Nov 1, 2002
Real Living with Multiple Sclerosis
TOM, A FRIEND OF MINE whose wife has MS, told a relative of his that he felt tired most all of the time, but didn't know why. He's strong and apparently in good health. He can lift Holly, his wife, and easily place her in her wheelchair or bed. He works out of his home and is the primary caregiver for his wife. The relative told him he was having a "burndown." He asked me what it meant and if I'd ever had it.
I laughed and told him I thought it must be something you have just before caregiver burnout.
When you're the primary caregiver of someone, you're subject to burnout. This happens despite how much you love this person and want to do the best job you can. The psychological effects of day-to-day care can begin to take their toll. The financial burden alone can wreak emotional havoc.
In Tom's case, he's physically strong enough, but what of the person who isn't strong? It's an exhausting task just getting through all the chores. I haven't been able to lift a wheelchair in years.
Tom's question really got me thinking about what we can do to prevent burnout. What are some of the early warnings we should recognize? No one is tireless When we do everything we can to help our loved ones, yet see no improvement in their condition, it's very easy to become frustrated. Sometimes it may seem that the harder we try, the worse they get. We may turn to alcohol or indulge ourselves with other unhealthy habits, such as overeating.
One solution is to try to be realistic about your loved one's condition. We all know that some individuals with MS can go for long periods of time and never get any worse. Others have ups and downs, yet lose more abilities with each exacerbation. If you're doing all you can, then you're doing your very best. For that, you're to be commended.
There may be times when a period of prolonged grief and depression becomes overwhelming. Resources for depression can be found by calling 1-800-FIGHTMS. Some caregivers can cry easily and get relief. I can't cry, so I become oversensitive about what others may say. I feel others are inferring that I'm not doing all I can. I believe I'm being attacked when they're really giving me constructive criticism. It's a battle that I'm still fighting.
I try to overcome these feelings by enjoying small, everyday events. I sleep when I'm tired, eat only when, I'm hungry, and call up a cousin to make me laugh. She brings out the best in me by reminding me it's probably about time I change the color of my hair again.
Another sign of burnout is feeling helpless. When we lose our zest for life, we often stop trying to make our situation better. We can lose our concentration and effectiveness. Being a caregiver is a difficult and often thankless job. It's very important that we take breaks in our routine as often as possible. It's best not to expect your loved one to be motivated all the time; this goes for the caregiver as well.
Don't expect pats on the back or understanding from everyone-there will always be someone to tell you what you should've done after the fact. There's no secret way to handle every situation. Most of the time we have to do what we think is best at the time.
If you find yourself feeling irritated about small things, withdrawing
from your friends, or losing your patience, this is the time to take stock
of what's going on inside you.
© 2002 Real Living with Multiple Sclerosis