A
Portrait of Doug and Sally
My
grandfather, Doug, has always told me stories from his life, the same ones many
times, scenes on repeat: when he and grandma first met, their wedding day,
having Uncle Doug, losing Uncle Mark, their fights when grandma walked out on
him. Why does he tell them again and again? Is he trying to grasp a reality
that isn’t there? Or does he really not remember that he’s already told us
these a hundred times?
Some
of the stories that follow are exactly how they were told to me, some were
imagined where major details were left out; some of the images are from
photographs and some from my imagination. My task is now to patch these stories
together and try to make sense of them, stitch together my Grandparents lives.
I want to capture these moments in time, hold on to them, and not let them slip
away from me, even though the people are.
It
was the summer of 1949 at Fish Creek Pond in the Town of Saranac Lake, Upstate
New York, just south of the Adirondack Mountain range.
Doug's blonde hair was slicked back, the white from
his tee shirt, carefully tucked into his favorite pair of jeans, popped out
from under his black leather jacket, while a skinny cigarette hung from his
lips--all to try to look older, and cooler, than he did. His baby face
gave the impression that he was years younger than the twenty three years he
had lived. Doug was walking on the dirt road that snaked through the tents populating
the campground with his friend, Don. They were discussing which flies they
would use fishing the next morning. Doug’s heart started racing, palms became
sweaty, and throat a little dry. A pair of girls were walking toward them, the
one on the right took Doug’s breath away. He stopped in his tracks and held out his hand
to stop Don who had not seen the girls that he did.
Sally
wore her golden brown hair in a high pony tail that swung at the rhythm of her
long stride along with the swish of her long skirt. She was on her way back to
her parents’ campsite with her sister, Bobbi. Though Sally was the younger of
the two, she was also the better looking one. While Bobbi had a boyish look to
her and her cheeks bulged out like a chipmunk hiding an acorn for safe keeping.
Sally was slim and beautiful; she looked like she came right off the front page
of Vogue magazine. Even at the age of
fifteen she could turn the head of any man or boy, no matter their age. Sally
was updating Bobbi on what she wanted to do with her life.
“I’m
going to be a nurse! It’s perfect for me.”
“But
what about getting married and having kids, a family?” Bobbi questioned Sally’s
decision.
Sally
considered this for a moment but then decided that she’d have plenty of time
for that later, she was still so young. She had time to do both. The girls were
approaching a pair of boys standing in the road ahead.
“That
one’s mine!” Doug exclaimed as he pointed at Sally.
“What?
Which one? What are you talking about?” Don was confused. He hadn’t seen the
girls; he didn’t follow Doug’s point.
“The
younger girl, the one on the right. The better looking one. She’s mine.” Doug
directed Don to the girls.
“Oh…”
Don caught up.
“Don’t
even think about going after her!” Doug yelled at Don with a glare.
“OK!
I won’t. Don’t worry about it.”
Once
Doug muscled up the courage to talk to the girls, they became friends almost
instantly. Their friendship quickly progressed into a relationship they feared
would end when they left the camp at the end of that summer.
Doug
and Sally sat on the sandy bank of the pond, his arm wrapped around her shoulders,
her head resting on his chest, listening to his heart beat in between breaths
of the future.
It
was December 2008 in Central Pennsylvania.
I
was on the phone with my grandparents, Doug and Sally, who were driving down
from New York to attend my graduation at Penn State University.
“How’s
the drive going, Grandma?”
“Oh,
it’s getting a little sloppy out. Snow and slush. But we’re doing okay.”
There
was a snow storm threatening the entire weekend: it had already dumped several
inches on us the night before, three to five more inches were expected tonight
and tomorrow, and then up to another foot of snow plus ice and wind on Sunday.
Mother Nature always finds a way to make things interesting.
“You
guys drive safely and I’ll see you when you get here.”
“Yeah,
well, Papa’s driving so we’ll be okay.” An explanation that they were driving
down to Penn State for my graduation followed a drawn out yeah. Then this: “So
how’s the weather down there in North Carolina?”
I
heard Papa yell from the driver’s seat. “Sally, that’s where Erin lives, not
Kate!”
