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Posts Tagged ‘Alzheimer’s’

Seth Rogen spoke to the Senate committee on behalf of the over seven million Americans who suffer with Alzheimer’s–five times as many people who suffer from AIDS in America–and yet all but two senators left. Why? Maybe they stepped out because Seth is perceived as a celebrity, but he wasn’t there for that reason. He spoke out for Alzheimer’s because this disease has hit his  family–his mother-in-law.
Maybe the problem is that Alzheimer’s isn’t sexy. It’s scary to most people. It turns our loved ones into strangers. It’s unpredictable. Even former President Regan was hidden away. We didn’t want  to see him “like that,” all undignified.

I too, have seen Alzheimer’s up close and intensely personal. It scared me, too, I won’t deny. But then I just got used to it. Not that it got any easier–the outbursts, the vacant eyes, the chaos and destruction that can ensue, the absolutely frustrating issues with the medical community and their lack of understanding what families are facing, the lack of support that leaves caregivers so often alone physically and financially as they try to do more than is humanly possible, the deep ache of losing a loved one drop by drop and not being able to comfort them because this disease won’t let you in…I know it well. My adoptive mother, who had Alzheimer’s and Parkinson’s, spent her last almost two years in our home and I held her as she left this  earth.

So Seth,thank you.

Thank you for your crass humor that gives us permission to laugh at ourselves.

Thank you for daring to call the senators out and ask why they left, why this didn’t seem important enough to stick around for–even if they didn’t agree with the message or the messenger it would seem that there shouldn’t be Senate hearings if nobody is going to listen.

Thank you, Seth. I know you’re just an actor, that you get paid to entertain, but for one day you hoped to use your celebrity-dom to talk about  something that a wholelotta us are facing in our families, with our mothers, mother-in-laws, grandparents, spouses and partners. I say we get used to messy. We educate others by sharing the nitty gritty. We speak out and speak out some more. We help each other through this.

Maybe you did more good because they did not listen–that it made the news in a big way–so now more people are listening.

You done good, Seth Rogen. You done good.

http://abcnews.go.com/Entertainment/video/seth-rogans-impassioned-funny-plea-alzheimers-awareness-22690205

 

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YES!

Sleep and laughter are perhaps the most healing gifts the good Lord gave us–and it’s the first to go when caregiver stress mounts an assault on your life. You have to fight to protect these two gifts. You have to buy a lock for your bedroom door, take out the TV, turn off your cell phone and not take it into the bedroom with you, refuse to fall for the drama and schemes that your loved ones pull to get you out of bed. It’s not going to be easy….they’re tricksy!

My mother treated the night like we were at the Indy 500. The later it got, the more riled up she got! She’d turn on the lights, bang the cabinet doors, call my name and knock on the door. I had to show her that I wasn’t going to cater to her 24/7. I wish I could tell you that this worked. My mom had Alzheimer’s and sundowners and over time, I had no choice but to get up and deal with the chaos. I had to practically strip her room bare (she seemed to gain super-human strength in the middle of the night and could overturn her nightstand, rip all of her clothes off of hangers and empty her drawers into a pile in the middle of the floor).

If you’re reading this and your loved one isn’t doing these things (yet) this probably scares you. All I can say is that Alzheimer’s takes you and your loved one to some pretty bizarre places. You’ll experience things you never even thought of! And yes, at times, it’s scary.

But at some point you stop being scared. They’re still your mama, your daddy. And caregiving makes you brave. It toughens you up. You face your monsters and you realize that you either stand up and take control or realize you’ll be bullied from here on out. So you deal. You get strong. You love and you hold your temper even when provoked and even when you don’t get any kindness back. You make tough decisions. You do what’s best.

And you laugh. You laugh so you won’t cry. You laugh and cry all in the same breath. You realize that life is precious, and sweetness still abounds, and that the crazy stuff might just be the good stuff. You laugh because none of it makes sense. You laugh so you can let go, so you can feel, so you can hope again.

So right now, look up a joke, or call the funniest person you know and tell them you need cheering up. Vent, share your crazy-awful, silly, you-would-never-believe-what-mama/daddy/husband/partner just said or did….You laugh because it’s the only antidote to grief or sorrow there is.

Laughter and sleep–ain’t nothin’ better…

Take both–or either–any way and any time you can get them.

~Carol O’Dell

Author, Mothering Mother, available on Amazon 

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We sat in the Ronald McDonald family room at Shands Children’s Hospital, sequestered for the day, waiting for the pediatric cardiologist to operate on my middle daughter’s 8 day old baby girl. All of my family gathered. We ached with worry, skittered around the edges of dread, squeezed hands and whispered prayers. We also laughed. We have that ability–to tease, to banter, to tell a familiar story, to find sweetness and humor wherever we are. All of us, together, getting through this wonderful and awful day, my daughters, son in-law and husband confined in such a small space, with so much at stake, and yet there we were, healing our own hearts.

