I rediscovered this essay on my computer. The details it discusses date back approximately seven years. Gregory's Dementia/ Alzheimer's was fairly advanced but not nearly as advanced as it was to become.
Re-reading it made me sad at realizing how much I miss Gregory. It made me realize how much being able to nurture him meant to me (and to him.) It also made me feel good about what a good job I did to support the person I loved so much then, more as his abilities continued to diminish, and at least as much to this day after his death.
The essay ends with "What I wonder is: "Will I ever again be able to live in the moment in which my now and my world is all that matters?" I dread and yearn for that time!" I honestly did not anticipate that Gregory would die, let alone before I did! It just felt like my life in that form would go on forever. Funny how one's mind convinces us that life is forever and that change, while it happens, doesn't!
Thoughts
on a Life
Perhaps
my success is that I have been able to create for Gregory, a life in which he
can truly live in the moment, in which his now and his world are
all that matter.
I have
organized our life fully and carefully. This gives Gregory a certain sense of
consistency and control and allows me to make sure that what needs to be done
gets done, especially because I am the one who has to do it ... all. It allows
him to enjoy his life day to day without having to worry about any
details.
The
purpose of this essay is not to brag about how much I do, to say look at me,
but rather to show you what must go on so that Gregory can live in his moment.
How often have you stopped to think about all the things you do to run your
life and that of your loved ones? These thoughts on what it takes for us are
mine, shared.
Gregory
wakes up, cleans up, and puts on his morning "Sweats" which I laid
out the night before. He has breakfast, which I assemble and put on a tray,
including cereal with bran buds, fruit, and soy milk; a glass of orange juice;
yogurt; a mug of tea; a few prunes, apricots, and dates; a handful of assorted
raw nuts; and on alternating days - sausage, Canadian bacon, or tinned fish on
crackers. On the days he can, he cleans up after breakfast but usually leaves
several things on the counter, not knowing where they go. On the days he
cannot, I take over.
Then
Gregory sits at his desk spending several hours with the New York Times, which
I have arranged to be delivered every day. My idea to do this was successfully
based on the fact that Gregory still reads, likes his news, but is no longer
able to navigate his computer (we used to get the newspaper on-line.) I kidding
call this concept "using a brand new technology" since we have never
had a newspaper delivered to our door before this."
Some days
Gregory can select what he wants to wear, other days I have to help. He is not
easily able to relate a temperature number to the season to what kind of
clothing to put on. Sometimes I have to notice that his underwear is on
backwards. Sometimes he attempts to put on two pair of jeans so I help him
through. Often he forgets his belt, which confuses him about where to hook his
cell phone and keys.
So far he
can still make a large salad for his lunch. I help when he gets confused and on
some days clean up after him. Often we plan a lunch out around our errands. He
always goes with me because I cannot leave him home by himself any more but
also because we continue to enjoy each other's company. I decide what he will
order as well as what I will order for lunch (same for dinner out for that
matter.) I used to ask: "Do you feel like having meat, chicken, or fish
tonight?" That no longer works so I just decide. Usually he "goes
on" about what a good choice I made and that makes me feel good.
Recently
I put together a process for "interviewing, letter of applicationing,
background checking, and letter of agreementing" a Companion to spend time
with Gregory. I created a process for this with which I was comfortable and
which insured the Companion's, Gregory's and my "rights and
responsibilities." Part of this includes a brief history of Gregory's
dealing with Alzheimer's, what the Companion might encounter, and how to deal
with it.
I
currently have two college students acting as Companion, each of whom spends
4-8 hours a week with Gregory. This enables me to get out for a meeting or
appointment when I have to leave Gregory home alone but also gives me some free
time away from my 24/7 responsibilities, just to be able to go out and
"play" by myself or with friends.
The
interesting part about having a Companion is that I feel like a mother with a
young child having to add to my "duties" scheduling, planning,
thinking ahead, dealing with actual and potential Companion late arrivals,
illness, cancellations. But it has been working well. Gregory has been enjoying
the company of "young blood" which provides a different environment
for him than having me around 24/7. So this seems to be working well for both
of us.
I plan
and prepare dinners at home, set the table, serve the food, dress and salt and
sauce what needs dressing, salting, and saucing. I turn on the music we always
have at dinner, deciding Chopin, Beethoven, or Sting. After dinner I clean up,
sometimes Gregory will dry, I put things away, wipe and "daily spray"
the granite counter.
He will
ask, "Can we have a little something?" referring to watching a saved
TV show, or a NETFLIX movie. I decide what we will watch and run the TV/DVD
controls. I make the popcorn or cut up some fruit to have during intermission.
After watching a DVD, I put it back in its envelope returning it to sender.
I select
an assortment of chocolates for him to have at bedtime. He loves his
chocolates! I suggest when it is time to take a shower. I put out new towels
when needed. I point out toothbrush and toothpaste when he gets confused over
their use or location. I remind him to put on body lotion and help with the
parts he cannot reach. I apply the cortisone treated tape to a few areas on his
hand and leg that have begun to show psoriasis.
