Wednesday, November 24

just a note say that I will be quiet here for a bit, I think.

My new studio is all settled in, and I am trying to get a nice big batch of things made to offer to all of my old customers in these next few weeks. As I try to find hours in the studio (early morning now, before Mom wakes up!) I am reminded why I couldn't take care of Mom and continue Small Meadow Press in its usual fashion. Work in the studio becomes all-consuming very easily, and that simply doesn't work with caregiving.

So I am trying to keep it just within Mom's sleeping hours now, tho' I will bring lots of cards to fold while we watch a movie or hang out in the kitchen together. Every spare moment is filled these days, with my studio work and the continual paring down and moving around of our belongings as the build continues and the seasons change. I am trying not to feel the pressure that usually begins to mount at this time of year, but feel already behind (as always!).

This will be our first Christmas with Mom here throughout. Usually she would arrive just after our large Solstice gathering and before Christmas Eve. My fingers are crossed that she will be cosily settled into her new digs. More about that to come....but it is back to printing and designing for me now. I should have another half hour or more before Mom wakes up.

All is well here.

Thursday, November 11


(Mom watching the digger working on the footings
for her new bedroom)

The same day I found Margaret Massey's blog
(in the sidebar), I also found Emily's blog-
My Mom's Brain

I read all of Margaret's posts that afternoon.
And as of today, I have read every entry of Emily's
from January 2009 to September 2009, but am forcing
myself to skim now...there is only so much time in
day! But her posts are so detailed and honest
just draw me in. It is the same with most books
I have read by people who are/have taken care of
a parent with dementia. I just want to devour them,
and often do, if I can find the time. I haven't
stopped to analyze why it is....but I am sure it has
something to do with the singularly weird nature of
the experience and how sadly comforting it is to
read about a different but similar version of
your own experience.

But there are only so many books out there,
and (depressingly) most are written after the
caregiving experience has ended. So for many,
many months I have looked for caregiving blogs that
speak to me and couldn't find them. Now I have these
few and leads-through them-to many more. Thinking
back, I probably discounted some blogs because the
caregiving wasn't going on at home, as it is for us,
and I was too focused on finding someone in the same
situation as I. Rather silly of me....for the
tenderness, the problem-solving, the sorrow, the
moments are all there-no matter where the
caregiving is going on.

Friends along the journey.

I am so grateful.

Thursday, November 4

one of those days.....

....which seem to come when I have had to help Mom back to bed too many times and zip her zipper for her and find her handkerchief for the sixth time and figure out why she isn't hearing me-again, etc..... Little, petty things that are not truly that much of a hardship.

But they bring me face-to-face, over and over again in one morning, how much my dear mom has changed and lost. And how I haven't truly yet gotten used to spending my days helping her through each and every one of these little challenges and losses and confusions. And how pressing it feels to be juggling homeschooling and caregiving and the addition and everything else. And how lonely it is facing it all day after day without a friend to sympathize and remind me of my blessings and make me laugh.

I have a large-scale project ongoing to help on a physical plane-the thorough and wisely ruthless uncluttering of our home and day-to-day lives....but this rainy day (rainy days at home I love, rainy days taking Mom into town are not as cosy) I decided to go to Panera (a fast internet connection speed-what a joy!) and spend some time looking for another caregiver somewhere in the wide webby world to give me some companionship in this often lonely journey. And joy of joys I found someone. So I am sharing her wonderful blog with you, and feeling very grateful that my search was fruitful this time, after many searches that were not so.

Someone who understands can make all the difference.

Wednesday, November 3

wednesday, cloudy november morning

number of times Mom woke up last night: 2...but I only needed to go downstairs to help her back to bed once.

what we watched: Woman of the Year-Katherine Hepburn and Spencer Tracy's first movie together. Lovely.

what we had for supper: bowly bowls of left-over pasta

After a blissful four nights in a row with Mom not waking at all, she was back to her usual last night.

I had received the 24 hour clock that I ordered in the mail a few days ago, but had tucked it away with the good nights we were having. I got the idea (gleaned from some discussions on the web a while ago) to adapt the face of the clock to what Mom does at certain times of the day, to help her know better when it is time to sleep. She really doesn't understand how to tell time anymore (tho' it does shine out occasionally), but she cares very much about doing the right thing at the right time (as it gets harder and harder for her to discern, she cares more...a sad circle). I had put off this project when she started sleeping through the night several nights ago...but will put it back on the list now, I think. And share about it here when it is accomplished.