For
as long as I could remember, my mom has been an administrator at various
nursing homes. She was good at what she did: her boss would move her around to
nursing homes that needed help getting back to state code. If there wasn’t a
dementia floor, then she created one. She knew just about all there was to know
about dementia and Alzheimer’s disease and because of this, she admitted
Grandma Aunt Claire, my grandfather’s sister, into her nursing home when she
was diagnosed.
Visiting
Grandma Aunt Claire before she died two years before this taught me how to deal
with people with dementia, how to act when they are confused, scared, mad, and
what to say. When they make a mistake of identity, confuse you for someone
else, try to correct them in a way so that they don’t feel bad about it.
Dementia patients often get embarrassed when they don’t know or remember
something that they should, like they’re granddaughters’ names. I told Grandma that
I was sure Erin, my sister, would be glad to tell her what the weather was
like, but I’m in Pennsylvania. Though I’m sure it was much warmer down there
than it was here.
This
was the first time that I saw her start to show signs. The first time that I
knew. She had always mixed up our names and would go through the list until she
reached the right one: Loie Lisbeth Lauren Erin Kate, sometimes even throwing a
dog’s name in the mix. When she forgot our birthdays and apologized a month or
two later, we learned to just go with it. This was how Grandma Blakelock was
and we loved her anyways. But she never mixed up who we were. She always knew who I was even if she forgot my name,
until now.
I
knew the different stages and signs; I also knew that it progressed at
different rates for different people. How soon would it be before she was at
the next stage? When will she become more than just “our crazy forgetful
Grandma”? Of course, she had always been that, pretty much. But now I knew that
it wasn’t just old-age forgetfulness; it was Alzheimer’s disease. For Grandma
Aunt Claire, it progressed pretty quickly: within months she was already in the
late stages and my mom just tried to keep her happy, letting her smoke outside
the building and giving her a drink at night before bed, just like she had
always had. Is it going to be that fast or slower and drawn out like her
thoughts surely were now? How long had it been going on before this? I felt a little
bit of my heart break as I thought how hard this was going to be on me, Mom,
Grandma, but worse, Papa. He just went through this with his sister, and now he
has to do it again with his wife, his world, his love. My heart broke for him.
My
grandmother’s dementia stayed like that for years. I never knew who I was going
to be – every time I visited her I was someone different. One time I was
myself, the next I was my mom. One time my aunt, the next my great aunt. My
sister, then my cousin. I accepted that this was how it was going to be –
that’s how it was with Grandma Aunt Claire. I’d rather be whoever she thought I
was, instead of her not knowing who I was at all.
It
was 1953 in Upstate New York.
Sally
was on the phone, sitting in a white slip, her lips painted red, her sleek hair
pulled back in a bun. It was her wedding day.
Doug
was being drafted in the war. Sally told him that he wasn’t going to go to war
and leave her un-married and without any kids.
Doug
asked, “What about nursing school? You wanted to be a nurse. You loved it.”
“I’d
give that up in a heartbeat for you. I loved nursing school, and helping
people, yeah. But I love you more.”
Sally
was on the phone with her sister. Bobbie was trying to boycott the wedding. She
didn’t agree with Sally giving up her dream so soon. Sally tried to reason with
her:
“You
don’t get it, Bobbi. I love Doug. I want to be his wife and have his kids. I
want to be a family with him. He has to go off to war, so it has to be now.
Dreams are for dreaming about, life is for living.”
Though
she didn’t agree with her decision and would never forgive Sally for abandoning
her dream, Bobbi went to Doug and Sally’s wedding. Sally was a beautiful bride,
of course. Doug was as handsome as ever. They looked like the perfect couple
and were madly in love.
Nine
months later, their first of five children, Douglas, was born. Doug went into
basic training but was discharged before he saw any action; his mother was sick.
He returned home to care for her and his family.
#
It
was 2010 near Albany, New York, my mom’s house.
“Kate,
we need to talk.” Mom said this in the tone that is only ever followed by bad
news. This was what she said before she told me that Erin had a brain tumor,
when Grandpa Cobb was diagnosed with cancer, when he died, and when Grandma
Cobb died. Nothing good ever came from those words.
This
time it was to tell me that Grandma Blakelock was officially diagnosed with
dementia. I wasn’t sure how to react to this news. It wasn’t really news, of
course. I already knew that Grandma had dementia; I’ve known this since my
college graduation. Maybe I just wished that it wasn’t true all that time.
