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Posts Tagged ‘caregiving’

If your’e happy and you know it clap your hands…goes the children’s song. Now there’s a new twist: If you’re happy and you know it you just might live longer, suggests a new study just out by the University College of London.

In fact, if you are in your golden years and you keep up that positive outlook you’re 35% less likely to die than Mr. Scrooge and all those grumps who think that it’s just too much darn work to smile–or be nice to people.

This wasn’t just based on a “Are you happy” questionnaire. People tend to tell you what they want you to hear, or what they need to believe for themselves.

English Longitudinal Study of Aging followed more than 11,000 people age 50 and older since 2002 and in 2004 they collected saliva samples  on about 4700 participants. These samples were collected four times in one day and their moods were noted: happy, excited, content, worried, anxious, or fearful they felt at the time. Steptoe and his UCL colleague Jane Wardle have now published their findings on the links between mood and mortality in the Proceedings of the National Academy of Sciences .

Here’s their analysis:

Of the 924 people who reported the least positive feelings, 7.3%, or 67, died within 5 years. For people with the most positive feelings, the rate fell in half, to 3.6%, or 50 of 1399 people (The researchers adjusted for age, sex, demographic factors such as wealth and education, signs of depression, health, including whether they’d been diagnosed with major diseases), and health behaviors such as smoking and physical activity).

Even with those variables, the risk of dying in the next 5 years was still 35% lower for the happiest people.

But what if you’re not just one of those giddy, always up-beat types?

This is just my take, but there are many ways to be happy. People with dry wit, cynical types who see the world in a slant, and folks who aren’t the silly types, but who find a way to make things easy–these are all types of happiness.

I think we can carve our own happiness, and it may not look like someone else’s happiness.

Start a list:

  • What comforts or soothes you?
  • Add your favorite foods
  • Make a list of music you enjoy
  • Think about people you hang out with who just make you feel good
  • What every day activities do you find pleasing? Do you like to fold clothes or wash dishes by hand?
  • Have you watched one of your oldie but goodie movies you like lately?
  • Memorize three funny jokes–and share them!

This is the beginning of your happiness list.

Happiness isn’t out there–for others–it starts with the simple things.

~Carol O’Dell

Author of Mothering Mother

available in hardback and on Kindle 

Source:

http://www.cnn.com/2011/10/31/health/happiness-linked-longer-life/index.html

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I finished my blog, “How to Live and Die Well” and while I meant every word, my sarcastic side was reeling.  Admit it, most of us will leave this earth kicking and screaming ( at least on the inside). We don’t want to eat our veggies as much as we’d prefer to dive into a bag of Lays, and aren’t there some days when you want to embrace your inner grump and blast the world? So here’s my comedy version–and on some/most  days–it’s a tad closer to the truth.

How to Live a Horrible Life:

  • Indulge my every whim–even when I’m repeating an already disastrous scenario that didn’t exactly work out the first time.
  • Refuse to forgive–especially myself.
  • Hold on to, nurse, and even embellish grudges, past hurts, and assumed wrongs.
  • Accuse others of stealing from you, talking about you, disliking you (which they probably do by this point) because that further endears you to folks.
  • Watch lots of television.
  • Buy a scooter. Walking is for sissies.
  • Try and force things to happen. It’s exhausting and not trusting, but it’s based on believing that I’m actually in control–of anything and everything.
  • Keep that inner monologue of self-doubt and self-loathing going 24/7.
  • –while simultaneously blaming anybody and everybody else for my crappy life.
  • Get too little sleep, indulge in too many processed foods/sweets, and take a pill, any pill, all the pills I can find–for everything from a hangnail to hemorrhoids.
  • Never do anything that’s not for my own direct benefit.
  • Give up, give in, and then complain about how nothing ever works out for me.
  • Never say thank you.
How to Die a Horrible Death: 
  • Repeat the above steps for the next 40/50 years.
  • Get more demanding and grumpy with each passing year.
  • Threaten that “I’m going to die soon, so please just do this one thing for me,” to get people to cater to your every whim.
  • Go to a doctor for every little thing and take all the meds and all the free med handouts they give me.
  • Read lots of articles about horrible diseases and become convinced I have them all.
  • Push people out of the way with my cart and mumble “Move it, I’m old!” (my mother used to do this)
  • Become incontinent as soon as possible…
  • because we all know that our family members just LOVE changing adult diapers.
  • Insist others feed you and then let the food dribble out on your chin and down your shirt–your family will be sure to love that one, too.
  • Become so cantankerous that even the grim reaper doesn’t want to spend time with you.
  • Refuse to “go to the light.”
  • Fake your death scene–clutch your chest and gasp for air–just to get people all crying and worked up. Then yell, “Surprise!” (Facetious, I know, but don’t you want to try it now?)
Yeah, I’m having a bit of fun, but this list just might help keep me motivated.
I’m working on my Oscar-worthy death scene now….
Have some to add? Send ‘em my way and I’ll add them to the post.
In the meantime, happy living!
Carol D. O’Dell

