Sunday, January 23

on the mend

The day started with a shower for Mom
(I put a kitchen chair in the shower for her to sit on as I wasn't at all sure that she was steady enough to stand-the new shower in the addition will be wonderful with it's teak bench), after a night of much more sleeping hours than non-sleeping hours. And the day is ending with Mom sitting up in her usual chair in the living room, sipping soup and watching the Australian Open. She is very clear and making jokes and enjoying herself again. I am so glad to see her bright-eyed face back in place. I am so glad we are cosily at home and not elsewhere....when the doctor told me on the phone yesterday that she thought Mom had a virus and that I should take her to the emergency room if she got any worse....what a dreadful feeling those words inspired. But we were lucky enough for it to go the other way.

Mom spent much of today sleeping, and I knew she had turned the corner when I found that she had slipped around the bed gate and gone into the bathroom all by herself. I had forgotten to take the monitor with me into the kitchen when I washed the dishes and in those few minutes she woke up and made a break for it. We bought the bed gate last year to keep her safely in bed when she was so disoriented and unsteady after the fall. When she is unwell, just seeing the gate usually stops her from trying to get out of bed by herself....if she is getting a little better, the sound of gate being used to pull herself up or the rattle of it as she tries to figure out how to open it gives me time to dash to her side....and when she is all well, it is an oddity to her that she simply goes around. I will probably use the gate overnight tonight and then put it away again, until next time.

Tools have become so important as we try to keep this caregiving life in healthy balance. I was able to spend much of the day resting on the sofa watching tennis with the audio-video monitor always in view so that I could be at my mom's side just as soon as I saw or heard her awaken. It was my constant companion yesterday and spends every night next to my bedside. The video component makes it possible for me to watch in the night when I hear that Mom has woken up and see if it is just a little trip to the bathroom, or a walk to the window to part the curtains to see if it is still night-time (not that that has significance anymore) and then back to bed, or if she thinks it is time to get up and begins to make her bed and get dressed. It saves me alot of trips up and down the stairs, and gives my mom a little measure of independence that I don't think she would have if I was constantly popping in her room to redirect her. When we bought the monitor last year after her fall and I watched the green light that stays on whenever it is on and listened to the constant hum of the speaker as I tried to fall asleep, I was so depressed, thinking how the sacred quiet and darkness of our bedroom had been invaded and that my life would never be the same. Well, my life will never be the same, but I have come round to being usually thankful for the monitor and all the other tools and strategies that help my mom and I make this life-that-will-never-be-the-same the best it can be.

PS Thank you for your kind comments and emails. They are so appreciated.

Friday, January 21

this morning

...or this moment of this morning (for my moods can change so
quickly), I am aware of the sunlight through the living room window
as I type and I am grateful that the washer and dryer are working
and that I have homemade granola to look forward to when
I get around to breakfast.

Life is funny.
Yesterday was a town day, starting with a simple follow-up
 visit with my mom's wonderful doctor to tweak her supplements
after some bloodwork....Mom to respite, me to Home Depot to try to
finish up with all the choosing and ordering of materials for mom's
little wing that is nearing completion...then two precious hours in
the coffee shop, deeply enjoying a latte and the creating of a blog
post at The Bower. In that post I wrote of how out-of-sorts January
has been, but how it was starting to flow again. And truly, I felt happier
than I have in a long time yesterday, in spite of Mom's little
decline, in spite of other stresses and worries. Mom seemed really
worn out on the drive home, but I put it down to the early
doctor's visit and no nap.

I let her take a nap when we got home (even tho' it was 7 in the
evening-I usually try to keep to her daily rhythm of one long nap in
the afternoon, thinking that more naps might throw off her nightime
sleep even more than it already is, and she usually just doesn't take a
nap on town days), but I woke her up for a little supper and tennis
on the telly. She didn't eat much, but again, I put that down to her
disorientation after the late nap....she was quite mixed up. Now I know
that she was mixed up because she was getting sick. The night hours
were a blur of trips to the bathroom, soiled sheets and clothes, then
lots of waking up, incoherent. Mom is hard of hearing, so when
her hearing aids are out, she can only hear if you speak very close to
her ears. All through the night, and still this morning, she hardly seems
to be able to hear me at all....tho' it is probably more that she can't
comprehend me in her heightened confusion. It is very hard to see
her weak and her face so far away. It is very
hard to be responsible for another person's
health and well-being 24/7. And yet...

At this moment, I am clinging to peace. I have a call into
the doctor (the doctor who yesterday was celebrating the fact that
Mom almost never gets ill). I have the monitor right next to me and
ply Mom with water everytime she stirs. I am hoping it was something
she ate yesterday, and that that soon she will be feeling well again. I
am trying to remain positive about the steps I took last night to avoid a
UTI after all the messiness. I am trying not to succumb to the worry
and dread that so easily come with caring for my dear mom with her
frail mind in her aging body. And as the sunlight has disappeared as I
write, I am also hoping it returns, because everything is easier with its light.
But even a cloudy day is better than those dark hours after midnight...and
I reminded myself of that last night when sleep wouldn't come in
the snatches of rest between tending Mom.

Sometimes during the long hours last night, I would think of the
dear people that I know are tending their loved ones, or overseeing
their care from near or far, or who might just be sleepless and worrying
too. And I am thinking of you this morning, and wishing for all of
us a little more light.

PS Forgive the odd formatting....I can't take anymore time to fix
it today.

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.