Tag Archives: dementia

February 4, 2012 · 9:59 am

Dad’s inability to swallow, the final insult

I think most people probably associate Alzheimer’s with memory loss and other manifestations of mental decline. And while certainly those would be the hallmark symptoms, the physical impact of this disease cannot be forgotten.

Despite being a lifelong smoker, dad was in pretty good physical health when his mental state began to decline. Sure, he had been diagnosed with COPD and emphysema, and he was having some mild prostate issues, but he had always been a lean man who enjoyed walking as a form of exercise. Frankly, I always expected lung cancer would be what claimed my dad’s life. But it was a cardiac arrest, along with pneumonia and dementia that secured that spot on the death certificate.

Dad had been put on medication for a bladder infection and that’s supposedly what knocked him out when he was transported to the new nursing home. We will probably never know what truly happened. What was quickly determined at the hospital where he ended up was that he was having difficulty swallowing. The palliative doctor explained to us that the act of swallowing actually consists of many complex processes that the brain must execute, even though to us, it seems automatic. As anyone who has dealt with Alzheimer’s and dementia knows, difficulty swallowing can lead to aspiration pneumonia.

Before the hospital was able to conduct the swallow test, the dietary staff would still bring dad full meals, which just set there on the tray, growing cold and congealed. Turkey medallions and mashed potatoes and carrots. All things dad would have loved if he had been more lucid and able to eat properly. Instead, he was given water mixed with honey, and he struggled to suck up the sugary dredge in the straw.

I actually watched one of the swallow tests performed on dad. There was a cup of water, a cup of juice, and a small container of applesauce. Dad struggled physically to swallow, but also most importantly for rehabilitation purposes, failed to follow directions. That’s the irony for those with dementia. Some of their physical symptoms might be alleviated via rehab, but they make poor rehab candidates because they can no longer follow simple commands.

Once the ability to swallow is lost, then the discussion of the feeding tube comes. Dad had one for a short amount of time, but we then opted for the palliative approach, which was focused on hand feeding. Yes, this increases the risks of aspiration pneumonia, but if it can give the patient a moment of faint, if fleeting pleasure, then so be it in my opinion. I’m not sure if dad enjoyed the bits of scrambled eggs and other soft foods that a stranger fed to him over the last weeks of his life, but a tube would have just been prolonging the inevitable, a cruel extension of a life that had already been stolen by this terrible disease.

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February 1, 2012 · 2:04 pm

Expecting the unexpected with dementia

While certainly my dad’s death did not come out of the blue, his sudden decline did catch my mom and I off guard. From most of the accounts I had read about Alzheimer’s, patients seemed to usually experience a slow, but steady decline. For my dad, his overall health took a nosedive over the course of just a few fateful days. He would never recover.

When you have a loved one suffering from dementia, you have to adjust your expectations greatly. While at the nursing home, my dad suffered from repeated falls and had to have a catheter placed because he was having difficult urinating, but he also had a great appetite and was fully ambulatory. He stayed in this fairly stable condition for several months, and mom and I adopted an uneasy new sense of “normal.”

The last photo of Dad and I together, July 2011.

There was finally an opening at an assisted living facility much closer to my parent’s home, so dad was to be transferred there on Nov. 1st. In mid-October, my mom went to see my dad and he bumped her as she was talking to one of the nurses. He was fairly alert and totally ambulatory. He had a doctor’s visit that day and did well there. My mom had lunch with my dad and he ate everything on his plate, and had some of mom’s food as well. She felt like it was one of the best visits she had with him in quite awhile.

On Oct. 26th, I had talked to the staff at the facility he had been at, to thank them for their care. I clearly remember the update the nurse gave me that day: Dad set off the alarm when he tried to leave the unit, but she was able to coax him to take a walk in the facility’s garden by giving him a lollipop. And he had a huge bowel movement that morning and they had to put him in the shower to clean him off. In the alternative world of Alzheimer’s, this is considered a good day. While the pessimist in me had doubts about the move, I held out a bit of hope that things would go well and mom would get to visit dad more, which would have meant so much to her.

