At the end of the summer, I had the chance to present at two town hall meetings in Washington State that were hosted by the Alzheimer’s Association of Western and Central Washington, a Voices for Better Health state partner. I was excited to explain how the dual eligible demonstration projects for integration of care for people with both Medicare and Medicaid were unfolding across the country and in Washington State. As I listened to the stories of caretakers and people living with Alzheimer’s, two phrases resonated with me and evoked powerful memories of my own family’s experience caring for a loved one with this disease.
“Take care of you,” was advice given by a man who was caring for his wife. He described things he was doing to make sure he could provide the best care to his spouse, which included attending a support group for caregivers, hiring more help at home and volunteering at the local high school to maintain a vibrant connection to his broader community.
I thought about my father-in-law, who was one of his mother’s primary caregivers during the last few years of her life. By the time I met her, Patti’s* Alzheimer’s had progressed to the point that she could not be safe staying at home alone. While she knew some English, her primary language was Tamil. If Appa* wanted to attend an event or go to work, he needed to make sure he had someone to take care of Patti. It was impossible to find someone who both spoke Tamil and had the ability to take care of her complex health needs. He chose one or the other, depending on who was available on a given day, and how long he needed coverage.
Another speaker said that she “focused on the now” in taking care of her husband. She tried not to worry about or focus on what was going to happen down the road. She did things to enjoy the time she had now with her spouse.
Appa and his siblings spent many moments being present with Patti. In May 2011, my partner and I began planning for the arrival of our first child. Part of our preparation process was to schedule visits for grandparents to be with us and get to know their new grandchild. While my parents could fairly predictably arrange their work schedules to have time off, Appa coordinated with his siblings to have Patti’s care covered. Implicit in his planning was the understanding that the length of his visit might need to be adjusted on very short notice if Patti’s condition were to change.
A universal theme in the town halls was a message that living with and taking care of someone with Alzheimer’s is complicated and scary. So much is unknown about how and how quickly the disease will progress; so much is difficult in trying to create a safe space to function when Alzheimer’s is in your life. So much is challenging about building a bridge between the smaller world you try to create, in which your loved one is cared for and safe, and the wider community you strive to remain part of. So much is sad about asking for and accepting help without feeling like a failure.
When our daughter was three months old, we went to visit Appa and Patti at their home, out of state. While Patti had to be reminded of who we were, the unmistakable love apparent in her expression when she looked at her newest great-grandchild did not show any traces of Alzheimer’s disease. When we look at the picture of four generations of family members taken on that visit, we feel lucky to have had this time with her.
At the town meetings – and most every day – I am reminded that underneath the policy and logistical intricacies involved in designing and implementing the dual eligible demonstration projects, they are, at their heart, about improving people’s lives. And, in many instances, this includes giving people the ability to live lives that are not consumed with trying to navigate a complicated and frustrating health care system. Delivering health care that is coordinated and integrated makes it much more possible for involved family members to take care of an ailing loved one, “take care of themselves,” and feel well-supported enough to be “focused on the now.”