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Archive for the ‘hospice’ Category

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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What to say at a Memorial Service.

If you typed these words into your search then you are seeking help to find your words–words that capture all you feel for a loved one, a loved one who is no longer with you. I hope this helps.

Forget dates and facts–where he/she born, died, went to school, what job he or she had doesn’t need to be said–include it in a program if you feel it needs to be said.

Tell a story or a mosaic or small tales. One person can combine several stories in their talk or you can invite several speakers to capture various times of that person’s life. Some like to tell a story from childhood, another from young adulthood, another from their parenting years, etc., slowly building a whole life. Others just tell one really good story that sums up the person in such a way that you leave knowing this soul in such a hilarious/brave/tender way that you’ll always carry them with you.

Gather stories from their childhood, a story about one of their struggles, a time they messed up (keeping it vulnerable and real touches hearts much more than acts of valor) tell about a funny or scary time. Before you talk make a list of their personality traits–good and oh so human: generous, stubborn, easy going or tends to jump to conclusions–then find a story that illustrates these traits.

Paint the whole picture. It’s okay that they weren’t perfect. No one is. It’s okay that we remember them as they were–flawed, sometimes heroic other times less so. It’s okay to say what you’ll miss–their crazy-loud sneezes, the way they always squeezed your shoulder when they knew you were having a bad day. Go for examples–not just abstract words (they were kind, sweet, silly-show it instead).

Let people remember.
Use photographs or songs.
Hold up an object they loved–something that reflects them in a unique way.

Laugh.
And cry.
It’s okay, even good to run the gambit of emotions.

Let people walk away feeling they learned something about this person–something they might not have known before. Refer to the things they loved–their favorite songs or poem or movie line you can quite, that they loved gas station coffee, always wore the same old ratty house shoes to go grocery shopping, loved sunflowers and grape popsicles and sang Queen in the car. Make them real.

And end reminding those who have gathered that this person who is now no longer physically with us will forever be remembered–and the more we tell their stories, the more we laugh at their antics, allow them to continue to be a part of our lives because they lived, really lived, warts and all, makes our lives better.

Let your last words be words that leave the audience grateful for having known this person–and grateful that life is indeed fragile, unpredictable, surprising and complex–and that every day is a rare and fleeting gift.

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I finished my blog, “How to Live and Die Well” and while I meant every word, my sarcastic side was reeling.  Admit it, most of us will leave this earth kicking and screaming ( at least on the inside). We don’t want to eat our veggies as much as we’d prefer to dive into a bag of Lays, and aren’t there some days when you want to embrace your inner grump and blast the world? So here’s my comedy version–and on some/most  days–it’s a tad closer to the truth.

How to Live a Horrible Life:

  • Indulge my every whim–even when I’m repeating an already disastrous scenario that didn’t exactly work out the first time.
  • Refuse to forgive–especially myself.
  • Hold on to, nurse, and even embellish grudges, past hurts, and assumed wrongs.
  • Accuse others of stealing from you, talking about you, disliking you (which they probably do by this point) because that further endears you to folks.
  • Watch lots of television.
  • Buy a scooter. Walking is for sissies.
  • Try and force things to happen. It’s exhausting and not trusting, but it’s based on believing that I’m actually in control–of anything and everything.
  • Keep that inner monologue of self-doubt and self-loathing going 24/7.
  • –while simultaneously blaming anybody and everybody else for my crappy life.
  • Get too little sleep, indulge in too many processed foods/sweets, and take a pill, any pill, all the pills I can find–for everything from a hangnail to hemorrhoids.
  • Never do anything that’s not for my own direct benefit.
  • Give up, give in, and then complain about how nothing ever works out for me.
  • Never say thank you.
How to Die a Horrible Death: 
  • Repeat the above steps for the next 40/50 years.
  • Get more demanding and grumpy with each passing year.
  • Threaten that “I’m going to die soon, so please just do this one thing for me,” to get people to cater to your every whim.
  • Go to a doctor for every little thing and take all the meds and all the free med handouts they give me.
  • Read lots of articles about horrible diseases and become convinced I have them all.
  • Push people out of the way with my cart and mumble “Move it, I’m old!” (my mother used to do this)
  • Become incontinent as soon as possible…
  • because we all know that our family members just LOVE changing adult diapers.
  • Insist others feed you and then let the food dribble out on your chin and down your shirt–your family will be sure to love that one, too.
  • Become so cantankerous that even the grim reaper doesn’t want to spend time with you.
  • Refuse to “go to the light.”
  • Fake your death scene–clutch your chest and gasp for air–just to get people all crying and worked up. Then yell, “Surprise!” (Facetious, I know, but don’t you want to try it now?)
Yeah, I’m having a bit of fun, but this list just might help keep me motivated.
I’m working on my Oscar-worthy death scene now….
Have some to add? Send ’em my way and I’ll add them to the post.
In the meantime, happy living!
Carol D. O’Dell

