Tonight's picture was taken in July of 2009. Mattie was in the outpatient clinic of the hospital and was having a ball in the art therapy department's sink. Mattie and his buddies filled the sink with water and started floating all sorts of things as well as had boat races, from boats they made together.
Quote of the day: The thing about Alzheimer’s is that it’s it’s sort of like all these little, small deaths along the way, before they actually physically die. ~ Lucinda Williams
I created a template for my dad's memory notebook. Instead of me designing new questions everyday, the speech therapist felt it would be easier if my dad got used to seeing the SAME format each day. So last night I had to generate a standardized template that would apply to whether he was home or at his memory care center. It was my hope that he would use the notebook while at the memory care center today. But my dad is a hoot. For the most part he has never been into writing, reflecting, or sharing memories. Therefore this task isn't normal to him. He did not have these skills pre-dementia, and now we are asking him to use a part of his brain he never developed. One of my questions in the notebook is:
List one or two things you did this morning and who was with you? You want to know how he responded to this question today? Keep in mind he was at the memory care center and they were doing all sorts of activities including a discussion on volcanoes and a mini demonstration. His response to my questions was...
Had a light snack!
Do you find this response as amusing as me? If the center did not give me their daily schedule, I would think he did nothing there all day. The sad part is he honestly has NO MEMORY of any of the activities he just did. His memory span is less than a minute, and I am not joking.
While my dad was at the memory center today, I accomplished two things. Peter and I had a call with parents whose only child died from osteosarcoma in November of 2021 and I approved another M&M Wish for a child from Honduras who is seeking treatment at the National Institutes of Health.
The child in question is actually 20 years old, and has an untreated form of childhood leukemia. Prior to coming to the USA, he received procedures in other countries without the use of pain medication. Needless to say trauma is a part of his cancer experience and because his family is from Honduras, he is undergoing treatment without the ability to see his brother and father for months on end. Only he and his mom are in the states. However, the whole family is in town this weekend and he wanted to go to a local music concert. Because his treatment center wants him in box seats due to his immunocompromised condition, Mattie Miracle is covering this expense so he can attend the concert and reunite over something positive with his family. I am happy we can make this wish come true.
As for the phone call with recently bereaved parents, my first reaction was.... wow they seem so much more together than I felt nine months after Mattie died. Ironically, to me this is all perception, as I know internally they are most likely struggling and trying to find a way each day to live, get out of bed, and find a way forward.
I remember this lost feeling and appreciate this parent's desire to do something to help other children. Mainly because we couldn't help our own child and yet we want to take the knowledge we gained in order to make another child's journey a little bit easier. Or better supported at least. In addition, I think we are all focused on creating a legacy for our child, and given that we both experienced the loss of an only child, we realize if we don't create and nurture this legacy, IT WON'T HAPPEN. That too is a daunting reality and one that still plagues me today. It puts great pressure on me and at the same time, no matter how much I put into the work, it won't bring Mattie back and certainly it won't replace him. Again, some days I deal with that reality better than others and now that I have resumed my intense full-time caregiver role, I have to admit all of this can impact my mood, my feelings about the present, and my hope that I will have a better future.
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