Feeds:
Posts
Comments

Archive for the ‘events’ Category

Caregiving does things to you–as a caregiver, a family member.

It takes you places.

At first, you might start out caregiving heroically–feeling that you can make a difference. You can “fix” this problem–that your loved one’s condition can be bettered if you could just…get in there…find the right doctor, get on the right meds, coordinate the proper level of care…

It’s a tough day when you finally realize you can’t fix your loved one.

You can’t fix their disease.

You can do very little to make anything about this “better.”

You learn to just live, love, and hope to be granted some small level of grace.

You may feel as if you’ve lost them forever and this can cause you to grow bitter if you’re not careful. We don’t like not being in control, not getting results.

 But what if one of the goals/purpose/benefits of your loved one getting ill, facing death is what it does to you, the caregiver? What if part of this is about you?

What caregiving does to you, asks of you, unearths in you? 

I’m not trying to be Pollyanna here.

Sometimes it all feels useless. You didn’t sign up for a life lesson, and this is really shitty. Pardon my French, but I’ve been there, and I used far more “French” than that in my caregiving years! 

If someone told me that I was supposed to get something out of caregiving, there would be some days that I would have definately thrown some heavy, possibly sharp object directly at that person’s head.

But as the target talking here, I’m going to duck and say it again:

What are you supposed to get out of this experience? 

I can’t, I refuse to believe that caregiving is just this terrible, horrible thing that you have to endure because life’s just like that. Caregiving is so much more.

As much as it feels as if your loved one’s personality is gone–that you’re caring for a body, not your mom, remember they’re deep inside. When my mother started to lose her essence, I had to sort of go on auto-pilot. I had to care-give because of my commitment, my integrity (which I was groping and grasping to hold on to).

The difficulty lies in the fact of what we knew they once were–vivacious, intelligent, gifted people who made an impact on the world.

I was in a caregiver support group recently where a woman shared that her husband was a Yale Law professor, and now he can’t even dress himself. Her grief was palatable. She was holding onto who he was–what he did, what he presented to the world. She hadn’t let that part of him go yet.

Although you may only get glimpses of your loved one, hold onto the knowledge that they’re there. It becomes a treasure hunt. I began to seek out glimpses of my mother.

I started to notice smaller and smaller details: the way her hands moved, the way she’d brush her hair out of her face. That was still her. I didn’t use my hands like that–that was her own distinct way. As the bigger, more obvious ways of communicating diminished, it helped to pull in, and find my mother as if we were enjoying a game of hide and seek.

Some nugget, some kernel of their spirit is still inside.

 

Since the release of Mothering Mother, I’ve spoken to several thousand caregivers and their loved ones across the country. I’ve visited care facilities, and I’ve found that no two people are alike. No two people with Alzheimer’s react the same way. Even in their “lostness” is unique.

I knew I had to let go of who my mother was, and sadly, I knew I had turned her into a list: mother, wife, minister, cook.

I had to decide to love who my mother is: a person, a woman, the core of a spirit.  

 

I read about a couple whose son had been in a motorcycle accident years before and was brain injured. He was still alive, but he wasn’t the son they knew before the accident.

They decided to hold a memorial service or celebration service–even though he had not passed away. 

They needed to let go of the son they once had–in order to embrace their new son. This new son still needed to be loved, still needed parents, but as long as they were holding onto that old son/old image–it hurt too much.

I know that parents of children with disabilities have to mourn their pre-conceived notions of their children, of what it would mean to be a parent. They must learn to love and embrace the child in front of them–their medical/mental challenges, the way they may look, talk, or act different. They must witness and embrace the new beauty, the new relationship before them.

This journey, this revelation changes them–and in the end, oftentimes makes them a better person capable of more love and peace than could have ever imagined.

You’re not really letting go of your loved one–of who they were, who they are–you’re enfolding that into you–you’re the keeper of time, of memory, of all you hold dear.

 

 

I love time theories and quantum mechanics, (I wrote several papers on it in college) and I read a great article by a physicist that explained that time and events(or place–for us to conceive time, we have to intersect it with place) can be seen as a wheel with each moment being a spoke–and our memory adds meaning to that event–so some moments or events “spike out.”

Each moment, each event stands apart and will always exist.

For me, my mother, myself, and all the moments I hold dear exist forever.

 My favorite author, Madeleine L’Engle says,

“The great thing about growing older is that we get to keep

every age we’ve ever been.”

