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I never thought this day would come–when I’d write about making peace with my mother. My mother was difficult, and that’s an understatement. It’s not that I’ve ever known anything different. When some people read my book, Mothering Mother, they ask how I could have forgiven her, much less taken care of her. The reason is simple: caregiving is more about you–your character,  your journey–than it is about them.

While my mother was demanding,  domineering, rather self-serving, somewhat violent (I grew up in the day when spanking, whipping, and  even slapping your child across the face (which she did more times than I can count) wasn’t all that unusual–mine was just a bit more extreme), but my mother was also funny, bigger than life, and she ironically adored my daddy and me.

I spent  my 20s pretty darn angry–about being adopted, about her  rages, and in general, just one big hot  mess. Eventually, I got tired of being angry. I got tired of carrying such a huge “life isn’t fair” grudge around all the time.

So, in essence, I simultaneously wore it and decided to let go.

Not because she  did or didn’t deserve it, but because I did.

And in full disclosure, there were many times (teen years especially) where I was not the ideal daughter and she had every right to be beyond frustrated/irritated and  at a complete loss as to what to do with me.

We continued to have  our tiffs and rifts. I still had to stand up to her–toe to toe–and she still managed to wield her emotional  knives and sometimes I didn’t see them  coming and  would once again buckle under the hurt. Still, this formidable woman gave me more good than ill. I honed my strength, my courage, and my faith by having it tested again and again. And in time, as I  married, birthed and  raised children, I became aware that  all mother-daughter relationships are fraught with a tangle of emotions, regrets, and misunderstandings. I  have  more compassion for my mother these days and I ask mercy from my own adult daughters. Yet I know  there will be so much I won’t understand and they won’t understand  until it’s time. Until then I will be their whetting stone and they  will sharpen their axes on me just as I, in turn, did to my mother.

I am finally at peace with my mother. Not in some Pollyanna way. I am at peace now because I am somehow able to open wide and embrace all of it–I can remember and absorb the pain and it no longer poisons me.

I remember the day  I opened Jack Canfield’s book, The Success Principles and read his first entry:

I am  100% responsible for my own life.

That day I finished growing up (not that  we are ever done growing).

The angst of a mentally ill birth mother, a alcoholic-addictive father, a cold grandmother saddled with grandchildren to raise, being  abused and  being adopted by the age of four to a mother wrestling with religion and force and hardened old and narrow  ways–all of it burned by some holy fire, no more than ashes.

I am 100% responsible for my own life.

Peace.

Only by loving what is–all that she was, that I was, all that we are and will  forever  be–am I now capable of holding us in that sacred and loose place. I can smile and say with  an open heart and wide arms,

“Oh, we’re  such a mess, aren’t we?”

We don’t tend to talk about our love lives and caregiving in the same conversation. Why? Does sex go out the “caregiving window?” Do you stop desiring your partner when you enter into the caregiving role? Many do. It’s not that we don’t still love each other. We may recommit our hearts  and lives even more when our loved one needs us–but needing and wanting are two different animals and you don’t necessarily have to stop being a sexual creature just because you’ve aged, have a disease, or find yourself caring for someone.

I recently watched this AMAZING TED video titled, “The Secret to Desire in a Long-Term Relationship.” presented by Ms. Peres bas traveled the world studying erotic intelligence. Ms. Perel talks about the dilemma modern couples face–marrying for love (as opposed to a mere societal contract) and living a very long time together–all while supposedly enjoying security as well as hot sex.

There is no caretaking in desire. Wanting is desire. Neediness is not attractive. Ms. Perel reminds us that anything that reminds us of parenting i.e. (taking care of someone) is a turn-off, as it should be. We need our parents. We want (or desire) our mates.

What’s a caregiver to do?

Nothing saps your desire as much as exhaustion and worry, sleep deprivation, a counter lined with pills, a hospital bed in the middle of the living room, care assistants traipsing in and our of our houses, or a long stint in rehab. We think that sex has to take the back seat when someone is sick, aging, or has entered into the dying process.

But it’s part of who we are. Sex is mystical. It’s a binding agent in our relationships. It’s a way to express not only joy and playfulness, but it’s also a healing force–physically and emotionally.

I faced this issue (sort of) while caring for my mother who was living with us (hubby, kids, and me). She needed 24/7 care for Parkinson’s, heart disease and dementia. She was demanding (to say the least), fearful, as well as in need of real hands-on care. Not exactly the ingredients needed to get in the  mood. I found myself compartmentalizing who I was at any given moment. I’d slip out of caregiving mode and into mothering mode when one of my children needed me to help them study for a big test, or to take photos of them before they went on a special date. I’d slip off that role and step into being my husband’s lover as I slid the bathroom door shut, turned on some sultry music and stepped into the shower for a few minutes of “alone time.” Twenty minutes later and I’m back in the kitchen, dressed, and cutting my mother’s pills up for the week.

