Wednesday, April 9, 2014

Some Notable Changes

At one of my early visits with mom at UCLA, the doctor and nurse practitioner discussed semantic dementia with my dad and me and what it entailed. One of the difficulties with the disease is obsession about certain things. Obsessive was definitely a struggle that we had with mom at that point. For the past few years, mom had been obsessed about quite a few things. A few things really stand out to me that would drive us a bit crazy which mom would constantly obsess about:

1) Her “fibromyalgia” (I put quotes on it because we aren’t sure if she was experiencing real pains or if they were phantom pains brought on by the disease). Mom complained constantly about every ache and pain that she felt and was very exaggerative when she thought she was feeling some sort of pain shoot through her body. Almost every conversation revolved around these aches and pains.

2) Church. She loved to talk about her Mormon pioneer heritage with anyone and everyone. She would talk about church/beliefs with anyone she encountered to the point where sometimes it was a bit uncomfortable. She was determined to bring her friend from up the street, Maria, to church with her. She was obsessed with The Mormon Tabernacle Choir (she would BLAST the music from her stereo, sometimes singing along).

3) Her job. Everyone she met had to hear the story about what a great teacher she was and how they “picked” on her at work, eventually leading to a suspension and then a resignation on mom’s part (of course all of these problems were due to her disease, we just didn’t know it at the time).

Jill (the nurse practitioner at UCLA) told us that as the disease progressed, these obsessions would slowly go away. It would be a blessing and a curse: a blessing because we had become wary of so many of these obsessions and conversations; a curse because it just means she is farther into the progression of the disease.

A few weeks ago, a realization dawned on me. These major obsessions have gone away. There are some other obsessions that have remained; for example, her daily rigid routine, her hair and make-up regime. She talks about the same things to everyone she sees: how much she is changing in her 50’s, how upset she is about not driving, asking people to take her to Sam’s Club. Indeed, those are obsessions or fixations for her at this time. But those few things that once consumed her and used to drive us crazy the most have nearly disappeared.

Sometimes the changes are so gradual that, unless we look back to compare, we don’t realize how much mom is changing. Most definitely, the disease has progressed a lot in the past 6 months. The disappearing obsessions being one thing, her appearance being another. Her eating is becoming worse and worse; her daily menu now consists of: one “Slim Fast” in the morning (which we’ve swapped with Instant Breakfast to get some nutrition in her), a sandwich (usually pb&j) for lunch, an Ensure for afternoon snack, a Slim Fast for dinner (every 3rd day she will eat a solid meal, either a sandwich or tortellini, and skip the Slim Fast) and an Ensure before bedtime. Rarely does she deviate from this diet, despite all of our efforts to get her to eat actual FOOD. Her speech has drastically declined; even more since my last post about it.  All of these changes make me a bit nervous as I sit and wonder, what is lurking around the corner?

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