I first noticed signs of concern during a wonderful post-retirement trip to Europe in the fall of 2006. My wife, Clare, was exhibiting behaviors I had never seen before and I was worried. Clare was misplacing and losing objects in restaurants and hotels. She was forgetting basic information, such as how many children and grandchildren we have. She was describing trips to countries we had never visited. And despite always having an excellent sense of direction, Clare was now getting us lost on a daily basis. When we returned home, I went online to several reputable websites and discovered that all of these behaviors were early warning signs of mild cognitive impairment and/or Alzheimer’s disease (AD). Although Clare denied having any problems, I convinced her to see a neurologist. She saw no need to do so, but agreed to do so to “ease my mind.”
I shared my observations with the doctor on our first visit and he asked Clare many questions. He then had an assistant give her a quick cognitive screening test and Clare received a near perfect score. The doctor told us not to worry ... that everything I had observed was probably due to the stress of our very active early retirement and all of our travel, and he suggested some ways for Clare to lessen her stress.
One year later I was now observing even more behaviors that worried me. I raised my concerns with our internist at our annual physical exams. He administered a cognitive screening test and Clare again received a near perfect score. His diagnosis was mild depression and he placed Clare on anti-depressant medication. Clare took this medication only briefly, however, due to side effects. However, I remained fairly certain that Clare was suffering from mild cognitive impairment if not already in the early stages of AD, despite what our doctor had said.
In the early fall of 2008, we returned to the neurologist. By this time I was keeping weekly logs of Clare’s worsening symptoms and new troublesome behaviors, and I shared these logs with the doctor. I noted how Clare kept asking me the same question over and over without any recollection of having just asked me that same question minutes earlier. I indicated that Clare’s aphasia was getting worse, and how she also was experiencing frequent agnosia, often unable to ”see” objects that were literally right in front of her. I told the doctor that Clare was forgetting how to do things she used to do routinely on the computer, and had lost interest in hobbies she had previously enjoyed. She was also getting lost while driving in our community.
The neurologist ordered more comprehensive testing this time ... more cognitive testing, complete blood work, and a brain scan. When we met with him to review all the test results, he indicated that whereas he saw no evidence of early stages of Alzheimer’s, he did see a negative change in her cognitive testing. However, he still strongly felt that Clare was basically fine and he could see no definitive signs of AD. He said that Clare’s memory issues and some aphasia that surfaced on the tests were probably due to anxiety and he placed Clare on anti-anxiety medication.
By winter, Clare’s symptoms were worsening, despite the latest medication. I asked Clare to let me find another neurologist for a second opinion, but she adamantly refused. I tried to convince Clare that, according to any reputable website I had consulted, her symptoms were not due to stress, anxiety, or depression. Clare, however, insisted that there was nothing really wrong with her and that the current neurologist had said words to that effect. So, we returned to that same neurologist’s and this time Clare’s results on cognitive testing were extremely poor. The surprised neurologist now issued a diagnosis of severe cognitive impairment due to depression, and arranged for Clare to meet weekly with a cognitive psychologist. He also strongly suggested a series of individual cognitive fitness training sessions offered by an assistant for an additional fee in his office that could begin in about 3 months, and said that all of this, along with some new medication, should result in Clare’s symptoms improving a great deal within 6 months.
After 3 months of weekly visits with the cognitive psychologist, and one week before Clare’s cognitive training sessions were scheduled to begin, Clare’s symptoms continued to worsen further. I confronted the psychologist in Clare’s presence and asked if he were in my position with his wife, wouldn’t he take his wife to another doctor for a second opinion? Thankfully, he indicated that he would, and I turned to Clare and asked, “So now can we get a second opinion?”
Clare reluctantly agreed and I told her that I had researched three new doctors, two neurologists and one geriatric psychiatrist. In the spring of 2009 we met with a geriatric psychiatrist associated with a hospital-affiliated Alzheimer’s Disease Research Center. Before that first testing session was even completed, the doctor told me that whereas it was too soon to tell if Clare had AD, her problems were definitely not due to stress, anxiety, or depression and he wanted her off all of that medication. After much more testing over the course of the next few months, Clare was diagnosed with early/young onset AD. She had just turned 63.
