What Dementia Taught Me: Part 2

Let’s face it, when going to battle with the diseases of Dementia and Alzheimer’s all bets are off. We most certainly need to gather as much information as possible and learn everything we can about these conditions but in the end, we usually fly by the seat of our pants. We need to make daily adjustments to the way we cope and manage the care and lives of those we care for. I always say that my caregiving journey helped me earn my Ph.D. from the University of the Seat of My Pants.

This was not easy for me. My type A, control freak personality likes everything in neatly organized boxes so when my Mom was diagnosed with Dementia I thought I had it covered and approached it in a systematic, calculated way with expectations of knowing how to handle it all smoothly.

Anyone reading this who is dealing with this disease is laughing out loud. While the symptoms, stages, progression, and results of these devastating conditions follow the same path in general, every single case is unique just like the people who have it. While it’s possible to be prepared for some of the situations and circumstances no one can predict how our loved ones will process or respond either to the symptoms or the treatments. The only way to calculate how to care for someone with dementia is to know that you can’t calculate or predict anything at all. It takes no prisoners and destroys everyone in its wake.

So to show up as my Mom’s caregiver, I had to adjust my behavior and belief system. I had to accept the unpredictability. Dementia had me hostage and I had to surrender and learn to go with the flow which was something I had struggled with all of my life. It didn’t feel safe to just let go and not try to control everything but I knew if I didn’t let go of control, I would drive myself and everyone around me crazy. Dealing with the ravages of this disease was bad enough. I had to stop being so rigid I would break.

I tried everything I could to be in the moment and not be focused on the future or the past. I meditated, went to therapy, spoke to other caregivers, exercised when I could and tried to stop inhaling desserts. It was so hard. I have always survived by trying to be in control and planning everything down to the littlest detail and here I was playing whack the weasel. I was completely out of my element with no relief except to surrender, let go and let God and do the best I could. I did everything possible to respond positively and quickly to what the universe and this disease were throwing at me.

It was quite a learning curve but here’s what I learned. I learned to appreciate ritual but be less structured, realize I should rest but not quit, accept change, let go of my expectations and last but not least let go of control. Had I not embraced these lessons, I would not have survived. Being open and vulnerable, accepting and surrendering got me through the worst of it all and allowed me to actually be present not only for the bad times but to see those little miraculous moments when the sun broke through the clouds. I never expected such powerful life lessons but am eternally grateful for them.