I feel a heaviness about it all coming down a bit again...

I think it is the cold weather...something my mom has always intensely disliked. She doesn't want to take walks outside anymore, tho' the house is warm she grumbles that it is cold outside, we can't tuck her up on the chaise in the sun anymore. But when the sunny, wide hall that will lead to her bedroom is built, I am hoping it will make the winters more pleasant for her-and therefore-for all of us.

In the meantime, I will try to more often make a pot of tea when she wakes up from her nap in the late afternoon, as I did yesterday. A bowl with cashews and little chocolate biscottis, our cups of milky tea and our books (tho' Mom was so happy with the snack she never got to her book!) certainly warmed up the day and led us into a peaceful spite of the election returns. : )

Sunday, October 31

sunday all hallows eve

number of times Mom woke up last night: 0 - two nights in a row...very special!

what we watched last night:
What a Girl Wants-one my my favorite
cheery movies

what we had for supper last night: macaroni and cheese, brocolli and a wee glass of wine for both of us

We will all be home for Halloween tonight and have some Reese's peanut butter cups to enjoy...perhaps a bonfire? Certainly no scary movies for Mom, tho' that has never been a part of our quiet celebration. Even the slightly magical or other-worldly movies we might have watched in the past might cause her anxiety now,so we shall see how it goes.

Saturday, October 30

all dressed up and no place to go

number of times Mom woke up last night: 0 Callooh, Callay! That must be why I am up and refreshed early in the morning for the first time in a long time. Thankful, thankful.

what we watched: the recorded Oprah show with the reunion of everyone from The Sound of Music

what we had for supper: vegetable soup and bread, water....very simple

Yesterday turned out to be a hard day. Mom really dragged during the dusting and seemed remote most of the day. She even woke up a few times during her afternoon nap, which is very unusual. It felt just like the days when my children were little as my mom went for her nap and I started turning out the mudroom, counting the minutes for my menfolk to leave for town and the resulting few hours of solitude I would have while my mom slept. Just a few minutes before they left, Mom woke up and didn't want to go back to sleep when I told her that she had a long time left for nap-time.

I was a grump when I kissed my guys goodbye and continued cleaning while Mom read in her chair in the living room. Imagine my surprise when I checked on her 15 minutes later and found the chair empty and her door closed. When I peeked in her room, she was getting back under the covers and when I went to give her a kiss she said "You were right-as always-I am too sleepy to stay awake."
: )

I dropped everything else and hied myself to the sunny kitchen sofa with a cup of coffee and some maple cookies and my book and solitude. I wallowed in it for 45 minutes or so before she was up again....all dressed, with her purse on her shoulder. I explained we weren't going anywhere and we both settled down to a quiet rest-of-the-afternoon.

Later that evening as I washed up our few dishes and Mom pondered whether she would go to bed or not, she came near me and I watched her face, seeing she was at loose ends. I asked her about it and after some grasping for words she said "I just don't feel like myself....nothing feels right." These are the hard moments....because she isn't herself and it isn't right....but she doesn't know why and I do but I can't make it better. Not much anyway. I told her that we all feel that way sometimes and I joked with her that "She certainly looks like herself...and very beautiful that is."

And I see on the monitor that my beautiful mom is awake, so I must return to the house (I am writing from my new studio for the first time!). And I am hoping that today, with a good night's rest, Mom will feel herself.

Friday, October 29

friday, the last of October

number of times Mom woke up last night: 4 (two while we were still awake and needed conversation to help her back to bed, two during the night-but she went back to sleep on her own)

what we watched: Quality Street, B & W, old Katherine Hepburn. Charming and delightful....very Cranford-esque

what we had for supper: Trader Joe's Pizza, arugula from the garden, small glass of wine for me, pomegranate juice for Mom

That will be all for now as it is our day to clean the house. Mom is the duster, I am the vacuumer and bathroom scrubber. I got Mom started on the dusting so that I could quickly post this....she decided to start in the kitchen and playfully dusted my husband as he sat in the chair!

Thursday, October 28

starting again.....

....I believe it is a rather human tendency not to communicate as much when things are going well. And things have been going fairly well, no major problems, my emotions about my mom's state are under control for now, we have a pretty good rhythm going....