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I’ve been wanting to do this for a while–write to the future me–about how to live and die. I witnessed my 92-year-old mother as she died and I am profoundly grateful for that experience. I learned so much from those last years together–and that when it’s my time to go, I want to go out easy with a grateful heart. I even want to be a little  jazzed about whatever comes next. If that’s to happen, it must start now. You can’t get bold in those last moments if it’s not a part of who you are all along.

There’s a great site for just such a letter. It’s www.FutureMe.org.

It’s a place to write yourself letters–letters of encouragement, advice, or just to capture where you are today so that the future you and remember, really remember. I go there often–leave myself little notes–remember to laugh out loud at least once a day–to take a risk–to ask forgiveness. You can email it to yourself at any future date.

So here’s mine–about how I want to face those last hours on this earth. I’m hoping that I will have to email myself this same letter again and again–that I’ll have a bit of time to taste the sweetness this world has to offer.

But who knows? So I better get busy…

Dear FutureMe,

I have no idea when your day will come, but when it does–be brave. Meet the next big adventure with a smile and a “let’s see what’s next” kind of attitude.

In the meantime, tell people you love them, be grateful. Laugh. Give. For-give. Embrace whatever comes down your path–where ever you live, whoever you’re with, whatever it is that you do–give it your whole heart.

All I know is life is full of change. Switchbacks, surprises, knock your breath out and catch your breath moments–gather them all.

You’re going to lose people you love, and nothing can stop the hurt that’s to come. Try to let all the bitter disappointments, rejections, losses, and sorrows to pass through you. We have to let go and as hard or impossible as it might seem, that’s what life asks of us. Glean their truths without holding onto bitterness or cynicism.

Learn. Grow. Never settle. Forget this “I’m old” crap. Not everyone sits in a recliner and gives up, so hang out with those who inspire you. Be bold! Do the unexpected. Learn to fly a plane at 80, volunteer at a free clinic in Ethiopia, paint some kick-ass graffiti or climb the Eiffel tower–whatever grabs your heart and won’t let go.

Trust that what you want–wants you.

Leave this world a better place than you found it.

And when the time comes–be at peace–whether you’re  garden dirt (which is a lovely thought, to help flowers and trees grow) or star-dust in a distant galaxy, or fishing by a lazy river with Daddy–trust that whatever is next, is exactly as it should be–and that for me is the definition of Heaven.

When the time comes for you to go, this is what I want you to do:

Take a deep breath. Remember being on a boat. You’re coming back from a day trip–Mexico or the South of France–and you’re on top. You’re a little pink with sunburn, a little buzzed on rum punch, and the wind on your skin feels oh so good. Phillip is beside you and he’s holding your hand. He feels strong and warm and you lean on him. The sun is setting but it’s so bright that you close your eyes. All you can feel is the hum of the boat, the rhythmic bounce of waves, the occasional salt spray that cools your face.

This day, this life, was everything you ever wanted. You are full. You are exhausted and spent–in the best of ways. You think of all those you love–and you know without even opening your eyes that they’re surrounding you–those who are still on this earth and those beyond. You feel their love. They’re here to celebrate you.

And all you can feel is deep, sweet rest and the boat and the wind–taking you home.

Love big. Laugh bigger.

Life is oh so sweet.

~Carol

On a boat, off the coast of Cassis, France

Carol D. O’Dell

www.caroldodell.com 

 

Author of Mothering Mother, available on Kindle and in hardback on Amazon

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It’s not that most caregiving families want to, but there may come a time when your spouse’s or elder-parent’s care becomes more than you can physically or emotionally manage at home. Caregivers need to look past the initial bells and whistles of a care facility to make sure that your loved one is receiving the very best care at all hours of the day and night.

