Great, but not unexpected news from Marcia’s mammogram. There were no signs of any cancer recurrence, which means she is 20 months cancer-free. This good news is not something we take for granted! In a few weeks, we see Marcia’s oncologist and surgeon, but expect continued good news on the cancer front.
After the mammogram, Marcia and I went to Columbia Hospital in NYC to meet with her neurologist. Since our last trip to NYC, Dr. Honig’s office moved from the first to the third floor and is co-located with the Parkinson’s unit. We don’t have much exposure to Alzheimer’s and even less with Parkinson’s. Seeing so many people with broken bodies and minds was a sobering and sad sight. In spite of the progression I’ve seen in Marcia, she’s still pretty mild compared to others we saw. But I did get a look at a possible future and realize why living one day at a time is a good thing. Today will always be a good day as the “tomorrows” will not be as good as today.
As I write this, two weeks after the appointment, I’m still not sure how I really feel about the appointment. While Marcia’s speech has clearly deteriorated since our last visit, Dr. Honig’s evaluation was mostly sort of status quo. In other words, from an Alzheimer’s perspective, she’s not too bad (other than language). I think we (friends, family) expected a change in medication to stronger dosing and perhaps recommendations about in-home care as many of us are concerned that Marcia may not be safe when alone in our house. I think the key takeaway for me from this appointment is that those of us who know Marcia well see she isn’t really close to being who she used to be. But there are others whose progression is more advanced than Marcia’s. Alzheimer’s has a different scale to measure progression than I do.
Status quo, or not much change, was not the result of a deep battery of test. Dr. Honig observed her arms, legs and back, looking for bruises. There were none that would indicate any recent falls. She was asked pretty basic questions: who is president of the US, what day it is, what floor of the hospital we were on, etc…. Apparently, those are questions people with moderate to late stage AD have a hard time answering. Marcia knew the answers, but she had a lot of trouble answering the questions. She could not say Barack, or Obama. It was apparent she knew what to say, she just couldn’t say it. The date was not the twenty forth, but 2-4 and the year is two-oh-one-three.
I think where I’m not completely honest with myself is my reaction to this doctor’s appointment. The last two years have been really hard for my family. So much of what Marcia used to do, she can no longer do. And her case of AD is mild? The reality is that things will get worse. Significantly so. And for how much longer? As I mentioned above, we saw a lot of people with AD and Parkinson’s in the waiting areas and it wasn’t too hard to determine which camp most people were in. Two of the people sitting with us clearly had Alzheimer’s, and both had at least two people with them. One lady had her caregiver with her and either an aunt, sister or friend. This woman hummed constantly (as does Marcia, but did so a little louder), kissed her hands loudly and often and told almost all of us in the waiting area that she loved us. While she was kind and sweet (as is Marcia), she was further along than Marcia, though she spoke very clearly. This helped me better calibrate Alzheimer’s according to the signs of the disease, not the magnitude of change in Marcia.
After his examination, I asked Dr. Honig what he would have done differently if her memory had tested worse. He might have changed to a stronger dose of Aricept, but that’s about it. We can’t do anything to slow the progression and we are going to have to deal with our communication challenges while proactively making decisions about her safety. In the short term, this really only means putting a hand rail on our front steps (only 3 steps, but Marcia has a difficult time negotiating them, or at least would feel more comfortable with them).
In closing, while today is not what most people would consider a relaxing or fun vacation day, I enjoyed spending time with Marcia and marvel at her strong will and wonderful attitude. We had a nice lunch between doctor’s appointments. We often eat in silence, but watching her concentrate so hard on whatever she’s doing is inspiring to me. She was clearly focused on eating and very deliberate but relaxed. She laughed at a small joke I made in the waiting room at Columbia hospital, and she was very animated and seemed in very good spirits with Dr. Honig. While it can be painful to watch her try to communicate, it’s amazing to me that she tries with such apparent lack of concern over what others might think.
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