But this is a caregiving journal. And when I started it, I wanted it to be both full of the little daily things that are a part of caregiving and the big thoughtful things that cross my mind and heart. I wanted it to be just the sort of place another caregiver could look forward to visiting everyday just to hear a little something from someone else walking the same path. And some place to share the deeper things sometimes, as they would certainly be better gotten out than kept in.

So I am starting again. And I will be playing with a list of sorts to fill in every day, about the day Mom slept, what we watched, anything funny or notable said, etc. It will help me to remember things, perhaps help me to see patterns, and lists are easy and satisfying. I hope that any caregivers who find my little spot here will find something worthwhile if I devote myself to writing here much more often.

Beginning again.....

Monday, September 13

Grace's daughter

My mother's mother was named Grace. As I wrote a little
bit about her at The Bower a few days ago, I found myself
writing "Grace's daughter" when I mentioned having to end
the post to go and pick up my mom from respite care. Ever
since, that way of thinking about my mom has been running
through my mind and my heart.

Choosing to take my mom under our wing was our
natural (tho' weighty) response to her her children,
also simply as humans reacting with compassion, I believe
(Does that sound too simplistic? For I know you can be filled
with great compassion for someone in the same situation and
not make the same decision...)...there were many layers.

Now there is a new one, because now I think of my
grandmother, watching me care for her daughter.
That is a new and beautiful-and sobering idea. My
mother, seemingly unquestioningly, took care of my
grandmother in our home for the last nine or ten
years of her Grandma Grace did not have
dementia, but she had had a leg amputated and
my grandfather had died a year before she came to us,
so she couldn't live alone in St. Augustine any longer.
Probably alot of questioning went into the decision-
making and the living out of it....I was in my teen years
and didn't pay attention to those undercurrents.

The dementia makes it a very different sort of
experience for me than my mom had with her mother...
and yet, my mom took care of her mom...and because of
that, I got to know my grandmother more deeply than I
would have otherwise. And it is comforting and
strengthening to me to think that I now have
Grace's daughter in my care and can feel Grace's
approval and love.

Wednesday, September 8

Hello! I am Lesley, your cruise director.....

...that's what it feels like sometimes around here...
rather often around here, actually. Especially on days like
today when I am bit under the weather and also have tasks
like book-keeping to take care of.

My sweet Mom comes out of her room after her nap and
sits down heavily in the chair next to me, then sighs and
looks bored. I suggest her book, but that hasn't been
a popular activity lately (I shall have to do a little subtle
sleuthing to see if she is having any trouble with reading,
or if she just needs a new book). And indeed, she rejects
that idea. I am not up to a walk...mentally or physically. It
takes mental strength to go on walks with Mom as I must
match my steps to Mom's slow ones and, inevitably the
same observations and questions come up in each and
every walk....but today I am also too tired physically
(just allergies, I think!).

So, I have been researching off and on today, trying
to find an attractive, inexpensive latch-hook rug kit. My
mom and her mom actually used to do these in the '70s
when my grandmother lived with us. It was one of the
few crafts that my mom spent any time with. She doesn't
knit, crochet, sew or even mend. I wonder if you lose
those skills with dementia? They, somehow, seem
un-losable...but as my mom never had them, her
hands are often unoccupied these days. Perhaps
the latch-hooking will soon fill both her hands
and her empty moments.

In the meantime, there is always dishwashing
(what she is doing right now-thank goodness my son
didn't get on it as quickly as he was supposed to!).
And we clean the house together now-Mom is in charge
of dusting and I do the vacuuming and bathrooms.
Folding clothes is a good one, especially if the things
are small....but I shall be working on storing up
some pleasant, independent activities for Mom
when books, tv, and chores pall. This has been on
my mind for months now, as the dementia shrinks
the already small list of things Mom likes to do.

For now, I will keep the beautiful magazines
nearby to hand to her in boring moments, and
the hummingbirds are still here for her to watch,
and I am sure I will get up the strength to go on a
walk tomorrow.....And, of course, I am aware that
that there is much more to this than the simple
problem is my guilt over not taking
more time to figure it all is my sadness
about the diminishment of my mom's
interests and abilities.

P.S. Indeed, my son accompanied my mom on
her walk today and I had the good fortune to win
a UK ebay auction for this rug kit. I am so thankful...
there are some shockingly ugly rug kits out there
in the world!

Wednesday, August 25

just a....

