Caregiver Advocacy: Part 3, The Roundup

Caregiving a job that is made up of hundreds of small tasks.  Each task in itself seems perfectly doable. But taken together and over time, caregiving can be isolating and soul destroying.

It doesn’t have to be that way.  The beginning of putting a broken caregiver’s life back together is the realisation that no one person alone can take care of all the needs of another.  A wise person said, “It takes a village”, and they were right.

That’s why building a ‘team’ to help advocate for care support is so important.  It is difficult to ask for help and there are many reasons why that is so.  Not least among them is our guilt over a deeply embedded belief that we should be able to care for our loved one alone.  That’s where the advocacy team of friends, family and support professionals comes in very handy.  They can find out where help might be available and ask for you.

In my last post, I described the process of strategic inquiry into agencies, community centers, churches, or anywhere else you might find care assistance that would be helpful in easing the burden of care.  Seeking out those Executive Directors and asking their advice on how their organisation might be helpful to your family is the first step in community relationship-building.  Once you understand the business priorities of the organisation that you are advocating, you can begin to think about how to match those with your needs.  You will be looking to ask for help that helpful to you, but also represents a ‘win’ for everyone.

In many secondary schools, students are not allowed to graduate until they have completed a designated number of volunteer service hours.  Dog walking, snow shovelling and even grocery delivery are a few of the tasks that young people could perform to assist a neighborhood family in need of a helping hand.  A call or visit to the guidance counselor can be the first step in making a new friend who can help out around the house.

An online care coordination tool such as Tyze can be a lifesaver when friends and family have come together to form a little ‘Swat team’ to help advocate for home support.  I’ve written extensively about how we use Tyze to coordinate Nick’s complex care, but here, I’m talking about using a tool such as Tyze to coordinate the advocacy effort.  If a sibling offers to meet with the CEO of the local community center, but cannot attend the follow-up meeting, someone else can jump in.  Everyone has access to the same records, critical background information and appointments agenda because it’s all stored in the same secure website.  An email group, google calendar, or private facebook page are other options to coordinate the team.

When a stressful caregiving situation tips over into crisis, it’s difficult to pick apart specific actions that will be helpful.  Everyone involved feels overwhelmed and immobilised by exhaustion and worry.  But, there is hope.  The tools that I developed in the workshop “How to Know What You Want and Get What You Need” come directly from my own experience of feeling overwhelmed, finally getting help and then reflecting on what worked and what didn’t.

Today, I had the pleasure of having a live radio chat with Joni Aldrich on her radio show “Caregiver SOS”.  At the end of our interview, Joni asked me this: If there was one thing that you would tell caregivers, what would it be?  My answer:  You can’t do it alone.  It takes a village to give care, and that’s a good thing for all concerned, because caregivers want to look after their loved one.  And extended family, friends and neighbors want to help.  Everyone just needs to be shown how they can all work together.

Joni Aldrich’s interview with me will be re-broadcast this Saturday, March 30, 4-5pm EST.  Tune in HERE!

*This group (not individual) workshop, “How to Know What You Want and Get What You Need” is available through the Advocacy School.   The workshop may be purchased by a charity or support group for caregivers.  The workshop is also available in the form of a three-part webinar.  If you would like further information, use the contact link on the Advocacy School website.   We are also developing a workshop for best practice in effective patient advocacy.