 Carol D. O’Dell

Family Advisor at www.Caring.com

Syndicated Blog at www.OpentoHope.com

Kunati Publishers, www.kunati.com/motheringmother-memoir-by-car/ – 95k

 

 

 

 

 

 

 

 

Advertisements

Read Full Post »

Life lessons are everywhere, and I was recently reminded of what it’s like to be a caregiver by my two dogs–Kismet and Rupert. Kizzy (short for Kismet) is an Alaskan Malamute and her son, Rupert who is part lab. (She had a tryst in the front yard before we could stop her). Miracle was, she only had one puppy–so we had to keep him. Miracle number two was that Rupert was born the very week of the anniversary of my mom’s passing.

Recently, I was sitting outside with the two of them, their leashes attached to my lawn chair (they love to romp the neighborhood if set loose), only Kizzy wanted to go inside. It was a cool, there was a breeze, she had a water fountain next to her to drink out of, I was there to pet her and we had a beautiful lake and birds galore to enjoy–but no–she would have none of that. She wanted inside.

Kizzy strained and strained. Whined. Wouldn’t sit down and relax and enjoy being petted or play ball–nothing. Rupert, on the other hand is less stubborn, more easy going by nature, and so he  was sprawled out beside me just as comfortable as he could be.

Both dogs were in the same place, under the same circumstances.

One was miserable. One was content. It was simply an attitude on both of their parts.

As I sat there, I thought of how some caregivers–or care receivers don’t want to be where life has brought them. Whether it’s pleasant or unpleasant isn’t even the point. They simply don’t want to be there. Period. They strain. Whine. Refuse to become a part of their environment and just enjoy the ride.

Others bloom where they’re planted. They adjust, adapt, make new friends, look around,  and figure hey, if they’re going to be there they might as well make the most of it.

Attitude.

I’m not saying that caregiving isn’t hard. Lord knows I know how hard it is. My mom had Alzheimer’s and Parkinson’s,and in those last three years, I was Kizzy straining on the end of my very short leash.

I know now that I was scared. I was afraid my mother or that caregiving would consume me. I was afraid that if I was okay with it, that I’d never get to leave–or quit. I was afraid I’d never have a moment  to myself. I was afraid I was losing my indepence. Afraid. Afraid. Afraid.

Kismet, by the way, means fate.

I know that at times, I made it harder than it needed to be by not asking for and accepting more help, by realizing what a gift caregiving was (ironic gift), and by not seeing the beauty of where I was in my life. I missed certain opportunities by resisting so hard.  

If you’re miserable, edgy, antsy and irratated, ask yourself why?

At first, it’ll seem obvious–you’re exhausted, frustrated, sleep deprived, and perhaps dealing with a fussy loved one or facing death.

Ask yourself again–why are you miserable?

Keep asking until you get at the heart of the matter.

Ask yourself until you run out of excuses.

Why are you where you are?

Because it’s exactly where you need to be.

~Carol D. O’Dell

Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

available on Amazon

www.mothering-mother.com

Family Advisor at www.Caring.com

Syndicated Blog at www.OpentoHope.com

www.Kunati.com, Publishers

 

 

 

 

Read Full Post »

Do you feel like running away?

You may have restless caregiver syndrome.

What’s that, you ask?

I may have made up the term, but I certainly experienced it firsthand.

Have you seen the commercials for restless leg syndrome?

They’re kind of quirky, and I’m not saying that it’s not a serious disorder, but it’s presented in a way that makes my own legs twitch! Nothing like an idea planted in your brain.

But that’s exactly what I felt like some days as I cared for my mom who had Alzheimer’s and Parkinson’s. I just couldn’t sit still. I wanted to run, to stay busy, to go, go, go.

I guess I was scared.

I was scared my mother would consume me.

I was scared that this was going to be my life from now on, and that by accepting it now, I was accepting it forever.

I was scared that if I sat still, thought too long, I’d realize it was a mistake, that this wasn’t what I wanted to do. I was scared I’d grow old and not have the life, the adventures, the memories and journeys I’d always dreamed of.

Restless caregiver syndrome happens off and on in the caregiving process. It occurs when you’ve given up your old life in order to care for your loved one. It’s also compounded by a sandwich generation lifestyle where everyone wants something from you all the time. And, if you’re female, you may be dealing with the oh so lovely change of life–men-o-pause. And, on top of that, you’re probably a boomer and thinking about your own future, i.e. finances, career, retirement, aging, etc.

You became a caregiver because your loved one needed you. You did it believing it was the right thing to do. You told yourself there were some benefits—getting out of a dead-end job, able to spend more time at home, maybe take better care of your own health, or begin that second career you’ve always dreamed of.

