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Posts Tagged ‘spousal caregiving’

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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For many of us, caregiving a spouse is in our future. We like to not think about it, or at least imagine that it’s a long, long time from now. For many, it’s a daily reality.

According to the Family Caregiving Alliance, there is a much higher likelihood of receiving care from a spouse than from an adult child. 
Nearly one-quarter (22%) of caregivers who are themselves 65+ are caring for a spouse. Personally, I think it’s higher than that.
And it’s not all the women who are doing the caregiving. 
I know lots of men who are caring for their wives through cancer, MS, heart disease and dementia.
 These men have my full respect. The ones I’ve met are kind, thoughtful, and are trying to very hard to give their wives the best of care. I’m sure there are many who are not like this, but I do have to pay homage to the ones who are.

So why does caregiving my spouse scare the bejezus out of me and most everybody else?

 Because my husband is my strength, my rock, the person I can rail against, nag, complain about–but would never want to do without.

Even when he gets the flu, I’m a wreck. I’m projecting into the future, seeing him years from now, weak, and me trying to care for him.

He’s 9 inches taller than me and about 60 pounds heavier than me, and the few times he’s had minor surgery, I’ve seen how difficult it is.

But that’s not it.  We’d find a way to make it work.

It’s not that it’ll be hard, exhausting, or challenging. I cared for my mom through Parkinson’s and Alzheimer’s. I’m no wimp.

So just why is it so hard to care give a spouse?

I’ll just vent and you pick the one that best fits you:

(some of them don’t paint me in a good light, but I’m being a guinea pig here so that we can all identify with our less than admirable selves)

I don’t want to become his “”mother.” (By that, I mean I want to remain his wife, lover, and friend).

I don’t want to be stuck by his side 24/7–I’m very independent.

I don’t want him to be weak–for me, or him. He’ll hate that.

If you’re sick, then I have to be well? What if I get sick?

Who am I now? How do I define myself?

I don’t want him to order me around all the time–and he will. I don’t want to fight all the time.

I don’t want to cry all the time either.

I don’t want him saying “thank you” a gazillion times a day and feeling guilty.

I don’t want it to be over.

I don’t want to watch him /her  slowly die.

I don’t think I can manage our life and home without him.

I don’t want the fun times to be over–the trips, the banter, the ordinary days.

I don’t want our world to grow small, isolated, and lonely.

I don’t want our world to revolve around doctors and medicine.

I don’t want that time to come when I can’t make him smile.

****

This just starts the list. No one wants any of these things. But until we can admit them, I’m not sure we can move on.

I know that the next step is to take this list and turn it into a WANT list, find the good in whatever life throws me.

I was at a talk for Community Hospice on Saturday at the Mary Singleton Senior Center in Jacksonville, Florida and I told this crazy story about a time when my husband passed out at an amusement park. He said he was dizzy, grabbed his neck and fell stiff as a board onto the gravel road.

I was freaked. I thought he died. And you want to know that first fleeting thought?
“You…(I’ll leave out the colorful phrase), you have died–died and left me to raise three kids? Alone?

I then began to pound on his chest (not CPR, even though I was trained) and yell in his face “Help!” What? As if HE could help us? I did it over and over.

Thank goodness, he started to come to, and then I had another thought…”He’s a narcoleptic! He’s going to be conking out all the time!”

I swear, I followed him, walking three feet behind him like some antiquated Japanese woman (did they ever really do that???) for the next two years.

As if I could catch him.

***

That true, but embarrassing example is a light hearted version of what wives and husbands feel everywhere.

Deep inside we’re all screaming, “Don’t leave me here without you!”

Spousal caregiving kicks up a lot of emotions. Some sweet and sentimental, some down right  self-serving. 

The only thing I can offer is:

  • Talk, talk often. Get used to this conversation so that if something awful happens, you’ll have practiced. Kid around, make jokes, talk about the “what ifs.” Nothing is as scary as an unsaid fear.
  • Tell your loved ones how you want to be cared for. Please, for your family and spouse, sign a living will. They are so, so easy. Go to The Five Wishes and request one or print one out. Don’t make your family guess and then fight or feel guilty because they didn’t know what you wanted–or they all heard something different.
  • Have health insurance, life insurance and long term disability or care insurance. I know the economy is tough, but try to keep these, or seek a governmental equivalent (for health insurance if you qualify). Murphy (as in Murphy’s Law) likes to strike the second you’re unprotected, and caregiving is tough enough without adding the stress of finances.  

If You’re Already Caregiving:

  • Be present. Each day is precious. Even if it’s hard, chaotic, or near the end, it’s a privilege.
  • Keep your blinders on when you need to. There’s a time to think about the future, and a time when this moment, this hour, is all you can deal with. When times get rough, make your life simple, quiet, and don’t go to all those scary places. It’s not the time.
  • Never stop being a spouse. I know that caregiving is a lot of “doing.” Meds, baths, physical therapy, doctor appointments, home health aids…after a while you can forget you’re a married couple. Never ever forget that this is the person you said ” I do” with. At times we have to force ourselves to step out of “Nurse Nightingale (or Nurse Ratchett’s) position and step back into that role that no one, no one but you can fulfill. You’re his sweetheart. You’re her sweetheart.
  • Give  up being perfect. It’s exhausting and impossible. It’s the quirks, the foibles, and the fights that define us. Do the best you can. Forgive yourself when you lose your temper, forget something important, or just can’t do it all. Look yourself in the mirror each night and say out loud, “You did well today. I’m proud of you.”
  • Trust that as grueling and dark as it is, you will find the strength, you will find your way through spousal caregiving. Somehow.

***

At the end of my talk, the very sweet woman had me sign her book. She could hardly talk, she was crying so. Her husband of 54 years has Alzheimer’s. I held her and cried too. I try to give tips and I try to encourage, but I can never convey how deeply I care. Your stories touch my heart, and sometimes, all the advice in the world won’t be enough. 

Caregiving a spouse is so hard. Why? Simple. Because we love them.

~Carol O’Dell, author of Mothering Mother

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