Hear Directly From ALS Caregivers
When caring for a person with ALS, it’s easy to feel alone. It is important that caregivers talk to other caregivers, either online or in person, to communicate their challenges, share information, and, most importantly, connect with someone who understands what they’re going through.
Barbara Dickinson first became involved with the ALS Association after her husband, Brian, was diagnosed with the disease. Barbara is a former national trustee of The ALS Association and a trustee of The ALS Association’s Rhode Island Chapter. We’ve shared her testimony here so other caregivers can learn from her experiences and her coping strategies.
We want to emphasize that this tells the experiences of one individual at a certain time in her life. Certainly, not all people who live with ALS or care for a patient will have the same experiences that Barbara has had, and not everyone will or would develop the same opinions that Barbara has.
“I can’t remember that anything has ever frightened me more than the prospect of living with this disease. I think my first reaction, and I know my husband’s, was just cold fear. It would wake me up in the night. It would be the first thing I would think of in the morning. I had no idea what we were going to do, how we were going to handle it. And with that fear was a grief so terrible that I used to have to stop my car by the side of the road on the way home from work so that I could cry and then try to keep on going.
“I realized that I was also very angry. What made me realize I was angry was that I began to drive like a maniac. I couldn’t stand to have anybody in the passing lane who wasn’t going as fast as I thought he or she should be. I couldn’t stand for anyone to do something stupid. I had no tolerance or patience for anything that was going on. I was also terribly worried about how I was going to handle this and where the money was going to come from, how we were going to get through it as a family, what the future was going to hold, how would we handle each new day as it came up. And there were terrific feelings of isolation. I stopped being who I thought I had been, and I became this other person, this caregiver. I was no longer really a wife. I was no longer really a mother. I just had this other identity where I was taking care of someone who was getting worse and worse every day.
“As far as physical ailments go, I had backaches, I had a lot of tension, which resulted in headaches and a lot of other muscle aches. My blood pressure went up. I lost quite a bit of weight in the beginning. And my boys, who were now working at least as hard as I was physically, had back problems and muscle aches.
“I dreamed regularly that I had ALS. I still do, although maybe a little less frequently. I would be trying to walk somewhere, and I couldn’t lift my legs. I would be trying to climb a flight of stairs, and I’d have to reach down with my hands and lift one leg after the other to go up a flight of stairs. I couldn’t run in my dreams. And I would wake up from these dreams because somewhere in the last minutes of the dream I would think, ‘but we can’t both have ALS.’ So I’d wake up in the dream, thinking, ‘Thank God it was only a dream,’ but on the other hand, that’s what he’s got. This is what he’s going through.
“And I also used to dream, and I still do once in a while, that I had this huge mess to clear up. I had a lot of things I had to pack. They all had to be put in boxes or suitcases, and I had to get this all done so that I could catch some kind of transportation, a train or a plane or something, and I could never get it done on time. No matter how hard I cleaned or how fast I tried to control it, the mess just spread and spread and got bigger and bigger. So inevitably I missed whatever form of transportation it was.
“On the advice of our wonderful family physician, I saw a psychiatrist and went into counseling with the psychiatrist and so did my husband and my children. Finally I took some antidepressants, which made a big difference to me because they allowed me to sort out my concerns and prioritize what was important and what wasn’t important.
“I also had wonderful advice from a dear friend, who said two things to me. He said, first of all, you’re going to find out who your real friends are. People that you think you could count on are going to disappear, and other people are going to come from nowhere and help you out with this. And then he said, lots and lots of people are going to be taking care of your husband but nobody is going to be taking care of you. So you’re going to have to find out a way to take care of yourself.
“And I began to do something I’d never done before in my life, which is to go have my nails done every week, which was an opportunity to get in a kind of girly environment and let somebody do something for me, and it was an hour, and it wasn’t very expensive. So it was something I could fit in. And it did help.
“In the beginning, I absolutely hated what this disease did to our lives. I hated every modification that we had to make. I hated having ramps for wheelchairs. I hated having handicapped lifts in bathrooms. I hated having equipment all over the house. I hated that the kitchen became a pharmacy because I began to feel I was losing the only haven I had, which was my house. But now, I don’t know what it would be like to have a house that was not a hospital. One of our rooms is a hospital room now with a hospital bed. There are ramps all over the house. There is equipment everywhere. We’re used to it now. The difficulty is there’s no privacy. I don’t have anywhere to go in my house now to be just sort of a normal person. I can’t come downstairs in a slip to get a glass of orange juice or any of those things that people normally do in their own houses because I’m never alone in my house. In fact, there can be ten or twelve people in and out of the house in a week, bringing in supplies and doing various things that need to be done. So it’s made me retreat to a certain extent into my bedroom as a sanctuary.
“Of course, I’d really like to find a cure, or at the very least a management for ALS. And I’d like to see that insurance providers would come to recognize the burdens that they impose on caregivers, not just for people with ALS but for people with Alzheimer’s, for people with cerebral palsy, for people with all the other diseases for which 24-hour care is essential to the well-being of the patient. I’d like them to realize what kind of burdens their policies place on caregivers and on the patient, and I’d like to see them address how they can become more humane and more caring.
“Lobby your representatives and your senators and try to get them to understand that we have to change the healthcare system in this country and that the healthcare insurers have to change their policies so it becomes a better place to live in America when you’re coping with an illness.”