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Archive for the ‘golden years’ Category

“You want to see my new girlfriend?” My friend’s husband teased his wife one day as I was visiting her in the hospital. He is her caregiver, her husband, her lover, her muse and mentor  of 40 years, and her illness had put a real strain on their relationship. 

He pulls out his wallet, takes out a picture and shows it to her. I can tell it’s a joke because he’s grinning from ear-to-ear. She breaks out in laughter despite her pain. They show me the picture.

It was a picture he had taken of his hand!

My friend was in the hospital–that time for close to three weeks. She has a chronic disease that has attacked her intestines. Her husband had sold his business and they had rearranged their life to accommodate this hostile addition to their family–illness.

Both of them had visions of their golden years–traveling in their RV, grandchildren, financial security, and lots and lots of leisure and fun. Hospitals, drugs, and pain was not what either had in mind.

To say that their sex life diminished is an understatement.

To say that sex doesn’t matter in the face of disease and pain is to not look at the whole situation. Sex does matter. It’s the one thing couples do together that they don’t “do” with anyone else. It’s a glue, a bond, a secret language, a healer of life’s wounds…to simply and biologically state it, sex is a needed release.

More magazine has an interesting article in September 09’s issue on this very subject. They state that 75% of all marriages that are dealing with chronic illness long-term end in divorce.

These aren’t shallow people. This isn’t Jon and Kate splashing their news on the headlines (not that they’re shallow, marriage is tough and I hurt for them and their children). These are quiet, hard working, family oriented people who  face surmounting, mind-boggling stress, heartbreak, financial ruin, unbelievable and unrelenting pain. And the one thing that can combat all this–their marriage and the healing powers of sex and intimacy–are taken from them.

How do couples get through caregiving and the strains it places on their marriage?

I observed my couple friends and this is what I’ve gathered.

You readjust.

You let go of what you thought life would be.

You dig deep to find your integrity.

 You find joy in the smallest of things. You find purpose as a caregiver.

You use your anger not at each other like weapons of mass destruction, but together, to get things done, to let off steam, to keep from going crazy…and you turn that anger into humor–maybe a little sick and twisted–but it keeps it from turning toxic inside you.

You do what you have to do to get by–and it’s nobody’s business. How you define sex may be different than other couples, and how and when you’re intimate may not fit the national average.

You get strong and tough and tender and real all at the same time.

I have no big answers here. It’s too complex and too gritty to give you bullet points–as if you could fire them on target and make it all instantly go away. What I have gathered from my friends and others I’ve seen going through years of what illness can do to a relationship is that the ones that make it create this circle of energy around themselves. They are one.

Couples who face caregiving challenges together have come through the fire, and on the surface, no, life didn’t turn out like they thought it would–but in many ways, it’s better. I witnessed it in my parent’s marriage.  The unity, the simplicity, the bond they have, they earned. You can see it in their eyes, they familiar gestures of thoughtfulness, the resolve in their voice. They have something profound.

~Carol O’Dell

Author, Mothering Mother

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If you haven’t seen Pixar’s UP, get in the car and head to the movies. I’m not kidding. That’s an order:) And if you are a part of or direct a care home, an adult day care or a senior community center, load them all in the van and take them to see UP. You won’t regret it.

If you’ve been reading my blog, you know I don’t use it as a way to endorse or promote anything I don’t passionately believe in–so I hope you’ll trust me on this.

And it’s absolutely perfect for Fathers Day! 
If you’re a caregiver, what a perfect outing and take your loved one. Sandwich Generation? Take everybody to the movies!

Oh, and take a box of tissues–and be ready to laugh, cry, smile, and leave feeling completely rejuvenated.

Yes, it’s a cartoon, but I’m not sure Pixar’s great films (Monster’s Inc. Toy Story, Finding Nemo, Wall E) can be placed in the category with Sponge Bob (sorry, Bob).

