I have written some variation of this story several times over the past 5 years. I feel that I have written this with a diminishing sense of naivete with each iteration. I so desperately wish that were not the case. Joining the Walk was my sister Karen’s idea. She was the original Team Captain for team FourFran. It consists of Karen, myself, my younger sister Susan, and my brother Patrick at its core. Our mother, Frances Brower was diagnosed with Alzheimer’s back in 2011. I think. We had been trying to get her to see a neurologist for a few years, so I am not exactly sure on the start of this timeline. We just knew that Mom’s decline had become very noticeable.
Frances Brower was then center of her family’s universe. She had a very strong sense of family that had us all around on any excuse to gather. We were always to be at her house. Birthdays holidays, Sundays. Whatever. She would cook and we would show up and eat. She came from a large Italian family, and that is what you did. We never thought about what we were doing for any holiday. We were going to mom & dads. No discussion. You just knew you had to be there. But now, we had to start taking parts of these gatherings from her. She would become confused, forget what she was doing, or what she had done, and then just go to sleep. She would wake up with very little recollection of what had transpired before she slept. We pushed for her to see someone. She resisted. When she finally relented, she lied to us about what was discovered. Then forgetting that she didn’t want to know, she told some of us, and got mad when she then “discovered” we knew. This was the new reality with which we would now prepare to live out with her.
In January of 2013, our father suffered a major stroke. He came through, but not at 100% of where he used to be. He can still drive and get around, but it became clear to us that the house was too much for them both and he could no longer look after her as he had planned. We had to sell the house and move them into an assisted living facility. Our world had shifted again. We would still go see them every Sunday, but by 2015 mom was in a memory care facility and dad was on his own for the first time in forever. The center of our universe was fractured. Not really understanding how to support mom anymore, Karen saw a sign for the Walk to End Alzheimer’s in mom’s building and thought we should sign up for it. As a whole, we hate fundraising. We are not comfortable putting our hands out and asking for money. But this was for mom. We decide that the Naperville Walk was the best location (we live in Bolingbrook, Westmont, Crestwood and Chicago). We found ourselves doing things we never thought we would do, to get money. We also started educating ourselves more on the disease. The more we learned how badly this would end, the more determined we were to get as much money as we could. We told everyone this would be a one-time thing. It was emotionally draining. We were uncomfortable learning about what awaited mom (and us). We were uncomfortable trying to raise more money. But we did it. We ended up being the top fund-raising team that year.
The following year, true to our word, we did not return to the walk. We were also busy trying to get mom into a facility that excepted Medicaid and then find housing assistance for dad, because we had burned through all their savings at private pay facilities over the past 3 years (ask me sometime about having to move them several times – it’s too much to go into here). We got mom into a nursing home and spent 19 months getting her approved for Medicaid (that is also too much to get into here).
It was during this time that I decided I needed to do more. Not just for mom, but everyone’s “mom.” I cannot adequately express my anger at how Alzheimer’s takes away someone’s life while they are still living it. We watched mom get further away while she was right in front of us. So, I told my brother and sisters that I was joining the walk again. Even though we told family and friends we would not keep asking them for money, I didn’t know anything else as effective as fundraising, so I broke my promise and signed up. My family followed. And they have followed every year since.
Last year I volunteered on the Walk Committee. I worked outside my comfort zone. Again, this was not just for our mom. We knew that nothing we would do could bring her back from where she had progressed in this disease. We hated how this made us feel. We were saddened by the vacant look in mom’s eyes when we called her mom. After a while she stopped responding to “mom” and would only turn our way if we called her Frances. Still, we sat with her every Sunday like always. But now she couldn’t talk. Worse, she could not sing. She had loved to sing. We would play music and sometimes it seemed like she didn’t even know that anymore. She could not walk or function on her own anymore. She just sat there, staring at the TV. And we kept raising money. Year after year. Because we cannot bear to see other families go through this. It hurts. And then it hurt worse.
This year I was serving as the Co-Chair for the Naperville Walk to End Alzheimer’s. In mid-March, the world shut down. We were cut off from our mother. No more Sunday visits. The infection rate at her nursing home kept rising. Then the death rate. But mom was hanging in. Updates were sporadic, but all were positive. I got a call around 5PM on Friday May 29th. We could come and see mom. I was elated. We were being allowed to visit again. That joy was short lived. I misunderstood the nature of the call. They were telling me to gather the family and they would let us in for a short visit to say goodbye. She had taken a turn and there was no telling how much time she had left. I had not seen my mother in 10 weeks. My siblings and our father gathered in her room. We were temperature checked, masked, gowned and gloved. We were not supposed to have more than two in at a time, but you could not keep us out. If this was it, we would meet it the same way we met every obstacle this journey threw at us, as a family. We were able to visit for two hours and once we left, that was it. We would not be allowed back in.
Shortly before noon on May 30th, all alone in a room, mom gave up her fight against Alzheimer’s. Now our fight continues. This was as terrible an ending to her life that I could have imagined. We still have not been able to have a full memorial service for her. I feel like I have failed in giving my mom the closure she deserved. I cannot allow this failure to happen to others. My anger had taken a back seat to sadness, but the anger did not go away. Mom deserved better. Everyone afflicted with Alzheimer’s and dementia deserves better. We thought we had prepared for where this disease would bring us. We had not counted on it happening during a pandemic. It just seems so unnecessarily mean to have this hurt so many people so much more.
My family has represented the yellow flower for four walks. Now we hold the purple flower. We want to be here when someone finally raises that white flower. Then we will know that not everyone has to go down this same path. Then we can show others that we do not just offer kindness, caring and understanding. We want to be there when we can offer hope. These walks raise awareness in our communities. More awareness helps us raise more money. More money provides for more care, for those afflicted and help for those who care for the afflicted. More money funds education for caregivers and the general public. Education brings understanding. Understanding aids research for a cure, which requires more fundraising. That research will bring us to the day that the white flower goes from dream to reality. This is why we walk.
– George W Brower 2020 Naperville Walk to End Alzheimer’s Co-Chair FourFran Team Captain
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