We turn
down the bed together after I have brought our water glasses in from the TV
room and put his nighttime meds in a small bowl on his night table as well as
putting tomorrows out on the kitchen counter. I pull down the shades, turn off
the lights, check the thermostat, make sure the front door is locked, and set
the alarm (to wake me in the event of his wandering in the middle of the
night.)
We read
for a while and then lights out. Sometimes he can figure out how
"on/off" works and other times I have to pop out of my side of the
bed to go over and turn off his lights. The nice ending to every night is that
we fall asleep together holding hands.
Of a day,
bills are received, reviewed, and paid. Mail is collected, sorted, and handled.
Same with e-mail. Birthdays are remembered, as are important anniversaries of
family and friends. Great nieces and nephews and GodChildren are gifted on
their birthdays, at Christmas, on graduation, at confirmation, when bar (or
bat) mitzvah, and eventually will also be gifted if they choose to marry and
have children.
Household
equipment is maintained, serviced, repaired. Walls are washed, erased, or
touched up with paint. Clocks, thermostats, and timers set. Laundry sorted,
washed, dried, folded (sometimes Gregory helps with the folding but I have to
double check because he mixes up the variously sized underwear and sox.) Our
housekeeper is instructed, directed, and at times corrected (we are grateful
for her help.)
Refrigerator,
pantry, and larder are stocked and a running list created so everything needed
is remembered. When one thing is used up, another is in waiting, and when taken
off the shelf has its name added to the running shopping list. Meals are
planned executed and eaten. Dishes are set, cleared, washed, and stored.
Friends
are e-mailed, telephoned, chatted with, entertained, joined for dinners out.
Parties are planned, invitations sent, R.S.V.P.s received, menus planned, food
purchased and prepared, buffets set, food replenished, drinks poured, dessert
served, clean up accomplished. When we get together with friends, I tell my
stories and I tell Gregory's stories. He enjoys hearing his stories told since
he cannot manipulate the words to tell them himself.
A pair of
reading glasses has been located in each room, labeled for ease of
redistribution when Gregory inadvertently looses or moves them around, and new
bedtime books selected when he needs a new one.
Doctor
appointments are made, symptoms checked out, lotions applied, cuts covered,
bruises watched. Dentist cleanings, eye examinations, skin doctor, neurologist
appointments made, driven to. Information is discussed with doctor, results
listened to, actions for the future remembered and taken as needed.
Again, the purpose of this essay is not to brag
about how much I do, to say look at me, but rather to show you what must go on
so that Gregory can live in his moment.
• • • • •
When he
wonders about later today or tomorrow, he asks as well as he can (language
difficulties considered,) and I tell him again our plans. He will reply with
"Oh Goodie" or the like. Often he asks again or is surprised when the
plans take place. This periodic wondering seems to be enough for him when
it comes to regarding the future.
The past
comes up now and then. It is a little more complicated as usually it
causes a guessing game about what he is trying to remember. After thirty five
years of living with and knowing him, we usually are successful in remembering. Sometimes,
not!
Perhaps
my success is that I have been able to create for Gregory a life in which he
can truly live in the moment in which his now and his world
are all that matter. The problems and confusion of dealing with
Alzheimer's Disease/Dementia arise when I ask him to live in my world or our
world or when he tries to live in our world and then stumbles, feels
confused, and sometimes gets frustrated when he realizes that he is no longer
able to do so. I am continuing to learn how to avoid this but am not
always successful. I am continuing to learn how to live in his world but am not
always successful.
Things he
knew how to do yesterday, he does not necessarily know today, and may or may
not remember tomorrow. I never know what to say or not say, to ask or not
ask, to wonder or not wonder. I never know if he understands what I mean when I
ask him to help me with something. Using words like above, below, in, out,
over, under, etc. are a crap shoot. As mentioned in a previous post, I
do not know which is worse: when he doesn't understand something or when he thinks
he understands something.
Life
continues to be a thin, thin line between trying as much as possible to live
our life as normally as possible ... or better ... to help him live his
life as it is normal to him. Life continues to be a thin, thin
line between treating him like a five year old while at the same time
respecting him as the 64-year-old adult he is. He senses the difference and
when I am able to do so successfully he doesn't mind. When I am a little
impatient, he gets a little short with me. Can you blame him?
Every
night before he goes to bed, he recites aloud the three words he read in a poem
and had me print on a post-it to put on the side of his night table drawer:
Simplicity, Patience, Compassion. As I hear his repeating his mantra, I recommit
myself to being as good of a caregiver partner as I possibly can be.
What I
wonder is: "Will I ever again be able to live in the moment in which my now
and my world is all that matters?" I dread and yearn for
that time!
yes, it's far more than a full-time job! and one I bet you're glad you did <3
ReplyDeleteThanks Susan. As you know, when you love someone, their support becomes the majority of your life!
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