I had to learn how to shut down one part of me and slip on another.

What made that challenging was stepping out of the lingering emotions–resentment (can’t I just have 30 minutes to myself?) guilt (I know she needs me, but my girls need me, too), worry (I’m so afraid they’re going to put her back in the hospital–and they’re going to push for exploratory surgery and not only will that not fix anything, but there goes my life for how many weeks!)

How do you still tap into your love life even while caregiving?

Here’s a few things I learned:

  • Stop trying to be everything to everybody. It’s impossible. There will be gaping holes I can’t ever fill.
  • Decide not to always be available. Shut the door. Go to my room. Shut the door. Lock it if I have to.
  • Time for me–first. I learned to not bolt out of the bedroom in the morning. If my family made it through the night (or even part of the night, in my mom’s case), then they could go 30 more minutes without me. Having time to shower, dress, journal or stretch before I hit the caregiving concrete really helped me separate them–from me.
  • Don’t get lazy. Kiss good morning or good bye. Say thank you. Make the effort to smile. Learn to be a good conversationalist. Sit next to each other on the couch instead your own recliners. Spritz on his favorite perfume–not because you’re  going somewhere–just because he likes it.
  • Create sexy moments–and a moment may be all there is. Duck into the pantry for a steamy kiss, grab his butt while he’s in the fridge, flirt by text, tousle his hair at the breakfast table. You may not have the time or energy to do any more than that–but “that” can be really good.
  • Slip in and out of roles–as I mentioned above, turn off–and on–who you are. Do this for yourself. Learn to turn OFF caregiving. Go back, just for a few moments, just to be their daughter, or wife.
  • Be playful. Desire is loose. It thrives on spontaneity. So if you feel yourself always clenching, always on alert, stop. Do some stretches. Visualize your favorite memories–of a perfect spot on a beach, of a time when you two felt the magic. Put on some music. Smile, even if you have to take it. Recognize when you’re being too serious for your own good–and figure out how to get back to some of that joy and ease.
  • Ask for what you need. Ask him to rub your shoulders. Ask if he’d go for a five minute walk with you. Ask if he’d hold you when you’re feeling sad or vulnerable. Use your words and believe that you deserve all good things.
  • Whether you have someone in your life right now or not–make the time and space to nurture your own sensuality.  Figure out what that means to you, but bottom line is  to make time for you, make space for just you, give yourself permission to give yourself pleasure (I’ll leave that up for interpretation) whether that’s sexual in nature or involves a few minutes alone with a Dove chocolate bar while listening to Andre Bochelli serenade you in the laundry room.

How does nurturing your love life make you a better caregiver?

It fills up the well of your soul.

It gets us in touch with our physical and soul-full selves.

It infuses us for energy, joy, and even relaxation.

It reminds us we are indeed, still alive.

I hope you’ll be brave enough to enter into this conversation–with yourself first, with your partner, and I’d love it if you’d leave a comment!

It’s time we started talking about what we long for…and a warm, fun, play-filled, healing, tender or rompous (yes, I made up that word) love life is just the beginning…

Have you ever noticed how in a store or a restaurant you’ll talk to someone who has a baby–or you’ll see an elder sitting alone and you’ll start a conversation? Our “bookends,” I like to call them, have a way of allowing others to open up and say, “Hi!” It’s a good thing, too. As fulfilling as those two times in life can be, they’re also lonely. It felt so good to see my babies wave and a stranger wave back–to see them smile. And it felt so good to see my mom’s face brighten when someone commented on her crazy blue petal hat.

Caregiving meant I spent a lot of time with my mother. A lot. A whole lot. And truth is, we needed each other, but we also needed other people in our lives. Sometimes we got fussy with each other just because there wasn’t anyone else around to break our monotony.

Caregivers find it difficult to maintain friendships. We’re not exactly stellar company. Most of us are sleep deprived and we probably need to complain for a good 15 minutes (just to get all the stress out of our systems) before we can calm down enough to have a casual and uplifting conversation that doesn’t include a diatribe about bowel movements.

Why have we lost our conversational skills? Myopic vision. We can’t see past our own situations. Because folks in pain–physical or emotional–can’t see or feel much past their own all consuming issues. Besides, who wants to talk about adult diapers, ER trips at 2am (for no other reason than for gas…), or the latest update on Medicare? We forget it’s a great big world out there and we’re not the only ones going through crap–and that good things are happening, too.

