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Archive for the ‘dementia’ Category

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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All of us worry about aging. Perhaps we should worry less–and learn from a pro. So, who’s the oldest person who ever lived?

The oldest woman (that can be documented) is Jeanne Louise Calment. She lived to the age of 122.

Born in Arles, France, February 21, 1875, and left this earth on August 4, 1997. Now, that’s impressive–but what’ more impressive is her mindset, her ability to embrace challenges and change. If anything is the key to longevity–with quality–it’s embracing challenges and changes with a measure of wit and grace.

What attributes do you need to live a long, healthy, and meaningful life? Living past 100 isn’t just about longevity–it’s about quality. Being a caregiver, I got to see “old age” close up. My mom lived to the age of 92 and it was only the last two years that were extremely difficult. ( My mom had Parkinson’s, Alzheimer’s and heart disease). There isn’t always rhyme or reason why one person makes it well past 100 with a sharp mind and a spry body while another person seems to hit one health problem after another.

Many centenarians have eaten what they wanted, smoked, drank (usually in moderation)–while someone else who tries to follow all the rules finds a not so pleasant diagnosis. Life isn’t fair. That’s a mantra we must embrace–and not in a negative way–but by choosing to love what is kind of way, and knowing the only thing we can change is our attitude.  Life’s a crap shoot, so let’s play some craps.

Highlights of Jeanne’s Louise Calment’s Amazing Life:

  •  Born the year Tolstoy published Anna Karennina
  • Born one year after Alexander Graham Bell invented the telephone.
  • She met Vincent Van Gogh in Arles, her home town, when she was just 14. She wasn’t impressed.
  • In the end Calment was blind and almost deaf, but she kept her spunk and sharp wit to the end.
  • At age 121, she released her two CDs, one in French and another in English titled, Maitresse du Temps (Time’s Mistress). the CD features a rap and other songs. She wrote or contributed to five books.
  • Her husband died of a dessert tainted with spoiled cherries–she was a widow for more than half a century.
  • She outlived her only daughter who died of pneumonia at the age of 36. She raised her grandson who became a medical doctor and  lived him as well (he died in a car accident in 1963).
  • Calment took up fencing at the age of 80, and rode her bike until 100.
  • Calment enjoyed port wine and a diet rich in olive oil–and chocolate–two pounds a day.
  • At the age of 119 she finally agreed to give up sweets and smoking–because she could no longer see to light up.
  • Calment enjoyed a life of relative ease–from a bourgeois family, she always had enough money–not wealthy mind you, but enough.
  • She was active–and enjoyed tennis, bicycling, swimming, roller skating, piano and even opera. In her later years she sold some of her real estate and lived comfortably in a nursing home in Arles until her passing. She was affectionately known in France as “Jeanne D’Arles.”

Calment’s attitude and longevity s attributed to her decision not to worry: “She never did anything special to stay in good health,” said French researcher Jean-Marie Robine.  She once said “ If  you can’t do anything about it, don’t worry about it.”
Calment recommended laughter as a recipe for longevity and jokes that “God must have forgotten about me.” ( L’Oubliee de Dieu?) as her reason for her long life.

For skin care, she recommended olive oil and a dab of make-up.  “All my life I’ve put olive oil on my skin and then just a puff of powder.  I could never wear mascara, I cried too often when I laughed.”

Calment’s Quotes:

“I’ve waited 110 years to be famous, I count on taking advantage of it,” she quipped at her 120th birthday party.

Also on her 120th  birthday, when asked what kind of  future did she expect, she replied “A very short one.”

Getting used to growing media attention with every year that passes, she quips:  “I wait for death… and journalists.”

“When you’re 117, you see if you remember everything!”   She rebuked an interviewer once.

On her 120th birthday, a man in town said, “Until next year, perhaps.”

“I don’t see why not,” she replied. ” You don’t look so bad to me.”

Clement’s Best Quote:

“I’ve never had but one wrinkle, and I’m sitting on it.”

I don’t know about you, but aging like this doesn’t sound too bad. It sounds like a good life.

Enjoy life, learn to let go–even of those you love, crack a good joke, eat what you love, and don’t worry about the rest.

