Guest post by my dear friend Julie Klutinoty
“It had been almost two years since we moved mom into the ALF (assisted living facility) where she was becoming quite comfortable. I use the word, ‘comfortable’, as it best describes mom’s emotional state after having been forced to move out of her condo where she had been living independently since moving to Florida in 2004. As the pattern goes, Mom had moved to Florida to look after and care for her parents. And, shortly after she arrived, her father died.
Overall, I was feeling pretty good. I had learned how to pace myself with regard to the basics of looking after mom. Her friends kept a close eye on me and continuously asked me how frequently I was going to the facility. Even though she was in an ALF, there were many aspects of her care that were not covered under the facility’s care protocol. Not only had she lost the ability to walk or use a walker independently, but she had already established herself with doctors who were located beyond the range of the facility’s transportation service. I learned quickly what ‘independent’ really meant with regard to care. Thankfully for all of us, mom was friends with everyone and they all enjoyed helping her out. I am so grateful she was loved by so many.
It was late Thursday morning and I had just decided to take myself to lunch. Mom checked out okay the previous day and I knew I would see her Friday. As I was preparing to treat myself to an indulgent meal, my phone rang. It was mom’s friend who was visiting with her. She shared that mom seemed confused and was having trouble articulating and putting thoughts into words. ‘Here we go’, I thought. Many had been expecting the other shoe to drop, as it had been a shoe dropping that brought mom into the facility… that and a team of horses!
In the ER we received news of mom’s brain cancer. There was also cancer in her lungs and lymph glands. After insulting the ER neurologist and while still not able to speak clearly and fluently, mom had enough sense about her to ask the ER doctor, “are you sure that’s my name on that file?” It was January and the first Oncologist we spoke with gave mom ‘about two months’ to live. The 3 days spent in the hospital before returning to her ALF under Hospice Care, seemed like an eternity. After a series of comedic errors getting her back into her ALF which truly reminded me of the movie, One Flew Over the Cuckoo’s Nest, little did I know… the marathon had begun!
It was my dear friend, Valentina, who would check in with me and ask, ‘how are you doing?’. I would respond, ‘okay, good’. Unbeknownst to me, I had shifted into full ‘survival mode’. There was the family gathering which lasted over 7 days. Family and friends visiting and staying and taking mom out till all hours. One night they found her toppled over in her wheel chair with her upper body in bed while pulling on her ‘emergency call chord’!
She never did like missing out on the party.
February and March came and it continued. It was mid March when I phoned my sister and said, ‘she had a seizure, things have changed.’ I remember telling mom my sister would be arriving soon and mom asking me, ‘will she make me get out of bed?’. They were all signs that the cancer was progressing and she was beginning to lose the fight… which was saying something for this woman!
At first, Mom rallied while my sister was visiting. A clear lesson in fate was that you can never predict when someone will choose to leave their body. In efforts to bring closure for herself, my sister extended her visit. I could no longer keep pace with her drive to come to completion with her life with our mother. It was then, I began to feel what physical depletion was really like.
Valentina would ask me, ‘Are you okay?’ I began to realize that the ‘winner’ wasn’t the one sucking it up and not saying anything, but the ‘winner’, and the path to the finish line was the one sharing that they are feeling exhausted and doesn’t know how long this will go on. It all became a blur at about two months and after my sister left and returned home, I came to terms with the fact that I was one person, my mother’s daughter, and ‘I was doing the best I could’. And that was the phrase I adopted from then on.
I could no longer care about what my mom’s friends’ concerns were. There were many concerns. Her friends were not just anybody. They were retired Social Workers and Nurses, health care professionals and school teachers. And they were all freaking out because ‘the sky was falling’. And guess who they came to? Me! I had no choice but to step forward on my own terms with my new mantra, ‘I am doing the best I can.” I actually found comfort in the fact that my mother was terminally ill and she would die regardless of the care she got. At this time, she was already broken and nobody could damage her any more than she already was.
My job, as I saw it, was to do my best in keeping her as comfortable and pain free as I could. And thanks to Hospice, that’s what we did!
It’s just over a month since her transition and guess who checks in on me? Valentina. She asks me, ‘How are you doing, honey?”. I reply, ‘exhausted’. I no longer feel defeat or weak because I am recovering from caregiving for my mother. I weep and sometimes I sob… and I am not ashamed of the tears I shed after years of physical, mental and emotional energy spent while given the honor to care for my mother during her last years, days, minutes, breaths of life. Because I know, “I am doing the best I can.” I did the best I could. I love you, Mom.”
Val Boonstra
