Sharing the trial and error learned lessons of a MS spouse caregiver / carer about family, home care, and transition to the care facility era from 23 years of living with Multiple Sclerosis as a family ... a ‘warts and all’ picture of living with MS.
Here in South Central Pennsylvania, small town Halloween parades abound this time of year. Nothing rivaling Macy’s Thanksgiving Day Parade, just small town life celebrating being alive. Fire trucks, high school marching bands, scouts, dance schools, classic cars decorated for Halloween, and costumes.
Calling ahead to Patti’s care facility, multiple aides with lifts kindly got Patti ready, changing and dressing her in outdoor clothing. Arriving with our wheelchair accessible van in addition to zipping Patti up in a winter coat, I pulled on a pair of leggings over Patti’s pants. A walking moving person generates more body heat than those who are wheelchair confined.
Being over 21, we added some Zombie Zinfandel to Patti’s wheelchair back pack.
At first it was like attending the parade with one of the two grumpy old men heckling muppets, as Patti intermittently shouted back expletives at cheering marchers.
The toll of MS progression on the brain may explain some of this.Previously discussed in:
Fortunately once settled down or the Zombie Zin taking affect, Patti got into the festive spirit.
Our favorite part was costumed pets. What were their owners thinking? The piece de resistance was a Labrador costumed as a cow. You would think a faux cow doggie blanket and cow horns would be enough humiliation. Not so, below the dog hung a rubber cow udder. … Slinking along the parade perimeter with its head down in shame, the dog came over to Patti, laid its head on her lap, looked up at her with the saddest dog/cow eyes you have ever seen, and just drooled.
When we stopped laughing we agreed that was one dog that would need some serious therapy after the parade.
Fatigue is somewhat exponential with Multiple Sclerosis. And while the evening may have been short by most standards we packed it with good times, laughter, and a small town celebration of being alive and out.
Above all living with Multiple Sclerosis is about ‘living’.