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“Where was I? A caregiver friend of mine asks, standing in the middle of her life as if she has walked back into a room and forgot what she was doing in the first place. Life after (or between) caregiving can make you feel odd in your own skin. You’re not who you were, you don’t know what’s to come, what you’re good at now, or what interests you anymore.

Long term caregiving can feel as if you’ve held your breath so long you don’t know how to inhale and exhale like all the other folks on the planet.

My friend is coming up on the first anniversary of her dad’s passing. Fifteen years spent as a caregiver (primarily) and her hair is now strikingly white, she has a new husband, and for better or worse she’ll tell you she’s just not the same gal she was when she agreed to move in and care for her mom, then dad all those years ago.

Perhaps a better question is, “Where am I?”

Where was I doesn’t particularly matter. You’re however many years older. Your experiences, beliefs, and even issues have changed. And that’s okay. It has to be. It’s the nature of living–things change and so do we.

It’s not that things changed, most of us get that, it’s that aspects of our selves, our lives, were in stasis. We feel like we’ve been in cryogenic sleep and have no idea who won that last 20 World Series. Life has gone on without you. You have no idea what movies are in theatres, and whatever happened to DVD’s?

You may be thinking about going back to work, but what are you qualified to do–other than bring juice, fluff pillows, and argue with insurance companies?

Getting traction, momentum may take some time–and while you’re figuring this all out–grief sweeps in like giant waves crashing on top of you, buckling your knees, you come up sputtering with a mouthful of grit and a belly full of hurt.

Letting go of what was will eventually come. Let it. No, you’re not 35 any more, but 55 isn’t so bad. There are a few perks that come with aging, with living, with loving for so long. Letting go takes time. We don’t open our grip without some resistance.

In Finding Your Own North Star by life coach Martha Beck, she talks about being in quadrant one–when all we know dies, when our lives are reduced to rubble and we stand in the ruins, ashy, beat up, stunned, and the mantra is:

I don’t know what’s happening, and that’s okay.

It’s okay to not know what comes next.

It’s okay to have a decent hour when you’re not consumed with grief or anxiety followed by four crappy, baseball in the back of the knees–ones.

It’s okay not to have a plan.

It’s okay to bump into walls.

It’s okay to cry–not cry, scream–not scream.

That’s where you are.

And that’s okay.

My only suggestion is this:

Do what soothes you, follow any inkling of a curiosity, buy, borrow, visit anything or anyone that stirs something in you. These are the seeds of desire.

And our desires, however small or trivial doesn’t matter, are the thread thin roots of our new selves.

~Carol O’Dell

Author of Mothering Mother, available on Kindle

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Boomers and caregiving: Pass the joy with a side of stress. Rita Wilson spoke on the Today Show this morning  about her bountiful life–a mother in her 90′s, teens at home, being a new grandmother, and writing a new column over at Huffington Post/Huff Post 50 about women 50 and over. Her days (like most boomer’s days) sound like there’s more people to love and care for than any super-hero boomer woman can manage.

