Tuesday, August 16, 2022

Tuesday, August 16, 2022 -- Mattie died 672 weeks ago today.

Tonight's picture was taken in August of 2008. Mattie was in his first month of treatment and was home that day. His long time occupational therapist, Kathie, came over to visit. Kathie worked with Mattie when he was a preschooler (pre-cancer) for about two years, twice a week. I turned to Kathie because Mattie's first preschool and pediatrician thought he was a special needs child. What I came to appreciate was that Mattie had a sensory integration issue which explained his sensitivities to sound and touch. In fact the first time Kathie met Mattie for an evaluation, he pulled her glasses right off her face. If you did not understand Mattie's behaviors well, you would honestly think he had an aggressive side to him. But I think it was frustration from being overwhelmed by his environment. Over two years of therapy, we worked on desensitizing Mattie to certain sounds and textures and by the time he entered kindergarten NO ONE knew Mattie had any issues. I am a strong believer in early interventions, as I saw they worked beautifully with Mattie. 

Quote of the day: You can’t converse with Alzheimer’s sufferers in the way you do with others; the dialogue tends to go round in circles. ~ Kevin Whately

My dad had back to back therapy today starting at 3pm. It is now 8:30pm, and I just got home. I am wiped out. When he goes to therapy, I have my mom in tow. I leave her with some hot tea in the hospital's atrium. While she is there, I go into all of my dad's therapy sessions. I am needed because within five minutes of the completion of a session, my dad remembers nothing. So in essence for therapy to go effectively, I have to be the driver and task master. Which I assure you is exhausting. 

After five sessions of speech therapy, my dad was discharged from that service today. Not because he has stabilized, but because there is just so much that can be done with him. Therefore whatever we learned in session, the suggestion is I continue it at home. I went into today's speech therapy session with the idea that TODAY was going to be the last time my dad would use this daily log notebook that we created. I felt this way because I am the one working hard and getting super frustrated with this book. My dad has no desire or interest to pick up the book and find information out for himself, much less record facts, thoughts, and feelings about his day! I keep saying to myself... who is this book for? Who is benefitting from this book?

Yet between occupational therapy and speech therapy today, there was a thirty minute break. While sitting with my dad, he decided to share with me his reflections on the top five things that influenced his life. I was absolutely stunned that he wanted to be reflective, so I grabbed his daily log book and encouraged him to write it down. Here were his top 6 things:

1. When my dad entered kindergarten, he did not speak English, only Italian. 
2. My dad played his saxophone on the stage of Carnegie Hall as a child. 
3. In college, my dad tutored the blind. 
4. My dad sat for the 14 hour long CPA exam.
5. My dad was a surgical nurse in the Army.
6. My dad played saxophone with the famous Stan Getz. 

Now if we did not have his notebook, we wouldn't have recorded his thoughts in that moment in time! With dementia, you NEVER will have that moment again, so you got to take it when it comes and be ready! So just when I think I should give up, my dad surprises me. I shared this revelation with the therapist today. Within speech therapy, we were trying to encourage my dad to share more content and conversation. We feel this is important because right now my dad writes and talks like a telegram. Words and not sentences! 

The therapist worked with my dad on a three part strategy: (1) acknowledge the question, (2) report out information from his notebook, and (3) provide a reflection or insight from this reported content. For example: On Wednesday of last week, we had a horrific thunder and rain storm (as reported in the notebook). So my question to my dad was did something unusual happen last Wednesday? Following the three step model to get him to share information and thoughts, he could say for #1 (acknowledge question): Yes something very unusual happened on Wednesday. For #2 (report out information), my dad could say, there was a terrible thunder and lightning storm. Finally, for #3 (reflecting on the topic), my dad could say.... we did not have storms like this in Los Angeles and I find them scary. 

No matter how many times Maria (the therapist) and I went through this with my dad, he couldn't get it. So it is no surprise that when we met up with my mom and she asked him about his session, he had NOTHING to say. I am honest, within five minutes, whatever he just did, is LOST. His brain is like a big black hole and there are times I have great patience and manage this well, and other times, I am frustrated. The book is a great source of frustration for me, but I am aware of the fact that my dad has NO insight into his situation or his significant degree of memory loss. Therefore he has no incentive to do something about it. I get his situation, but I assure you I don't like the impact of it on my emotional state!