My day starts early…around 1:30ish.
I wake up because either my bipap has slipped and is blasting me in the face, or my legs start hurting. If it is the bipap, then Jeff wakes up to take it off or reposition the mask. If it is the legs, I’ll shift positions and
then fall asleep. From there I wake up multiple times. It has been years since I've slept through the night. Same probably goes for Jeff.
Sometimes
I get up when his alarm goes off at 5:15am, so I can type. Often, I stay in bed until 7:00am, that way I can snuggle with my sleepy eyed children for a
few minutes when they roll down stairs. When it is time, Jeff sits me up, puts my hair in a ponytail, and then carefully... slowly... helps me walk to
the toilet. From there, he helps me to
the wheelchair, puts slippers on my feet and a blanket on my lap.
For breakfast I usually have a can of the tube food because it is easy to pour it in, top it off with some water and just
be done. Other times I might have a few
bites of oatmeal, scrambled egg or something soft and easy to eat.
The CNA arrives. She helps me shower and get dressed etc. That takes around 60 minutes. A friend will come to do my hair
and visit. There are
four different friends that will come one morning a week with other friends periodically subbing for them. The other days the CNA will help. This group of friends has been helping me with hair for 7 or 8 years! Who does that?
It is ridiculous how high maintenance I've become.
Jeff. Being a caregiver is exhausting. ALS is just as hard on him as it is on me, obviously in different ways, but he does everything he can for our family. Very few people realize all that does. He is my sweetheart.
I used the word, Sweetheart, to describe Jeff, but the term
we use more often is
ցաւդ տանեմ
The pronunciation is
(ˈtsʰɑvət tɑnɛm) or (cʿavd tanem). This is an Armenian expression
of endearment similar to Sweetheart. Its literal meaning is, "I would take away your pain.”
(Jeff was a missionary for The Church of Jesus Christ of Latter
Day Saints from 1995-1997 and served in Russia and Armenia. It was in Armenia where he learned ցաւդ տանեմ.)
