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Why I Walk With Diana Lumley

18 Oct

Why I Walk Wednesday- Diana Lumley

My first connection with Alzheimer’s was with my maternal grandmother.  My grandmother passed away in 1996 at the age of 82 after having the disease for 7 years.  I was working in Northern Virginia at the time and only made it to the Shore 3-4 times a year, but I became very familiar with the disease.  The repeated conversations over and over and over again. Grandma not knowing who anyone was or where she was living.  Her primary caregivers were my grandfather, his sister, and my mother.  Due to my Grandmothers illness, my mother and I had many conversations about what we would want to be done for us should we also be diagnosed with Alzheimer’s.  My mother always told me that she did not want me to have to care for her 24 hours a day should she become like her mother.

My mom, Barbara, made a modest living but she saved, invested wisely and planned for a future with the possibility of Alzheimer’s.  Barbara purchased long-term health care coverage for her lifetime and the inflation waiver offered on the policy.  Mom had a medical/ financial power of attorney, living will and her assets put into a trust.  Mom made sure I had a key to her safety deposit box and knew where all of her important papers were.  Even with the experience with my Grandmother, all the talks with mom, all the preparations that my mother made, it was still overwhelming when it happened.  Our whole lives changed on Wednesday, October 30, 2013.

In the spring of 2013, mom had been diagnosed with a form of dementia called Picks.  Mom had been declining. She had small traffic accidents, so we got her to stop driving. She could not figure out which burner to turn off on the stove or how to put on pantyhose.  The week prior to October 30, mom became almost loopy, losing her balance seeming confused and on October 30 her partner could barely get her out of bed and mom could not figure out how to dress.  Mom’s partner, Wayne, called the doctor and they said to take her to the emergency room.  From that day on mother never walked on her own again.  Mom was admitted to the hospital and stayed there a week.  Mom had a severe UTI, urinary tract infection.  Between the UTI and her dementia, she could no longer walk, write her own name,  have a conversation or tell you her birthday.  I thought the disease would progress slowly like it had been and we would have time to adjust and make decisions, but overnight my world, my mother’s world all changed.

Mom was in the hospital a week and the doctor told me she could not go home. She would need to go to rehab and have around the clock care.  Thankfully I have wonderful friends and family that came to my aid and helped me find the Hermitage. Mom moved into the skilled care side on November 2, 2013, after being in the hospital for a week.  I thought she would be able to move to assisted living, but that was not to be. I was away from my job for two weeks, one week with mom in the hospital and one week making sure she was settled at the Hermitage.  I went back home to Ashburn, VA, did my one hour and fifteen-minute commute each way to Alexandria, worked my 12 hour day, I work retail, and all I kept thinking about was my mom.  I went home that night and thought, I can’t do this,  I need to be with my mother.  I went to work the next day and resigned.  I came to the Shore every week and in the spring I put my house on the market.  I sold the house in June and moved to Parksley in July and that was three years ago.

I visit mom every day.  I help feed her, brush her teeth, comb her hair, wash her face, put on her lipstick, keep her nails painted, and entertain her.  Since 2013 mom has lost almost all of her language skills (she was voted most talkative in her senior class in high school), no longer feeds herself, and can not do anything for herself.  The one thing that mom can still do is laugh and smile.  My mother always said, “when I get up in the morning, I put my feet on the floor and I choose to be cheerful”.  I am very blessed that while mom has lost so much of herself, she is still cheerful. I walk in honor of my mom and in the hopes that one day we may have a first survivor of Alzheimer’s disease.

Diana Lumley
Hermitage Hummingbirds 
Eastern Shore Walk to End Alzheimer’s

Why I Walk- Tammy McCullough & Teresa Sanders

17 Sep

We walk for our grandmother, Georgia Green Johnson and for our dad, Eugene W Johnson, Jr.
Our story starts back in the late ’90s when we lost our grandmother to this horrible illness.
We can remember walking into the nursing home to visit. She would be so scared and in a fetal position because she didn’t know who we were. It was horrible to watch how this illness had taken the strength of such a strong willed woman and turn her into this fragile person. Near her end we had stopped in to visit with her, I said, “hey Granny, it’s Teresa” she looked up at me and as she stared at me she had a tears roll down her face and then she smiled at me. I felt at that particular moment she knew who I was. It would only be a month later she would pass.

