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Can a caregiver ever truly be carefree, even for a moment? 
Started by eKIM
08 Jan 2014, 3:26 AM


Recently, I read a comment from a woman who said, “Since my husband’s diagnosis of terminal cancer, I have had not had one single carefree moment.  I really, really do miss carefree moments.”

I have given her statement a lot of thought over the last few weeks.  Unless one has “walked her path”, it is not possible to know how one would react in similar circumstances, however I do believe that contemplating such issues is a good thing.

From a practical point of view, as a caregiver, one must maintain (as much as possible) an emotional equilibrium; otherwise it is not a good situation for both the caregiver and the one being cared for.

But how, in a practical (as opposed to philosophical) way, can someone have even one carefree moment in the face of heartache?

For people who are grieving, or are performing the duties of a caregiver or have huge problems, this might seem unattainable – but is it? 

I ask the following questions, and seek the compassionate responses from others, because I believe that answers to these questions could be the source of help to many, many people who are in emotional pain of one sort or another.  The questions are as follows:

“If one has huge “cares” that occupy their every single waking moment, then wouldn’t even one single moment of “CareFreeNess” be worth its weight in gold?  How could this be accomplished?”  What can you suggest that might achieve this? 

Please share your thoughts.  It could be a lesson that could help others in the future.  Here are my thoughts that I would like to share with you.”

I recently took up skiing after a 25 year absence from the sport.  When I downhill ski, I have to have intense concentration in order not to fall.  It is literally impossible to entertain ANY other thought without losing concentration and going for a tumble.  In that moment, whether or not I want to be, I am care free. 

For my wife, it’s Tai Chi.  In order to accomplish the 108 moves correctly in the proper sequence and in near-perfect execution, you have to concentrate so hard that it is impossible to have any other thought in your head.

“One cannot stop oneself from thinking.  One cannot think two thoughts simultaneously.  One can choose which thought to think.  And whatever it is that we CHOOSE to focus on tends to expand.” 

All hackneyed aphorisms, I know, but they have helped set the course of a reasonably peaceful life.

And in a very practical sense, these axioms have helped me greatly to suppress the fear and uncertainty while caring for my wife who has been ill (not terminally) for the last three months.  With a peaceful countenance, I can best serve her needs.  - eKim

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Reply by NatR
13 Jan 2014, 2:25 AM

Hi eKim,

interesting post! Fascinating subject.  As I read your post I thought how much I soak in the caregiving role, whether it's my client (past experience) or family (also past tense but still involved and aware as strictly grandma). It is very hard not to think about the caregiving, the responsibility, the details, the item by item routine each day, meds, food, personal care, worrying about the future, the sniffles, the well being of your loved one becomes not just a duty/expression of love, but it overwhelms you as a person.

i admit eKim, that I understand everything you said, and agree with it.  I have learned  - and I am a tough one to teach sometimes....that caregiving has wonderful aspects to it.  When you do it to the exclusion of everything else, it does wear down the body and mind.

i don't ski, and am not apt to try that distraction, but so glad it works for you:)

i have have learned that putting actual distance/space between me and the object of my concern (caree) has really helped me to balance my life.  I struggle to allow myself the gift of attention, enjoying life, actually distancing myself from my concerns, that I am better for  it And getting better at it.

thank you for your post eKim, for your gentle reminder to live life too!  
Many readers will learn from you - that the art of caregiving is best when coming from a rested and balanced caregiver....( I am still working on the balance lol) 

we are never too old to learn:) 
have a good night everyone:) and especially eKim.


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Reply by Mark99
15 Jan 2014, 12:05 AM

eKim: Terrific post and speaks greatly to your vision and a vision that perhaps we should all consider when we are trust into caregiving. Your comments and thoughts are the perfect response to the individual who missed the carefree moments. 

Below is a piece I wrote on caregiving which does not perfectly match your thoughts. I agree having some joy gained from being CareFree would be welcomed when we are in the middle of caregiving. I know for me towards the end of Donna's life I would come home from my consulting job and sit on the stoop afraid to head upstairs for what I might find, her pain, fear, sense of loss, etc. I did not fear the amount of work but the toll it took on her. Yet in my mind the joy was caring. It was all about Donna handing me her disease and my managing it and trying to make her feel freedom from it.

I hope this adds to your knowledge.

Are we born caregivers? Do we surrender to caregiving? Where do we learn to be a caregiver? How do we measure caregiving?
Donna was a creative director. Her sense of type, layout, art, design, color, and copy was nothing short of brilliant. Donna was smart, strong, independent, and extraordinarily creative. She fought for every success and did not tolerate fools gladly. In 1979 that is the woman I fell in love with. In 1983 I married her.

January 2009 Donna was diagnosed with Stage IV NSCLC, told on voice mail at work you have six months to live. On February 6 Donna had a craniotomy. Two months later she began whole brain radiation. And in another two months began the first of three rounds of chemo. July 11, 2011 she was admitted for a thoracentesis. July 18 Donna was transferred to hospice. On August 7, 2011 she died.

