is fundraising to honor:
her mother, Sallie Jensen
DONTATIONS MADE ON THIS PAGE WILL CONTRIBUTE TO SALLIE'S TEAM. PLEASE MAKE CONTRIBUTIONS TO SALLIE'S TEAM ON THIS PAGE.
Over the last year, there were two significant events for Mom:
1) The nursing home she was living in, which promised us from the day we moved her in that the memory care unit would be the final place she would need to live, decided that she now required "too much care" for the memory care unit. With 5 days until they were planning to move her down the hall to a skilled nursing unit, a unit without experience in memory care/Alzheimer's, we had to find a new, suitable place for her to live.
As we reached out to other Alzheimer's nursing homes, we found that many nursing homes will not accept someone who is as far along in the disease as Mom is. In the end, we were very blessed to find an outstanding nursing home that specializes in Alzheimer's and it truly is better than where she previously was. This incident was one of those appearingly disasterous moments that left us better off than where we previously were.
2) After almost 1 year on hospice, Mom no longer qualifies for hospice as her condition is "not declining enough". This turned out to be an exploration into the world of Medicare to try to understand what in the world this means. It's ironic. If they were to evaluate her today, she would qualify to be put on hospice, however, she does not meet the Medicare-defined criteria to stay on hospice.
So the good news is, Mom's condition has not had a significant change in the last year. She is comfortable and her new living conditions are very favorable. Losing hospice however takes away regular social worker visits, clergy visits, Medicare supplied hospital bed and wheelchair, financial support for all costs associated with Alzheimer's and other benefits that I'm likely not thinking of right now.
More ironic is that these two events seem to contradict each other. Between government regulations and the business of health care, the existing policies and procedures do not seem to understand how to even care for our loved ones with Alzheimer's. Neither the nursing home nor the hospice workers (via Medicare) had any regard for the disruption in my mother's life and care that these two events caused. They were simply doing their job. This is just one of many examples as to why we need to find a cure for this disease.
Today, 5.3 million Americans are living with Alzheimer's, including an estimated 200,000 under the age of 65. By 2050, up to 16 million will have the disease. Please help us find a cure by making a donation today.
Mom was put on hospice this year. I always thought that hospice meant a person only had a few days to live. That's not quite the case. Hospice is for individuals that are terminally ill, and Alzheimer's patients fall in that category. Some Alzheimer's patients continue to live on hospice for up to 3 years or so.
She can no longer feed herself nor is she mobile on her own. She is confined to a wheelchair and there is actually nothing that she can still do on her own. Some days, she can string multiple words together, but they do not form a comprehensible sentence. Other days, the words are garbled cannot be understood.
I've now realized that she is living longer with Alzheimer's that most patients do. It has been about 12 years. The typical duration with the disease is 8-10 years. By coincidence, I am creating this page on her birthday in 2014, July 13. She turned 74 today.
SALLIE'S STORY (2013)
I formed this team in honor of my mother, Sallie Jensen. My mother started showing signs of Alzheimer’s when she was about 62. She just turned 73. It started with her asking the same question over and over, forgetting she had already asked the question. “What happened to your finger? Why are you wearing a band aid?” “I cut it, Mom, but it doesn’t hurt.” “Aw, that’s too bad.” Thirty seconds later, “What happened to your finger? Does it hurt?” “No, mom. It’s just a cut.” “Aw, that’s too bad.” Twenty seconds later, “What happened to your finger?”… you get the idea.
It was obvious to me that something was happening to her because her brother, Dick, passed away from Alzheimer’s at age 59. Some doctors in the medical community, apparently, are hesitant to give a diagnosis of Alzheimer’s. She has never been technically diagnosed; however, the doctors do not hesitate to prescribe her all of the memory-saving medications and she is quite popular in the Reminiscence (aka Alzheimer’s) unit of the nursing home where she now lives.
The disease is progressive. Over time, she lost her driver’s license after a fender bender where she seemed confused to the responding officer. She couldn’t keep track of dates and times. At a time when she could still dress herself, she did not know what clothing was appropriate. She put a wool sweater on when it was 90 degrees outside or she would put her shirt on like pants, putting her legs in the sleeves of the shirt.
Leave it my mother, her social skills were one of her last to go. She could go to a cocktail party and pull off a casual conversation, where someone who didn’t know her that well would have no idea there was anything going on.
It got to the point where she didn’t know what to do with herself during the day. My recently retired father would try to keep her occupied. About 5 years ago, we found an adult day care program near my parent’s house, which was a real treat for both of my parents! My father could have some free, quiet time during the day and my mother could have some activities to stimulate her brain and give her something to do.
Almost 4 years ago, the daily struggles of life started taking a toll on both my parents, and we made the excruciating, but realistic decision to move my mother into a nursing home. Here, she receives skilled, experienced care 24 x 7. So when she regularly wakes up for a midnight snack, my father doesn’t have to come down to the kitchen in the morning to find the remainders of the ice cream carton on the counter, completely melted. Or find a half eaten cookie stuck in the tub of butter in the kitchen cabinet.
I blame Alzheimer’s for my father’s death in 2010, as he was so worn down from having to figure out what to do to care for my mother, that when he got an infection, his body could no longer fight it. It is common for a caregiver to die before the Alzheimer’s patient does.
Alzheimer’s is a fatal disease with no known cure. (There are medications to slow down the progression of the disease, but nothing can stop it.) Eventually, the brain stops being able to tell the body how to function and the body just shuts down, if the patient makes it that long. The patient can often die before that for various reasons, one of which is not being able to express when she is in pain or sick and therefore not getting timely treatment.
Every day is different with an Alzheimer’s patient. Some days, my mother lights up and is happy to see me. Other days, it’s not clear she knows I am there.
We are trying to reach a team fundraising goal of $2000 for the 2015 Walk to Remember on September 27. Even a donation of $10 can help us reach that goal. Whether or not you can donate, please plan to join Sallie’s Team on September 27 for the Walk at Montrose Harbor.
I always like to know how the money I donate is spent. The Alzheimer’s Association states that in the fiscal year of 2011, 73% of funds raised went toward mission activities; the remaining 27% support general management, fundraising efforts and administration.
HOW CAN YOU HELP?
1. Sign up to join Sallie's Team and walk on September 27
2. Make a donation to Sallie's Team on this page
3. Recruit other participants for Sallie's Team (friends, family, co-workers, etc)
The Power of a Donation
The dollars you raise fuel the care, support and research efforts of the Alzheimer's Association.
Add your name to my donor list today!
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