How to Choose a Care  Facility For a Loved One:

  • Plan early—don’t wait until it’s an emergency. The highest rated
    care homes usually have a waiting list.
  • Don’t pay for more than you need. Know that cost rises with care needs, so don’t pay for services your loved one doesn’t need–yet. Ask if they have a graduated care situation or whether your loved one will have to find another home if their care needs increase.
  • Consider smaller care facilities or even a group home. Bigger isn’t always better.
  • Don’t get razzle-dazzled by fancy entrances/amenities. Look past all that and notice how the staff interacts with their residents–are they caring, engaged, friendly, and prompt?
  • Visit several times/and several shifts before making your
    decision–and eat the food for yourself–and if you can, talk to a resident or family member of someone who’s already living there
  • Consider visiting with a friend or someone who is impartial and can notice things you don’t want to–or can’t see.
  • Ask other caregivers if they know about this facility and
    “what’s the word on the street?” Check out a care home rating site such as the ones listed at: http://www.consumerhealthratings.com/index.php?action=showSubCats&cat_id=268
  • Check online for more facility information and reviews–Caring.com lists care homes, facilities and hospices in your area–along with helpful checklists and other info to assist you http://www.caring.com/local
  • Does the facility offer family support services, such as caregiver support
    groups and family event days?
  • Discuss how client and family concerns are handled, what is the
    protocol for disputes? Also find out the procedure for how to move your loved one to another facility if that becomes a necessity.
  • Ask about turnover rate of employees and residents. If people are happy–they stay.
  •  Ask how they screen their employees and how often this is
    updated (know that some care facilities allow employees to have misdemeanors, etc. on their record)
  • Ask to view the ACA survey. It will list the facility’s records on everything from safety records, employee issues, MRSA and other infections, bed sores, accident/fall rates.
  • How is orientation handled and what efforts are made to
    integrate your loved one with the staff and other clients?
  • Find out if your spouse/parent’s doctors/hospital serve this
    care facility or if you will have to find all new doctors. (Many physicians or their assistants visit care homes, which can make it easier than your family member having to make a trip into the doctor’s office.
  • Consider location and how often you–and others–can visit.
  • Consider other location factors–should your loved one stay in their own community where they have friends, doctors, and religious support?
  • Never forget that you are your loved one’s care advocate. Stay involved, hang out, and continue to be aware of their physical, financial, and emotional needs.
  • Visit often and make sure it’s not a “to do” session. Caregiving can strip you of your most important role–to be the spouse, partner, daughter or son. Once your loved one settles in, then it’s time to make an effort to be their emotional support–brighten their day by wearing a smile, bringing small presents, taking them outside (if possible) or bringing them home for a few days around the holidays.

~Carol O’Dell

Author of Mothering Mother, available on Kindle

Other great care facility information can be found at:

http://www.caring.com/articles/caring-checklist-evaluating-an-assisted-living-facility

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Forget Kubler-Ross’s five stages of grief. They’re merely a jumping off point. Grief isn’t linear. Grief is multi-layered and doubles back on itself. Grief is raw. For many, it’s the closest a person comes to unhinging–to a break with reality. Getting through grief isn’t easy and isn’t predictable. Getting through grief is different for each one of us, but the more we share, the more we reach out, the more we help each other.

Suicide. Murder. Car accidents. Cancer. A sudden heart attack…or the long and winding road of Alzheimer’s. Grief doesn’t start at the point our loved one breathes his or her last breath. Grief is about loss, and loss can start months or even years before death takes the ones we love.

Grief is biological. Animals grieve. Watch this YouTube video where an elephant herd has found the bones of their matriarch. They form a circle around the bones, pick up her bones and hold them in their trunk, feeling each crevice with their trunk. This collective sorrow is healing–and even elephants know they need to grieve.

And yet some of us don’t show grief.

We don’t cry at funerals.

We don’t sentimentalize those who have gone before us.

We show no emotions–does that mean we’re heartless?

Showing and feeling grief are two different things. Some of us don’t share our emotions with many others, but that doesn’t mean we don’t feel them.

Emotions don’t go away simply because we squash them down and cover them up–they ooze out the sides of our life. We overreact to a traffic jam. We drink too much. Sleep too little.

Others get lost in grief. The sorrow, regret, and sometimes guilt swarm around us and threaten to steal all joy and purpose. Years go by–and we’re stuck. We can’t move on. We have no desire to. It’s as if time has stopped and we got off and the train sped away leaving us back then–back there.

So how do you get through grief–how do you feel it when you need to and then allow it to pass–before it destroys your life?

No simple answer to that one. I won’t pretend to know.

Sometimes we have to force ourselves to get back into life. Join a group and make ourselves show up.

For some of us anti-depressants seem to help. For others, a therapist. We need to talk it out.

For others, we have to allow ourselves to wallow for a while–until we get sick of our own juices.

No one way.

How to be there for someone else who is grieving?

