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 100tharticle 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.
It’s been nearly 2½ years, but I’ve still been having difficulty fulfilling Clare’s final wish for me ... she wanted me to find “continued happiness” after she was gone.
Psychologists have written about how the loss of a husband or wife in an extremely close marriage can be particularly difficult for the surviving spouse. I can count on the fingers of one hand the number of married couples I’ve known with a marriage as strong as ours. Clare and I were truly each other’s best friend and we needed no one else to be with to make each day special.
Three months ago, in Personal Blog #7, I described 4 steps I had taken to move out of my comfort zone to try to find more happiness in my life. I had hoped that joining a nighttime bowling league, facilitating another AD spouse support group, joining an online dating site, and starting a relationship with another woman might bring me greater happiness and less loneliness. Some of these steps were successful, some were not, additional new steps were taken, and collectively these steps have resulted in a happier and less lonely life.
I am continuing to bowl in my Wednesday afternoon and Thursday evening leagues, but I quit my Friday morning league to join a Friday evening league, and I also joined a Monday evening league. I’m already enjoying my new evening leagues and am pleased to be spending fewer nights, alone, at home.
When asked to serve as a volunteer support group facilitator, I was told that the Association wanted to take advantage of my AD experience and knowledge base, and I truly looked forward to helping caregivers. But after being told that I could not support caregivers the way I felt they should be supported, I chose to step down as facilitator. Running afoul of the Association’s “no contact/no advice” rules seemed especially ironic since the Association had praised me for my AD opinions and advice when given as a featured speaker at their annual caregiver conference.
In retrospect, however, leaving my facilitator role may have been another positive step. I decided that my 100th AD article, published last month by Annals of Long-Term Care, will be my last AD article. I have also decided that I will no longer give AD presentations to caregivers, doctors or medical students. If I am no longer facilitating AD spouse caregiver support groups, and no longer writing or speaking about AD, maybe I will be able to move on more easily with my new life.
Joining an internet dating site was very valuable because it helped me clarify the kind of relationship I was seeking. Women on that site were looking for love in long-term serious relationships, but that is not what I want. I’m not looking to “fall in love” again. In my heart, I still am ... and always will be ... deeply in love with and married to Clare. I also know that I can never be in a relationship where I could possibly end up as a 24/7 caregiver ... I couldn’t handle that again. My time on that dating site reinforced that all I want going forward is a “friend with benefits” ... a special woman to be with several times a month to enjoy companionship and a moderate physical relationship ... but nothing more serious than that.
I am taking other new steps to move out of my comfort zone. For example, I’ve signed up for a “Lifelong Learning Lecture Series” given at my local community center. I’ve also started flying again, for the first time in nearly 10 years, and already have tickets for future flights to visit with family and friends. In addition, I’m now checking out some river cruises for summer travel.
In my April/2016 piece in The Huffington Post, “Not Ready to Move On,” posted only hours before Clare died, I wrote that “I want to ... and need to ... maintain my emotional connection with Clare for as long as possible. If that delays my moving on, so be it.” When I wrote that article, despite my strong love for Clare, I didn’t think it would take me too long to move on after her death. After all, I thought, I had already been grieving for nearly three years, living alone, feeling more widowed than married.
But I was wrong. Very wrong. Clare’s death hit me like a ton of bricks. Despite my years of “anticipated grief,” accepting her loss was painful beyond words.
In “Inspirational Thoughts for Alzheimer’s Caregivers, Widows, and Widowers” (AFA Care Quarterly, Spring/2017) I wrote about how Katy Perry’s song, “By the Grace of God,” got me through my darkest moments before and after Clare died. As I battled with depression, anger, guilt, and other emotions, there were many days when I felt as if I were down on the floor and out for the count, questioning if I even wanted to continue living. Perry’s words in that song ... “I picked myself back up, I knew I had to stay, I put one foot in front of the other, I looked in the mirror and decided to stay” ... could have been describing me. Words such as “running on empty, so out of gas,” perfectly expressed how I felt. But Perry also sang, “I am not giving up” ... and those words always won out.
Someone I love very much recently shared with me these words attributed to Rosemary Kennedy: “It has been said, 'time heals all wounds.' I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone.”
Clare’s last few years of life, but especially her death, left me with deep painful wounds and frequent periods of overwhelming sadness and tears. Recent successful steps to move out of my comfort zone, however, have greatly lessened that pain. I feel happier, and less lonely, than I’ve felt in quite a few years. Maybe now I will be lucky enough to fulfill Clare’s final wish for me ... continued happiness.
Note to readers: I haven’t decided yet if I will post new Personal Blogs on this website. If interested, please check back in 3-6 months to see if I have written more about moving on with my life. As always, should you want to comment on what I’ve written and would like me to respond, please email me at email@example.com.