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Barbara Scoville, LCSW

~ Pioneers of Peace™

Barbara Scoville, LCSW

Tag Archives: Caregiver Support

A Caregiver’s Manifesto

19 Saturday Oct 2013

Posted by Barbara Scoville, LCSW in Caregiver's Storyboard, Emotion School, Life Mastery Skills, Mindfulness, Pioneers of Peace, Resilience, The Optimism Corner, The Power to Do, Wellness

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Caregiver, Caregiver Burnout, Caregiver Manifesto, Caregiver Support, Caregiver's Storyboard, Caregiving, Compassion, Courage, Dementia, health, Mental health, Role reversal, Senior Health

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A Caregiver’s Manifesto

 1.  From here forward I will identify “Caregiving” as a clearly defined new role, and not as role reversal or any other negative associations I may have made with it in the past.

 2.    Caregiving is only one of the many roles I serve. I do not forget about my other roles such as: spouse, parent, friend, and employee.

3.    I recognize that Caregiving is usually not convenient and therefore creates many conflicting emotions, ALL OF WHICH ARE NORMAL.

 4.    I clear my mind from all preconceived thoughts about Caregiving and accept each day for what it brings. This not only protects me from disappointment and discouragement, but opens me up to receive miracles.

 5.    I radically accept the physical and mental limitations of the person I am caring for. This allows me to direct much needed energy into productive thought and activity, rather then allowing my precious energy to be lost in a fantasy of how things “should be.”

 6.    I understand that to care for others I must first care for myself. It is a requirement for the physical, emotional, and spiritual energy needed to fulfill the role.

 7.    I understand that I alone am responsible for making time to take care of my needs.  If I wait for the benevolence of others, I risk not getting my needs met, as well as feeling negative emotions such as hurt and resentment.

 8.    I accept help when it is offered even if my loved one opposes such help or I believe I can do it better.

 9.    Courage and Compassion are the attributes I am building.

 10.  I understand that pre-existing problems do not go away and if I need emotional help I obtain it.

 11.  I proactively look for tender mercies and miracles and capture them in writing to keep me balanced and reminded that I am not a victim.

 12.  I do not feel guilty when on vacation, spending time with friends, pursuing hobbies, or meeting my financial needs through working.

 13.  While I do what I can to ease my loved one’s burden, I know we are all responsible for our own happiness.

 14.  I respect my loved one’s ability to make their own choices whenever possible and make sure that I do not overstep by bounds when making decisions.

 15.  If my loved one is incapable of making choices, I base decisions on past conversations and what I believe they would want. In the absence of any such knowledge, I make decisions based on what I believe to be right along with the advice of other family members and professionals. When there is disagreement, the primary caregiver makes the decision.

 16.  I know my loved one is a multi-dimensional person with vast life experience, wisdom, interests, and strengths and weaknesses… just like me.

 17.  I am sensitive to my loved one’s need for privacy and do my best to preserve their dignity.

 18.  I do not blame my loved one for my feelings of loss and sadness. I own, validate, and take responsibility for my own emotions. I do not stuff my feelings, nor do I let them overpower me.

  19.  It’s okay to laugh.

 20.  I make mistakes and that’s okay.

A Caregiver’s Manifesto pdf

 This document is copyrighted. You have my permission to copy the pdf and share it with others for non-commercial purposes.

 

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Related articles
  • Caregiver’s Story Board: A New Facebook Page (barbarascovillelcsw.com)
  • True Confessions of a Former Caregiver…and a darn good cookie recipe (barbarascovillelcsw.com)

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Caregiver’s Story Board: A New Facebook Page

15 Sunday Sep 2013

Posted by Barbara Scoville, LCSW in Caregiver's Storyboard, Pioneers of Peace

≈ 5 Comments

Tags

AARP, Aging, aging disability, Aging Parents, Caregiver, Caregiver Support, Caregiver's Storyboard, Facebook, hard stuff, national alliance for caregiving, Pioneer of Peace

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Hello All,

After publishing True Confessions of A Former Caregiver: And a Darn Good Cookie Recipe two weeks ago, I have continued to receive an overwhelming response that has been heart warming. It was a very personal story and though it was easy to write, it was hard to share.

