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?

Rate of Progression

"How is your mom? Is she getting any worse?"

These are two very common questions that I am asked when people inquire about my mom. I appreciate the care and concern from those around me, but I have to admit those are rather difficult questions to answer.

"How is your mom?"

Well...where do I start? The standard answer "fine" or "okay" is a far cry from how mom is. Do I take a pessimistic approach and answer "bad, she's doing bad."? Do I answer that she is constantly complaining of every ache and pain? Do I say that she is sleeping more and more, has difficulty getting up and going in the morning and is becoming more and more clumsy? There is no short answer to that question.

"Is she getting any worse?"

This is a progressive disease. It will only continue to get worse; it will not get better. It's hard, sometimes, to measure day-to-day how much "worse" she has become. The only way I can measure it is by looking back to how she was six months, or even a year ago.

AT THIS TIME LAST YEAR, mom was adopting somewhat of a rigid routine. However, it didn't control her life. When coming to our house for Sunday dinners, she would get a little antsy the closer it got to 8:00. She had adopted her 9:00 bedtime, but occassionally got to bed later. She took occassional naps but certainly did not revolve her day around her naps. In fact, this is a picture taken exactly one year ago from this month, when my brother was visiting for our birthday. We spent the day in San Diego as a family and visited the tide pools. She did complain about being hungry at lunch time and was tired by the end of the day. But she did not skip any family time for sleep. She was happy to spend time as a family. If I remember correctly, she even drove down there (with some family members in her car). It was this trip when we began to question her safety as a driver, but it wasn't until months later that she was "cancelled" (as she puts it) as a driver.

At this time last year, she was still decorating cakes. Cake decorating was one of her hobbies and talents. Last year, she was still helping me and my sister to decorate our kid's cakes. This is the last cake she decorated; it was for my nephew, Jeremy's birthday in September of 2011.

At this time last year, we were surprised to be learning that she was losing meanings of words and objects. At the pumpkin patch petting zoo, she did not recognize a goat (she insisted it was a dog) and that was surprising and concerning to us. She was starting to lose comprehension of what things were; for example, a calculator.

At this time last year, she was trying to get disability and took a leave from work. In fact, just last summer we were debating if she should leave work completely or return for the new school year (although we leaned towards her leaving permanently).

At this time last year, she was very picky with her food. Her list of what she could make for dinners (and remember what that food was) was becoming much shorter, but she still had about 15 things or so on her list of what she could make. She fussed over what we made, but would usually still eat whatever we made at family dinners.

At this time last year, she had difficulty remembering people she did not see regularly. Usually, after long explanations of who the person was, her memory would be sparked and she could put the pieces together (that was not always the case, though).

AT THIS TIME 6 MONTHS AGO, her schedule was becoming more rigid, but she still engaged in family activities over naps. We went to San Jose for Easter (you can read about that trip here). Although she was obsessive about her medication times and bed/wake-up times, she still got up early to go to brunch with us, and got up and spent the entire day at the zoo with us, with NO naps the entire weekend.

At this time 6 months ago, we were still somewhat surprised as we noticed some of the word comprehension she was losing. For example, when we booked her flight and she couldn't comprehend what a layover was or what luggage is, I was suprised and saddened, as I knew the disease was progressing. A year ago from now, she would have known what those things are.

At this time 6 months ago, the grandkid's birthday began (all the birthdays are from April on through November). She did not help, or show any interest in helping, with any birthday cakes.

At this time 6 months ago, she was "cancelled" as a driver. We questioned if it was truly necessary, knowing deep down that it was time, but still thinking that, if given the chance, she might be okay to drive short distances.

At this time 6 months ago, her menu of what recipes she would remember and make reduced to approximately 10 things. She was becoming even pickier with foods we made, but we could still usually coax her to try things and eat it. If she did not recognize a food, she might eventually remember once she tried it.

At this time 6 months ago, she spent a lot of time doing fill-in puzzles and playing computer games.

AT THIS TIME, she has become completely inflexible. Even with my twin brother arriving in town for only 48 hours, she would not compromise her naps to spend family time with us. She will not miss a nap.

At this time, we would never even consider the possibility that she would be coherent enough to drive, even short distances.

At this time, she has about 5 things that she is still able to remember and make for dinner (and most of it involves the microwave or stovetop...no oven).

At this time, we don't even expect her to comprehend what most things are that we talk to her about (calculator, luggage, etc). We are certainly not shocked or surprised when she does not understand something. She does not comprehend most of what we say. She cannot hold down a 2-way conversation.

At this time, if she does not see you on a regular basis, she will not recognize who you are, even if you are family (although once she is told who you are, she will remember IF you are somebody that she is familiar with). You can read about that in my birthday post.

At this time, she spends a large amount of her time playing computer games. She is no longer able to do the fill-in puzzles; she says her brain is "too stupid".

At this time, we are looking to have people come over throughout the day while my dad is at work, as we question some safety issues of her being alone.

And that is the long answer to "how is your mom doing?"