What’s UP about? I’m not telling. I will let you know what you could pick up from the commercials–it’s about a seemingly grumpy old man who has longed for adventure all his life–and about a young boy who so needs a friend. It’s much much more than that and old and young alike will identify with both these characters, their wants, needs and fears. It’s about dreams and adventures and how we find–and lose–and find our way through life.

Oh, and if you’re a dog lover, Doug the dog is adorable! He’s my dog, Rupert on the big screen–lovable, daffy, and most of all, loyal.

It’s about time that our elders were given their on-screen debut and delivered as the complex, meaty, powerful protagonists they are. Yes, it’s super-hero status in the best sense of the word–not because he can fly or walk through walls–but because he still has something amazing to offer the world–his time, love, and experience. It’s about time that the media portrays our elders with the respect they so deserve.

No, Pixar’s not paying (but feel free). I don’t know anyone who hasn’t been deeply touched. Take your dads. Take your moms. Take your aunts, uncles, kids, grandkids, and neighbors. UP will warm your heart, unhinge your tear ducts, and boost your heart.

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Move over, Michelle Obama, cause Mama’s in the house.

That’s right, Michelle Obama’s mother is moving into the White House.

Marian Robinson quit her job 22 months ago to help care for the Obama girls while Michelle and Barack started campaigning. She’s now 71 and a retired secretary and she’s moving into the White House on a “trial basis” before giving up her home in Chicago. While the presidential campaign was underway, Ms. Robinson cooked the girl’s meals, shuffled them to their various activities, helped with homework and kissed them goodnight. That’s a big job, but it was for a big reason.

That’s something I admire–a family that figures out how to care for one another and when it’s the appropriate time to do so. I’m not too worried how she’ll be treated a few years from now when she needs elder-care or caregiving. She’s invested in her family, and love is almost always returned.

The White House will be full again, with a father, mother, two children, a grandmother, and a dog. I like the idea of those old rooms bustling with the sound of feet running up and down the halls, of a grandmother’s stern call to order and the yelp of a dog.

Multigenerational families aren’t new. People used to live together under one roof out of necessity–to run the farm, to continue the family business. In fact, it’s on the rise.

More than 3.6 million parents lived with adult children in 2007, according to census data. That number is up 67 percent from 2000. And in the new economic light, more and more families are choosing to “bunk up” to save on expenses, and as a necessity for those who have lost their jobs.

Somehow, we got away from that in my generation. We got independent, perhaps too independent thinking that money would be enough–or as my southern daddy would say, “We got too big for our britches.”

My adoptive mother grew up in a multigenerational house. She was surrounded by aunts and uncles (her mother was divorced and raising two children on her own in the 1910’s). My mother’s memories are good ones. A large table with lots of food and conversation. She said she felt as if she had many mothers, not just one–and it helped that her mother could work full time and her two children had someone at home.

Times haven’t changed that much. Marian Robinson is an example of millions of grandmother’s who are either raising or helping to raise grandchildren. We need each other. We need our mothers and fathers to be a part of their grandchidren’s lives. That’s how values and stories get passed down.

From all I’ve read, Marian Robinson is going to be a busy woman. She’s noted for her independence and will only stay if she’s needed. She may even purchase a home nearby just so she has some privacy and doesn’t have to deal with the day to day fuss life in politics entails. She’s no where near slowing down and has recentlycompeted in the Senior Games running the 50 and 100 yard dash. No matter where she chooses to sleep, she’ll be an active part of the Obama household and everyone will benefit from that.

It’s not that her value as a grandmother is in throwing in a load of laundry or chauffeuring the girls around, it’s that the children will be influenced by her wisdom and will have that sense of family and continuity that’s so important. It’s easy to caught up in the “doing” and not the “being.”  The most valuable gift our elders have to offer is simply who they are–a part of us. Their life, their experiences, their stories shape and define future generations.

I have seen families take advantage of their elders–used them as free babysitters–and that’s not healthy for anyone. Sometimes we have to say, “No, not tonight, I have plans.”

