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Archive for the ‘caregiving’ 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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Do we always get along? Hell, no! That’s what I wrote in a recent article that’s now featured on The Shriver Report.org. (http://shriverreport.org/mothering-mother-caregiving-dementia-carol-odell/) People tend to romanticize caregiving–people who aren’t in it, or who haven’t been in it for very long. It’s the difference in making a movie such as Black Hawk Down compared to actually being in a real time war–bullets, IED’s and raining shrapnel down on your head. Caregiving days aren’t filled with marshmallows and clouds (all fluff). While there are tender moments when you can hear the angels sing, when you and your loved one have a very real and touching moment–these are rare because face it–relationships are, for the most part, messy.

Caregiving is part one part grit and two parts guts, and if you’ve always had issues with confrontation, then guess what? Here’s your own personal scavenger hunt because you will confront everybody from your sister who doesn’t want to pitch in–time or money-wise, to the home health aide who grabs your mom’s arm just a little too rough, and onto the CNA who whams your mother’s leg into a metal part of the underside of the bed and cuts her leg on the day of her discharge…and then tells you that you’ll have to go back to the ER (with its two hour wait and enough flu germs to warrant a quarantine) in order to see if her leg is broke (that really happened to a mother of a friend of mine).

Women are still, the primary family caregiver. Not that there aren’t amazing men out there–spouses, sons, brothers who are stepping up and never thought to do anything other than care for their loved ones. I get to meet these guys and let me tell you, they’re sexy. Nothing is more attractive than a good man who has integrity and heart, and I ought to know a thing or two about this because I happened to be married to one. Still, when it comes to sheer numbers, women take on the brunt of the caregiving experience. They’re single, divorced, dealing with their own health issues, or depression, working, raising kids and grandkids, and on top of all that–they’re caring for a parent, and sometimes two.

Stats on Women as Caregivers from the Family Caregiver Alliance/National Center on Caregiving:

Estimates of the percentage of family or informal caregivers who are women range from 59% to 75%.6, 7


The average caregiver is age 46, female, married and working outside the home earning an annual income of $35,000.8


Although men also provide assistance, female caregivers may spend as much as 50% more time providing care than male caregivers.9

When I said, “Hell yes, to caring for my mom,” I didn’t mean that caregivers have to go it alone–nor should they. Caregiving is a team sport. You simply CAN’T meet all of your loved one’s needs. You can’t. They need to be surrounded by a community. You can’t begin to meet their physical and relationship needs, and in fact, you do a great disservice to you both by not opening up your heart and our home to others. Sometimes it’s simply because it’s a bruise to our ego to admit we can’t do it all, and other times we don’t even know where to begin to ask for help. It’s also true that you or your loved one may not find a good fit right away. Whether you call a local church and ask for a volunteer, call your local senior center or your local/regional Council on Aging to find out what resources are available, the key is to not give up.

Caring for my mom would eventually include my family–husband, daughters, her friends (one who graciously came down so that my family could slip away for a weekend), relatives who called and offered prayers and encouragement, home health aides, and eventually the good folks (chaplin, nurse, home care aides, coordinator, etc.) at Community Hospice of Northeast Florida. It took all of us–and it gave us purpose and a common connection. Saying “Yes” to caregiving also means saying “Yes” to the circle of care you and your loved one needs.

The Shriver Report.org. The Shriver Report.org is launching a site for women, by women (mostly) talking about subjects that matter–to us.

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I have several friends who have recently loss their spouses or a parent, and at the end of an oftentimes long, exhausting, and heartbreaking journey, they find themselves stepping into the role of a caregiver once again. Most of us have more than one parent. We have in-laws. We have other family members who a struggling with everything from cancer to mental illness–and disease and the aging process doesn’t care whether you feel like caregiving. It doesn’t take into account that you just spent the last two years in and out of hospitals, rehab, physical therapy and all the less than fun but necessary activities that engulf your life. Caregiving can show up in your life (and probably will) at the most inopportune time.