Like a very full Lazy-Susan, no matter where we turn there’s someone who needs our care. Celebrities in the news are facing what you and I face–Maria Shriver lost both her parents recently (her dad to Alzheimer’s), not to mention man troubles. Having a circle of friends where you can be honest about the guilt, the resentment, the sorrow, the changes, the disappointments life brings, the feelings of never being able to do enough, give enough, care –that circle of friends can save our sanity  (and maybe keep us off death row–or provide an alibi!) and at times may be our only lifeline when all we thought we knew crumbles.

ABC Nightly News recently called me for a quote to be aired on a caregiving report on the “Most Stressed Woman in America.” I’m not surprised she was a middle-aged caregiver. That’s not a beauty pageant I want to win.

And just as we find ourselves we begin to lose another–our parents are aging and disease is rearing its horns. We barely get two seconds to ourselves before we have to step up and make some of the scariest decisions of our lives. Can my parent still drive, live alone, should I move them in with me, into a care facility, should I trust this doctor, there’s so much I don’t know, how do I manage their care when my heart is breaking? And eventually, how do I begin to say goodbye?

Questions of who am I now, and who will I be without you circle like crows.

Women over 50 are strong and resilient. They know how and when to let loose and have fun. They’re fierce, love their family and friends, juggle far more than a set of china plates. They’ve weathered divorce, head lice, runaway teens, breast cancer, hemorrhoids, death and lost car keys–the big and small tragedies that come and go.

Don ‘t underestimate a boomer caregiver. They’re diplomats, warriors, shamans and alchemists. They hear the tick, tick of the clock and it doesn’t scare them–it motivates them. They’ve got plenty of goals but as they age they get off the kick of having to be crazy-busy all the time–being clear about knowing what you want and no longer wanting it all makes for a good life. Health, family, friends, simple joys like holding hands, waking to your favorite coffee, and taking a walk in the woods–that’s what matters.

I’ve recently joined this tribe and their example of wisdom and moxie is a good road map to follow. As I let go of youth I reach and strong hands surround me. I’ve read it’s not what comes next that scares us–it’s the change–that in between time just before we let go and leap. Free fall. It helps to have my friends cheering me on–and holding the rope.

Boomers and caregiving may come in tandem, but so do boomers and friends.

~Carol O’Dell

Author of Mothering Mother, available on Kindle

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Irene is bearing up the East Coast. Hurricanes are big, swirling monsters, but they do give us time to evacuate. Caregivers might have to evacuate an elder and that comes with quick and last second decisions. This blog focuses on the few (critical) hours before and after evacuation and hopefully offer some out of the box ideas to help get you to safe ground–fast.

Evacuating Elders Safely:

  • Don’t watch the news incessantly or in front of your care buddy—it can make your elder (and children) nervous/anxious. (My mom who had Parkinson’s’ and Alzheimer’s through that we were back in WWII when the 9/11 tragedy struck).
  • Quietly gather supplies (flashlight, wallets, water, powerbars or crackers and peanut butter, blankets and pillows if you can) and don’t wait too long. It’s best to give yourself plenty of time and try not to rush. Know where you’re going—shelter, hotel, other family member’s house—and let others know you’re A,B, and C plans.
  • Leave early. You don’t want a frail elder to have to scramble to a roof  or get them into a small boat to avoid drowning in a  flood.
  • Ask your assisted living facility or long-term care facility about their evacuation plan and know where your loved one will be taken and how you will be notified.
  • Keep medications in grab and go containers for quick evacuation. Take it all–who knows when you’ll be able to get back to normal.
  •  If your parent has a certain condition and you fear you may be separated, write on their arm/leg with a sharpie their name, your name, phone number and when meds need to be taken, what condition they have, etc.
  • Make sure that you have a copy of all insurance/medical information –as well as house insurance since many times you can’t get back into the house to get policies.
  • If you’re a working caregiver or long distance caregiver (really, everyone) have a back up person (neighbor, close friend who lives nearby) who knows it’s their job to check on and if need be, evacuate your loved one.
  • If you do need to evacuate write with a lipstick/sharpie marker, etc. on your front door who is with you and where you’ve gone—it’s awful to panic and worry that your loved ones can’t be found
  • Be specific. When things get hectic people feel uncertain. Give specific directions (“Get mom and go to X shelter,” or “Mom, get your purse and your cane. We are going to X). Sound calm but authoritative so that people feel
    safe and know exactly what they need to do.
  • Be super careful as you leave your home–the terrain could be wet, rocky, slick and uncertain. No need for an accident to happen–at the worst of times.
  • Know what comforts your elder–a certain way you talk, a song, a photo. Disasters disrupt routines and throw us into uncertain circumstances. Knowing what calms, what triggers–what does and doesn’t work is important to helping your loved one adjust.

