Tonight's picture was taken in January of 2006. Mattie was three and a half years old and that day in preschool, I came into the classroom and brought two handmade gingerbread houses for the children to decorate. I never made gingerbread before in my life. But when I asked Mattie's teacher if there was something I could do for the classroom, she requested this activity. I remember I contacted Peter's mom and asked her for her gingerbread and her royal icing recipes. Given that I never assembled a house before, these two came out quite well. The children absolutely LOVED the activity, so much so, that every classroom in the school got a chance to come into the room and work on these houses. One little girl had me laughing. She thought the royal icing was glue. When I told her that it was royal icing, which was edible, she tried it immediately. It was priceless.
Quote of the day: It is not important what is said, what is important is what is heard. ~ Jeffrey Fry
My mom and I had a family meeting with the staff at my dad's memory care center this morning. We asked for this meeting because their quarterly evaluations of him seemed very basic, and not very specific to him. They tell families that they welcome meetings any time, so I scheduled one.
My dad started this program in March of 2022. Therefore he has been there many months now, and the program should be routine for him, and the staff should know him well. In attendance at the meeting was the program nurse, the program director, and social worker. I am not sure what I was hoping would occur from this meeting, but I assure you the only thing the meeting produced was FRUSTRATION.
I am very aware of the fact that my dad has moderate stage dementia. That improvements are not going to happen, only decline. I am a realist, but I am also an optimist in the sense that I believe with structure, some responsibility, and working his brain that this could help maintain his current level of functioning. I strongly believe that some sort of intervention is better than nothing.
We came in today to discuss my dad's engagement within the program, as well as his socialization with others while there. When we asked what his days look like, they told us he is VERY engaged, NEVER sleeps through a session, and LOVES the activities like trivia and brain games. They also said that he does converse with classmates. To make a long story short, the person they were describing did NOT sound familiar to me at all. I told them if I did not know better, I would think they were talking about a completely different patient. I also expressed that I can't understand how they experience him one way and we a totally different way.
The program director said she would send him home with brain games to do at home, since he loves them so much. So I stopped her in her tracks. I asked her how were these trivia and brain games done in class. She said as a group, and they do things together. OF COURSE, because my dad and probably others can't process through anything without supervision and assistance. The last thing I need is more activities at home in which I have to sit down and do them with my dad. I say this because I do this daily already! Instead, I am looking for activities he will self start and want to try to complete. What I have sadly concluded is those days are done, and I just have to accept this!
In fact, the staff confronted my mom and told her what she expects from my dad (such as for him to report back one thing he did at the memory care center each day) is unreasonable. I certainly know this, as my dad can't retain anything past about thirty seconds. However, my mom said she wants him to write in his notebook while at the center (give him a small notebook for his pocket). The staff said if we give them a template, they will get him to complete it. My mom was happy with that! I was NOT!
I told them outright that I am not looking for one more activity for Vicki to do and be responsible for. I already keep a calendar for him, a white board, and a daily journal at home. I am not going to also do a template for THEM! The reason I chose their facility is because they focus on dementia support. Therefore, it would be my hope that they would want to integrate memory strategies into the day for every patient. I told them every patient should have a notebook and given the time to use it. Using it could mean different things per patient. Even drawing a picture, a dot, or a writing a word means something! I told them that this is very frustrating for family members, as we can't communicate with my dad about his day and he gets frustrated because he remembers nothing. Which is why a notebook can be helpful. I don't care what form of dementia someone has, I truly believe encouraging participation and engagement contributes to quality of life. So I told them they need to prompt my dad to use his notebook throughout the day.
They pushed back at me, but I kept at it. My dad's speech therapist (from months ago) believes he is capable of reflection with support and prompts. I told them I do this for him at home, and at the least they should be doing this at the center. Otherwise, what's the point of going to a memory based care center? We specifically chose such a center with the expectations that they are skilled with this population and work with participants on memory strategies.... writing, repeating, associating, and picturing.
So there was disagreement about my dad. They view him as a peach and I told them sure.... he isn't a behavioral problem, doesn't wander, doesn't cause commotion, and is compliant. So from their perspective he is EASY. But that doesn't scratch the surface on my dad at all. They think he loves their program, but I know he doesn't! He never looks forward to going.
But what got me most upset about today was I felt UNHEARD and NOT VALIDATED. It was like talking to three poker players. They showed no emotion, did not try to normalize things for us, or be empathetic about all that I am balancing. I can not imagine sitting in front of a caregiver and acting this way. They provided no information about the disease, no normalization that this is how others are within the program, and certainly telling me that he is happy, engaged, and talkative within the program, makes me feel that I am doing something very wrong at home. Overall, it was a rotten meeting and when I got back into the car, I was so livid and angry, I couldn't even talk until I calmed down.
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