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Caregiving is complex.

Many family situations are a continuation of a long, tangled history.

There are stubborn siblings, financial headaches, cantankerous parents, emotional memories kicked back up, frustrating home heath aides, and confusing health insurance concerns. This is just the surface–throw in worries like a naked, wandering Alzheimer’s loved one, your mother feels cheated on (or is cheating) while her husband is in a facility and no longer remembers any of you, your home health aide stole your wedding ring (you suspect), you lost your health insurance and have to go back to work, but how? Or maybe your mother is like mine and kicks your cat or your partner says caregiving is killing you and insists you give them attention too.

I know how hard it is to find safe, how challenging it is to find reliable help, or you get into a big fight with your dad (and your neighbor) because he ran over your neighbor’s dog and he still refuses to give up driving. Some questions go even deeper–you’ve become hooked on pain meds to compensate for your back from all the lifting and you’re fighting depression, or just how bone-deep scary it is to think that you have to decide whether or not to stop life support and you’re afraid all your family will blame you for not doing enough…the list goes on.

I”m now a “Family Advisor” on www.Caring.com, and these are just some of the types of issues families write about.

It’s not that I’m a know-it-all or that questions always have neat little answers, but I’ll do my research and offer suggestions that are not just technically correct but delve into the heart of the matter. Relationships are not cut and dry, and it’s not easy to just make a decision and carry it out–not when there are other family members involved who may not agree with you–and not when even the decisions that you have to make aren’t easy to deal with emotionally.

Life can’t always be “fixed,” but I’ll do everything I can to offer some valid help and direction as well as support you, the caregiver/spouse/friend. It won’t be cut and dry either. Humor, spunk, and tenacity are great weapons people forget they have, and sometimes we have to use guerrilla tactics to get anything done, but when integrated with love and commitment serendipity can occur.  I won’t sugar coat caregiving either, or wrap it up and slap a bow on it, or belittle the guilt or everyday stresses can just get under your skin.

I know how all this eats away at what fragile hope you have remaining.

By writing a question (even anonymously), you are asking not only Caring.com for advice, you open the window for opportunity. I firmly believe that by simply asking the question you start to attract the answers/solutions. By verbalizing your fears, frustrations and concerns, you can then begin to visualize how this can be solved or at least some of the tension relieved.

You’ll feel less alone. You have options.

If you know of anyone who is in an emotional or ethical quandry consider suggesting Caring.com.

They have sections for all types of care–mental illness, cancer, MS, diabetes, Alzheimer’s, and many other points of connection.

Caregivers need every resource they can get their hands on–in their community and on the Internet.

I hope that my book, my blog, and now this family advisor column will help you feel less isolated and show you that you’re not alone. You’re surrounded by people who care.

~Carol D. O’Dell

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

available on Amazon

www.mothering-mother.com

www.kunati.com

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Caregiving isn’t exactly synonymous with a spicy love life–not until now. Maybe a passionate love life is just what the doctor ordered…

 

Dr. Christine Northrup, Oprah’s gynecologist on speed dial and author of Women’s Bodies, Women’s Wisdom, and the Wisdom of Menopause suggests that you spend 30 minutes three time a week in “self love.”

(Yes, that’s right. We’re talking about the M word)

Now, I can only speak for myself here, but unless “self love” includes eating a bag of Dove chocolates, painting my toenails and thumbing through a magazine, I’m going to have about 27 minutes to kill.

 

It’s not like I have to woo myself or assure myself that I’ll respect me in the morning…

 

As a caregiver, mother, daughter, sandwich generationer, pet “mom,” I have to tell you, thirty uninterrupted minutes is hard to come by.
(pah dum,dum)

 

I figure I can blog about this if Oprah can discuss it at 4:00 in the afternoon while I’m making chicken pot pie.

Besides, a healthy love life is important–and most of us would rather “play with others,” so let’s take the leap.

 

Why bother? You haven’t got time? You have no drive?

