April 16, 2012 · 6:17 am

Dementia and the ER don’t mix

I started a new job this past week and one of my managers had a terrible bicycle accident after work, and suffered serious facial injuries. He’s going to be okay, thanks to some fine work at the local trauma center hospital. However, he’s also diabetic, and despite telling the staff multiple times, they didn’t even bother checking his blood sugar until the second day he was in the hospital. Luckily, his wife, a registered nurse, arrived at the hospital and was present to be his medical advocate.

This incident made me think about my dad’s final ER visits. He had a bit of a revolving-door relationship with the local hospital during the final two months of his life. When Dad came back to Ruidoso to move to a local assisted living facility that finally had an opening, he was quite ill with what was most likely pneumonia. When the nurse did the intake process at the local care facility, I was told the red flag went off in their computer system when they entered the drugs that Dad had been prescribed by the other facility. I took a look at all of the medications he was on, and Risperidone was on the list. This is not FDA approved for use in elderly patients with dementia and essentially is used by care centers to “gork” out the residents so they are less trouble. Studies suggest the drug may have contributed to an increased risk of stroke in elderly patients.

When Dad was taken to the ER because he was so ill, he was also very lethargic. I asked the medical staff there about the Risperidone, and perhaps they could start weaning him off that, since it is known to make people groggy and clearly Dad was not a “problem” patient at the moment, due to his medical issues.

The doctor just shrugged his shoulders and said their policy was just to keep them on whatever drugs they are currently prescribed. While this might make sense in most cases, wonder if the assisted living facility had been giving him a combination of drugs that was making him ill? Shouldn’t the hospital take that into consideration, instead of blindly feeding my dad pills just because they were on a list?

I’m not usually a fan of being a bitch, but when it comes to hospital care, often, the nice and meek finish last. You have to speak up for yourself and the loved ones you are caring for, even if the staff roll their eyes and get frustrated with you. When someone’s life and well-being are at stake, you have to fight back against an often indifferent healthcare system.

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April 15, 2012 · 11:36 am

My dad’s hometown in a ‘Titanic’ spotlight today

As the centennial anniversary of the sinking of the Titanic is marked around the world, much attention is being placed on Belfast, Northern Ireland, where the doomed ship was built. I wish Dad could have lived long enough (in his right mind) to see this day because I know he would have been glued to the TV set, watching all of the news coverage of this historic event. As I’ve written before, Dad had a lifelong fascination with the Titanic, due to its larger-than-life presence in his hometown.

The Titanic leaves Southampton, England on her maiden voyage to New York City, April 10, 1912. File photo.

Belfast as a city has struggled with the Titanic legacy. It must be difficult from a moral and ethical standpoint to balance a local pride in a feat of shipbuilding along with the tragic sinking and enormous loss of life that occurred on the ship’s maiden voyage. Una Reilly, chair of the Belfast Titanic Society spoke eloquently on this point: “We are all proud of this ship. What happened was a disaster; she was not.”

There’s an analogy that came to mind as I’ve been reading various Titanic-related articles. One such piece debated the reason why the Titanic sank, and proposed that if the captain had just struck the iceberg head-on, the ship could have handled it, but it was his decision to try to skirt around the iceberg that caused the ship to suffer damage that led to its sinking. Whether this theory is right or wrong we may never know for certain. But there is a life lesson to be learned here. When it comes to life’s troubles, it we meet them head-on and deal with them directly instead of trying to skirt around the issue and be in denial, we have a better chance of overcoming such obstacles.

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April 14, 2012 · 11:02 am

Uncle Marty

Uncle Marty was not really my uncle. He was a family friend, someone that my mom used to work with when she was a proofreader. He died when I was still fairly young. I remember him as a big, friendly man with a jiggling gut. He would sometimes come visit us, but often we would go visit him at his home. It was a bit of a drive, and I’m sure it did Mom good to get away from babyland for awhile. There are some audio recordings that have survived of one of our visits there. It’s interesting to hear a casual conversation from back then with mentions of new movies at the time, circa 1975-76. (There’s also sounds of a baby starting to get fussy on the tapes, gee, I wonder who that could be.)

Dad and Uncle Marty hit it off well. In just about every photo I have at Uncle Marty’s, a nice tall glass of beer can be seen, so I think that’s one of the ways they bonded. We also had the chance to enjoy the backyard on our visits, and the photo of the three of us was taken in Uncle Marty’s backyard on one such visit. We always lived in apartments and had to go to the park for some green space. (Just skip the picnic if Dad was along.)

Uncle Marty holds a special place in my memory because my parents didn’t have a lot of family friends, and their relatives were thousands of miles away. I’m sure they both missed their families, but especially Dad, who was separated by an ocean from his siblings and mainly kept in touch via letters. I’m sure Dad enjoyed having a chance to relax, sip a beer and shoot the breeze with good-natured Marty.

All of the visits I can remember with Uncle Marty were happy times, simple memories that mean more as the days get darker.

