December 19, 2012 · 7:21 pm

Howls of Alzheimer’s

It was a brutal, ugly weather day where my mom lives. The wind howled like a banshee all through the night and into the day. The wind was sustained at 40 mph, and geared up to 60 mph gusts at times. It left me feeling unsettled and on edge all day long. I set in the living room and in the chair that Dad spent most of his time in when he still lived at home. I watched the thin trees take a beating. They bent, but did not break with the vicious wind gusts. It was a miracle of nature to me.

At one point, blowing snow whipped its way through the sky.

Even though I avoided going out in the windy weather, I felt like the wind symbolized the battering my family has taken over the last year. And the howling made me think back to my Dad’s nightmares, and the sounds I would hear at the nursing home Dad spent the last year of his life in.

Perhaps we were lucky that Dad mainly became mute as his Alzheimer’s progressed, and there were no verbal tirades or helpless cries that some families have to endure.

Those howls and moans of souls trapped by the cruel disease of Alzheimer’s. It is a sound one can never forget.

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December 18, 2012 · 7:18 pm

Fleeting moments of connection

I read a moving blog post today about someone with Alzheimer’s who pleasantly surprised their family caregiver with a rare moment of lucidity. They were able to express their love verbally before Alzheimer’s moved back in and took the light out of their eyes, returning them to a glassy, blank stare.

For most of us, these lucid moments are few and far between.

This made me think about the last lucid interactions I had with my father. He was at the point where he was barely able to verbally communicate. He would sometimes be able to utter a few words that made sense, but most of the time, he carried that sad, faraway look in his eyes. But I remember that moment so clearly in the hospital room, when Dad’s eyes lit up with recognition while I was holding his hand.

“Oh, there you are,” he said, as if startled by this temporary retreat into reality.

“At first I couldn’t see you but now I can,” Dad said with a wan smile.

I knew that was the moment to say what was burning in my heart. “I love you Dad,” I said, slowly, clearly.

“I know you do,” Dad said. Then he began to drift away from me, back into the isolating world of Alzheimer’s.

But it is the moment of love that I remember the most.

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December 17, 2012 · 8:08 pm

Big warm hands

Mom is recovering in an amazing fashion from her major surgery on Friday. She’s still in the hospital, but may be released back home as soon as tomorrow!

Today Dad was weighing heavily on her mind. She began to weep as she talked about how she still missed him, the way he was before Alzheimer’s took hold of him

hands

She mentioned that one of the first things that she remembered about Dad was his big, warm hands. She remembered when they were courting and holding his big, strong, warm hand and feeling comforted.

She remembers dating other guys when she was younger who had cold, rough hands and that was such a turn-off to her. But Dad was a winner because not only were his hands big and warm, but they were soft, despite decades spent as a manual laborer.

It’s interesting what we remember most of the people we love. It’s not always what one would expect, but it is sweet just the same.

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December 16, 2012 · 7:20 pm

Connection between loneliness and Alzheimer’s?

I read an interesting study today that suggested there may be a connection between loneliness and Alzheimer’s. What was most interesting was that it was those who felt lonely versus those who lived alone but didn’t express feelings of loneliness that had a higher incidence of Alzheimer’s.

It was a surprising result to the researchers. I’ve read numerous studies about social isolation leading to everything from dementia to depression. I wonder if these studies have some inbuilt bias towards extroverted people. There are some people who need constant company or they feel lonely; others can interact socially with people once or twice a week and be perfectly happy.

I’m not sure if Dad felt lonely before Alzheimer’s set in. Dad certainly had a passion for “alone time” activities like reading. He also had a solitary job as a security guard for many years. So like me, he was comfortable being alone and entertaining himself. Did he yearn for more socializing? That I will never know.

But what is clear to me is that once Alzheimer’s took hold of my father, he was whisked away into an isolating world, where we really could no longer connect with him in a meaningful way. And I saw that same isolation play out on the faces of every patient in the dementia ward of the residential facility where my dad spent the last year of his life. I remember so many residents reaching out, touching my arm, trying to communicate with me, hoping to make some kind of human connection. I often felt like I let them down when they shuffled away after an awkward, confusing exchange.

I hope there are more studies investigating social isolation and dementia, and I hope they take into account that both introverts and extroverts exist, and that the definition of loneliness is different for every human being.

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December 15, 2012 · 8:33 pm

The caregiver’s curse

Mom is recovering in an amazing fashion from her major surgery that was just performed yesterday. The surgeon came to check on her today and sketch out a plan for the next few days.

Mom took the opportunity to tell the doctor about how she had cared for Dad at home for 2-3 years until his dementia became too much for her to handle at home. She had been healthy for 74 years, and then all hell broke loose.

The surgeon nodded sympathetically. “I have heard so many stories just like yours. There’s a certain level of adrenaline that kicks in to handle crisis situations, and surprisingly, that level can stay quite high for long periods of time. Then once the loved one dies, the caregiver completely loses that adrenaline boost, and that’s when sickness can kick in.”

It seems particularly cruel that the reward for doing something so selfless and loving as caring for a loved one with a disease can end up causing you to get sick, but that is reality.

Even doctors are admitting that caregiving can be hazardous to your health, but what real alternatives are there? Residential facilities are extremely expensive in the U.S. and out of the financial reach of many families.

I’m an only child. My father passed away a year ago. My mother is now sick. I quit my job to take care of her. Sure, I could put her in a facility and her life savings would be gone in a few months. Home nursing options are limited to a couple of visits per week in the small, rural town Mom lives in. I live in a big, expensive city. There are no easy options here.

We must do better for our elderly, and their families. We need more support, emotionally, physically and yes, financially.