Well, yes. I did wish that, of course. But was that why I didn’t know how to
react? I was sad but I couldn’t cry. And the fact that I couldn’t cry really
scared me. I never had a problem crying before; bad news always came with
tears. Even just my mom saying I couldn’t go to a friend’s house made me cry
when I was younger. But this moment didn’t. What was wrong with me? I don’t
know.
My
mom told me that Grandma was now in the next stage of Alzheimer’s disease. She
was forgetting to pay their bills. For fifty-seven years she had always paid
the bills, even after she retired from the State Police Department, she paid
them with her and Papa’s retirement money. But now their heat, lights, and
water were being turned off unless my mom intervened.
Later
that night I called Grandma to chat. It was one of the rare times that their
phones actually worked. It was only a short conversation but it was long enough
for me to see.
“Hi,
Grandma. It’s Kate.”
“Hi
Sweetie. How’s things in North Carolina?”
“Erin
can tell you that, I’m in New York with mom.”
“Oh.”
A long pause followed by,” so how’s Jonathan?” Jonathan is my sister’s husband.
I knew enough to not correct her too much, so I just went with it.
“Oh
he’s good, I think.”
The
difference here from other conversations was that her idea of who I was didn’t
change. She knew my name was Kate, because I told her. But through the whole
conversation (and it went on after this) she thought that I was my sister, it
didn’t change
It
was September 1985 and Doug and Sally’s doorbell rang.
Doug
opened the door, Sally a step behind him, two men in crisp military uniforms
were on the other side of the threshold.
“Is
this the home of Mr. and Mrs. Blakelock?” the dark haired one asked.
Sally
trembled and collapsed in tears. Doug answered in a shaky voice, “Yes, it is.”
A lump formed in his throat, his breathing stopped for a second.
The
two strangers looked down at their feet, took off their caps. The light-haired
one spoke,
“I
regret to inform you…”
“Stop.
Don’t. Finish. That. Sentence.” Doug’s voice could barely form the words.
Their
youngest son, Mark, was in the army – he was at basic training and the only one
of their children who was in the service. They knew it had to be him, but
couldn’t hear the words. It made it too real. They couldn’t handle it. How were
they going to tell the other kids?
One
of the uniformed men tried to speak again, but it didn’t work. Doug wouldn’t
look them in the eyes. They put out their hands to shake his, but Doug just
closed the front door, stepped back and embraced Sally. Doug and his wife sat
on the stairs, in shock, crying, sobbing. They didn’t eat anything for the next
day and a half, not knowing what to do now. There weren’t any classes or
workshops on this kind of grieving, sure there are “support groups,” but how
effective were they? Doug was never the type of person to go seek help, he
could handle anything and everything God threw at him, he thought.
It
was 2011; I was in my first semester of graduate school in Idaho and talking to
my mom who now lived in North Carolina on the phone.
“So,
how are Grandma and Papa?”
“They’re
doing okay. They’re not eating enough and Papa keeps sending in money to these
scam contests, giving away half of their money. I went to see them last
weekend, brought Grandma some disposable underwear, she refuses to wear them
right now, but at least she has them. I tried to convince Papa to stop the
contests, but of course he won’t listen. We all get our stubbornness from him.
And Grandma stopped taking her blood-pressure medicine.”
“So
what do we do now?”
“Well,
all we can do is just be there for them. And give them the help when they’re
ready to ask for it. You know that we can’t push them. They won’t do anything
they don’t want to.”
And
that was the next stage: not taking needed meds and incontinence.
I
guess, maybe, I should be happy that it’s taken this long to advance. I should
be glad that it’s slowly progressing, a year for each stage. But I find it hard
seeing a lot of good in any of this. Maybe because it means I’ve got more time
with her. Is it really worth it, though?
It
was 1995 and back in Upstate New York.
Doug
and Sally were in yet another fight. It doesn’t matter what they were fighting
about, just that they were fighting again. Sally stormed out of the house. This
wasn’t the first time and it wouldn’t be the last, either. She always had a bag
ready near the backdoor.
Doug
watched her drive away. He could have chased after her, like he did so many
times before, but he knew it would be a waste of energy. Sally would ignore
him, go to her friend, Barbara’s house, and then come back to him after a day
or two.
