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Archive for the ‘transformation’ Category

Last night, the television show Boston Legal had one profound moment relating to Alzheimer’s.  

The premise is that one of their leading characters, Denny Crane (played by William Shatner) has early Alzheimer’s. He’s a brilliant attorney who has never lost a case–and he’s part owner in firm. The other law partners are hesitant for Denny to continue to litigate. Not only is he forgetful, he sometimes does or says bizarre things. Things Alzheimer’s patients might say or do.

Great scenario because I happen to know a great law professor from Yale who lives in my community who now has Alzheimer’s. You can be homeless and live under a bridge–and have Alzheimer’s, AIDS, or cancer–or you can be the president of the United States.

At one point, Alan, Denny’s best friend is having a conversation with Jerry, another lawyer in the firm, (who suffers from Asperger’s syndrome) about what a phenomenal job Denny did in court. Jerry blurts out, “Too bad Denny’s dying from Alzheimer’s.”

Alan is shocked. Insulted. He retorts:

“Denny’s not dying from Alzheimer’s. He’s living with it.”

There’s a great distinction here.

One of the drawbacks to early diagnosis is giving up too soon.

Early detection should mean that you receive proper medication, spend time with your loved ones, and make plans to live–not die.

In the case of Alzheimer’s, the average patient lives 8-10 years, and even longer depending on the age you contract this disease. Parkinson’s, ALS, MS, and other diseases can even offer a longer lifespan. Coincidentally, the average caregiver spend 4.3 years caregiving–leaving a bit of a discrepancy here.

The message is: don’t give up too soon.

Don’t hear a diagnosis and go home, draw the curtains, curl up in a fetal position and wither away.

As a family member or caregiver, it’s a blow to hear that your loved one has a terminal illness, but you still have to get up and face each day.

Michael J. Fox says that Parkinson’s is “the disease that keeps on taking.” He’s chosen to live with his disease. He’s chosen to do this for the millions who look to him and rely on him to raise money for research, for the difference he’s already made, but I’m sure he does this even more for his wife and his children.

A recent example is Ted Kennedy’s diagnosis of a malignant brain tumor. He had a seizure and went into the hospital just last weekend. Yet today, he and his wife, Vicki went sailing. He loves sailing and the Boston Globe said he “finds renewal on the water.”

Ted Kennedy is actually teaching his family and others how to treat him. The Chicago Tribune wrote, “Kennedy’s cancer is dire, not hopeless.”

It’s proven that prayers and good thoughts can impact people’s lives clear across the country–and we can create the atmosphere and attitude around us by how we handle our own bad news.

Maya Angelou says, “We teach people how to treat us.”

Yes, it’s natural to feel kicked in the gut.

It’s natural to take to the bed, cry, get angry, lash out or pull in. Don’t beat yourself up for going through this very natural stage.

But after that, it’s time to move on.

You (or your loved one) most likely won’t die tomorrow. Or the next day.

So you take your meds, maybe get physical or occupational therapy. Change things around in your home, hire a home health aide, buy a walker or scooter or whatever else you need. Life is different. I don’t doubt that. But life can still be good.

You can still find joy–and purpose.

Sometimes our purpose is nestled in our situation. Sometimes something–or someone arises in our midst and a window opens where a door shut.

Yet, there will come a time–hopefully in the distant future when the tide turns again.

You, or your loved one may die from this disease, I can’t promise you won’t. 

If not, from something else.

We have to eventually accept that as well. Another transition. Another acceptance. Another change.

But until then, live, live, live, live, live.

~Carol D. O’Dell

Check out her book, a day-to-day, intimate and honest look at caregiving…

Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

available on Amazon

www.mothering-mother.com

Family Advisor at www.Caring.com

Syndicated blog at www.OpentoHope.com

www.kunati.com/mothering

 

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Rattles

Mother has what they call the death rattle.

Every time she takes a breath there’s a rattle. Technically it’s congestive heart failure—the fluid around her heart is building up and her body can’t process it, so it’s filling up in her lungs.

I remember when Mother said she had a little kitten in her chest when she’d get bronchitis. She always was funny.

I keep going back to this book, How We Die, by Dr. Sherwin Nuland. It’s been my Bible lately. He’s guided me these past few months with his insight and depth into not only the process of death but its ramifications for the living as well. There’s so little out there on how to do this. I need to know the physical side in order to grapple with the emotional and physical aspects of how to be with a loved one as she leaves this earth.

