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Archive for the ‘Alzheimer’s’ Category

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

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

So Seth,thank you.

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

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

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

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

You done good, Seth Rogen. You done good.

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

 

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In Marianne Williamson’s book, Divine Compensation, the author talks about a time when she lost a large sum of money because she didn’t properly market a presentation that meant a great deal to her. Crying in her father’s arms she told him that she’d lost $10,000, and she muttered how she was ever going to recover financially or reputation wise from this catastrophe. He just smiled and told her to say, “It’s okay. I can absorb the loss.” That got me thinking about a different kind of loss. The loss we endure when a loved one dies.

It hurts. It sends us reeling with pain, regret, guilt, and plain ole’ missing someone so dear to us. Sometimes the death of our loved one seems so unfair. The death of a child is beyond my ability to even comprehend. We lose loved ones in car accidents, too soon to cancer, and sadly, to suicide. Such losses seem truly unbearable. How do we even begin to absorb a tremendous loss?

First, there’s no right–or wrong–way to grieve.
It just is. I’m not about to give a lesson on grieving. It’s personal. It’s primal. And all I can say is that your body and spirit probably know how you need to do it–and it might take longer than you think, and it will probably take you to some pretty dark nights of the soul.

What is clean pain?
Clean pain, according to the Association of Contextual Behavioral Science, is when we accept pain. We don’t try to make it more–or less–than it is. We acknowledge it. We let it take us. We know that we will be in pain for a time. But we also expect the pain to subside. We don’t add to it–by fighting it, by denying it, by blaming or demanding or asking “Why me” a thousand times. We choose not to dwell on it, growing more and more anxious, creating scenarios that may never happen. We simply know that we are of this earth and that there will inevitably be times of physical and/or emotional pain. In other words…we absorb it. Let it in but see our souls as a sieve. The excess pain that cannot be taken in will be sifted and allowed to leave.

It’s easier to have clean pain when death is expected. I grieved my mother’s diminishing life and her forthcoming death long before it got here. She was 92. She had Parkinson’s, Alzheimer’s and heart disease. I did not wrestle with the fact that it was her time to go. I tried to make her last months comfortable and meaningful. I stood as they wheeled my mother out of our home. I had spent the last three weeks by her side assisting her as she passed over. It was grueling. It was not easy by any means. But it was right. I stood in the driveway and watched them lift the gurney into the Hearst. I watched as the taillights left my view. I bundled her sheets and walked to the garbage. Then I walked down to the river. I cried and I breathed. My last parent was gone. Not only did I grieve her. I grieved the shutting of this door. The next few months felt as if I had been charred in a great fire. I felt antsy and useless. I floundered and waited for hope, for life, for meaning to return.

As far as clean or dirty pain. My mother’s passing was clean. And since that time I’ve lost others I love. It’s not always a clean pain, but at least I am aware that that is what I choose. Not to fight with death. To absorb the loss. My heart and mind is boggled at times. I can’t fall into the quagmire of the whys. There is no why that will make sense to a hurting, grieving, all encompassing loss.

But I do know that the more I allow, the more I absorb the losses that come my way, and the more that I (to quote Byron Katie) “love what is,” the more at peace I am.

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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…

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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.

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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? 

 

 

 

 

 

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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.

 

A 

About Sharecare

 

 

 

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You don’t know what to say. Your friend has shared they have Alzheimer’s, or you found out from their spouse or from another friend. You don’t know how much they remember. You don’t know how advanced it is. You don’t know how to love them and be there for them. So you do nothing. You act like it’s not there, but it is. Or, you find yourself calling less, keeping the conversation light, and in time, you don’t mean to but you know that on some level you’ve pulled away. It’s difficult to learn how to be a friend to someone who has dementia/Alzheimer’s.

I know because I’ve been on both sides of this. When my mom was living with me I had several neighbors who avoided us–regularly. They’d wave, be cordial, but I could tell that they were afraid I’d ask something of them, something they either didn’t want to do or were too busy to do. Of course, I’m speculating. I don’t know exactly what they were thinking, what their motives were, I only knew there was this unsaid un-comfortableness.

It used to make me angry or hurt or something. I needed them. I needed a friend. My mom needed people to care about her, and yeah, I could use a little help or relief once in awhile.

And now, I’m experiencing it all around me. Neighbors, friends, community connections…I hear of someone with the “A” diagnosis, and now I, even with all my experience, find myself reticent as to what to say or do.

The other day I had a dear friend tell me she had terrible news–she’d finally (after years of not knowing exactly what was “wrong,” had been diagnosed with Alzheimer’s. This was the third time she had told me the news. Each time with the  blow to the chest reaction she probably experienced when the doctor told her and her husband for the first time. I held her, reeling. I held her a long time, standing in my driveway, wanting somehow for my strength and comfort to pass through me to her. I told her I knew. Yes, I knew.

