The Spring 2008 issue of Momentum (the magazine of the National Multiple Sclerosis Society) carries this letter to the editor:
"I am insulted and near tears about Jack's story in "Through Thick & Thin" (Winter 07-08). I have no problem with his taking a trip to see family in Europe, but it sounds like there was no mutual discussion. "I made the tough decision to put Vel in a nursing home" is so demeaning. Jack had all the power. Vel had none. We deserve better than that."
This letter struck a nerve, so I read the original article the letter-writer referenced. In short, Jack, a 68 year-old retiree, is the primary caregiver for his wife, Vel, who is unable to leave her bed. Jack bathes Vel, administers her meds, arranges all of her medical appointments and handles all of the household chores as well. Vel is also dealing with cognitive impairment, which has left Jack feeling lonely and isolated.
If you were to subtract about 20 years, Jack and I have an awful lot in common. And so I feel somewhat entitled to my opinion here. Most of us know that if you line up 10 people with MS, you'll find 10 different sets of symptoms. And because the disease is progressive, there's a wide variance in just how profoundly people are affected by MS. In its earliest stages, people don't even know that they have MS. Should it progress to the point that it has for Vel and my wife Jeanne, it seriously affects every aspect of their lives. What's most clear to me about the letter-writer who is feeling "insulted and near tears" is that they haven't traveled as far down the road of disease progression as Jack's wife has. I pray they never will.
Whether Jack knows it or not, it's vital for him to take that trip to Europe. Caregiver burnout isn't something that we talk about often, but it is a huge issue for people in situations similar to Jack and Vel. If Jack doesn't take care of himself -- if he doesn't stop to do things for Jack -- he runs the risk of burning out and ending up clinically depressed and of no help to his wife. And then we have a household with 2 victims of MS and NO able caregiver! And that's infinitely worse.
Our letter-writer points out that, "Jack had all the power. Vel had none." I'm sure that Jack would trade that arrangement in a heartbeat if he could, but when your loved one is suffering from congnitive impairment, it's dangerous to give them an equal vote in matters -- even if you're desperate for those times when the two of you could make mutual decisions about the future.
We've all heard that "MS affects families." This is another example of how, in making a decision to maintain their own sense of self, caregivers are sometimes forced to make decisions that may seem cold and uncaring toward their loved one. I'd urge folks like our letter-writer to walk a mile in Jack's shoes...but hopefully, she'll never have to. Instead, I'll urge her to refrain from passing judgement on life circumstances that she may not fully understand.
Our letter-writer ends by pleading, "We deserve better..." What Vel deserves most is to have Jack at her side, making her as comfortable as possible for as long as possible. In order for Jack to do that, he can't lose himself in the process.
How is Jeanne doing? Stay strong for her. My mother, who has MS, is not doing too well. She is in pain 24/7. I am just so sad for her and my dad.
Posted by: Patti | February 17, 2008 at 06:17 PM