13. Long Term Care Insurance:
We had an excellent long term care policy that would have paid for Alan’s care in a dementia facility for four years. We bought the insurance nine years before Alan died. The motivation for doing so came from our first-hand experience with Alan’s mother and my father, both of whom had Alzheimer’s. We knew the devastating impact of the disease. After watching the toll it took on family members who cared for our loved ones, we wanted to have the option of a care facility should one of us get Alzheimer’s. Our awareness of our choices was different at that point in our lives. We had never heard of VSED.
When I felt we needed support from caregivers because I couldn’t leave Alan alone in the house, I called our long term care insurance company. It was a challenging process to get them to open the policy. One thing I overlooked was the ninety day elimination period that acted as our deductible. We were required to hire someone ourselves for at least one time per week for ninety days before our policy could go into effect. It took about one month of aggravation to get the company to approve the policy. We had been using a local non-profit caregiver organization that provided us with help once a week for several months. This qualified us for the elimination period, but it took time and persistence to get this approved. Finally, our insurance company opened the policy so we could get the help that we needed.
14. Reach out for help.
When Alan was sick with cancer, he did not yet qualify for help through our long term care insurance policy. I was exhausted and desperate for help. I reached out and called a good friend. Within days, several of us met at my house. The idea of having an electronic calendar (www.carecalendar.org) came out of this process. Our email list was long, and I drew on all circles of contact that I could, including our local spiritual center. I outlined my needs and someone else administered the electronic care calendar. It is very helpful to have another person do this. It is not hard or complicated because the computer program organizes all the information well and posts reminders. But it is the kind of detail that is overwhelming when you are deeply involved in day to day on the scene care. Once my friend posted a need, we received quick replies. Sometimes I didn’t even personally know the people who signed up to help. I was okay with that. I knew that people were kind and responding to our need. We even made new friends through this process.
People want to help. But they usually need to be asked and given some direction. I was deeply touched and humbled when people signed up and showed up to help us during the cancer phase. The saying, “Ask and you shall receive” is accurate. Kindness is. Love is. It’s not about particular people. It’s about the magnitude of kindness and love itself. Reaching out in this way to others, and learning how to ask for and receive help was one of the gems of this entire experience.
15. Identify a marker to start the VSED process.
As time progressed, Alan made the decision to voluntarily stop eating and drinking. As his advocate, my main concern was that he be able to go through the process without suffering. He made this decision about six months before he started the process. He wanted to live as long as he could. Once he reached his own personal marker, and knew that he could no longer able to be engaged in life in a meaningful way, he knew it was time to set a date to start the VSED process. His “marker” was when he was sleeping 16 – 18 hours a day, and no longer had the energy to leave the house and go to services on Sunday at our local spiritual center, he was “done.” This center represented love and community to him. Although it was ultimately his decision to make, I was in agreement with his decision and timing. I felt that he would lose his mental competency within about two more months. I knew he had to be mentally competent in order to begin the VSED process and follow through with it.