They
fought so much that Doug and Sally didn’t know what they were fighting about
anymore. They just always got on each other’s nerves, down each other’s
throats. But they always made up.
#
It
was March 2013 and Mom was telling me about the fight that she and Aunt Lisbeth
had with Uncle Paul:
“It
all started when he got meals on wheels for Grandma and Papa, which is great,
but Uncle Paul didn’t tell anyone when he scheduled it. So we had to figure out
all the details and make sure that Aunt Lisbeth could be there when it happened.
You know how Papa is.”
“Yeah,
he’d totally flip out if some stranger showed up, even if it was to help them.”
“Yeah,
so we had to figure out all the details. Well, we did and everything went well,
it’s all set up. But Uncle Paul blew everything out of proportion, like he
always does. He said we went behind his back, which we had to since he wouldn’t
answer the phone. Last time I was up there and went to Uncle Paul’s; he had to
sign bank papers, and he flipped out, started yelling nasty stuff at me.
‘If
you didn’t move down to North Carolina to raise your granddaughter because you
think that no one else can do it, then you’d be here to take care of them.’”
Listening to this, I pushed my own tears back.
I vaguely remembered what it was like when Erin had her tumor. I remembered
what it was like when were at Julie Blair; there was so much stress at that
nursing home that none of us were getting any sleep and because of that we were
always sick. My mom though, her arthritis was always bad, and the only thing
that could fix it was hip replacements. She couldn’t take time off for these
surgeries, even though she was the boss. They wouldn’t even let her take one
day off—not even Christmas day—without calling her on the phone. I knew that
Cora, my niece, was the reason why she moved when she did, but not the main
reason why she moved in the first place.
My
mom continued recounting the fight with Uncle Paul, “Up until now, I had sucked
it up, didn’t say anything hurtful, didn’t stoop down to his level. But when he
said that I couldn’t take it anymore. I yelled back, ‘If you almost lost your
daughter to brain cancer then you’d do the same thing, move to be closer – not
to take care of Cora. You know that’s the real reason why I moved. And you know
that my job was killing me up here.’ Then I left. As if that wasn’t bad enough,
what he said to Aunt Lisbeth was worse. On her answering machine, he yelled she
was as dead to him as his brother. Long story short, we’re not speaking to him
now.”
I
didn’t know what to think after this. I was furious and shocked that he would
even think that, let alone say it out loud to her. Our family was always one
family. Sure, there were fights; we didn’t always like each other. But everyone
always made up.
It
was 2009, Upstate New York.
Doug
and Sally had another fight; it was the same as all the others, except for one
thing.
This
time when she was supposed to run away to Barbara’s house, she ended up at her
son, Paul’s, house. Sally didn’t understand how it happened. She was on her way
to Barbara’s house but ended up at Paul’s. She doesn’t remember what happened
in the middle.
This
was the first time that happened, but it wasn’t the last. This time Sally left
in anger, and they were lucky she showed up where she did. The next time she
just wandered off at the grocery store and ended up at the police station.
Doug
was scared to death; he turned his back for one minute and she was gone.
#
It
was November 2012, I was in New York on fall break—every year our family got
together for Thanksgiving. Except this year, Uncle Paul wasn’t going to be
there.
I
went to Grandma and Papa’s house to help Mom out. It was worse than I thought.
The floor was so sticky my shoes suctioned with every step. The sink was
overflowing with dirty dishes that had food caked on. Last time I was here, the
air was saturated with home-cooking and Grandma’s blueberry cobbler. This time
it was the smell of urine. To see all of this, it broke my heart. I couldn’t
believe that they were living like this, that Papa would allow it. But what
broke my heart even more was seeing the condition that their bodies were in.
They were so skinny, too skinny, skin and bones. They ate one meal a day,
sometimes not even. When I hugged them, I could feel their ribcages poking my
stomach. Grandma hadn’t changed her clothes for two weeks and her pants were
soaked through with urine. The house was freezing, they didn’t have the heat on
or a fire in the wood stove and my guess was that it hadn’t been on in a while.
They weren’t healthy at all. And then this happened:
I
was sitting in their living room, and we were talking about life.
“Who are you?” Grandma asked, looking straight
in my eyes; her face was more serious than I ever remembered seeing. At that
moment, she really didn’t know who I was.
