Im happy to share my words from yesterdays Caregivers Conference at UMM. How Can I Hurt When Holding You? The Conflicted Caregiver. (Sweet Caroline plays ...) Isn’t that a great song? It is, because we grew up on Neil Diamond. And now we think of the Red Sox – and a stadium on its feet, everyone swaying and waiting for those wonderful words to shout out – So good! So good! So good! That’s exuberance at its best … a trip to Fenway Park for Red Sox fans, once or twice in a summer, is a high point of the year, a great day to post on Facebook for friends. For Red Sox fans, it’s living the dream. I’m 54. I lost my husband Frank to pancreatic cancer two years and three months ago. I still count the days. I’m still in disbelief that this is the turn my life took, as I continue to rebuild my life. I will tell more about my experience, but the short version is – I am grateful that I had 14 months as a caregiver. Because what I learned in that short time about living and dying, some people never experience until, say, 74. The experience of being a caregiver provides enormous perspective on how we live our lives – before, during and after – and that’s what I want to share with you today. Here’s how I came to spend the last 13 years living in Washington County. Twenty years ago, I had quite a charmed life. I was single – I had 20 years on my own, between college and getting married for the first time at 43. I was a freelance writer, traveling the world – and I got to 43 countries. Back in New Jersey, my uncle Donald Crane, was living with my grandmother. Widowed with two children at age 35, she kept the farm together and became the New Jersey Farm Bureau Mother of the Year in 1956. She died in 1993 in the same New Jersey hospital where I was born. But before she died – she was in the hospital 12 times over four years. It was hard for all the family members to see her change in her last years, as her once-vibrant life faded into a routine of dependence, and long-distance phone calls, always with the same news: “She’s back in the hospital.” She became cranky, and disliked doctors, and refused to follow directions. She didn’t care if she got enough nutrition each day, or not. My uncle was with her every day of those four years. I remember thinking from a distance at the time: “How can he do that? – I don’t think I could do that.” To this day, and my uncle is 78 now, he says of the time: “It was the hardest thing I ever did in my life, but I never wanted it to stop.” That’s hard to believe, if you haven’t walked in the shoes of a caregiver. After my grandmother died, my uncle moved to Washington County. I came here for his wedding in 1998. I moved here in 2001, and got married myself. Frank Cassidy became my world, for the 10 years we had together. Many of you know my story of the last three years – how Frank got sick, and died, how I was his caregiver and how in the year after he died, I ran for state office and got elected to the 126th Maine Legislature. I asked to sit on the Health and Human Services Committee, because of my experience as a consumer of health care in Washington County. After Frank died, I sold our house in Machias and moved to Lubec. I could have chosen to move anywhere – and change my life again. But I chose to stay here, because of the community that we experienced during Frank’s illness. Since college I have lived in Florida and Colorado and California and Wisconsin and Maine, in that order, and never knew community as we have it here. We are unique, a world apart, because we care so much for one another. When Frank got sick, I had no idea what was ahead. I had no idea that I would become the caregiver. For the first few weeks after his diagnosis in November 2010, I used the word caretaker—because I didn’t know there was a world of caregiving. When we have to step into this world, there’s no road map. There’s no Google search. No one tells you, This is what will happen; this is what you need to know, or this is how you will feel. You learn it day-by-day, or night-by-night. You will be tossed about in a world of darkness, and self-doubt, and fear. You will lie awake wondering what will happen the next day. The times in the middle of the night are some of the times I remember most. My most personal moment of despair came a year into Frank’s illness. It was a night at home in early December, when Frank was in so much pain that I had to give him a shot of morphine. It was after midnight. The visiting nurse had given us a box of medicine to keep in the refrigerator, in case we ever had to use it. I wish we never had to. I wish I never had to break the seal, and follow the directions, and fumble with the syringe when I was crying so hard. I couldn’t do it. I couldn’t give my husband the shot of morphine he so desperately needed. How can I hurt when holding you? That was my breaking point. It was also my turning point. I realized I could not help him at home any longer on my own. So we got him to the emergency room, and within days he went into hospice care. We were fortunate that Frank had served in the Navy 40 years earlier, and the VA covered all of his medical costs. We had been driving once a week the three hours to Togus, the VA hospital in Augusta, for more chemotherapy. He had hugely resisted turning to the hospice at Togus from the first suggestion a few months earlier. “Katherine needs it more than I do,” he would tell any professional who raised the idea. This time, when it really was time to go, he sat on the sofa in our living room for the last time. Then he asked me the hardest question I ever had to answer. “Are we going to hospice now?” he asked. “Yes, Frank,” I said. “Am I going there to die?” “Yes, Frank.” All I know is that, as Frank got weaker, I got stronger. It was because the caregiver inside me, had asked for help. We cannot begin to imagine the emotions that a loved one goes through when he or she knows he is going to die. And we can’t know the emotions that a caregiver goes through, either – until you are on caregiving’s doorstep, in the moment. You don’t know what choices are ahead. In my case, I didn’t have a financial choice to make, of continuing to work or not, because I wasn’t working at the time. Frank qualified immediately for Social Security Disability, and we lived off that for the duration of his illness. He also had his strength and his health for some time. Most people diagnosed with pancreatic cancer die within three to six months, because it shows so late. Frank lived 14 months, and I believe that was because of our love for one another, and all we could do together. We went across the country, and we also went to Scotland. I am proud to say that our 14 months of Frank’s illness were the best 14 months of our marriage. Remember my uncle? He’s Donald Crane of Harrington, and but for a medical appointment, he and his wife Berta very nearly were here in this room today. When Frank was in hospice, Donald was with me for his last 10 days. Frank had been given his last rites, but he wasn’t ready to go; it was 10 more days before he died. Let me show you a TV clip from January 2012. (Film of Don Carrigan and the Ukuleles at Togus). wcsh6/news/article/185741/314/Ukulele-serenade-honors-dying-vet -------------------------- We all love the UMM Ukuleles – because they are all about community. My personal definition of community is – the way we get by. Community got Frank and I through the toughest times of our lives. Community is why I ran for the Legislature; community is why I still live in Washington County – because Washington County is a community of caregivers. If an individual or family in our town goes through a hardship or a tragedy, we all turn out for the benefit supper, even if we have never met them before. If we are called upon to take on the role of caregiver – it will likely become the hardest job we will ever love. And in the year or two after, after the images fade of the moments of pain, or dying, and as those are replaced with memories of moments across your years together of laughing about the little things – the caregiver experience really can be So Good, So Good, So Good! Thank you, friends. (THEN: Gene Nichols and Lori Schnieders appeared, ukulele and bass, to play Sweet Caroline, and the audience clapped and sang along).
Posted on: Sat, 05 Apr 2014 13:49:11 +0000