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Archive for the ‘inspirational’ Category

Tomorrow, I’ll be speaking with the Parkinson’s Foundation of Manitoba Canada. We’ll gather in Winnipeg and talk about what it’s like to be on this journey. Husbands, wives, those with Parkinson’s, sons and daughters–we’ll huddle in a room, learn a few things, introduce ourselves, and crack a few jokes.

Yes, that’s what I said. Jokes. Because one thing I know is that one weapon you need to fight the fatigue and frustration is to be able to make a joke out of anything, especially the things that bug us, confound us, and are generally considered off limits. And let’s face it–life is funnier when you have someone to share it with.

There will be close to 200 caregivers tomorrow gathered in one room–and it’s my “job” to give them hope, to give them a few minutes of feeling like they’re part of a tribe–they’re in the “in” crowd. Caregiving is cool because it’s a community of people who care, really care.

As an author and speaker it’s my job to point out the ridiculous, the hilarious, the over-the-top so insane moments that come with Parkinson’s. And as I watch these tired souls nod, chuckle, nudge each other, and smile…I feel like I did something meaningful with my own experience.

I’m so blessed to have had such a difficult mother! (Did that just come out of my mouth?) I’m so glad she was a pistol–because she taught me stand up for my self, and at times, to stand against her. Our difference made me define myself, and even the the hurts we inflicted on each other are now a part of our fabric–and they’re part of what I share and weave into my stories.

If I didn’t tell the truth, these caregivers would know. It would be like trying to lie to a front line sharpshooter about the realities of war. I’d be shot on the spot. I think they call this friendly fire.

I’ll share about our numerous mother-daughter fights. How she told me how to drive, how to cook, how to dress, how to make her bed. When she’d get really bossy I used to say that a small country was missing their dictator. We learned how to deal with the tremors, the pauses, the hiccups of “P.D.” as my mother called it–with humor, patience, and grace–depending on what was needed at the time. 

I’ll even go up to the edge of decorum and dangle my toes over–share how I thought of rigging up a large spotlight in the corner of the room so she could “go to the light.” And then I’ll take them where they’re afraid to go alone. We’ll  talk a little about their own lives, their own dreams-on-hold, and what it will be like later–after their loved one is no longer on this earth–how they’ll love and remember them and incorporate them into their being–and figure out who they are and where they are once again. 

And I’ll encourage them to look around–at their “peop’s.” This room is their tribe. There’s someone here they could email or call. There’s someone here who knows a thing or two about their particular current issue–and how we help each other at our points of need.

That’s the power of community. As isolating as caregiving is, it also makes us vulnerable–and that’s a good thing. We meet, come to gether only where our lives intersect.   

I know how tired you are. I know you don’t consider yourself good company.

But you need people–and they need you. You can start giving back now (what, you didn’t realize this was part of the bargain?) There are new caregivers every day. They’re your neighbors, your cousins, your friends, and they need your wisdom, advice, and your “here’s what not to do” list. When life presents you an opportunity (and it will), I hope your ears will perk up and you’ll remember this blog, and you’ll know it’s time.

Finding your tribe means you are willing to step into the circle.

~Carol O’Dell

Author, Mothering Mother

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Do you feel this is the last Christmas with your spouse or parent?

Perhaps you’re looking at a  cancer diagnosis, or you’re at the end stages of Alzheimer’s or heart disease.

This can put a cloud over the festivities. Everything drips with meaning. You’re standing in Wal Mart and feel weepy.

Or…you can’t seem to wedge your butt off the couch. Flipping channels has somehow become  your life.

 

You don’t know it, but this is the face of grief.

We start grieving long before death enters the picture.

The word grief means Deep mental anguish, as that arising from bereavement.