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April 13, 2012 · 6:31 am

Panic at the picnic

Dad was not the outdoors type, so there were no camping trips during my childhood. My mom, having been raised on a farm, had fond memories of family picnics in the Great Smoky Mountains National Park. “Even in the summer, you would need a sweater,” my mom would relate excitedly while rattling off the variety of dishes they brought along. It sounded like a great time.

So mom insisted the three of us go on picnics. We didn’t have anything as spectacular as the Smoky Mountains in our neighborhood, so a local park would have to suffice. The food spread wasn’t quite as delectable as what Mom had as a kid, but I think it included chicken and potato salad and some kind of dessert.

The trouble started with the uninvited guests. The flies. Dad was not fond of bugs of any kind, and would swat at the flies with erratic sweeping gestures that made him look like he was overacting in a 1950’s sci-fi B-movie. I’m sure they had flies in Ireland (aren’t they kind of like roaches, you can find them almost anywhere?) but a warm spring or summer day in Southern California brought forth the flies, the bees and the ants. It was too much for my Dad to handle.

He ate hurriedly, trying to avoid another encounter with a fly. While I liked certain bugs (the roly-poly or bus bug was a favorite of mine) I also was annoyed by flies and terrified of bees or any creature that could sting or bite. So I would mimic Dad’s behavior, which would annoy my mom, who just wanted to enjoy a nice meal outdoors with her family. A simple request, right? Not for our family.

To this day, if a fly gets into the house, I must hunt it down and destroy it because the buzzing and flying around drives me crazy. Hopefully, Dad was not reincarnated as a fly!

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April 12, 2012 · 6:07 am

My 100th memory of Dad

I can’t believe I’ve already reached the 100th post milestone but today is the day! This project is truly a labor of love, and I’ve met (virtually, anyways) so many great people in the blogosphere, many who are caring for a loved one with Alzheimer’s. My deepest thanks to all of the advocates out there and my deepest admiration for all of the tireless caregivers around the world.

An image has been on my mind this week, and it is of my dad’s hands in the last years of his life. They were bony, with veins poking out just beneath the thinly stretched skin. There were age spots mottling the flesh and his fingers were cool and clammy to the touch. I doubt that I had held my dad’s hands, or even taken notice of them, since I was a little girl who needed help crossing the street.

Dad holding on to my hand, trying to hold on to his sanity.

When dementia began to creep into our family, there’s a photo of us on the couch at my parent’s house, and my dad is gripping my hand so tightly, as if he’s afraid of letting go in more than just a physical sense.

In that final year of my dad’s life that was spent in the nursing home, my dad couldn’t say much, so holding his hand was one of the only ways I could still connect to him. I remember watching his hands, twitching with a bit of a tremor, lift a cup of hot coffee to his lips and sip tentatively. Then he reached out the cup to me.

“Do you want some,” he asked, with a polite innocence that was heartbreaking.

Of course, being me, my mind raced with the thoughts of germs and how I would be able to get out of this awkward moment. I thanked him and held on to the cup, until he was ready for his next sip. It took him so much effort to do something he once received great enjoyment out of. Alzheimer’s strikes again.

There’s a tenderness that many caregivers offer those with Alzheimer’s and it can greatly improve quality of life. I just wish that I had shown a little more tenderness while my dad was still aware enough to appreciate it.

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April 11, 2012 · 6:22 am

Blaming Dad for my crooked teeth

Recently, I came across the dreaded school photos of myself. The photos below are from ages six, eight, nine and ten. (Not sure what happened to my second grade photo.) In them, my poor teeth, crooked and with big gaps, are clearly on display. I wasn’t really self-conscious about my teeth until some little bully in my fifth grade math class started calling me, “Bucky.” I remember my face glowing a crimson red and fighting back the tears that threatened to overflow.

When you are a little kid, it’s easy to redirect your anger. (Well, some people never grow out of that phase.) One only had to take a glance at a photo of Dad and I to see that we had been blessed (cursed?) with the same kind of teeth. It’s the reason Dad looks like he’s at a funeral for many of our family photos. Back when he was young, cosmetic dentistry was essentially non-existant. His family was too busy just trying to survive World War II in Belfast. So poor dental care, combined with poor genetics and a lifelong cigarette and coffee habit meant my dad’s teeth were not going to win any beauty contests.

I didn’t have to endure being called “Bucky” for long. I was fitted for braces that same year and wore them throughout middle school. While some kids got picked on for wearing braces (“metal face,” etc.) I don’t remember having to deal with that. It was pretty common in my class to have braces.

Over time (and the fact that I stopped wearing my retainer before it was advisable) my front teeth have moved forward a bit. Sometimes when I smile for photos, my front teeth get “stuck” over my lips slightly. It makes me cringe a bit, but in the grander scheme of things, I know it’s not a big deal. And it reminds me of Dad, which is important.