But alas, it was not meant to be. On the day he was transferred, my mom and the director of the facility he was being moved to went to pick him up. He was asleep, more like knocked out, and had to be helped into the van. He supposedly had a bladder infection, and then was diagnosed with pneumonia. He spent the last two months of his life almost exclusively in the hospital. If there is one thing that this disease taught me, it’s to expect the unexpected around any corner.

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January 29, 2012 · 3:42 pm

Dad’s need to meditate

As I had dinner in an extremely loud restaurant last night and listened to the din of frenetic human activity around me, I thought about how my dad and I both enjoyed and required solitude. I’ve written before about our enjoyable visits to the library. We were both comfortable in our own worlds and spent a lot of time quietly reflecting. My mom tends to have quite the opposite nature, and could easily talk enough for all three of us!

Back when my dad was well, he would drop my mom off to grocery shop or run other errands, and when she reminded him she might be awhile, he would say, “That’s okay. I’m just going to sit here and meditate.”

As the dementia took greater hold over his mind, dad could no longer be trusted to be alone while my mom did her errands. But he hated going into stores and having to follow her around. This made a tedious but necessary chore an extremely stressful event for both mom and dad.

I wonder if all of those times he wandered away, he was trying to find his quiet place again, a place where he could be at peace and away from his troubled mind. I remember when I viewed his body at the funeral home, how calm and peaceful he seemed to be be. I told my mom he seemed “comfortable” and that was a state I had not seen him be in for many years. For those suffering with dementia, we can only hope that death does free them from the demons that plague their minds in this life.

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January 24, 2012 · 3:11 pm

Dad’s obsession with the $20

Well after my dad lost the ability to make change at the store or pay for a meal, he became obsessed with money. In particular, it was always $20 that someone owed him, usually my mom. She would play it off and say she was holding it for him. He became increasingly distrustful and paranoid. At one point, he started carrying around a huge wad of bills (mainly dollar bills) that would precariously jut out of his shirt pocket, ready to fall to the ground at any moment. He also would carry multiple wallets (he ended up losing most of the contents in those wallets over time.) My dad was never that organized but now he was a mess.

The altered relationship with money is a common manifestation of Alzheimer’s. I can only fathom dad was desperately trying to stay in control of something in his life, even if it was only reclaiming an imaginary $20 bill or carrying about a sweaty, crumpled wad of bills all the time. Even when he moved to the assisted living facility, he still talked about that $20.

On my last visit home while dad was still living there, he was fixated on collecting change. He would “count” it, or at least arrange it in various formations before putting it back in his pocket. I remember sitting in the guest room, listening to my dad’s mind unravel in the bedroom next door, the constant jingle-jangle that my mom tried to drown out with the radio as she cooked dinner. I wanted to go to dad, talk to him, take his troubled mind off the obsession with change. But I felt uncomfortable and awkward in the face of such odd behavior. So I left him alone, and the tense house continued to be filled with the maddening sounds of dimes and nickels and pennies and quarters colliding with one another. I regret not attempting to ease his distress, even if just for a moment.

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January 21, 2012 · 10:07 am

Dad doped up at the nursing home

I saw this article the other day about Johnson & Johnson paying out a $158M settlement over Risperdal. I took notice because unbeknownst to us, dad had been prescribed the generic version of this drug (Risperidone) at the assisted living facility he resided at for ten months. The drug is to be used in treating adolescents with schizophrenia and other mental illnesses. The FDA has not approved this drug for use in the elderly with dementia, but it is commonly used anyways, and is legal to do so. In these cases, studies have shown an increase in stroke risk and an overall increased risk of death. The list of common medications Risperidone can interact with is disturbing as well.

Dad and I at the assisted living facility, March 2011.

I’m sure nursing home staff would defend their use of such medications as a way to keep patients calm and safe, especially when aggression and violent outbursts can be a symptom of Alzheimer’s and related dementias. My mom never liked the fact that they could wander in and out of each other’s rooms, but what was the other option, lock them up like animals in a cage?

