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 7: Being an advocate for yourself and your loved ones.
7/1/2024
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:
Being an advocate comes naturally to me. Before I was my mother’s caregiver, I was and still am an advocate for victims of crime. I have always had a passion to help others. I entered the law enforcement field to assist others, and as a reserve police officer, I did so despite danger and sacrifice completely voluntary. Some would think I am crazy, but I found a place to assist those who may not be heard yet, and their voices still matter.
Transitioning to caregiving, I wanted to advocate for a PD cure for my mother. Sadly, we lost the battle on 1/1/2020, but today, I am inspired to keep advocating for those diagnosed with PD and their loved ones who care for them, as well as in memory of my mother and all those who also lost their battle and their families that want their loved one’s memory to live on.
I advocate day and night, and sometimes, I feel my stress and burnout come into play. I need to follow the golden rule of caring for myself and be my advocate first. Many are no good to care for a loved one if you cannot have a positive mind. But anytime I want to take a break, I think of all those suffering due to PD and believe that since PD doesn’t take a break, why should I?
My faulty thinking can be hazardous to my health at times. Lack of sleep, seeing my family, or even time to eat or participate in fitness. But at the end of the day, reaching the world for PD Awareness may bring a cure soon. We need one at the moment.
I recommend first being an advocate for you! Then, you can achieve beneficial success in caregiving for others. Loss of sleep, lack of healthy eating, diet, and exercise may likely cause you to become run down, and your loved one depends on you. I have no regrets, though. I did not want to regret anything I tried with my mother, and we tried everything possible at the time. I regret that a cure was not found in time for our family. However, advocating for my mother and so many others is something I cherish and would do over again in a moment. We still have work to do because we need a cure. My mother’s voice lives on through my advocacy, and I will ensure she is never forgotten.
Matt’s wife, Betsy:
I can’t repeat enough how important it is to advocate for yourself and your family! I also believe in trusting your gut instincts! If you don’t feel peace, please go for another opinion! I had an instinct about my son, Joshua, being developmentally delayed and very sensitive to noise.
I went to the Neurologist, and my instincts were correct! My first Pediatrician for Josh told me I was overprotective, and Josh was lazy! It took 13 years to get the correct diagnosis of PPD-NOS Not Otherwise Specified. I had to advocate for Josh to go to a private education school after his 8th-grade graduation! Don’t worry about what others think of you or your situation!
I had to advocate for my health issues when I was having awful pelvic pains for 2 weeks every month! I finally went to my Primary Care Physician because the Gynecologist didn’t believe me!
I had a pelvic ultrasound, which showed an endometriosis cyst and other cysts on my other ovary! Thankfully, I had this ultrasound done and had surgery! I had to advocate for my mom-in-law for Matt to realize that his mom was having problems. Matt’s mom had Alzheimer’s. There wasn’t much information available in 2000.
From 2010 until January 1, 2020, I had to advocate for Matt to have a proper diagnosis, the correct medications, monitor for side effects, and, of course, I had to advocate for decent end-of-life care! We must advocate when there is an injustice. We must speak up for changes!
Matt and I unfortunately had the “Hospice from Hell” experience. Hospice didn’t believe me that Matt was terminally agitated and dying! The hospital social worker dared to tell me that Matt couldn’t have a headache! I made formal complaints about this Hospice to Medicare and the N.J. Health Depth. There was nothing done!
It is an absolute travesty how Healthcare professionals treat people with dementia. I want to encourage people to be advocates because the squeaky wheel gets grease!
I never saw myself as an advocate, but Matt’s journey turned me into one. I started doing videos where I discussed Early Onset Alzheimer’s and caregiving issues. I also did videos with Matt. We all have a voice to use to help others and ourselves!
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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