Sharon’s son, George & Matt’s wife, Betsy
1/1/2020……. Betsy lost her husband, Matt, due to Alzheimer’s disease on the same day I lost my mother, Sharon, due to Parkinson’s disease. It has bonded us together for life. We wanted to share our thoughts and ideas on tough topics in caregiving and send thoughts and prayers for others diagnosed and caregivers, so this BLOG was created in their memories.
The Tackling Tough Topics BLOG 6: Caring……..The difference a loved one makes in your journey.
6/1/2024
This blog is dedicated to all those caretakers who care for a loved one with any disease and to those who have been diagnosed. We hear you; we see you, and we will never stop fighting until there is a cure!
Sharon’s son, George:
This topic is critical to me because I was my mother’s caregiver for the final four years of her life. She was diagnosed with Parkinson’s disease. My mother sacrificed so much, bringing me up, and I would not be the man I am today if not for her. I was up for any challenge to be there for her. She was a single mother of two and lived independently until the final four years when PD took over rapidly.
I have always wondered about the differences between a caregiver, caretaker, and care partner. They all play a vital role. Some can play various roles, and I consider myself going through all three stages at some point in time:
Caregiver: Caregivers are often skilled nurses, home health aides, or physical therapists, but they can also be friends and family members who are trained in caring for a specific incapacitated person (BraunAbility, 2024)
Caretaker: Caretaking also involves taking care of a person, but often caretaking creates a strain on the individual providing care for another. Caretakers don’t put their own self-care first and can burn out or overextend themselves easily (BraunAbility, 2024)
Care Partner: This term denotes an agreement between the person with a chronic condition and their loved one to be partners in care as best as they can. To help each other with health, wellness, and caring for each other. (Robb, 2017).
My mother told me many times that have, as a loved one makes a difference. I was shocked when a nurse told me, “It is amazing what you are doing for your mother,” and I replied, “I would never let her go through this alone.” The nurse told me many did not support their loved ones, which shocked me. So, I fought on holding her hand and by her side through the good, bad, and ugly. My mother did not have a partner to help her, and the rest of the family could not devote the time needed. I worked several jobs and had my own family to also care for. It was a challenge at many points. Some days, I went through grief, depression, anxiety, and loss of hope, but I never showed it when I was with my mother.
I had to be vital for Mom. The most challenging part of caregiving was the unknown. We were told many times by the medical profession that “you do not die of PD; you die with it,” which baffles me still today because my mother had no other health issues. She did have late-onset dementia, which came in the final two years of her life. She passed at the young age of 69 years old. In 2024, I believe many will live well beyond their 80’3. I had already purchased a new home to move Mom in with the family, but we had never had that opportunity unfold.
My mother asked me to swear we never put her in a facility and always have her in her home. I respect anyone’s decision, but I swear it to her. So, we tried our best. We bought a house to be closer to Mom, but she only enjoyed it the final year, and even then, her health declined so rapidly that I do not think she ever had the chance to love it. My goal was for her final ten years of life to enjoy the backyard with her three grandchildren and the lake she often spoke of.
We also incurred many expenses, including medical, living, food and groceries, car bills, home mortgage, and the toughest, over $12,000 per month on caretakers who honestly had no experience with PD, and that was another story for another time. Despite it all, I would do it all again.
Being by her side brought her comfort, and although I sacrificed my own health at times, she needed her loved one there to support her.
Matt’s wife, Betsy:
Being a caregiver to my husband, Matt, transformed me into a different person! I say Alzheimer’s Disease took Matt away, but through Matt’s journey, I discovered my voice and my gifts, which I use to help others.
I never imagined that I would do videos in my car discussing caregiving and bringing awareness about Early Onset Alzheimer’s. I videoed Matt’s journey, showing the good, bad, and ugly sides of Alzheimer’s. I never saw myself as a leader or inspiring others!
Matt was my inspiration and catalyst for sharing my caregiving experiences, discussing what caregivers go through, and starting a support group so no one should ever walk this journey alone during or after caregiving! I couldn’t let my anger or Alzheimer’s defeat me, so I turned my anger into a passion.
I am incredibly grateful that Jeanne White, Station Manager of PWTRN, discovered me. I never thought I would be interviewing people about all different topics. I promised Matt I would continue, which is what I am doing! I want people to know about resources to help them in their caregiving journey, even if they aren’t caregivers!
Matt’s journey has touched many people, for which I am very grateful! Matt’s journey showed me my strengths! I am so very honored and grateful to do what I do! I also want to mention my son, Josh, who was an excellent caregiver for his dad! Josh and I were a team. We can teach our children valuable life lessons from caregiving! I am also grateful to have been Matt’s wife for 39 years!
I want to dedicate this blog to Matthew Sloan.
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George’s Biography
Dr. George Ackerman is from Brooklyn, N.Y. He now resides in Florida and works in the fields of law, police, and education. George lost his mother, Sharon Riff Ackerman, on 1/1/2020 due to Parkinson’s Disease.
George wanted to honor his mother and continue to help in the Parkinson’s awareness cause, but he did not know how to bring about change. With my family, we started TogetherForSharon® to keep my mother, Sharon Riff Ackerman, ‘s memory alive and share the message of Parkinson’s Awareness and hope for a cure.
Today, https://www.togetherforsharon.com/ reaches thousands of individuals across the country to raise awareness of Parkinson’s disease. George currently interviews individuals throughout the Parkinson’s community, including various foundations, caregivers, and Parkinson’s warriors, to help share their stories and causes.
Betsy’s Biography
Betsy Wurzel graduated from Middlesex County Voc-Tech High School, where she received a License for Practical Nurse training and a diploma. Betsy has worked in various hospitals and a state facility caring for severely disabled clients.
Betsy began her advocacy when her husband Matt was diagnosed with Early-onset Alzheimer’s and was disappointed and frustrated with the medical community. Betsy created and founded the # Kick Alzheimer’s Ass Movement Group on Facebook in February 2019, so no one should ever walk their journey alone during caregiving or after caregiving!
Betsy was discovered by Jeanne M White, who is the Station Manager of Passionate World Talk Radio, in June 2018. Betsy talked weekly on Jeanne White’s Caregiver Connect series and encouraged other caregivers to share their stories. Betsy started Chatting with Betsy show in September 2019. Betsy wants people to know there are resources to help them and they are not alone! Chatting with Betsy covers a variety of topics. Betsy was nominated for the Caregiving Visionary Advocate Award in Nov 2021 and received the award!
Matt was and will always be my inspiration for all I do!
References
BraunAbility (2024). Caretaker vs. Caregiver: What’s the Difference? Retrieved from https://www.braunability.com/us/en/resources/caregiver-resources/caretaker-caregiver.html
Robb. A. (2017). How are the Terms Care Partner and Caregiver Different? Retrieved from https://parkinsonsdisease.net/caregiver/care-partner-and-caregiver-differences