***

Mothering Mother is now available as an e-book! (click here to order for your 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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Today, my mother would have been 100 years old. I’m celebrating. She left this earth eight years ago, but she hasn’t left me. I spent the last three years of her life being her full-time caregiver and now, I’m back to being her full-time daughter. I feel the length and depth of our relationship. I see it as a whole or I can zoom in at any facet–when I was four and she adopted me, when I was fourteen with a splash of zits across my forehead, when I was 30 and a mother of three. Mother was there–for every stage. She still is.

I decided to take a quick glance at the year mother was born to see what it was like back then.

I decided to compare 1911 to 2011. Here are a few stats.

  • First use of aircraft as offensive weapon occurs in Turkish-Italian War. Italy defeats Turks and annexes Libya
  • Chinese Republic proclaimed after revolution overthrows Manchu dynasty. Sun Yat-sen named president
  •  Mexican Revolution: Porfirio Diaz, president since 1877, replaced by Francisco Madero
  • Roald Amundsen becomes first man to reach South Pole
  • U.S. explorer Hiram Bingham discovers Incan city of Machu Picchu.
  • Marie Curie (France) receives the Nobel Prize for discovery of elements radium and polonium
  • Chevrolet was founded in France
  • Ronald Reagan and Lucille Ball were born in 1911
  • First class stamp: .02 cents
  • Child labor at its height in U.S.

I notice the beginning of the car-craze we  grapple with still, today, Only now we’re focused on oil and how to fuel our four-wheeled allies. How much it costs, who has it, who needs it. It’s a pawn. It influences governments, commerce, and is a huge player in war. I also noticed Libya in the news–way back then–and again, in 2011.

Other similarities: more amazing inventions and discoveries include:

  • A 9.0 earthquake rocks Japan followed by a nuclear reactor scare of radiation contamination hundreds of miles in diameter.
  • Egyptian citizens take to the streets demanding and later receiving governmental changes.
  • Lybia breaks out in civil unrest as do other Middle East countries.
  • Gas prices continue to soar after last year’s major oil catastrophe in the Gulf of the U.S and due to escalating problems in the Middle East and a growing demand for the product.
  • Unmanned aircraft by DARPA is capable of staying in the air for up to five years
  • Virgin birth of a shark–second occurence we’re aware of (not kidding, folks, here’s the link)
  • Travolution system (by Audi) that allows its cars to exchange information with traffic lights
  • Gene that leads to longer shelf-life in fruits and veggies (Why include this? Think globalization and how we keep tampering with our food)
  • Omniderm–a substitute for human skin has been invented (and patented) by Israeli researchers, also artificial  corneas created by  U.S. doctors that could potentially restore sight to the blind
  • CERN successfully completes tests on the world’s first particle collider ( a potential form of energy)
  • Child labor is outlawed in major countries, but human trafficking (including children) remains a serious concern
  • Stamps now cost 44 cents

It’s obvious. The world has changed. The world is changing. And yet, I notice how certain concerns circle back around.

In some ways, I’m sad that mother’s not here to blow out her own 100 candles. But realistically, no. I’m relieved she’s passed on and is a part of this great universe.

Why? At 92 my mother has Parkinson’s, Alzheimer’s and heart disease. The last eight years wouldn’t have been pretty. Or satisfying. As a caregiver, I would have been way beyond burnout. Financially, her money would have been way gone, and money equals care in our country. I have no idea how I would have met her physical needs, much less her emotional needs. I don’t think, knowing where she was headed, that she would have been much more than incoherent and bedridden. Sad to say. Heartbreaking, actually.

Now, I do know of centenarians who spent their big century b’day by skydiving. That’s simply amazing.

But I’ve made peace with the realities of caregiving. That wouldn’t have been my mother’s outcome. She left this world with only the last year or two being rather rough. Not bad, to live 92 years and only the last two being less than desirable. Still, we enjoyed some good times those last few moments of her life. We played the piano, held hands, I let her eat anything she wanted–mostly Klondike bars. We looked at old photographs. I brushed her hair. She left this world on a gentle June evening with a breeze lifting a lace curtain overhead and me, by her side.

Happy Birthday, Mama.

