July 29, 2017

Preventing Volunteer Burnout

If I live long enough I may have to go to a nursing home.  Using my volunteers wisely makes it more likely they will continue to help me so I can stay in my home.  I use 7 strategies to keep my volunteers from burning out (13 years and counting).

1. Prioritize.  I cut down on the number of requests by identifying what I need versus what I want.  I need someone to get on a ladder to change the batteries in my smoke detectors.  These detectors are connected to my electrical system that maintains an ear-splitting screech when the battery dies.

2. Build trust.  People do not need special training to know when they are being taken advantage of.  When I ask for help
I let my volunteers know I do everything I can before I contact them.  For example, when I asked Peggy to tape a bag shut so I could return a coat in the mail, I explained I had affixed the return label but did not trust my sound hand to tape the end of the bag securely.  People feel good about helping when they know they are really needed.  This strategy builds trust.

3. My husband would groan rule.  I cannot ask people to do things that would make a husband groan.  I cannot ask someone to buy a live tree, transport it, drag it into my house, use an axe to trim the base so the tree fits in the stand, and tighten and loosen the tree stand to reposition the tree until it is straight.  After having live trees my whole life
I bought an artificial one.  John takes it out of the box and snaps the four pieces together.

4. Let them choose WHAT to volunteer for.  I e-mail a request and let people choose things they want to do.  Peggy who loves to sews repaired the sleeve on my raincoat.  Barbara who is a computer technician volunteered to help me set up the Bluetooth system in my new car.  Parts of a task a volunteer hates will not get done.  Letting people choose what to do means I do not risk rejection because I have asked the wrong person.

5. Let them choose WHEN to volunteer.  After they volunteer I ask them when would be a good time for them.  Everyone has busy lives so it is less of a burden when I fit into their schedule.

6. Make a list and stick to it.  Before someone comes I make a list of the things I need done so my volunteer knows when he or she is done.  I stick to the list instead of looking around and saying "there is one more thing I need you to do."  This list also reminds me to get materials my volunteers need.  Before John comes to replace the batteries in my smoke detectors I buy 9-volt batteries.

7. 80% rule.  The 80% rule means some things can be mostly correct rather than perfect.  After my stroke I gave myself permission to not make everything perfect.  For example, I do not make multiple trips around my bed so the bedspread is perfectly straight.  The seam of my bedspread is supposed to be where the edge of the mattress is (see the black line).  I think it is only fair to extend the 80% rule to my volunteers. Nobody wants to hear they did not do it the way I used to do it.

July 22, 2017

Everyone Struggles With Acceptance

Awful circumstances force people to admit that total control is an illusion.  When this happens people get angry, sad, frustrated, etc.  You do not have to have a stroke to struggle with accepting you cannot control everything that happens to you and the people you love.

As a stroke survivor my goal is not to achieve total acceptance.  Even after 13 years there are still new challenges that make me angry or sad.  My goal is to reduce the amount of time I am angry or sad.  Here is what I try to remember when acceptance flies out the window.  Cognitive therapy says the one thing we have control over is our thoughts.  When my emotional response to a situation makes me suffer, I eventually remember that how I interpret what happens to me
is what creates the emotions I feel.

Fortunately, cognitive strategies are not necessary when I have a meaningful goal that gives me a sense of purpose and a list of things to do.  I am happy right now because it is a busy time for me as the Treasurer of my Home Owners Association.  I am happy because my presentation has been accepted for the Illinois Occupational Therapy Association annual convention.  I am busy working on my Power Point presentation.  This also means I can visit my family in Illinois before I go home to New Jersey.  If only acceptance of the life I have was always so easy.

July 13, 2017

Good and Bad News About Hand Recovery

I do not have a high level of hand recovery so I look for studies that do not cherry-pick high functioning stroke survivors to test the efficacy of hand rehab.  Many studies with positive results start with stroke survivors who already have beginning finger and thumb movement.  To decide how excited to get I look at the outcome measures.  They are a good way to decide if research results apply to someone like me.

Franck and his associates studied stroke survivors with no spontaneous hand recovery (1).
Group 1 was taught to keep the affected arm/hand in an "optimal condition" and what to do when discomfort occurred.  Before rehab, the highest score on the Fugl-Meyer test was a 9 out of 66 which can be achieved with arm movements like reaching.  After 6 weeks of rehab for 4.5 hours per week, the highest Fugl-Meyer score was a 20 which can be achieved with NO hand or wrist movement.  After rehab, object manipulation on the Action Research Arm Test (ARAT) improved from 0 to 1 out of 57 for the highest functioning subject.  This is the bad news.

Group 2 had a very small amount of spontaneous hand recovery as seen by ARAT scores for object manipulation that ranged from 1 to 9 out of 57(1). Group 2 was given "high-intensity" therapy for 6 hours per week for 6 weeks to use their hand during functional tasks.  After rehab the highest ARAT score improved from 9 to 42 out of 57.  This dramatic improvement can ONLY be achieved by gaining the ability to pick up objects like a ball.  After rehab, the highest Fugl-Meyer score improved from 25 to 54 out of 66.  This dramatic improvement can ONLY be achieved with hand and wrist movements.  Turning a tiny bit of spontaneous recovery into the ability to manipulate objects is the good news.

1. Franck J, Johannes R, Smeets E, Seelen H. Changes in arm-hand function and arm-hand skill
    performance in patients after stroke during and after rehabilitation. PLOS One. 6/21/2017.

July 6, 2017

Garbage Never Stops Being a Challenge

Bottom-Line: I live alone so paying an assisted living facility $5,000 a month is a very expensive way to get someone to handle my garbage.

As my 1st post on garbage explains, managing garbage after a stroke is a challenge.  Replacing the cracked garbage can I keep in my kitchen has taken a lot of thought.  I cannot buy a garbage can that opens by stepping on a pedal.  This mechanism requires the ability to slowly step on the pedal so the lid will not fling open.  My balance is not good enough to do this.  I do not want a garbage can with a lid that swings opens or springs open when you touch the top of the lid.
They have smaller openings whose edges can get spattered with food.

One step-on model made by Hefty has a lid that hangs over the rim (see arrows in photo on left).  This lets me lift the lid with the back of my hemiplegic wrist (see photo on right).  This leaves my sound hand free to carefully dump the garbage.

There are 3 things I do not like about this new can.
1.  I can lift the lid from only one side. With my old can I could lift the lid from both sides or the front.
2.  The removable garbage can liner is a much tighter fit to get around the rim (see white plastic). This mismatch is ironic because the liner is made for this size can and the garbage can and liner are made by the same manufacturer (Hefty).  3.  I do not like the black color.  My old garbage can was a light green which matched my kitchen decor.