~Carol O’Dell

Author of Mothering Mother, available on Kindle

Other helpful information can be found  at:

http://www.caring.com/articles/natural-disaster-tips

http://www.ready.gov/america/beinformed/hurricanes.html

http://www.cdc.gov/aging/pdf/disaster_planning_tips.pdf

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Last week I was asked as a Caring.com senior expert to speak on NBC Miami Live show and talk to folks in South Florida about how to choose a senior care facility for your aging loved one. Sometimes no matter how much we want to keep our loved one in their own home, or with us, it’s jut not possible. Working caregivers, frequent falls, severe dementia or other round the clock care needs can make it impossible for your loved one to remain with family. If, or when that time comes, it helps to have a plan and to already know your area and what it has to offer for families.

Here is a link to Caring.com’s YouTube channel to view the NBC Miami Live interview:

http://www.youtube.com/user/caringcom#p/u/0/u_8LHy-Cjto

It’s such a big decision and you want to make sure your loved one adjusts and is safe and well cared for. Are there specific points to help guide you through the search? It’s so overwhelming I thought I’d just bring up three key points to help guide you.

3 Tips to Consider When Searching for a Senior Care Facility:

  • Look past the fancy “storefront” and notice how folks are being treated. More and more facilities are beginning to look like country clubs, and that’s great but real care is what you’re after. Look past the golf carts that whiz you in and out, look past the luscious garden-like entrance, past the swanky lobby and even ask to see something other than the staged guest room all decked out with new pictures on the wall and a great view of the courtyard. Ask to have lunch with the residents. Stroll to the community center or gathering room. See if you can go down the hall where your loved one might be placed and see who their neighbors will be.
  • Don’t just take the tour–branch off–ask the residents (and their family members) who live there. Ask the residents if they like the food, if they get their medications on time. Ask their family members if they’ve ever had a bed sore or have problems with any of the staff or other residents. Even if they say the right words, notice how they hesitate, get antsy, or look around as if they’ll be heard. If your loved one has dementia ask to see that ward. Make sure there are safety measures for them not wandering away, and also make sure they are spoken to in a firm but kind manner. Look in their faces and see if they have that hazy drug look. Notice if they’re dressed, if their rooms are tidy, and if there’s a smell of urine in the air.
  • Ask how concerns will be handled, and what you can do if you need to change care facilities. Face it, you’re going to have certain questions and concerns. You’re going to have to ask them if they’ll change something to accommodate your loved one’s needs–that’s just normal adjustments. Find out how that’s handled up front. Talk to not only the day staff, but the night and weekend staff. Ask how they do their background checks and if they’re updated. Ask how you handle serious issues and what happens if you choose to move your loved one to a different facility.

Don’t think that once you move them in that your job as a caregiver is over. It’s not. You’re their care advocate. Visit often and not at the same time. Be cordial with the staff, get to know them and genuinely care about them. Bring in a treat or send them a thank you card if they’ve done something thoughtful or helpful. People respond to positive reenforcement and caring for a (sometimes) cantankerous, sick person who isn’t always jolly is more than a job, it’s a calling. It’s to your benefit to reach out. People who are visited often receive better care, and besides, it’s just the right thing to do.

