Visiting Mom
You may have noticed I took a little hiatus. Then again, you may not have. The thing I love about this community is how supportive it is. To make time and space for ourselves and those around us often means that we don’t get to listen to every podcast episode, read every blog post, and shop with each local vendor we support every week. When I stop focusing on my personal output as measured by published posts and instead look at what I’ve accomplished by being a consumer of content and a present participant in others’ lives, I recognize that value is just as high and rewarding for me and that you on the other end of this screen have plenty else to keep you preoccupied until I hit publish again. Thank you for waiting patiently for me to post and for reading and commenting when you find the time.
The week before last, I took my two and a half year old daughter on a road trip to SC to visit my mom. I struggle with how much to share, not because I want to hide anything or gloss over reality. I want to open a window for those of you who truly want to know what this journey looks like for those of us struggling with it and for those of you who would like to know you’re not alone in your own walk as a caregiver. Then again, the things I’m writing about pertain to my mom just as much if not more than they do to me, and she is not cognizant enough to provide her consent for me to share these deeply personal scenarios. For honesty’s sake as well as respect for her own agency, I will simply tell you it was emotionally tougher than last time.
Last time was more physically demanding. This time was physically demanding too, but alleviated a bit by having my mom’s caregiver along during part of the visit. During this trip, I came to the realization that having my mom spend time with my daughter is not entirely beneficial. My mom was an educator all her life and has always had a deep passion for working with children. I have had the mentality up until this trip that time with Luna would be good for her mental health and her soul. I also felt Luna needed to spend time with her grandmother and to play with her before my mom might no longer recognize who she is. This trip, Luna picked up on and witnessed things that she knew were unorthodox for a neurotypical adult. My daughter was noticing behaviors that I similarly witnessed with my grandmother that have stuck with me to this day. Luna is still young, so maybe those memories won’t “stick,” but she is almost 3. That time is fast approaching. I know I cannot shield my daughter from all unpleasant things in life. However, I don’t particularly want her suffering the trauma of seeing her grandmother behave in a manner that does not align with the mom I knew, especially while not yet fully able to understand why it is happening. I saw my mom enthralled and delighted with Luna on this visit. I also saw her frustrated and annoyed without the wherewithal to manage those emotions effectively. I saw Luna’s behavior shift in response. It broke my heart.
It is in these recognitions, in these small (and large) shifts of what our new reality becomes that the effects of dementia are felt. Until you’ve lived it, I really don’t think the impact of those shifts can be explained with words, though I find myself still trying to do so. The first question from everyone when I mention dementia is “Does she still know who you are?” as if that is a barometer for the weight that I am bearing. Yes, she does still know who I am. I am grateful for that. The progression is still hard to witness. Visits and calls still take an emotional toll.
Prior to our trip, I told others that Luna and I were heading out to visit my mom. To people’s joyful responses, I found myself clarifying, “she has dementia.” Why did I feel the need to do this? I felt like garbage about doing so afterwards. Then, I received an email from Luna’s daycare director (someone that I had shared that sentiment with) telling me she had just lost her father to a long battle with the disease. It reminded me of an often repeated message from my friend and mentor Booth Andrews. Situations can be both and. I could admit to myself and out loud to others that “yes, we are looking forward to visiting my mom, and it is going to be a challenging trip.”
I was happy to see my mom and spend time with her. I appreciated and valued our visit very much. I fully acknowledge that getting to spend time with her while she is still here and knows who I am is a precious gift. I also returned home incredibly drained. Over the course of 4 days, I spent 13 hours in the car with a toddler (with no person or screen in the back seat as a distraction), but honestly Luna handled it like a trooper. I managed bathroom trips, laundered bed sheets, planned and paid for all meals, administered medicine, redirected conversations, found the old photo albums, spent hours cleaning out clutter, and arranged a day trip to and from Asheville so that my mom could re-connect with one of her dearest friends of 40+ years. In addition to caring for my mom as I shared a visit with her, I of course fed, entertained, bathed, and cared for my daughter along the way, all while trying to encourage a healthy relationship between the two of them and trying to shield my daughter from some of the challenges I was encountering.
I am grateful for time with my mom where she knows who I am and I am equally saddened by the shifts I’m seeing.