 

So what do you do if you feel like this is your last Christmas together?
Do exactly what you feel like doing. Trust your gut, your heart, your intuition, your spirit…whatever you want to call it.
If you need to flip channels, then give in and flip. Are you missing something significant?
Could you really grasp “significant” right now? Even if it hit you on the side of the head?
I really do believe that after about 3 days, either you’d get sick of the same old “As Seen on TV” merchandise–or, you’d get carpel tunnel and you’d have to quit anyway. Be willing to give in and see where it takes you. I’ve learned that the best way to get over something  is sometimes to give in.
Even scientists have observed  this–they find that if a child is exposed to copious amounts of pizza, chips, cookies, and apples–they’ll eventually get the junk food crave out of their system and willingly choose the apple.
Grief isn’t something you can fight. Nor should you.
It’s natural, and for the most part, healthy.
But if you can, try not to jump time–don’t go to the future–to the time your loved one dies. Be present. That season isn’t here yet.
Also realize  that if you’ve been caregiving for several years, you may have hit the caregiver’swall–you may feel numb, exhausted, and zombie-llike.
Trust the process. If you go too far, you’ll know it–everyone else will know it.
If you do have the ability to rationalize and feel, then cherish this season. Don’t dread it or push it away.
Don’t make everything drip with meaning. That can get exhausting and annoying.
Your loved one won’t appreciate being inthe spotlight every second. Follow the moment.
When something touching, seweet, or poignant happens, you have a better  chance of recognizing it if you are ‘gently” alert.
If you get a few photographs or can jot down a few thoughts, then you’ll have something you can treasure for years.
If you can’t–or don’t–then let it go. I promise you, all you need is one moment–one glance, one gentle touch of the hand, one brush of the hair–somethig will rise to the top. You will have your moment. You will find the sweetness in the season. Just let it happen.
Our relationships–and the holidays–aren’t to be forced. 
Trust that this holiday will give you a gift–at the most unexpected turn.
~Carol O’Dell, and hope you’ll check out my book, Mothering Mother

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Let’s face it–there’s just too much to do during the holiday season–and if you’re caregiving or a sandwich gen-er–you’re really feeling it by now. 

Sure, it’s all good–the tree, the gifts, the home baked cookies, the parties, the family gatherings, the lights…

Every one of those holiday components can be truly wonderful–the fresh smell of the tree, the wonder of what’s in that big, sparkly-wrapped box…

But then the proverbial “soup pot” boils over and the cookies burn, you don’t want to go to one more red-sweater party (or there are no parties and you feel empty), and the whipped cream on top of the hot chocolate–someone says/does something really ugly…I mean you feel like your head’s going to explode you’re so mad.

Not exactly what you had planned, huh?

It’s all too much.

If you want a good laugh, the Thanksgiving segment of Boston Legal will make you snicker (you can watch it online).

Around the holiday table is Denny Crane, (played by William Shatner) who has Alzheimer’s, so he”s always good for a few inappropriate remarks, Alan Shore, his best friend (played by James Spader--he could read to me alll night) decides to deliver a lawyerly rampage on American politics…and the other players all pitch in their own prejudices, stereotypes, and funny banter that will make you WISH your family was this witty in their all too familiar digs. 

It all winds up (after a really big fight) in the kitchen with Denny thoroughly confused. Christmas, time, memories, love–it’s all too much. The small moment winds up being a long hug between two old friends.

But of course, you can’t just leave it like that–on a sweet note–no!

Just like at your house, (or mine)–someone has to take it too far and someone really does get their feelings hurt.

It happens. We’re human, and no one, no one can push that exact right button to make you go off than someone who shares your same DNA.

My other Christmas funny movie is the classic “Christmas Vacation” with Chevy Chase. We still kid about his aunt wrapping up the cat and trying to give it as a gift–and then she sings the National Anthem instead of offering a blessing. My mother actually did that once–so we all went with it–hands on our hearts and belted out our national pride.

All you can do is spike the egg nog and go with it. Christmas and the holidays can bring out the beast in all of us. But if we look really close and think small, we might find something of value

My only advice is survive. Any way you can. Just envision that Last of the Mohican’s guy about to jump into the waterfall and telling the love of his life. “No matter what, I will find you. Survive!” This is what I tell myself when I’m really stressed. (FYI guys, All and I do mean ALL girls love that scene).

Choose one thing–whether it’s riding around looking at lights or baking Italian wedding cookies from your great aunt Sophia’s recipe–pick one thing that means Christmas to you–and do it. Don’t get hung up on what doesn’t get done, and what gets screwed up.

The perfect Christmas/Chanukah/holiday is  really more than the human race is capable of.

Zero in on what is most sacred, most precious to  you. That’s all that matters.

One small thing. 

For me, it’s going to hear the Edward Water’s choir sing. They’re amazing, and sitting in a tiny chapel with warm wood walls and stained glass windows while 20+ college students belt out the Carols with soul and spice is the perfect way for me to celebrate the season. I attended last year, and tears streamed down my face–I clapped and sang and felt more in touch with the season that I had in years.