I
could handle everything else: the house can, and will, be cleaned; her clothes
can be washed and we can buy new ones to replace the ones that are ruined; we
can buy them enough groceries so that they’ll eat—this was why we were here.
But this can’t be fixed. There is no cure for Alzheimer’s disease. Sure, there
are drugs that can slow the progress down, but so far Papa wouldn’t let Grandma
take any. And would it really be worth it? What would you do if your Grandma
didn’t know who you are?
It
was early December 2012, Doug and Sally fell asleep in bed talking about
Thanksgiving at Lisbeth’s the week before. Doug was trying to remind Sally of
everyone who was there. Though, this proved to be more difficult than he
thought because he couldn’t exactly remember who was and wasn’t there, either.
Sally
fell asleep quickly, on the inside of the bed, her side. She meant to only roll
over onto her other side, but the roll went farther and she fell between the
bed and the wall. She was stuck and then she suddenly remembered that she was
claustrophobic. Sally screamed.
Doug
woke with a jump. He scrambled to get up and tried to save Sally, but couldn’t
reach her from the bed. Doug pulled the top mattress off and propped it against
the doorframe. He thought that if he crossed the box springs lightly enough he
could reach her. But it didn’t work like that and he got stuck too.
Lisbeth
tried calling them several times but no one answered the phone. Worried that
something happened to them, she made the hour drive to their house. She had to
use her key to get in and then heard Doug’s yells come from upstairs.
Doug
was stuck in the box springs – with no pants on. Sally was still stuck next to
the wall in her nightgown. After helping get both Doug and Sally free, Lisbeth
called 911; when the paramedics got to the house, they said that Sally had a
heart attack. The doctors at the hospital thought she also had broken her hip.
Loie
came up the next day from North Carolina and when she and Lisbeth arrived at
the house from the hospital, Doug was slumped over on the floor and couldn’t
respond to their questions. 911 was called again.
After
years of trying to convince Doug that he needed help, it took him almost losing
his wife for him to finally realize he couldn’t do it alone. Hell, he couldn’t
even tell the paramedics how long they were stuck like that for. Sometimes you
need help, even if you don’t want it.
So
he agreed that Sally would go down to Loie’s nursing home for rehab, and he
would follow them after he was released from the hospital.
Sally
weighed 115 lbs. and Doug weighed 210 lbs.
It
was January 2013; I was in North Carolina, home on Christmas break.
Sitting
in Grandma’s room at the nursing home, we were looking at old photo albums. Papa
looked at Mom, “Where’s Mark?”
The
room fell silent; I felt like I was transplanted in a scene from someone else’s
life. I glanced at Mom, tears ran down her face. She gulped air, her lips
trembled.
“Well,
Dad. Mark was killed, remember?”
Tears
started to run down his face.
“Oh.”
He looked at me, ashamed of not remembering this about his own son. “Yeah, I
remember that. I just don’t remember how he died.” He lied.
“Uh,
it was in a car accident.” That was all Mom was able to say. She couldn’t say
that it was the night before he was going off to fight in war. She couldn’t say
that he was drunk when it happened and he thought it would be fun to play
chicken with his car. She couldn’t say he died instantly, while his best friend
lived.
“Yeah,
that’s right. I remember that.” Grandma agreed with Mom’s story. Whether she
actually remembered this or not was a different story.
We
all were shaken up by this, it was completely unexpected. We were used to
Grandma, but not ready for Papa to be like this already. He would never admit
it out loud, but it killed him on the inside that he didn’t remember Mark was
killed, even if it was just for that moment.
Twenty
minutes later, Mom was getting Grandma and Papa milk. A nurse came into the
room to check on them. Papa showed her a black and white picture of a young
Grandma. She was in her nurses uniform, sitting on a stool with her back
straight, her head tilted toward the camera a tad with her eyes looking over
her shoulder at the person behind the camera. Her hair held tightly in a bun
hiding underneath the cap. Her skin was flawless. Her smile spread warmth of
joy and happiness to her cheeks and eyes. It’s the same smile that she smiles
today; the same smile that brightens the room.
“This
was my wife, Sally. This was her.”
“Who?
Me? We’re married?” Grandma forgot her own husband.