There’s so much more I could talk about, but this is enough for now. In the end, follow your gut instinct. Stay involved and do all you can to surround your aging loved one with good care–no matter where that might be.

~Carol O’Dell

Author of Mothering Mother, available on Kindle

Got a caregiving question: Send it to me, Carol O’Dell, Caring.com’s Family Advisor at Carol@caring.com

(NBC Miami Live interview is now on Caring.com’s YouTube channel (click on link below):

http://www.youtube.com/user/caringcom#p/u/0/u_8LHy-Cjto

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I’m heading to France this summer and I’m taking a small photo of my dad standing in front of the Eiffel Tower during World War II. This Memorial Day we honor those who have served in war. We remember what they did. How they defended us. How they stood up for the helpless, the defeated. And now, many who have fought for our country are our elders. Their bodies are failing–and it’s our job to care for them and to give them the honor they deserve. Caregiving is more than meeting someone’s physical needs. It’s about remembering–all they are and have ever been.

Our fathers and grandfathers, brothers and mothers helped to stop Hitler–among others intent on destroying life. That’s amazing–and there are still atrocities going on in the world. People are still not free, and as flawed as we are, we still stand for justice. Maybe our government has mixed motives, but the men and women who serve in our Armed Forces have some pretty high ideals. We don’t want tyrants to take over, to kill and destroy, to obliterate the simple opportunity to live and work, marry and have families, eat and make a life for themselves and those they love.

So this weekend, look someone who has served our country right in the eye–and say thank you.

Ask them what it was like–to be “over there,” to be scared, to liberate a country, to ride in a tank. Give them the chance to tell their stories. Give them the opportunity to talk about it, for their chest to fill with pride. For them to relive their glory days. Get out those albums. Hang a flag. We’re far less patriotic than previous generations, and yet we are the ones reeping the benefits of their valiant efforts. Forget politics. Thank the men and women who protect us–who gave their time and for many, their limbs for something bigger than themselves.

I’m taking that photo of my dad to Paris with me. He was a sharpshooter and he helped to liberate France and Germany. He fought at the Battle of the Bulge. He stayed two more years to rebuild Paris. He absolutely loved serving our country–and now, he’s gone–but I won’t forget. I’ll tell his stories. I’ll visit Paris and Normandy. I’ll wear his dog tags.

~Carol O’Dell

Author of Mothering Mother, available on Kindle

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Forget Kubler-Ross’s five stages of grief. They’re merely a jumping off point. Grief isn’t linear. Grief is multi-layered and doubles back on itself. Grief is raw. For many, it’s the closest a person comes to unhinging–to a break with reality. Getting through grief isn’t easy and isn’t predictable. Getting through grief is different for each one of us, but the more we share, the more we reach out, the more we help each other.

Suicide. Murder. Car accidents. Cancer. A sudden heart attack…or the long and winding road of Alzheimer’s. Grief doesn’t start at the point our loved one breathes his or her last breath. Grief is about loss, and loss can start months or even years before death takes the ones we love.

Grief is biological. Animals grieve. Watch this YouTube video where an elephant herd has found the bones of their matriarch. They form a circle around the bones, pick up her bones and hold them in their trunk, feeling each crevice with their trunk. This collective sorrow is healing–and even elephants know they need to grieve.

And yet some of us don’t show grief.

We don’t cry at funerals.

We don’t sentimentalize those who have gone before us.

We show no emotions–does that mean we’re heartless?

Showing and feeling grief are two different things. Some of us don’t share our emotions with many others, but that doesn’t mean we don’t feel them.

Emotions don’t go away simply because we squash them down and cover them up–they ooze out the sides of our life. We overreact to a traffic jam. We drink too much. Sleep too little.

