on my Message Boards under the Sexuality topic.

“………But I do know that marital love can easily go from passion to platonic when your spouse has Alzheimer’s. The eternal misunderstandings, arguments, frustrations and physical exhaustion of the caregiving spouse will cause intimacy to vanish. And male or female, changing your loved ones diapers will put off the most ardent.

Wives complain that their previously sexy husbands have become clumsy, inept, forgetful, and don’t seem to be ‘there’ in the moment.  Husbands complain that wives have become so childlike that they feel as if they are raping a child.  How do you have intimacy with a man who calls you ‘Mommy’ or a woman playing with dolls?  For most caregivers, the love and years of building a life together does not die but keeps them even closer to their spouse as time goes on.  They never neglect the care of their mate, but life as a husband or wife as they knew it, the partnership, is forever gone.”

I have read Richard Taylor’s book, Alzheimer’s From the Inside Out; I have attended one of his lectures; and I have read all of his essays and newsletters. It was only in this most recent article have he and his wife spoken so openly about sex, marriage, and Alzheimer’s Disease.

“…………..Still, it's exhausting to be the person in charge all the time. It's hard not to long for the old days and for the man she married.
When Taylor talks to his peers, fellow Alzheimer's patients, the subject of sex sometimes comes up. Simply, flatly, he tells them, "It goes away."
He explains the problem on an intellectual plane: When couples hear the word "Alzheimer's," they tend to withdraw from each other, and that makes it almost impossible to be intimate physically or emotionally.
"It's too painful," Taylor says.
He talks about sex on a physical plane, too: "I've heard caregivers say, 'I'm not going to roll over and make love with my child. I'm not going to let my child roll over and fondle my breasts."
Taylor says, "Two people lie in bed naked. But they don't roll over and hold each other anymore."
He cheers up when he remembers what one woman told him after hearing his talk: "I'm going to go home and love on my husband. And I haven't done that in two years."
From another room, Linda approaches. She has a simple question:
"Can I see your wallet?"
He has a simple answer:
"It's on the dresser."
Already she is frustrated. And he is defensive.
Before Alzheimer's intruded in their marriage, Linda says, "People wanted to be around us because they knew we loved each other. Now people stay away because of the arguments.”Click Here for complete text of article.

Today’s message is as always – “You are not alone.”  If you are struggling with the loss of intimacy and desire, you do not have to feel guilty.

Please post comments on the existing Message Board topic: Sexuality

Feedback to joan@thealzheimerspouse.com

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