Caregivers either tend to be sleepy (we nod off at the red light), grumpy (we snap at the bag boy for squishing our potatoes, which who knew they could be squished), or we’re weepy (every commercial–luxury car commercials remind us of what we’re missing even though we’ve never thought about zipping through the streets of Rome Italy at 100 mph). 

Our worlds have grown small (unless you count all our new friends at the doctor’s office) and our waistlines have grown wide (can Oreos be considered a vegetable?) Although caregivers might not always be pleasant (talking about myself here) we just need someone who makes us smile, helps us to laugh, and don’t mind if we lean on their shoulder occasionally and ball our eyes out. We also need someone to tell us to STOP our whining, open our eyes and see that planet earth is still spinning and still a pretty snazzy place to be. You know what they say…location, location, location….

I hope you have at least one person who is brave enough to speak the truth into your life and someone who will be there for you–no matter what.

If you don’t have one, then consider reaching out to an online caregiver buddy.

You cn meet them on a caregiving site–Caring.com’s forums, AARP’s chat rooms, or the Alzheimer’s Association boards–all of them have literally hundreds of folks just like you–they’ll get your snarky humor and they’ll get it when you say all you feel like doing is crawling back in the bed. Sometimes a friend is someone who’s a lot like you.

I recently had the honor to peruse the web for the best caregiver stories out there, and I happen to know there are some amazing caregivers who blog, photograph, and share their art and their lives. They open up their curtains so you can peek in. You’ll find stories that echo your own. I hope you’ll check out their stories. http://www.caring.com/articles/best-caregiver-stories-web

Bottom line, the world’s not the big scary place we think it is. We’re all just people bungling around in our own lives. And we’re all a tad lonely.

So break out of your bubble today and give someone a compliment. Take the time to check on someone you haven’t heard from in a while. Play peek a boo with a toddler who’s in line in front of you. Hold the door for an elder–and give them a smile.

Be the first to reach out–and the world will reach back.

You just might make their day.

 

“Only the hand that erases can write the true thing.”

Meister Eckhart

Let’s face it, most days a caregiver’s positive outlook sags a bit. Monotony, worry, and sleep deprivation doesn’t exactly add up to being “Miss Perky.”  One thing I can say for my mother is that she had a healthy dose of self-esteem, and that has a way of rubbing off on folks, me included. She even had a theme song-”I love me, I love me, I’m wild about myself…”

She sang those lines to me all my life, and she’d always smile at her own cuteness after. I kinda figured she made up those lines, seems like something she’d do, but come to find out–she didn’t. It’s a real song. I can’t quite figure out who wrote it–the internet trail is hard to follow. I think Tiny Tim sang it in the 60s, but the recording I found is from the 40s. That’s probably when my mother heard it–and even after dementia took most of her memories, this little song stayed put.  And even though she eventually forgot how to sing I now carry this tune forward. My children know it well and now I have a whole new generation to sing it to–three granddaughters who will, if I have anything to contribute, have rock solid great self-esteems.

See, my mother had a whole life way before I ever got there. Most children, even adult children forget that. She was 54 when she adopted me. She had grown up, fallen in love, got married, had her first (secretary), second (executive secretary) and third job (minister), and she had survived the  depression, World War II, health scares,and  her mother’s death–all before 1965, when she became my mama.

So, I find out that this little ditty was recorded in 1940 by , and it regales to love of self. Apparently  this isn’t a new concept, but it’s an important one. My mother had lots of faults (don’t we all?) but being negative, depressed, or ever being called shy or quiet wouldn’t make her list. She was tall and loud, opinionated, and funny. Thank goodness for funny, because funny kept me from losing it on her more than once!

So if you’re caregiving a bigger than life character, sit back and enjoy this song–and if you just need a pick-me-up and good dose of self-love, you’re in for treat.

“I LOVE ME”

http://www.youtube.com/watch?v=5DsSQFVRrTc

I’ve posted the words, which are beyond adorable. It’ll perk up what sags:)

When people write their songs of love they write of one another
It’s always sis, or ma, or pa, or sweetheart, wife, or brother
But love songs that they’ve aimed at me have all gone on the shelf
I don’t think that it’s fair, so now I’ll write one for myself.