I’ve been here before, with both parents, through back surgery, abdominal surgery, heart surgery, through kidney infections, Alzheimer’s and Parkinson’s. I’ve walked this too-familiar road, but never like this.

We drank nasty coffee, the TV on although none of us watched it, flipped through waiting room magazines, covered in blankets, our legs thrown over one another.  The hours dug in long and hard. We’d go through swells of fears and eddies of faith. Some of us took walks, others tried to nap. We played on iPads, shared apps, got fast-food, the only choice we had.

We checked the time, then checked it again. In the lull of the afternoon, our daughter gets a call and steps into the hall. Moments later she flings open the door, her eyes and face already swollen from days of sorrow now blotched and red with fresh tears.

I sprung, arms open…oh god…

The surgery was over. It went well. Our tiny baby’s heart is repaired.

Relief poured up and out of us all. We became a geyser of tears and laughter, cheers and hugs.

If it weren’t for the break that humor gave us, the ability to siphon off some of the dread, the sharing of strength and solace, I don’t know how any of us would have made it through that day. For a caregiver, or family or friend of a caregiver, perhaps this is your greatest gift to give.

How does humor heal? New research has shown that it’s a natural pain reliever and does wonders for our immune system. Laughter is nature’s re-calibrator. Most of all, it’s contagious. And don’t worry about it being inappropriate to smile or laugh when life is at its worst. It’s a testament to the human spirit, to hold the “scary stuff” in one hand, and to balance it with joy, with sweetness, with laughter, in the other.

Even in the darkest of hours, laugh, tease, play and tell a story.

Humor heals. It makes the unbearable bearable. 

 

~Carol O’Dell

Author of Mothering Mother, available at Amazon and on Kindle

Resources:

http://psychcentral.com/blog/archives/2009/02/17/9-ways-that-humor-heals/

http://women.webmd.com/guide/give-your-body-boost-with-laughter

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Mike Wallace died April 7, 2012. His last few years were spent in the confusing and tangled maze of dementia. He was 93 and  was a newscaster most known for anchoring 60 Minutes and in the media for over six decades. He’s a prime example that if you live long enough, you just might get dementia or Alzheimer’s (Alzheimer’s is a type of dementia). Your odds increase exponentially with age. According to the Alzheimer’s Association your chances of developing Alzheimer’s doubles about every five years after age 65. After age 85, the risk reaches nearly 50 percent.

So our first challenge is to survive (or hopefully skip over) heart disease and cancer.

The major causes of death (in order) are: heart disease, cancer–both of these way out in the lead–lower respiratory infections, stroke, accidents, Alzheimer’s diabetes, flu and pneumonia, and self-harm (suicide).

As scary as Alzheimer’s is, heart disease and cancer take far more lives.

But Mike struggled with other demons–several years ago he shared that he struggled with depression and even attempted suicide. His honesty helped to shed light on depression, something millions face in silent shame. His life, like most of us, was a mixture of great highs and devastating lows. He was by all means a success, but he also lived through the death of his son (he had a falling accident in Greece when he was just 19), divorce and death of his wife, and several physical and mental challenges.

He was known as a fierce interviewer and was often referred to as an interrogator. He interviewed many of the world’s top and toughest leaders–and he never flinched.

I heard one of his colleagues say that he recently visited Mike and that he didn’t remember anything about 60 Minutes or what he had achieved as a broadcaster. In some ways, that’s sad, but I take it as a cautionary tale. Appreciate life now. Honor your journey. Celebrate it now. None of knows what tomorrow brings. While that sounds ominous, I don’t mean it to be, just that there aren’t any guarantees.

Life is today. What will you remember of your life? Who knows. The point is what you’re doing right now. Live it. Celebrate it.

Mike, tonight we celebrate you.

~Carol O’Dell

Author of Mothering Mother, available of Amazon 

Carol D. O’Dell’s Mothering Mother is a frank, unflinching true story of a daughter coping with the role reversal when her sick and aging mother moves in. Carol holds back nothing, offering up hilarious moments alongside the poingnant and the heartbreaking.
More than a memoir, Mothering Mother will inspire, entertain and hearten anyone facing the challenges of caregiving. Through it all she must find the time to escape and nurture her own body and soul while caring for her children, her mother, and her marriage.
Written with wit and sensitivity, Mothering Mother will help others survive–and thrive family life, including the caregiving experience. Mothering Mother was originally written from Carol’s daily journals and captures the reality of everything from driving issues, jealousy, doctor and medical care concerns,, hospice, grief, family dynamics and the joys and challenges found along the way. Mothering Mother is perfect for the sandwich generation, multi-generational households, and for those who care for loved ones and want to face each day with purpose, joy, and hope.

