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Archive for July, 2008

A Survival Guide For Major Health Crises, Part One

Monday, July 14th, 2008

On June 10, my sister went into surgery to remove a golf-ball-sized tumor in her head. On June 11, she had a stroke. These past weeks have been the hardest of my life (and obviously, Judy’s) so far. I’m Judy’s primary caregiver and have never dealt with anything like this before. I’ve been flailing my way through, doing my best. I’ve learned many things in this short time. Below are some of my first thoughts that might help others who find themselves in the same situation.

Number One: The Caregiver must take care of themselves and build a caregiving team. Be honest about what you can and can’t do. Don’t run yourself into the ground (like I did). You can’t be by your loved one’s side 24/7. Yes, you have to take care of them, but that does not mean exhausting yourself. If you get sick or falter, your loved one will suffer even more. But be careful about your team. There are many idiots disguised as helpers out there. Be brutal in your evaluations of the offers that come your way. You don’t want to add more work to your already over-filled plate.

Number Two: If you are the main caregiver, your only responsibility is to your loved one. Not to the four hundred people who freak out that something bad happened and want you to console them. I can’t believe some of the knuckleheads that have been plaguing me. Many have come up with more things for me to do. “You should start a Yahoo group and blog everyday about what’s going on with your sister.” WHAT???? When would I do that? I’m either paying Judy’s bills or driving to the hospital or filling out paperwork or going through scary what-if scenarios with nursing home administrators or trying to devote a few spare minutes to handle the four thousand details of my own life. Which brings me to Number Three.

Number Three: To the friends and extended family of the patient and main caregiver: be a help, not a hindrance. If you are coming from out-of-town, don’t expect to be put up at the main caregiver’s house. Stay with friends or rent a motel room. Don’t burden the caregivers with your needs. Don’t let your kids run all over the house and saddle the caregiver with more work. Ask how you can help. Clean, cook, water the yard, take the patient to a therapy appointment. In other words: DON’T BE AN IDIOT. The Main Caregiver is overwhelmed and is probably on the verge of losing their minds. I know I am. Which brings us to Number Four.

Number Four: Be nice to the Main Caregiver. You’d think this would be obvious, but I have endured more second-guessing and abuse by idiots than you can imagine. Think before you criticize the caregiver. Make sure the information you received is accurate before you call up and rant at someone who is doing their best and is already at the end of their rope. Or they may bite you.

Number Five: Don’t treat the patient like an idiot. Assume they can understand you. Assume they are in there. Treat them with respect. And please don’t shout at them. Just because someone can’t speak doesn’t mean they can’t hear. Keep your visits short. The wounded have very little energy, be careful with it.

Number Six: Beg, borrow or steal some health insurance if you don’t already have it. Get long-term health care insurance when you’re 65. You don’t want to know what happens to people without it. There are many fates worse than death. And yes, I’ve heard all the excuses. “Oh, that won’t happen to me. Strokes and accidents happen to other people.” Well, guess what? You are the “other people.” Another one I’ve heard from friends: “I can’t afford it.” Well, you can’t afford NOT to have health insurance. Most of my friends who’ve said they can’t afford insurance still manage to take vacations, buy concert tickets, iPods and new clothes. Skip the freakin’ extras, get the insurance. At least get catastrophic insurance. The money is not wasted. Without insurance, navigating our broken health care system is a nightmare and a potentially fatal experience. Even with insurance, it’s a nightmare. Basically, our health care system is a nightmare. Best to protect yourself with as much insurance as you can afford.

Number Seven: Eat right and exercise. If you are overweight, get on a freakin’ diet, NOW. This will prevent 70 percent of cancers and most illnesses. And if you do get sick, you’ll recover faster. My husband Frank works on medical magnetic imaging devices and sees the insides of people all the time. Basically, if you’re fat and unhealthy, your insides look just as bad as the outside. And sorry, but candy is not a food group.

The Most Important Thing I’ve Learned: Tragedies bring out the worst, but also the best in people. A core group of people has come through for me in extraordinary ways during this event. My life is completely changed because of it; my heart feels fifty times bigger. Sometimes your greatest lessons come from life’s most painful events. Be open to the lessons and the love, even when you’re in the middle of what seems to be the worst days of your life. You’ll be amazed at what’s there for you, if you only have the eyes to see it.

Author’s Note: When Judy had her stroke, the doctors told us it was so massive that she would be institutionalized for life. Lucky for us, Judy proved them wrong. She’s making a miraculous recovery and eventually she will regain what she has lost. By the time you read this, she will be living with me and healing. I’ve never felt more blessed.

P.S. A special thanks to the team watching Judy’s house and cats. You guys are the best!

©2008, Janet Periat

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