As my mother moved in with my husband, our daughters and myself, I knew I had to strike a balance. My mother had to fit into our home, and in return, I (we) needed to treat her with respect and privacy. These are the concerns multigenerational families face. You don’t know exactly what your issues are going to be until you’re there, all living together. One person becomes needy, another bossy–someone needs more privacy than another, and…somebody always gets jealous. It’s just human nature and no matter how old we are, we still get jealous or needy at times.

My mother was always a part of our lives, and I’m so grateful that even though she was an older grandmother (she was 74 when her first granddaughter was born), she got right to being an active grandmother. She used to come over and get our girls and take them for an overnight stay as soon as they were out of diapers. They remember going to eat breakfast at Shoney’s with my mom and how proud she was showing them off to anyone who walked by, and then going to K Mart to hold the dolls. She’d buy them something small and even though these times weren’t fancy, they were just enough to begin to build a relationship–and memories. Our daughters remember my mother’s songs, her prayers and Bible stories, her stories–and even her quirks, her humor, her fears–everything that made her a whole person. So when it came time for my mother to move in with us, they expected it. In many ways, she was already a part of our lives.

Just the other day, our 21 year old daughter said she was glad her grandmother lived with us. That’s saying a lot, because she was there through it all, the Alzheimer’s, the heart attacks, and the end of life. She’s now able to measure the whole of the experience and not just focus on a particularly dark time.

What I wish for the Obama’s is that everyone will be patient and understanding with one another during this time of change. My advice, if I may offer a little–be quick to forgive, laugh at your mistakes, value your togetherness, and respect each other’s differences.

Getting used to living together and under such scrutiny is bound to cause some nerves to be razzled. Just as with any family, it takes time to learn to live together. But it’s worth it. There are times when we need each other, and that’s the best definition of what makes a family that I can think of.

In the end, the Obama girls will be surrounded by family, by legacy, and by love.

I wish them (and all of us) the best.

~Carol O’Dell, author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

Familly advisor at Caring.com

 

 

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Do you hear the tick, tick, tick of the death clock?

What’s the death clock you ask?

The death clock, is a website that calculates (with a little information you add in) the exact day you will die.

Sounds morbid, right?

I agree, but take this as a bit of fun and not too serious.

Playing with death–trying it on for size is one way humans deal with the tragedies of life–kind of like playing dress up with your mother’s high heels and your dad’s jacket.

So, I went to www.deathclock.com, (there’s also a few others– http://www.findyourfate.com/deathmeter/deathmtr.html, http://deathdate.info, http://www.death-clock.org/) and put in my numbers.

I didn’t really want to know when I’d die. But I have to admit, I was curious.

How can you not be curious?

I was raised in a uber-religious home and this sounded like fortune telling–something stricly forbidden to dabble in–which means it’s even more tempting, dangerous, and oh so fascinating…(yeah, I’ve got a bit of a rebellious streak in me, I can’t deny it).

So I typed in my info, and you know what? I feel better!

It says I’m going to live until I’m 100 years old.

Instead of feeling depressed about knowing my “D day,” I felt expanded.

100 feels pretty far away. I’m not quite half there. I still have a a whole lotta livin’ to do. 

I do take in account I could get hit by the proverbial bus at any time–that lightening could strike me for visiting that heathen site, (sorry, Mama!) or a myriad of other diseases and accidents could come barrel my way–but I’m not the type of person to be paralyzed by the “what ifs” of life. 

But I’ve seen the dark side of agin. I know what Alzheimer’s looks like, about the challenges that come with aging.

My dad died of heart disease at 78, and my mother lived with Parkinson’s and Alzheimer’s and died at the age of 92 (they were my adoptive parents and older than most parents). I was her primary caregiver and she lived with my family and I the last three years of her life.

I wrote every day my mother lived with us.

I wrote what it’s like for her to live with this disease, what it was like for me, her daughter to struggle with the challenges of being a sandwich generation-er. I wrote about our fears, our fights, our hurts, our day-to-day challenges, and the truth about the guilt and resentment caregivers and families are afraid to say out loud.

