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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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CNN reported this week on people with Alzheimer’s who develop violent tendencies. This is the silent story that many families don’t want to talk about.  Family members (aka caregivers) don’t want to expose their loved ones. These respected family members were once doctors, lawyers or indian chiefs, as the saying goes–Alzheimer’s is the great equalizer and doesn’t care who you are, and pays no attention to your socio-economic status

We don’t talk about it. We deny and cover up, and stop inviting friends and extended family over. Spouses lie, make up excuses about the bruises. We’re afraid. We don’t know what comes next–where will they go, what care will they receive, can we even afford this care–and what if they get so bad that even the care facilities don’t want to deal with them?

How long can–or should a family, a spouse, an adult child manage the care of a person with Alzheimer’s, and particularly one who is dangerous?

As I read the article (link below) I saw correlations to my mother.

I remember the day she dug her nails into my arms and screamed for a good five minutes her nose practically mine. She knocked me out of the way to go and catch her imaginary taxi. Her eyes were wild. I knew we were in deep trouble. I knew that as a mother to teenagers who lived in the same house that I could not subject them to this. We had hit our wall.

My mother had Parkinson’s for years. The Alzheimer’s bloomed after she moved in with my family and me. Or perhaps it was there and she hid it–and I played along. I had noticed “signs” of paranoia and anger early on, but I chalked this up to her rather expressive personality.

As the disease took hold, she lost the ability to reason. I couldn’t convince her that my children weren’t stealing the crocheted doll that covered the toilet paper roll on the back of her toilet. I couldn’t convince her those were only squirrels running on her roof, not thieves breaking in night after night. I couldn’t reason with her that no, she couldn’t just wander off and catch a taxi to “go home” in our Florida suburban neighborhood. It always baffled me that long after our names and other useful information left her mind that the word, “taxi” stayed. Mother grew up in Georgia, not New York. I think she maybe rode a taxi twice in her entire life.

I stopped talking about it. People would say, “Just put her in a home.”

Like it’s just that easy. Money concerns–memory disorder units and other types of Alzheimer’s facilities that take this kind of patient cost upwards of $5,000 a month and are not fully covered by Medicare or insurance. Not to mention the emotional hurdles of all the times she begged me to never put her in a home, the worry of who would care for her, see past this, and how in the world do I even find a place and people I can trust?

So I stopped inviting people into our home. I stopped taking her places where she tended to act out. It was random enough that i wasn’t dealing with on a daily basis, but the inability to sit still, to pace, to worry, to fixate on me or on something bizarre–all that was there pretty much of the time. She trashed her room with the veracity of whole fraternity who had chugged a couple of keggers. I felt as if I were living in a lockdown facility and I was the unarmed warden.

My concern was that I’d lose it–my cool, my temper, my ability to control the situation. I could forgive her. She had a disease, that’s all. I had to rise above it. I was the one responsible for my actions. I didn’t want to do something I’d regret. I didn’t want to mis-handle my mother or this situation–or cause harm to my children, my marriage, my life. That tightrope was beyond exhausting.

My mother’s violent stage didn’t last too long. She was spiraling fast. Soon, within a few months, she went from violent to forgetting how to swallow. At that point I chose not to use a feeding tube. I had gone from one impossible decision to even a worse one. The thing about having your loved one at home and not in a care home is that you are 100% responsible for these decisions–and you have to follow them through. You witness the consequences of your decisions. You stand there every day and question yourself a million times. You don’t get to get in your car and leave. You stay.

How bad can it get?

Well, I’m here to tell you that Alzheimer’s can give them super strength and amazing endurance.

What’s the percentage of people with Alzheimer’s who are violent? The stats say 5-10% (National Health Monitor).

It’s a lot like schizophrenia in that most people who suffer with this terrible mental illness are not violent, but those that are get a lot of press, and can indeed, hurt people. It may be small percentage, but it still raises alarms.

