Lessons in Dementia Caregiving pt. 1

I’ve decided to start sharing my life lessons on this topic because it is an area that I want to move towards being of service to others. I became a care partner to my parents about five years ago. My father had been living with advanced Parkinson’s Disease. Then dementia was told, most likely Lewy Body Dementia, and then my mother was diagnosed with early-onset Alzheimer’s Disease at 62 years old. These diseases are challenging on anyone; what has been especially hard for our family was to watch as my parents each wanted to care for each other- they wanted this desperately, but they just couldn’t. At a certain point, it was no longer safe and my brother and I (and our wives) stepped up to help. We had no idea what we were doing but with help and guidance from others, we got through those first few years.

We tried looking into assisted living options, but my dad’s needs were beyond what was accepted in these living spaces. We worked with attorneys who were kind enough to help out, giving a lot of their time at a low cost to help us. We moved both of my parents into our house in late 2020 to attempt to care for them ourselves with the help of others. We soon learned that my dad needed the help of many, and my wife and I were not at a point where we could afford not to work and hire an in-house team. I’m not going to go into all of the details and challenges that came our way for two years as we tried to make the best decisions and navigate these hardships, but I will say that I am so grateful knowing that we all did our best and ended up on the other side feeling more love for each other than ever before.

My family 2015 in Brown County. I am so grateful that we had these moments.

We lost my father on 1/16/2023 due to complications associated with Parkinson’s Disease. At this point, my mother had been living with us for a couple of years. At times, we thought we had a grasp of her needs and how we were juggling life, and then we were constantly confronted with something new. We would notice that if we did anything outside the norm, like plan a weekend trip away, it would take weeks to get her back to a calm place where she would sleep at night. Or all of a sudden, she would want to be my shadow an entire morning while I was trying to return emails or trying to take a shower while getting ready for the day. If I showed any frustration (even though I was frustrated at the disease and not her), it would cause hours of emotional upset that would affect me for the rest of the day. These were really hard times for all of us.

These are only a few aspects of day-to-day living as an Alzheimer’s caregiver. These are also unique to my mom’s expression of the disease. My father living with LBD with Parkinson’s was completely different. As I have frequented caregiver support groups and events, I hear many similarities and experiences that we have not gone through. Some people living with Alzheimer’s (or other dementia) understand what they are going through, and some forget and have no idea (my mom).

At this point, I can say with complete confidence and clarity that my mom lives a pretty happy life. She has the things she loves: her TV, snacks, Jackie (her cat), and a few activities with friends. And, of course, I visit three times a week, and my brother and his family visit often. I’ve spent a lot of time learning about the disease and recognizing that my life and the life that I want to live are not offering my mom the comfort of a routine that would help her live her best life. I understand what it feels like to feel overwhelmed and drowning in responsibility and sadness as a caregiver. I also know what it feels like to move through that fear, even past it, and into a place of peace and connection with my mom.

My mom recently on one of my visits where I did her hair and nails. I try now to have as many special moments full of laughter and just being silly. That’s what she likes and I want to look back on this time remembering her smile.

I share this part of my life to offer some perspective to those going through similar experiences. I also share because maybe you are reading and want to find ways to help someone living as a caregiver or care partner to someone with dementia. I would love to offer time to speak about ways to find joy and fulfillment on the other side of fear and hardship. I work with people to offer support and structure daily so that they can find time to care for themselves (the caregiver or care-partner or however you relate). We take on these roles so that we can make a difference in other’s lives and maintaining our own mental and physical health is an integral part of being able to show up for others in this way.

To set up an individualized call or in-person meeting email me at bridgettdivohl@gmail.com or click on the link on my website.