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 dance....no 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!

 

Truly Living, an essay by Julia Miller

Angels are delivered to us every day. Sometimes we know...and sometimes we don't. We were fortunate to receive help from EXTRA HANDS FOR ALS, founded by ALS patient Jack Orchard and his wife. Matt Nevitt and Julia Miller were the students who came every Monday for about 6 months to be with Bill and me, to help out and be our "extra hands". I will always be grateful to, and hold a special place in my heart, for both of these sefless young adults. Today, I share the essay that Julia wrote about her experience. Enjoy!

Truly Living

When I first signed up for Extra Hands for ALS, I thought it would be a nice way to spend free time, volunteering with real people and trying to make the world just a little better. I had no idea that the day I walked into 1847 Linwood Drive would forever change me. Extra Hands for ALS is a program through which patients with Amyotrophic Lateral Sclerosis (“ALS”) are connected with volunteers who help them accomplish things they no longer have the ability to do on their own. ALS (commonly known as “Lou Gehrig’s Disease”) is a heartbreaking and debilitating disease that slowly deteriorates a person’s motor functions yet leaves the brain untouched, in effect holding them prisoner in their degenerating body until they die. ALS is a terrible disease, both for those who have it and for those who must watch their loved one slowly die in front of them. Yet to die from ALS is relatively easy compared to living with it. It requires an amazing strength and bravery, and an acceptance that our time alive on Earth is not guaranteed. Although he knew that this disease was terrible in every way, my patient Bill Lichtig lived with it with an uncanny dignity and was able to indirectly use the disease to teach me amazing life lessons. And he has changed me forever.

The day I met him, Bill wore glasses, had a cane resting against his knee and two golden retrievers lying at his feet. He stood up to shake my hand in greeting although I could see it pained him to do so. This was my first glimpse of what I learned was his steadfast resolve to live despite his disease, an amazing bravery I hope to one day see in myself. Bill has left me, but he leaves me with resonating lessons about three things: love, life and laughter.

Bill was a lover, of people, of life, and of laughter. You cannot just teach someone about love, but you can show them. Bill showed me that you must let people love you, even when you do not want to. Bill’s wife, Kathie, was his primary caregiver. This meant that she was in charge of feeding him, among other things. Seeing Kathie fearlessly feed Bill through his feeding tube truly showed me love. She chatted with him about unimportant things while she did it, I guess in an attempt to show him it was not a big deal to her. Yet through that action I could feel the outpouring of true, deep love they felt for each other. Kathie could have had a nurse take care of Bill, but she did not; Bill could have told her he wanted a nurse so as to not inconvenience her, but he did not. Bill allowed Kathie to care for him because he loved her, and Kathie never stopped nursing Bill because she loves him. There is a song by a band I like, Death Cab for Cutie, who sings a song with the lyric: “Love is watching someone die.” When I first heard those words I instantly thought of Bill and Kathie, who have taught me more about love than I may ever learn the rest of my life.
Besides love, Bill also taught me about life. One day, before he could no longer comfortably chew them, Bill was enjoying his daily snack of Oreo cookies and he said to me: “Cookies fix anything.” While unfortunately cookies could not physically cure Bill, they symbolized a deeper meaning. Cookies were all the small things Bill did to enrich the last part of his life. Sitting outside in the sun, petting the dogs, even sniffing the air in the kitchen as I attempted yet another meal under his instruction. Bill showed me that focusing on small, positive things can help you ignore large negative ones—or at least keep them from ruining your day.

One day Bill, who liked to speed in his motorized chair, was enjoying wine through his feeding tube. He told me if a cop pulled him over he was fine because he could truthfully say: “Officer, no alcohol has touched my lips.” I know his mischievous humor kept him alive when he no longer had the physical strength. This alone proved to me the importance of laughter, and he made me laugh constantly. Once he could no longer speak himself, he used a computerized voice, although typing was tedious and frustrating for him. He maintained his dignity, even when others were not so understanding. For example, he was sometimes mistaken for a prank caller when using the telephone, but his strength to even recount these stories to me displayed an undaunted will to fight his disease. A coward would be embarrassed by such an event, but not Bill—by reliving the experience he was showing everyone he was still here, and still strong.

