Dear Family Advisor

My husband with dementia still has sexual desires for me, and I'm not sure what to do.

Last updated: Dec 15, 2008

This is really a thorny question. My husband has vascular dementia and has been in a nursing home since February. At times lately, he has been indicating his "need" for me physically. I have read that this can still be a very real need for people with dementia.We managed to successfully address this issue three months ago when I had taken him home for the day, but now he is unable to walk and it just isn't possible to take him home any more. He does forget about this subject, as he forgets everything very quickly. Should I be concerned about finding a way to accommodate him at this stage? (He has no recollection of our last "hurrah" three months ago.)

You might want to check in with your husband's doctor about this, but in general, it's perfectly OK for someone with Alzheimer's to have sexual activity. The question is: Do you want to be sexual with him?

As you say, for some people with Alzheimer's, sex is still a real physical and emotional need. It's a good a way to de-stress, release, and feel connected -- as it is for all of us. Others with Alzheimer's simply forget about sex and all things related. So if your husband is interested, you may consider yourself lucky.

Your husband isn't the only person to consider, though. How do you feel about it? I've talked with some spouses who find it normal and comfortable to be intimate with a mate who has Alzheimer's, and they welcome the chance to feel like a couple again. For others, it feels foreign.

It's easy as a caregiver to always put the other person first, but in this case you need to put yourself first. Don't feel pressured into doing something you're not comfortable with.

Intimacy with your husband may or may not be the same as it used to be. It may just be "sex," a biological release. Is that OK with you? I'm sure that in the course of your marriage, you've had lots of different types of intimate moments. Some are based on love and some are based on need. Some are routine; some are profoundly touching. Life gives us all different kinds of experiences. You may find your private times with your husband delightful and surprising, or comfortingly familiar.

If you choose not to be intimate with him, how should you tell him? If you do it the most direct way -- by saying "no" and stating your reasons -- he probably won't be able to understand. And it may leave him feeling rejected and demoralized.

A more effective way is to change the subject or to avoid it if you feel it hovering -- even if you have to fib about having to leave. I hate to say that, but lying to someone with Alzheimer's works better than trying to reason with him once his reasoning abilities are pretty impaired.

If you do want to be intimate with your husband, talk to the director or person at the front desk of his nursing home -- whomever you feel comfortable with. Let them know that the two of you need some "private time" and ask what's the best way to go about getting that. Does your husband's door have a lock on it? Is there a room that does? Can you put a note on the door? Can you bring in a bell to hang on the door or screen so that if you are walked in on, you still have some privacy?

It may feel awkward, but don't let that stop you from asking. Just state it in a matter-of-fact way. This is absolutely a normal situation and much more common than you think. You'll be doing the staff a favor! We're all happier and healthier when we've had a chance to be physical, and staff knows how difficult it is for couples to be separated. If they give you a wink when you leave the room, wink back! I'll bet it will make their day if they see you leaving with a big smile.

Leveling with the staff also has another benefit: It gives you a reason to talk to them, so that they get to know you and your husband. The more they know about him, the more they'll understand his needs and the better care they'll be able to give.

Even if you and your husband get into a good routine, be prepared for it to change over time. Be aware of his changing moods and abilities. Some people with Alzheimer's get moody, angry, paranoid, or even violent. Also consider that your husband might have sexual urges when you're not around. Many patients with neurological disorders lose their sense of inhibition and act on impulse. If this happens, it's not a betrayal of you, of course. It's just a bodily response and shouldn't be confused with the love that you and he built over the years.

There's also the possibility that your feelings about this may change over time. It may come to a point where you think it's no longer a good idea. In this case, he may pout, get upset, or become demanding. This can be very unsettling for a spouse. Try to remember that it's difficult for him to control his emotions and that he may very quickly forget what he so adamantly expresses in the moment.

Again, speak to the nursing home director or whatever staff member you're comfortable with about the situation. She may be able to help smooth things out and calm him down if he gets upset. As much as it may hurt to upset him, you're going to have to take care of yourself first.

I know what you're probably thinking: It's easy for me to to tell you to talk to the nursing home staff. You may have never talked about intimacy issues with anyone and it might feel uncomfortable, but take a deep breath and do it. If you still have the chance to bank a few sweet memories with your husband, it's worth it. My hope is that in the midst of this terrible storm, both of you will find solace (and maybe a little pleasure) in each other's arms. What a remarkable way to say, "I'm still alive!"