You’re beyond exhausted? You’ll deal with “that” later?

 

Here’s why it’s crucial: 

 

Being a passionate person spills over into everything in your life–how you dress, walk, what you choose to eat, how generous you are with your time and energies, how affectionate you are to all living creatures–not to mention the effects giving and receiving love has on your heart, immune system, psychological, emotional and spiritual foundation.

 

Here’s a few tips for revving up the ole’ love life for couples who are also caregivers, raise kids, and walk dogs. Believe me, I’ve been there–forty pounds heavier than I am today–sleep deprived, irritable, and pulled in a thousand directions–and living with a loved one with Alzheimer’s isn’t exactly conducive to candles and teddys.

 

Mom’s Home—Quick, Lock the Bedroom Door!Enjoy Your Relationship Even if Your Mom

Lives With You

· Put a lock on your bedroom door—and use it
· Sneak around—intimacy doesn’t just have to happen in the bedroom. Be playful! Flirt!
· Nix the old t-shirt and sweats and wear attractive PJs—they don’t have to be overly sexy to be attractive.
· Stay affectionate–even if you have to make yourself at first—call each other during the day just for a “Hi, and I love you,” hug and kiss hello and goodbye, cuddle on the couch, call each other affectionate names/ take baths or showers together (you do remember those?)
. Take short walks together—even 5 or 10 minutes of fresh air is invigorating and gives you a chance to talk
· Plan a surprise—sneak out to the yard after dark to cuddle on a quilt under the stars with cups of hot chocolate
. Laugh! Rent a comedy, pop some popcorn and sit ont the couch together–not in dueling recliners
· Don’t sweat it if you aren’t in a lovey-dove mood–caregiving is stressful and there are seasons in life. Remember though, a healthy love life is healing, satisfying and stress relieving—and better for you than a bottle of Scotch

  • If you’re a care partner, you have also face physical challenges. Talk, cuddle, find out what works and what doesn’t. Don’t think you have to “go all the way.” Find your own way.

Being a caregiver, care receiver, or care partner doesn’t mean you–or your loved one is dead. Unearthing those needs and desires means you’re still alive. Love and passion are vital.

Say “yes” to LIFE every chance you get.

And don’t forget–holding hands is still pretty darn great.

Happy V Day!

~Carol D. O’Dell
Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir,
available on Amazon
and in most bookstores

Kunati Publishing

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I’m a sandwich generation caregiver.

My 89-year old adoptive mother (who suffered with Parkinson’s and Alzheimer’s) moved in with us–my husband and I, two of our three daughters, plus a menagerie of dogs and cats.

My situation won’t be the same.

We have three daughters, and I had all of them while I was in my twenties.

That means when I’m 89, my daughters will be 67, 66, and 63. Yikes.

I hope they’ll be in good health and that we can all toodle around and take road trips, eat triple decker double-dipped ice-cream cones and enjoy our grandchildren–and my great grand children.

But there are no guarantees we’ll all be in good health.

And being in your late sixties and caregiving can’t be a picnic.

Just ask all the boomers who are starting down this road now.

Ironically, my mother-in-law has a mother-in-law. Neither are spring chickens. My mother-in-law is 79, and her mother-in-law is 95.

My mother-in-law has begun to slow down and is dealing with an arthritic knee. Her father-in-law died this year  and they’ve been driving three hours a day to help care for his mom (my mother-in-law’s mom-in-law). They’re worried about how things will go in the future, what care she’ll need, how they’ll manage.

They face the same questions I faced–what do we do about mom?

Do we place her in a care facility? Does she live with family?

But they (my father-in-law has his  2 siblings) also have different questions:

Are any of us capable of caring for her–long-term? 

My father-in-law just retired. He was planning on golfing, driving to see all the kids and grandkids, and instead, he’s caregiving.

Guess you just can’t get away from it. The best you can do is look a bit ahead and make a semi-plan.

And as we age, caregiving is even more difficult–physically in particular.

