Friday, January 11, 2013

One of the BEST daily emails I subscribe to is called Peaceful Daily.  Thank you Sandy for your daily wisdom, and especially for this story....a reminder to me of all the "shit" that's been shoveled my way.... it doesn't have to bury me, it can be a way up and out.  How are you shaking off the dirt and stepping into your freedom.  It's always a choice!


One day a farmer's donkey fell down into a well. The animal cried piteously for hours as the farmer tried to figure out what to do. Finally, he decided the animal was old, and the well needed to be covered up anyway; it just wasn't worth it to retrieve the donkey.

He invited all his neighbors to come over and help him. They all grabbed a shovel and began to shovel dirt into the well. At first, the donkey realized what was happening and cried horribly. Then, to everyone's amazement he quieted down. A few shovel loads later, the farmer finally looked down the well. He was astonished at what he saw.

With each shovel of dirt that hit his back, the donkey was doing something amazing. He would shake it off and take a step up. As the farmer's neighbors continued to shovel dirt on top of the animal, he would shake it off and take a step up. Pretty soon, everyone was amazed as the donkey stepped up over the edge of the well and happily trotted off!

MORAL: Life is going to shovel dirt on you, all kinds of dirt. The trick to getting out of the well is to shake it off and take a step up. Each of our troubles is a steppingstone. We can get out of the deepest wells just by not stopping, never giving up! Shake it off and take a step up.

Tuesday, January 8, 2013

Extra Hands

One of the serendipities that happened to us was a group called "Extra Hands for ALS", founded by Jack Orchard, an ALS patient who lost his battle way too young. The premise was to get high school and college students involved in specific volunteer work to help families living with ALS, and then educate the general public about their experience.  Help families, great ALS awareness/advocacy, and a great learning experience for young adults.  Win, win win!

I'm sure that the experience was different for every family involved in the program, and sadly, the group died out not long after Jack died.  Still, we had a wonderful experience with Matt and Julia, our "extra hands" and the nuggets of experience I took away could reasonably be applied today, without a formal program.  I think!  Here are some thoughts on how someone in an "ALS Tribe" could harness the energy and enthusiasm of students and young adults to benefit a patient/family.

Disclaimer....please, please, please, use good judgement and common sense!  If you are the primary caregiver for a patient, DO NOT attempt this.  You have far too many other things to worry about!  Do what makes sense for you, the group of young people involved, and absolutely respect the wishes of the patient and primary caregiver.  The idea here is to help them, not add unnecessary/unwanted stress, even if your intentions are honorable. 

Logistically, you will need
  • a mentor
  • a schedule
  • a willing family with an ALS patient - or any other chronic/catastrophic illness actually!
  • a few willing students
  • tasks that the family feels comfortable delegating or having help with.
The MENTOR is the liaison between the family and the students.  This person should be strong in organizational, scheduling and diplomacy skills.  He/she will be the one to coach both the students and the family, help resolve disputes and to generally supervise the relationship.

The SCHEDULE is coordinated between the family and the student.  Kind of obvious...I know!  We found that once a week, for a couple of hours worked out really well.  It gave me time to organize tasks and think abouut any instructions that might be needed.  And, it gave Matt and Julia the structure they needed to plan for homework and other activities.  Depending on the task(s) and the time of year, your schedule could be different, e.g., more frequent, but less time; less frequent, but more time; more people, regular rotation, etc.  You will know what works for your situation.

The WILLING FAMILY.  If you are a relative or neighbor who takes on the mentor role, one of the biggest challenges will be to work with the patient and primary caregiver.  In general, my experience has been that patients and their families are pretty private and will insist that they are quite able to handle things on their own.  No one wants to be a burden to anyone else.  You may have to get creative in your approach to find the willingness!  It's a delicate balance between handling everything and delegating tasks to relieve the burden of caregiving.  And there's always the competency one does it like I do, or like I like it done.  We humans are funny that way!!

For example, it's pretty easy to suggest allowing a student to walk the dog(s).  Easy to do and not much instruction needed. And...somebody needs to do it!!  However, if the only respite the primary caregiver gets is the 30-45 minutes to take a walk and clear their head, they are probably not going to delegate.  If however, you know that the dog is getting a quick 5 minute "do your business" outing, a longer walk a few times a week will be good for the dog and likely relieve some guilt that the family pet is getting short changed!

Grocery shopping is another easy, but tricky to delegate task.  For Bill and me, shopping was always like a date for us, so it was hard for me to let go.  However, by having Matt and Julia become Bill's arms and legs at the local Safeway, he was able to get a change of scenery, feel like he was still contributing and he often managed to teach the kids something they wouldn't have learned otherwise!  They usually returned from these outings all smiles, and the 45-90 minutes of peace was a great gift for me.  It often meant I got more that a quick rinse off in the shower and I could "doll up" a little.  A pretty good trade off!

One of the most special events that came out of our EH experience was a dinner that the kids prepared for their parents, who hadn't met prior to the program. Under Bill's direction, they planned the menu, shopped for and prepared the food, set the table, provided the entertainment (we watched them cook/interact), and cleaned up the mess. I can't speak for the parents, but I was truly impressed by how well the kids worked together, as equals, to bring fun into our home and provide a brief glimpse into their futures. It was a truly special evening!

WILLING STUDENTS.  We were lucky!  The Extra Hands team recruited and screened the students in the program.  If you're working with family members or neighbors, you're probably familiar with their skills, temperaments and background.  I would NOT recommend organizing strangers, unless you have the background and resources to screen and insure these volunteers.  It's a HUGE undertaking.  Again, please use common sense!!!

