A Tribute to Past Patients

I love being a nurse.  I love the interaction that I have with my numerous patients, though, as I’ve stated before, I’ll always have a soft spot for those with Alzheimer’s. 

I honestly can’t even count the number of patients I’ve had that have touched my life.  Starting as a CNA, I began to realize how much these people influenced my life.  They made me look at life in a whole different way, and they gave me perspective.  Since it's the day after Thanksgiving, I thought I'd say thank you in the only way I know how.

So here’s to the older couple that taught me true love.  The husband always held his wife’s purse and oxygen while she pushed him in the wheelchair.  And they always ordered a dessert to split because they were just as in love as they were as newlyweds.

Here’s to the Doctor who always respected me because I was a nurse.  Even though he was technically my patient, he never failed to tell me that his career wouldn’t have been so successful without his nurses.  He showed me what a true relationship between Doctors and Nurses should be.

Here’s to the sweet lady who reserved her most brilliant smiles for me when we sat together for dinner.  She taught me the importance of slowing down and really enjoying every moment. 

Here’s to the man who believed he ran our facility.  He believed I was part of his staff, and he always told me how much he appreciated me, and he always offered to help me with whatever I needed.  He taught me what a true supervisor should be, and I try and follow his example now.

Here’s to the man who reminded me of my own father.  He made me realize that each one of my patients are related to someone else, and that each of them deserve the respect I would want my family to receive.

Here’s to the woman who told me stories while she ate.  I loved hearing them, even when they were the same stories every meal.  It makes me want to remember the important moments in my own life so that I can pass them on someday.

Here’s to the Engineer who never stopped fixing things.  Even when he couldn’t walk, he still knew how to use a screwdriver.  As someone told me the other day, “If you do something, you’re good for something.  If you do nothing, you’re good for nothing.”

Here’s to the little old lady who spoke to me in English although it wasn’t her primary language.  She was willing to learn and speak a foreign language, and she loved to teach it.  She taught me the importance of respecting culture, even if it’s from the same country.

Here’s to the older woman who fed her cat so much that he got fat and his extra dandruff gave her asthma.  She taught me that those cat ladies do exist.

I wish there was room or a way to acknowledge each one of them.  I wish there was a way to tell their story.  Because as I got to know each one of them, I realized that their disease had an even more devastating effect than most of the others.  They forgot who they truly were, what they’d accomplished in their lives, and they lost the ability to tell their story.

How about the rest of you?  Want to give a tribute to someone you knew with Alzheimer’s?  I’d love to hear their stories!

The Strain of Caregiving

I’ve been exhausted this month.  Not normal exhausted.  Not I’ve been writing every spare moment exhausted.  I’ve been feeling tension and stress more than I have in a long time.

At first I thought that maybe it was work.

Then, a few days ago, I realized what it was.  I was exhausted because of the novel I’m working on this month.  It’s about a family who’s dealing with a grandfather who has Alzheimer’s and hasn’t been diagnosed yet.  It’s exhausting to write: not just physically, but mentally and emotionally.

Working with Alzheimer’s is unpredictable, and when you don’t know what’s causing the strange outbursts of the odd behaviors, it can cause high family tension.  I’ve seen it more times than I can count.  I feel that in my time as a nurse with Alzheimer’s and Dementia patients, I’ve seen families fall into usually one of two categories.  Either they’re very involved, and constantly vising their family member, or they rarely visit and are difficult to get a hold of.

I honestly can’t imagine what it would be like to experience it firsthand.  I’ve seen it through the eyes of a caretaker, as a nurse.  I know that it’s painful and difficult for everyone, and they all respond to the disease differently.  For some, it’s showering their parents with attention, for others, the change is too painful, and they withdraw.

I’m only experiencing it secondhand from a fictional character, and I’m emotionally and mentally drained.  Trying to keep up, sort through the accusations, the anger, the behavior… it’s exhausting.

It’s amazing how much of an impact that Alzheimer’s plays in our lives.  Did you know that it’s one of the top ten diseases and it’s the only one without a cure?  Think about that.  That means hundreds of thousands of people deal with it every day without any hope of improving. 

If any of you are experiencing it right now, I hope you know how much I respect you for what you’re going through.  Please make sure that you have a good support system – one that can take care of you as you care for your loved one.

Provided by the Us Against Alzheimer's Foundation

Why Do People with Alzheimer's Have So Many Behaviors?