Families have new questions to ask. New plans to make. Grab the moments of fun now and not wait for some “golden” day for that dream trip or to think you’ll sail into your senior years in the glow of a sensual–just-two-love-birds sunset.

My plan is to really, really spoil my grandchildren–afterall, they’ll be young enough to care for me. That, and live big/love hard–now.

~Carol D. O’Dell

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

 available on Amazon and in most bookstores

www.mothering-mother.com

www.kunati.com

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Today, I’ll continue my conversation with author, Linda Merlino.

Her book, Belly of the Whale will be released in April and is about a woman who finds that cancer isn’t the worst thing that can happen to a person.

Hudson Catalina finds herself a hostage of a killer, held in a gas station as violence unfolds. She thought cancer would kill her. Then, a bullet. And then, she decided to fight.  

I’d pick this book up with this premise in a heartbeat.

So, what’s it got to do with caregiving? Death and dying? Everything.

It’s just like life to throw one catastrophe at us and then wallop us from the side with another. Only then, after our self-wallowing whining and being knocked around a few times do we find that we get mad, and get up. Psychologists say humans (and most animals) have a fight or flight mechanism. I say we also have a fight or die one too.  

I know if I get pushed down (and I have, many times), I collapse, cry, grow quiet, too quiet, doubt myself, and then….I get mad. I get back up. I’ve seen myself do this in an almost out of body experience (observation–observing that I’m observing) I hate to see me cower. God, I hate that. I hate bullies, but man, do they teach good lessons.

Where I got this from, I don’t know. I’ve always been stubborn—and rebellious.

What’s your default? How can you use your “bad” qualities for the good? I’ve learned I have to, they’re like a good old pack of dogs always laying under my feet and following me wherever I go. Faithful to a fault. I have to put my “bad side” to work–give it something to do. Make it play fetch.

Even before I was adopted, I’ve been told that my grandmother would tell me the opposite thing to do in order to get me to do the thing she wanted. And I was only four!  Now, I try to use it for the good.  

Linda’s character, Hudson, has gone into “the belly of the whale,” the dark night of the soul, the fear of death and suffering…and that got me wondering…

where does the “will to live” come from?  

Some caregivers are passive. They let life happen to them, and then caregivingcame along and “just happened.” But many times, caregiving will cause us to face our own fears and reflect on our own lives.  

Some people with Alzheimer’s, Parkinson’s, or cancer (not to mention ALS, MS, and other debilitating diseases) succumb to the sorrow and seemingly give up. Others fight like hell. Why? Personality? Life events? What causes a person to get to the point to either lay down—or stand up—to life?   So I asked Linda:  

Q: When it comes to life and death, how much do you feel is “will” or just a person’s time to go? A: You can will things to happen.  I believe that; even death.  I believe also, that there is a time and a purpose in all of what life brings to us.  We do not know when we will run out of summers.  In “Belly of the Whale”, Hudson Catalina feels her time to go is imminent.  The beast she’s been running away from since she was fourteen has finally caught up with her and although she appeared to be fighting the fight, at heart, she probably never believed she would win against cancer. People of extraordinary faith, whether it is old time religion or simple spirituality, can defy the odds.  Even if death finds them through illness, accident or tragedy, rather than old age, these faith-driven folk teach us all a lesson.  

Here is an excerpt from “Belly of the Whale”: 

Ruby Desmond to Hudson Catalina “I’m a woman of great faith,” Ruby said. 

“When Charlie passed, I relied on my belief in God to help me through those long days and even longer nights.” “Weren’t you angry?” I asked her. 

“His dying just like your Daddy is like my mother and I dying of breast cancer.” 

First off, child, you are not dead yet; and second, things don’t go according to our plan, no way, no how.” 

Ruby made her point by thrusting her head back into her rocker and pushing off hard on the runners. 

“I’m not unfeeling to your situation, child, but the truth is you have already decided what is going to happen and that’s plain crazy.  God isn’t to blame for these unfortunate times in our lives.” 

