If your days on Earth were numbered, what would you want to do most?

This question is sometimes talked about, but when push comes to shove what would you really like to do as your time comes to an end?

For most of us it would involve an activity we enjoyed, perhaps where we felt the most peaceful within ourselves and with the world.

This Vietnam vet requested to do just that … he wanted to go fishing one last time.   I’m sure it took some inventive thinking and extra effort on the part of this man’s family, friends and caregivers but they made sure it happened for him.

Why?  Why do this?  Simply for this reason: make every moment count.  Take every day you have whether 1 or 100,000 or 1 million and find joy in the living of that day.

Gone Fishin’

Why I pretend that I’ve never heard that story before

I work with seniors, most of them have some level of dementia.  I care for their most personal needs.  I help them eat.  I help them with bathing and toileting.  I wipe their hands and faces.  I dress them and change their Depends.  I put bibs on them.

For all of this, they tell me their stories – often and repeatedly.  Every time I react as if I was hearing their story for the first time.

Why do I do that?  Because it is what they have left of their dignity.  It makes them feel important.  It lets them remember with pride their younger life while they have to live with the humiliation of needing assistance with the most basic of daily activities.

It is important to them to have their stories heard, acknowledged by another human being.

They need to know their stories hold value.

They also have a disease that means they cannot remember telling me their stories.

So, each time they tell me their story it is, to them, the first time.  This means that if I’m dismissive to their story because I’ve already heard it, to them I’m being dismissive to their pride, their humanity, their value as a person.

So, I listen to their stories with the same rapt attention each time.  I rejoice in their achievements and successes.  I laugh at their humorous anecdotes.  I sympathize with them over their losses.

As I bathe them, I laugh at cute stories of their children.

As I clean them up after using the toilet, I smile as they tell me about their school day hi-jinks.

As I get them  dressed, I cheer for their personal and professional successes.

I acknowledge their value as everything is being stripped away from them by a horrible disease, this is why I listen to the same stories over and over again responding as if it was the first telling.  I am giving them something back.

Dignity.  Honor.  Pride.  Humanity.

 

Brief But Spectacular … Early Onset Alzheimer’s

There’s a PBS series of short films called Brief But Spectacular.  They pick various topics and film people talking about them.   I’m sharing one they did on Early Onset Alzheimer’s Disease.  It’s only just under 3 1/2 minutes and a good watch.

Brief But Spectacular

Early Onset dementia (including Alzheimer’s) is defined by anyone who becomes symptomatic before the age of 65.

My father was early onset Lewy Body Dementia, he was diagnosed at age 54.

The gentleman in the video refers to the fact that he’s in a new life.  There is a great deal of truth in that, for the patient and their caregiver(s).  My family entered that new life in 2003 and it was a steep learning curve.

June is Alzheimer’s and brain awareness month, pass the word on.

How can you do a job like that? I could NEVER do something like that!

love best medicine

When I began my journey as a caregiver I had people asking me how I could do such a thing, that they would never be able to do that.  They wanted to know how I could stand to see to the most personal needs of my father and then grandfather.  They couldn’t understand how I could find the compassion and patience to spend 30 to 45 minutes feeding my dad four or five times a day.

The simple answer is they’re family and that’s what family does.  The deeper explanation is, they did it for me.  From the time I was born my family has been there caring for me.  THEY changed my diapers.  THEY fed me.  THEY dressed me.  THEY bathed me.  I spit up and threw up on THEM.  I bled on THEM.  When I cried THEY comforted me.  THEY taught me, loved me and encouraged me.  How can I not reciprocate when THEIR time of need comes?

To that people will often concede the point but now that I have lost both Dad and Grandpa they ask why I continue to do this for strangers.

The honest truth is two-fold.  First of all, once I meet the people I am charged with providing care for they are no longer strangers.  They become surrogate family members.  I care for who they are as a person.  I try to learn about who they are, what makes them happy and how to encourage them.   They often have as much of a positive influence on my life as I hopefully have on theirs.

Second, I think of all the people outside of my family who had an impact on who I am today … teachers, neighbors, family friends, camp counselors, clergy, and random strangers providing random acts of kindness.  Most of these people are no longer in my life, but each of the people I care for were the teachers, neighbors, family friend, camp counselor, clergy or random stranger providing random acts of kindness for someone else.  So in my mind, in some odd concept of karma or whatever way you’d put it, I am returning the favor to a stranger in hopes that someone else is doing the same for those non-family members who had a positive influence on my life.

I have another reason for doing what I do.  I have seven wonderful nephews and four awesome nieces.   I believe the best way to show the future generation how to be compassionate, active, caring adults is by example.  I hope that by demonstrating to them how we should care for our family and strangers that I will have done my part to make the future just that much brighter.

So, to answer the question “How can I do something like what I do?”

I do it joyfully with hope, compassion and love.

Don’t stick your foot in your mouth

It happens to all of us, at some point in time we will find out someone we know has a terrible disease or is hospitalized from an horrific accident or any number of painful personal tragedies.

For most of us the shock of this news strikes deep.  These are things that happen to people far outside our social bubble.  Your world has shifted slightly on its axis and you don’t know how to interact with those who have been affected.

You go to visit your friend or co-worker in the hospital and freak out a bit by hospital tubes, wires and machinery or by the physical changes that have taken place.  You tell their spouse that your friend or co-worker looks unrecognizable!

You visit your cousin with cancer and shudder when you see her bald head.  You blurt out that it is horrible that they’ve lost their lovely hair!

You want to be supportive, but you need to talk about the feelings you’re having as well.

What do you say and to whom do you say it?

I’ve seen something that is referred to as Concentric Circles of Caring.  This is a good guide to figure out who you should offer comfort and support to and who you can express your more negative feelings to.

Concentric circles of caring

 

The concept is quite simple.  Imagine (or draw if you need) a small circle.  This circle represents the person who has the illness or injury.  They are allowed to vent their fears and concerns to anyone.  They should not have to bear the emotional break-down of any other party.

Around that circle is their next-immediate personal support.  This may be a spouse, parent or caregiver.  They can vent to anyone except the person in the middle.

Now another circle, the siblings, children and close relatives.

And another, this time it’s other family, and friends.

And another, co-workers, and casual acquaintances.

Finally there’s everyone else.

The key here is to offer comfort and support to anyone who is in a smaller circle than yours.

If dealing with illness, death and dying is something you just can’t do with a brave face then offer your support in other ways.  Offer to make casseroles that can be frozen for convenient meals.  Offer to help carpool kids to practice.  There are a lot of day to day things that can become overwhelming for those in the innermost circles, find out what will relieve that pressure from their lives and do what you can to help.

When you need to vent your feelings of pain and anguish at the situation always go to those who are in your circle or one outside of your own.

If you remember to comfort in and vent out you should be able to keep from putting your foot in your mouth by saying something potentially insensitive to someone who’s already dealing with too much pain.

Scary!

Each state has an agency that is responsible for investigating reports of abuse or neglect of seniors by care facilities and their staff.  These findings are supposed to be available for the general public to help inform them of which facility may be the safest for their loved ones.

Recently the main newspaper of my neighboring state did an audit of actual complaints vs what is available on the agency’s website for public reference and they found a huge discrepancy.  It makes me wonder if Oregon is unique in this or if a similar audit for other states will show the same results.

Oregonian’s Audit of Nursing Care Facility Complaints