When I first became a nurse, I found a job at what I still call ‘the best job I ever had.’  I’d already discovered my passion for Alzheimer/Dementia patients, and this was a private, skilled nursing facility for Alzheimer and Dementia patients.  I could honestly go on and on about the amazing features of this place, along with increased number of staff and the activities, they had round the clock music therapy and art therapy.  How many places can say that?

One of the things that really stuck out to me was that they had 3 full days of ‘office’ orientation.  You know, the boring stuff where you go over policies and procedures, expectations, handbook, etc.  Anywhere else I’ve ever worked had 1 day.  There was a reason why they had 3.  They spent the first day on the normal stuff, but then they took two whole days training us on what to expect with the Alzheimer’s/Dementia population.

There were many memorable lessons I gleaned in those two days, but they had us participate in one activity that just made me rethink everything I knew about nursing, care, and nursing homes.  I know I’ve mentioned this before, but it was so incredible, I think I’ll repeat it again.

We were given six slips of paper and told to write down the things most important to us.

I honestly don’t remember what I put all those years ago, but sitting here right now, here’s what I would put:

1.       Family

2.       Church/Religion

3.       Chocolate

4.       Colors

5.       Music

6.       Somewhere safe to live

We were then asked to fold our responses and mix them up.  Then we were asked to pick one of the cards out of the pile.  Once we’d picked it, we were told that we could no longer have that one particular object.  It was no longer a part of or life, and we’d have to learn to live without it.

I can’t tell you how devastated I felt.  It was something so simple, and I still had 5 other cards, but losing that one particular item made me want to cry.  Then they asked us to pick the second card.  You can probably see where they were going at this point.

They wanted us to see what our residents were giving up when they move into a facility, or even if their children have them stay with them.  Suddenly, they don’t have the independence they once had, and everything has changed.  Maybe they don’t have easy access to a piano anymore, or they can’t get the food they used to eat at home.  Any drastic change like that can throw anyone off, but when you already have difficulty adapting to new environments or maintaining a grip on reality, it can be even worse.

Most Alzheimer’s patients who move into facilities are going to have increased behaviors.  It’s a natural reaction to the upheaval their life has just endured.  They may not understand what’s going on.  I know that my Great Grandpa believed he was in a gas station.  Others have thought that they were at the store, waiting to be picked up by family. 

Imagine how you would feel, if you woke up and you didn’t recognize anything around you.  And then when you get out of the room, a bunch of (hopefully) friendly people tell you that this is your new home.  You don’t know where your family is, and the food they give you doesn’t taste like home.  How would you feel?

Scared?

Angry?

And if you can’t properly communicate, the only way to let them know is by acting out.  Maybe you just scream for several days, hoping that someone would hear you and rescue you from these strangers.  Or maybe you think that they’ve kidnapped you from your home and you start attacking them.  Or you could try to escape, checking each door to see if they’re actually locked.

Unfortunately, this natural, and really – understandable – behavior can cause families and healthcare workers to get impatient.  Instead of looking at the situation from the perspective of their residents/patients, they might punish them, perhaps by not letting them eat a dessert, or by forcing them to stay in a chair.  But the person with Alzheimer’s doesn’t understand why they’re being punished.  It may cause even more behaviors because now they’re even more angry or scared.  It’s a vicious cycle that can’t be broken with the person who has Alzheimer’s. 

It is something that needs to be broken by the people who are there to take care of them – whether that be their family, nurse, CNA or doctor.  They have to realize that they won’t always be able to vocalize their needs or their concerns.  They need someone who can look beyond the physical obvious action and realize the reason behind it.

It can be exhausting, and it can take weeks, maybe even months to find what the patient needs.  Families should not try and do it on their own.  Burnout and exhaustion can often lead to impatience and anger on the part of the provider.  Make sure that you have a good support system, and make sure that you voice your own needs when they arise.

Why I Became a Nurse – Part 2

So last week, I talked about the first time I ever doubted my decision to become a nurse.  The second time was when I became a caregiver at an assisted living that was built specifically for Alzheimer’s/Dementia.  I wasn’t quite sure what I was getting into.  I knew that I wanted to work in Geriatrics, but I hadn’t really decided anything beyond that. 

When I started, I quickly realized that all of the clichés – the confusion, the behaviors, everything else… was all true.  But that didn’t mean that it was miserable or that they were difficult to work with.  In fact, it was just the opposite.  I LOVED my job.  I loved working with my residents.  They made my day so much happier.  Most of the days, I couldn’t wait to get to work. 