Our story became a book, Mothering Mother and has been read by thousands.

The fact is, if you live long enough, you stand a real strong chance of getting Alzheimer’s.

Deal with it. Sounds cold, but what I mean is…do what you can now to take care of yourself.

Eat healthy, have a good attitude, walk every day. Forgive.

Those are the best ways I know of to stave off that dreaded disease.

And even if you get a diagnosis, don’t just crawl up and die. You still have time–love your family–leave a legacy. Don’t spend your precious time worrying.

I don’t know if you want to try the death clock–if it all seems like a bunch of hoo-haa.–but if you’re feeling brave, then take a twirl with the grim reaper and give it a try.

A few years ago, I wrote a “100 Things To Do in My Life” List.

I wrote it while we were on vacation. I wrote it around the margins of an old Rand McNally atlas we had in the car–apprapo, I guess.

I wrote things like:

  1. Go back to college and get my BFA
  2. Design and make a bronze sculpture
  3. Visit the Vincent Van Gogh Gallery in Amsterdam
  4. Publish books (plural)
  5. Take a cooking class in Napa
  6. Repaint all my favorite Van Goghs myself
  7. Create cool yard art–and sell it
  8. Be paid 500 bucks an hour to speak and inspire people
  9. Be on the board of a charity/organization and help make a difference
  10. Design an Italian garden
  11. Have a 30+year writing career
  12. Be a GREAT grandma
  13. Speak French, Italian and Spanish fluently
  14. Live in the South of France for several months
  15. Win a PEN award
  16. Stay married, stay healthy
  17. Forgive and not grow bitter

I wrote this in 1999. I was dreaming big,. I packed it away and didn’t look at it for more than five years. My heart and my words guided me intuitively.

There are 126 items on my master list.

Of the 16 I listed here, 11 have already come to fruition.

I have 53 years to achieve the rest.

A friend of mine said she saw The Bucket List this week and that she loved it, but a friend of hers said they wanted a list of all the things they didn’t want to do–a “Chuck It” list. I like that idea too.

Or you could do an “anti-list.”

Remember that edisode on Grey’s Anatomy when that guy found out he was dying and decided to video-taped himself chewing out all the people he hated/who had hurt and humiliated him? This is what he chose to do before he died.

How cleansing! To leave this world feeling like you said your peace. Perhaps is he had done this sooner, he wouldn’t be dying.

What would be on your anti-list?

I’d love to never ever have another root canal…how about you?

So maybe I should rename the Death Clock to the LIVE clock.

After all, I have a list that needs a whole lot more check marks. Instead of counting down the days until I die, I should count each day I’m living.

Instead of following the old cliche, “Live a little.” I think I’ll rewrite it:

Live A lot!”

~Carol D. O’Dell

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

available on Amazon

www.mothering-mother.com

Kunati books, www.kunati.com/motheringmother

Family advisor at www.Caring.com

Syndicated blog at www.OpentoHope.com

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Last night, the television show Boston Legal had one profound moment relating to Alzheimer’s.  

The premise is that one of their leading characters, Denny Crane (played by William Shatner) has early Alzheimer’s. He’s a brilliant attorney who has never lost a case–and he’s part owner in firm. The other law partners are hesitant for Denny to continue to litigate. Not only is he forgetful, he sometimes does or says bizarre things. Things Alzheimer’s patients might say or do.

Great scenario because I happen to know a great law professor from Yale who lives in my community who now has Alzheimer’s. You can be homeless and live under a bridge–and have Alzheimer’s, AIDS, or cancer–or you can be the president of the United States.

At one point, Alan, Denny’s best friend is having a conversation with Jerry, another lawyer in the firm, (who suffers from Asperger’s syndrome) about what a phenomenal job Denny did in court. Jerry blurts out, “Too bad Denny’s dying from Alzheimer’s.”

Alan is shocked. Insulted. He retorts:

“Denny’s not dying from Alzheimer’s. He’s living with it.”

There’s a great distinction here.

