More often than you might imagine, the disabled have episodes in their personal history that make it difficult to be totally honest and open about what they need from those who support them. Early in this relationship, caregivers must take the input we get at face value until we learn how to get to the truth when we need it.
I knew a week after I met Lisa that she had been subjected to unimaginable abuse, and that her experiences would impact her ability to trust me enough to be honest with me. Early on, I just forgave her for not being forthcoming as I worked to earn her trust. You'd think I'd have succeeded after four years, but you'd be wrong.
Lisa's grandmother was postponing her own death until Lisa was "married off", and after four years I started feeling the pressure. But I knew Lisa well enough to know that her first response to my first marriage proposal would be "no." She needed to see how I responded to the word, since it had been her experience that beatings sometimes followed the act of telling a man "no." If I was that kind of guy, she needed to know before we were...
Two of my three brothers have a broad knowlege of carpentry. My oldest brother was a journeyman carpenter for twenty years, and my younger brother taught himself to swing a hammer while working on his own fixer-upper homes. The thing that most amazed me was the difference in their craftsmanship.
My older brother, Jeff, took pride in his work and did it very well indeed, the way he was trained by a master carpenter many years ago. But my younger brother Tim taught himself while working full time in health care. A poor carpenter is often called a "wood butcher," but Tim went the other way. You could almost call him a "wood surgeon."
Jeff was always amazed at Tim's slow, painstaking pace, getting each board to fit perfectly where it went, so snug in its place that nailing it there was little more than redundant insurance. Jeff said you couldn't make a living working that slowly. Tim didn't brag, but he took justifiable pride in doing the job perfectly.
I remember the day Jeff looked at a window Tim was framing into a wall of his house and found, of all things, a narrow, wedge-shaped shim under one corner....
Lisa was born by emergency C-section after her mother, Lil, fell off a horse while pregnant. That's a long story about poor decision making and conflict resolution, which maybe we'll share later. Afterward, Lil felt responsible for her daughter's disability, and this guilt drove her to improve on those decision-making skills. Lil got teaching certification in Special Ed to help Lisa get through school, then helped her get into college, where Lisa met me. It is no understatement to say that Lisa was Lil's reason for living. In 1992, Lil was diagnosed with Stage IV breast cancer, and beat it largely because Lisa was not ready to lose her mom. Just a few years after we met, Lil moved in with us, where she stayed until she died in July of 2009. Lil's last few years were spent making sure that Lisa was safe and secure, and married to the right guy. You could say Lil refused to die until Lisa was someone else's reason for living.
My new favorite thing about Christmastime is watching Larry Levinson movies on Hallmark Channel. They’re straight formula “Boy-meets-Girl” tales through three plot twists, a crisis and a climax, followed by resolution where the boy and girl in question ride off into the sunset together. I’ve seen it done a million times, yet I still love following each story through to its completely predictable conclusion, when I get my emotional payoff. That payoff used to be just identifying with the boy in the formula and wishing my life could be that happy.
But sometime recently I’ve had a revelation of sorts.
Lisa was born by emergency C-section after her mother fell from a horse while 7 months pregnant. Lisa beat 10-to-1 odds just living long enough to leave Doernbecker’s Children’s Hospital in Portland. With all her premie health problems, got misdiagnosed as mentally challenged, was given a 25-year life expectancy, and the promise of a life spent weaving baskets in a sheltered workshop when and if she lived to 18. She’ll be 38 in February, has 4-year degree and half-ownership of our business.
Thanks to Lisa, my life is becoming a story about making...
I don't care how careful you are, or how caring you are. If you are hosting a disabled relative, sooner or later something is going to happen that will injure them and make you wish you were dead. There is no worse feeling in the world than seeing someone you love get injured when you're too far away to prevent it.
In my case, I was across the room. Lisa sneezed while seated on the floor leaning diagonally against the couch. She had been waiting for her tea to cool, which was beside her on a little stool. The sneeze put her off balance, into the stool, spilling the scalding tea just before she fell into the tea spill. By the time I got to her, the damage was done. She had a superficial second degree burn on her arm about the size and shape of a sub sandwich.
Treating the burn was easy. That's what they have emergency rooms for. And pharmacies overflow with burn ointments and stuff to treat the injury with. The hard part is forgiving myself for letting it happen at all as Lisa suffers through the three weeks required to grow new skin where the burned stuff...