Each of us have to find our own way, what touches our heart and lifts our spirits.

If you’re caregiving, think really small. Hot tea and a cookie while sitting in front of a fire might be just right.

~Carol O’Dell, author of Motheirng Mother

Family Advisor at Caring.com

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People are about as happy as they make up their minds to be. ~Abraham Lincoln

I find it pretty amazing that this quote is attributed to Abraham Lincoln.

He didn’t exactly have a cushy life.

His mother died when he was nine, and although his family could barely survive, young Lincoln gave up hunting after watching a turkey suffer after he shot the bird(the bird thing is a side note, but I found it interesting).

He didn’t just become president over night–he was a lawyer, then tried for congress (twice) but was defeated by Stephen Douglas–over the issue of abolition.

He married Mary Todd, and three of their four children would die before adulthood. This left Mary, who already suffered with depression, even more mentally unstable. As Abraham Lincoln’s life began to evolve more and more around politics, his marriage suffered.

President Lincoln was under great stress to try to hold our country together in perhaps its most challenging time. He did so, but with great personal sacrifice. He was assasinated when he as only 56 years old.

According to today’s standards of what qualifies as a “good life,” Abraham Lincoln’s journey would not be considered an easy one–then or now.

(Other great quotes by Lincoln )

And yet, we all owe him a great debt. He held America together and changed the course of  history. His words and example still inspire us today.

He doesn’t exactly seem like a person who would focus much on the meaning of happiness–but who better than someone who knew, but did not give into sadness/

Happiness is a lot about choice. It’s a state of mind and way of looking at things. It doesn’t change the facts. If your mom has Alzheimer’s, if your dad fell and broke his hip, that’s a fact–but how you deal with it–that’s up to you.

There were many times in Mr. Lincoln’s  life when I’m sure he had to choose to simply go on, breathe in and out, and keep on doing the task at hand.  Sometimes happy isn’t about being happy, but choosing not to be unhappy (aka miserable).  Caregivers know this well.

According to the Princeton online dictionary, happiness  means:

  • state of well-being characterized by emotions ranging from contentment to intense joy
  • emotions experienced when in a state of well-being

Where did the word  “happy” come from?

It dates back to 1340, from the waord, “hap,” which was connected to chance or fortune.

(From  Etymology.com)
1340, “lucky,” from hap “chance, fortune” (see haphazard), sense of “very glad” first recorded c.1390. Ousted O.E. eadig (from ead “wealth, riches”) and gesælig, which has become silly. O.E. bliðe “happy” survives as blithe. From Gk. to Ir., a great majority of the European words for “happy” at first meant “lucky.” An exception is Welsh, where the word used first meant “wise.” Used in World War II and after as a suffix (e.g. bomb-happy, flak-happy) expressing “dazed or frazzled from stress.” Happiness is first recorded 1530. Happy hour“early evening period of discount drinks and free hors-d’oeuvres at a bar” is first recorded 1961. Happy-go-lucky is from 1672. Happy as a clam (1636) was originally happy as a clam in the mud at high tide, when it can’t be dug up and eaten.

How does it relate to caregiving?

Much of caregiving doesn’t fall under the category of “happy.” While parts might be necessary, needed, serve a purpose, and at times, appreciated–as a caregiver  I found that I had to fight or choose to be happy. Let me tell you, I know how it feels to push that rock up hill. There were some days when a Volkswagen Bug full of 50 clowns wouldn’t have gotten my mother to crack a smile! Caregiving taught me how little I could control, and writing Mothering Mother helped me to reflect on my journey.

I had to look for the good, the funny, the crazy and ironic. I had to let go, give up, give in, and simply trust. So much was so way beyond anything I could have prepared for that it was in away, left up to luck, to chance–to hope. And maybe that’s where the happy part comes in. When you can’t control it, you might as well choose to see the good, any good that comes your way.

The smallest of good/happy moments could make my day–a cardinal dipping past my window–I love how they fly–dip, dip, dip–their bright wings in defiance of a winter morning.

Bottom line, if Abe Lincoln can choose to be happy, then so can I.

Happy for no reason. Let luck and chance blow in like a surprising summer rain. Trust that it’s all meant for the good.