One of the drawbacks to early diagnosis is giving up too soon.

Early detection should mean that you receive proper medication, spend time with your loved ones, and make plans to live–not die.

In the case of Alzheimer’s, the average patient lives 8-10 years, and even longer depending on the age you contract this disease. Parkinson’s, ALS, MS, and other diseases can even offer a longer lifespan. Coincidentally, the average caregiver spend 4.3 years caregiving–leaving a bit of a discrepancy here.

The message is: don’t give up too soon.

Don’t hear a diagnosis and go home, draw the curtains, curl up in a fetal position and wither away.

As a family member or caregiver, it’s a blow to hear that your loved one has a terminal illness, but you still have to get up and face each day.

Michael J. Fox says that Parkinson’s is “the disease that keeps on taking.” He’s chosen to live with his disease. He’s chosen to do this for the millions who look to him and rely on him to raise money for research, for the difference he’s already made, but I’m sure he does this even more for his wife and his children.

A recent example is Ted Kennedy’s diagnosis of a malignant brain tumor. He had a seizure and went into the hospital just last weekend. Yet today, he and his wife, Vicki went sailing. He loves sailing and the Boston Globe said he “finds renewal on the water.”

Ted Kennedy is actually teaching his family and others how to treat him. The Chicago Tribune wrote, “Kennedy’s cancer is dire, not hopeless.”

It’s proven that prayers and good thoughts can impact people’s lives clear across the country–and we can create the atmosphere and attitude around us by how we handle our own bad news.

Maya Angelou says, “We teach people how to treat us.”

Yes, it’s natural to feel kicked in the gut.

It’s natural to take to the bed, cry, get angry, lash out or pull in. Don’t beat yourself up for going through this very natural stage.

But after that, it’s time to move on.

You (or your loved one) most likely won’t die tomorrow. Or the next day.

So you take your meds, maybe get physical or occupational therapy. Change things around in your home, hire a home health aide, buy a walker or scooter or whatever else you need. Life is different. I don’t doubt that. But life can still be good.

You can still find joy–and purpose.

Sometimes our purpose is nestled in our situation. Sometimes something–or someone arises in our midst and a window opens where a door shut.

Yet, there will come a time–hopefully in the distant future when the tide turns again.

You, or your loved one may die from this disease, I can’t promise you won’t. 

If not, from something else.

We have to eventually accept that as well. Another transition. Another acceptance. Another change.

But until then, live, live, live, live, live.

~Carol D. O’Dell

Check out her book, a day-to-day, intimate and honest look at caregiving…

Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

available on Amazon

www.mothering-mother.com

Family Advisor at www.Caring.com

Syndicated blog at www.OpentoHope.com

www.kunati.com/mothering

 

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Caregiving and Enjoyment are not two words that are always linked together, and I personally know how very challenging, frustrating and exhausting caregiving can be since I was my mother’s full-time care person (aka daughter) for the last three years of her life.

But there are many great aspects to caregiving.

Did you know that research has proven that there’s a high satisfaction rate among caregivers in regard work and purpose? They might be talking about those who do this professionally, but this still applies to the average family caregiver.

I can feel your snarls, glares, and tisks, but it’s true, you can enjoy caregiving.

Why? Because it matters.

Humans need their work to make a difference. Most people need to feel needed. They need to feel that their time and efforts, no matter how hard, accomplished something.

Now, I know that cutting pills, making trays of food, changing soiled sheets and clothes is anything but a glamorous lifestyle, and I know that caring for someone with Alzheimer’s can feel like an endless jaunt on a hamster’s wheel, and that your days seem monotonous and heart wrenching.

But your time is not wasted. Not for you, not for your loved one.

I recently listened to The New Earth by Eckhart Tolle. This is Oprah’s book club pick and she’s also doing a huge teleseminar on it. Why is she investing so much into an author/speaking/spiritual teacher?

