It’s been over four years since my last confession. I was about to write that it’s been four years since my last foray down the dimly lit hallway that is my memory and imagination. I took a rather long break from writing. This pause was brought on first by a crisis that turned into obligation and necessity. My journey as primary caregiver and power of attorney to parents each having a different variation of dementia started in 2010. From 2010 to 2018, my role was important, but I operated more in the background of their lives. I helped with their medication, their bills, shopping, driving and taking care of daily tasks. I was not helping them dress yet, nor bathe- nor prepare meals. However, on the weekend following Thanksgiving in 2018, everything changed. Mom fell and ended up with a pelvic fracture. She had to stay in a transitional care home for a month through the Christmas season. That is when Dad’s dementia became more severe. My role in their lives took on a new dimension. It was full tilt and responsibility for everything in their lives. That combined with my full-time job resulted in the loss of any “me” time. The time that I had previously carved out for myself to write was gone. In fact, I had no time for myself at all. As an only child- with no children and no spouse… I was it. I was and still am the only relation to care for my parents.
For the next 14 months, I never slept through a night. I rushed up the stairs to their bedroom every night when I heard a fall or a scream. I ended up installing video cameras and baby monitors so that I could hear them better. Middle of the night bed linen changes due to incontinence- experimenting with various incontinence undergarments did not help- they always leaked. I found that if I put multiple sheets on the bed and in between each sheet layered a plastic disposable tablecloth, then I could just pull off the wet one and one tablecloth- and have a new fresh sheet for them. This was amazing at 2am as I did not have to spend too much time worrying about their balance and safety while they waited for me to do a more involved bed change. That was a game changer. The incontinence bed linen changes were almost a nightly experience. And at times, those nightly interruptions involved falls- for both of them… at different times.
I endured a tremendous amount of stress managing two parents with fall risk and dementia. Even with help from an in-home care service, my world turned to chaos. The expense of the in-home care service which I employed so that I could continue to at least work full time in the home (remote work prior to the pandemic) was astronomical. We were blowing through my parents’ savings at around $6K-$8K a month depending on the extent of the needs on any given month… to care for them both daily! Even with that help, I went to a very dark place. On the December prior to the start of the pandemic, their doctor, family members (their siblings mostly) and social services urged me to move my parents both to an Assisted Living Facility because their care needs were more than one person could handle safely. Especially Dad now with his vascular dementia and Mom with Lewy Body Parkinsons and her continued balance issues. The move was the best decision.
After the move, I was still very involved with their care and handling their medical records and care was still an intense job. But their safety with trained professionals to help with daily care, was an incredible gift. The guilt was present most days as I listened to those voices tell me I was a failure for not being able to manage on my own. To make sure that they stayed in their home to the end. Logic helped to quiet those voices as I saw the amazing benefit of being able to return to the role of daughter once again. Our relationship improved and we were able to just enjoy each other rather than working in a role of daily service. And, for the first time in well over a year, I had a full night’s sleep.
Until someone navigates a world that includes baby monitors, video cameras in bedrooms and bathrooms in order to ensure safety… until someone has had to lift a parent from a bathroom floor covered in blood because of a fall due to balance issues… visit the ER many times in a year due to various scary medical incidents- some involving Trans Ischemic Attacks. Until someone has had to juggle full time care including making meals, helping with toileting (for both parents), bathing, dressing and ensuring their safety while working full time… until a person experiences a world that includes daily trauma- they should not judge a person’s step to having their loved ones move to a long-term care facility. The staff where my parents ended up- were and are still amazing. I had done a lot of work to find the best place- many tours, many hours filled with assessing. I worked with an elder care attorney to help me navigate my state’s laws and the benefits my parents could receive through government programs so that we could afford this solution long term. And while that was and continues to be an expensive service- the alternative would have been disastrous. The elder care attorney saved us in the end. I don’t know what we would have done without them and other social service programs. The quest for a perfect care facility is always nerve wracking and never a guarantee that those hours of searching will result in a perfect situation. Some friends commented at how terrible it was that this move happened just before the pandemic. For me, it felt like I had gotten them in just in time. I couldn’t have imagined our world in a pandemic situation with in home care givers not being able to come due to sickness or policies… I would have been completely on my own. Instead, my parents had professionals to help them daily and I could rest knowing that they were safe. And, because I was their primary care giver I was given permission to visit them starting the summer of 2020. While we had a few months of being limited to only phone visits, it was fine. We made it through. And, in the end, my parents ended up in a place that to this day, over three years later- is one that my Mom continues to praise. She often shares her gratitude with me and compliments the place that is filled with her friends (many of those friends are actually caregivers/staff). And, she has made friends with other residents and enjoys her days for the most part. Is it perfect? No. Is it what she had in her beautiful home all those years? No. It’s a different stage of her life that is playing out nicely- with good experiences, beneficial activities, friendships and solid care. She has friends there, she is content, and she is cared for and she is safe. And I can breathe knowing she is ok; she has the care she needs for the rest of her life.
Dad passed away almost two years ago – he was in his 90s with vascular dementia and his decline had been dramatic with his days in a Giudi Chair (a reclining chair used for dementia patients) and the staff having to use a Hoyer lift to move him from bed to chair.
So, my world changed dramatically. And writing was just no longer a part of it. Even if it could have been therapeutic, I did not want to write about what I was dealing with on a daily basis. I needed to escape, not relive every moment on the screen. So, I turned to knitting. The meditative quality of it helped more than I can even express.
Today something shifted in me. I decided to find my way back to the page. To dip my toe back into the water. I am essentially just peeking over the wall for now. I am not making a daily commitment. But rather, trying to find my balance again. Do I have it in me? Does the idea of a regular writing practice lure me as it did years ago? Does it excite me? I am not sure. But I like this first step.
A Lullaby For Sofie 