Monday, June 19, 2006

Caregiving: John Henry Syndrome?

     Maybe I still suffer from a bit of a John Henry Syndrome or still need to compete as a solo home caregiver vs. a professional 24/7 care facility. Who knows? (And why when getting distracted in the American mythology of man vs. machine do I always forget that heroic ol’ John Henry did drop dead in victory? – Must be a guy thing.) 

     It takes machines such as lifts to transfer Patti and multiple people to bathe, change, and dress her. Food preparation requires planning and cutting up in bite size pieces. Eating has to be attended and assisted.

     Machines such as alarms monitor her both in her wheelchair and bed to reduce the chance of falls when cognitive problems and mental confusion might cause her to try something she cannot do.

     Multiple staff enable not only support for the machines and to prepare future activities and meals but simultaneously provide companionship and attention.

     Progression of Multiple Sclerosis can be overpowering. Looking at her 24/7 care facility schedule for today and tomorrow, I can honestly say that even in my most egocentric moment that I could not compete. I’ve learned to “supplement” their best with my best – building something even better.


Breakfast: OJ, pancakes with syrup & margarine

09:45 exercise … 10:00 cookies & juice … 10:15 bowling

Lunch: chicken croquettes, baked potato, carrots, pumpkin mousse 

Nap … 02:15 cake baking … 03:00 room visits

Supper: potato soup w/crackers, hot ham & cheese sand. ice cream

06:45 movie & games

07:30 PM (Patti’s preferred bed time)


Breakfast: OJ, cheese omelet, toast w/margarine

09:45 exercise … 10:00 cookies &juice … 10:15 Bingo

Lunch: open faced hot beef sandwich, mashed potato, cream corn, coconut cream pie

Nap … 02:15 strawberry dessert contest … 3:00 book club

Supper: BBQ riblet sandwich, pickled egg & beets, pears & peaches

07:30 PM (Patti’s preferred bed time)

     Though not printed on her schedule, usually her parents visit with Patti for a couple hours on Monday afternoon and on Tuesdays I usually bring her home or take her on an outing from after her nap until bedtime.

     American mythology has to be heroic man vs. something; after all we are the “Cowboys” of the world! However I am finding that in this 21st Century that “to care …” might not only be safer, but better through teamwork. 


  1. definitely would take team work, Patrick. I type reports of patients suffering from care giver burnout. I think being realistic and knowing your limitations and accepting them and making sure that the time you spend with Patti is quality time instead of quantity of time but exhausting to the both of you is a main goal here. The times you take her on outings are great because you can focus on her and enjoy her not remembering all you are going to have to do after you bring her home for her. Make sense?


  2. using the 24/7 care facilty is a good idea other wise you would be burned out. and that is not a good thing


  3. The more help there is with anything it makes it just slightly easier.  All things are done out of devotion and care but it can be draining too. Rache

  4. My hubby and nutrition are a odd combination.  Patti's menu would be a blessing.  Do they deliver? LOL


Blog Archive