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Caregiving comes from the heart but education helps

by Carol Bradley Bursack, Editor-in-Chief

Most family caregivers take on tasks as they see fit. Sometimes a parent has a stroke and suddenly needs care. Other times dementia enters the picture and the need for help progresses slowly. Few caregivers immediately think that they need to get educated about how best to care for their elders. But education does help, if only because it shows the caregiver that there are options.

My first elder caregiving experience was with my neighbor, Joe. His wife died, and he was left old, deaf, and alone. His only son lived half a continent away. It was instinctive for me to help, and I never thought, "How long will this last?" I grew to love Joe as a friend, but I also felt a duty toward him. An elder alone isn't a good thing and I'd always been a natural caregiver.

At the time, I had two young children, and they, too, became part of Joe's family. Little did I know that I'd spend five years caring for Joe.

Becoming Aware of In-home Care Agencies and Personal Alarms

The first couple of years with Joe were generally fun. After that, the years started taking a toll on Joe, and he had a few tumbles. One of those falls happened when he was out in his garage lighting his charcoal grill. When I looked out my kitchen window and saw him lying on the garage floor, I ran to him and found him in great pain. I called 911, the ambulance came, and we took Joe to the hospital.

By the time we were done with the hospital, Joe had been assigned some in-home nursing care and other help. He also was on the list to have a personal alarm installed.

The in-home care was stopped before long as I was able to care for Joe when he got better, but we kept the alarm. That little device was the reason I was able to get to him after his final fall. It saved him from a night of agony on his kitchen floor, as I'd just left him an hour or so before and would not normally have gone back over until the next morning. Because of the alarm, I was notified and quickly went back to his house to find him lying on the floor. That day, I became a fan of personal alarms. I was learning.

More In-Home Care and Another Alarm

Not long after Joe's death, my uncle had a second stroke. When he got out of the hospital, he went back to his apartment, and since he was alone, we hired in-home care for him during the day. He had my parents and me on call, but he liked company and the agency women were good to him. They ran errands and everything went well. He wore a personal alarm so that if he got up at night and fell, or had another health emergency, he could get help. This combination lasted a couple of years until my uncle had another bad stroke and needed a nursing home.

Four Elders One Caregiver

After that time, my elders fell like dominoes. My dad's brain surgery put him in the same nursing home as my uncle. My father-in-law died, leaving my frail and memory impaired mother-in-law alone in her condominium. My mom needed another hip replacement. She stayed in her apartment. I ran from place to place everyday, delivering food, cooking, cleaning, bathing--trying to be everything to everyone, including my two children. It was nuts.

I can say that now. I am more educated about caregiving and I have some distance. If I could go back and talk to the person I was then, I'd say, "Give it a rest and get some help."

To be fair to myself, there are many more options available now than there were when I began caregiving and these options continue to grow. But I didn't know any way other than to give my personal care to all of these people all the time. After all, they wanted me. They didn't want some stranger, they wanted me.

How could I not do these things?

And how could I know that my caregiving would span two decades?

Support Groups and Outside Agencies

This is where a support group would have come in handy. I would have been able to listen to people who really understood what I was going through. I don't know when I would have had the time to attend a group meeting, which is still a problem for the most caregivers, but at least if I couldn't go in person I could have had an online option. Instead of attending a support group, I wrote a book. I interviewed other caregivers and I suppose in that way I did have a support group, scattered as it was.

Getting Educated

Nearly every state now has on their main Web site an "aging" link. Nationally, we have an aging population. Most states recognize the need to care for this aging population, as does the Federal government.

Every state has some form of the Family Caregiver Support Program, under this link, which offers a variety of support options and education.

  • You don't know how to bathe your mom? They may have training for this.
  • You need someone to talk to? They will help you find a group.
  • You need to see if there is in-home help for your dad who is on Medicaid? They should be able to guide you to the right agency to get these services.
  • Respite care? They likely have a few hours to give you so you can have a little time to yourself.

Outside Help Doesn't Mean You Aren't Good Enough

You can also call disease specific agencies or find their Web sites. The Alzheimer's Association and the Alzheimer's Foundation of America both have a great deal of information online or by phone. Check Alzheimer's in your local phone directory. Is arthritis the problem? Call the Arthritis Foundation or visit their Web site.

Lean that getting outside help doesn't make you a failure. As the years march on, many people come to a point where they say, "Yes. Getting help is good for both of us." If that describes you, pick up the phone or go on the Web. Help is out there.

You just need to get educated enough to find it.