I closed my business to become her caregiver. Donna put her disease in my hands; she gave it to me to manage and guide her. It was hard to imagine that I was guiding the strongest and smartest person I know. I read somewhere “Courage is not the absence of fear it is the presence of dignity in the face of fear.” She was dying yet she kept her dignity.

All through our marriage I made big family centric Sunday dinners for the two of us because as a child those meals were non-existent for her. That was caregiving sans the disease. During her illness caregiving accelerated and morphed: teaching her to ride a bike, helping with the nausea, vomiting, severe alopecia, hypertrophic osteopathy, preparing pill packs, and communicating with friends about her disease. Rallying friends to visit her in the hospice.

Toward the end I would come home from my part time job and just sit on the stoop afraid to see the disease the pain. I was broken and scared. But I went upstairs because it was my true job, my one love, my only universe, and our life.
Caregiving is an emotional rip tide dragging us out to sea to partake in our drowning but it frames love like nothing else. We give care to the best of our abilities but do it for all intents and purposes alone. Over time caregiving debilitates us physically and emotionally. Can that be changed?
We are not given a caregivers toolbox. Where do caregivers rally to find hope, help, and healing? With family, friends, colleagues? How do we measure if we are doing it well?

Caregivers acquire vast amounts of healthcare knowledge. They are little knowledge machines filled with hope and pain. My wish, this essay will be used to create caregiver toolbox of help. And other caregivers past, present, and future will find a voice. Our caregiving experiences can help others reflect and grow. And survive the crushing aloneness of our life after the death of a loved one.
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Reply by eKIM
17 Jan 2014, 5:29 PM

Hello NatR and Mark99

I have been thinking about each of your postings for days now, trying to come up with an appropriate response.  Mark, your story resonates with me as I am currently the caregiver for my wife who as been ill (not terminally) since October.  I will respond to you, in time.

NatR, Please look at my new posting "Self Care for the Caregiver and the Child Within".  Quite simply, I was thinking of you in the sense that you inspired me to write it.

All my best, my friends.     - eKim


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Reply by NatR
18 Jan 2014, 12:59 AM

Thanks eKim,

read it, appreciated it, and pretty on target I think:)
have a good weekend,
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Reply by eKIM
18 Jan 2014, 4:23 AM

Hi Mark

I read your post with great interest, Mark.  Your marriage seems to have been one between soul mates. You describe Donna as a woman “smart, strong, independent, and extraordinarily creative and who didn’t tolerate fools gladly”.  I could use the same words to describe my wife.

Your words resonate with me.  I believe that our marriage is in the same mold as yours and Donna.   I have been caring for my wife for the last four months.  Although, (and thankfully) she will recover, nonetheless it has caused me great concern and worry. 

When I read of your story, Mark, I am not certain that I would cope as well in your situation.  I admire you for how you persevered in the most challenging and heartrending circumstances.  I also admire you for sharing your story, thereby reaching out to help as you say, “other caregivers past, present, and future”

It is interesting how you reveal both sides of the equation, the fear of seeing Donna succumbing to the cancer, and the joy in caring for her as you tried provide her some freedom from her suffering by making every moment count. 

The word “joy” might confuse some people, but I think I understand.  Your great joy comes from your great love – purely and simply.  I think that your example provides the ideal “Caregiver’s Toolbox” that you speak of.  Your love gave you everything that you needed to complete your role as a caregiver.

You speak of the “crushing aloneness of life after the death of a loved one”.  Mark could you expand on this?  How has it gone and how is it going for you.  Many people feel lost in this situation and would benefit greatly from your example and your story.  Please share.

Your friends here at Virtual Hospice are cheering you on to a wonderful future.

-        eKim

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Reply by Mark99
20 Jan 2014, 5:45 PM

eKim: Rest assured there are days when my coping skills fall by the side of the road. A neuropsych said to me I had adapted well. I beamed that someone I respected thought that. I think in my cynical NYC mind she was just blowing smoke up my butt to effect a response. Which I did, I felt like I had made progress.  
Back to what is left on the side of the road. There are days where there is an overwhelming sense of not loss as much as finding my own path (think of as reading braille) slow and a new skill. And that leads to a bit of frustration. Find one’s own way and not a 30 year shared path. 
A friend said to me that it is more about boredom. I can find things to do but they are part of what I did not what I need to find. Is that clear? My to do is build from the ruins of my loss and not cultivated from a fresh plot of land that has a vista of my past with Donna. But the fact I can in some vague and illiterate way address this is a step forward. And of course it comes from my connections here and other places. And the fact I am somewhat of fighter to find understanding.  
Donna had made for us at anniversary #10 two bands. “Amor Vincit Omnia” love conquers all from a Caravaggio painting. That was who we were conquered by our love. And now abandoned by it in a way.
I think this speaks to your question of expanding on crushing aloneness of life after death. In it’s simplest terms Donna and I never gave up with our work, each other, etc. Now I have to learn not to give up on me. 
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