Right now, with all the economic challenges we face individually and collectively, I feel like I don’t have a choice–either crawl in the bed and pull up the covers (indefinitely), or keep an eye out for bright red birds and all the amazing small wonders that surround us.

Carol D. O’Dell

Author of Mothering Mother, available on Kindle

Family Advisor at Caring.com

www.caroldodell.com

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I was at a friend’s house last week. She has cancer is awaiting a double mastectomy. Her family and friends have flocked to her side–like birds heading South and all landing at the same lake–cars lined her driveway all hours of the day and night. She is surrounded, and I’m glad for her. I know she has a network–she is respected, appreciated, and dearly loved.

But that doesn’t mean someone won’t make an ass out of themselves.

I don’t mean it in a “I would never say something that stupid” way because trust me,  I’ve been known to say a few blunders in my day/ But I watched and listened as someone said,

“If this were going to happen to anyone, then God sure did pick a strong person because you have so much faith–it’s amazing.”

I wanted to smack that person on the side of the head like they do in those V-8 commercials.

 

I know what this person meant, but faith or lack of faith has little to do with the situation. You don’t get cancer because you’re strong enough to handle it. If that’s the case, then sign me up with the punies, wusses, and scaredy-cats while I duck all the terrible life bombs that get hurled at those “strong people.” Still, my heart went out to this well-meaning person. We’ve all said less than helpful/cheerful things at just the wrong time.

 

So, I’ve compiled a “What Not to Say” List:

  • God knew you could handle it. (God ((and I don’t mean it, really)) was wrong)
  • You’re so strong. (If I’m weak does that mean I don’t have to go through this?)
  • Your baby/husband/child was so special that God took him (God gets blamed for a lot, apparently–no wonder we have issues with “Him.”
  • I could never do what you do. (I had no choice)
  • You’ll find love again. (Back off–I’m not ready to go there)
  • It’s better this way. (Is it?)
  • At least they’re out of pain. (But I’m not)
  • He/She had a good long life–it was time. (Who gets to be the judge of that?)
  • If there’s anything I can do for you, just call. (Figure out what needs doing and do it.

So What Do You Say?

  • Sometimes nothing. Just a hello, maybe a gentle smile or hug–play it by ear and see if they’ve been bombarded all day.
  • If it’s appropriate, say, ‘I’m sorry that Bill died.” Don’t be afraid of the word, “died.” Or go with a simple, “I’m sorry for your loss.”
  • Let the bring up their loved one. Some people just can’t talk about it for awhile and others find it cathartic.
  • Send a card–tell them you’re thinking of them, love them, holding them in your thoughts–something about them. If you’re close and want to be more personal, then share a good memory–something in writing they’ll be able to keep.
  • Be sensitive. If there’s something you seeor they need, or find difficult doing, then volunteer to help them out–clean gutters, help them take items to the Goodwill, ride with them on errands–every one has something that’s hard for them to do alone.
  • Be there in the weeks and months to follow–grieving is a long process–and even though they have to go on with their lives, return to work and activities doesn’t mean they’re “over  it.”

Finally, be patient. Your friend/loved one/co-worker who has experienced a death may act erratic at times. They may be testy, nervous, anxious one minute–only to be followed by teary, hot-headed or depressed the next. I heard one person describe grief as if they’re wearing their nerve endings on the inside-out. Don’t take their mood swings personal. Listen well and be their steady companion through this difficult journey.

 

And if you screw up and say something dumb, just apologize. A quick, “Hey, that didn’t come out right” will be quickly forgiven. And forgive yourself. It’s more important to try and flub, than to avoid.

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Below is an excerpt from my book, Mothering Mother. I wrote it during my caregiving years, observing that as my mother contined to age, she lost her ability to filter her thoughts or hide her fears.

It got me thinking about where I am now…and who I will become.

What concerns will linger and play and replay like a needle stuck on a record?

What judgements will slip out when I am too tired or too sick to guard them?

I’m determined to do a little “soul keeping” every day.

From Part I of Mothering Mother.

I have this theory; I’ve decided Mother is like concentrated orange juice. We all are, really. We start out potent, tart and pure—right off the tree. When we’re babies we don’t care if you like us or if we’re pleasing you. We are uncontaminated, unfiltered, and unadorned, with no knowledge of what we should or should not do. In this concentrated version, we are a wild DNA cocktail of mama and daddy, ancestors and humanity, naked and wordless.

