My Journey as an Alzheimer’s Caregiver (post)

alzheimer-cover

You are most welcome to request the PDF version of this under Books.

For about 10 years I was primary caregiver to both my elderly parents. In 2006 my mom was officially diagnosed with Alzheimer’s.

My Journey as an Alzheimer’s Caregiver

A Child Arrived

In the late fall of 1994 a child came into my life. No, I didn’t become a mom or a grandmother or even an aunt. The child was my own mother. Sound familiar?

Anyone who has ever had a loved one diagnosed with any form of dementia knows what I am talking about.

When new child enters your life you and everyone else are thrilled at the arrival and looks forward with great anticipation of coming milestones such as their first real smile, the first time they roll over in bed, learn to eat, walk and run by themselves, potty train, go to school, graduate, get married and start their own family.

Well, the sad truth about Alzheimer’s is that instead of learning this new “child” is going through a process of “unlearning”.

They will slowly forget simple things like where they put their glasses or keys. No big deal at first. Everyone does that once in a while. A dementia patient does that all the time. Then comes putting items in inappropriate places such as a purse or wallet in the refrigerator.

Initially we try and deceive ourselves into believing that well, ok, she had her purse over her arm and stuck it on a shelf next to the milk. Again, no big deal unless of course she completely forgets where she left her purse and this is the fifteenth time she’s done it.

As each day passed I watched a healthy 69-year-old woman lose interest in life and everything around her. At first I thought it was mainly due to losing a second sister to leukemia. Looking back I’m sure that had a lot to do with her withdrawal from life.

Please don’t get the impression that you see what’s going on at the time because nothing could ever be farther from the truth.
I watched her forget where she put her glasses. Big deal. So what? Well, it is a big deal when the apartment was only 960 square feet all on one level.

Everyday she would draw into a shell a little bit further. She slept more. She did less. The only thing that didn’t change was her eating. I guess that isn’t quite true. She slowly ballooned from about 175, which was still overweight to over 225 pounds.

One thing I wish that I had known from the very outset is not to even consider going through this alone. Oh, I see you snickering.

Huh, this doesn’t scare me! I’m a single mom with three kids and a dog and I manage very well…so there!”

‘Em…..not so much my dear.

Your children and the dog are able to learn, absorb and remember what you are teaching them. Your loved one with Alzheimer’s is just the opposite.

Their mind is regressing back to toddlerhood. The one major difference is that they still have an adult vocabulary and aren’t afraid to use it.
No point in scolding Mom when she gets frustrated and mouths off since she no longer understands or will even remember.

Living with a child when she’s your Mother

In the spring of 2006 my mom Betty was diagnosed with Alzheimer’s. It wasn’t exactly a shock as she had been exhibiting the behaviours for more than ten years.
As anyone reading this book already knows or, unfortunately is going to find out very quickly, Alzheimer’s is vicious, cruel and insidious.

When you’ve had to remind your, let’s say, Mom to give you give you something or to do something 16 times you’ve only told her once. Harsh? You want to believe it. It’s harsh, cruel and downright sadistic for her, for you and everyone else.

The following article was writtten in 2001 long before her official diagnosis

Caregiving
or
Just how did I get myself into this?

Some days I have absolutely no idea just how I got here but they say that everything you do in life leads you to where you are going. I’d sure like to know who ‘they’ are and ask them just where the heck I am supposed to be going. Unfortunately they likely wouldn’t tell me and insist that I find out on my own.

Anyway…where I find myself at the moment is more or less ‘full time care giver’ to my elderly parents. Oh yeah, never fear life is anything but dull in our house!

Challenges

Time…where did it all go?

One aspect of care giving is that it can take up a lot of your day, so you’d better be organized and very flexible. Setting specific times for things even as simple as laundry can really make a difference.
Over the past two years my mom has become a laundry hoarder. She can have it all over her bedroom and not even realize it. I gave up a long time ago trying to get her to put things away on her own or even into the laundry basket.

She’s not purposely trying to drive me crazy (I think) it’s just that she can get sidetracked faster than I can sit here and type the word. I’ve slowly learned that when I need to do her laundry it is a project from start to finish.

In the kitchen…back away from the stove!

When dealing with elderly parents it is often best to keep them far away from the stove. Mom used to do most of the cooking until about 4 years ago but now I just don’t feel comfortable letting her near sharp knives and hot burners. The safest way she can help is to set the table or make salads.

Organization

as in Val… “Do you know where____ is?” Well…they would know if they had put it back where it belongs. Unfortunately their forgetter is definitely getting better than their rememberer.

Here again I’ve learned I have to be totally dedicated. When I discover a common item that everyone uses and it’s not where it belongs I’ve been known to stop in mid stride and put it away. It just isn’t worth having to hunt for it later.

Energy

As in don’t even think about trying to be Super Kid. Who cares if the kitchen floor is a bit grungy? Even June Cleaver didn’t do it all.

Hey wait a minute…
She didn’t do any of it. That was a TV show!
Scheduling three people’s appointment plus working on my writing career is no ordinary task as nine out of ten people reading this article can tell you.

It would be nice to have a life in here somewhere!

The absolute NUMBER ONE thing we care givers must remember that we really do have our own lives.

We can only look after others if we look after ourselves first.

I need to make certain that there are specific days and times during every day that are absolutely mine unless of course there’s a genuine crisis in the works.

Fresh air and exercise are also extremely important. Every day that I can I go for a long walk.

