Caregivers of ALS patients do so much, often as the sole provider for their loved one. Very often due to the patient not wanting to allow anyone else to care for them. This makes it nearly impossible for the caregiver to get a break from the patient, causing burn out. Extended family need to understand they need to step in and help the patient realize that others will need to be allowed to help. It’s an uncomfortable conversation but very necessary.

Just to give you an idea of what it’s like. Imagine having a pot of water on the stove, but you can’t let it boil over, can’t let it dry up and you can’t turn it off. A life depends on the pot continually boiling. How and when do you rest?

Daily routine:
Wake
Get help out of bed (stretch)
Enjoy a cup of coffee (with a straw)
Watch morning news
Breakfast
Morning meds
Shower (sometimes sponge bath)
Flush feeding tube, clean tube wound
Apply condom catheter
Get dressed
Check social media & emails
Run errands go to appointments (pre-COVID now via telehealth)
Have lunch
Prep for dinner
Wait for kids to get home (pre-COVID)
Direct kids on chores and making dinner
Dinner
Relax (tv)
Prep for bed (take meds, remove catheter)

All of this and I am not able to do any of it on my own. Every step requires someone to help me. I can’t get out of bed on my own, shower, eat, meds, bathroom, drive etc. Every person that functions as a caregiver has their patients needs, their personal needs and any other responsibilities that life brings. Burnout is very real for many caregivers and very dangerous.

Caregivers, unsung heroes and often unknowingly abused by their patient. I say unknowingly because the patient loves them but fears anyone else caring for them. Additionally the caregiver has an extremely difficult time letting anyone stepp in, they feel as though they are abandoning their loved one. It is truly a double edged sword that cuts to the soul. Sometimes it can not be resolved; fear, guilt, but most of all the love, can’t be set aside, not for a moment. Who can argue with this.

TJ&O