By Richard L. Bruno
When people talk about caring for someone with a disability, you often hear of caregivers getting burned out. When it comes to caring for polio survivors, it’s the polio survivor who often gets burned-not out, but up.
Many polio survivors get angry when it’s suggested that they ask others for help. Actually, their anger is hiding a real fear. Most polio survivors had painful early experiences of rejection and emotional and physical abuse, often by family members, just because they’d had polio. Polio survivors learned early and often that they should look “normal” and act “normal,” never asking for help or accepting care because they would be abused if they did. No wonder one study found that lifestyle changes involving family that were rated as most effective in decreasing PPS-asking family members for help and home accessibility modifications-were adopted least often by polio survivors.
Studies have also shown that family support increases polio survivors’ acceptance of new symptoms and decreases symptoms of depression, so it’s essential that caregivers let family members who are polio survivors know that they are valuable in spite of reduced physical activities. This is why the entire Post-Polio Institute treatment team meets with patients along with their families, and sometimes even friends, coworkers and employers. We answer questions about PPS, explain the reasons we’re recommending assistive devices and decreasing physical activity, and help to divvy up the chores-shopping, cooking, cleaning and laundry-among family members.
Others are usually eager to taking on physical tasks. Although most patients feel they are a “burden” to their families when they ask for help, the true burden is seeing a loved-one in pain and unable to function, not being asked to take out the garbage.
Polio survivors can also feel they are burdening their families by talking about unpleasant feelings they have about symptoms and decreased abilities. But feelings have a way of making themselves known whether you want them to or not. If you are irritable as a bear, yell at traffic and start sniping at your spouse, there is an unpleasant emotion inside of you that’s trying to get out. Since family communication have been found to significantly reduce polio survivors’ symptoms of depression and emotional stress, it’s better to tell your family what you feel-or even that your feel irritable and don’t know just what you feel-than pick a fight or kick the cat. Your family is there not only to care for you but also to care about you.
However, sometimes caregivers become “care commanders.” One of our studies found that there is such a thing as being too caring. Patients accompanied to their post-polio evaluation by a spouse, friend or family member were less likely to complete treatment. If family support is supposed to be so helpful, this finding makes no sense. But, it’s just a variation on the old saw, “You can lead a horse to water, but you can’t make him drink.” You can drag polio survivors to The Post-Polio Institute, but you can’t make them change, physically to emotionally, or stop them from quitting treatment.
We have seen another “care commander” phenomenon at family meetings. On a few notable occasions, not only did the patient’s spouse come to the meeting, the entire family showed up-grandparents, parents, brothers, sisters, children and grandchildren-as well as friends, neighbors and coworkers! So eager were these folk to help that they had already divided up all of the household chores among themselves. The caregivers had effectively taken the patients’ lives away from them, leaving them with nothing to do-except rebel. The patients fought against the caregivers’ theft of their lives and refused to do anything to manage their PPS. One patient actually went home from the family meeting and started painting the house!
These patients’ internal emotional struggle to make lifestyle changes was replaced by an external battle with caregivers and led to our “The Golden Rule” for polio survivors’ friends and family: “Know everything about PPS, say nothing and help only when asked.” Caregivers need to understand about the cause and treatment of PPS, but help with physical chores only when asked. Neither gentle reminders nor well-meaning nagging will force polio survivors to eat breakfast, use a cane, take breaks or stop painting the house. Polio survivors must learn to care for themselves before they can ask for care to be given by others.
Dr. Richard L. Bruno is Chairperson of the International Post- Polio Task Force and Director of The Post-Polio Institute and International Centre for Post-Polio Education and Research at Englewood (NJ) Hospital and Medical Center. His new e-Book, How to STOP Being Vampire Bait: Your Personal Stress Annihilation Program, is now available through PostPolioInfo@aol.com.
