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 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!
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