How to Think About the Legacy You Leave Behind

A road through the forestWho would’ve thought that a mundane spreadsheet I’m creating for my mom would get me thinking about life, death, and what remains when we’re gone?

Certainly not me; however, that’s exactly what happened.

But, first I have to go back to 1983. After a brief, but excruciating battle with lung cancer, my father-in-law passed away at the age of 48.

I was only 22 at the time and didn’t have much experience with death. We had just returned from the hospital grief-stricken that a strapping, six-foot-five-inch man, who “hadn’t been sick a day in his life” was gone.

I remember my mother-in-law asking me to get a sweater from her bedroom. When I stepped through the doorway something caught my eye. It was his work boots. They sat next to the bedside table quietly insignificant other than their dark color, which contrasted against the blue pastels of the room.

Then the realization struck me; these boots stood for all that was left of the man we knew and loved. They represented his legacy and the core of who he was. These well-worn, beaten Wolverines spoke to all that he accomplished over the years, including a successful construction company. 

Sure, there were lots of other possessions: clothing, toiletries, sporting goods, tools, books, paperwork, memorabilia, and so much more. Years later we were still finding his belongings, tucked away in boxes and drawers.


It was then I understood how death is a great equalizer. It shows no bias or favoritism. Death doesn’t care who you are or what you’ve acquired in life. It takes our most valuable possession and leaves the rest behind. 

As a young adult, I’d always felt that death was too far away to worry about. However, that jarring discovery enlightened me. With the passing decades, I’ve watched the gap between my youth and old age slowly shrink and I’m aware of it now more than ever.


List_REV

My mom has a list of phone numbers written on a lined sheet of white tablet paper. The front is covered and it continues onto the backside.

There are notations in the margins, old numbers crossed out, new ones written in, some unidentifiable smudges, and a faint coffee ring near the bottom. 

It consists of family, friends, neighbors, favorite restaurants, doctors, and the skilled nursing facility that became my dad’s last home. I’m not sure how long she’s had it, but it has definitely seen better days.

I decided to type it all into a spreadsheet, sort it alphabetically, and make it easier for her to read with a larger font. As I entered each name and number I crossed it off on the paper. 

Glancing down the list I noticed how her handwriting changed as it grew longer. The script slowly became shaky over time and reminded me of the notes my grandma used to write. 

Suddenly, that tattered paper took on new significance. I stopped crossing out the names so I could salvage something that was uniquely hers. Instead, I started putting a check mark next to them. 

The entries themselves told a warm and familiar story: Patty’s Clippers & Cuts, Dr. Jill, Plaza Pizza, D’Onofrio’s grocery delivery (Tues. & Thurs.) and Vets Fish Fry, among others. Each name and number signified a small slice from the lives of both my parents. 

Then there are the intangibles; those things that can only be felt. The love, kindness, and life lessons given from the heart. The funny nicknames and the faint sound of laughter if we close our eyes and concentrate. A special song or dish at Thanksgiving; the fragrance of a certain cologne.


It’s funny what we leave behind. There’s a wealth of physical items that are easily identifiable and some that baffle the survivors.

We don’t recognize as we accumulate our stuff that it tells a small part of a larger story. These are things that are packed up for charity, passed along as mementos, or kept for the connection they provide to our loved one.

Unsuspecting things, like a handwritten list that can never be duplicated or a voicemail that relives the past, if only for a few moments.

We leave much more behind than what’s stored in the basement or in our bank accounts. We leave memories of who we are and how we lived.

What kind of memories will you leave?


 

 

 

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How To Better Understand A Loved One With Alzheimer’s

NOTE:  I wrote this after viewing the Edge of Humanity Magazine’s post on March 6. The title is The Faces of Alzheimer’s Disease, a contribution of portrait photography by Alex ten Napel. Please take a few moments to view the images here.