What have you been up to these past eight years? Riding a comet? Are you sitting on a lawn chair enjoying some distant shore? Walking hand-in-hand with the love of your life?

What’s it like–over there? Is there an –over there?

Wherever you are, know that you are here as well–with me.

You used to relish telling me what to do. And now, I listen.

All my love, your daughter–

Carol

~Carol D. 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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Caregiving and romance doesn’t seem to go hand-in-hand, but in many ways, it’s the epitome of real love. To care for a spouse, to set aside other aspects of your life and even your marriage to care for an aging or ill parent or child, is about grown up love–the kind that gives, and at times, the kind that sacrifices. Keeping love alive isn’t always easy under the best of life’s busy circumstances, and caregivers even have added stress, but it’s so worth the challenge.

Love Do’s:

Number one goal: Survive. We call ourselves “Team O’Dell.” Some days we felt like a black-ops team whose goal was to get through the dangerous landmines of caregiving and raising teens without committing kamikaze. Wasn’t easy, but I liked the idea of the two of us on a covert mission. However you do it, stay united.

Do keep a bigger vision in focus: Your marriage, your health, your sanity, your humor, your passion–keep that visionary “finish line” ribbon in site. No matter what happens, how long or how hard caregiving gets, the goal is survive–and even thrive.

Do practice good manners. Kisses hello and goodbye, thank you for the hot tea, opening the door for your lady–treat each other like you would on your first date. Why? Because in honoring someone else, we honor ourselves and our relationship. It takes a bit of discipline at first and then it’s easy–and really helps to smooth things over on tough days.

Do compliment each other. Tell your loved one how brave they are. How compassionate they are. How funny they are. Caregivers (for the most part) don’t feel attractive, don’t feel perky or sexy, so remind them they are. Nothing is sexier than someone who knows how to love.  Compliments never get old–not when they’re genuine.

Do look for moments of connection. Forget going on a two-week vacation for now–don’t even torture yourself with the idea. You may not even be able to go on a two hour dinner date, much less a weekend getaway–so grab a kiss in the garage, dance to your favorite song in the kitchen, or better yet–start each day with a shower together! (that was the one place my mother respected my privacy–I think she was part-cat and was afraid to get wet!)

Do celebrate every chance you get. See some gorgeous wildflowers in bloom on the side of the road? Stop and grab a handful. Buy her a mini cupcake and stick a candle in it as a “you survived another week” celebration. Celebrating isnt about fancy gifts, it’s about taking notice.

Do say thank you often. Every day, in fact. Consider a gratitude board where everyone writes what they’re thankful for–a great kitchen or laundry room addition. Use a bit of irony: “I’m thankful I didn’t pull all my hair out today–or I’m thankful I didn’t rip that doctor’s nose off when he trated me so condescendingly.” Not all gratitude has to sound like a Hallmark card.

Do invest in your emotional and relationship bank account. The caregiving years may be a time for withdrawals more than deposits. That’s okay. Know that your relationship is strong enough to go on auto-pilot for awhile.

Do give mercy cards. Your spouse snapped at you for no reason? Don’t snap back–offer a mercy card instead. Sometimes we need to let something go, look over it, and realize they’re under so much stress that just need someone to cut them some slack.

Do stand up to your spouse when you need to. The other side of mercy is a showdown, and sometimes that’s just what’s needed. If you spouse is being an ass, pull him or her aside privately and tell them the strong truth. Sometimes it’s the cold-water thrown in your face that gets your attention.

Do use the ole’ good cop-bad cop routine if you have to. Let your spouse use you as an excuse if they need to. Sometimes we need to blame someone else–it’s okay–use every tactic you need to. In times of war the rules change. In times of caregiving, the rules change.

Do know and expect that the love and energy you give out will come back to you. Demand it back. Fully expect that your health and your relationship will rebound. We’re actually hardwired with tremendous reserves for time of great stress or need. That’s why we have such amazing brain and muscle reserve. When you need it, it’s there–but be prepared for the adrenaline dump that comes after it.