...little note.

I am thinking that sometimes this blog will
serve as a place to simply record small moments
with my mom that I will not want to forget.

Like tonight, watching a sweet movie together
and noticing that she was sitting with her arms
wrapped around her bent leg, the foot resting
in the chair...a very familiar pose for her that
I haven't seen for a long, long time.

And after we kissed at her bedtime, she said
"Good night m' dear"....also something very
familiar, but long-missed.

Glimpses of her old self.

Monday, August 23

good days

I write this as I wait for my bath to fill, having just enjoyed
a nice supper on the porch. My mom is in the kitchen with my
husband, doing the dishes (a favorite chore). We have had
good days for four days running...Mom hasn't been waking
up at night and she has been happy. I have tried to figure out
what we are doing to possibly contribute to the sudden sleeping
well...but every evening has been different-wine one night
and not the next, a movie at homeone night and a social outing
(with caffeine!) another, sometimes a walk during the day,
sometimes not. As a caregiver, you can start to feel as
superstitious as a baseball player in trying to figure
out how to have these sorts of welcome outcomes on a
more regular basis...but when there is no answer, I just
let go and appreciate the gift of them.

a few hours later...

Wouldn't you know, after coming down from
my bath, saying good-night to Mom and while
watching a movie with my deario, Mom has woken up
twice. The first time she came out into the living room
with her lipstick on so nicely and her shoes and shirt
on over her pajamas...she was sure there was something
she was supposed to be doing and somewhere she needed
to go. I helped her out of her clothes and shoes and loved
her up and sympathized with what she was feeling after
awaking from a dream. Lights out and awhile later during
the movie I noticed her light was on again. This time, I
went to check on her and she was trying to find
"whatever was making that noise" in her room.
This is all pretty typical, and I suppose our
little interlude of peaceful sleep is over...
atleast for tonight. was a good day.

Friday, August 20

life on earth

A whole month has passed since I wrote here
(thank you deeply for all the warm messages sent
my way in response to my last post), a whole month
of mostly depressed spirits and emotion bubbling up
over and over again....but the sun is shining again in
my heart and I am just very simply
grateful for it.

I have been afraid to write expose my
raw feelings, the depth of my struggles as a caregiver,
the little and big things that fill my mind and my heart...
but I think that has passed. Yes, there are people facing
much harder realities than mine and there are people facing
my reality and handling it in a more peaceful way than I. But
I need to write this journey and I need to be honest about
it, so that is what I will do here. Perhaps this is one of the
good things that will come out of the emptiness left as
friends have disappeared and illusions of many kinds
have been must get it out somehow.

I may write everyday....sometimes I imagine finding
a blog online written by another woman caring for her
mother with dementia and trying to do so positively
and beautifully and authentically...and how comforting
and connecting it would be to follow the ins and outs
and ups and downs of her daily life. I have searched
and searched for such a blog....having yet to find it, I
will just have to make what I am looking for...knowing
it will do me good and hoping it will do something
beyond that.

But now, it is almost time to leave the library and
pick up my mom from her afternoon at respite car....
as good a reason as any not to edit this rather unexpected
post. I thought I would be catching up aboutwhat I have been
reading and the latest chapter in the Great Toothbrushing
Debate-and so I shall. But my heart was in charge of
my fingers today (perhaps it always should be?) and
this outpouring feels like another of the healing
rain-showers our parched part of the earth has
been given lately....and that reminds me of a poem
I shared at The Bower last year...

And between shower and shine hath birth

The rainbow's evanescent glory;

Heaven's light that breaks on mists of earth!

Frail symbol of our human story,

It flowers through showers where, looming hoary,

The rain-clouds flash with April mirth,

Like Life on earth.

Mathilde Blind

..."like Life on earth"....that is what I am living, what
we are all living and what I want to put down here
in the days to come.

Sunday, July 18

mothering mother

It happens all the day long...the suggestions I have to
make to my mom for the simplest of activities. At their best,
they feel like reminders to someone who is forgetful. At their
worst they feel like nagging. At their saddest they feel like
I am mothering my mother. It seems to happen
most often on the days that my mom is most like her old
free-spirited self....when direction from her daughter
must strike a sour note somewhere within her.

