Tackling Tough Topics

The Tackling Tough Topics BLOG 10: How do you survive and thrive during caregiving

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 10: How do you survive and thrive during caregiving

10/1/2024

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:

Taking care of yourself first is key as a caregiver, care partner, caretaker, and advocate. Many times, I did not follow this advice. I always thought mom felt safe when I was nearby so I needed to be there to comfort her as much as I could. I never wanted to regret anything, and I do not accept that we still have no cure for PD.

As an advocate I fight for a PD cure in my mother’s memory so on a tough day I may feel burned out or possibly quitting but then I realize I never want any person or family to ever go through what my mother and our family have so I sacrifice my time, exercise, and my health for others. Not the best recommendation but each of us has our path and journey as well as the final mission. Mine is to end PD. Yes, I cannot bring my mother bad sadly, but we can work together so others do not find the loss of a loved one or another battle that is too late to save until there is a cure.

The question is how to survive and thrive during the process. I was thrown into caregiving and had no training or experience and looking back I do not think that would have helped. Every individual is different, and every disease treats the diagnosis differently and this makes it a major struggle for ever proper care.

I devote 24/7 to finding ways to help mom stay comfortable. There were ups and downs. Somedays she was able to communicate and others she was not. Many days as a caregiver I felt hopeless, but I never let my mother see my reality. I wanted to remain strong for her but some days I felt like we were losing to Parkinson’s Disease. We were told many times that she would not pass due to PD, but she was only 69 years old and never had any other medical issues, so it was difficult to plan since it was so unknown and tragic.

You must always keep your head up, stand strong, and be there to support your loved one. That I feel is the key. Only then can you begin to thrive as a caregiver. It does feel like a battle of the fittest and trying to survive when your goal is to concentrate and help your loved one. So, it is a juggling act of taking care of yourself versus taking care of your loved one. There is no right or wrong answer, but it is critical to strive for the best and not let negative thoughts or outcomes deter you from the goal, which is to comfort, care, and assist your loved one through their journey and battle the disease that they were diagnosed with. As a family, we must support our loved ones and I believe search various venues and do our best to never regret any opportunities or methods we could take to attempt to assist our loved ones.

Matt’s wife, Betsy:

That is probably different for each person, but I will share how I survived and thrived during caregiving! I had a determined mindset that I was not going to let Alzheimer’s defeat me! I knew there would be a life after caregiving that I wanted to enjoy. It wasn’t easy at times to have a positive mindset! I knew I had to survive because  I am still a caregiver for my son! I highly recommend counseling, which helped me tremendously.  Caregivers need support.  Caregivers must take care of themselves, which I know can be challenging. Many caregivers neglect their health, which isn’t a wise choice if you want to enjoy life after caregiving.  I lived in the present but had an eye for the future. I thought about what life would be like after caregiving.  The reality is that your caregiving journey will end. What are you going to do? Find your purpose and your passion!

I had a passion to help others and to share my experiences.  I also wanted to share resources with others I wish I had known about during caregiving or even my youth! I was very fortunate to have met Jeanne White, Station Manager of PWTRN.

If you plan to return to the workplace, I recommend brushing up on your skills. I recommend being proactive and doing what you can to enjoy life during and after caregiving.  I highly recommend educating yourself about your loved one’s diagnosis, learning about Palliative and Hospice Care, and educating yourself about the dying process so you will know what to expect.  I know there was a difference between my mother-in-law’s journey, where information was unavailable then, and Matt’s journey, when some information was available!

I have found knowing how to handle behaviors was much less stressful! Do what feeds your soul! It is not selfish to recharge yourself and to do what nourishes your soul. That could be reading, walking, deep breathing, or whatever gives you joy and lights up your soul! Live in the moment and treasure your time with your loved one. Go out and do what you can with your loved one as much as possible!

Enjoy your life! Have gratitude.  I   have a whole new appreciation and zest for life! Yes, You can survive and thrive during caregiving! I know I am a completely different person.  Alzheimer’s took Matt, but I discovered my strengths and voice, which I use to help others! In my opinion, The best way I can honor Matt’s memory is to help others and enjoy life to the fullest!

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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

Ackerman, G. (2024). PwP Around the World.  Retrieved from https://www.togetherforsharon.com/pwp-throughout-the-world/

Ackerman, G. (20203). About Us.  Retrieved from https://www.togetherforsharon.com/about-us/#mission

Photo Credit

AdMind (2024). How AI is Exposing the Dark Side of Social Media Marketing  Retrieved from https://www.admind.ai/en/2023/04/20/how-ai-is-exposing-the-dark-side-of-social-media-marketing/