May 2019   
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Alzheimer's and Me

We can read stories and books written by experts we do not know and learn much about the disease of Alzheimer's.  But when we can see it through the eyes of a teenager who is experiencing acceptance with a family memeber we do know, the picture becomes much clearer.  I would like to share an essay written by my granddaughter, Madison.  Which even brought new insight to me.   -- Judy Skaar

 

        I have witnessed the effects of Alzheimer's disease as my grandfather lives with this illness. In January of 2017 “Grandpa Jerry” could no longer be cared for at home and was moved into a long term care facility in their memory care neighborhood. This disease has not only affected my grandpa, it has also impacted the lives of me and my family; I’ve learned a lot about myself, my family and this disease since his diagnosis. It is my goal to continue to spend as much time with him as I can, support my family, learn more about Alzheimer’s disease and dementia, and raise awareness to help those affected by these difficult illnesses.

        Grandpa Jerry was always a quiet person, so the slow onset of his disease was not obvious. Small things started to get difficult such as walking, going to the restroom or putting on a shirt. He was becoming frustrated and tried covering things up because it was so hard for him to accept. We noticed that he became obsessed with where things were, easily lost track of his thoughts and wouldn't remember things we would expect him to know. It was encouraging to hear him sometimes express memories or play a song by memory on the piano but these incidents became increasingly less frequent and the condition seemed to get worse as the days progressed. After several falls, research into the disease and long family talks it was concluded that it was no longer safe for my grandfather to be at home even though my grandma felt she could still take care of him. This has been difficult to accept; I have always seen my grandfather as a smart person and an active member of the community. He devoted his career to public education as his profession included jobs as a music teacher, high school principal and school district superintendent. He was also active in community music programs, the Lions Club and served in the United States Army band.

        My life has been impacted significantly since my grandfather’s diagnosis. The largest change in my life was my family move from North Carolina to Wisconsin in 2013. The primary reason for our move was for my parents to live near both sets of my grandparents as they get older. It was difficult to leave friends behind but as I mature I realize the benefits of living close to other family members. It's difficult for me to visit my grandfather in his new residence at the Columbia County Health Care Center in Wyocena, Wisconsin. I feel sometimes that he doesn’t recognize me and it's hard for him to continue a conversation. What also strikes me is that after eighty-four years of living, his life sadly comes down to one small room with very few possessions in a nursing home. I’ve begun to recognize and talk with other residents in grandpa’s memory care neighborhood. Bob, Donna, Frances and the others make sure that I never have a dull moment when visiting grandpa and I’ve learned not to try to turn the television off of their daily routine shows. I’m amazed at how my grandfather can watch television through his closed eyelids.

        My grandmother now lives alone but visits my grandpa daily. I feel sad for my grandma as this is a huge change for her as they have been married for over fifty years. Family visits to Pardeeville, where they live, for holidays and other occasions are no longer the same. Grandpa and grandma’s house now seems emptier and it doesn’t feel the same as it did when I was younger. My dad was able to bring my grandpa home for Easter and Christmas but I fear that won’t be able to happen too many more times. All trips now involve a visit to see grandpa. The nursing home location was somewhat comforting for my grandpa and grandma because they have volunteered there for many years. My grandpa would often play the piano or his accordion for residents. My grandma would chaperone residents on outings, make cookies or help with fundraising activities. It is good to know that he is getting excellent care.  

        During this difficult time I have learned a lot about myself and my family. I have learned personally how fragile life can be and to be happy for the things I have. My compassion for others has increased. I have also seen my family come closer together. This disease that affects “Grandpa Jerry” has forced us to have difficult discussions, spend more time together and take on different responsibilities in caring for grandpa and helping grandma. For example, my dad has helped with their finances, legal assistance and apply for government aid. My aunt has helped grandma organize the house, plan for future activities and insure grandma is taking care of herself during the hard times. I now visit my grandparents more often and communicate frequently with my grandma. “Grandma Judy” has become active on social media in communicating with grandkids and raising awareness for Alzheimer's disease. I also have learned a lot about community support and professional organizations available to offer assistance.

        It is my goal to make good out of this bad situation by helping raise awareness for Alzheimer's disease and dementia. In September I participated with my grandpa and grandma, mom and dad, sister and others from the Columbia County Health Care center to walk in the 2018 Step Forward/Give Hope Alzheimer's walk. This took place in Portage, Wisconsin and was organized by the Columbia/Marquette County Organization of the Alzheimer's and Dementia Alliance of Wisconsin. I also assisted and donated money as my grandma set up a fundraiser for her birthday on Facebook. We raised awareness and over $200 for the Alzheimer’s Association with a “Give to End Alzheimer’s” campaign.

        Alzheimer's disease is a terrible illness and it is my hope that someday a cure will be found. Since my grandpa has become sick with this disease it has impacted me and others close to him. I have learned a lot about this disease and my family over the past few years. Recently my grandma shared with all of us a poem entitled “Do Not Ask Me to Remember” by Owen Darnell. The poem helped me further understand Alzheimer’s disease through the eyes of my grandpa and offers suggestions on how to treat him. What I will always remember is to not ask him to remember, not lose my patience and try not to cry. Rather, I must remember he is sick and lost and can’t help the way he is acting. I must love him ‘til his life is complete.

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