Resources:

http://www.cbsnews.com/8334-504803_162-57411009-10391709/a-look-back-at-some-memorable-mike-wallace-reports/?tag=cbsnewsMainColumnArea.1

http://www.google.com/hostednews/ap/article/ALeqM5jadeEUfpe-0vNVtCIM-ETbcl9o-w?docId=123741572d8e44cbb208611f8e3c6e06

http://www.alz.org/alzheimers_disease_causes_risk_factors.asp

http://www.cdc.gov/nchs/fastats/lcod.htm

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Being a home caregiver can get a bit claustrophobic. I cared for my mom in our home (she had Parkinson’s, heart disease and Alzheimer’s) the last two-plus years of her life. We had some home health aides but most of it was on me–24/7. I didn’t have the luxury of picking up my keys and purse and walking out of the house any time I felt like it, or even when I needed to. I grew jealous of my husband who got to leave for work and my kids who took off for school, dates, or part-time jobs. Jealousy is a nasty habit.

I used to sarcastically gripe that I was doing time in Sing-Sing and planning a prison escape (the humor aspect gave me some relief but it also allowed me to hear myself out loud). Some days everything in me wanted to run–and yet I had chosen to care for my mom. Why was this so horrible? She needed me and I was the only one.

Her insurance had said that Alzheimer’s didn’t require “skilled nursing care,” therefore didn’t cover it. I cried that day. I felt I had no way out. I didn’t want to take my mom to just any home and leave her there–I had to know she was cared for, and it seemed like I was the only one. What got to me was my lack of choice–which started with me.

And then I saw this beautiful photograph of a cloister. I’m not Catholic, but I’ve long admired a monk’s or nun’s dedication to live in a serene, dedicated environment. Cloisters are peaceful, safe, a haven in the midst of a chaotic world. It’s not that a monk or nun can’t leave–but most stay–the ones who chose this life of their own accord.

That’s when I decided to stop thinking of my life as serving a prison term. I have a good home, a lush yard, and I’m doing something I believe in. I looked around–at the books, the unfinished art projects, the exercise ball and treadmill, the stocked pantry–this isn’t a shabby place to be!

Just that shift re-centered me. I pulled books off the shelf I’ve owned for years but hadn’t got to read. I pulled out a painting I hadn’t finished and started following a couple of Food Channel chefs and gaining some culinary skills. I got out the binoculars and mom and I started watching a pair of cardinals raise their babies in a nearby nest (I’d have to hold the binoculars for her, but she caught a few glimpses).

This one shift–from prison to cloister–gave me a small measure of peace and a grateful heart (but I still snuck a spoon from the kitchen utensil drawer–in case I need to dig a tunnel).

~Carol O’Dell

Author of Mothering Mother, available on Kindle

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Being a full-time caregiver for several years and going the “last mile”has taught me a thing or two. I allowed (not just physically, but emotionally and spiritually) my mom to pass in our home and that has changed me. At the time, when I was in the thick of caregiving 24/7 and having to get up and play “prison guard” to my mom who had Parkinson’s (thank God because it slowed her down) and Alzheimer’s (which revved her up) and heart disease (just to throw another kink in the game plan), I spent most nights hitting my bed only occasionally as if it were a trampoline. In those grueling, full of worry, can’t make it better no matter what I do, nights and days I wondered at times if I would survive. I did, and I’m profoundly grateful for this life-changing, push me to the bitter edge experience. This gal learned a thing or two.

