I am angry at our fate. Clare has a serious heart condition but her coronary artery disease was mostly under control with medication when we retired in our mid-50s and began an active retirement. However, in 2009, less than a year after Clare's Alzheimer's diagnosis at age 63, we went from being active retirees to a couple trying to cope with life one day at a time. There soon would be no more daily conversations about matters big and small. No more afternoons playing games for hours at our kitchen table. No more engaging in all sorts of enjoyable activities together at home and in our neighborhood. No more travel. No more physical relations in bed. And by the fall of 2013, Clare was living in the dementia unit of an assisted living residential facility and we were no longer even together in our home.
I am angry about all we have lost. I now wake up each morning and go to sleep each night without Clare by my side. There is no more present to fully enjoy with Clare, and there is no more future to look forward to as we had envisioned our future to be. But Alzheimer's has not just taken away our present and future; it has also taken away our past. Clare no longer remembers any of our past ... she cannot recall any of the wonderful activities and experiences we once shared. She no longer remembers our children and grandchildren, let alone other relatives or friends. Birthdays, anniversaries and special occasions do not register with her anymore. Alzheimer's is such a horrible disease, erasing one's past while ending one's present and future at the same time.
I am angry. Not at Clare ... never at Clare. She did not choose to have this horrible disease. But I am angry that Clare has this horrible disease. I have recited the "Serenity Prayer" so many times trying to accept the things I cannot change, trying to have the courage to change the things I can, and trying to have the wisdom to know the difference. Clare's continued decline is something I cannot change. I know that. I also recognize how lucky we were to have had those nine years to enjoy a wonderful retirement together. But that doesn't change the fact that I am angry.
Alzheimer's disease has absolutely no redeeming value. It is a disease that causes great pain for those who have it, and great pain for their caregivers. It is a disease that can rip apart families. I hate what is happening and will continue to happen to Clare. I am angry that I cannot have my best friend, my wife, my lover to be with me to share what I had hoped would be our long retirement years.
I cannot even begin to imagine how painful everyday life is for Clare. How painful it must be for Clare, a former language teacher, to be unable to find the words she wants to say. It is so painful for me to see her struggling so hard trying to remember what she wants to say. But no matter how hard she tries, she cannot find her words. The most basic facts of our lives together prior to her AD, and now the most basic facts of her everyday life by herself, are gone from her memory. And that, too, makes me angry.
It was our 48th anniversary on June 8th, but Clare no longer has any concept of the word "anniversary" nor does she have any concept of time. I took her out for lunch to one of the few places we can still go out to eat. (Wherever we go now must have a separate handicapped bathroom available because I must accompany Clare.) I reminded her of our anniversary many times that afternoon but, of course, each time was a revelation to her.The next day, aides told me that Clare had already forgotten that I had taken her out for our "anniversary lunch" only seconds after I brought her back to her unit. It is what it is.
Anger is an emotion that many caregivers carry with them. I am angry about Clare having Alzheimer's. Watching Clare die slowly but surely of this horrible disease just continues to make me angry.
This is the fourth in a series of ten 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... Anxiety and Depression."
Readers of this blog 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.