Sunday, January 9

a new year

As I start again here....after my Advent Sale,
after all of the holidays...I find myself hesitant
(as always) to write here. The thing is, what you must
know about the life of a caregiver of someone with
dementia (or the life of this particular one, atleast) is
that it is a pretty constant battle against
low spirits, negativity and grief.

And when you are in a good place, you don't
necessarily want to get outside of it and write
about, you just want to enjoy and appreciate
it. We had been on a fairly steady plane for
a bit with Mom. But I can't avoid the fact that
she is losing some ground. Expected, of course,
but still a sad surprise when it shows itself
in the forgetting of the simplest things
(where her bedroom is, what the names of
things are, remembering that breakfast it
eaten in the morning...) and so many other

Hardest of all are the moments like one that
happened yesterday (and that happen more
and more often these days) when I was on the
sofa in the living room watching "Billy Elliot".
We can't watch or listen to anything around
Mom that has anything distressing in it. It
can upset her in the moment and we also
learned that these things can stay with
someone like Mom and cause anxiety long
after the event is forgotten. So we squeeze
in our news and movies like Billy Elliot
to those hours when Mom is asleep. It can
set up some tension, having to keep a quick
finger on the remote in anticipation of Mom's
numerous awakenings. So when Mom woke
up early and dramatically from her nap
and emerged from her room dressed in her
long, fur-lined coat and hat and gloves
with confused questions about where
we were going, I felt rudely drawn back
into the oddness of living with dementia,
and found myself doing everything I could
to brush away these weird cobwebs and
bring Mom and my day back to normal
as quickly as possible. Mom's imaginings are
still not normal to me. I suppose I always feel
rudely drawn back into it....even after a two years
of the daily contact with it, each tiny episode
comes with a shock and a reluctance and
certainly not with the sense of humor that
might help me through it all
more peacefully.

Perhaps yesterday was worse than
usual because I had actually spent the night
before away at an old friend's house, after
an annual party with more dear friends. It
was all so normal and festive and free. We all
watched the unexpected snow falling down with
joy and wonder (not the grumpiness my mom
greets the falling snow with), and talked and
laughed with abandon (without the editing
and care we have to show at home) and I
could move joyfully and embrace my
friends without the constant observation
and wondering critique that goes along
with anything demonstrative around

I suppose the truth is that I am beginning
the New Year realizing how much we have
lost, how much energy (mental and physical
and emotional) we have to use to make it
all as good as it can be, how things are probably
going to be even harder this year than they have
been already. And before this all starts to sound too
selfish and dreary, I must express two things....
that just beyond and right beneath my own first
self-centered reactions to all the work and weirdness
(and amplifying them, no doubt) is knowing that my
mom is aware of it all (on a certain level). She
can't express it clearly, but it is very clear
to her as it is to us that she "is not herself"
(something she says now and then when
she is struggling to put her finger on it).
Agonizing, when I let myself pay attention
to it, which I can't do very often. And the
second thing is that as long as my dear
mom is walking this hard, hard road, I will
gladly walk it with her. The gladly might sound
strange as it might imply without complaint
...but I think the gladness is in the doing it
out of our love for her. A good day is when
the gladness goes beyond the reason for
the doing and into the way of the doing.

The challenge of the New Year
will be to dance this dance with my mom
as gracefully, healthily and happily as
we are able.

Wish us luck! (Or should I say
We wish the same for you.

And now I am off to (hopefully) watch
the end of Billy Elliot.


melissa said...

Hope you can fit in the rest of the movie, and turn things off in your head for a bit (while your mom naps). That tiny space of fantasy that a good book or movie gives can make a huge difference.

Take care.

Anonymous said...

Yay! Lesley's back!

During your absence I was hoping things were okay and that your art life was going well.

Lovely post here. I really needed to find such a heartfelt post from a fellow caregiver tonight; it's been a rough week. Thanks so much for the great timing. :-)

Take Care,
Meg (Margaret)

Lesley Austin said...

Thank you, Melissa, for your hopes....I did get to watch the end of B.E. Even better, Mom has not woken up all evening and I got to steep myself in the new Masterpiece Theatre. Lovely! You are right, it is very helpful to "fly away" somewhere else now and then.

And dear Meg, I am so glad my rambling post was of some help to you. That is everything. I have wanted to respond to your last few posts (so good!), but have been rather scattered and not good at following up. I will visit soon and hope the days ahead will be less rough. Like this evening without an awakening from my mom...we all need a little space to breathe and shore up for the next wave.

ginny said...

Maybe you should look into finding a volunteer to stay with your mom, even just a couple of hours a week, to give yourself a break. I volunteered for years with the Helen Keller Foundation helping seniors (and their caregivers). I loved doing it, and it gave the blindperson and the caregivers a chance to escape from the weight of the day to day.

I even took my pal to the casino for the afternoon. 99 years old, blind and at the slots. A fun outing for all concerned. There is support out there if you need it, even just to catch a movie.

Lesley Austin said...

Dear Ginny,
Please know that I do get respite from the constant caring...twice a week for a whole afternoon and special times like the sleepover and party at my friend's that I mentioned...short vacations. That is really what I was trying to get across, I think, that it is the emotional/mental strain of the oddness of dementia that is tough, even when you are keeping life as a caregiver pretty balanced in other ways.

It is a spiritual challenge, I suppose, to be working at....

Anonymous said...

A loving, deep and beautiful post. I am wishing you a quiet, restful evening and sending up hope and prayers for this year. Yes...wishing for grace, peace, the blessing of many small sweet joys...and strength. {hug]