Why I Walk… George’s Story

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

Why I Walk… Debbie’s Story

On July 30, 2019, my mom passed away after an 8 year battle with Alzheimer’s Disease. I watched her go from a smart, loving, out-going person who loved to read, have lunch and shop with her girlfriends to being unable to independently eat or speak coherently.

While I lost my mom in 2019, my grieving started long before her death. From the time my father passed in 2009, my mom lived with my husband and myself. We were so very excited for this as she and I had many plans of doing so many things. And we did, in the beginning. Mom loved to go to the casinos. She could play a machine for hours and we’d take an overnight trip often. Or she would fly or we would drive out to Philadelphia to visit her family or go to FL to see my sister. Reading was a passion of mom’s. She could start a novel and read all night just to get it finished and start the next. She loved to clean and kept a home that was beyond immaculate. Over time, all of this stopped.

I noticed after my dad died, mom changed. I couldn’t explain it to my family and friends, she was just different. While mom would repeat things often, her memory was just not there. People would tell me she was mourning the love of her life and couldn’t get over it, “give it time” they all said. Slowly, she was gone. There are many people that have life events that loved ones miss because of death. Alzheimers is a disease that robs people of those events long before death. Although we still included mom in everything possible, it became difficult. In 2016 my daughter was getting married. She was good that day, until the evening. Sundowners was horrible for mom. We could set our clocks and know when it was 4p without ever looking as her demeanor changed like flipping a light switch. That year was the year (September 2016) I had to make the decision to put mom into a nursing home. The previous year was particularly hard as I had a bout with cancer. Mom was starting to roam at night, falls were becoming more frequent, and the incontinence was beyond my control. Something had to give. We held on as long as we could, and while the transition was smooth, this killed me little by little. I promised my dad I’d take care of her and now I’m feeling like I have failed both of them.

In the facility mom would attempt to direct people. In the beginning she would go room to room shutting off lights. She would also go behind the nurses station to ‘straighten things out’ or to ‘clean the floor’ (getting down on her hands and knees with a rag).

My mom was one of 13 children. She was the second oldest and the first to be diagnosed with Alzheimers. While there have been siblings that she lost, none were to Alzheimers. In recent years one of her brothers, now 85, is experiencing signs.

This will be my 4th year walking in the Peoria Walk to End Alzheimers. My mom was very aware of Alzheimers and the walk as her best friend’s husband was diagnosed in his 60’s. She supported the cause and found it to be so very sad. In 2017 mom was going to walk/be pushed in the walk. Her day was extremely bad and there was no soothing her, it broke my heart. We had a great turnout and we walked in her honor, including girls from the nursing home that cared for her.

To hear the word Alzheimer’s doesn’t always resonate like other words/diseases do. If you hear the word stroke, you may think of rehabilitation or the inability of doing something, but not death. Cancer, that person could die or with treatment they could be saved. When someone tells you a member of their family has Alzheimer’s most people don’t think of death. NOT true! Being diagnosed with Alzheimer’s will not take that life, but the complications of the disease will. In my mom’s case her body started to break down and she passed away from a bowel obstruction as she could not have it repaired, she would not have survived the procedure. Over 8 years she lost her sense of trust becoming paranoid, she lost her ability to recognize where she was or who we were. She could not recognize words and could not read. People do not understand what a slow, horrifying process Alzheimer’s is for both the person with the disease and the family.

For years I walked in the Susan G Komen fight for breast cancer and would become emotional when seeing all the pink. However, until I experienced it first hand with my dad having breast cancer and carrying a banner for mens breast cancer awareness, I hadn’t experienced it on that emotional level. It is the same with Alzheimer’s. I heard about others, saw it from a distance, yet until I experienced it first hand it did not have the impact as it did when it affected our family. At some point you will be affected by this horrible disease. In walking I have carried an orange flower to show support, a blue and yellow flower showing I lived with and cared for someone and for the second year I will carry a purple flower for the loss of my mom. My heart cries often for my mom. I hold her laughter and memory in my heart and pray daily that one day I will see a white flower held high, knowing that no family will ever again have to walk the path our family has and that there would be a survivor among the crowd!

This is why I walk …

Why I Walk… Joanne’s Story

Grandma Attig was always fun to be around and always busy doing something. She had a very bright smile and great laugh that was infectious.  She loved sewing, quilting, reading and was still active outside and mowing the yard with the help of one of her many granddaughters!  I remember when she started “being forgetful” but we all thought it was just part of aging.  A couple years down the road she would be at home and had become very paranoid that someone was out to get her.  Seeing someone you love acting this way and going through that is not easy to deal with.  We didn’t know how to help Grandma and my Grandpa was still caring for her at home and I know it just broke his heart seeing her like that.   She eventually had to go to a nursing home to get the care she needed.

She was there almost 7 years before passing in December 2016.  I remember visiting her when I was home. She couldn’t speak to me but I held her hand and talked to her.  My kids would come with me and would tell her what they had been up to.  I remember the nurses telling me that she lit up when she heard Grandpa’s voice. He would go in every Sunday and visit with her as well. 

This is why I walk.  My family hadn’t dealt with Alzheimer’s before this and didn’t know of all the resources out there to help the patient as well as the family and caretakers.  I think it’s important for people to have resources available and know where they can go to get them.  By walking, everyone involved helps to spread that word and raise awareness.  I have also done my best to raise funds each year to aid in the care and research of the disease.  My kids and family understand the importance as well and all pitch in to help with bake sales, waiting tables and other activities to raise funds for our team each year.

To honor my Grandma Phyllis Attig, I have carried on her quilting tradition and have made a unique and somewhat original quilt for the last 4 years that I raffle off. This year so far, I have raised over $1300 with the quilt.  Each year, some of her fabric is used in it so it has a very special meaning to me.   My family, friends and coworkers have been great supporters of me in all that I have done, which in turn helps spread the word about Alzheimer’s.  I hope that there is a first survivor in my lifetime and that is what I work towards.