I think the one thing that I loved about it was that it was almost as though their disease – as devastating as it is – stripped away all of the false shows that we as humans tend to show.  They were completely honest, even if at times they said something offensive, I knew that everything they said was true in their reality.  I loved the job so much that I began to wonder why I’d even gone into nursing school.  Because in the Assisted Living, I never saw the nurse.  She didn’t work the floor, she didn’t see our residents on a daily basis. 

The whole reason that I’d become a nurse was because I wanted to help others, I wanted to take care of them.  Suddenly, I started to wonder if I really wanted to become a CNA and not a nurse.  I started to really doubt my career path.

And then I met Joe.  Of course, his name wasn’t really Joe.  According to HIPPA, I’m not allowed to tell his real name, but it feels funny not to give him a name at all, especially since he influenced my life so much.  He was a chipper, happy, bubbly man who arrived in the facility around the same time that I did.  He was always quick to make everyone feel better, and he always made me smile. 

Over the course of several weeks, I began to notice a definite change in Joe.  He started to become depressed, he stopped eating.  By the time I left the facility, he refused to leave his bed.  His family threatened to take him out and put him somewhere else because they thought we were neglecting him or abusing him.

But I knew exactly what happened.  His family, because they didn’t understand his disease process, felt it was important to bring him back to reality.  They reminded him of things he forgot.  Which wouldn’t be so bad, if the reminder he constantly received was that his wife had died the year before.

  

One of the things that many people do not realize about Alzheimer’s is that it affects different areas of the brain, which includes the memory and reality perception.  Their reality does not always become ours.  Very often, a person with Alzheimer’s begins to ‘regress,’ which means that they slowly move backwards in time.  They talk more and more about their deceased husband/wife, their mother, brothers and sisters.  They may remember their kids, but they remember them as small children, not as grownups with children of their own. 

The absolute worst thing to do is to tell someone with Alzheimer’s that their reality is wrong.  How would you feel if you experienced that?  Someone came up to you and told you, ‘No, the president isn’t Obama, it’s President Tanner, and the year is 2045.  Not only would you be confused, but you’d be upset because you’d think they were trying to pull one over on you. 

Joe’s family didn’t understand that.  All they knew was that he was confused, and they wanted to fix it.  They hung signs in his room, by the phone, on the bathroom door, everywhere, that said, “Dad, remember that your wife, Debora is dead.” 

Joe didn’t remember his wife was dead.  That wasn’t in his reality.  So every time he read a sign, every time his family reminded him, he went through the grieving process all over again.  Though he didn’t always remember exactly why he was sad, the feelings remained with him.  He became depressed.  And wouldn’t you?  If you experienced your significant other’s death for the first time nine or ten times a day, it would be devastating or exhausting.

As a CNA, I couldn’t do anything for him.  I couldn’t talk to the family.  I couldn’t make a difference.  That’s when I realized why it was so important for me to become a nurse.  I wanted to be his advocate.  He couldn’t express his feelings, and he needed someone to do it for him.

That’s why I became a nurse.  And that’s why I focus so much on Alzheimer’s and Dementia.  Did you know that they’re the only disease who can’t speak for themselves?  If someone has breast cancer, they can tell their family and friends, they can join help groups or donate to the cause.  Most of those with Alzheimer’s don’t even realize what’s happening to them.

And that’s why I think that awareness needs to be raised.  Alzheimer’s isn’t a period of forgetfulness, and it isn’t romantic like the movies show.  It’s a devastating disease that affects every aspect of life.  And unfortunately, right now, the only cure is death. 

I know this was a long post, but it’s an important one.  Please spread the word.  If you want to learn more about the disease, there’s a book called the 36 Hour Day which is just fantastic.  Read it if you get a chance.

Anyone here with personal experience with family or friends with Alzheimer’s?  I would love to hear your story!

Why I Became a Nurse

My great grandpa was diagnosed with Alzheimer’s when I was very young.  I don’t remember very much of it, but I do remember the way that my grandma and her sister would keep all of us updated.

“He thinks he’s in a gas station and that the nurses are holding him hostage.”

“He keeps fighting because he wants to go home.”

These are things I remember them saying.  Whether or not that’s what they actually said, I’m not sure.  I was only six or seven at the time.  I do remember visiting him once and thinking that something was different about him.  He wasn’t the same man that I remembered.