Only…

Caregiving isn’t quite what you’d thought it’d be. You’re bored. Stressed. Unmotivated. Overwhelmed by all the stuff there is to do, and how little you feel you get done. You have time (sometimes) but no focus, no initiative.

Your loved one certainly needs your assistance, but you didn’t plan on becoming someone’s personal butler, driver, maid, and cook. They also seem to enjoy your being at your beck and call—or they’re miserable, fussy, or constantly apologizing. You didn’t think all this emotional baggage would come in tow.

You‘re consumed by caregiving even when you’re not caregiving.

You’re fumbling in your own life. Directionless. How long can this go on? The years stretch out in front of you like a vast desert. Some days, sure, you feel on top of your game, but there’s also an underlying sense of sadness. You know where this is going to end.

A restlessness has built up inside you. You gotta get out. You can’t sit in that living room chair one more minute. You can’t scramble one more egg. But you’re stuck.

How to Combat Restless Caregiver Syndrome:

·       Play a game with yourself: if you were under house arrest, but you weren’t caregiving, what would you do? What resources do you have right at home?

·       If someone gave you three years to reinvent yourself, what would you do? Learn a new language? Take some classes and become a computer whiz? Sell your handmade jewelry online?

·       Create a structure you can live with. You call the shots. You decide when dinner is, you decide the med routine. If you want your loved one to go to bed at 7pm so you can have the night to yourself, then arrange it. Create boundaries you can honor that make your life easier.

·       Start planning for time off. Check into respite care; hire a CNA for $20.00 an hour. It may take you a while to get all this in order, but do your homework, find someone you feel your loved one is safe with, and start taking regular breaks.

·       Don’t use your take out for anything that you aren’t dying to do. Go for a mountain hike, antique shopping, to the local pub to watch a football game—anything that will make you feel as if you’ve truly taken a break. No errands. No combining. Time off is time for you.

·       Create a room—your bedroom, a spare office, part of the garage that is just for you. Make it your haven. Put a cooler in there with drinks, stock a mini-bar, and collect magazines only you like— and go there — alone. Your family and loved ones will respect what you respect—and they will run rough-shod over you if you let them.

·       Call a friend and vent for 10 minutes. Set the timer and then just go for it. After that, tell your friend to forbid you from any further complaining for the day. Complaining and whining and griping are good, but not when it’s a toilet bowl that never flushes. I mean that visual to be disgusting so that you’d STOP. Incessant thinking is unhealthy.

·       Use your fidgetiness and wear yourself out. Do something physical—put all your anger and edginess into it. Clean out the frig, scrub the bathroom tiles and get out the gunk around the shower door. Use your restlessness.

·       Find a safety valve. If you’re really about to blow your top, how can you get away? Do you have an emergency person? Can you take them to adult day care? Are they okay for a couple of hours alone if you really couldn’t take it anymore? Have a plan B—because sometimes, it all gets to be too much.

·       If you have siblings and you’ve been carrying this burden alone—then make the call and insist they help out in some way. Even if it’s paying for home help, then that’s a help. Don’t let resentment and exhaustion build up. Tell them how hard it is. Insist you get a weekend off every few months—and a week or two of vacation time a year. You only get what you ask for, so ask!

·       Don’t be a perfectionist and think everything has to be exactly right and exactly your way. If you do, you’ll be a slave to the mundane. Choose a few things to do well, and a few things to do lousy. Nobody ever died because the forks were sticking up in the dishwasher.

·       If your loved one is being ugly, then get in the car and leave. Even driving around the block helps. I used to walk out back, down the embankment out at the river—and scream. So what if the neighbors heard! Better they hear me scream than gunshotsJ They’re adults and can be alone for 5 minutes and they need to be taught that you will not be mistreated. Make that point clear.

You get what you allow.

Sometimes, you’re just going to feel restless as caregiver. You’re going to want to run, to scream, to change your name to Flo and become a waitress on some seaside pier restaurant (my fantasy, not yours necessarily).

When you feel like running, then run. Get out as much as you can. Even if it’s just out the front door and around the block. Hide, sneak out, stay in bed an extra half hour, stand in your shower until the water turns cold. Do what your gut is telling you to do–at least in some small way. If you let off the pressure valve, then maybe, maybe the whole thing won’t blow.

Trust yourself. Trust your journey and this process.

Later, there will come a time when you might not be able to “run,” so do it now. Trust that you will come back.