Some Behaviors That Accompany Alzheimer’s Are:

  • Pacing,
  • Repeated mumbling words or repeated sounds
  • Ticks, cursing, “ugly” (berated, accusatory, or sexual) talk
  • Delusions (visual or auditory hallucinations)
  •  Pounding on a table or hitting their head, hand or object repeatedly
  • Fixation on some thing or someone (paranoia, anxiety)
  • Biting, pinching, hitting, kicking
  • Crying, moodiness, and other outbursts
How to Handle a Person with Alzheimer’s Who Turns Violent:  (Based on the CNN article)

1. Back down.

Most of the time, the incident escalates when the patient does not want to do tasks such as undress, brush teeth or bathe. Don’t physically force the person to do anything, she warned. This could worsen the situation and possibly injure all parties involved.

2. When the patient is upset, apologize — even when it’s not your fault.

Using this strategy will buy you time and good will. Don’t argue with an Alzheimer’s patient, because you can’t win.

3. When the patient becomes agitated, change the topic. (Redirect)

Change the subject. Move to another location. Distract them by something fresh–the birds outside, pretend a friend has called (make the phone ring) play a song they like. “If you can stay calm, you can mirror that calmness back to them,” Kallmyer of the Alzheimer’s Association advised.

4. Keep in mind that the world is distorted for an Alzheimer’s patient.

Know your loved one. Do noises startle them? Are they more upset around a certain person or time of day? Do you know what calms them? Do you have them on a schedule that works well for both of you? Are they sensitive to sugar, caffeine, or even experiencing pain (toothaches, broken ribs, urinary tract infections, and other chronic pains oftentimes goes undiagnosed and can add to their agitation).

5. Call for help.

When in doubt, ask for help. Call the Alzheimer’s Association Helpline. 24/7 for confidential help.

1.800.272.3900         1.800.272.3900.

No one is going to blame you or take them from you–if you ask for help before something horrible happens. No one can judge what you’re going through, and no one can understand what you’re going through. Be confident and don’t be shamed by this. Get the help you need. Call 911. Don’t wait for a tragedy. Get the guns out of the house–now. Hide the knives. You can live with a butter knife until you figure this out. You’re more than just a caregiver. You’re family. As much as you want to give up–you can’t. But don’t go it alone. Don’t isolate yourself. Reach out–get help–share your story. We’ve all been shamed for far too long.

CNN article link:

http://www.cnn.com/2011/HEALTH/03/30/alzheimers.violence.caregiving/index.html?hpt=C1

Great resource: Elder Rage, by Jaquelline Marcell

Carol O’Dell’s book, Mothering Mother is now available for your e-reader! Kindle version availble here.

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Today, my mother would have been 100 years old. I’m celebrating. She left this earth eight years ago, but she hasn’t left me. I spent the last three years of her life being her full-time caregiver and now, I’m back to being her full-time daughter. I feel the length and depth of our relationship. I see it as a whole or I can zoom in at any facet–when I was four and she adopted me, when I was fourteen with a splash of zits across my forehead, when I was 30 and a mother of three. Mother was there–for every stage. She still is.

I decided to take a quick glance at the year mother was born to see what it was like back then.

I decided to compare 1911 to 2011. Here are a few stats.

  • First use of aircraft as offensive weapon occurs in Turkish-Italian War. Italy defeats Turks and annexes Libya
  • Chinese Republic proclaimed after revolution overthrows Manchu dynasty. Sun Yat-sen named president
  •  Mexican Revolution: Porfirio Diaz, president since 1877, replaced by Francisco Madero
  • Roald Amundsen becomes first man to reach South Pole
  • U.S. explorer Hiram Bingham discovers Incan city of Machu Picchu.
  • Marie Curie (France) receives the Nobel Prize for discovery of elements radium and polonium
  • Chevrolet was founded in France
  • Ronald Reagan and Lucille Ball were born in 1911
  • First class stamp: .02 cents
  • Child labor at its height in U.S.

I notice the beginning of the car-craze we  grapple with still, today, Only now we’re focused on oil and how to fuel our four-wheeled allies. How much it costs, who has it, who needs it. It’s a pawn. It influences governments, commerce, and is a huge player in war. I also noticed Libya in the news–way back then–and again, in 2011.

