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Posts Tagged ‘early onset alzheimer’s’

Want to know what caregiving is like?

It’s like running a marathon…with a bear chasing you.

You’ve got to pace yourself because it’s a long haul.

You can’t stop because you might get eaten alive.

Whether your mom or dad or spouse has early onset Alzheimer’s, ALS, Parkinson’s or COPD, sometimes caregiving can last decades. How do you do it? Where do you get the inner resolve? I hope you’ll leave a comment and share.

There’s another group of caregivers who know a thing or two about marathon caregiving. Nothing more sobering or inspiring than to meet a caregiver of a disabled person. Not all disabled people need caregiving, per say, but those who do know that at some point it has to turn into a symbiotic relationship–you have to need each other–it’s a two-way street.

Take Team Hoyt. If you want to be inspired learn a little about Rick Hoyt and his father Dick. Rick was born with cerebral palsy. What I know about this horrible disease is that once you look past it, you find some pretty darn amazing people. Rick wants to feel the wind on his face. His dad figured out how.

Together, they run marathons and triathalons. They are serious–no “give me a break cause my son’s disabled” –not for them. They are hard-core and do it together. Dad pushes son. Son is 100% committed. The two of them find their zen-zone and they definitely get some wind in the soul as well as wind on the face.

Take Amanda, she’s a gal in my writer’s group. She had a cerebral hemorrhage three years ago. Amanda uses a wheelchair and is paralyzed except for partial use of one hand. She had to learn how to talk again and struggles with her eyesight, but don’t feel sorry for her. She’s smart, has great come-back lines, and is more determined to be independent than a room full of three-year olds. 

She loves to write. She types nine words a minute. She think about every word she wants to write. Each month she brings her manuscript to be read. She has a goal to complete her memoir by 2015. I don’t doubt it a bit. Her tenacity inspires me. She lives in her own apartment and while she needs some assistance from her mom and others, she certainly doesn’t dwell on it.

If you’re caregiving for someone who’s going to be around for awhile (and that’s a good thing), then you gotta learn to pace yourself. Here’s what Amanda shared with me:

  • Look for things they can still do for themselves. Let them–even if it takes ten times as long.
  • Don’t coddle them. It’s insulting.
  • Don’t leave them out or think they don’t care about other people’s problems, however small.
  • Imagine–and plan your life with them. Don’t wait until “they pass” to have a life–get busy now.
  • Get lots of help. You can’t do it all and they get tired of seeing the same ole’ face.
  • Encourage them to make friends–and you do the same.
  • Watch your back. If you spend years helping/assisting/lifting someone, you better learn to do it where you don’t hurt yourself.
  • Be wiling to speak your mind. You can’t care for someone for years and not have a few “issues”  crop up. So get them off your chest and move on.

Amanda’s advice gave me a lot to think about. Seeing it from her perspective was refreshing and reminded me not to hover and to think differently if caregiving is going to be a part of my life for years to come.

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