When Clare was in early stages of AD, I was her 24/7 caregiver. On her “good days” we continued living pretty much as we always had. We went out to eat, saw movies and plays, traveled, socialized with friends, and played word games that Clare could still enjoy. As Clare entered moderate AD stages and could no longer be left alone, we didn’t go out as much, did very limited travel, socialized with only a few friends, and rarely played word games. Most of our time was spent watching TV together. Staying home with Clare became my “comfort zone.”
In 2013, when Clare’s AD worsened to where I felt I could no longer continue as her 24/7 caregiver, she entered an assisted living residence. Other than visiting with Clare each day, I continued living alone in my comfort zone, spending most of my time watching TV. I felt both married and widowed at the same time.
Experiencing what psychologists call “anticipatory grief,” especially after Clare no longer knew who I was, I foolishly thought that Clare’s eventual death would not hit me too hard. But I was very wrong. For 2 years after Clare’s death I continued to experience considerable sadness, depression, guilt, and anger among other negative emotions. I just wasn’t ready ... or motivated ... to move out of my comfort zone and seemed unable to truly find happiness again.
This past spring, however, I started taking steps to move out of my comfort zone and move on with the rest of my life. I wrote about these steps in Personal Blogs #6-8. Clare will be in my heart forever, and I still have occasional painful moments such as when listening to some songs or watching sensitive scenes on TV or in a movie. But, despite some of those teary moments, I have found happiness again ... my “new normal.”
Writing has always helped me clarify my thinking. From the onset of Clare’s illness, writing articles for publication helped me organize my thoughts so I could ask doctors better questions, suggest ways to more effectively treat Clare, and try to improve overall communication with doctors. I wrote about these issues while trying to make life easier for Clare, and for me ... but I also hoped that my articles might be helpful to other AD caregivers.
Similarly, when Clare entered an assistant living residence, hospital, and nursing home, I wrote about what I observed ... AD patient care, programs, personnel, and communication. I wrote articles to suggest changes to improve the quality of life for people with AD in such settings. I hoped that articles published in medical journals would help doctors and long-term care administrators re-think how they were diagnosing, treating, and caring for people with AD, and how they treated and communicated with their caregivers.
I wrote op-ed columns for major newspapers to try to raise public awareness of AD and highlight the need for more government funding of AD research. And last year I started writing Personal Blog columns, posted only on this website, describing how I was dealing with life as an AD widower.
Writing has always been very cathartic for me. Describing what Clare was experiencing and how we were feeling helped me cope better during our AD journey. Writing about my lengthy bereavement in Personal Blog columns helped me eventually realize that I would only find happiness again if I forced myself to move out of my comfort zone.
After my 100th article was published in August, I recognized that to continue moving on I needed to stop writing about AD. When I posted Personal Blog #8 in September, I wasn’t sure if I would post additional blogs in the future. I can now say, however, that I expect this Personal Blog #9 to be my final posting. Now that I have moved out of my comfort zone and moved on with the rest of my life, I do not think I will have anything new to write about that could be helpful to others.
I will continue to monitor this site so it remains a viable resource for the 1000+ visitors who come here each month, and I will continue responding to emails from AD caregivers and doctors. I will also continue removing spam each month because a few visitors sometimes post comments about “spiritual healers” whose “magic potions” can cure AD.
Being an AD spouse caregiver is a role I wish for no one, and life as an AD widow or widower is not easy. Wherever you are on your AD journey, please make time to care for yourself. Best wishes for a happy and healthy new year.