After your loved one passes, you’ll go through this all over again—there’ll be days when you just can’t be at home. It’s a part of the grieving process. There’ll be other days, or weeks that you can’t make yourself leave. Home feels safe.

Again, trust yourself. Trust that your body, your soul, and your heart knows how to heal itself.

~Carol D. O’Dell

Family Advisor at Caring.com

Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir, available on Amazon

www.mothering-mother.com

www.opentohope.com

Read Full Post »

Are you stuck at home?

Stuck hours at a time in a hospital / care facility with a loved one?

Do you own a snap front house dress and wear it with socks and house shoes? (Guys…come on, fess  up.!)

Then you might need a caregiver re-invention!

It’s kind of like an intervention–you know, when your loved ones all get in your face and tell you your life has gone to pot and you need professional help….

If you’re not careful, you’ll lose yourself in the vortex of caregiving.

I know, been there–my mom had Parkinson’s and Alzheimer’s and lived with me (and my family) the last almost three years of her life. 

I had many, many days when I was too tired, lethargic, zombie like to do much of anything past cut pills, serve meals on trays and wash bed sheets.

But caregiving didn’t come in your life to drag you down. It also can provide incredible, unique opportunities.

If you’ve had to quit your job/work less hours/move or have your loved one move in with you, chances are you’re not going to be able to go back to your old life. Life has changed. You’ve changed.

The average caregivers spend 4.5 years caring full-time for a loved one–and 70% of all caregivers do it at home–and go it alone. Sad. Caregiving need not be that isolating.

You have to think creatively. Use adult day care while you can. Hire a sitter–a neighbor–someone you trust–while you can. There may come a day when you can’t. Even if you do have to put your loved one in a facility, you still have to check on them all hours of the day and night to make sure they’re receiving good care.

But…in the few snatch and grab minutes you have during the course of 24 hours a day–why not try something new?

  • start that memoir or write a poem–even a sappy one
  • buy a hummingbird feeder and take pictures of them–you don’t even have to go outside
  • buy some yarn, some knitting needles and a book
  • cook something you saw on the Food Channel
  • try an online college class
  • take up chess or soduku
  • try a home repair yourself–get a book from the library
  • buy a yoga DVD and do 5 minutes a day–build from there

Now, none of this is going to change the world, but it can brighten yours.

Before you go all snarky on me, grumble, complain you don’t have time–or energy for such malarky…give it a try.

No one’s watching.

Caregivers need a break and  no one’s going to give you a break until YOU give you a break.

I know it’s difficult to think about, but one day, your loved one will not be on this earth.

And you need to go on. You need to come out of caregiving a different person–with new skills and interests.

Caregiving happened for a reason, for many reasons–some of them good.

Reinvent yourself. You just might like the new you.

~Carol D. O”Dell

Author of Mothering-Mother: A Daughter’s Humorous and Heartbreaking Memoir

by Kunati Publishing

available on Amazon and in most bookstores

Read Full Post »

Join Author and Presenter Carol D. O’Dell

January 11th and 12th

Floricda Association of Professional Geriatric
Care
Managers Retreat
“Breakfast With Carol: Finding and Keeping Your Everyday Joy”
8am

Sarasota, Florida

************

January 14th

Amelia Island Book Club

Author Chat

7pm

************

January 19th, 10am

Florida Writer’s Association Meeting in the Ancient City
St. Augustine, Florida

************

January 28-April 4th, Wednesdays 1-3pm

University of North Florida
Lifelong Learning Institute

Neptune Beach Community Center
Memoir Class (Carol D. O’Dell, instructor)

************

 Feb 1, 2008

Dementia and Alzheimer’s Conference

Savannah, Ga.

followed by a booksigning at

Books A Million

8108 Abercorn St
Savannah, GA 31406
(912) 925-8112

5-9pm

************

Feb. 2, 2008

Caregiving Conference

Orange Park, Florida

10am-4pm

************

Feb. 9th, 2008

North Florida Writers

2pm

Wesconnett Library on 103rd St.

Jacksonville, Florida

************

Feb. 23, 2008

Booksignng at

Borders Bookstore

6837 W Newberry Rd
Gainesville, FL 32605
(352) 331-2722

1-4pm

************

March

Miami Dade Library Talk

tba

************

March 12th, 6pm

Voice of America Radio
Healing the Grieving Heart with Gloria Horsley

March 29, 2008

Atlanta Writers Club

Proposal Workshop

9am-6pm

$90.00

Register through www.atlantawritersclub.org

Location: tba

Check Back for More Events!


 

 

Read Full Post »