I love me, I love me, I love myself to death
I love me, I love me, till I’m all out of breath
I stop at every slot machine that I should chance to pass
And give myself a hug and squeeze as I look in the glass!
Oh, I love me, I love me, I’m wild about sweet me
I love me, only me, so I’m content you see,
I like myself with such delight
I take me right straight home each night
And sleep with me till broad day light
I’m wild about myself.
I love me, I love me, my birthday’s once a year
I love me, Only me, and when my birthday’s near
I go with me and buy myself some gifts to put away
Then I surprise myself with them when I wakes up that day!
I love me, I love me, I’ll marry me some day
Right away, Saturday, I’ll give me all my pay
With me I like to make a date
To meet myself at half-past eight
If I’m not there I never wait
I’m wild about myself.

I know a girl who has the boys proposing by the dozen
Among her lists are rich and poor and even one lone cousin
But when she speaks of love to me I treat her with disdain
I loudly shout, “There’s someone else!”
And then this wild refrain:

Oh I love me, I love me, and every place I go
I love me, I love me, and at the movie show
I take myself right by the arm and push me through the crowd
And listen to myself repeat the titles right out loud.
I love me, I love me, I love to squeeze my hand
I love me, I love me, It always feels so grand
With me I get right in my tub
I let myself give me a rub
Oh how I love to feel me scrub
I’m wild about myself.

I love me, I love me, I’m wild about myself
I love me, I love me, my picture’s on my shelf.
You may not think I look so good, but me thinks I’m divine
It’s grand when I look in my eyes and know I’m mine, all mine!
I love me, I love me, and my love doesn’t bore
Day by day in every way I love me more and more.
I take me to a quiet place
I put my arm around my waist…
If me gets fresh I slap my face!
I’m wild about myself.

There are lots of inevitable caregiving firsts you don’t want, and if you want a good first you’ve got to make it happen.

Some firsts are hard.  The first time your mother falls–and you know that it’s only a first of many. The first time your dad forgets your daughter’s name. The first time you wind up in ER and pull an all nighter only to realize there’s nothing anyone can do so you return home more exhausted and stressed than ever. The first time you finally realize your sibling isn’t going to be all that much help when it comes to caring for your parent. The first time you say the word “Alzheimer’s,” or “Cancer,” or “Hospice.”

Caregiving is filled with firsts you don’t want, and there’s only two ways to get a first you do want:

How do you make a good first? Be aware or make it happen. 

Let’s back up. Honor a tough first. 

You have to acknowledge the toll they take on your soul. It will extract a price. Some you knew were coming and you avoided, denied and delayed. Others hit you in the back of the knees like a cruel two-by-four slamming you to the ground. Don’t fight it. It does no good to rush past it or ignore it. Go to your car, your closet, hide in the laundry room–and sob. Wipe the tears as you drive.Scream into a pillow. Slam a cabinet door. Use your rage. Get it out. Call a friend and let the silence between comfort you more than words ever could.

After you honor a tough first, get on with  life. 

Don’t mull in your loss, your sorrow, your aching soul. I know I sound hard, but think of it like this: Think of Cher in Moonstruck. Remember when Nicholas Cage is moaning and griping and feeling sorry for himself that he lost his hand and can’t get a girl and being a good Italian that she is (feisty as hell and tell it like it is)  she slaps him across the face (twice!) and yells, “Snap out of it” ? It’s the wake-up slap he needs. I love that scene. It’s a shock, but it’s a good shock.

Enjoy this clip of Cher’s double slap: http://www.youtube.com/watch?v=0x-fkSYDtUY

So give yourself a wake up slap.

Caregiving sucks (at times).

It’s packed with exhaustion and heartache, and if  you let it, it will keep whacking you in the back your knees and blinding you with sorrow and grief. Unless you figure out when to reel with hurt and loss and when to look yourself in the mirror and get tough. Only you know when.

Then, make your own firsts

Did you know that our brains LOVE firsts? We remember our first kiss, first car, first divorce (smile),. Our neurons fire faster when they don’t know what’s coming next. We pay attention. We gobble up the details. We regale the stories for years to come. Firsts aren’t reserved for the young, but as routine and monotony fill our lives we have to fight for those firsts.

 

Create your own caregiving firsts: 

  • The first time you sing in the car together practically screaming the words to your favorite Broadway tune.
  • The first time you sing your mother to sleep.
  • The first time you call for respite and take yourself on a date–and you come home to find that your mom/dad/spouse actually survived and even enjoyed their time spent with someone other than you.
  • The first time you stood up to a doctor or nurse.
  • The first time you ditched a doctor’s appointment and went to Dairy Queen together instead.
  • The first time you stood up for yourself–to your mom/dad/spouse–and you felt respect.
  • The first time the two of your danced in the kitchen.