“Who is then?” I asked. 

“Just like I said before, I never get the answers I want when I ask.” 

She made a circle with her fingers in the air. 

 “If you’re asking me, which you are, I’ll tell you that life’s a circle and we go around like the spokes on a wheel.  Sometimes we’re happy, our faces in the light, and sometimes the wheel thrusts us into harsh places of darkness and despair.  But we have to believe that it keeps going around, back into the light.  Never give up hope.”   

Q: What was the bud or seed of this story? 

A: The interesting thing is that the seed or bud of this story was not about Hudson Catalina or about breast cancer.  In fact, the very seed of this book was centered on the character, Willy Wu.  The original title of the novel was “Willy Wu”.  At the time that I began putting words to paper I was re-reading some of Joseph Campbell’s works and I was taken once again with his concept of heroes.  Coupled with this and the desire to write a story about a character like Willy, who is challenged physically, mentally and verbally, I wondered how much Willy processed and if he could transcend his stereotyping and be a hero. 

Part II of “Belly of the Whale” begins with: “Heroes are the most unassuming, and the most improbable of individuals.”Through the filter system of publishing Willy became autistic.

 In the early stages I hesitated to tag Willy.  I felt that the community of his peers might be offended by the mention of a more defined diagnosis.  Now that the story is completed I am comfortable with Willy being autistic.  He rises above his handicaps and fulfills my original intention.   

The story evolved and Hudson Catalina became the main character leaving Willy to be a hero in the true sense.  Hudson must face her fears, but Willy is not capable of fear.  He trusts everyone.  He is innocent, he is pure, he knows about heroes. 

More tomorrow. This is just too good to gorge on all at one time. Savor.

~Carol D. O’Dell

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

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You’ve been caregiving awhile–

and you have to admit, you’re good at it.

But how would you know?

What is an UBER-Caregiver anyway?

In this context, I mean “over the top, more than necessary, to excess”

See if any of these fit you:

  • You take pride in the fact that you can maneuver your way around the Medicare/Medicaid site.
  • You know all the medical/caregiver lingo and even use the acronyms.
  • You talk like you’re a pharmacist  and try to diagnose everyone else in your life.  
  • Your loved one’s doctors ask you’ve ever considered going into medicine.
  • You’re the unofficial leader of your local support group.
  • Your loved one is always clean and matching, and people comment what good care you give.
  • Your loved one’s daily regime is more planned and detailed than a wartime tactical maneuver.
  • You’ve started introducing yourself as your loved one’s caregiver–not their son, daughter, spouse.
  • Your friends and family say they’d like you to be their caregiver when the time comes….

I know your defenses (my defenses)

You have to get good at this. You can’t help it, it comes with the territory. What else do you have to do? You might as well do it right if you’re going to bother at all.

It fills you with a sense of pride. And rightly so. Only…

Somewhere deep inside you there’s a small voice that says, “this isn’t what/who you thought you’d be when you grew up.”

You had other plans.

There are other things you’re good at to.

How did this happen?

Uber-caregiving isn’t all bad. Your loved one certainly benefits. They’re taken care of well–whether they like it or want it or not.

It’s the flip-side of Uber-Parenting and I’m guessing here, but I think it comes with perfectionist tendencies, wanting to please, and a tenacious spirit that loves to learn and be good at things.

Have you ever seen the mother who fusses with her toddler too much?

She leaps every time they take a tumble. She says they’re hot and bundles them up–too much–their little cheeks are flushed and they look pudgy in their three layers. She’s a know-it-all that drives all the other parents bonkers. She thinks her kid is brilliant…and therefore, by default, yours isn’t…

Same thing, honey. It’s irritating as hell.  

And while it’s good to be good at what you do, you might have gotten carried away.