I had decided a long time ago with my mother to neither lie, play along, or enter into their delusional world.

Why? Selfish, really, or at least in some ways. I decided that to keep us both “safe” (and from becoming permanent residents of crazy-land) that it might be best if at least one of us kept one foot on the ground–over here. I’m not usually that practical but it messes with your head and your heart to play with another person’s delusions.

I held my dear friend and I told her it would be all right. That she was and is still my friend, and it’s okay if she forgets my name. It’s okay if she waves at me and draws a blank. It’s okay. I’ll remember for the both of us.

And yet, I must admit that at times I avoid her. I don’t exactly know how to jump in and out of her world. I feel like I do playing double dutch jump rope. Two ropes swinging in my face, I have to get my timing, make a couple of false starts, avoid, delay, and then duck and jump in order to plant myself into the middle of her world.

That’s why I hate about disease, any disease really. I hate that it isolates us. I hate that pain–physical or mental–separates us, overwhelms us, and keeps us like a violent abuser away from health and goodness because if we get too close someone might see–and we just might want that wholeness for ourselves. We just might have hope.

I know she needs me. I want to bring her joy and peace. I’m not afraid of the disease, and that makes me somewhat valuable. But I have to be honest, I don’t know exactly how to be her friend.

I know that it’s important to remind her that she is and will always be “Lydia” (fake name). That her essence, her laugh, her smile, her way of seeing the world is and will always be in many ways, true and will remain. I know that in time she will forget so much–what keys are for–what does that black box at the end of the driveway do, that I will become no more than that nice girl who always waves, and that some strange man keeps trying to sleep in the bed with her each night. I know what is to come. I just don’t know when. But I also know that for a very long time, if not until the end, that  something of the essence of my friend will remain.

And that is perhaps the gift I have to give her–to see that kernel of my friend long after others lose sight, get frustrated, get angry, give up or let go. I will still see her in the smallest of gesture, in the slightest of smiles. I will remember.

I’m still figuring out what my deal is, why it’s so hard to approach her at first, what my hangs ups are about all of this. I’m still asking myself what it is she needs and what I have to offer. For one thing, something as simple as to share a cup of tea. She still likes to eat. She still can enjoy a bouquet of sunflowers for her table. We can still laugh or go for a short stroll. It isn’t that she needs much, just something. To connect.

And all I know to do is to keep on pushing past this initial awkwardness. To show up. To open my arms. And to love her(and love myself)  today–just as we are.

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Caregivers need to talk to other caregivers because no one else can truly understand what they face day in and day out. I recently spoke to a group of caregivers at Christ Episcopal University and every one of them needed to be there–for different reasons. Some needed to vent. Others had questions about Alzheimer’s behavior, about forgiving the past, about grief. Some just needed to be in a safe place where they felt accepted, understood, and didn’t have to hide just had  crazy/bad/bleak/or weird their lives had become. No one but another caregiver knows about caregiver stress and how it can build and build. Not their doctor, their less involved siblings, not even their pastor or their therapist–unless they happen to be caregiving, too.

Sadly, our friendships oftentimes suffer in our caregiving years. We’re not exactly great company–sleep deprived, fussy (I was, I can’t speak for you), and a little self-absorbed (in other words, we need to do a lot of venting). It’s important to preserve those long-term friendships and one of the best ways to do that is by not exploding/emoting all over non-caregivers–at least not at volcanic/molten lava proportions. Other caregivers will get when you’re having a “crap day,” I used to call them, and be more patient and relating to your tears, screams and whines.

It’s easier now than ever for caregivers to connect. In the past five years there’s been a boom of care related online forums. What’s great about these is that they’re 24/7.  Caregivers need that. Not only are they up at the most ungodly of hours, that’s usually when they’re the most ticked off, stressed out, and pushed beyond all human endurance. That’s when they need the anonymity and immediacy a forum provides.

Today, I’ll be sharing with caregivers over at Caring.com. I’ve written their Family Advisor column for years and now I am a contributing editor to their home-care newsletters. We’ll be talking about caring for our parents, and since it’s close to Mother’s Day, I’m sure the conversations will gravitate toward our mothers, their care, and our complex and so important relationships with them.

Feel free to join us if you are happening to read this:

It runs May 11th, 2012 from 1-3 Pacific Time under the Caring for a Parent forum, and will also be on Facebook:

http://www.facebook.com/events/342572865796240/

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YES!

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

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

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

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

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

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

Laughter and sleep–ain’t nothin’ better…

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

~Carol O’Dell

Author, Mothering Mother, available on Amazon 

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Dick Clark died April 18, 2012 of a massive heart attack. He was 82 years old and is considered America’s “oldest living  teenager.” My question is, could his heart attack have been avoided? Could mine–or yours? Heart disease remains the number one killer in America. It steals the quality of our lives and takes our loved ones from us too, too soon.

