Ten years ago I didn’t know my husband.  I was a widow after a long marriage, longing for love.  Nine years ago, we were passionate lovers, waiting breathlessly for our next encounter.  Seven years ago we were newlyweds, loving the new life we were creating together.  Now we are embarking on the Alzheimer’s journey together, and trust me, that’s not nearly as much fun.

I was strongly attracted to Charles’s willingness to be an active partner in our relationship.  He drove extra miles to meet me during our courtship; he called and texted and emailed; he continuously showed his investment in the relationship in myriad emotional and practical ways.  Needless to say, I loved it.  I am an affectionate, demonstrative, active person, and I knew I had truly met my match.  Here was a man who was strong and protective, but not sexist.  He loved me as much as I loved him, and that was a high bar to reach.  We delighted in our time together, marveled at the joy and excitement of midlife sexuality, and showed our caring in our daily lives.

Now, although he is still in the early-to-moderate phase of Alzheimer’s, Charles can’t do many of those things any more, and oh my, do I miss them.  It is a struggle for him to send a text – he hasn’t done that for a while – or sometimes even to remember how to answer a phone call.  He doesn’t drive or handle money, nor can he remember what I might like, so flowers and little gifts are a thing of the past.  He still holds my hand (usually after I take his), he kisses me back (but doesn’t initiate it), and he wants to be loving, but doesn’t really know how to put it all together.

I think I miss our playful conversations the most.  Charles had a lively mind, loved to play with words, and was willing to patiently talk through things with me.  I’m an extrovert, and as such, I “think with my mouth.”  I need to talk things through to figure them out, and an attentive audience providing intelligent feedback is crucial.  Now my challenge is to explain things in simple terms, to hang onto my patience when I need to repeat or re-explain things several times, and to realize that when Charles is tuning out, he is not being unloving – it is the villain Alzheimer’s that has stolen so many of the ways that he used to show his love.

The book Alzheimer’s Early Stages by Daniel Kuhn contains a great deal of information and wisdom.  It talks about the relationship shifts caused by Alzheimer’s, particularly for intimate partners.  While it is very sad to have to be in a parental role with your own parent or grandparent (something I experienced as my grandmother’s caregiver in the past), the changing role of the Alzheimer’s care partner is fraught with grief, upheaval, and a profound sense of loss.  Kuhn says, “In committed relationships there is an expectation that each person will do his or her part to nurture the other person.  Mutuality and reciprocity are inherent aspects of the marriage agreement or long-term partnership.  Unfortunately, AD no longer allows the spouse or long-term partner with the disease to fulfill his or her part of the nurturing bargain.  This is often a sad and painful reality  for the well spouse..Someone with AD who was your friend, helper, advisor, and intimate companion may no longer be capable of continuing in these roles.”

When I read these words, they struck a deep chord.  I don’t mind handling finances, arranging doctors’ appointments, doing the driving, and reminding Charles of things he needs to do nearly as much as I am deeply hurt by the loss of emotional reciprocity in our relationship.  I know it is Not. His. Fault.  Which makes me feel even guiltier and more upset when I become angry or irritable about the one-sidedness of things.

Kuhn mentions that some partners who met later in life may question whether their commitment to the person with Alzheimer’s is deep enough to sustain the relationship.  I know mine is.  I can’t imagine letting Charles fight this battle without me at his side.  I even know that I have and will grow from this painful journey, that I will learn things that will enhance my life, and that I am equal to the challenge – at least most of the time.  I know I need to write about my feelings – good, bad, and ugly – in order to cope, because I can’t talk them out with my life partner, and I can’t hold them in without doing physical and emotional damage to myself.  I know I will continue to lose my lover until he is gone, and I must try to face that reality with courage and grace.