In 2011, as Clare’s AD continued to worsen, I started her in a social model day care program one day each week. By 2013, Clare was attending day care programs four times per week. It was becoming increasingly clear to me that I would soon no longer be able to properly care for Clare by myself at home. Prior to retirement we had discussed our preferences should either of us ever need long term care, and we both decided we’d prefer placement in a facility rather than hiring 24/7 aides for our home. In September, 2013, Clare was admitted into an Assisted Living Residence (ALR) dementia wing. My role then changed from being Clare’s 24/7 caregiver to her daily part-time caregiver and her full-time advocate.
Clare has become more and more confused, frail, and dependent upon others since placement. Except for music, her short and long term memory have basically vanished. On most days she is unable to recognize our children and grandchildren, but Clare still knows me, recognizes me as her husband, and misses me when I am not there. However, on one recent occasion she has kissed a male ALR resident on the lips and given him a good night hug thinking he was me.
Clare and I were very fortunate to experience a “fairy tale” marriage. We met right after our sophomore year of college, became engaged during our junior year, and married a week after graduation. We had been best friends before our marriage and have been best friends and deeply in love ever since. However, due to Clare’s worsening AD, we obviously no longer have the same relationship we once had. In many respects, our relationship now is more akin to parent/child rather than husband/wife. I visit with Clare each day but we can no longer talk about anything for more than a few seconds before she gets very confused. I miss not having conversations with Clare. We can no longer play games, travel, or engage in sports together. We can no longer share virtually any of the activities we used to engage in together. I miss all of that, too. But each day we find time to hug, cuddle, and kiss ... often on the couch while watching TV in one of the ALR’s many lounges ... and still see musicals in neighborhood theatres and take walks at a nearby beach when the weather cooperates.
I still love Clare deeply and she still loves me just as much. That will never change. But aside from no longer being able to share and discuss matters or participate in most activities together anymore, we have not had a fulfilling sexual relationship in many years. And, as Clare fades faster and faster, I know that it won’t be long before Clare no longer recognizes me or knows who I am with certainty. In many respects, it is as if I am now already widowed.
I have reached the stage where so many Alzheimer’s spouses find themselves ... married, yet widowed at the same time. My best friend for nearly 50 years, my lifelong partner, my lover, my wife, my children’s mother ... all of these roles have already faded or are fading rapidly. I am learning to do more things by myself, alone in a house we had lived in together for forty years. Going to sleep in an empty bed was incredibly difficult that first night after Clare was placed. It’s now well more than a year after Clare’s placement and coming home to an empty house and an empty bed is still difficult. Doing everything by myself that we once did together is also very difficult at times. I still find myself crying at my loss ... at our loss ... of the once bright future we had as young retirees that came to such an abrupt and premature end due to Alzheimer’s.
I miss all of the social, emotional, and physical parts of our once close relationship. A lot. But while Clare is still able to tell me she loves me, even if unable to function as my wife, how can I “be with” another woman without feeling tremendously guilty? I’m human and still in my 60s ... I have physical desires. Ironically, I can still have sex with Clare. Although she has had absolutely no interest in having sex for several years ... and, in fact, will giggle like a child if I hold her in a “private place” ... she will still do anything for me much like a child wants to please a parent. Yet were I to take advantage of her willingness to please me, I would feel like I’m taking advantage of her, not enjoying mutual sex.
I still love Clare so much, and she still loves me so much, so how can I “date” another woman for companionship, let alone go to bed with and have a physical relationship with another woman, while Clare is still alive?
I am an Alzheimer’s spouse. I am married to the love of my life, but except for a few hours each day I am living completely apart from my wife knowing that her AD will worsen more and more until certain death. I now live most of my life as a single man. In a very real sense, I am already widowed. I am an Alzheimer’s spouse ... married, yet widowed, at the same time.
Published in AFA Care Quarterly, Spring, 2015, pp. 13-14. Access at: www.alzfdn.org.