Others get lost in grief. The sorrow, regret, and sometimes guilt swarm around us and threaten to steal all joy and purpose. Years go by–and we’re stuck. We can’t move on. We have no desire to. It’s as if time has stopped and we got off and the train sped away leaving us back then–back there.

So how do you get through grief–how do you feel it when you need to and then allow it to pass–before it destroys your life?

No simple answer to that one. I won’t pretend to know.

Sometimes we have to force ourselves to get back into life. Join a group and make ourselves show up.

For some of us anti-depressants seem to help. For others, a therapist. We need to talk it out.

For others, we have to allow ourselves to wallow for a while–until we get sick of our own juices.

No one way.

How to be there for someone else who is grieving?

No “you should be better by now,” or ‘I’m worried about you.” That doesn’t help.

Be willing to sit quietly beside them. Show up at the same time each day, or each week.

Listen. Offer distractions. If you have to, get in their face and fight for them. If they reject you, keep coming back.

One of the most tender betrayals of grief and how very long it can take and how different it is for everyone–and that we have no right to judge someone else’s loss–is the movie, “Reign Over Me.” It’s about a man who lost his wife and children in the 9/11 tragedies. It’s one of the more honest conversations about grief–one that I think might help.

What those who are experiencing grief need is to believe in hope again–some small sliver of hope.

And you might just be the hope they’re looking for.

~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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CNN reported this week on people with Alzheimer’s who develop violent tendencies. This is the silent story that many families don’t want to talk about.  Family members (aka caregivers) don’t want to expose their loved ones. These respected family members were once doctors, lawyers or indian chiefs, as the saying goes–Alzheimer’s is the great equalizer and doesn’t care who you are, and pays no attention to your socio-economic status

We don’t talk about it. We deny and cover up, and stop inviting friends and extended family over. Spouses lie, make up excuses about the bruises. We’re afraid. We don’t know what comes next–where will they go, what care will they receive, can we even afford this care–and what if they get so bad that even the care facilities don’t want to deal with them?

How long can–or should a family, a spouse, an adult child manage the care of a person with Alzheimer’s, and particularly one who is dangerous?

As I read the article (link below) I saw correlations to my mother.

I remember the day she dug her nails into my arms and screamed for a good five minutes her nose practically mine. She knocked me out of the way to go and catch her imaginary taxi. Her eyes were wild. I knew we were in deep trouble. I knew that as a mother to teenagers who lived in the same house that I could not subject them to this. We had hit our wall.

My mother had Parkinson’s for years. The Alzheimer’s bloomed after she moved in with my family and me. Or perhaps it was there and she hid it–and I played along. I had noticed “signs” of paranoia and anger early on, but I chalked this up to her rather expressive personality.

As the disease took hold, she lost the ability to reason. I couldn’t convince her that my children weren’t stealing the crocheted doll that covered the toilet paper roll on the back of her toilet. I couldn’t convince her those were only squirrels running on her roof, not thieves breaking in night after night. I couldn’t reason with her that no, she couldn’t just wander off and catch a taxi to “go home” in our Florida suburban neighborhood. It always baffled me that long after our names and other useful information left her mind that the word, “taxi” stayed. Mother grew up in Georgia, not New York. I think she maybe rode a taxi twice in her entire life.

I stopped talking about it. People would say, “Just put her in a home.”

Like it’s just that easy. Money concerns–memory disorder units and other types of Alzheimer’s facilities that take this kind of patient cost upwards of $5,000 a month and are not fully covered by Medicare or insurance. Not to mention the emotional hurdles of all the times she begged me to never put her in a home, the worry of who would care for her, see past this, and how in the world do I even find a place and people I can trust?

So I stopped inviting people into our home. I stopped taking her places where she tended to act out. It was random enough that i wasn’t dealing with on a daily basis, but the inability to sit still, to pace, to worry, to fixate on me or on something bizarre–all that was there pretty much of the time. She trashed her room with the veracity of whole fraternity who had chugged a couple of keggers. I felt as if I were living in a lockdown facility and I was the unarmed warden.