One of the components I found appealing about the EH program was the learning opportunity for the students.  At the end of each 6 month segment, or at the end of a volunteer engagement, the students were required to formally document their experience.  Julia and Matt both did formal write-ups for school projects. Julia shared hers with me at the time of Bill's death and it was quite moving. I haven't seen her in 7+ years, but she left a beautiful imprint on my heart and I think of her often.

You might encourage your volunteers to keep a journal or diary of their experiences.  Record the day's events and their thoughts on the patient, the relationship, how they were challenged, what they had to overcome....really anything and everything!  Think about this as you set up your program.

You can also arrange a regular meeting with the family as a check-in session to share these types of insights.  I imagine that it would be a rich and rewarding experience.  It will also help with insights into additional opportunities to provide help.  A quarterly session to consider what is working and what can be improved, can also be rewarding.  If the patient progression is rapid, you might want to meet more frequently. 

The TASKS are limited only by your imagination and the willingness of the family. 
  • If there are younger children, students can help with homework or help out with household chores.
  • Yard work is an easy to manage project as well.  Consider basic mowing, raking, weeding, deadheading, or annual planting. This is also a good, one-time project for a neighborhood group to tackle!!
  • Routine chores like folding laundry, making beds, helping kids clean rooms are tasks that are easily delegated.
  • We had Matt and Julia help prepare meals, take Bill grocery shopping, build a kitchen island (3 week project), shop for plants/potting soil, and I'm sure there are more that I've forgotten!!  As previously mentioned, grocery shopping was a favorite.
A little imagination, some good organization and great communication can go a long way! Consider setting up an Extra Hands "like" program for someone you love and please leave a message on how it goes.  I'd love to hear about your experience!


Saturday, January 5, 2013

Grieving is funny business

Dec 1981.  L-R Back: Dad, Auntie Shirl, Mom
Middle:  Nam & Mac
Front:  Grampy & Grammy
Over the years, I've worked through the loss of people I dearly love; my dad, 25+ years ago; all of my grandparents; a couple of friends from my youth; and Bill, a little over 7 years ago.  I know definitively that I am resliant.  I don't stay sad for too long.  I always bounce back from loss.  

I've also learned over the years that for me, grief has funny, often peculiar, triggers.  The 1st year after I lost my dad was tough, but I was pretty numb, so milestone days (his birthday, Father's Day, Christmas, and the like) passed with little notice.  I was sad, but not grief stricken.  That came in the 2nd year, and in a big way!  My heart had healed just enough to form an emotional scab.  It didn't take much (a song, a piece of paper, a random comment, really anything!) to rip that baby off and expose the tenderness, unleashing a tsunami of tears. There were times when I was sure that I would never stop crying and that my heart would never, ever mend.  And so it has gone with the other losses in my life.  1st year - numb sadness.  2nd year - horrid, unrelenting grief and tears.  3rd & subesquent years - better, a little at a time.
This past summer, I finally completed a search for a primary care physician and had my first appointment with Dr. Alphaeus Wise.  Long story!  As part of the new patient process, I had to list, in one place, my family history.  I'm sure the last time I had to do this was some 30+ years ago, when everyone was still alive!  Good Lord!!!  As I completed the form, I found myself alternating between tears of sadness and joy.  Quite surreal I promise.
It was the first time, in a VERY long time that I found myself alone with my personal history; thinking about my family and how much they meant to me, how much of their history I carry, and what characteristics each one gifted me.  My Grammy Jean was "uber" creative and ran a very organized household.  My Grampy was strong, charismatic and stubborn. My grandma Nam was social and demanded good manners.  My grandpa Mac was "chill", quick with a smile and fiercely loyal.  My dad believed the best in everyone and pushed me to be authentic (walk your talk!) way before 'authentic' found its way into our vocabulary.  These qualities and so many more are who I am.
So the reflection time in the waiting room brought a torrent of inexplicable tears.  Thank goodness for Kleenex pocket packs! I finished the forms and mopped up most of the sadness. So, imagine my surprise as I start crying, yet again, when my new doc's opening line, after introductions, is "'ve been through a quite a bit in your life!"  Not the suave first impression I would have hoped for! 

And so it went; sniffles, tears and laughter as we went thorugh my personal and family history.  Lucky me...Dr. Wise is just that, and found a way to turn the conversation around so I could find my way back to my sunny self. 

I share this in the hope that you will be gentle with yourself as you walk your path of grief.  Don't be surprised by anything, just "be" with it and know that all is in order. 
Grieving is a funny business.  Just when you think you have it all figured out - you don't.  And it's all good!

How about has grief played with you?  Please share.


Wednesday, January 2, 2013

Anniversary #2

June 18th of 2012 marked the 2nd anniversary of my mastectomy surgery.  The day passed by pretty quietly!  It seems so long ago and yet almost like yesterday.  Time is funny!!

Daily, I'm reminded of my surgery as I inspect my surgical scars.  As scars go, I think they're quite beautiful!?  Vivian Ting is truly an artist!  Thanks to my oncologist, Dr. Garrett Smith, I take a 25mg dose of Aromasin daily to block the estrogen my body naturally produces. Daily, I try to get in some exercise to minimize the fat cells on my backside, which, by the way and thank you very much, is my body's main sources of estrogen in my post-menopausal status, !!  The irony!

And daily, I try to end each day with at least 5 things that I am grateful for.  "Vibrant and perfect health" is nearly always at the top of the list.  2 down, 3 to go...happy anniversary to me! 


Tuesday, January 1, 2013

Happy New Year 2013!!

I've been writing in a notebook for about a year, capturing random thoughts around ALS, Bill's life, our adventures with ALS and a little about my post-ALS journey.  One of my resolutions for the new year is to write regularly.  My intent is to have this resolution last longer than most! 

May 2013 support your resolutions and bring all that you hope for!!