Do know how to pace yourself and take needed breaks. You can deplete those reserves–and then you have nothing left and your health can be in serious jeopardy. A six week hospital stint, a month of all-nighters–and before you know it, you are completely shot. Have you ever seen some daredevil on television do something so reckless that it’s just plain stupid? Don’t be a daredevil with your health (mental or physical) for anyone else. If you go past that, its dangerous ground. Accept that there’s is a limit to what you can do.

Do consider each other a source of strength. The arms of you spouse or partner should be the safest place on earth. Create a haven for each other.

Do know that caregiving will end–and yes, eventually it will circle back and begin again. So when caregiving comes to an end, grive, reocver and then…live, celebrate, play, work–fill your life in a million meaningful ways. It takes some time to get back to feeling connected with the rest of humanity, but it will come. We’re meant to be fully engaged on this big blue ball–so when you can, while you can, go make memories, do some good out there, learn, explore, give back, kick up your heels and make some noise!

Keeping love alive is crucial but it isn’t going to be easy.

Whether it’s Valentine’s Day or any ole day, you’ve got to have some fight and some passion in your relationship. Being a caregiver isn’t about squelching all the other parts of you–it’s about weaving them in anytime and anyway you can. Be willing to invest and preserve your relationships and be determined that caregiving won’t take you down for the count. Caregiving is yet another thing you can look back on and realize that ironically it made you strong and it’s a part of who the two of you are.

Life is precious and caregiving seasons come and go. When it’s time to play, to travel, to really get out there–do it with all you’ve got!

In the words of my daddy, “Be good and take care of each other.”

~Carol D. O’Dell

Author of Mothering Mother, available on Kindle

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A friend of mine told me that she confronted her mom about her memory loss and told her she was concerned it might be dementia or Alzheimer’s. Like many caregivers her hope was that she could convince her mom to visit a neurologist. Instead, her mom got furious and now won’t talk to her. My friend is devastated. She wonders if she stepped over the line, if she should have just made up another excuse to get her to the doctor, or if she should have just let it go. Now, there’s nothing but silence.

Being shut out of a loved one’s life really hurts. You question everything you said or did. You feel rejected when all you wanted to do was to help. What do you do now?

There’s no one right answer. Every family is different.

Suggestions for getting past the hurt: 

  • Give it some time–many people come around after their hurt and anger has subsided.
  • After a cooling off period, act like nothing has happened.
  • Try reasoning with them and assure them that avoiding the matter only makes it worse–and it might be a medication interaction or something else, but it’s best to know and be proactive.
  • Pull the “big guns” and insist the two of you go to the doctor–some people respond to a firm hand.
  • Try a bribe–is there something they’ve been wanting to do? For you to take them to see their sister, or take them to play the slots? Use whatever helps them safe face.
  • Send gifts and cards and lure them back. Be the bigger one and realize that you’re their lifeline and they need you right now–and if they want to “feel”  or “look” in charge, then let them.
  • Get someone else who’s on their good side to take them. They may not want to give into you, but they may go with their sister or best friend.
  • Leapfrog over a diagnosis and start dealing with the day-to-day concerns and issues you can do something about.

***

In the meantime, keep a journal. Make a note of any excuse, lie, avoidance, any times of confusion or bizarre findings such as the keys in the freezer, when they got lost coming home from the corner bank, or when they mentioned visiting a long deceased relative. As a caregiver you need to know what you’re dealing with and how often it’s happening.

Realize that a diagnosis isn’t going to do much–not in practical ways.

There’s no cure for dementia or Alzheimer’s and that the meds only work during the early phases of the disease and the medications only work on about half the people taking it, only slows the progression of the disease and typically only helps for about a year. But if your loved one is experiencing paranoia, anger issues, or anxiety, then ask about medications that can help these very real and very frustrating conditions.

If you suspect your loved one has memory loss then they probably do. so start working on practical aides (notes around the house, home monitoring, safety precautions such as a medical alert bracelet, and home help or live-in assistance, just to name a few).

Alzheimer’s and dementia certainly has its challenges, especially emotional ones. As the caregiver you have to be the bigger person. You have to do what’s right and not think about your feelings. Step over the hurt and find a way to reconnect.

~Carol D. O’Dell

Author of Mothering Mother, available on Kindle

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