My wife, Clare, was diagnosed with Alzheimer's disease in 2009, a month after turning 63. I had actually started observing Alzheimer's warning signs two years earlier and started keeping a log of these behaviors, but Clare did not display these worrisome symptoms during office visits with doctors. She did very well on all cognitive testing and her brain scans did not cause alarm, so doctors initially treated Clare for stress. Doctors thought that Clare was having difficulties adjusting to our very active lives in retirement and treated her for stress.
However, I didn't buy that diagnosis for a minute. Clare had been more active when she was working than she ever was in retirement, and she had always enjoyed many hobbies. But Clare had now stopped playing the piano. She stopped doing jigsaw puzzles. She stopped singing regularly in the choir. I continued logging new symptoms and showed them to her doctors, but her doctors continued to ignore my observations and when her symptoms worsened they treated her for anxiety.
Clare was really good at hiding her symptoms during visits to doctors... until those symptoms could no longer be hidden. Cognitive testing was now revealing serious memory problems, and her neurologist started treating Clare for depression. As her cognitive testing scores worsened, the neurologist suggested that Clare also start seeing a cognitive psychologist. I had already lost faith in her neurologist, but Clare refused to let me take her for a second opinion.
I was now giving weekly copies of my logs to Clare's psychologist. After several months, and with her symptoms worsening even more, I asked to meet with the psychologist. I said to him, "You've been reading my weekly logs. If your wife had Clare's symptoms and these symptoms continued to worsen despite treatment, wouldn't you insist upon a second opinion?" The red-faced psychologist said yes, and I turned to Clare and asked if she would now let me take her for that second opinion. This time she said yes. Clare had refused to let me take her for a second opinion for almost two years because she liked and trusted her doctors. In hindsight, I should have been more forceful and taken her to another doctor sooner, despite her objections.
Two weeks after confronting her psychologist, we met with a geriatric psychiatrist affiliated with a major NYC hospital for an evening of comprehensive testing. Before the first hour was up, the doctor said that whereas he still needed to do more testing before he could make a diagnosis, he could already say that Clare was not depressed and he wanted her weaned off of her depression meds immediately. Two months later, after much more comprehensive testing at his NYC hospital, one of this country's 29 Alzheimer's Disease Research Center facilities, Clare received her diagnosis: early onset Alzheimer's disease, or EOAD, now more commonly referred to as young onset Alzheimer's disease.
Accepting that your wife has a terminal disease with no effective means of treatment or cure is not easy. However, whereas Clare was devastated because she had been in denial, the diagnosis did not surprise me and I accepted it. I had no other choice. But acceptance didn't make it any easier to appreciate that our lives would be changed forever. Acceptance didn't make it any easier to know that our hopes and dreams for the future would soon be gone forever. Acceptance did not mean absence of pain.
Acceptance of Alzheimer's hurts. It hurts a lot. And it keeps on hurting. I had no way of knowing just how much more pain was to come after my initial acceptance of that diagnosis. But that pain came. And that pain continues to come. I have accepted that there is no way to effectively treat Alzheimer's disease. I have accepted that there is no cure, and Clare will continue to decline. And I have accepted that Clare will eventually die from Alzheimer's.
Acceptance means that I must learn to live with this reality. I must learn how to get on with my life without having Clare by my side. I must accept that Clare and I are no longer a "we." Those "we" days are gone. I know that. Especially since Clare's placement in an assisted living facility nearly two years ago, Clare now has her own future, apart from me. And I now have my own future, apart from Clare. So having accepted that, why has it been so difficult for me to move on? Why is acceptance of my new reality still so difficult to... accept?
I had been Clare's 24/7 caregiver. When I needed some respite time, I enrolled Clare in a social day care program once a week. Eventually that grew to four days each week. But when I could no longer properly care for Clare by myself, even with 22 hours of respite time each week, it was time for a major decision. When we had retired, we discussed what we wanted should one of us need long term care and had both agreed we did not want aides living in our home. We took out long term health care insurance policies. In her lucid moments in 2013, I again discussed our options with her and she still favored a residential placement.
I have been living in "our" home by myself since September 2013 and have been enjoying activities by myself while Clare has been enjoying programs at her ALF. Instead of being her 24/7 caregiver now, I am her 24/7 advocate to be sure that her facility provides her with the best care possible. I continue to see Clare every day, wanting to hold onto our wonderful past and so Clare remains part of my present. We go out to eat twice a week, we see occasional musicals, and we sit at the beach. I want us to continue to share our love for each other during ordinary and special moments.
I am not in denial. I'm really not. I have accepted our "new normal." But even after all these months of living apart, even as Clare's symptoms have continued to worsen, I am finding it very hard "letting go" of her. I know, in time, I will have to do a better job of letting go, of getting on more with my own life. But not yet.
Acceptance is just one of many emotions one must deal with as an Alzheimer's spouse.
This is the second in a series of 10 weekly blogs 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 blog will be, "Reflections of an Alzheimer's Spouse... Affection and Love."
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 email@example.com.