My concern was that I’d lose it–my cool, my temper, my ability to control the situation. I could forgive her. She had a disease, that’s all. I had to rise above it. I was the one responsible for my actions. I didn’t want to do something I’d regret. I didn’t want to mis-handle my mother or this situation–or cause harm to my children, my marriage, my life. That tightrope was beyond exhausting.

My mother’s violent stage didn’t last too long. She was spiraling fast. Soon, within a few months, she went from violent to forgetting how to swallow. At that point I chose not to use a feeding tube. I had gone from one impossible decision to even a worse one. The thing about having your loved one at home and not in a care home is that you are 100% responsible for these decisions–and you have to follow them through. You witness the consequences of your decisions. You stand there every day and question yourself a million times. You don’t get to get in your car and leave. You stay.

How bad can it get?

Well, I’m here to tell you that Alzheimer’s can give them super strength and amazing endurance.

What’s the percentage of people with Alzheimer’s who are violent? The stats say 5-10% (National Health Monitor).

It’s a lot like schizophrenia in that most people who suffer with this terrible mental illness are not violent, but those that are get a lot of press, and can indeed, hurt people. It may be small percentage, but it still raises alarms.

Some Behaviors That Accompany Alzheimer’s Are:

  • Pacing,
  • Repeated mumbling words or repeated sounds
  • Ticks, cursing, “ugly” (berated, accusatory, or sexual) talk
  • Delusions (visual or auditory hallucinations)
  •  Pounding on a table or hitting their head, hand or object repeatedly
  • Fixation on some thing or someone (paranoia, anxiety)
  • Biting, pinching, hitting, kicking
  • Crying, moodiness, and other outbursts
How to Handle a Person with Alzheimer’s Who Turns Violent:  (Based on the CNN article)

1. Back down.

Most of the time, the incident escalates when the patient does not want to do tasks such as undress, brush teeth or bathe. Don’t physically force the person to do anything, she warned. This could worsen the situation and possibly injure all parties involved.

2. When the patient is upset, apologize — even when it’s not your fault.

Using this strategy will buy you time and good will. Don’t argue with an Alzheimer’s patient, because you can’t win.

3. When the patient becomes agitated, change the topic. (Redirect)

Change the subject. Move to another location. Distract them by something fresh–the birds outside, pretend a friend has called (make the phone ring) play a song they like. “If you can stay calm, you can mirror that calmness back to them,” Kallmyer of the Alzheimer’s Association advised.

4. Keep in mind that the world is distorted for an Alzheimer’s patient.

Know your loved one. Do noises startle them? Are they more upset around a certain person or time of day? Do you know what calms them? Do you have them on a schedule that works well for both of you? Are they sensitive to sugar, caffeine, or even experiencing pain (toothaches, broken ribs, urinary tract infections, and other chronic pains oftentimes goes undiagnosed and can add to their agitation).

5. Call for help.

When in doubt, ask for help. Call the Alzheimer’s Association Helpline. 24/7 for confidential help.

1.800.272.3900         1.800.272.3900.

No one is going to blame you or take them from you–if you ask for help before something horrible happens. No one can judge what you’re going through, and no one can understand what you’re going through. Be confident and don’t be shamed by this. Get the help you need. Call 911. Don’t wait for a tragedy. Get the guns out of the house–now. Hide the knives. You can live with a butter knife until you figure this out. You’re more than just a caregiver. You’re family. As much as you want to give up–you can’t. But don’t go it alone. Don’t isolate yourself. Reach out–get help–share your story. We’ve all been shamed for far too long.

CNN article link:

http://www.cnn.com/2011/HEALTH/03/30/alzheimers.violence.caregiving/index.html?hpt=C1

Great resource: Elder Rage, by Jaquelline Marcell

Carol O’Dell’s book, Mothering Mother is now available for your e-reader! Kindle version availble here.

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