Tonight's picture was taken in April of 2009. Mattie was in his hospital room and sandwiched between Meg (child life intern) and Anna (physical therapist). Both of these women did an outstanding job with Mattie. This may not seem like a big deal to look at this photo, but Mattie spent very little time standing and walking once his surgeries were completed. In fact, Mattie really had to re-learn to walk and put weight on his feet. This was a skill he never had the opportunity to regain because his cancer metastasized only six weeks off of chemotherapy. Nonetheless, the team of women who helped us on a daily basis will NEVER be forgotten! They are remarkable people who not only supported Mattie, but me as well!
Quote of the day: Life doesn't get easier or more forgiving, we get stronger and more resilient. ~ Steve Maraboli
It was another 6am morning, a time of day I absolutely despise. But if I didn't get up early there would be no way I could accomplish all that was on my plate and also get my parents to their cardiology appointments on time. When I tell you I am moving constantly from one task to the other. I feel frenetic and I can't even imagine a day much less an hour to myself. I have slowly lost all sense of my own identity, my ability to have friends, or any independence and freedom. Though the circumstances are very different, these feelings are not unlike when I was hospitalized with Mattie. The same lack of control and freedom are once again back in my life.
My parents had a good appointment with the cardiologist. His office is super nice to me, because my parents did not have back to back appointments. Yet they allowed us all in one room together and the doctor did see them back to back and treated us as one family unit. He is a stellar cardiologist and between him and the pulmonologist, I feel like I have found my parents two outstanding physicians.
After the doctor visits, I got them back into the car and I took them out to lunch. I admit it wasn't one of my better days. My dad now has the habit of consuming every bread product on the table. He moves as fast as a vacuum sucks up dirt. Of course with so much bread, then it is hard to eat his meal. So today when his meal came, he ate some of it (he started having trouble swallowing, because he eats way too fast, and so I have to manage the choking issue, which means I can never take my eye off of him not even for a minute) and then pushed it his plate in front of me to deal with. This meant he did not want to eat any more and he was finished with eating. At that point his head goes down and he is completely disengaged and ready to leave the restaurant. In essence, he will then stare at us to finish. But mind you we just started eating. The pressure I feel around him and managing his needs can be wearing.
Of course I have learned to eat much faster now, because I know as soon as food goes in, food is quickly going to come out of my dad! I have a window to eat because my dad will want to jump up and need to go to the bathroom. But going to the bathroom isn't just pointing him the way. Nope! I means getting his walker, helping him up from the seat, guiding him to the women's room and then taking him into a stall with me. My dad can't negotiate anything by himself and needs coaching while in the bathroom. I carry my Mary Poppins tote bag with me filled with wipes, depends, absorbent pads, gloves, and garbage bags. I couldn't make it without this bag.
When we finally got back to the table, I find all this activity takes my appetite away. My life isn't normal and I can't have a normal conversation. My dad has ZERO responsibility in his life. His therapists at the hospital encouraged him to get more engaged and to do things at home to help me. He refuses, has no interest, and I feel like I am working with an obstreperous child at times. I mentioned to my dad that he could take more responsibility when we eat together.... to slow his eating pace down, not consume so much bread and starches, and to be more mindful of the fact that we are here together and when he piles up plates in front of me and he is ready to leave, this bothers and agitates me. I certainly wouldn't do something repeatedly that agitated him, so why can't he comprehend my feelings??? I know the answer, I am dealing with someone who has moderate (moving to late) stage dementia. He is no longer capable of the mental activities and sensitivities I would hope to experience. I cognitively understand this and most times accept this reality but other times, I just LOSE it! As I said to my dad today, 'I could get more of a response out of the wall next to me than I can out of him.'
I am emotionally and physical spent. Yet I have to mentally prepare for the fact that tomorrow is yet another day of more of the same.
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