In Oct 2010, our father was rushed to the hospital. He had a stroke. It was then our lives would change forever because our dad was diagnosed with Alzheimer’s. For me (Teresa), I immediately went into denial. I actually couldn’t bear to think that this man who was a work horse had this horrible illness. Our dad was the “Jack of all Trades” he had bulldozers, cranes and dredges.. the kind that build bulkheads and widen canals. He even had a fish farm raising red striped bass and catfish. When he was a younger man, he and our grandfather worked on building the Chesapeake Bay Bridge Tunnels (they were involved in the actual sinking of the tunnels and connecting them to the road).
For me, I felt if I stayed away, it wasn’t true. As for my younger sister, (Tammy), she stepped up. She went to all his doctor appointments and would take him to her home over the weekends to give our mother a break. She and her husband went above and beyond to help care for our dad.
As the illness progressed, our mother, his wife of 53 years vowed to keep him home. To keep him in the home he built for her some 54 years ago and had raised their 4 children in.  At this point, I knew I had to start helping, I would go in the afternoon to sit with our dad while mom would do her bus route. It would be sometime later that we would start getting help in the mornings and then later we would receive help in the afternoons. Last year he had another mini stroke which left him really weak.

Tammy could no longer take him to her home anymore due to him not being able to walk very well, so she would stay a night on the weekend to help mom out. By January 2014 things started turning worse with the illness. He would know us one day, the next he wouldn’t and the next day we were much younger in age which would confuse him as to why he knew us but just not at the age we were. By April things were steadily declining.  My father was requiring constant care 24/7. We would have an aid in the morning and the afternoon. I would relieve the aid Monday-Friday and Tammy would relieve me. Weekends were a toss-up on whoever could do what.
At one point, things were so bad that the hospital sent an RN to evaluate him. She told us that we could have until August but felt things were progressing faster than that. What our father did do before he started the spiral downhill in the earlier stages back in 2010, was he put a DNR in place, he released us of the burden to make the decisions of what he wanted…. his wishes were plain and simple. (with that said, that was easier said than done).
Our normal lives were no longer. We were devoted to providing the best care that we could give to our dad. Our homes, our spouses, and our children were set aside because our plates were full. They were supportive of what we were doing for our dad.  It was at this point Tammy, mom, and I knew what the meaning of “his caregivers” meant.
In July 2014, Hospice was called in. Dad was no longer eating and his fluids were consistent to a cap of water every hour until he could no longer drink or swallow. For the most part he was incoherent and unconscious. Then one morning he just sat up as if he was never sick. He looked good, he knew us all but Hospice had told us before this that we would go through what they call “false hope”. It was 3 good days that we would cherish forever….as we watched as he slowly slipped away from us. On August 9th, in his home of 54 years with his devoted wife of 53 years, Tammy and I beside him, he lost his battle to this horrible illness.
We walked last year for the first time. Our team “Forget-me-Nots”. This year we will walk again in honor of our dad.
We walk to raise awareness.
We walk to raise money to help other families and to help fund the research to end this thing.

Why-I-Walk-Wed_TammyAndTeresa

Why I Walk to End Alzheimer’s

4 Oct
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By Robin Sexauer

This year will be very different as I am walking in memory of my father, Robert W. Sexauer.  For the past 10 years I have co-chaired the Yuk Yuk & Joe’s Restaurant Team with Kathleen Peirson on the Eastern Shore and walked in honor of my father with my dog, also known as his four-legged grandchild, Goggles.  After each walk, I was able to go see him and tell him all about the Walk and how much money we raised.  This year I cannot do that. 

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