It always feels inharmonious to me....when I gently
remind my mother to brush her teeth after breakfast
and she insists she has already done so (tho' she has never
left the room and is just remembering doing so last night-
time is an odd thing now for my mom and isn't measured
in the same way it used to be). Sometimes I let it go, feeling
that our relationship is more important than the state of
her teeth. Sometimes I am concerned about her teeth and
show her the bone-dry toothbrush and she brushes, tho'
grudgingly, never quite believing me.

It is an uncomfortable dance.

Today, after we had a Sunday treat of brunch and a
old movie on the telly, my mom was at a loss for what
to do. Unfortunately, my mom never had many pastimes
beyond reading....crosswords are beyond her now and it
is too hot to be outside...and tho' reading continues to be
a great pleasure, today is one of those days when whatever
she is reading becomes too real to her and she feels the
need to put it aside. So she asked me what she could
do with herself. I suggested a walk around the house
(something she has always done and what she does
here on the hot days) and when she started to get
her flimsy sandals (I need to buy her more supportive
ones and get rid of these-a constant task, weeding out
the inappropriate things to her more fragile life now)
I suggested her tennis shoes. She objected and wanted
to know why and I reminded her of her need for balance
and support. When she scoffed at that, I reminded
her of her fall and her sometime wobbliness. I never like
to do that, and perhaps I shouldn' subdues her
and touches her pride, I think. So then I pointed to my
own feet, in my Birkenstock sandals and told my mom that
at 51 my feet are also needing more support these days.
She grumbled, but asked where her shoes were, I pointed
her towards her room and she put on her shoes and
promptly forgot the exchange.

But it brought me here, feeling the need to put
into words the anguish of having to mother my mother.
It really started many years ago, long before we had
any inkling of the dementia. In fact, it has been ages since my
mom has mothered me. She is sweet and grateful
and funny most of the time...but she is no longer
maternal....and I am missing that.

Someday, I will more gracefully accept this and so
many other hard things that are a part of this journey.
But today, I am just missing my mother.

Wednesday, June 30


It was my mother's 79th birthday on Wednesday.
We celebrated in little ways at home and in town.
Mom is blessed to still have many of the friendships
she has had most of her adult life. Dear friends
who continue to spend time with her, make
her laugh, show her that she is loved...
even without the golden thread of shared
memories to bind them together.

Last year on my mother's birthday, we were moving her
into the assisted-living community. We had made her little
apartment lovely and tried to put a happy and positive spin
on the whole experience. But I had wondered and feared
for her future there, as I slept on the couch in her tiny
living room that first night, and woke up alteast three times
as the ambulances drove to and from the convalescent
center in the long, dark hours. It was very hard to
picture my mom living there...

...and a year later, she is living here. An ambulance
may drive by in the night, but only rarely. My mother
is now surrounded by fresh air and sunshine and
blackberries in the garden and baby chicks peeping
on the porch. She is happy. We are happy she is
here. I am not the most objective of observers,
being so close in every way to her daily life...but
I do not see much change in my mom from last
year's birthday to this, and for that we are
so grateful.

She is sleeping so well and fully recovered
from her fall, entering into family life more than
ever and very content....

It is me who is drifting a bit. From the intense
days of nursing her after the accident on Christmas
Eve, through the crafting of new rhythms and routines,
I have arrived to these quiet days of Summer....
I don't want to read books about dementia caregiving,
as I did in January, February and March-I can read
those again when things get hard. And I can't find books
to tell me what to do now that my mom doesn't need me
to be learning and figuring out so much to help her
through her days....and my sons are so nearly-grown
and independent....nor can I turn towards another
creative venture, for there isn't that much freedom
and things can change at any time.

So I am re-learning how to find joy and satisfaction
in the simplest of pursuits...gardening, baking, tending
myself and our home and our family. It is surprisingly
challenging. So different from what it was with little ones,
and what it would be like if we had an "empty nest".
I am mothering my mother and cultivating the patience
necessary to live each day with her memory loss.
That is the new ingredient.

I am writing this at the library today. In front of me
is the stack of books I gleaned from the biography
section (through CAS). I am thinking that it might
be helpful for me to read about other women's lives,
as I am examining my own....a line here, an idea
encourage me in these lovely, sunny, peaceful days that find
me confusingly unsettled and seeking comfort and
inspiration....which I am sure to find.