I was skeptical. I’m a self-help book junkie, and honestly, they all say the same thing–different spins, but as I began to listen to The Power of Now, and The New Earth, both by Tolle, something in me clicked. He quotes Buddha, Jung, the Tao, and especially Jesus.  Since my background includes being raised as a preacher’s daughter in a Pentecostal faith, I find the words, concepts, ideas of Jesus the easiest for me to comprehend, and the most soothing.

The book in a nutshell:

Time, past and present is an illusion. Only the present has power. By being present, accepting where we are, who we are, why we are here, our lives will have meaning, joy, and purpose. Worry and regret steal our joy and make us miserable. Worry is based on living in the future, and regret deals with living in the past.

As a caregiver, nailing me down to the present wasn’t easy. It was a place I didn’t want to be.

I wrote in Mothering Mother:

Never ending

The now consists of needing to call Mother’s neurologist for an appointment and to write him a private letter explaining how things really are, noting the changes I see, the things I can’t say in front of her.

I need to change her sheets every day due to her incontinence. A permanent mound of sheets, towels, and gowns sits in front of my washer, waiting. I have to pick up the food chunks from under her table before they get ground into the carpet. I need to buy a plastic mat, but I’m afraid she won’t be steady on the slick surface because of the Parkinson’s, so I mark that off the list and write down carpet cleaner—four cans. Scrubbing the carpet might break up the monotony of laundry.

I need to cut her iron pills in half so she can swallow them, cut her fingernails and toenails so she won’t look like one of those Taiwanese dancers, put figs on the grocery list, call the post office for the third time and find out why her mail isn’t being delivered. She loves to nag me about this one.

I need to apologize to the neighbor for Mother calling the police last night and waking them up. She must have called 9-1-1 at about two in the morning. I woke up to the doorbell and the flashing red lights outside my glass front doors. I let them in and glanced out the door, noticing the neighbors standing in their driveway, looking our way.

Now I’ll have to assure them that there wasn’t some sort of catastrophe. Mother’s just elderly and gets scared or bored, or thinks every gas pain is a heart attack, or whatever it is that makes her do this. I guess I better warn them that this will most likely happen again.

Mother likes firemen—it’s the uniform. She loves dialing 9-1-1, or nine-eleven as she says, like it’s some shorthand code for club members. She doesn’t know about the other nine-eleven.

I need to have a talk with her and ask her not to fuss at the kids. They’re beginning to avoid her. I’ll notice one of them walking into a room and making a U-turn if she sees Mother sitting at the table because she’s forever griping that they really don’t want her, that her mother would never let her go out of the house dressed like that, or that they need to stay home more and help me.

I tell her it’s time for them to be on the go and yes, they do love her and want her here, but do they?

Do I?

I know she needs to be here, to be safe and cared for, but right now I’m not quite sure what I’m getting out of this, what any of us is getting out of this. All I can think about is this list that goes on and on. Each child comes with its very own to-do list of doctor appointments, schoolbooks to buy, clothes and shoes to purchase, not to mention that I need to just be their mom. I get only so many days, just so many car rides, to listen to their daily frustrations and sing oldies on the radio while we share fries and a Frosty. This is a limited engagement.

Phillip works all day long and deserves to come home to open arms and a smile, not a ratty-haired gripe who doesn’t care if there’s dinner or not.

How am I supposed to suddenly be interesting, attractive, and pleasant? 

How do I keep this family going?

If time is a series of beginnings, middles, and ends, then where are we? 

One month in and I’m already worn out.

***

See? I wasn’t kidding. I do know the realities of caregiving and I’ve never tried to sugar-coat them. I also know that this time in my life is now valued. I’m grateful for this experience.

So how do you stay present in the midst of all this?

How do you not get caught up in all the “doing?”

You let it take you. You become overwhelmed, you feel the pain in your shoulders. You cry. You pray. You scream. You fall into bed.

We think of balance as every day having balance instead of realizing that weeks, months or years balance out other weeks, months or years. Ecclesiastes. There is a season…

Enjoying caregiving isn’t fooling yourself about how hard caregiving can be. It’s accepting it–all. Life can be hard. It can be exhausting, hurtful, and back breaking.

