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!

 

Rock on Carla Z!

If you've not discovered and/or taken the time to read the blog Carla Muses, you are seriously missing out.  Just my opinion.  Carla Zilbersmith is sassy, smart, and wicked funny.  Oh...and she just happens to have ALS.  I didn't know her bALS (before ALS) - my loss I assure you - but I suspect the disease has only served to sharpen an already razor-sharp perspective on everything...from the world, politics, dating, self care and quite literally, EVERYTHING in between.  She is a gifted writer, gamely sharing her ALS journey in full, out loud, living & breathing, color.  Late to the game, but yes....I am a fan!!

With that in mind, you should not be surprised to hear that she's written an informative and (it wouldn't be Carla's if it wasn't!) irreverant guide to living (with a capital "L") with ALS instead of waiting around to die from it.  While the Vain Girl's Guide to Living with ALS is clearly targeted to women living with the disease, never fear.  With and open heart and an open mind, there is something for everyone.  There are quite a few take-aways for me!!!

Once your laugh muscles are warmed up, the next step is to check out the film "Leave Them Laughing - a Musical Comedy about Dying".  Treat yourself to a full, "Carlaful" experience.

Enjoy!!

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.

SHARE THE CARE: Offering help

Some time ago, I wrote a post entitled Ask for help / receive offers for help graciously. In it I wrote, "We are just not programmed to receive help. How often is it beat into our heads (from childhood!), “it is better to give than to receive”? Well, the truth is, somebody forgot to close the loop on this little axiom. If nobody receives, it makes it damn HARD to give!"

I had a conversation about a week ago with someone who agreed with my sentiment but shared a slightly different perspective. She said "I would love to have some help! I want help, I know I need help, but with everything I'm trying to cope with, I can't always articulate what I need. The truth for me is that when you ask me "what can I do to help you?", the offer is so vague, my brain goes into overload and I just can't answer!" Hmmmmm. We finished our conversation and went our separate ways.

A bit later in the day, I walked into a card store and was immediately greeted with "May I help you?", and the "how can I help" conversation came rushing back...in a flood. I've had extensive sales training over the years, and the #1 taboo in sales is to greet a customer with "may I help you?" It's too overwhelming and immediately invites the customer to put up his/her defenses. (All together now..."no thanks, I'm just looking!") In that instant, I understood what my companion was trying to say about offers of help.

The same way I've taught my team members over the years to greet customers with ANYTHING but "that sentence" (I've actually levied fines to retrain my forgetful team members!!!), I thought it would be helpful to share some specific alternatives to "How can I help?". This is a "starter set" to consider. Just remember the goal....narrow down the options for the patient/caregiver - so that you are much more likely to get a positive, definitive answer and everyone wins!

The photos in this post are of just a few of the many angels who inspired this post and came to my rescue....more than once!

• I make a mean tuna cassarole and my family raves about my spaghetti. Which does your family prefer? (Obviously, insert your personal specialties!!!)


• I am free to run the "kid shuttle" on Monday or Thursday. Which would be better for you?


• I have an hour on Saturday to pull weeds or mow the lawn. Which chore would you like to delegate?


• I can help you with household chores for about an hour - you know change beds, fold laundry, etc. How about Tuesday evening around 7 or Wednesday after 3?


• I can take the kids Friday or Saturday night for a sleepover, which works best for you?

You get the idea! PLEASE add to this list by posting your suggestions! Another alternative: Don't ask - just DO!

Most of these suggestions require little or no planning and best of all, you can do them whenever YOU have the time, energy and inclination! Please keep your friend's temperment and your relationship in mind!! A word of caution...in the interest of fair disclosure: following any of these next suggestions is potentially risky! However, I am reasonably certain that even the most die-hard indivualists would appreciate it if you were to:

• Take your kids, a couple of rakes and some big trash bags and just rake the leaves in your friend's yard. or...Trim the hedges. or....Mow the lawn. or...Deadhead/fertilize the roses. Other???


• Shovel the driveway


• Safely, with a buddy, clear the gutters. or...Wash the outside windows. or...Wash a car left in the driveway.

Your imagination is the only limit to builiding your Mitzvah list. Let me know how it goes!

THE PROJECT GIFT BOX - Organizing yourself and friends to help with caregiving.

Asking for help is a very difficult task. I'm not certain why, but I suspect it is because we, as Americans, are such rugged individualists....we just don't need any help. As mentioned in previous postings, I am a true believer that it takes a village to care for an ALS patient. I was discussing this with some friends recently and came up with a possible solution - a way to turn the "gift" of time and service into something that we can intellectually accept with grace. When you think about it, if someone you cared about took the time to wrap up a small gift and gave it to you, you wouldn't turn it down. You would thank them immediately, unwrap it, oohh and aahh, and then probably send a thank you note. Here are suggestions for creating your own "Project Gift Box".

• Find a box with a lid


• Go all out and decorate it to your hearts desire! Wrap the box and the lid separately.


• Find 4 - 5 different colors of paper - Medium sized PostIt squares are the perfect size!


• Colors correspond the the amount of time which can be donated for any given offer (i.e. 15 - 30 min., 30 - 60 min., 1 -2 hours, 3+ hours)
  


• Tape one slip of each color with the time allotment to the inside of the lid (to help you remember!)
  


• Think about the projects around your household that can be shared/delegated (see suggestions below)


• Jot each project onto a colored slip of paper and add it to the decorated box.


