Category Archives: Resources

It Can All Change in an Instant

    1. When he woke up that morning, he had no idea that a stroke awaited him in the afternoon.  His wife said he was “fine in the morning.”   
    2.  Another man was shopping with his wife in a local retail store when he began slurring his words and speaking nonsensical phrases.  Someone in the store immediately dialed 911.   
    3. Grandma was cleaning her house as she usually did – in her dungarees that she wouldn’t want anyone to see her wearing – when she collapsed and became paralyzed both physically and vocally.   She was found when she didn’t respond to my Aunt’s daily check-in phone call.   
    4.  We were having a simple conversation in the emergency room, awaiting an open operating room.  Uncle Warren, in mid-sentence, was immediately silenced as his face fell against the right-side bedrail, his mouth drooped to the same side, and he could not find his words or voice; and I saw the panic in his eyes.  

These were four very different, very vibrant people who were all ambushed by a cerebrovascular accident.  The medical acronym is CVA.  Most of us call them strokes.   You can find data on strokes in the United States at the Centers for Disease Control and Prevention here.

The data are alarming, but it’s not data that I write about today.  Instead, I’m writing about the effects these strokes had on these once very vital individuals and the people who loved them.  Each of these people suffered physical dysfunction following their strokes.  Some were paralyzed on their left side; others on the right.  All four of them went through extensive rehabilitative therapy to re-learn how to speak, write, or walk.  All four of them lived after having the initial stroke; but they each lived in very different ways.

The first man could no longer speak except to respond “yes” or “no” to simple questions.  He could not move his arms and legs on his own; he could no longer enjoy reading his newspaper or sipping his morning coffee.  He could no longer speak to his family. He was totally dependent on nursing home staff for all of his care until his death several months after the initial stroke.

The second man fared a bit better after his rehab therapy.  He regained the ability to speak in simple sentences; he could still enjoy a meal with his wife and take in community events at the local college.  But he could no longer teach and that broke his heart.  He died about a year after his initial slurring of words in the department store.

Grandma needed to learn how to write with her left hand after 80+ years as a “rightie” since she could no longer talk.  Grandma had two more strokes over the next year, which eventually led to her death and with each stroke, she lost more abilities:  She could no longer speak words but she was somehow able to sing along with “Jesus Loves Me”.  She could no longer write but could spell out words with those colorful plastic letters that most homes with children have on their refrigerators.  She was dependent on others for all of her care.

Because we were already in the emergency room, Uncle Warren received immediate benefits of a tPA injection (tissue plasminogen activator defined here).   He was eventually able to regain some use of his debilitated left arm with intensive rehab therapy.  But because he could no longer walk on his own (due to severe vascular/circulatory damage in his legs), he needed to move into a nursing facility after he plateaued in physical therapy.  He was not happy about his change in housing; but he had no other options.

All four of these lives were changed in an instant.  The loss of communication forced family members to make decisions that may not have already been discussed.  I don’t know if the first two men’s families had had previous conversations to know what kind of care and treatment they wanted in the case of a debilitating stroke.  I don’t think my Grandma had any written documents about her wishes but my Aunt took her into her home and cared for her until her death, with the help of my Dad and all their siblings taking turns and pitching in.  My Uncle had documents and we had some peripheral conversations.  But it wasn’t until he explicitly told a vascular surgeon, who suggested double above-the-knee amputation, “I want to meet my Maker whole” that I knew his full and complete wishes.   Hearing him say those words so emphatically gave me the courage to advocate for him when other medical professionals wanted to continue procedures and treatments that would be of no benefit to him.

Because we can each be felled by a medical crisis and have our lives changed in an instant, it is vital to have conversations with our loved ones and our doctors about our wishes.  It’s never too early to begin these conversations, even though starting them can be scary and difficult.  But it can be too late.  “Too late” can arrive in an instant.

Caring Choices wants to help families have these conversations before it’s too late.  Call us today (570-428-2021) to schedule your family’s initial conversation or a presentation to your community group.

(c) 2014 Caring Choices

“Survival” Kit

Many national and healthcare organizations urge families and communities to be prepared for emergencies and natural disasters. 

You know from reading this blog that I believe passionately in the importance of having conversations and sharing information so that each person can be prepared as fully as possible for the end of life.  Below, I’ve taken a few commonly recommended “supplies” from these “survival kit” lists and added a column showing an equivalent preparation that can ready us for death and surviving bereavement.

Survival Kit
End of Life Survival Kit
Water / Food (non-perishable, easy to prepare)
Nourishment – As our physical bodies prepare for death, we no longer need water and food in the “normal” sense.  Instead, we focus on fulfilling other senses:
  • needing to hear our loved ones’ voices
  • wanting to feel the touch of a hand or hug
  • wanting to see loved ones a final time
  • enjoying the smell of favorite flowers or foods (even though we can no longer eat)
Flashlight, Radio, Batteries
Guide – It can be helpful to have someone by our side who can lead us through the darkness.  For some that might be a pastor/priest. For others, it may be a friend reading from a favorite book or someone sitting quietly, holding our hand.
Copies of personal documents (medication list deed/lease to home, birth certificates, insurance policies)
Identity – Death does not claim our identity.  We leave people behind who love us, who will remember and will miss us.  Making legacy documents (videos, letters, photobooks, etc.) can ease the grief of those we leave behind.
Baby supplies; Games and activities for the children
Consider the family – When a family member is dying, there may be multiple generations in the home.  It can be beneficial to engage all ages appropriately for being around or providing care of the dying loved one.

The final section of many survival kits suggest keeping supplies handy that are specific to disasters you could face in your community.  People living along ocean coasts will likely have different supply needs than someone living in “Tornado Alley” or near a nuclear power plant.  And so go the differences in the needs of the dying and those who love them.  Each individual will have a different experience with death not only physically (biologically) but also psychologically, spiritually and socially.  Some of us will die peacefully in our sleep in our own bed in our own home surrounded by loved ones (relatively few, unfortunately).  Others of us will die tethered to tubes and wires in intensive care units either by our choosing (“do everything”) or by accident/trauma combined with lack of plans/documentation.  Still others of us will die in skilled care facilities following slow-progressing serious illnesses; or in hospitals following an acute attack or disease.

In most instances, when and how we die is not necessarily under our control.  However, talking about and being prepared for our inevitable death IS under our control.  We can choose to ignore it and let our loved ones figure out what we would want them to do or we can address our guaranteed mortality and tell them what we want (or don’t want).  The more we can plan and prepare them for our deaths, the better able they will be to advocate for our choices and save themselves feelings of burden making the ‘right’ decision or the guilt of not being sure of what to do.

Caring Choices is ready to help you talk about and prepare your family’s “End of Life Survival Kit”.  Doing so can alleviate decision-making burden and prevent feelings of guilt. Are you ready to get prepared?

© 2014 Caring Choices