The most important lesson I learned from Bill came when he told me: “Yes, this isn’t an easy disease to live with. But there’s nothing I can do about it. I can either spend my days crying or laughing—and I choose to laugh.” This statement concisely sums up what I learned from Bill. I learned not to let small things, like forgetting an item on our grocery list or messing up our projects, ruin my day. I learned to see a small mistake as just that: a small bump in the road rather than the end of the world, as I used to do before I met Bill. He taught me that so much of life is mistakes. Who we are is based on how we deal with those mistakes and how we react in the life’s obstacles. We can cry or we can laugh, and it is always better to laugh.

Bill also taught me how to die. August 10, 2005.

Kids and ALS

I think sometimes we work too hard to shield children from the difficult circumstances of life. I don't personally think it's right to frighten children by initiating conversations they aren't curious about, or overwhelming them with so much information they are in tears of confusion. But I think we do them a disservice when we hide or whitewash the natural order of life.

During Bill's illness, the children in our neighborhood ranged in age from 3 to 18 with the majority falling between 8 and 13. Initially I was pretty nervous about answering the question "what's wrong with Mr. Bill?" Bill, God bless him, set me straight. "It's just like talking to adults, only just a little different. You need to listen more carefully, answer only the question they ask and use simple words". OK....great! As usual, he was right! Here's an example:

• Q: Why is Mr. Bill in a wheelchair? A: His legs don't work so well anymore.


• Q: Why? A: Because his brain can't talk to his legs to make them move.


• Q: Does it hurt? A: Nope!


• Q: Will he get better/walk again? A: No


• Oh.


• Q: Can I look at the laptop? A: Sure!


• Q: What's he saying? A: Why don't you ask him. He can hear/understand you and he'll answer any question you ask!


• OK!

Bill's laptop or "talkie" as we came to call it, was an endless source of fascination and information for the neighbor kids and their parents. In my experience, kids understand a lot more than we give them credit for and are very quick to adapt to changing circumstances, generally without intervention from adults! The kids naturally adjusted to the wheelchair and to Bill's funny, computer generated voice. It was the most natural thing in the world after we explained the basics. I will always be grateful to whatisals.com for the kid-friendly explanation posted on their website.

The kids figured out a rotating schedule among themselves to help me walk the dogs. Sometimes they would invite Bill to "walk" with them so they could ask their questions, knowing that Bill would answer honestly. I would often hear laughter, because that was his style and because a computerized voice is naturally funny!

Sometimes we would lose track of time and we'd have parents knocking on our door to collect their kids for the evening. In the early days, they would be aghast at the questions asked (you know how direct children can be!) and try to "shush" the kids. Bill would quickly re-assure the children that he would answer the question, inform the parents that there were no issues and then set about to patiently and carefully answer all of their questions. He always answered honestly and in an age-appropriate manner. It was truly a wonder to watch.

One of my fondest memories is the day he actually died. It had been a full day and I had dinner with friends in Orinda. I came home and parked the van in the driveway. Most of the kids were out playing, enjoying the freedom of late night play that only comes in August when there is no school. They all ran to the driveway and when the ramp didn't drop, the older kids instinctively knew he was gone. Zack...a lively and curious 6 year old asked the question on everyone's lips...
Z: "Hey....where's Mr. Bill?"
K: "Well Zack, Mr. Bill is in heaven." (I knew I had a choice to tell the truth or paint a story. I chose the truth and will always be glad I did.)
Z: "Heaven....all dogs go to heaven" (long pause as he looked around at the older kids starting to tear up) "That was a really sad movie"
K: "Zack...you are so right!"
Other kids: "Mrs. L., can we come in?"
K: "Sure, but you need to tell your folks where you are"

And that was that. About 10 minutes later, many of the neighbors came back to the house with their children to pay their respects and ease into their grief by reminiscing. As Zack's older sister Michaela came into the house, she spotted Bill's empty wheelchair, and without any hesitation, went to the chair and said her goodbyes to Bill by gently kissing the small bunch of silk daffodils anchored to the back. I'm sure she had no idea I was an observer to this fleeting, selfless, authentic gesture, but I will always remember her gentle manner and my gut reaction of "kids "get it" if we just give them a chance!"