Instincts—eating, drinking and bodily functions—drive us. We search for satisfactory ways to please ourselves. We propel toward our uncertain futures with blind self-adoration, and for those first few months, maybe a year or two, we are our life in its most concentrated form.

During the next seven or eight decades we become diluted, filled up with waterous thoughts, language, expectations, and experiences. We gain the ability to somewhat satisfy ourselves in every arena from sex to career. Our other goal is to avoid pain as much as possible. We wail at the slightest bit of emotional, spiritual or physical discomfort. We become bloated, self-aggrandized, and then, when we finally figure out how to make things go our way—most of the time—life takes its final turn, and we begin to deflate.

As our mates leave us, and our friends and family trickle into nursing homes or relatives’ homes, we realize that all we’ve built up is beginning to dissolve. We lose our water and distill, leaving concentrated versions of ourselves, only now we have memories, fears, hates and hurts thrown into the concoction.

Mother is at this final stage during which we all reduce to our own cosmic juice and revert back to some pretty potent pulp. She is no longer interested in betterment, learning or growing. She is tart, almost bitter, and that makes it hard to want to spend time with her. She doesn’t seem to have the ability or inclination to be nice. It’s all about her now, and it doesn’t matter whether I have a hangnail or a tumor; it wouldn’t register.

Whatever Mother has accumulated along the way is now strong and unpleasant to those of us who live in a watered-down world. I see the things that remain. She can recall a moment of jealousy or disappointment from forty years ago and gnaw on it for days. Most of the actual events, people, and moments she once held so tightly are now forgotten.

I now understand something: we are what we are; the only way we can add to ourselves is by experiencing something powerful enough to alter our belief system. If Mother were naturally trusting, she would continue to trust. But since fear has become so entwined, it’s now a part of her concentrated self and must play itself out to the end.

I’m Carol O’Dell.

Got a caregiving question? Email me at Caring.com/family advisor and I’ll do my best to shed some insight on your situation–and your question might help others.

 

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Caregiving has circled back around my life again.

I leave tomorrow to help a friend through a difficult time in her life–a double mastectomy. She’s as close and as loved as a sister and I feel as if I’ve been kicked in the gut. We raised our kids together. Our kitchens were at eachother’s disposal. She could use her key, come in, borrow milk or an egg, leave a note, and it was fine. Her kids were (and are) like my own. It didn’t matter how dirty eachother’s houses were, it was never met with judgement. She’s one of the most phenomenal, giving, most ethical women I’ve ever had the privilege to know.

And now I find myself back at square one. I want to scream, “I don’t know how to do this!” Sure, I’ve got experience with caregiving, but each time, it’s different. My friend isn’t elderly. This isn’t supposed to happen, yet we know it does.
How do I give care to my friend? Real care, real love, what she needs.

Is caregiving someone with breast cancer different than Alzheimer’s or Parkinson’s?

What do I do to comfort her?

What do I say?

I know caregiving isn’t just a checklist.

I’m in the unique role of being part of her support system. I line up somewhere in the line after husband, mother, daughter, sons, church friends, work friends…but it will take all  of us to get through this.

How do I meld and mesh and offer tenderness and encouragement to not only her, but those who love her so dearly?

I think of the logistics–sponge baths, meds, helping a person in and out of bed after surgery, those first few sips of ice chips or juice–I know this routine of bad hospital coffee and orange vinyl chairs.

But there’s so much more. She’s got all the spiritual, emotional, marriage/relationship, mom/relationship, who am I, how did this happen, what’s happening next to deal with–and that’s the stuff I hope I can at least be her sounding board for.  

I’m going up a few days early to help her prepare. We’ll run errands, go for a walk, sit and have hot tea, perhaps to go church to pray–whatever she needs.

I know she needs silence. A long hug. To smile.

Maybe a few easy laughs between friends.

She needs to talk when she feels like it and say those scary things you can’t say to your spouse or your kids because you want and need to shield them from as much ugliness as possible. If she needs to scream we’ll scream. If she can’t sleep, we’ll watch old movies or just sit.

I never wanted to be here again. Not like this. But I’m also not naive enough to think it (caregiving) won’t circle around again and again. And I don’t know if I want it to get “easy.” Each time, we have to muddle our way through. Love big. Love hard.

What I  do know is just to be there. Caregiving, family, friend…it starts with that.

Carol O’Dell

Mothering Mother 

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