New Format - FXTAS Updates

I'm starting up this blog again; now I will post updates on life with my husband's FXTAS.

Daylight Savings Time threw my routine off this morning.  I woke up early, like always on Sunday, so I can attempt to get to 10:30 Mass (I say "attempt" because depending on how the morning clean-up, etc. goes with Vince, I don't always make it out on time; on those days, I receive Communion with Vince from the Eucharistic Minister who comes to our home every Sunday). 

Of course, at this point in Vince's 14+ years of FXTAS, Daylight Savings Time means nothing to him, physically or mentally.  His body just kept sleeping a good extra hour—still on standard time!  So, no Mass for me today ....

When he wakes up, I start my grueling routine of clean-up and meds before the aide arrives at 9 a.m. (but actually later—he is never on time).  I change the Depends and wash up his bottom while he's in bed (I can't get him out of bed by myself).  Then I sit him up in our adjustable bed and give him juice with a straw; sometimes he drinks a lot; sometimes not at all.  Sometimes he will take in the juice and hold it in his mouth forever, or until I suction it out of his mouth.  Amazing how long he can hold juice in his mouth.  I give him three pills, separately crushed in yogurt or pureed canned fruit—one for bladder control; generic Ritalin to wake him up a little; Namenda, recommended by Dr. Randi years ago to help slow the deterioration in his brain, which seems to have held him stable for several years.  According to Dr. Granny (which is what I call myself since I've been forced to become a makeshift doctor), I think the Namenda works because it soaks up a glutamate compound, or something like that, and I've read that there is too much of a glutamate compound in the brain in FXTAS.  So this makes sense to me.  I have a natural fear of medications, so I need to have a good reason for using them.

This morning, Vince only made it through two meds; then he clamped his mouth shut with some fruit in it, which I eventually had to pry out of his mouth (used a toothbrush to brush it out).  Lately, he has been NOT taking one or more of the morning meds, occasionally; I'm keeping a record so it doesn't get out of hand.  None of them are meds that will hurt him if he misses an occasional dose.

In the middle of the meds routine, I wash Vince's face with his special zinc soap recommended by the dermatologist because he has seborrheic dermatitis (difficult, flaky skin - I call him the incredible peeling man).

If we have time before the aide comes after all this, I roll Vince over on his side and prop up his back, so he gets pressure off his butt for a while.  I get my coffee (yay!) and sit down and read morning prayers to Vince.

When the aide comes . . . to be continued. More about the routine later—I'm probably boring you all to death.  Vince is downstairs in his recliner now where he spends the day in front of the TV.  It's just another normal day in the abnormal FXTAS life:)