My name is Jane and my husband of 36 years was diagnosed with Dementia/Alzheimer’s about three and half years ago. This blog is a tale of our lives after “Al” (the name I’ve given Joe’s disease) moved in. In the two years since I began this blog, it's been read in over 25 countries. It really is "AL" over the world. Thanks for coming along with us down a path of uncertainty. Joe passed on November 19, 2016.
Tuesday, October 25, 2016
ALZHEIMER'S--A DAY IN THE LIFE
Joe in his new recliner having just learned he's going to be a Great Grandfather
The phone is
have to start putting my cell phone in the bedroom at night. By the time I get out of bed and stumble
around looking for the phone it’s too late.
I look at
the clock. It’s not quite eight. I wonder aloud, “Who would be calling me this
early?” Yes, I know it’s not really
early but if I’m going to get at least six hours of sleep I need to sleep in a
up for who knows how long. I’ve stopped
trying to wrangle him back into bed unless it’s before one o’clock in the
morning. All it does is make me crazy
and agitate him. Of course, there are
times when I wish I had forced him back to bed, like the morning he completely undressed
and sat on the sofa in a very chilly living room. There’s always guilt when I realize he’s done
something I could have helped with. Last
week I found his pajama bottoms in the trash.
to see me up. (I’m not sure if he even
heard the phone ringing.) He’s attempted
to dress himself and I can’t help but snicker noticing he’s got two shirts on
over his sweatshirt, both inside out. The
odds of getting your clothes inside-out should be 50/50. Right?
Then why does it happen most of the time?
I start the coffee
and we get through our usual routine; check blood glucose level, insulin injection
(Al hates injections), Cheerios and banana, handful of pills. No surprises.
across at Joe I decide he needs a shave and a haircut. So I gather up all the tools and products
we’ll need. It’s been a year since he
was last in a “real” barber’s chair. You’d
think going to the barber would be easy enough but with Al along to comment on
the barber’s ugly tattoos or the impatience of waiting his turn, it’s just
easier to go to “Jane’s Salon of Beauty”, no tip required.
By the time
we finish it’s mid-morning and we still need to shower and dress. Joe’s first in line so I get the water
temperature set, towel and shower products in place, escort Joe to the shower and
head for the bedroom to lay out the day’s clothes.
because Joe always had great taste in the clothes he chose. I remember back in the early 90’s just after
we had moved to downtown Portland, Oregon, Joe gave me a Nordstrom’s credit
card for my birthday. When the first bill came, I noted he had already racked
up quite a bill. In fact, he was on a
first name basis with the sales staff in Men’s Wear.
through my shower and dress. I’m
thinking I really need a haircut myself but it will have to wait. We have an appointment with a local in-home
care agency. I’m still not sure I want
to do this but the kids keep telling me I need to get out of the house more,
that I’m going to burn-out or go berserk if I don’t get a break from caregiving
now and then. I know they’re right but Joe
and I have been joined at the hip (so to speak) for the past three years and I’ve
started to feel like leaving Joe in someone else’s care might be disloyal, or
seem uncaring. Intellectually I know that’s not true but
emotionally I struggle with it.
Last week I
had to take Joe with me to the DMV (Department of Motor Vehicles) to get the
car registered in Oregon and change my driver’s license back to an Oregon
license. I knew the wait would be hard
on Joe and Al but it needed to be done.
long past Joe’s threshold for such things and to make it even more complicated,
I’m told I need to take the written test before my license can be reissued.
the embarrassing part. Instead of just going
back to the DMV on another day to take the test, I throw good judgement to the
wind and tell Joe if he’ll just wait a little longer we won’t have to come back
and go through the line again. He
So, I have
Joe sit closer to the testing area so he won’t feel abandoned and head in to
take the test.
minutes later I hear Joe groaning in discomfort but I can’t leave the test area
to check on him. By now I’m having
problems concentrating and have missed four questions with only three more
misses allowed before I fail the test. Joe
and Al decide they’ve had enough so Joe gets up and walks over to the test area. I look up and see him standing at the enclosure
wall looking down at me with his hands in the air motioning “Aren’t you done
it takes and I promptly fail the test. You would think I’d learn to listen to that
little voice that’s telling me not to push my luck, to know when enough is
enough. I’m not really blaming Joe for me failing the
test…Okay, so I guess I was a little.
afternoon and the kind woman from the in-home care company shows up. We agree on a plan of four hours a day twice
a week. Joe might not be thrilled about
having someone coming to the house while I go run errands, attend a support
group meeting or have lunch with a girlfriend, but if he grumbles I’ll just
remind him about how much fun it was at the DMV.
and we’re just back from dinner with the kids. It was Mexican tonight, not Joe’s
favorite but he seemed in an unusually good mood. He’s sitting in his new chair in front of the
new fireplace wearing his new slippers.
(I think we’re spoiling him.)
Maybe he’s just happy because it was a “good” day in the life.