I clearly remember my first visit to the facility where my dad was living. It had a separate, secure wing that was just for dementia patients called the “memory care” unit. I’m not sure what I expected to see, I guess something closer to an asylum than a daycare. But what I saw was eerily comforting, a bunch of seniors just sitting around calmly, while workers scurried about, cleaning up bladder and bowel accidents and doling out the meds that no doubt kept these patients in some twilight state somewhere between being stoned and being in a coma. I’ll venture a guess that dad wasn’t the only one being given Risperidone on a regular basis.

When I first saw my father, I couldn’t help but think of a zombie. He was shuffling down the hallway, wearing a gray t-shirt which had a noticeable wet spot on it (later I learned it was from his constant drooling) and Scooby Doo pajama bottoms and canvas slip-on sneakers. At first, I could not believe it was Dad because Dad had never owned a pair of sneakers, and he certainly did not lounge around in boy’s pajamas festooned with cartoon characters in his former life as a normal person. But the bony frame, the steel-tinted shock of hair and the eyes, still emerald green but no longer gleaming, that mouth set in a tense slash of determination, those all belonged to my father. I walked slowly to him, wanting to run, afraid he would vanish into thin air, then chiding myself for wishing that he would, to be put out of this benign yet suffocating version of hell. Instead, I said, “Hi Dad,” as naturally as I could and as his eyes searched mine in some feeble attempt at recognition, I wrapped my arms carefully around his fragile and stiff frame, while whispering raggedly into his ear, “I love you.”

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January 19, 2012 · 12:32 pm

How family relationships come full circle

After a 2-week long hospital stay in November 2010, and with my dad rapidly declining due to his dementia, he was deemed by medical staff to be too fragile to come back home, so he was placed in an assisted living facility. The cost of those facilities is staggering, and many people find themselves being blindsided by all of the bills associated with such care, and how much Medicare does not cover. I know we were.

What was even more surprising was what that $4000 per month fee didn’t cover. We were charged for transit to and from doctor’s appointments. We were charged for hair cuts and manicures/pedicures. We had to pay for the adult diapers and Ensure drinks separately. At home, my dad had only needed to wear a diaper at night, because he was still ambulatory and could still attend to his own toileting needs (usually.) But once he was at the assisted living facility, he was in diapers full-time. It seemed more and more often, we would get that call from the facility, “Patrick is almost of out diapers.” At one point, I called and asked just how many they were going through a day. “Oh, at least a dozen or more.” I thought I was going to have to take a second job just to cover the costs.

At first my mom was trying to handle buying the diapers and taking them to the care center herself, but that was too much of a burden so I offered to research online and find the best deal, then have them shipped directly to the facility. It’s both humbling and depressing to spend many nights on the couch, surfing Amazon.com looking for great deals on diapers for your 78-year-old father. Briefs or pull-ups? I learn the pros and cons of the various brands: Depends, Attends, Abena, Molicare, TENA, etc. I spent hours reading the sometimes sad, sometimes humorous accounts of adults with incontinence problems and their personal reviews of these products.

My mom had another take on this task that I did for my dad. “When you were a baby and your father would come home from work late at night, and I would tell him you’d run out of Pampers, he would say, ‘Well, Joy has to have her diapers’ and would get right back in the car to pick some up. He never complained.”

When I went back home just after my father passed away, I was greeted in the spare bedroom by stacks and stacks of adult diapers that were left over from one of the orders I had placed. In a plastic grocery bag atop the tower of diapers were unused medications that had been prescribed to my dad. These things, a few clothes and one lone studio portrait of me as a chubby-cheeked two-year-old were all of the belongings my dad had with him at the end of his life. It’s a sobering thought for our materialism-driven society.

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January 17, 2012 · 10:53 am

Dad’s trouble with the shower

My mom possibly fractured some ribs getting out of the bath the other day. It’s so easy to slip and fall, especially when you are older. My mom is extra careful, because she’s still nursing a broken shoulder from a year ago. The doctor checked her out and she should heal with rehab, but I couldn’t help but think of the irony here. Our family seems to have trouble with baths and showers.

Dad’s last moments alive were spent in the shower. The assistants at the care center he was at were helping him get a shower when he slumped to the floor, most likely from a cardiac arrest. He passed away just minutes later.