No “you should be better by now,” or ‘I’m worried about you.” That doesn’t help.

Be willing to sit quietly beside them. Show up at the same time each day, or each week.

Listen. Offer distractions. If you have to, get in their face and fight for them. If they reject you, keep coming back.

One of the most tender betrayals of grief and how very long it can take and how different it is for everyone–and that we have no right to judge someone else’s loss–is the movie, “Reign Over Me.” It’s about a man who lost his wife and children in the 9/11 tragedies. It’s one of the more honest conversations about grief–one that I think might help.

What those who are experiencing grief need is to believe in hope again–some small sliver of hope.

And you might just be the hope they’re looking for.

~Carol O’Dell

Author of Mothering Mother, available on Kindle

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Being a full-time caregiver for several years and going the “last mile”has taught me a thing or two. I allowed (not just physically, but emotionally and spiritually) my mom to pass in our home and that has changed me. At the time, when I was in the thick of caregiving 24/7 and having to get up and play “prison guard” to my mom who had Parkinson’s (thank God because it slowed her down) and Alzheimer’s (which revved her up) and heart disease (just to throw another kink in the game plan), I spent most nights hitting my bed only occasionally as if it were a trampoline. In those grueling, full of worry, can’t make it better no matter what I do, nights and days I wondered at times if I would survive. I did, and I’m profoundly grateful for this life-changing, push me to the bitter edge experience. This gal learned a thing or two.

  • I learned not to be afraid of disease. Parkinson’s and Alzheimer’s I’ve seen what they can dish out, and it’s not pretty. They’re bad, don’t get me wrong, but I know the terrain and I find we’re most afraid of the unknown. I hope to figure out how to deal with whatever grenades life throws me.
  • I want to grab life with gusto. No guarantees in this world. So spend your money, take the trips, laugh with friends. Love big and hard and take risks–the good kind. Do it now. Arbor day, Chinese New Year’s–life’s for celebrating in big and little ways.
  • Stand up for myself–and for those I love. Caregiving comes with a zilliion big and little decisions. It’s easy to be bullied by the medical community, by other family members, by the “shoulds” in your head. I learned to stand up and stand behind my own decisions. It’s easier to blame others, and it takes a big girl (or a big guy) to have the guts to stick to my own convictions.
  • Love what is.Pain comes from the fight to make things a certain way, when we can’t let go of what was and walk across the bridge to what is. I thought my mom was back in my life in such a big way so we could “fix’ our relationship–work through our hurts and misplaced expectations. Wrong. I learned to love her, to love me, to love us–as is.
  • Laugh–or scream–but do something to release those runaway rollercoaster emotions. It’s time to stop holding it all in. Sorrow, guilt, frustration, resentment–it’s all there for a reason. They’re clues to help us know what’s going on in our heads and our hearts. But they’re toxic if they’re stuffed down and not allowed to breathe.
  • Do something I’m proud of. It’s time to leave the world a better place than I found it. I want to be known for something. For making a difference. I want some small sliver of the world changed for the better–because of me. I’ll let you know what sliver grabs my heartstrings next.
  • To stop caring what others think. Get a nose piercing, cut my hair down to the nubs, paint my front door purple and my mailbox lime green, dance under the stars, speak up and speak out when I see an injustice–that’s how I want to live now. That’s how I want to be remembered. Conformity sucks. In the words of Nelson Mandela (I believe he quoted it from Marianne Williamson), “Why are you trying to fit in–when you born to stand out?”
  • Nature heals. Nothing brought me more comfort than the sparkle of light on water, a bird’s wings whirring overhead, a breeze lifting my hair and reminding me to stop for a moment and take it all in. When sorrow slams into my chest I hope to remember to fall into the earth and ask it to take from me what I cannot bear alone.
  • To tell our stories. I wrote every day I cared for my mom. I wrote to stay alive. I wrote to figure out life. I wrote to remember our journey. Those journals became my book, Mothering Mother, but I wasn’t writing to get a book deal. I was writing to capture moments, to pick them up like a prism and look at each facet.
  • When death comes, I hope to dance my way to the next realm, not fight it. I hope I’ll have a bit of a heads up and let go of this world with a dash of grace. I hope I’ll take Chief  Sitting Bull’s words and shout to the universe, “It’s a good day to die!”

That’s what I’ve learned. Oh, I can still be shallow, petty, and mean-spirited at times. I still lose my way–but not for long. Caregiving has changed me. For the better.

~Carol O’Dell

Author of Mothering Mother, available on Kindle

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