There are not many books or articles that deal with the special psychological and emotional issues encountered by the caregiver whose patient is a spouse. Dr. Ruth Westheimer does -- very honestly and accurately, for gay and straight partners -- in her new book, Dr. Ruth's Guide for the Alzheimer's Caregiver.
She understands the nature of our loneliness. Although she is not and never has been a caregiver herself, she draws on her life experiences and the advice of many experts to produce a book that would be of interest to anyone just starting out in the caregiver role. It's a thorough summary of the nature of the disease, its effects on family, various medical and legal issues and she makes some helpful practical suggestions.
However, when she gets around to her speciality -- sex -- I didn't know whether to laugh or cry, so I did both.
First, she gives we caregivers permission to have an affair:
"If you need the companionship, the love, and yes, the sexual gratification of a relationship, then by all means, seek one out."
And, although she is careful to say she is not advocating infidelity, there are instances where she certainly seems to be:
"If your spouse is much older than you, or if your spouse has early onset Alzheimer's, that's an even stronger reason to look for a new partner."
Now, if that's indeed your desire, I don't think you need Dr. Ruth's permission. Or anyone else's. And I will not judge you. It's entirely your business. But I would like you to tell me how you find the time, the energy, and the emotion.
I am not Brooke Astor, who once told me that she put herself to sleep by counting the men she had slept with. But, way back when, before I married this man, I did have an affair. Or two. I didn't count then, and I won't count now.
Perhaps affairs have changed in the intervening 30-odd years. But what I remember is that they took some planning. Phone calls. Notes. Coded glances across dining room tables. The pressure of a knee. Your place or? Certainly not mine. Not now.
Once that is out of the way, there is the matter of pretty lingerie. Body cream. And pedicures. I have never known a woman having an affair who did not put great emphasis on having a pedicure. Not sure why. Do we walk into the bedroom on our hands, waving our feet? I think not. But an affair without a pedicure is unthinkable. And then there is perfume in private places. I am at a loss as to how any of that that will fit into my caregiver's day.
Getting away is always difficult for an adulterer but for the caregiver, it's a special problem. My cellphone is attached to my hip. Do you leave your cell phone on during your intermezzo? What if the aide left in charge needs to call you? Never mind the existential question of how you live with yourself if your partner dies while you are occupied this way -- what about the practical matters? Do you come back smelling musky? Or with wet hair?
Perhaps, if your partner is in a nursing home, the practical stuff is easier. But I don't know any caregiver who is actually giving care who has the energy or the emotion required for an affair. I certainly don't. The idea is laughable.
Dr Ruth also makes finding that new partner sound very easy:
"...no matter what your age, you'll benefit from having some companionship...the fact is, if you want the companionship from a relationship, you probably are going to have to accept the entire package which will include a sexual component."
Step right up to the companion buffet dear friends -- will you have sex as a side? Dr. Ruth should meet some of the widows and divorcees I know. Attractive women who are engaged in the community, meeting people. They're in better, less complicated positions than caregivers, and probably taking better care of themselves. They may even have regular pedicures. But, even using online services, they tell me that finding that "someone" is very difficult. Perhaps it's easier for the men. There are more women available. But for the most part, the men are looking for younger partners. Future caregivers perhaps?
There is something about this casual approach that I find offensive all round. First, it short-changes the affair. What you want from such a relationship, dear touch-hungry caregiver, is clear. What do you have to give? And once started, what makes you think you will be able to control where it goes? At my age, a new companion will probably be on the brink of needing caregiving himself. About this, I take my cue from Stephen Sondheim: I am definitely not doing it twice.
But above all, it fails to understand the power of a true marriage. Now I realize that Alzheimer's does not specialize in happy relationships. If you chose to be a caregiver when the relationship was not happy, then I am all the more admiring of your sense of duty. The idea of fidelity, and the dimension it adds may have been erased long before your partner's diagnosis with AD. Each of you may have already been going your separate ways, physically, emotionally.
But that is not always the case. Certainly not mine. Do I miss lovemaking? Yes. Emphatically yes. Even though I now have paid aides, at least twice a week, I give my husband his shower, because I need the physical intimacy of touch. We still sleep together. Sometimes, that means I don't get a good night's sleep. But that is outweighed by the sense of him beside me, the sound of his breathing, the knowledge that I can sometimes quiet his distress with a stroke of my hand on his arm. We are bound together by something greater than sex, greater than love, something so powerful it is beyond words. More now than what it was seven years ago when we entered the parallel universe of Alzheimer's.
Although he slips away from me, bit by bit, I believe that if I had an affair, he would know. He would sense it.
Perhaps, like Justice Sandra Day O'Connor, the day may come when a nursing home is the right place for my husband. And perhaps, like hers, my husband will find another partner in the dementia world. As he will then have entered into the amoral oblivion of amnesia, there would be no question of anger or jealousy or outrage on my part. I would be glad that he had found some pleasure in that foggy universe.
According to Dr. Ruth, that would be my "Get Out Of Jail Free Card." But, I will not have entered into oblivion: I will still have memory. And now that I have experienced this mingling of body, mind and spirit, I am not in the market for anything less.