Clare and I had what I often refer to as a "fairy tale" marriage. We met in a college classroom, became best friends, fell in love, and were married a month after graduation. We raised two children, enjoyed our work, and couldn't have asked for a better beginning to our retirement years. We welcomed four grandchildren into the world, traveled near and far, and were engaging in a variety of enjoyable activities. However, on one of our wonderful trips in 2007 Clare was saying and doing things that worried me. When we returned home and I did some research, I confirmed to myself that she was displaying some of the early warning signs of Alzheimer's. As her symptoms increased and worsened over the next few years, an Alzheimer's diagnosis in 2009 came as no surprise to me.
Clare and I are still very much in love with each other, but our relationship has changed dramatically and is now more like parent/child than husband/wife. Clare lives in a lockdown dementia unit of an assisted living facility, and I live alone in what used to be "our" home. I visit with her every day, we go out to eat once or twice each week, we still see some friends together, and we enjoy occasional trips to the beach boardwalk or to see musicals in local theatres.
Clare enjoys her daily activities in her facility, but she still misses me a lot. When she is between activities or has down time, she anxiously and repetitively asks, "Has anyone seen my husband?" When this happens, aides are usually able to redirect her to some other activity and most of the time she is fine. But Clare is not alone in missing her spouse. I, too, miss Clare... every day. A lot.
On every visit when "staying in," I take her out from her unit and we take an elevator to a second floor lounge to sit on a couch and watch TV. We cuddle, hug, and kiss, telling each other that we love each other. Within minutes Clare is usually asleep in my arms, and I feel very content knowing how happy and secure she feels when I am with her. On visits when I take her out, I always leave time for us to go to "our lounge" for an hour before bringing her back to her unit.
I cannot say that we are best friends anymore because Clare is no longer capable of understanding much these days. We used to share and discuss everything together about matters large and small. But those days are long gone. Best friends share details of their lives with each other, but I can no longer have meaningful conversations with Clare. However, even though Clare is usually too confused to understand what I am saying to her, I still share some highlights of my day on each visit. Clare cannot share anything with me anymore. She cannot tell me about her fellow residents, her activities, her meals, or her best or worst moments of the day. Clare now "loses her words" and forgets in mid-sentence what she wants to say, so even if she wants to tell me something she cannot do so. If she does manage to complete a sentence, it is almost always unintelligible.
Even though we are no longer best friends, we still love each other and I will show Clare affection for as long as she lives. And I know that Clare will show me affection for as long as she is able to do so. I want Clare to always feel safe and secure in my arms when we are together so that she has no worries or anxieties. I want Clare to feel happy and loved on every day she has left.
Some have suggested that I should stop visiting Clare so often... that doing so is "holding me back" from accepting my new reality and moving on with my life as an "I" instead of as part of a "we." And I suppose there is some truth to that because what Clare and I once had together is forever gone and will never return. We will never be that inseparable couple again.
And who knows... maybe at some point in my murky future I will even be lucky enough to meet another woman to share happiness with on a daily basis. But for now, and at least for as long as Clare still knows who I am, my affection and love is only for her. I am not looking for any new relationship with another woman. I am content with the emotional connection that I still have with Clare.
Affection and love are powerful emotions that are very difficult to get past.
This is the third in a series of 10 weekly postings that will share emotions I find myself dealing with regularly. It is my hope that these articles will bring some comfort to other Alzheimer's caregivers. In my support group, participants always seemed to find comfort when learning that others were experiencing similar feelings. My next article will be, "Reflections of an Alzheimer's Spouse... Anger."
Readers are invited to learn more about my journey with Alzheimer's, and read copies of more than 40 of my articles previously published in medical journals, caregiver magazines, and newspapers at www.allansvann.blogspot.com. If you would like me respond to any comments or have any questions you would like to ask, please email me directly at firstname.lastname@example.org.