Sometimes it feels like every time I see my
dad I can detect a behavioural change that jumps out and reminds me that his
disease is progressing; a taunting reminder that we are losing him, piece by
slow piece, to the world of dementia.
We make note of these changes in a series
of predictable well-rehearsed stages.
The first stage is humour: a text from my mom informing me that dad has
suddenly decided that it’s OK to spit on the floor. (Most recently accompanied by an EMOTICON - her latest and
greatest tech discovery trick…) The phase quietly changes to sadness. The laughter subsides as we each
retreat into our own heads to process the implications of this newest mannerism. And then there’s the guilt. The guilt phase is fleeting and unpredictable
and shows up in a myriad of facets; sometimes I feel guilty that I haven’t been
AS patient as I know I can be.
Sometimes I feel guilty that I’m not around more to help my mom through
these changes. A lot of the time I
feel guilty that I coped and received these changes with humour.
This weekend I was faced with perhaps one
of the most poignant changes I have witnessed. Guilt be damned- it’s IMPOSSIBLE NOT to see the humour in
this situation. So I decided to
share it.
This weekend my mom took a 48 hr business
trip to Vancouver. She probably
spent half of her time away travelling to and from her destination but welcomed
the peace and quiet a work trip offered her; she did get ONE nice dinner out in
the process. I was happy to come
down and help out with my dad for a few days and glad she had asked.
We had a low key evening together that
consisted of countless retellings of the whereabouts of his “beloved wife” and
an up-to-the minute countdown to her impending return home. When I put Mia down in her bed I told
her I would be sleeping down the hall in Grandma’s room and that she was
welcome to come in and get me when she woke up. Usually I sleep in the basement so this was a key piece of
information for an anxious and early rising 3 year old.
Dad and I watched a dumb movie, ate pizza,
and at 11:30 I told him it was time for bed.
“OK…” my anxious father said reluctantly,
“Where am I sleeping? Can I sleep
with you?”
I assured my dad that he could NOT sleep
with me. That he had his OWN bed
in his OWN room where he slept every night and would be just FINE.
“Of course.”
It made logical sense to him for most of
the walk upstairs. By the time he
reached his bedroom and the quiet darkness of nighttime he had changed his
mind. I barely had my pajamas on
before I heard my mom’s door creak open and the thump of his cane as he hobbled
down her hallway to her bed.
Reiterating my previous statement was
ineffective. He looked at me
dumbfounded, “WHAT??!?! But I ALWAYS sleep in here!” he stated indignantly.
I pointed out the obvious fact that it was
usually when my MOTHER was ALSO sleeping there, not when his DAUGHTER was
sleeping there. (Note – my father
does NOT always sleep in there. He
does have his own bedroom where he spends most of the night. Although he is a bit of a night
wanderer so I have no doubt he spends at least some of the time in there…)
Again – dumbfounded.
Couldn’t he just lie down with me for a
LITTLE bit? Maybe while I read my
book?
I had a moment.
You know those moments, when you suddenly
look around the room frantically asking someone –ANYONE- is this REALLY
happening? And what’s the right
answer here? Was I fighting him
off because I selfishly didn’t want to share a double bed with him and his
night wandering habits or was I legit in my feelings of serious creepiness at
sharing a bed with my father?
I shrugged my shoulders and told him he
could lie with me for a few minutes until he got sleepy.
PERFECT. He said and LEAPED into bed.
Alright, fine, it was more like a hobble,
but I swear I would have gotten the exact same response out of EITHER of my
kids if THEY had scored the jackpot prize of getting to sleep with mom.
I lay down on my side of the bed and
attempted to read my book.
My quiet reserved father was suddenly chatty.
“So…” he asked, “What are we doing
tomorrow?”
I gave him a brief rundown of the plan.
“Ok!” he said brightly, “And where’s your
mother?”
THAT question again?
“DAD.” I reprimanded, “IF you’re going to
lie here you have to be quiet”
“OH, alright.” He said and was blissfully
silent for all of 10 seconds when his feet suddenly got itchy and he decided to
roll them both back and forth up and down the bed in alternating succession.
That’s when he got evicted.
Dad reluctantly hobbled down my mom’s
hallway and off to his own bedroom.
And I rolled over in what turned out to be failed attempt #1 of sleep.
It was a long night. Each eviction and subsequent sleep
attempt was quickly succeeded by another innocent plea and bargaining attempt
by my father. He didn’t have very
many arguments but reverted to the same two lame attempts at reasoning
1.
I ALWAYS sleep here.
2. I’m lonely.
One of which was an outright lie, the other
of which broke my heart.
It was an interesting exercise in morality;
balancing your innate need for sleep, your own guilt and compassion, and this
engrained disturbance by the whole situation. I toyed with the idea of going to sleep in the basement or
up in Toby’s room but had also promised Mia that I’d be in grandma’s bed when
she woke up.
By 4 am I finally heard the sweet sounds of
his cacophonous snoring and I knew I was safe to sleep. I closed my eyes, settled my brain, and
lay there.
Silently.
Wide awake.
As I puzzled over the fact that I was not immediately
sleeping I realized that every muscle in my body was tense and my brain was on
high alert. I supposed this is what
one would classify as a natural response to having a wandering octogenarian
with dementia intent on sleep cohabitation in such close proximity.
I’ll tell you one thing: if I were a cave man
I would have survived; I have a solid alert mode.
I supposed I did doze off eventually, after
the repeated shots of middle-of-the-night-wake-up-adrenaline wore off. I slept just long enough to make my daughter’s
7 am arrival one of pure agony. I
managed to stave her off with the ceremonious handing over of the ipad and
rolled over for a few more minutes of sleep.
Twenty minutes later I was again woken by a
little voice,
“Lyssie?!?” said my father
Good god he was up again. My fight or flight response was back in
full swing.
“What are YOU doing here?” he asked with
kindness and genuine excitement to see me. Clearly our recurring conversations in the night had long
been forgotten. He was so happily
surprised to see me that my sleep-deprived grogginess was overturned with a
sense of adoration for my poor old dad.
The sweetness of the moment was quickly
tempered by the addition of his familiar clause,
“And WHERE’S my darling wife!?!?!”
Not all changes are good changes, but not
everything is entirely bad. In
many ways watching my dad’s dementia progress is like the reverse of watching
my kids grow up; the days and months march on, marked by mini losses of his
abilities and contrasted starkly by my kids acquisition of new language and
skills. But just as time unveils
for me the true characters and likeness of who my children are, so too does my
dad’s sweetness emerge; a side that he never really let out before. And we greet both milestones good and
bad with the same familiar statement which highlights what it means for all of
us: How fast time goes. How quickly they change. How precious this time with them
is.
“Enjoy every second” the old ladies at the
grocery store say to me “It will be over before you know it.”
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