A Day in the Life of Deana

"What does your mom do all day?"

This is a common question that I am asked whenever family or friends learn of my mom's condition (and her leave from work).

Many patients with FTD develop a set routine for their day. Mom is no exception. Here is a basic run-down of her day.

It begins at 8:00 am. Don't try to get her out of bed before then; it won't happen unless it's a Sunday morning when she has church at 9:00 am. Sometimes she might sleep in a little longer, but her typical get-out-bed time is 8:00. If she's awake at 7:00, get-out-of-bed time is still 8:00. I'll spare you all the gorey details, but suffice it to say, she takes care of her bathroom situations first and by 8:30 on the dot, she is ready to take round 1 of her medications. Following that, she will drink her Slim-Fast for breakfast. She stirs it exactly 100 times to make sure it is mixed well.

After breakfast she takes a shower and then blow-dries her hair and applies her make-up, even if her plans for the day are simply to stay home. For many dementia patients, poor hygeine and grooming habits become an issue. For some reason, this hasn't happened yet with my mom (thank goodness!). I suspect it is because FTD patients also develop obsessive behaviors; my mom is obsessive about her appearance. She's always been very self-conscious, due to her fair skin and red hair. Her vanity has been taken to new heights with this disease. She will not step even a big toe on the front porch without her hair and make-up done. No exaggeration.

Her daily routine mainly revolves around food, sleep and medication. I mentioned that she takes her medicine and eats breakfast at 8:30 am. 12:00 pm is lunch time. At 1:30 pm, she takes a nap until it's time for medication again at 2:30 pm. That leaves the afternoon free until dinner time (if she cooks anything...another blog for another day) which is at 5:30 pm. 8:30 pm is her last round of medications. She will take her meds and then spend the next half hour getting ready for bed. Bedtime is at exactly 9:00 pm.

I know it might sound a little rigid; there is little flexibility in her routine. This is why vacationing and going out places have become increasingly difficult. From what I've read, these OCD behaviors will begin to dwindle and eventually become non-existent as the disease progresses to the severe stage.

There isn't a whole lot that she does throughout the day. Once a meticulous house cleaner, she now sees beyond the mess around her and cannot function in daily and weekly chore routines that she once had. She will do loads of laundry here and there. Occassionally she will stroll into the kitchen and do a few dishes. Every once in a while, she might clean the inside of a toilet bowl. And very occasionally she might vacuum (although there have been some issues with the vacuum...again, another post for another day). This is the extent of her housecleaning. She usually works in 15-20 minute increments. Anything more than that makes her sweaty and tired and she takes a rest on the couch.

Much of her time is spent on the couch; she has her favorite spot that nobody else is allowed to take. I've gone over many times to find her sitting on the couch, arms folded across her chest, her eyes staring straight ahead. Maybe she is lost in thought, I'm not exactly sure. There is no TV on (she can't follow a plot line); she just sits and stares. This picture was obviously not taken on the couch, but it depicts what I just described to you. Sometimes she will be listening to music. She loves oldies and "The Mormon Tabernacle Choir".

More often than she sits and stares, mom plays games. She loves card games on the computer as well as crossword puzzle games-not the kind where they give you clues and you fill in the words. But the kind where you have the word already and you fill in the space. Like these:

She will spend hours in front of the computer playing games (spider solitaire is her favorite), or on the couch filling out puzzles. It sounds odd that she would be able to do these things, given her condition, but it is actually characteristic of the disease. I've heard others make the same claim about their loved ones who also suffer from FTD.

At this point, mom is okay to stay by herself throughout the day without supervision. Eventually that will change. My sister and I both live within a couple miles of our parent's house. There isn't a day that goes by that one or both of us don't stop by for some reason or another. Even when we are there, however, mom still follows her routine. She seeks no entertainment from us. Sometimes she will converse with us, sometimes she will silently play her games.

There are days where she gets out of the house. She has doctor's appointments at least a couple of times a month. She loves to go to Sam's Club with my Aunt, usually once a month. She gets out, either with my dad or me, to go grocery shopping or to run other errands. And of course we have family gatherings and outings that she attends (most of the time). Even when she gets out, there are still the 3 criteria that must be considered: food, sleep, and medication. But in a nutshell, this is how my mom fills her days.