Photo by Scott Adams, http://www.vulchinteractive.com/

I also think back on how dad began to lose his ability to groom himself, as the dementia took a tighter hold on him. My mom would have to assist him in the shower, which must have been terribly difficult considering their impossibly small bathroom. I remember my mom telling me how she instructed dad to put shampoo on his hands and then lather up his head. He did so dutifully, then turned to her with a mountain full of suds atop his head. “Now what,” he asked, like a lost child who had never completed this task before.

But there are happier memories I have of bath time. I remember my dad singing in the shower, usually a medley of Frank Sinatra and Bing Crosby tunes with some Irish favorites mixed in for good measure. I remember loving the bright color of soap he used, which sometimes was Irish Spring, sometimes Dial. I remember racing into the bathroom after my dad had showered and swirling around in the steamy mist and breathing in the clean soap scent.

I’m also going to be extra careful in the shower myself from now on in an attempt to avoid this unusual family curse.

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January 16, 2012 · 10:12 am

Remembering dad’s descent into dementia

For those that have watched a loved one’s memory falter as dementia engulfs them, it’s usually difficult to pick an exact moment when you realized that there was something wrong. While certain forms of dementia may manifest more suddenly, it seems that with many Alzheimer’s patients, it’s a gradual decline that can sometimes take years until it’s to the point where that person needs help.

For my dad, there was one incident in particular that stands out in my mind as being a huge warning flag. I call it the burrito incident.

My mom would send my dad out on errands, which included things like getting money orders and mailing out bills, picking up a few groceries at the convenience store and buying lottery tickets. Mom always wrote everything out in detail on a sticky note. This one time, as we saw signs of dementia become more apparent, everything went wrong.

He was still driving at the time, so he pulled into the convenience store parking lot. He picked up a couple of burritos for dinner as was on the note and picked out the lottery tickets that my mom wanted. Then he walked out without paying for anything. The clerk made a big scene and yelled for my dad to return and pay for everything. He thought he had and an argument ensued. At this point, dad was in denial that there was anything wrong with him so it must have been a humiliating experience, as he was always a very honest person.

My mom was called and the order was paid for properly. Dad came home with the burritos, not that either one of them was hungry anymore. And the lottery tickets? That night, dad couldn’t remember where he put them. The next day, he found the tickets … in the trunk of the car.

It’s small incidents like these that illustrate how dementia steadily chips away at the mind until you hardly recognize the person left behind.

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January 13, 2012 · 8:45 am

Remembering dad’s voice impressions

As a child, I can remember my dad keeping me entertained by doing spot-on impressions of Woody Woodpecker and Donald Duck. I remember having giggling fits over his quacking ability. It was these moments that made me close to my dad when I was a small girl, but at some point we drifted apart. For the life of me, I can’t remember around what point that began. I think it was gradual, perhaps a girl bonding more with her mother as she approaches adolescence. At least I can still remember these warm moments with my father from my childhood before my dad drifted away in another sense as Alzheimer’s consumed his mind.

As his dementia progressed, there was one more impression he did that sticks in my mind in a bittersweet way. He was at the point where he could still communicate, if not always coherently. But he was trying desperately to hold on to his sense of humor, that core of his personality that made him human. So he mentioned something about Johnny Carson, and how much he had loved him. (That part was true. He always worked the swing shift and would get home in time to enjoy a late dinner, a beer and some late-night television.) He then began doing an impression of Ed McMahon’s famous introduction: “Heeere’s Johnny!” As repetition is common with Alzheimer’s patients, he continued to repeat this refrain throughout the evening, in inappropriate moments while we were out in public. My mom would try to hush him but I could see a look of delight light up his face that both pained and warmed my heart.

About two months later, my dad had a medical emergency that sent him to the hospital for two weeks. During that time, his life was saved, but his sense of humor, along with the rest of his personality, was extinguished. He never returned home after that, and was on a series of medications at the nursing home that sapped any remaining vitality out of him.

So I hold on to these precious memories of my dad. Alzheimer’s can claim so much of a person, but it can’t take their past, because that was also experienced by their loved ones.

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