Tonight's picture was taken in July of 2005. Mattie was three years old and that summer we took him to the Outer Banks, in North Carolina. On the way onto the Island we always stopped at Morris Farms! I loved the produce and Mattie loved the farm equipment. It was an excellent stop for all of us. As you can see, Mattie was all business on top of this tractor.
Quote of the day: Presence is more than just being there. ~ Malcolm S. Forbes
Though I don't think this quote was written in the context of caregiving, it aptly applies. Being a caregiver, when dementia is involved, requires constant supervision. To be physically present! But being present is actually the easy part. Though of course this is physically demanding, however, what sets this job over the top is being emotionally present and aware. The emotional content that works its way into every hour of my role can take your breath away.
I don't only absorb the emotions and feelings of my dad, I also have my mom. Usually one is having or expressing issues, but today it was both of them. Honestly, it is 6pm, and I am absolutely frazzled, with no end in sight. I am frazzled from hearing and managing their discontent, their unhappiness about their situation and life, and I love when my dad gets into a wallowing state of self pity. This is when he tells me he is a burden! The first time he used that word with me, I listened and tried to reassure him. Certainly I could continue to reassure him, because when dealing with moderate stage dementia, every thirty minutes is like a new day for my dad. However, today, given my mom's issues that I faced, I was not as patient as I typically am. So today, I gave my dad a reality check.
He is wallowing because he views himself as a physical burden. I feel it is important for him to see himself as most of us do, and that is for his age he functions fairly well. He can walk, talk, and eat. Those are three pluses. I have slowly been helping him see that his bigger issues are cognitive. Which is why he goes to a memory care center three times a week, four hours at a time. His outbursts usually are a result of spending time at the memory center. He rather be home. However, I tried that for 3.5 months and no matter what I did, he slept the day away. Which I don't think is good for him cognitively or physically. Therefore I felt I had no other choice but to turn to the community for outside engagement and stimulation. I am not sure if he thinks I am parking him there by day, so we can do things without him?!
I even asked him about this, but understand that even in my dad's heyday, he was NEVER physically active and he had few to NO interests outside of work. Therefore, even when we got together as a family or went on vacation together, he always sat, while we toured around and did things. I honestly believe this has come back to bite him, as having outside interests in my opinion is the key to surviving life.
Any case, I did explain to my dad that the average user of the memory care center is there from 7am to 5pm. My dad is only there from 10am to 2pm (3 days a week). The rest of the time he is with me! Somehow he did not seem to know this until I explained it again. So the perception of being a burden and being disengaged from his family, even for a short period of time, is problematic for him. So he needs constant reassurance, which is another role I play for both of my parents EVERY day!
Long way of saying.... my role is not for the meek. It requires physical and mental strength, and I would say the fact that I haven't cracked up yet is remarkable.
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