Walking
Papa back to his room, he said this:
“Seeing
her like this breaks my heart. Every day I pray to God that I could just get my
wife back. I just want her back. She’s not there anymore.”
“She’s
still in there, Papa. Somewhere Grandma is still there. You remember what
happened with Grandma Aunt Claire? Remember how we just had to be there for
her, no matter who she thought we were or she was? Well, we have to do the same
thing for Grandma. She needs you right now more than ever. You can’t give up on
her, you have to love her. We need to love her. For better or for worse.”
“It’s
just not fair. Why me? Why her? Why?” He begged for answers that I couldn’t
give.
“I
know it’s not fair that you have to go through this again. But there’s nothing
you can do about it. You love Grandma, you always have, continue that love, she
needs it.”
“Yeah.
You’re right.” Papa said with a shaky voice.
We
hugged and I felt a tear drop on my shoulder. I thought: when I go back to
school, who knows what will happen. What if she doesn’t know me, even after we
tell her who I am and what my name is? I reminded myself that I just have to be
there for her, as best as I can.
It
is September 19, 2013.
Doug
and Sally are in North Carolina – today they celebrate their Sixtieth Wedding
Anniversary. They don’t know it yet, but all of their children, and some
grandchildren will be driving down to help them celebrate this weekend. Loie,
their oldest daughter, and my mother, didn’t tell Doug mostly because she
wanted it to be a surprise for them, but also because she knew she’d have to
remind him several times before Saturday. Sally will need to be reminded who
each person is, a couple times, and why they are there. After they remind her
of their name and relation to her, she will act like she remembers them
perfectly well; however, she will be secretly embarrassed that she didn’t
remember this. For Sally and Doug it will be a great celebration, a rare and
happy time when all of their children will be together – this usually only
happens on Thanksgiving each year. For the children: Doug, Loie, Paul and
Lisbeth it will be a bittersweet celebration. They will be happy to all be
together and celebrating a milestone event for their parents, but they also
will be thinking that it is probably going to be the last anniversary that
their parents spend together alive.
I
am Idaho, now in my final year of graduate school. Tonight I am walking in the
Walk to End Alzheimer’s event. At the registration table, I can only sign in –
I was not able to donate the hundred dollars to get an “End Alzheimer’s” shirt
because the money that would have gone there had to go to help my mother take
care of my grandparents.
I
walk up to the “Flower booth” where they have fake windmill flowers, each color
represents something different. The blue signals that you have been diagnosed
with Alzheimer’s disease or a form of dementia. The yellow signals to others
that you are a caretaker or supporter of someone with AD or dementia. The
purple signals that you have lost a loved one to AD or dementia. The orange
signals that you support the cause to End Alzheimer’s Disease and wish to see a
world without it.
After
explaining the different colors to me, the gentleman at the booth asks me what
color am I there for.
I
chuckle a little, and tell Mick that I am just about every color except for the
blue and that might very well be in my future.
He
smiles back at me and nods. I tell him of our family’s history with
Alzheimer’s: how my mom has been an administrator at Nursing homes for as long
as I can remember and has been dedicated to this disease even before my
grandparents were diagnosed; how I have lost a Great Aunt to AD and now both of
my grandparents have it – also how this is a bittersweet day and coincidence
that I am walking for them on their Sixtieth Anniversary and show him the
picture of them that I have brought along with me. Mick smiles again in
understanding.
I
choose a Yellow flower to signal the current fight and today’s reason for
walking - for my grandparents and we begin to walk the Palouse hills, a sea of
Purple (the color representing AD) spreads from Pullman, Washington to Moscow,
Idaho. My mind drifts back to North Carolina and I wonder if my Grandfather
even remembers that today is his anniversary. Then I try to imagine what it
might be like on the day that I will walk with a blue flower; I have to look
away from the woman I am walking next to so that she doesn’t see the tears that
start to roll down my face.
Why
does my Grandfather need to tell me these stories over and over again? Is it
because he forgets that he tells them to me or is it something more? Does he
tell these stories to try to regain what has been lost? Maybe him telling these
stories is re-affirmation of his own identity. Maybe he thinks that if he
doesn’t keep telling these then they will be lost, and after he is gone, he
will be lost with them. Maybe the fear of mortality drives him to write his own
story in our heads, minds, and hearts. Maybe he tells himself, and us, stories
in order to survive.
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