Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Life on a Continuum

Welcome to Caregiver Friday!

Hope you are recovering from your Thanksgiving feast (if you live in the US).  Now that you’re satiated I thought we could start the holiday season with some perspective.  I like to think that life is inclusive of all and I want to clear up what may have been some misconceptions and set the record straight.

If you’ve read my previous Caregiver Friday articles or other accounts of caregiving it’s easy to get a skewed view of caregiving.  Personally, I’ve tried to express the wide range of caregiving activities, but I’m going to take it out of the shadows and make it the center of today’s conversation.

When someone is labels themselves or is labeled by others as a caregiver the immediate visual we create is that of a person caring for someone bedridden, severely challenged physically, on a host of medications, maybe even needing round-the-clock care.  As humans we seem to fair better with extremes.  We like the black and white and often leave out the gray.  I’m going to explore the gray.

Earlier in my articles I made reference to you, the caregiver, as a wellness partner.  To start this dialogue I invite you to come up with other phrases or descriptive scenarios that represent your life as a caregiver.  This is what I believe, the moment someone in your life is diagnosed with a chronic or life-threatening illness you become a caregiver/wellness partner/(your descriptive phrase).  I know some of you are playing the role of the Doubting Thomas, but I assure you it’s true.

Yes, there are those of you caring for someone who needs 24 hour attention.  There are those of you who are attending to all the activities of daily living for the patient in their lives.  Indeed, we have a huge group of people who are devoting their physical and emotional resources to helping someone in their life get well.  This is only one side of the story.

I can tell you that there are a lot of people who pick up the phone and make regular contact with their loved one so they know they aren’t forgotten or isolated.  There are those of you who read a magazine article and think it would help the patient with their journey to wellness so you send them the article.  There are those of you who have chosen to become educated about the illness, preparing yourselves for what may come down the road, reducing your own fear and in turn reassuring the patient.  There are those of you who are praying for the patient to get well.  Some of you may create regular play dates with the patient so they get out and maintain their social connections.  Others of you may have created phone trees that relay information on the patients health alleviating the family from having to call the world.

Don’t you see…these are all degrees of caregiving.  Caregiving isn’t only the hands-on activities.  It’s about keeping the patient in your consciousness and seeing how your relationship with the patient is best served in their time of need.  Don’t discount your contribution because no one does this alone.  We are social creatures and need the love and support of any and all who are willing to participate.

Here’s a quick example in my own life.  I’ve got family and friends who have faced a host of illnesses.  When I hear about their diagnosis I have offered to be available 24/7, 365 days a year if they need to talk.  I emphasize that this is not an offer I make off-the-cuff.  The offer is sincere, genuine and I don’t take that responsibility lightly.  I make sure the person has all my phone numbers and if they have a cell phone to put the number is their phone.  I don’t make this offer to look good, I make this offer because these people are near and dear to me.  Once I’m aware of their health challenge I look for information, interviews, and resources that may help them.  I’m on call in real life and in my heart.  Am I a caregiver?  Of course I am, even if I’m not in the same town as the person who is ill.

The continuum is vast, encompassing a host of roles and activities.  Just like illness have stages or degrees of challenge, so does caregiving.  Think of where you are on the continuum and honor that role.  Honor the love and compassion you offer.  Honor the actions you take to lessen the burden of another.  Honor the decision you make to stay connected and an active part of the patient’s life.  Honor all your caregiving/wellness partner activities.

I’d love to hear how you honor your role on the caregiving/wellness partner continuum.  Share your story and let’s honor all you do on behalf of those you love!

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One thought on “Life on a Continuum

  1. I like your continuum of caregiving premise. Actually, I think our first thought is of a paid person taking care of a bedridden chronically ill person. Part of this is because, so many family caregivers don’t see themselves as caregivers. They see themselves as moms, dads, siblings, spouses, relatives. Yet, since I finished my first very hard stint as primary caregiver to my aunt who died from cancer, I have come to realize that there is such a range that in the caregiver blog world dog owners consider themselves as caregivers. Right now, a friend of mine has her 86 year old mother visiting. She typically lives in an assisted living center where she has her own apartment but help with meals, meds, personal hygiene, and mobility. In these short two weeks, this friend is a caregiver and while her mom is in CO and she is in CA, when she worries, calls the facility and organizes and manages her mom’s affairs, she is a caregiver. But she just sees herself as watching over her mom as a daughter. Hence, she can’t deal with how she feels dealing with caregiving responsibilities.

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