I also remembered watching the nurses who took care of him.  They were all very pleasant.  Very happy.  They made me want to do the same thing as them.  I wanted to take care of people when they got old. 

I remember the moment that I decided my career path.  At the ripe old age of seven, I knew what I wanted to be when I grew up.  I was going to be a nurse for old people.  My parents didn’t discourage me, but they did make me learn how to say geriatric instead of old. 

I grew up convinced that I wanted to be a nurse.  I used to unbend paperclips and stick them in stuffed animals and dolls so that I could practice giving shots.

There were only two moments that I ever questioned that decision.  I want to tell you about the first today.

A few years after I decided I wanted to be a nurse, my dad took us to see the musical Oliver!  During intermission, my little sister began swinging around my dad’s legs and fell, splitting open her chin.  Blood gushed everywhere.  I’d never been so terrified in my life.  For the first time, I began to wonder if I’d made the right decision.  Because of the amount of blood, we were all rushed backstage where they tried to patch her up.  When they couldn’t, my dad drove us all to the hospital where my other sisters and I waited in the waiting room while my sister went into the emergency room.

It took me years to overcome my fear.  I was convinced that I was afraid of blood, which is a slight drawback to becoming a nurse.  Despite all of that, I was still convinced that this is what I wanted to do. I wanted to be a geriatric nurse.  Years later, when I did go to nursing school, I realized that it wasn’t a fear of blood.  I was afraid because I didn’t know what to do.  I was afraid of not being able to help her.

Looking back almost twenty years to that decision, it was the best one that I ever made.  Geriatrics is one of the best fields in the world, and I had the advantage of being able to work in multiple facilities focused on Alzheimer’s.  I love the field, and I love all my patients.  They’ve taught me so much about myself and about life.

Becoming a nurse was the best decision I ever made.  How about the rest of you?  Do you have anything you’ve done that you’d never change for the world?

November

November is finally here!

For those of you who don’t know what that means, it means that writers across the world are frantically writing as fast as they can, trying to up their word count before time writes out.  It’s the time to forget about sentence structure, and about precision and accuracy.  It’s about getting those words onto the page.

Friday night, our NaNoWriMo group met at 11:30pm in the only place in our tiny little town that stayed open past midnight: McDonalds.  We met, talked, ate and then anxiously waited until the fateful time when we could begin writing.  Last year, this McDonalds was brand new, and it was a ghost town.  Not so this year.  I’d never seen so many people crammed into one space. 

Our group did a countdown to midnight, and the rest of McDonalds joined in, probably expecting something exciting to happen once we hit zero.  And something spectacular did happen.  Nine or ten different worlds opened up at midnight.  New characters came into being.  Stories that might never have been told began. 

Too bad those in McDonalds couldn’t see it.  All they saw was that a large group of people on computers counted down until zero and then began writing on their laptops like nothing happened.  I did get a pretty big chuckle out of their confusion.

This year, I’m trying something very different.  Writing is always about the journey, about trying something new.  Last year, I finished my fourth YA Fantasy novel, and I’ve got to say, it’s probably the best one that I’ve written.

This year, I decided to try something new.  I’m used to writing teenagers, love stories and fantastical worlds full of magic and danger.  I wanted to push myself to a new level.

This year, I’m writing about a woman in her 40’s.  She’s married and she already has three kids, one of them being a teenager.  She’s dealing with life itself, that after “happily ever after.”  One of the reason why I decided that I wanted to focus on this was because I wanted to write a book about Alzheimer’s.  It’s such an important topic, yet I keep seeing it romanticized. 

Alzheimer’s is a devastating disease, on all accounts.  It’s a change in personality to the point that when you’re interacting with that person who has Alzheimer’s, you’ll never get them back – not completely.  There may be moments that they seem to come out of their fog, but that moment becomes less and less common.  They slip into their own world, leaving those behind to learn to deal with the loss.

In the first two hours of November, I was able to write just about 2,700 words.  Almost immediately after, I went to sleep.  When I woke up, I saw this on my twitter feed.

How appropriate is that?  November is National Novel Writing Month and Alzheimer’s Disease Awareness Month.  I feel like the two of them are converging into my novel. 

That being said, I’m going to use the month of November to give you updates on how my novel is going, and I’m also going to be sharing my own experiences and knowledge about Alzheimer’s.  I would love to hear any of yours!  The best thing we can do to take care of those with Alzheimer’s is to advocate for them.  They’re the ones who don’t have a voice.

Happy November!