Alzheimers FaceREV

If you’ve ever spent time in an Alzheimer’s/Dementia unit then these faces should look familiar. 

Not the individuals themselves, but their expressions and the moods they reflect. These faces range from thoughtful and smiling to frustrated and expressionless. They’re like the ones we all display at various times. 

The difference is that ours are prompted by clear thoughts and emotions, triggered by specific circumstances. An Alzheimer’s patient often can’t account for what they’re thinking and feeling at any given moment. 

The folks looking thoughtful may actually be unable to focus, their minds overrun with many simultaneous thoughts. They quietly struggle to locate memories or ideas.

Those who are smiling with amusement sometimes do so for no apparent reason. At times they’ll burst into giddy laughter as if they’re privy to some joke that no one else knows.

Then there are the angry, frustrated episodes as the patient lashes out with rage and profanity at everyone around them.

A blank stare can indicate that the person has momentarily disappeared deeper into the fog that is gradually taking over their conscious mind.

The unpredictability of these mood swings is unnerving for family and friends who are slowly watching their loved one slip away.


Alzheimer’s is a progressive neurodegenerative disease that destroys healthy brain cells. The symptoms worsen over time and a person can suffer with it from four to eight years on average. Depending on the circumstances some people have survived up to twenty years after diagnosis. 

ChangeChanges in the brain begin to occur years before any symptoms present themselves. This is referred to as the “preclinical” period. 

Looking back I recall times when my dad behaved oddly or had difficulty doing a task that he’d done a hundred times.

He took medication for high blood pressure, cholesterol, and diabetes for years, but, we weren’t aware of the changes occurring in his brain.

I don’t know if his doctors warned him about dementia as a possible outcome of his other conditions. If they did he didn’t share that information with our family.


The Three Stages of Alzheimer’s

  • Mild (Early Stage) – In the earliest stages of the disease, the person is still able to function independently. They continue their normal routines with only slight lapses of memory and minor confusion. Family members may begin to notice their difficulties. A trained physician can detect problems with concentration and memory through a detailed exam.
  • Moderate (Middle Stage) – This is the stage that typically lasts the longest, sometimes for years. Symptoms become much more obvious and the loved one requires a greater level of care. 
  • Severe (Late Stage) – Patients in this stage require full-time assistance with daily activities and personal care. They have difficulty communicating and lose awareness of their surroundings. Their physical condition worsens along with their mental state.

Alzheimer Brain

It’s important to become familiar with these stages so that caretakers can understand what the patient is experiencing.

The confusion and disorientation that begins in the middle stage influences the person’s perception of reality. 

They also experience communication problems. At times they have difficulty expressing their thoughts and feelings and can’t understand what others are saying. They struggle to remember the meanings of words.

This level of disorientation creates fear, anger, and embarrassment.


Despite the ongoing challenges, there are strategies available to handle these problems. Marie Marley has authored two books and numerous articles on ways to deal with the behavioral issues of dementia patients. In the past, she has focused specifically on the very difficult job of being a caretaker.

However, after reading The Best Friends Approach to Alzheimer’s Care Marley realized that she’d never considered how the patient feels. The book, written by Virginia Bell and David Troxel, explains it in a way that the reader can experience those feelings. 

In Marley’s post, she gives an example from the book that really drives this point home. The authors remind the reader of how it felt to be called on in class and not know the correct answer. Then they point out that life for an Alzheimer’s patient is living in that classroom every day and never having the correct answer. 

 Education is the key to understanding how the illness affects the patient both mentally and physically, and how to manage their care more effectively.


The  Alzheimer’s Association is an excellent starting point for your research. They are the leading voluntary health organization committed to caring, support, and research for Alzheimer’s/Dementia patients and their families.

Because there is no cure, Alzheimer’s eventually renders the person completely dependent and powerless.

But, knowledge is power and being able to provide compassionate and informed care is something that benefits both patient and caretaker.

It is also the best and final gift we can offer our loved one.