Thursday, October 25, 2012

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 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?"


  1. Wow, even her hair looked much better a year ago, and her smile in the picture looks more like the mom we knew.

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  3. This entry is a great way to mark her progression, as hard as it may be to read. I think I may try doing the same with my mom's PPA. I just know it will be tough to see on paper. My mom, too, decorates cakes! We always wonder whose will be the last one. My daughter's birthday is in two weeks and we have one in December and February. I have a feeling February may be the last one, but she may make it to mine in April.My dad now writes the Happy Birthday and the name on the cakes for her.
    Thank you for sharing your feelings and your mom's illness with everyone.

    1. How funny that your mom decorates cakes too! :) That was kind of a big indicator to her that the disease is progressing, her loss of interests in cake :(

    2. I meant, an indicator to us, not her ;)

  4. Wow - I can relate!
    Thanks for the comment on my blog so that I could find yours!

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