One of the many serendipities that happened to us as we worked to stay in front of all of the changes ALS dealt us, was a group
called "Extra Hands for ALS". The organization was 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 a strong leader in a group of friends/family members dealing with a catastrophic situation could harness the energy and enthusiasm of students and young adults to benefit a patient/family.
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 a strong leader in a group of friends/family members dealing with a catastrophic situation could harness the energy and enthusiasm of students and young adults to benefit a patient/family.
A few thoughts to consider...
- Please, please, please, use good judgment and common sense! Start slow and build momentum as you gain experience.
- 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 your particular situation and the group of young people involved
- The group must 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.
Here are a few thoughts to get started. 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. This job goes to the person in your tribe with the best organizational, scheduling, diplomacy and communication skills. Bonus points if they also have enthusiasm, social media skills, and work well with young people!
The SCHEDULE is coordinated between the family and the student(s). 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 about 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, or learn 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 (and joys!) 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 than a quick rinse off in the shower and I could "doll up" a little. A pretty good trade off!
One of the most memorable 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! This is a very fond memory almost 10 years later!!
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, and 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 since Bill's passing, but she left a beautiful imprint on my heart and I think of her often.
Here are some opportunities for sharing lessons learned as you develop your program:
The SCHEDULE is coordinated between the family and the student(s). 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 about 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, or learn 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 (and joys!) 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 than a quick rinse off in the shower and I could "doll up" a little. A pretty good trade off!
One of the most memorable 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! This is a very fond memory almost 10 years later!!
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, and 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 since Bill's passing, but she left a beautiful imprint on my heart and I think of her often.
Here are some opportunities for sharing lessons learned as you develop your program:
- 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!
- 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 for everyone involved. It can also help with insights into additional opportunities to provide help.
- A quarterly session with volunteers to consider what is working as well as 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.
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