Tonight's picture was taken in December of 2004. Mattie was two and half years old and this was a typical scene in our home. Mattie surrounded by toys and things with wheels. He was fascinated by locomotion. If you look behind Mattie, you will see a sippy cup of milk on the floor. Mattie was a big milk drinker. He drank so much milk that our joke was that we should invest in our own cow and that he was going to have the strongest bones around. It is rather ironic though that Mattie was diagnosed with bone cancer.
Quote of the day: Sometimes our work as caregivers is not for the faint of heart. But, you will never know what you’re made of until you step into the fire. Step bravely. ~ Deborah A. Beasley
It was another day in paradise here. My dad went to his memory care center and at 1pm, my mom had cognitive testing at the neurologist office. This is the second neurologist we have seen. Frankly I really did not know why she had to do this testing, as she endured a three hour battery of testing at my neurology office in September. That battery of tests revealed that my mom has memory loss and needs support. Facts that she doesn't want to accept AT ALL.
Given that I am trying to establish a connection with a neurologist, and one my mom tolerates, I had my mom comply with this additional request for testing today. I did not realize the assessor was going to welcome me into the testing room, but she did. So unfortunately I got to watch how the test was administered. Back in September, I did meet the psychologist who worked with my mom. She was excellent and invited me in initially to provide my perspective on my mom's issues and then I waited in the waiting room, while my mom worked with the therapist.
Today's therapist took my mom's temperature and blood pressure and then jumped right into it. She did not explain anything about testing or how long it would take. The first no no! Then she proceeded to ask my mom questions such as: 1) repeat five words (face, velvet, church, daisy, and red) and then asked her to recall these words after a minute and then after 5 minutes, 2) draw a picture of a box in 3-D, 3) count down by 7s, starting at 100, so 100, 93, 86 etc, 4) raise her hand each time she heard the therapist say the letter a, 5) list all words that start with the letter f, and generate as many as she could in 1 min, and 6) other questions like what city was she in, what is today's date, etc.
After this testing was over, she handed my mom a clip board, with paper and pencil questions. She told my mom to answer all the questions and then leave the clip board on the counter, and then we could leave. I let me mom complete the questions but I could clearly see her perspective is OFF. Then my mom got to the last two sheets on the clipboard, and she had the where with all to know that she couldn't answer these questions. They were meant for her caregiver! Mind you the therapist never told us this! So I grabbed the clip board and went out to talk to the staff.
They couldn't track down the therapist. So instead I gave them a diatribe! I feel that the whole way this test was administered should invalidate the test! The staff said that the assessments attached to the clip board were meant for both of us to answer together. I explained that was not a good way to assess a person with cognitive difficulties. An assessment should be given to the patient and another to the caregiver. I feel like I was doing assessment 101, and told then that I would give this therapist an F if she were a student in one of my classes. I was very frustrated and once again, I feel like the medical community has left me high and dry.
Needless to say, after I left the office, a few minutes later, the neurologist called me on my cell phone. He wanted to know how it went. I put him on speaker phone so my mom could follow along. I gave it to him and explained that his team needs better training on conducting an assessment as well as communicating and interacting with caregivers. As I found the staff condescending and dismissive of my concerns.
My mom's DAT scan shows no indication of a movement disorder. However, the neurologist went on to explain that many times symptoms can show up before indications are seen within a brain scan. Lovely! So why take this 5 hour test at all? The neurologist then recommended a skin biopsy. A novel study reported in the Journal of Parkinson's Disease has found that the presence of neuronal deposits of the biomarker phosphorylated alpha-synuclein (p-syn) in the brain and the skin of patients with Parkinson's Disease (PD) distinguishes them from individuals with symptoms of parkinsonism due to the accumulation of another protein, tau. This development may help the early identification and differential diagnosis of PD among the various parkinsonism subtypes.
Why undergo a five hour scan, if it can be inconclusive? Why not just have the skin biopsy to begin with, since it is provides more valid data? All I know is I am not recommending my mom do the skin biopsy. It sounds painful, and the doctor mentioned scaring and trouble healing. No thank you! Then he mentioned that starting a dopamine drug for a movement disorder may be the best way for her to proceed, because sometimes it is trial and error to what works. Again, no thank you, as these drugs can have nasty side effects such as hallucinations. He also discussed taking meds for dementia. My mom did not want to hear this and she told him she has no memory issues. She did score a 26 out of 30 today, but as I told her, to me these assessments only prove she is a good test taker. They truly don't capture the nuisances of daily living, and the issues that I see daily with her, which make it impossible for her to live independently. The doctor heard me and tried to support me, but my mom is difficult. I certainly do not want to force her into anything she isn't comfortable with, so instead we will go for a follow up appointment with the doctor in March and assess where we are at that time.
What I do know is my dad is on two memory medications and has been on them for years. I see no visual benefits from them, which is why I am not upset with the fact that my mom doesn't want to take them. If I thought there would be an added benefit, then I would be more aggravated by her decisions. So this is the state of affairs today... business as usual for Vicki, having to manage and cope with the daily behaviors of my mom.
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