Many came out of the woodwork to say how meaningful my words were to them, and talked about similar feelings, adding their own experiences equally as poignant.

As I listened to their stories, one thing became clear. It is cathartic to talk about the hard stuff. Too many people suffer and think they are alone in their experiences. Talking allows the demons to be released, and when they are released they have the potential of transforming into angels.

We all do our best in difficult circumstances but we all have limitations. The problems come when we have unrealistic expectations of what or how we think things “should be.”

Aging is as normal as being a baby, yet it is shrouded in taboo. Why is that? Perhaps it’s because on so many levels,we associate endings with loss in addition to not being mentally prepared for role reversals. Maybe instead of thinking in terms of role reversal, we need to think of role evolvement. Reversal conjures up judgment and fear because it doesn’t sound like we are progressing, but rather regressing.

Caregiving is not relegated to just the aging. Disability is no respecter of age.

According to The National Alliance of Caregivers

  • 65.7 million caregivers make up 29% of the U.S. adult population providing care to someone who is ill, disabled or aged.
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC.] – Updated: November 2012

There are plenty of studies about the needs of the disabled and the dying, but what about the needs and psychology of the caregivers, and those left behind?

Rarely is the caregiver asked how they are doing, while the inquiries about those they care for go on and on. We are all in this together, yet caregivers often exist in the shadows.

To be fair, studies are emerging; but not fast enough.

Caregivers are a demographic much like parents, but different because of a lack of credibility. Don’t get me wrong; there is plenty of moral credibility, but to this point the role is not backed up with authority, or enough common practical knowledge. Decision making becomes so ambiguous. New parents, who complain children do not come with user manuals, had better buckle their seat belts when it comes time for caregiving, because they have no idea of what’s coming later in their lives.

It is time to normalize the role of caregiving and start preparing people for this stage of development. The best place to start is simply by talking about it; all of it, the good, the bad, and the ugly. As with all difficult things, emotional poison lies within the shadows.

The following are some Facebook Pages I have found that do a pretty good job of telling it like it is:

Caregiving Inspirations by Joy

The Caregiver Space

Caregiver Stress 

Caregiver 

Caregiving Manifesto

All of these pages make a valuable contribution. I wish I would’ve known about them when I was in the midst of my caregiving experience.

This week, I have launched my own contribution, by starting a Facebook Page called Caregiver’s Story Board, which will be a safe place for caregivers to share their stories.

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In Muir Woods National Park, there is a designated space along the side walk for free speech. When we last visited, we overheard an exchange between a little boy and his mother. The little boy said, “Mom, can I say the ‘F’ word here?” Yanking his arm and pulling him away, his mother emphatically said, “NO!!!”

Here are the ground rules for Caregiver’s Story Board:

1. This is a family friendly page. Do not use any vulgar language.

2. This is not a therapy page. While it is a safe place to share your story, it is not a place to ask for, or expect therapeutic help.

3. If writing is not your thing, you can post videos with your story.

4. All posts are subject to my approval. If I believe a post is contrary to the mission of the page, I will delete it.

5. Posts should be in the spirit of genuine disclosure, for the purpose of: bringing caregiving out of the shadows, telling your story, normalizing the caregiver role, and education for those who are interested in or preparing to fulfill the caregiver role.

6. By posting your story, you are giving permission for it to appear on Caregiver’s Storyboard, Barbara Scoville, LCSW Blog, and other social media sites.

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If this space is utilized, I believe it can make an important contribution to the understanding, acceptance, and normalization of caregiving.

I invite you to be a Pioneer of Peace and share your stories. Pass the word along that Caregiver’s Storyboard is a “safe place to land”during both the good times and the bad.

Just get on Facebook and search for Caregiver’s Storyboard. If you would PLEASE “Like” the page I would really appreciate it 🙂

That’s all for this week.

Until next time take care, and may you find your cup half full 🙂

Barbara (The Blog Whisperer)

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Related articles
  • Help for the caregiver (thehindu.com)
  • Caregiving; One Family’s Story (cltv.com)
  • 5 Things I’ve Learned as a Caregiver (aarp.org)

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