Last year, my husband, Jim, lost his 7-year battle with early-onset Alzheimer’s disease. He was just 53 years old. It hurt to spend the holidays without him. But as I reflect on the most difficult year of my life, I’m filled with gratitude for all those who find the strength to keep fighting this devastating disease.
I am thankful for those fighting so hard for critical research funding, including UsAgainstAlzheimer’s, and for researchers who are in the trenches trying to find a cure. It must get frustrating going to work each day when for every step forward it seems there are ten steps back. Not only are they working to find a cure, they must worry about funding for their research and support for innovative ideas. Let’s not forget, people thought injecting the body with “poison” (chemotherapy) was crazy. Yet it saves lives every day. Sometimes innovative – even crazy – ideas end up being the sanest and best solutions.
I am thankful for the many advocates who contact their members of Congress demanding solutions for Alzheimer’s and other dementias. It isn’t easy and can be intimidating to meet with those in power. I am grateful that so many people take that brave leap and share their stories of heartache and despair, their feelings of being lost in a system that doesn’t provide enough support, and admit out loud the overwhelming burden their loved one with Alzheimer’s has become. Nothing will change if we don’t speak out.
I am thankful for the caregivers who feel like they can’t manage another day and instead of quitting, keep doing the best they can. Sometimes just getting out of bed and dressed feels like a major accomplishment. Yet, these super humans find a way to care for loved ones who might not even acknowledge the sacrifices made or know who they are. It can be a thankless, exhausting job with few rewards. I extend my sincerest thanks to each person who doesn’t give up or give in to the stress and sense of doom.
I am thankful for surviving this part of my life so that I can enjoy watching my children grow and be part of their lives. I think of those who aren’t so lucky, including Jim, and I am overwhelmed with gratitude. All Jim wanted was to live long enough to see his children grow up. Being there when they graduated from high school was at the top of his bucket list. Not college - he didn’t want to push his luck – just a few more years to watch them walk across the high school stage. I live with the guilt of having survived. But I also feel the miracle of being part of their world.
I am thankful that my parents are alive and able to help me with the kids. Having their guidance and support is my saving grace. Words cannot do justice to my gratitude that they are a huge part of my young children’s lives.
I am thankful for the friends who haven’t disappeared. I am thankful for the respite programs that provided a break when Jim was sick but still living at home. I am thankful for the hospice team who worked long hours to ensure that Jim’s passing was peaceful. I am thankful for understanding teachers, devoted neighbors and the strangers who offered help. We are surrounded by goodness – sometimes it may seem hard to find, but it is there.
Finally, there are no words to describe my gratitude for my husband, Jim, who showed us how to live with Alzheimer’s with great dignity. I am thankful that I can share our story and in return, help others. I am eternally indebted to Jim for encouraging me to share honestly what was happening with him and our family in the hopes of making a difference. He knew it was important and cathartic for me. Also on his bucket list was helping to find a cure for Alzheimer’s disease. Sadly, we couldn’t accomplish this before Jim passed away. But I intend to keep my promise to him that I will not stop until there is a cure. Not just a treatment, but a cure. Our children are at high risk of succumbing to the same disease that took their father. And I intend to keep fighting for them and the millions of others who face this devastating disease.
Karen Garner is a passionate Alzheimer’s advocate dedicated fighting for a cure and being a voice for those who cannot speak up about the lack of care and support for Alzheimer’s families. Karen writes the blog Missing Jim.