We can’t get around the facts. Americans suffer some of the highest heart disease rates in large part due to our issues with obesity and lack of exercise. I’m the first to admit that it’s tough to get in shape, to give up certain foods and hit the gym on a regular basis, but I also know after witnessing heart disease with my dad that heart disease doesn’t just kill you fast, it’s something you suffer with, something that impacts the quality of your life for years, something that can alter your loved ones and caregivers lives.

If you remember, Dick Clark suffered a stroke back in 2004, which meant had arteriosclerosis. It silenced the voice we had grown to love and count on. What you may not know is that he also had type 2 diabetes. “Two-thirds of people who have diabetes die of either heart disease or stroke,” Dick Clark shared a few years ago. “That was enough for me to stand up and say, ‘Whoa, I’m in that group…’ ”

Dick Clark is truly representative of what is happening in America, and especially to our men. Dick Clark wasn’t particularly heavy, so is heart disease and all of its “side dishes” (strokes, diabetes) come with just the “build-up” (literally) of life? Just how hard do we have to work at staying healthy to avoid this early killer?

Do we give up fat? Meat? Salt? What else? Do we hit the gym 30 minutes a day? One, two hours? What’s it going to take? Diligence, yes, but also a bit of know-how. Quality of life over quantity.

First, *and I can only speak for myself, it’s time to drop all processed foods. They’re simply no good. I heard Heidi Klum say recently that she “avoids anything that comes out of a box or a bag.” I also need to have a few meatless days a week, but it’s not just about going meatless, it’s also about what you replace that meat with–heart healthy beans and steamed or roasted veggies.

What stands in my way?

Stress and exhaustion.

I reach for the bag or the box, for the greasy/juicy hamburger when I’m tired, when I’ve worked too long, when I’ve let regret and worry  (living in the past or in the future avalanche my thoughts and bury my body in oh so familiar bad habits.

As I grow older I am even more aware of how much I value sleep and how being crazy-busy (as I used to like to call it as if it were a badge I wore proudly) just isn’t cutting it any more. I used to equate busy with important, but even I no longer believe my own lies (illusions).

I’ve also found that I can’t bully myself into a healthier lifestyle.

It’s got to be about joy, not guilt or shame.

Eating beautiful, clean foods. Learning to celebrate with a bowl of cherries and a handful of almonds instead of a red velvet cheesecake (the occasional bite is fine, but restaurants won’t bring you just a bite!)

It’s about dancing any hour of the day  (I take Zumba classes). It’s about long walks, meandering bike rides, and even a few challenges–signing up for a 5-K.

It’s about laughing, and recognizing stress and exhaustion before it’s tied me to its bumper and taken me on a cross-country tour. It’s about turning OFF the media and crawling into bed for a glorious night’s sleep BEFORE I fall asleep on the couch at midnight in a TV remote surfing coma.

It’s about being content, letting go, forgiving, and loving what is. I still struggle, still get worked up, still default into panic mode, but I am finding that it’s lost its appeal. I’d rather lay down my frantic thoughts. I’d rather not get worked up about what s0-and-so said. More often than before, I’m choosing quiet joy.

I know that something–heart disease, Alzheimer’s, who knows what–will eventually get me. We don’t just die. We die of something, but that something doesn’t have to live with me and rob me of precious years, even decades. I’ve always said I want to go out big–a bungee cord that snaps or the rip cord that doesn’t rip when I’m 92. I want my friends to spread the word of my demise by saying, “You’ll never guess how the ole’ gal left this world…”

Can I prevent my own heart attack? Can you prevent yours? Is it too late?

No, I don’t think it’s too late, but it does take the proverbial wake-up call. It does take a deep, life-changing/thought-changing jolt that reminds us again and again, even when we’re tired, even when we’re stressed, to make that first, and then another, and then hundreds of little choices and changes, not simply to avoid “the big one,” but to live now–cleaner, sweeter and simpler.

I miss Dick Clark already, but I realize now that I’ve missed Dick since 2004–eight years that “America’s eternal teenager” struggled with the ripple-effect of America’s number one disease. Dick, I danced to American Bandstand all those years ago and in my heart we’ll always dance.

~Carol O’Dell

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

Available on Amazon (hardback and Kindle)

Resources:

http://www.cdc.gov/heartdisease/facts.htm

Read more: http://www.foxnews.com/health/2012/04/18/dick-clark-had-history-heart-disease-type-2-diabetes-before-death/#ixzz1sURMLApY

http://www.cdc.gov/heartdisease/facts.htm

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