• When someone asks "What can I do to help you?", ask them how much time they have to "gift you" and then ask them to pull out a colored slip from your gift box.

There are chores that only you can do. But the list of chores to be done (and it doesn't really matter by whom!) is endless and limited only by your imagination and willingness to let your friends and family help you. Trust me...friends will truly be grateful for the opportunity to help with your caregiving responsibilities. Here are some distinct project ideas to get you started. Share your ideas and successes by responding to this post!

• change the bed linens


• fold clean laundry


• assemble a grocery list (look in the cupboards and learn the specific brands you prefer)


• go grocery shopping


• put away groceries


• pull weeds


• read to a patient or a restless toddler


• help with homework


• walk the dog(s)


• clean the catbox, hamster cage, rabbit hutch, bird cage, goldfish bowl, etc.


• empty the diswasher


• clean the toilet(s)


• mow the lawn


• take the car to the carwash


• follow you to the dealership/repair shop for auto servicing


• drop off a bank deposit


• plant flowers/veggies


• clean the pool


• run the vacuumn


• rake leaves


• clean gutters


• carpool kids to school, soccer, dance lessons, etc.


• collect the trash/recycling


• pick up a prescription, dry cleaning


• return library books, video rentals


• shovel snow


• hose off window screens

Ask for help / receive offers for help graciously.

We are not programmed to receive help. How often is it beat into our heads (from childhood!), “it is better to give than to receive”? Well, the truth is, somebody forgot to close the loop on this little axiom. If nobody receives, it makes it damn HARD to give!

Now is the time to turn to friends and family – you have to let them in - to share the load. If you can figure this out, the road will be a lot less bumpy and considerably more meaningful for you and your circle of loved ones.

I personally believe it is particularly critical while your PALS is still mobile to get people to take him/her out, for a period of time so that your PALS is safe and entertained. They get a change of scenery, you get some time to yourself, even if it's to take care of chores and (bonus!) you have something different to talk about besides ALS! This will get harder as your PALS loses mobility, but it's not impossible. You may have to do some negotiating as the disease advances. It helps to have friends who have been caregivers!

I always had a backpack stocked (think diaper bag!) and several friends learned how to feed and water him so that he could remain independent and interesting. Bill was really great about going out for up to 3 hours, which was about the maximum capacity of his bladder. He didn't want anyone to help him transfer in the bathroom but me. Again...I totally realize now how fortunate I was that he was willing to let people be that intimate with him!

Here are some less intimate options for when someone says “I want to help, what can I do?”

• Ask them to cook a meal and make enough for left-overs.
• Have them talk to you as they unload your dishwasher so that you can sit still for 5 minutes and watch them do it.
• Have them arrange for a neighborhood rotation to rake leaves, mow the lawn, trim the roses, etc. Have your PALS supervise the effort.
• Help you (organize a weekly blitz to) change the beds, vacuum, mop, clean the toilets, etc.
• Hand them a shopping list (be specific about brands you prefer!) and your debit card and ask them to go to the grocery store. Even better, take your PALS with them so he/she can help with brand decisions! If your PALS is not in a motorized wheelchair, they can use the motorized carts in the store. They don't have to hurry!!!! Use the time to get a shower, meditate or read.
• Sit still in a chair, on your hands if necessary, and coach them on where things go in the pantry when they get back with the groceries.
  Hand them your bag of dry cleaning and ask them to take care of it the next time they run their errands.
• Ask them to pick up a box of haircolor and a bottle of wine. Set your PALS up with a 90 minute movie and ask them to help you color your hair!
• If you go to the grocery store, and the courtesy clerk asks "would you like help", the only answer is "yes please"!!!!
• Ask the kids in the neighborhood to help decorate your porch for the holidays. It may not be perfect, but it will get done, they'll have a ball and who knows...you might like it better. I often had Bill "supervise" these projects. The kids loved it!
• Consider doing you holiday shopping online and then having friends help you wrap everything. Again...send your PALS shopping with friends and a list.
  

There are millions of little opportunities! Be creative and allow your friends the ultimate gift of helping you. You aren't a burden! Please consider this...you would be sorely offended if you offered help and they turned you down, if the circumstances were reversed.

Family...a new definition

Family isn’t just about biology. Family and friends come in all sizes, shapes, colors, skill sets, dispositions, geographical locations, and more. To list my “family”, would require a very long list! I thank my lucky stars for all of the everyday angels God has sent my way….you all know who you are!!! Please know that you have my humblest thanks for all that you have done for Bill and me, and continue to do for many others…every day. I would like to publicy thank the ALS clinic and the Memory & Aging teams at UCSF for their friendship, skill and their (collective!) outstanding bedside manner. The Kaiser Permanente angels include Will North, David Fields, Carolyn & Fran, Danijela, Jolene, Anita and Emmy.

It pays to get your legal/financial house in order and the peace of mind is worth every dime you invest. Thank you Steven & Joelle, and Henry & Jean.

Some days it’s an effort to get out of bed, put one foot in front of the other and just get on with the business of “getting on”. Terri, Janey, Phil, Chris, Teri, Tom, Patti, Sherri, Diane, Howard, Flo, Michelle, Tom, Nancy, Matt, and Julia are just a few of the angels who daily came to lift us up and carry us through the day.

If you’re lucky, you have friends who just seem to know what you need, when you need it and aren’t afraid to step in when it’s not so easy to do just that. I have been truly blessed by your friendship, humor and grace.