What do you do?
Do you say no to a loved one who may have little, if any, options? Do you (can you) say, “no thanks,” I’m still grieving/need to take care of my own health/financial needs right now/I’m an completely bone dry and have nothing to give???

No. You probably don’t say, “Caregiving again? I’ll pass.”
Before you jump into caregiving again headfirst, I ask you to take a deep breath.
Now, plan.
You’ve learned a thing or two.
You know all too well just how sucked in you’re about to be.
You know all too well the wild world of prescription screw-ups, back-to-back doctor visits, 2am ER stints, botched lab results, infuriating insurance issues, and the dreaded orange vinyl chair hospital nights that somehow lead to hospital weeks.
So use what you know.
You might need to and want to say yes, but do you have to say yes to everything?
Do you have to move in/or they move in with you?
Are you prone to ignoring your own health/financial/relationship needs?
Are you afraid of what’s going to happen to you and your life if caregiving takes yet two, three more years of your life?

Don’t get me wrong–I am a 100% advocate of caring for our loved ones.
I firmly believe that family (for the most part–there are always exceptions) should care for family and then that care ripples out from there–church, friends, extended family members, hired or volunteer care) as needed. I ache at the thought of family members who simply can’t be bothered to miss a day of work, or can’t give up a weekend to make sure that their loved one’s legitimate needs are met. As a caregiver inspirational blogger and speaker I’ve heard lots of folks who have sisters/brothers adult children and others who refuse to contribute to family care, but I also see folks who give too much, who never say no, not even to a demanding, dramatic person who expects to be the center of everyone’s universe.

What I’m speaking of is to glean from the wisdom that comes by experience.
Reflect back on your previous caregiving time.
When did you give too much?
When did you ignore your own health issues, relationship or career issues?
Does that continue to effect your life?
Do you have a plan for meeting your own needs while caring for others?
Are there things/people you lost you can’t get back?
Did you care-give at times when it wasn’t truly needed to the extent that you gave?
Are you now able to speak up when you need to?
Can you step back and look at the whole picture–and count “you” into the equation?
Can you say no when you need to and not fall into a quagmire of guilt?

Honestly, being a caregiver the second time around can be a good thing.
How, you ask?
You’re stronger.
You’re not flung here and there by drama and trauma.
You don’t think doctors and medical personnel are demi-gods that can never be wrong and should never be confronted or disagreed with.
You know that you have to step back when you feel so drained that resentment, anger, and exhaustion threaten to strip you of all reason and ability to care for anyone, particularly, yourself.

Caregiving the second time comes with the quiet realization that (in some situations) your loved one will die.
It’s tough to say that word, die, but that’s what we do. All of us. Someday.
So, caregiving…again, means that you’re not so scared.
You make this time mean something.
You can’t keep them alive, you know that this time, but you can make life sweet.
You can provide companionship.
You can be their advocate, their voice.
You can honor their wishes.
You can make sure they get the pain medications they need.
You can be present when it’s time.

I wish, for you, that if you’re just getting out of a caregiving situation, that you would have a break. That you’d get to attend to your own life for a little while–and even have some fun–but we don’t always get to decide when caregiving will circle back around. But I do know that you have changed–so trust that you will know what to do.

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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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Linda Ronstadt announced to AARP that she has Parkinson’s–and can’t sing a note. Linda is the voice of my youth. I sang Desparado more times than I can count. You’re No Good, Don’t Know Much…and part of me is sad to think that this song bird is silenced. In the words of a fellow Parkinson’s thriver (he’s more than a survivor), Michael J. Fox, “Parkinson’s a disease that keeps on giving.”

We know that Parkinson’s causes hands to shake and feet to shuffle, but there’s a whole lot more going on. It’s a neurological disease that affects the brain and the nerves–and nerves serve as a highway that signal to the body its movements and function.

Parkinson’s is something that I know a thing or two about. My mother had PD (as she called it) for the last ten years of her life.