  • I learned not to be afraid of disease. Parkinson’s and Alzheimer’s I’ve seen what they can dish out, and it’s not pretty. They’re bad, don’t get me wrong, but I know the terrain and I find we’re most afraid of the unknown. I hope to figure out how to deal with whatever grenades life throws me.
  • I want to grab life with gusto. No guarantees in this world. So spend your money, take the trips, laugh with friends. Love big and hard and take risks–the good kind. Do it now. Arbor day, Chinese New Year’s–life’s for celebrating in big and little ways.
  • Stand up for myself–and for those I love. Caregiving comes with a zilliion big and little decisions. It’s easy to be bullied by the medical community, by other family members, by the “shoulds” in your head. I learned to stand up and stand behind my own decisions. It’s easier to blame others, and it takes a big girl (or a big guy) to have the guts to stick to my own convictions.
  • Love what is.Pain comes from the fight to make things a certain way, when we can’t let go of what was and walk across the bridge to what is. I thought my mom was back in my life in such a big way so we could “fix’ our relationship–work through our hurts and misplaced expectations. Wrong. I learned to love her, to love me, to love us–as is.
  • Laugh–or scream–but do something to release those runaway rollercoaster emotions. It’s time to stop holding it all in. Sorrow, guilt, frustration, resentment–it’s all there for a reason. They’re clues to help us know what’s going on in our heads and our hearts. But they’re toxic if they’re stuffed down and not allowed to breathe.
  • Do something I’m proud of. It’s time to leave the world a better place than I found it. I want to be known for something. For making a difference. I want some small sliver of the world changed for the better–because of me. I’ll let you know what sliver grabs my heartstrings next.
  • To stop caring what others think. Get a nose piercing, cut my hair down to the nubs, paint my front door purple and my mailbox lime green, dance under the stars, speak up and speak out when I see an injustice–that’s how I want to live now. That’s how I want to be remembered. Conformity sucks. In the words of Nelson Mandela (I believe he quoted it from Marianne Williamson), “Why are you trying to fit in–when you born to stand out?”
  • Nature heals. Nothing brought me more comfort than the sparkle of light on water, a bird’s wings whirring overhead, a breeze lifting my hair and reminding me to stop for a moment and take it all in. When sorrow slams into my chest I hope to remember to fall into the earth and ask it to take from me what I cannot bear alone.
  • To tell our stories. I wrote every day I cared for my mom. I wrote to stay alive. I wrote to figure out life. I wrote to remember our journey. Those journals became my book, Mothering Mother, but I wasn’t writing to get a book deal. I was writing to capture moments, to pick them up like a prism and look at each facet.
  • When death comes, I hope to dance my way to the next realm, not fight it. I hope I’ll have a bit of a heads up and let go of this world with a dash of grace. I hope I’ll take Chief  Sitting Bull’s words and shout to the universe, “It’s a good day to die!”

That’s what I’ve learned. Oh, I can still be shallow, petty, and mean-spirited at times. I still lose my way–but not for long. Caregiving has changed me. For the better.

~Carol O’Dell

Author of Mothering Mother, available on Kindle

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Caregiving my mom carried many ironic gifts. One is that I witness how love goes on–after death. My parent’s marriage lasted for 52 years. They faced the Great Depression, World War II (Daddy served for four years–in France, at the Battle of the Bulge, and then stayed to help rebuild the country), a miscarriage, an inability to have natural children, a two career household when that was quite unusual, and later–one illness after another, including daddy’s final battle with heart disease. What I realize now, looking back on this vast relationship landscape, was that love goes on. As a daughter and caregiver, I am profoundly grateful to have witnessed this.

My mother was a widow for 18 years. She would have never wanted that. She had no desire to marry again. Daddy was the love of her life–and vice versa. I was adopted when they were 54 and 58 years old. Established. They argued (petty but quite verbal) all the time.Both of them retired by the time I was in second grade, so they spent a lot of time together and with me.  They only have maybe two tiffs that seemed rather big the whole time I knew them. They were as polar opposite as can be. He was quiet, a bit melancholy. Deep. Thoughtful. She was loud, vivacious, and her moods were shall we say…unpredictable. And yet, they worked it out.

More than that, they adored each other. They complimented each other constantly.  They respected each other, bragged about each other, doted on each other. And yet, they were completely normal. She talked too much and that drove Daddy nuts. She micro managed his entire life down to picking out his daily underwear. Daddy was slow. Wouldn’t do anything he didn’t want to do. Stoic. Refused to follow the doctor’s orders. That infuriated my pull-pushing, dot every i, OCD mother. He escaped each day down to his chateau–the garage he built with his own hands. That’s what marriage is like.

Daddy did all he could to look out for my mother. He left her a home, a generous savings, health and life insurance. More than that, (which all of that became less valuable over time–almost 20 years has a way of gobbling up money and goods) he left us all a legacy.

I’m grateful that my mother, who fought Parkinson’s and at the end, Alzheimer’s/dementia didn’t forget her husband–not until maybe the last year. We talked of him every day. We kept his pictures out. We shared stories. And as you can probably tell, I adored him, too. With all of my being.

And now, both my parents are gone. Time has taken them. That’s what time does. And yet, they remain. Their marriage endures. They are my example. I am profoundly blessed to have been adopted by such a union–and I say this in full light of my less than idyllic childhood (I did mention that my mother was unpredictable and for anyone who has read Mothering Mother, they’ll also note that she wasn’t exactly easy to care for either!)

Still, love is what endures. Spending the last years with my mother and caregiving for her daily needs gave me the opportunity to witness love in action. Their marriage carried over, like the scent of gardenia on a southern night. The sweetness remains.

~Carol D. O’Dell

Author of Mothering Mother, available on Kindle

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