But it can also be good. I am one of the fortunate ones. I have a husband. I have children, and a home. I had a mother who needed me, and a Daddy who adored me and died way too soon. What I wouldn’t give to have him here. I’d gladly accept the work, the load, but I don’t want him here in the same pain, the same shortness of breath that wracked his body (heart disease).

How do you enjoy caregiving?

Accept that you are blessed, and that living in a frustrating, exhausting, chaotic life is just the way it is right now. Yes, plan for the future. Realize that you may come to the point to where you simply can’t do all this. It won’t mean that you don’t still love your mom or dad or spouse, that you won’t still care for them, but that you’ll need help.

Stop, take a deep breath. Find something to be grateful for. Say thank you for this one simple thing–a rose blooming outside your window–a hummingbird. Say thank you for this one thing again and again. Breath deep. Say another thank you.

The gift of caregiving is that it really does remind you what’s important. Your family, your health, your strength, knowing something profound and simple about life that so many people bulldoze over each day.

~Carol D. O’Dell

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

available on Amazon

Family Care Advisor on www.Caring.com

www.mothering-mother.com

 

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The latest stats released by the Alzheimer’s Association paint a grim picture.

USA Today reported that ten million are expected to get Alzheimer’s over the next 2 decades.

Most boomers I know are a bit stunned. 1 in 8 will get Alzheimer’s.

I started bunching people I know in eights. Terrible, I know.

My husband has 8 siblings. Which one?

I mentally grouped my friends and imagined myself visiting them, trying to rouse the remnants of our relationship.

It was so much easier in my imagination for it to be somebody else other than me!

I felt like those people in the Titanic lifeboats. The boat’s too heavy, who’s going to get the ole’ heave ho! We always kid about poor Leo’s icy fingers being pried off one by one. My husband says he can see me doing that. I tell him I’ll sing him a Celine Delion song and wave to him as he sinks to the bottom of the Atlantic. Just kidding.

I walked around for days living too far into the future, speculating too much about whether or not I’d be the one in eight.

Then, I remembered the quote:

“To tell a man his future is to condemn him to one.”

That’s kind of what this news did. Maybe it didn’t mean to.

I assume their reasons for imparting this knowledge was to spar research, educate the masses, but I wonder if they know what they’ve done?

It doesn’t take long for the rebellious inner child to stand up and yell, “Hell no!” I’m not going without a fight.

I’ve already seen Alzheimer’s up close and personal with my mom. She had Parkinson’s for 15 years and Alzheimer’s for at least the last three years of her life. That’s when I brought her into my home, so I know how brutal it can get. What I’m not willing to face is a two, three, four decade old bully poking at me, taunting me, telling me over and over he’s gonna get me in the end.

Are you worried about getting Alzheimer’s too?

One thing I’ve done is to go ahead and play my own devil’s advocate.

So what if I get it? What will life be like?

Many scenarios here: I could be mean and belligerent. Doesn’t sound half bad, I’m kind of tired of being nice all the time.

If I just had one day where I told people what I really think…

It could be scary. That’s what I don’t want. To be on the edge. Nervous, agitated, restless to no end. Paranoid. Angry beyond consoling. To that, I say, drug me. Drug me in a stupor if you have to. By then, I promise you, I’ll have had a good life, and if it’s too awful for me or for you, then I give you permission to gork me out of my…mind. If the last couple of years are a throw away then so be it. If it’s painful to watch, then don’t.

Go live a big, bold, purpose-filled life. That’s the best way I can think of being honored.

I’ve told this to my husband and my girls and it’s going in the “important drawer.”

If you love me, then do something meaningful with your life–in my honor, if it makes you feel better.

But, if I’m just in la-la land, rambling around in the past, and I’m rather amiable, then let me enjoy it.

Don’t remind me who’s dead or that I’m nearly there myself. I don’t expect you to play along and mess up the delicate balance of reality you’ve scrambled for–just make me comfortable. If I think I’m sixteen, or twenty four, or forty-four, then let me enjoy it.