What is Parkinson’s?
Here’s a simple lay-person definition.
You get Parkinson’s when your brain doesn’t produce enough Dopamine, a chemical it needs to help the firing mechanism in your nerves. Without enough Dopamine your nerve endings don’t get the message of what to do. That causes all kinds of problems. Parkinson’s medication is mainly a synthetic type of Dopamine. It usually relieves the symptoms for a few hours but must be taken regularly. It never fully eliminates the problem, but it helps, and works best if taken on a regular schedule. Some days are better–or worse–than others. No real rhyme or reason…

According to Mayo Clinic Parkinson’s symptoms include:

Tremor. Usually it starts in a limb–and it starts at rest–a shaking leg, “pill rolling” rubbing your fingers together repetitively), head movement, knee bouncing.
Slowed movement (bradykinesia). Known as the Parkinson’s shuffle. Walking, getting out of a chair, cooking, dressing maneuvering across a room are all affected. Changes in flooring can virtually freeze a person with Parkinson’s since the brain is trying to process how to handle it–giving it another overwhelming task to perform.
Rigid muscles. Muscles become stiff and range of motion can be limited, so lifting your hands to put on a shirt can be difficult, or bending. Soreness can also accompany the stiffness since the muscles are working so hard and yet can do so little.
Impaired posture and balance. Your muscles are misfiring and grow rigid and this can lead to becoming stooped over. Balance is a HUGE problem with those who have Parkinson’s. Not only do they feel imbalanced, but because of their uncooperative and stiff muscles fall hazards are common. This can lead to needing someone in the home or traveling with the person with PD in order to prevent a devastating fall.
Loss of automatic movements. Known as the Parkinson’s mask, a person with Parkinson’s may lose their ability to blink, smile, use gestures when talking or show any emotion, which can affect their communication needs and relationships. They also might not swing their arms when they walk, which also causes an imbalance.
Speech changes. Many folks with Parkinson’s find that their voice grows softer. They may also slur, blurt or not be able to maintain a natural rhythm or tone to their speech, and they may lose their ability to sing and have a pitch to their voice.
Writing changes. Most folks with Parkinson’s find writing a challenge. Their handwriting grows smaller and eventually illegible.

Is there any good news?
Yes, there is!
I won’t kid you. This is one tough disease that affects every aspect of your life. It takes enormous fortitude and patience from you, the person with PD, and from your family members whose lives are also affected. You may (you will in time) have to give up driving, perhaps even cooking (how come they never recommend you give up cleaning?) and you may need help getting dressed, going to the doctor, and you might need to consider not living alone. All that is overwhelming, but I ask you to look for every possibility that some good can come out of this.

So, here’s the good news.
You need people. That’s a good thing. You get a buddy to hang out with. We need to be needed, so trust that whoever is in your life to help you is there for a reason, and that they’re getting something out of it, too.
You haven’t lost your sense of humor. If you have, go find it. It can get pretty darn hilarious trying to get your shirt on for 20 minutes only to find that you have it on backward and inside out–and you kind of like it that way!
Embrace the chaos. Curse, cry, scream, laugh it off. It’s your life, so hell, make the most of it.

And one good thing–you can dance.
I’m not kidding. Dancing, yoga, tai chi are all things you can do. Ironically, your brain can actually grab onto the flow of music and you can move with fluidity.

Let me tell you about Kate Kelsall. She’s a gal who has had Parkinson’s for over ten years now. She’s also a blogger and a wife and whole lot more. She got PD in her early 40s and her enthusiasm for life amazes me. Her blog is called Shake, Rattle, and Roll–and that’s just what she does.

Here’s a short note for Linda:
A few million of us are thinking of you today. If thoughts are a form of love, and I happen to believe they are, then a whole lotta love and support is coming your way.
Yes, your news makes us a bit nostalgic, but in our hearts, you’ll forever be our song bird.
So sing a new song. Dance, love the people who are in your circle, and open wide and let them love you back.

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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?”

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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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