Since mom’s diagnosis (in March of 2012), she has been going in for check ups every 6 months or so. This past Monday was another 6 month check up.
The first few visits were fairly beneficial. We were educated a lot on the disease. Last visit (in January), the Dr. was able to recommend medications to help mom with the rigidity and OCD behaviors that come with this disease. But the more and more we go, the more fight mom gives and the less we feel we are getting out of the visits.
It’s not that UCLA isn’t doing their job well. It’s just that there is no treatment for the disease. She is pretty much off the scale that they use for semantic dementia. She can’t identify much of anything from picture anymore. The one category she can still somewhat identify is the pictures of animals. She cannot name the animal correctly (she either doesn’t recognize it as anything or she classifies every animal as a dog) but she still categorizes most pictures as “animals”. Other pictures shown to her (house, comb, toothbrush, pictures of famous people, etc) elicit a blank stare and no response.
The Dr. reviews with us the symptoms of semantic dementia and reaffirms how mom’s behaviors are consistent with the disease. At this point, we are all too familiar with the symptoms. We’ve done our research and taken good notes. We know what is to come in the future. Not to sound like “know-it-alls”, but there isn’t much that they can tell us that we haven’t already heard. They can’t give any estimate of how long until mom reaches the next phase. Every case is individual. Semantic dementia is known to be one of the longer-running dementias; he said it could last as long as a couple of decades. With mom’s rate of progression, I’m not sure that it will last that long for her. In fact, I pray it doesn’t. I don’t say that in a cold-hearted way; rather, I mean it quite the opposite.
Mom’s quality of life is gone. The only thing she has to look forward to each day is her computer games. She has no interest any longer in her grandkids or even visiting with her family for Sunday dinner (or any dinner). Taking care of her is quite stressful. It is heartbreaking to see her decline more and more and it is heart wrenching as we sit helplessly by and watch the person we once loved so dearly slip further and further away. Dementia is a cruel disease.
For my own tracking purposes, I would like to note some characteristics of where she’s at in this disease, as of July 2013 (to compare with 6 months ago):
- Weight: Mom weighed in at 134 lbs. on UCLA’s scale. This is 6 pounds less than 6 months ago, but about 8 pounds more than a month ago when she was having her eating/gall bladder issues.
- Eating: Mom is down to maybe 5 things that she will eat. She starts the day off with Slim Fast (unbeknownst to her, we have substituted this with Instant Breakfast); she eats a turkey and cheese sandwich everyday for lunch; she will snack on Poppycock, fritos, strawberries or pineapple for her afternoon snack; for dinner she may drink an Ensure or she might make herself some tortellini and mixed vegetables. Rarely will she eat anything else, but she will still eat hamburgers and burritos as well.
- Daily Activities: Mom occasionally, very occasionally, do a load of laundry here or there. It usually only includes her own laundry (not dad’s) and maybe some towels. I never see her do dishes anymore. She sits in front of the computer before lunch and after nap to play Spider Solitaire. Sometimes she will go on walks but only if she has a purpose: a trip to the bank, grocery store or a visit to her sister. She rarely wants to come to family dinners or family functions and only does come when she is forced.
- Personal Hygiene: She is still able to groom herself. She showers almost everyday. She puts on her make-up and styles her hair everyday (though it may not look as nice as it once did). She still dyes her hair every 6 weeks on the dot and she brushes her teeth frequently. I have noticed that she is not as diligent about washing her hands when necessary. For example, in the hospital she washed herself with a paper towel in some private areas and wasn’t going to wash her hands afterwards (ewe!).
- Conversation: It is becoming increasingly difficult to hold a conversation with mom. She doesn’t comprehend most of what we say. She seems to pick out only key words in conversations that she understands but cannot comprehend the whole of what we are trying to say. Many times, she gives us blank stares when we talk to her and we receive no response. She will talk a mile a minute about what she wants to talk about, but she seems to hear nothing we say in response. Her speech is somewhat slurred together and mumbled, particularly when she can’t seem to find the right words to communicate.
- Behavior: She has become a little bit more confrontational. I first noticed this in the hospital and noticed it again the other night, when she was insistent on loading her food in their trailer refrigerator (packing for a trip); she broke one of the shelves on the fridge and when my dad tried to fix it, she kept getting in his way and insisting he put her food in the fridge “now”, despite his attempts to redirect him. At one point, he was physically trying to move her back and she raised her fist at him. So far she hasn’t struck anybody…let’s hope it stays that way.
- Sleep: She wakes up around 8:00 or 8:30. Sometimes she will sleep in late, until after 9:00, if she’s had a rough night or a rough day before. She still naps at 1:00 on the dot until 2:30. She goes to her room by 8:00 to take her medicine and tuck herself into bed. Dad says she gets up at 10:00 pm every night to go to the bathroom and then goes back to bed. Sometimes she’ll wake up in the middle of the night and trying talking to my dad.