One of the more interesting symptoms of bulbar onset ALS is excessive/uncontrolled laughter and crying. We used to joke that the bouts of laughing and crying were kind of like the weather. You just need to be a little patient and the storm will pass.
I remember one particular incident where something got Bill laughing and then he couldn't stop. He was standing at the kitchen sink and I watched helplessly as he just "slid" down the cabinets to land in a pool of laughter on the floor. Fortunately, at least on this occasion, he didn't hurt himself! I jumped up and got behind him, to lift him safely as he'd carefully taught all of his caregivers. .JPG)
Only...his legs were not in a cooperative mood. I'd get him about half way to standing and he'd start laughing again, melting any bit of strength in his legs. After 3 attempts, I realized that until the lauughing passed, we didn't have a prayer of getting him vertical again.
So...we managed to get him propped up in a corner, leaning against the cupboards. I grabbed a glass of wine for each of us and pulled up a seat on the floor right beside him. You can get a very interesting perspective on life and your housekeeping skills from this vantage point! The dogs must have thought we'd lost it, but decided to join us as well. What a site! We enjoyed the wine and talked about a lot of different things that night. The laughter ran its course in about 30 minutes and once he was back in control, we were able to get him safely standing again. We were back to "business as usual". I've often joked that my life is "The Truman Show" and this was definitely one of the funnier episodes!
Lessons learned:
1) Life is about falling....Living is about getting back up!2) Laughter is good. Too much laughter is not so good.
3) Take the time to laugh and enjoy the moment...don't fight it - join it!
4) Hire a housekeeper!
I'm a huge fan of the ALSA support groups! They are a lifeline, when you receive an ALS diagnosis and think you are about to snap off the earth. That lifeline extends throughout the progression of the disease and then supports the grieving process.
Each group is slightly different, but the basics are the same. Each regional group meets perio
dically (usually once a month) and is facilitated by a volunteer, generally a licensed social worker. Patients, surviving spouses/partners, caregivers, family members and friends share their journey with ALS. It's a safe place to ask all of the "dumb" questions, find out about current research and clinical trials, share the more pragmatic aspects of dealing with the disease, learn from various experts (communication devices, construction, how to give/receive a sponge bath, etc.) and so much more. For me...it was (and still is) a place to feel normal and with patients in various stages of the disease and different progression, it's much easier to get a feel for the bigger picture.
To find a support group near you, check the National ALSA website.
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
.JPG)
Only...his legs were not in a cooperative mood. I'd get him about half way to standing and he'd start laughing again, melting any bit of strength in his legs. After 3 attempts, I realized that until the lauughing passed, we didn't have a prayer of getting him vertical again.
