Tonight's picture was taken in August of 2009. By this point we knew that Mattie's cancer had metastasized and his situation was terminal. Peter and I were beyond overwhelmed and that day, Mattie was surrounded by all his hospital buddies in the child life playroom. Everyone was trying to engage with Mattie and distract him. Sitting next to Mattie was Jenny, one of Mattie's art therapists. Jessie (the other art therapist) was in grey and looking on, and Liz (in black) was one of the resident artists who worked with Mattie on creating many pieces of poetry during his time in the hospital! How I kept it together back then is beyond me because it felt like our world was crashing down quickly.
Quote of the day: Fatigue makes fools of us all. It robs you of your skills and your judgment, and it blinds you to creative solutions. It's the best-conditioned athlete, not the most talented, who generally wins when the going gets tough. ~ Harvey Mackay
The art of caregiving has a lot to do with today's quote. As fatigue is a natural part of the process. How could it not be?! When you meet the needs of people around the clock, for months on end, it takes its toll. But physically and emotionally. But like this quote, the one who wins the caregiving race is not the one who is the most talented, but instead the one best conditioned. Of course being conditioned as a athlete, is a lot different from being conditioned as a caregiver. To be a conditioned caregiver requires inner strength, patience, and an ability to hold it together when everything feels like it is falling apart. It also requires the ability to be hopeful and to realize that you must take it one day at a time.
Some days I can take it better than others and some days, I can feel anxious because I am trapped, unable to control any aspect of my life. Yesterday was a long day, as my dad had occupational and physical therapy back to back. We were at the hospital from 2:30pm to 5:00pm. Then after that I took my parents out to eat. By the time I got home, it was after 8:30pm and my dad was super wiped out.
I happen to like my dad's therapy team. They are all young women, most likely in their late twenties, but they are competent, compassionate, and have a lot of positivity. That said they are also realistic and have some sort of appreciation for the toll all of this has on me. It is very challenging to care for my parents all day and then to also shuttle them around to therapy appointments throughout the week. Of course with my dad, he won't remember the therapy session immediately after it is over. Therefore if he will have any success in therapy, it is because I am managing his care and following through on the exercises with him at home. My daily to do list is truly over the top.
This morning, while my dad was at his memory care center, I took my mom to her own physical therapy appointment. My mom goes to a different place for therapy and though her therapist is different from my dad's in personality, I like her too. However, what I notice about adding therapy to my dad's routine, is that he is far more exhausted and also more negative. If that is at all possible.
Meanwhile, in September one of my dad's colleagues who lives in England, plans on coming to visit and stay with us for a few days. I am trying to warn him what visiting us will be like. He hasn't seen my parents since before COVID. They have changed dramatically since he last saw them and there is NO WAY on earth that I can go sightseeing or do anything with someone visiting from overseas. I have no idea how such a visit will go and for the most part I don't like bringing people into my dysfunctional world right now because I truly can hardly manage my day to day existence.
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