Other similarities: more amazing inventions and discoveries include:

  • A 9.0 earthquake rocks Japan followed by a nuclear reactor scare of radiation contamination hundreds of miles in diameter.
  • Egyptian citizens take to the streets demanding and later receiving governmental changes.
  • Lybia breaks out in civil unrest as do other Middle East countries.
  • Gas prices continue to soar after last year’s major oil catastrophe in the Gulf of the U.S and due to escalating problems in the Middle East and a growing demand for the product.
  • Unmanned aircraft by DARPA is capable of staying in the air for up to five years
  • Virgin birth of a shark–second occurence we’re aware of (not kidding, folks, here’s the link)
  • Travolution system (by Audi) that allows its cars to exchange information with traffic lights
  • Gene that leads to longer shelf-life in fruits and veggies (Why include this? Think globalization and how we keep tampering with our food)
  • Omniderm–a substitute for human skin has been invented (and patented) by Israeli researchers, also artificial  corneas created by  U.S. doctors that could potentially restore sight to the blind
  • CERN successfully completes tests on the world’s first particle collider ( a potential form of energy)
  • Child labor is outlawed in major countries, but human trafficking (including children) remains a serious concern
  • Stamps now cost 44 cents

It’s obvious. The world has changed. The world is changing. And yet, I notice how certain concerns circle back around.

In some ways, I’m sad that mother’s not here to blow out her own 100 candles. But realistically, no. I’m relieved she’s passed on and is a part of this great universe.

Why? At 92 my mother has Parkinson’s, Alzheimer’s and heart disease. The last eight years wouldn’t have been pretty. Or satisfying. As a caregiver, I would have been way beyond burnout. Financially, her money would have been way gone, and money equals care in our country. I have no idea how I would have met her physical needs, much less her emotional needs. I don’t think, knowing where she was headed, that she would have been much more than incoherent and bedridden. Sad to say. Heartbreaking, actually.

Now, I do know of centenarians who spent their big century b’day by skydiving. That’s simply amazing.

But I’ve made peace with the realities of caregiving. That wouldn’t have been my mother’s outcome. She left this world with only the last year or two being rather rough. Not bad, to live 92 years and only the last two being less than desirable. Still, we enjoyed some good times those last few moments of her life. We played the piano, held hands, I let her eat anything she wanted–mostly Klondike bars. We looked at old photographs. I brushed her hair. She left this world on a gentle June evening with a breeze lifting a lace curtain overhead and me, by her side.

Happy Birthday, Mama.

What have you been up to these past eight years? Riding a comet? Are you sitting on a lawn chair enjoying some distant shore? Walking hand-in-hand with the love of your life?

What’s it like–over there? Is there an –over there?

Wherever you are, know that you are here as well–with me.

You used to relish telling me what to do. And now, I listen.

All my love, your daughter–

Carol

~Carol D. O’Dell

Author of Mothering Mother, available on Kindle

 

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My friend Amy opens her front door and a hospice care person steps inside. They walk back to Amy’s dad’s room–a small Christmas tree sits on table positioned for him to see.  It’s the only holiday decoration in the house. Caregiving and the holidays can be a tender time–and a time of dread.

You might be asking, “Is this our last Christmas together?”

If your loved one is in hospice, it might be. But this is Amy’s second Christmas–with hospice in tow. Still, she feels that her dad won’t make a third.

“There’s a finality to this holiday we haven’t had before. Even dad knows it.”

I asked her what means the most to her this season–what’s the one thing she has to do.

“Our family tradition is that on christmas Eve we gather around the tree, drink egg nog and open our gifts.  Dad always reads from the Book of Luke and we sing Silent Night.”

Amy teared. She’s worried her dad won’t make it that long.

I suggested she move up Christmas Eve–that her dad probably wouldn’t question the date. Her face lit up and a smile spread across her entire face, softening worry lines.

What do you do if this is your last Christmas together?

Whatever brings you relief, whatever comforts you–do it now.

Surround you and your loved one with support and ease.

Ask for help, say exactly what you need–or ask for space–whichever you need.

Let go of expectations.

Let go of everything and everybody who causes you stress.

Pull in. Get Quiet.

Find your place of peace.

Make your own Christmas. Don’t wait.

~Carol D. O’Dell

Author of Mothering Mother, available on Kindle

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