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April 10, 2012 · 7:00 am

Happy birthday Dad

My dad would have turned 80 years old today. It would have been nice if he could have reached that milestone, but not with Alzheimer’s.

He spent his last birthday at the assisted living facility. The staff bought him a McDonald’s meal as a birthday treat. My mom had visited him shortly before his birthday and I called from Atlanta. I have never felt so dishonest as when I mustered up whatever cheeriness I could find in my voice to wish him a happy birthday.

I knew there was no way that it would be a happy day for him. By his 79th birthday, Dad’s dementia, along with the increased medication being fed to him at the care center, had left him an emotionless shell. He wasn’t necessarily sad or angry; he just didn’t seem to be feeling anything at all.

But I always felt that there was this lingering despair that my dad somehow was clinging to, that somewhere deep below the fog of Alzheimer’s, he was aware of his condition and how hopeless his future was.

I hope I was wrong.

Even when he was well, Dad never made a fuss about his birthday. A card, a small gift like cologne and dinner was about all he wanted. I think birthdays in his mind put him closer to death, which he always feared, so he approached the day with trepidation, instead of a spirit of celebration.

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April 9, 2012 · 7:00 am

Dad worked many holidays

I was talking to my mom on Easter Sunday and she reminded me how many holidays Dad worked as I got older. When he became a security guard, he worked weekends and countless holidays, as property always needs to be protected regardless of whatever day it is on the calendar. My dad never complained about this, it was just what he had to do to support his family. Maybe he would have preferred a 9-5, Monday-Friday gig, but he was never the type to hold down a stuffy office job. He preferred working outdoors (and the automatic smoking breaks!)

Once my Dad retired and my parents moved to New Mexico, they would usually go out to eat on a holiday, nothing fancy, usually Denny’s (senior citizen discount) or Pizza Hut (where they would always order pasta, never pizza.) Still, these mundane outings gave my parents great pleasure. Now Mom, all alone for the holiday, ordered delivery from Pizza Hut. She was going to set at the dining room table and burn a candle in memory of Dad.

Old habits die hard and holidays always make one think of loved ones now gone.

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April 8, 2012 · 11:41 am

Memories of Easter

As a kid, I enjoyed Easter quite a bit. Mom and I would make an Easter basket together, filling the pastel-colored plastic eggs with jelly beans and chocolate eggs wrapped in foil. We would also color eggs with various dye and decoration kits.

Dad would usually go to church. Mom and I didn’t usually attend church service with him, but I do remember as a small child carefully holding a palm leaf in the back seat of the car, cradling it as if it was a rare piece of china that might shatter at any moment, so I did attend Palm Sunday service with Dad at some point. I also remember asking one year why Dad had ashes on his forehead and being given a simplified definition of Ash Wednesday.

Dad usually avoided eating eggs, fearing their high levels of cholesterol. (I always found this ironic, since he was a lifelong smoker.) But Mom could usually coax Dad into having one of the brightly dyed boiled eggs for Easter Sunday breakfast. I would place the eggs in the little cardboard holders, labeled “Mom” and “Dad.” I usually picked out a green-colored egg for Dad, since he was Irish. We usually had something sweet with the eggs, like cinnamon rolls or blueberry muffins.

Easter memories for me are warm and bright, just like the spring season.

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April 7, 2012 · 12:14 pm

What Dad didn’t die from

I always thought Dad would die from some form of cancer. If I had put a morbid bet on it, I would have picked lung cancer. My dad had smoked since he was 16, a two-pack a day habit for good deal of his adult years, then he slowly tapered off as he got older. He only stopped smoking when he was admitted to the hospital for his gallstone surgery, where they placed a nicotine patch on him. He never returned home after that, and continued to wear the nicotine patch at the care center. As far as I know, he never smoked another cigarette, though he continued to ask for them until he passed away. Despite the growing memory loss, he never forgot how he loved to smoke.

He also started having issues with his prostate, like many older men. However, Dad, like many men, hated going to the doctor, despite pleas to have tests done to rule out prostate cancer. With vague complaints of abdominal pain and growing issues with urination, I feared the worst. I even made special pleas directly to Dad, but he refused to go to the doctor.

There were of course concerns about the condition he actually had been diagnosed with, which was COPD (emphysema). This disease is what earned the top spot on Dad’s death certificate.

There’s quite a few studies that suggest smoking is a risk factor for Alzheimer’s disease, so Dad’s lifelong vice probably did contribute to the crumbling of his mind. It was sadly ironic that his body, despite the abuse, kept going for as long as it did, despite the destruction that was taking place in his brain. If Dad had not had Alzheimer’s would he have ended up being one of those people carrying oxygen with them everywhere?

Perhaps. Dying is not about being pretty, whether a person suffers from a mental or physical condition. Even if I could go back in time and change things, I would not wish for Dad to have a clear mind but suffer from a physical condition long-term. One just has to learn to accept dying and death as it comes to us.

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