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Old Fri Dec 1, 2006, 04:36 PM
Neil Cuadra Neil Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
Getting through the day as a caregiver

As caregiver for my wife during her illness and treatment for AA and MDS, I know how much work it can take to help a patient while at the same time juggling everything else in life: work, family, and running a household.

In a crisis, we caregivers can summon our strength and rely on our stamina and adrenaline, but dealing with a bone marrow failure disease is more often a prolonged struggle. Nobody can keep up a pace that's beyond their capacity, no matter how dedicated they are. Of course we want to do the best we can to help the patient -- our spouse, parent, child, relative, friend -- but we will be less able to provide care if we let ourselves get run down or perpetually stressed out.

So what do we do? Each of us has our own way of dealing with the limitations of our time and energy, but I can tell you what has worked for me. I have found three ways to keep myself going:

1. Taking care of myself.
I knew that if I got sick it would be doubly hard to take care of my wife. So I made sure to eat right, take a break for myself now and then, and to get enough sleep each night, even when my wife was up or I had the urge to stay up late to get a few more chores done.

Sometimes I'd feel guilty for taking any time for myself, so I had to remind myself that it was the best for everyone if I took care of myself. I still catch a cold now and then, but I get them less often since I've made that conscious effort.
2. Letting others help.
Lots of people said "let me know if I can help" when they heard that my wife was ill. Some of them were just being polite, but others really were offering to help, even though neither they nor I knew how they might help. I didn't realize it at first, but when I had too much to do and couldn't keep up, that was the proper time to ask those people for help.

Sometimes my wife and I thought people we knew (relatives, friends, neighbors, coworkers) were avoiding us because they weren't interested in how we were doing, or because they were afraid of this "mysterious" disease. But I learned that many of them worried that they'd be "intruding" if they phoned, visited, or asked too many questions. Some said they didn't want to risk waking my wife or interfering with her recovery if they called at the wrong time, so they didn't call at all!

The solution was for me to pick up the phone and call them, either to chat or to ask them to do something specific for us: give one of the kids a ride somewhere, do an errand, etc. In hindsight, I realize that I should have done this more than I did. People were ready to help and they actually felt better once they could.

Professional assistance is often available to caregivers too. We found a helpful social worker at the hospital, for example. But I found that the people who lived near us were the best resources when I needed help getting through the day.
3. Letting go of less important things.
Before my wife got sick, we were like most families, dealing with life, work, family, and the routine problems we ran into, and following our interests and hobbies. But after my wife got sick, there just wasn't time for everything we were used to doing regularly.

We had to give up some of those activities, and the trick was to avoid worrying about it. So what if the magazines were piling up? We had to cut back on hobbies and volunteer work we both did, and skip events we would normally have gone to. I had to become more flexible and less fussy about following our usual weekly schedule of chores and activities. These things may seem important at the time, but in the scheme of things they really aren't, and we had to keep that in mind.

We learned a bigger lesson: that what's important in life is our time together, our health, our family and community, and how we help each other. We've retained that lesson even as my wife recovered. Now, when we run into the same day-to-day frustrations that everyone faces, we fret less over them and appreciate that we're together to deal with them.
These methods may not be the best ones for everyone; coping techniques differ from person to person. But if you are a caregiver, please don't forget that your well-being matters too, so it's important to find what works to help you manage your time and maintain your physical and mental health. You, the patient you care for, and your family will all benefit.

If you have your own methods for managing your time and sanity while caring for a loved one, please share them.
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