Allow Loved Ones to Set the Pace of Increasing Dependence

"As illnesses progress, loved ones may gradually lose different aspects of independence. Reduced independence is measured not only by physical activities but also by emotions. The abhorrence some people express about wearing absorbent briefs or using a catheter doesn't just involve physical discomfort: the thing they abhor is an undeniable sign they are getting closer to becoming incapacitated. The balance point between being helpful and aiding someone's independence constantly shifts. Becoming aware of it can allow you to be helpful without being solicitous.

"When I was caring for my brother-in-law during the initial stages of his brain tumor, he did some dangerous things, such as insisting on walking without a cane or walker. He finally agreed to use both after coming to terms with his limitations. I've found that accepting a new, diminished capacity is a problem for many people, regardless of the illness. Often a frank, compassionate discussion of what a person is denying can change his behavior or, if not, at least allow the caregiver to understand why his loved one chooses to do something that may hurt himself or others. For my brother-in-law, walking unassisted had nothing to do with getting from one place to another. Rather, it was an expression of his independence.

"I've found that when working with seniors, people recently disabled, or those with a chronic or terminal illness, it is sometimes futile to try to convince them not to do certain things. When that happens, try an alternative approach. Find out why your loved one insists on doing something she knows has potentially harmful consequences. When I was being treated for prostate cancer and was weak, I frightened my family when I insisted on taking a solo wilderness fly-fishing trip to the High Sierra. It wasn't that I didn't know what I was risking, but that my need to hold on to a part of my identity seemed important enough to outweigh my good judgment and concern for my family's feelings.

"One of the hardest things for a person with a progressive disease to accept is a developing disability. The people I've served constantly struggled to balance their desire to feel independent with their realization that they needed help. 'Should I offer to help?' a confused caregiver asked me. 'Will she think I don't believe she can do anything? And if I offer help, am I implying that I think she's doing worse than she thinks?' Acceptance of a disability is a complicated matter. It's not just the willingness to go from independence to dependence but also the acceptance of the reality that you are becoming a different person.

"One client said to me that in the beginning of his ALS, friends would hover over him as if he had already lost control of his arms and legs. 'It was a difficult discussion for all of us, but we had a meeting where I told everyone that I knew I would eventually lose control of my muscles, but that, for the time being, there were many things I still could do. And I wanted to do as much as I could, for as long as I could. Did I need help? Of course. But, I said, "Let me tell you when, and what I need." '

"Being overly helpful may require a loved one to accept his chronic or terminal illness before he is ready. Allowing too much independence may come across as being uncaring and, in some cases, may be dangerous. The best approach is to follow your loved one's lead. Ask him to let you know what he needs and what he can still do by himself. If you notice a reluctance to ask for help, it's time to have an honest discussion — one in which you focus not on his denial but on how the behaviors that are jeopardizing his safety frighten you."