When is the last time you did something for the first time? 

 

 

 

 

 

What makes a good blog? Great information, reliability, connection and resources, honesty, practicality and humor are the traits I look for when I’m blog hunting–and so it’s a pretty big honored to be considered in the top ten online influencers in Alzheimer’s. Caregivers rely on the information they find on the web to be reliable and usable–and if it’s relate-able, then that’s all the better.

Want to know the top ten Alzheimer’s blogs? Read below. Every blog/website offers a unique perspective that give caregivers and their loved ones the best information they need.

SharecareNow Names Top 10 Online Influencers in Alzheimer’s Disease

 

– Touching the Lives of Patients, Caregivers and Families through Personal Stories, Expert Knowledge and Credible Information –

 

(Atlanta, GA, and San Francisco, CA – November 5, 2012) – Representing a diverse group of caregivers, celebrities, reporters and bloggers, the Top 10 Online Influencers in Alzheimer’s Disease list was released today in an effort to provide valuable information and resources to the millions affected by the disease, as well as those caring for them.

“Caring for someone with Alzheimer’s can be a physically, emotionally and financially challenging experience, making access to reliable information about various stages of the disease all the more important,” said Kevin Soden, MD, MPH, Sharecare editorial advisory board. “Recognizing the most influential and credible individuals in this field during November’s Alzheimer’s Disease Awareness Month serves as a powerful opportunity for us to support not only those diagnosed with the disease but also their loved ones and caregivers.”

To further support the Alzheimer’s community, Sharecare today announced the addition of the Alzheimer’s Foundation of America (AFA) to its network of experts.  As a new content collaborator, AFA will address topics about Alzheimer’s disease and other dementias, including how to care for a loved one with the disease.  According to the AFA, 5.1 million Americans may have Alzheimer’s disease and as many as four family members may act as caregivers for each individual with the disease.

 

To be included in the SharecareNow 10 – Alzheimer’s Disease list, individuals must have demonstrated a consistent impact on Alzheimer’s-specific conversations online over the past year. Top influencers have an active online presence across multiple interactive channels – including Twitter, Facebook, video and blogs – and address a wide range of Alzheimer’s topics, including symptoms, treatment and care. Influence is measured and quantified through a proprietary algorithm based on more than 70 individual metrics, including Alzheimer’s disease relevance, syndication, presence and reach.

 

The following top influencers make up the SharecareNow 10 – Alzheimer’s Disease list:

 

  1. 1.      Lori La BeyAlzheimersSpeaks.com
  • Founder of Alzheimer’s Speaks and host of the radio show Alzheimer’s Speaks

 

  1. 2.      Leeza GibbonsLeezaGibbons.com
  • Advocate for Alzheimer’s patients and caregivers and founder of Leeza’s Place; former host of Entertainment Tonight and current host of America Now

 

  1. 3.      Elayne ForgieAlzheimersCareAtHome.com
  • President and CEO of Alzheimer’s Care Resource Center and founder of ElderCare at Home and AlzheimersTraining.com

 

  1. 4.      Sherri Snellingblog.alz.org
  • Founder and CEO of the Caregiving Club, Chairman of the National Alliance for Caregiving and Senior Director at Evercare, an extension of the UnitedHealth Group

 

  1. 5.      Gina KolataNYTimes.com

 

  1. 6.      Stefanie Bonigut, MSWalznorcalblog.org
  • Social worker and Family Care Specialist for the Alzheimer’s Association

 

  1. 7.      Elizabeth Nolan Brownblog.aarp.org
  • Associate editor to the women’s health and wellness site Blisstree.com and contributor to the AARP Blog

 

  1. 8.      Bob DeMarcoAlzheimersReadingRoom.com
  • Alzheimer’s caregiver and founder of the Alzheimer’s Reading Room, a site devoted to educating and empowering Alzheimer’s caregivers, families and the wider Alzheimer’s community

 

  1. 9.      Carol O’Dellcaroldodell.wordpress.com
  • Author of the blog “Caregiving, Mothering Mother and More,” contributing editor at Caring.com and author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

 

  1. 10.   Rose LamattRoseLamatt.com
  • Blogger and author of Just a Word: Friends Encounter Alzheimer’s and Is Life One Big Goodbye; contributing writer for the Alzheimer’s Reading Room

 

A downloadable version of the SharecareNow 10 – Alzheimer’s Disease list can be found here: http://www.sharecare.com/static/sharecarenow-alzheimers-top-ten-infographic. Additional information, including full bios and the methodology behind the influencer list, is available at http://now.sharecare.com.

 

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