Friday, June 4

a musical ear

Life has been peaceful with my mom lately. She is
content to spend much time reading and watching the birds
from the screened porch. She is sleeping fairly well (not too
many trips downstairs in the night for me, to help her back to
bed) and watching just enough old musicals to keep her happy
and not so many that we feel as tho' we might go around
the bend! The music she hears is in her beloved movies,
on the kitchen radio, on the ipod radio my brother filled
with her favorite music or in the car when we drive to
and from town.

But it wasn't always so. She had only been at
the assisted-living place for a few months when she
started asking me to check under the bed and in the closet
for the radio she kept hearing. For awhile I thought she must
be hearing music from the new neighbor next door (tho' I
should have known better since it was always so quiet in that
place!). My mom was getting quite distracted with the persistence
and repetition of these songs..."Old Man River", "Edelweiss",
"God Bless America", many more. With some careful
questioning, one evening I determined that she was hearing the
music in her head. Back at home that night, I spent hours
researching her symptoms and desperately hoping it wasn't
some sort of psychosis. What I discovered was that my
mother had developed Musical Ear Syndrome.

She had all of the conditions that are often present when
it occurs:

1. Often the person is elderly.

2. Generally, the person is hard of hearing.

3. Often the person lacks adequate auditory stimulation.

4. Almost always the person has tinnitus.

5. Often the person is either anxious, stressed or


-from Hearing Loss Help

I didn't think we could do much about numbers 1,2 or 4 (tho' we had
already addressed the hearing loss with some very fine hearing aids).
We hoped that setting up an ipod radio in my mom's room, filled
with her favorite familiar music, would help the "too quiet
environment", but she never remembered to turn it on. And
everywhere outside her room remained so quiet and insulated, there
wasn't much hope for change there. And soon enough we realized
that her low level of anxiety wouldn't change as long as she was in
an institution (however lovely), and as much as she had tried
to make a go of it.

It is one of the many reasons we brought her home.
As soon as my mom arrived, I made sure she had a peaceful
but sound-rich environment. Just the everyday sounds of our
family talking with one another, calling the animals, opening
and closing doors, going up and down the creaky stairs, the
birds singing, the kettle whistling, went a long way to filling
her ears in a good way. When it felt "too quiet", I would turn
on the kitchen radio the classical music or jazz that comes
from our local NPR station....

And after awhile we realized that my mother was no
longer complaining about the songs playing over and over
again, nor was she waking up in night because of it. For the most
part, except for occasional complaints at night about the noise
in her ears (which I think might be the tinnitus), it seems to
have disappeared. I know that it may return, but what a relief
to have something so troubling to her be so easy (relatively)
to solve.

Now music is only a positive in her life.
Tho' I notice that it is a little trickier for her to find the
harmonies she has always been wonderful at adding to our
singing together (something we don't do as often as we could),
she sings along to all her old music (thank goodness I love it,
too!), and enjoys occasional concerts. Neatest of all, she remains
open to all kinds of music, especially since I have started to make
a point of not always listening to news or interviews ("talk, talk,
talk" as my mom says) during our hour-long drives into town.
Tho' she was a little critical of some songs when we first
started listening, she is much more open-minded after many
drives watching me tap my hand against the steering wheel and sing
along as my favorite station played all sorts of oldish songs...."Lay
Down Sally" (she made a face when this first came on, was singing
along after a few verses and declared at the end that she thought
it was a wonderful song), "Low Rider "(can you imagine?), old Elvis
Costello. Best of all was a warm afternoon when I had picked her up
after respite care, and I had the top of her VW convertible down and
Simple Minds "Alive and Kicking" blasting (that song has to be loud!)
on the radio as we drove the pleasant streets of Williamsburg...
smiling at each other, hands keeping the beat.

P.S. Thank you Mary Anne and Gigi for the UTI information.
This time it wasn't that for my mom, but I will always be on the watch
for it.

P.P.S. These photos were taken early this Spring on Easter Sunday

Tuesday, May 18

pillole, pastillas....

...or pills as they are more commonly known, have become
a part of everyday life since my mom came to live with us.
My mom was always proud that she didn't have to take any
prescription medicine until recently, and I am glad to say that
supplements outnumber the pills even now. But I have never
liked the words "pills" (which puts me in mind of Lottie's little
speech in the beginning of Enchanted April about
her last name

"I am Mrs. Wilkins.
"She did not like her name. It was a mean, small name,
with a kind of facetious twist, she thought about its end like
the upward curve of a pugdog's tail. There it was.
-Elizabeth Von Arnim

Even less did I like dispensing all of the pills from their plastic
containers night and morning and having the bottles clutter
up the counter. First I looked at the typical pill dispensers
(plastic and very ugly and more than we needed in the way of safety).
Then I searched the web long and hard for a set of tiny drawers
that could divide up the "servings" of pills morning and night.
I couldn't find anything that suited, but got a wonderful idea
when I spotted a little set of drawers made of
matchboxes on etsy.