I learned the hard way with my mom that most people fear Alzheimer’s (both as caregivers and for themselves) because they can’t control it. It scares them, rattles their nerves. Their loved one acting “not like themselves,” angry, sexually explicit, fussy, playing in feces–it unnerves people. Is it really all that bad? My brain went kaflooey. It’s not a reflection of the kind of person I chose to be–we are in fact, what we choose. It’s not a reflection of our relationship or of you. It just happens.

Brains go haywire and you can’t control it any more than you can control your dreams, your nightmares, and all those random blips that you dare never admit or mention to anybody. It’s just random electrical spasms of disconnected thoughts and of all the other thoughts you’ve suppressed. We all have it inside us, don’t kid yourself. We have to eventually make peace with our humanity, and our lack of humanity.

We have to make peace with this base self, animalistic, driven, insatiable self.

This isn’t even the bad part.

Alzheimer’s does a lot more to the body and mind than simply making a person different or moody or playing in their poop. You think that’s your biggest hurdle at the time, it’s not.

The forgetting grows like a fertilized weed and it begins to invade a different part of the brain and a person’s life: recognizing not only those they love but even themselves and what it means to be here, recognizing objects like what to do with a spoon, what to do with the food someone placed in your mouth, or when your body forgets to take its next breath.

 That’s when you wish for your fiesty loved one to return to you–memory intact or not. We have to come to terms with this too, and this is much harder and deeper. This is when chaos collapses in on itself. This is when as a loved one, you get quiet. You stop talking about it all, complaining. You’ve shed so many tears you don’t have any left. 

This is Alzheimer’s.

I kidded with my girls on Easter Sunday. I told them if I have mild dementia or Alzheimer’s, that I want a dress-up box–with a fireman’s hat like I had as a child, and French beret (we always had a dress-up box when they were little) I want a boa, and lots of make up, and a yellow rain slicker and golashes. I want a cat, I’ve always had a kitty. I want paints and crafty things. I want my room filled with Van Goghs. I want to work in a garden. I want to dance. A lot. I want loud music and me in my boa and fireman hat clutching a bouquet of forget-me-nots and a kitty in a windowsill looking thoroughly disgusted with it all.

We laughed. They said they would. Then they argued as to who would get me. They said they all took their turns with Nanny (my mother). I told them if I had known that would do them in, (trust me, I was the primary caregiver, not them), then I’d have let her fend for herself (joke, we’re quite a facetious bunch).

Each of my daughters have their attributes. At my youngest daughter’s house, I’ll be a fashionista–coach purses and Italian scarves. She promised me we’d make tents in the living room out of sheets and blankets.

At my middle daughter’s house, she’ll clean out my ears and under my nails. My clothes will be folded neatly–neater than they’ve ever been folded. We’ll color a lot there, and I’ll finally be on time wherever she takes me.

My oldest daughter will feed me anything I want. She’s a candy-aholic. We’ll stay in our pjs and watch movies, and she will kick butt with doctors, let me tell you.

While all this is “play talk,” it’s a good way for families to start easing into the more serious conversations.

I do this on purpose. To open the doors. To make everything not seem so ominous.

We all have living wills. We kid about what we want, but we also have the serious stuff in writing–about sustaining life, feeding tubes, and issues no person should have to make for another.

Am I worried about getting Alzheimer’s? Sure, but I fight it.

Are you? It’s only natural, but I hope you find your own ways to work through some of the fears.

I hope you turn the light on the bully monster in the closet and let him know you don’t plan on being intimidated for the rest of your life.

As I’ve mentioned in other blogs, I know what to do to prevent it as best I can–but life’s still a crap shoot.

I think I’m better off concentrating on having some big adventures, some wild tales and daring feats.

If I’m going to eventually forget everything, I plan on having a lot to forget.

~Carol D. O’Dell

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

available on Amazon

www.mothering-mother.com

www.kunati.com

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