Why? For me, I think I was bored. My mind and body is active and is always searching for something to challenge it and keep it engaged–for meaning and purpose. And the only thing that seemed available at the time was caregiving. Alzheimer’s, heart disease, and Parkinson’s had become my life. I liked the challenge. I liked learning how to handle all this. It made me feel smart–and needed.

The only thing is, it’s not all I’m meant to be. I’ve always been a writer/communicator/artist. That’s who I am at my core.

Why is Uber-Caregiving Not So Good For You?

You might be driving your loved one nuts.

You might be driving away help.

You might be isolating yourself and not know it.

You might be running from your demons/avoiding personal soul/heart work.

It might not be as fulfilling as you try and tell yourself it is.

And one thing I know for sure.

You’ll eventually be out of a job.

Our elderly, our infirmed loved ones will eventually die.

I know you don’t want to hear that word. You don’t want to think about it. Part of you believes that if you’re good enough, give them the right meds, find the right doctor, enroll in the right treatment plan…that they won’t die. You’ll have more time.

You might (might) buy them–and you a little time, but people die. Death, dying, grieving are all a part of this experience. We avoid it as long as we can, but eventually, we have to look at it.

I say that with a gentle voice and tender hand. You can’t always feels those things across the abyss of the Internet, but I mean that with utmost kindness.

 

Your loved one will pass away, and your life must go on.

What will you do then? After years of caregiving. Years of pouring your heart and soul and energy–and money into all that caregiving asks and seems to demand.

And then your life changes. It’s over. In one day. And you walk around in a blur. Part of you is relieved. You’re exhausted, you didn’t even know how exhausted you were, but another part–a bigger part is completely and utterly lost.

I tell you this because I know. That’s how I felt after my mom passed away after three years of full-time caregiving and 15 years of being her only child, her daugher, and her caregiver coordinator. That’s a long time. Long enough for that identity to form.

When I started writing Mothering Mother, I didn’t realize I would become an uber-caregiver, and I certainly didn’t do it all right. I wasn’t a perfectionist, but at times, I was a know-it-all because caregiving was all that I felt like I was thinking, doing, being. Writing about my mother’s actual passing allowed me to look beyond that point, to deal with my guilt and grief–and begin to slowly build my life again. I did because I didn’t want anyone else to have to face it alone.

I ask you, look past today. Look past that moment of death. Look past that year of grieving, and look into your own future.

Who will you be?

What will you do?

We’ll talk more tomorrow.

~Carol D. O’Dell

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

Kunati Publishing

www.mothering-mother.com

 

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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

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I was featured on Sandy Springs Radio, AM 1620, Atlanta area station. (http://www.radiosandysprings.com/passions.php) and interviewed by host Bernard Kearse on his radio program, Following Your Passions.

Mr.Kearse interviews people from all walks of life who have found passion in who they are and what they do.  

What makes a passionate caregiver?

A passionate caregiver is someone who is still engaged–in caring for their loved one and caring for themselves.

A passionate caregiver asks for help.

A passionate caregiver knows that they need allies. They incorporate their friends, extended family, church, and community into their lives.

A passionate caregiver gets angry–and knows how to use it in constructive ways.

A passionate caregiver gets frustrated at times–they might cry, yell or demand that their loved one’s needs are attended to.

A passionate caregiver refuses to be isolated. They rely on their friends, spouses, and others to keep them in balance.

A passionate caregiver gets out, reaches out, and looks outward–knowing their lives must go on past caregiving.

A passionate caregiver laughs at the craziness, chaos, and absurdity that comes with the challenges of dealing with such debilitating diseases. They keep it in perspective and finds the ironies of life.

A passionate caregiver is present–even for all the scary, nasty, terrifying parts of life. They dig in and face the dark, knowing they will survive. Alzheimer’s, Parkinson’s, dementia, cancer, heart disease are all faced with tenderness  and when needed, tough love.

A passionate caregiver chooses dignity, grace, and mercy–for themselves and others.

~Carol D. O’Dell

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

Kunati Publishing

available on Amazon and in most bookstores

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