by Jeff Lester

As a person with ALS who has been fighting this disease for over 11 years (seven on a vent), I realized early on that if I were to have a somewhat normal life, I’d have to depend on my incredible wife, Lisa, to achieve it. This meant that I’d have to follow some rules about the way I treated her, my primary caregiver. It’s essential that caregivers and care receivers have some ground rules about their behavior toward one another.

The rules I’d give to caregivers are: Keep the relationship the same as it was before ALS (don’t make it an adult/child relationship). And don’t abuse the power you’ve been given as the other person becomes dependent on you.

Lisa’s and my close relationship only partially prepared us for the changes that occurred as I became dependent on her for my most basic needs. Therefore, this transition may be even more difficult for two people who don’t start out with a close relationship, especially if the person with ALS neglects his or her role in the relationship. That’s why the following rules are for the people with ALS:

Don’t take advantage.

When I have to ask for something, I ask myself, “Am I using my condition and others’ empathy to get something extra?” For instance, we shouldn’t demand a gourmet meal when Spaghetti-Os were OK before, or insist on watching what we want on television (I’ve had to develop an appreciation for Lisa’s soap operas since I’m around all the time now). If we violate this rule, I feel it’s entirely appropriate for our caregivers to call us on it.

End pity parties.

Those of us with ALS alone are responsible for our happiness. I don’t mean that we shouldn’t express our true feelings of frustration or pain about our situation, but we shouldn’t wallow in it. If we do, it’s right for our caregivers to point it out.

Be useful.

No matter the limitations, there always are ways that people with ALS can be useful, contributing members of our households and world. It’s up to us to find out what those ways are, even if it’s just listening to those around us and being supportive. Contributing is vitally important because it allows us to see that our lives still have meaning.

Take care of yourself.

As much as possible, people with ALS need to stay involved in planning for their needs, whether it’s a lift, wheelchair, adapted van, special diet, constipation aids, feeding tube — whatever. Also we must keep in mind easing our caregivers’ burdens whenever possible. We should keep knowledgeable about the best way our needs can be met, and when possible we should be the leader in our care decisions. It’s entirely unacceptable to take a passive, or even worse, a resistant role in care decisions and then complain when something is not done to our liking.

It’s inevitable that problems are going to arise between caregivers and care receivers. It’s helpful for both to write down their needs and talk together when they’re calm. I think the most important thing that my wife and I do is to make sure my care doesn’t interfere with our normal spousal relationship. We absolutely don’t let disagreements over my care have any impact on our marriage. Care and marriage are best dealt with as two totally separate relationships.

I feel strongly that those of us with ALS have responsibility for our own care and actions, even though our lives may depend entirely on the efforts of our caregivers.

May God bless our caregivers for all they do for us!

(Excerpted from the MDA/ALS Newsmagazine, February-March 2005)