When three adults live together and share power within a single household, it's easy for disagreements to turn into the ugliest kind of grudges. When tempers flare, my biggest worry was always that someone would say something that can't be unsaid.
Not every marital bond will be stronger than that between a mother and daughter, so I had to always be careful not to say anything that would put Lisa in a place where she had to side with her mother because I was just plain wrong. I got pretty good at choosing my positions and choosing my words to protect my marriage. The tough part was keeping things together when one of the two women in my life said something hurtful to me, then finding a way to hear what they were trying to say and survive the experience with my serenity intact.
I came up with three universal theories that have served me well over the years.
1. No matter what a person does(or says), or how much it hurts you, they were doing the best they could, given the circumstances that existed in their lives at the time.
2. No matter what a person does(or says), or how much it...
Lisa and I were talking about some of the most important things we wanted to share with people who face the prospect of either becoming wheelchair-mobile or becoming a support person for a loved one who rides a chair. Some of the most important lessons came from the sad stories of friends who are no longer here to speak of these things themselves.
One lesson we recalled came to us from a lady who went through Life Skills training about the same time Lisa did. She was a few years older than Lisa when they met, though they were both children at the time. Both wanted to grow up and become taxpayers, contributors to society despite their physical challenges. "Jane" (not her real name) went to college and got her degree before using Affirmative Action's support to get a full-time job with a government agency.
So far, so good.
For those of you new to the wheelchair world, you need to consider this about what follows. The able-bodied have the capacity to push against perceived limitations in order to do more in a given effort. They can work while sleep-deprived, overstress and just deal with it, push on through exhaustion, and the like.
Just like the decision to marry, our decision to host a disabled relative comes with a commitment to be there in sickness and in health. But the former agreement is usually made in health, the latter is most often motivated by sickness.
So it can’t come as a surprise when the health of the disabled relative takes a turn, either temporary or permanent, downhill. Today, tomorrow, next week; someday it’s going to happen, and when it does, we had better be ready for it.
Our loved one most often endures some sort of chronic, permanent condition that brought them into our home in the first place. Even if their only health problem is old age, the frail nature of their health becomes everyone’s first concern.
Lisa and I have enjoyed eight years with her mother in our spare bedroom most of the time, mostly putting our focus on her mobility challenges because they are essentially what brought her to us. There were trips to the doctor nearly every month, but hospital stays have been rare for Lisa’s mom. Until this holiday season.
It began with a new medication that turned out, in hindsight, to be a bad idea. My mother-in-law lost...
Everyone has hot buttons, and for the most part everyone's hot buttons are different. Various things drive different perople nuts, and even the definition of "nuts" changes from one person to the next. But powerlessness is one of those things that can drive almost anyone to distraction.
It used to be one of my problems before I met Lisa. Among other things, comparing my powerlessness issues to Lisa's was a "mouse-to-elephant" comparison. Whatever they have in common, the difference between them is one of scale.
Beyond that, if you want to get really picky, her powerlessness is real. Mine, as I look at it when it visits me, is either a figment of my imagination, or the product of my bad choices, my weakness or my egotism.
Funny thing, though. When Lisa is facing something she can't do because of her disability, she makes a choice. She either accepts that she can't do that, or starts to change things until she either can do that or can do something similar to it. Only when I tell her that I won't help her make the changes does she go nuts.
We had an example come up not too long ago. We were...
No one who has ever done it will argue that giving care and assistance to a disabled relative is easy, but there are dozens of things we can do to make it easier. Likewise, there are some things we can avoid doing that make caregiving less stressful. High on this last list is avoiding unnecessary drama.
Drama is like gravy; it doesn't just happen, we have to make it. I'm not saying that creating drama when doing something difficult, unpleasant, or impossible offers no payoff. The sheer relief of venting built-up hostility or frustration, which drama accomplishes about as effectively as homicidal rage, makes drama attractive.
I've been in crisis more than once, and I've tried both methods for their stress-relief benefits. Lisa didn't like the rage very much, and I don't blame her now that I look back upon the episode. In fact, it was the act of dancing on the brink of disaster that brought my attention to drama as an alternative.
After weeks of introspection and soul-searching, I realized that drama brought catharsis more safely than rage, but neither one produced a particularly desirable end result. Both left Lisa and her mother in varying states of...