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December 14, 2012 · 8:22 pm

A storm of emotions

Today was Mom’s surgery day. We had to be at the hospital before sunrise, and the air outside was swirling eerily, a rush of warm wetness with an undercurrent of bitter cold wind. A winter storm warning was in effect, but no one knew quite what Mother Nature would bring.

It was a relief just to get Mom to the hospital. Then she was taken and I was left to sit and stare at the clock in the waiting room, and try to occupy my rushing thoughts like I had done so many times before with Dad. It began to rain, with the skies dark and bruised with clouds.

hospital

Almost two hours dragged by before I receive word Mom was out of surgery. The doctor rushes out and lets me know Mom did great and everything went as planned.

The rain began to pound harder, and the wind picked up with it. Ice pellets start to pop off the ground in the hospital’s garden.

I am led back to see Mom in ICU. She is calm and peaceful, just like Dad had been when he was sedated last year while on a ventilator. There is a serenity that could almost pass for death, but the machines and Mom’s rising chest prove she is quite alive. She opens her eyes and recognizes me. With Mom, I expect this more, but I remember being caught off guard when Dad seemed to recognize me a little over a month before he died.

CNN was just beginning to report the Connecticut school shootings while I was stroking Mom’s forehead in ICU.

I walk back out to the hospital lobby to let Mom rest. People are gathered around the huge windows, staring out into a winter apocalypse. The driving rain has turned into a wet snow, which is being blown sideways by the 40 mph + winds.

The weather reminds me of the winter storm we slogged through last year to see Dad’s body at the mortuary. We barely made it back home before the roads became impassible.

And the same thing happened today. I hated to leave Mom but the nurses said she was doing quite well and I didn’t want to get stranded at the hospital overnight. There were a couple of scary slides and heart-pounding moments on the way back to Mom’s place, but I was finally able to close the door on this emotionally draining day.

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December 13, 2012 · 8:09 pm

Mom’s new dream of Dad

Mom is having her second major surgery of the year tomorrow. Of course, she’s having a great deal of anxiety about it. Major surgery carries plenty of risk factors that can lead to death, and as you get older and have other complications (like Mom’s blood clots) that potential brush with death seems even more real.

This morning, Mom wanted me to wake her up so we could go for some pre-surgery blood tests. I stopped in the bathroom first, letting her get a few more minutes of sleep. Suddenly, through the door, I heard a plaintive plea:

“Pat! Pat! Pat!”

Pat was my Dad’s name.

I rushed out of the bathroom and Mom realized that she was having a dream and it was actually her daughter in front of her. She said she was having a dream about Dad, and had mistakenly called out his name instead of mine.

Perhaps Dad is sending supportive and loving energy from wherever he is now. I know he wouldn’t want Mom to suffer, and would do whatever was in his power to make her better.

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December 12, 2012 · 7:29 pm

The secret lives of hospital staff members

When a loved one is in the hospital, you come into contact with a whole array of professionals that you might not meet otherwise. During Dad’s November 2011 hospital stay in Albuquerque, we met a fascinating respiratory therapist.

While he was twirling dials and recording data off of Dad’s ventilator machine that he was in charge of managing, the respiratory therapist told us about the novels he had written. One was about a serial killer, and I can’t remember what the other one was about, but it had a complicated plot line. He said the two books had TV rights picked up by HBO. There was no particular reason to lie about it, so I guess he was telling the truth. With all of the events that have transpired this year, I haven’t had time to follow up on his projects to see if they ever saw the light of day.

But beyond discussing his writing, he was just a fascinating man in general. He could fly helicopters and would help in search-and-rescue operations. He was an intriguing mix of risk and responsibility.

Since I would love nothing more than be a successful writer, I had to ask why he was still working at a hospital. He simply replied that he loved the work. I was glad to know that someone so dedicated to his work was personally taking care of my dad’s breathing needs while he was under sedation.

Recently I thought about this interesting man again, and wondered if he’s still working at the hospital or if his writing career has really taken off. As a writer, I hope for the latter, but for the patients’ sake, I hope for the former.

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December 11, 2012 · 7:07 pm

Cheap cologne sets a reminder of Christmas

I had the misfortune of finding myself shopping in Walmart today. Mom wanted to stock up on some things prior to surgery, so she wouldn’t have to worry about it when she is released from the hospital after her surgery.

Any kind of giant store like Walmart makes my vertigo go crazy. The entire store is sensory overload, and then there’s the constant dodging of other customer’s carts. Mom went to get her hair done so I was left alone to shop. (And if you’ve ever shopped with an elderly woman, you know it’s preferable to shop alone!)

cologne

As I sped through the Christmas gift section, to get from the pharmacy department to the grocery side of the store, my gaze picked up a gift box of men’s cologne. It immediately gave me a pang in my heart. Every year, I would buy Dad one of those box sets of cologne. I would usually get Stetson or Grey Flannel. It was an easy to select gift that I honestly never put any thought into. Dad wasn’t into presents, so he never asked for anything specifically. I didn’t want him to feel left out so I tried to get him almost as many gifts as I would get my mom, who would gush over every little cheap trinket I would get for her.

Dad always seemed to appreciate the cologne, even if all he did was mumble a thanks when he opened it. He definitely used it every day, and the scent of men’s cologne will always remind me of my father.

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December 10, 2012 · 7:44 pm

First snow brings sad memories

Last night, the first snow fell at Mom’s house. I’m staying with her until she has her colostomy reversal surgery this Friday. In 10 days, it will be the first anniversary of my father’s death.

snow-edit

The snow is beautiful, but also is a silent and stark reminder of the sad events that have plagued my family over this past year. I wrote about this more on Cowbird.

Over time, I’m sure I will be able to enjoy the beauty and pleasure snow can offer, but right now, it’s just a reminder of difficult times.

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