Support

Another area that is absolutely vital is outside support. Outside the family that is. Family members tend to get caught up in being too close to the forest to see trees. They see the ‘patient’ as they remember them when they used to live with them on a daily basis. Sometimes that can be a very long time ago especially for a sibling.

Fortunately most of us these days have a friend who is in much the same position as we are. My very dear friend Jeana, who is also my massage therapist, has lived through the same challenges in her own family. She is somewhat younger than I am but is definitely a ‘wise one’.

Rewards

No kidding there really are some! I guess the biggest one is the fact that at least for the foreseeable future both my parents are healthy enough to still be living at home rather than a care facility.

Being able to work on my writing career from home is a very big plus.

Throughout the years my mom became more and more like an enormous two year old. She was five foot six and weighed about 225 pounds. The one major difference was that she had the vocabulary of an 81 year old sailor and wasn’t afraid to use it.

Until Alzheimer’s my mom rarely swore except when she couldn’t find her glasses or house keys.

I was to learn that misplacing something is not Alzheimer’s. Failing to recognize it when found or not remembering what it is for……is a huge Alzheimer’s red flag.

You see, when we are young our brain is geared for learning by recognizing and then remembering things like tying our shoes. Old age doesn’t mean an automatic Alzheimer’s sentence. What Alzheimer’s does mean is that our brain is no longer capable of learning and remembering and begins to lack understanding and also begins to forget.

So dear reader if you are finding yourself in the position of having to begin caring for a loved on with Alzheimer’s please remember to seek out professional help and, of course, your local Alzheimer’s Associations.

You certainly needn’t feel embarrassed or nervous…..everyone there is well equipped to assist you with knowledge and first hand experience.

Please. Please. Please…..do not even for an instant consider being on this journey alone. It just doesn’t work……..ever.

Update September 2016
With all the recent treatment options and excitement over slow downs and in some cases reversals of the process it is very encouraging to finally get a sense of light at the end of the tunnel and within perhaps the next twenty years Alzheimer’s will be on the extinction list.

My mom passed away from Alzheimer’s in the late fall of 2010 at the age of eighty-five.

The Joy of Books

The earliest known example of ‘books’ are the cave drawings at Lascaux in southwestern France. They were discovered by 18-year-old Marcel Ravidat on September 12, 1940. The drawings have been dated to be approximately 20,000 years old.

Cave drawings are essentially books drawn by our ancestors to teach their children about family and tribal traditions.

Lascaux II, a replica of parts of the caves opened in 1983. The originals had been suffering damage from over exposure to humidity from visitors’ breath and handling.

In the first century BC Buddhist monks carried special palm leaf books on their travels through Persia, Afghanistan, Iran and China.

In 1439 a young German blacksmith Jahannes Gutenberg became the first European to use moveable type.

His first book was the Holy Bible. It has since been printed over 6,000 million times and translated into over 2,000 languages.

From earliest childhood we are drawn to them. As babies we love to us them as teething toys. When we get a little bigger we actually start paying attention to the pictures.

As older kids we hide under the covers at night with a flashlight and read until we finally fall asleep from exhaustion. The beautifully woven stories and breathtaking illustrations magically transport us to faery lands or hidden pirate treasure. When we’re old enough we finally ditch the flashlight.

I had the enormous privilege of being raised by parents who were definitely book worms. It was a nightly tradition to be read to or read on our own as part of going to bed.

For me Christmas is all about traditions. My favourite of course is the original Christmas story….the birth of Jesus Christ. Without Him, we wouldn’t even have Christmas.

We love traditions especially when they are about the holidays. We put the tree up on the same day each year. We have a favourite star or angel for the top. The reading of a traditional family favourite, especially aloud, is always a wonderful memory for the season. If you do not yet have one give yourself a wonderful gift and start now! It doesn’t matter whether you are in a house full of children or just sitting at home with the dog and cat.

We poke around in our favourite bookstores for hours to find that special gift for loved ones in our lives and it doesn’t seem to matter what the subject is. We get lost in them all from new and classic faery tales to the latest version of events shaping our little rock called Earth.

Without books we would never know the great wit and wisdom of Erma Bombeck or the Victorian world of Charles Dickens.

Books can even smell good especially old leather bound editions glued together and bound with catgut. One of my favourite memories of books is my maternal grandparents’ enormous collection of books at our family cottage on the shores of Lake of Bays near Huntsville, Ontario.

Books are old and comforting friends in our modern and crazy Internet world. Besides, to be honest, just how much fun is it really to sit in front of a computer screen and read?

Books are a whole lot tougher than computers too, they never crash! We can even read them in a power outage. Hey, all you need is a flashlight!

Books educate, illuminate, encourage debate, and just plain fascinate. Aren’t books cool?

As you can plainly tell I love to read. I also love to write and have been doing so for many years. I write mainly children’s stories and poems but love to tackle new and interesting projects on practically any subject matter.

My first major foray into the world of publishing is a story and colouring book entitled Sunny’s Grand Adventure. Sunny is a daisy who wants to fly. My very dear friend and illustrator Pam (P.J.) Masi and I self published ‘her’ in the fall of 2004.

So many people tell us that they love how she reaches for her dream no matter what others might think and that we all need to do the same.

So give the gift of delight and wonderment this holiday season or any time of year!

Have a good holiday everybody!

Love,
Val

 

Connect to other places

Encouraging children and adults to read or learn to read

Books can’t crash or start slowing down

My love of reading and writing

Sunny’s Grand Adventure    1st article

Fun and Frolic                       2nd article