We decorate little matchboxes as favors for our Solstice
gathering every December, and I had several left over, so I made
several more...decorated with bits of handmade paper and
decorative bits from catalogues and my old misprints.
Then I printed out a sheet of labels that I cut out with
deckle-edged scissors and pasted to one side of the
matchbox. Perhaps I could figure out how to make the
sheet downloadable here if there is interest?

Once a week I gather all the pill bottles and my pretty
stack of boxes and fill them for the week ahead....usually
while watching the telly. Although, truly, it only takes five
to ten minutes! Then I store the bottles away again for another
week and the little boxes line up nicely in our
herb and spice drawer.

Every morning at breakfast and in the evening after supper
I pull out the appropriate box and place it at my mom's place
at the table. She often comments on a picture she sees on the
box and I can't tell you how pleasant it is to slide open the
little box rather than having to open and close the numerous
bottles morning and night.

And it is so easy to toss one or two in my purse if we are
going to be away from home at pillole time. If things change
for my mom and we have to worry about her access to the pills,
we can easily put a safety latch on the drawer. But that is not an
issue at the moment. And something that used to a bit tedious
and irritating to me is easy and sometimes beautiful.
I intend to make some little boxes for my own
supplements very soon and banish all plastic
bottles from my day-to-day.

P.S. My mom's unusual confusion lasted only the day,
with a little fever coming to her in the evening. I have still
not gotten used to that connection of bodily dis-ease with increased
mental dis-ease and don't think of it at first. It will come to me
more quickly, I know, as I get more accustomed to this
life of caregiving.

Wednesday, May 12

trying.... both senses of the word.
Trying to make the days safe and happy for
all of us...and also finding it so trying sometimes.

We have had many good days lately, days
when my mom offered to the dishes (something
that she always took on as her chore when she came
to visit, but something she hasn't thought to do in
all these months she has been with us) She
even thought to take in the wash
one evening.

But this morning, she came to breakfast in a confused
state, saying things that didn't quite make sense, finding
even the cereal box heavy to lift. She has remained so
throughout this day. I just fixed us a lunch full of protein
and veggies and she is off for a nap...and I can't help
but hope that she will wake up in a clearer state
of mind.

This is the most trying-as in "hard to endure"-part
of living with dementia....not knowing what each day
will bring and what I will have to bring to it to make
the best of it. I am working on acceptance, but am
still in the place where it strikes dread in my heart
when my dear mother says and does things that don't
make sense. Dread and fear are natural reactions,
I know, but they aren't helpful companions and I
am glad to leave them behind as quickly
as I am able.

Friday, April 30

a good day

Last night my mom woke only once...well...only once woke
and needed gentle direction to go back to sleep. So, a good
beginning to the day.

In the morning we met around the kitchen table with
our wonderful builder and architect, as we discussed the
final touches on the little "wing" we are adding to our
house for my dear mom's comfort and safety.
More about that in the future.

What I want to remember about today is sitting at
the kitchen table in the afternoon, just my mom and I,
a cup of tea for each of us, she with her book in hand
(but not reading), me with a papery handful of envelopes
(the checks and notes from my customers after the
Last Sale), the bright skies and wind outside and
the peaceful and music-filled inside.

I showed my mom an especially pretty card
which she went ahead and read. Then she said, "There
are alot of people who are going to be sad that you are
closed." I agreed with that. Then she asked, "Why
did you close your business?" Tho' it wasn't the entire
truth, I quickly answered, "Because I am taking care of
you and Caleb and Doug and that is plenty."
That satisfied her...and I must say, it was
satisfying to me, as well.

It is rare for her to plumb the depths these days.
So it is a good day when a mother and daughter
can have a little heart-to-heart, however brief.

*the photo was taken a few weeks ago, when the lilac
was blossoming....we keep the rocking chair outside
for my mom, and move it near whatever is
pretty and blooming at the moment*