When I go to hold Mother’s hand or lift it, it’s lifeless. It may be warm, but it’s deflated the way Daddy’s was after he died. Dehydration has caused her skin to pucker and gather over blue and swollen veins. I wipe each hand with a warm cloth. I wipe her neck and chest, her cheeks and eyes, ears and hair.

It must feel good to her. It feels good to me.

No one’s here and that’s the way I like it, to be able to wander in and out as I need to, to pray, cry, talk, sing, and leave the room when I can’t take it any more. I turn on the TV and hope for something funny, anything funny. I ramble down to the river and write, but I’m too anxious to sit and go back in. I’m going to take a bath. I haven’t made any calls today. 

Everyone’s just going to have to wait. I’ve done quite a bit.

I just want to be quiet and let it happen, not make it happen.

(Excerpt from Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir) 

This is what it’s like at the end. You don’t fight when the death rattles come. It sounds like an old-fashioned, out-of-date term, but it fits.

When I first heard of the death rattles, it was probably from some scary movie and it conjured up all kinds of terrible things. It wasn’t easy, sitting there, not “doing” anything. It was a time of being. Not doing.

In some ways, it’s a good sign. It’s a sign to let go. It’s a sign to stop fighting. To sit quiet, to kiss, ask forgiveness, and say good-bye. 

It’s nothing to be afraid of. When it comes, it comes. When it’s here, you’ll know what to do.

 I cleaned out mother’s room–made it less cluttered. Called her relatives and told them it would be soon. I began to make plans for her memorial. Gather pictures to make into a collage and presentation. I was over fighting death. It was time to allow the transition.

The death rattle also refers to a gurgling sound that comes with the last breaths, or even the sounds after death that the body produces–it’s the fluids that have built up in the lungs, throat and body cavities. It’s nothing to be afraid of, it’s just biology. We as a modern society know so little about death and dying and grieving that we’ve made things scarier than they need to be. We have so little experience being human–and sharing in this most sacred event.

Nothing and no one can prepare you for this day. You think you’ll panic or run, but you won’t. You’ll be too tired and too numb to get too worked up. You’ll also know it’s time and you’ll want to be there. If you have to run, that’s okay. No one should judge you. This isn’t a bravery contest.

The machines are usually turned off at this point, food and meds have stopped and those who need to say good-bye have come and gone–or stayed. All the fuss is over.

 It’s not about giving up as much as it’s a time of giving in.

 You’ll be grateful that your loved one’s suffering is almost over.

You’ll be grateful that as heart wrenching as it is, that you’re there–witnessing this most holy event. 

~Carol D. O’Dell

Author of Mothering Mother, available in hardback or on Kindle

www.caroldodell.com

Family Advisor at www.Caring.com

 

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One of the biggest issues I had as a caregiver was no energy!

I knew I was doing a lot, caring for my mom (She had Parkinson’s and Alzheimer’s and lived with us)  and raising three daughters, but I still felt like most of my work was at home, not terribly hard or fast-paced, so why did I  always feel as if I was swimming in peanut butter?

I had such big plans. I thought since I was basically under house arrest, I’d spring clean, write more, paint a room, take a French course on the Internet. Caregiving wasn’t going to defeat me!

Nada.

I couldn’t make myself do anything. My body and my mind had gone to mush. Each day was a monotony of pills, food trays, doctor appointments, laundry and dinner…the nights were roller-coaster as mother’s sundowning made her more alert and agitated as the night wore on.

I was caring for a lot of people, yes, but when I began to observe what was draining my energy, it was less physically related than I initially suspected.

5 Caregiving Energy Zappers

  1. Lack of sleep.
  2. Worry and Regret
  3. Control Issues/Boundary Issues
  4. Holding on too long/not letting go

Lack of sleep is obvious, and the most physical of the 5 zappers. It’s also perhaps the most detrimental effect of caregiving. You have to realize that interrupted sleep is even harder on your body. You walk in a zombie state. You eat more to compensate, you can’t concentrate. We know that lack of sleep effects job perfornance, driving (even more than alcohol some argue), and your overall health and how it can contribute to obesity.The lack of sleep, compounded with the enormous challenges and responsibilities of caregiving creates a recipe for disaster.

What to do?

Tough one. Not all caregivers have the option or want to place their loved one in a facility.

Couple of options: Do you have a friend or neighbor or relative who lives nearby that you could go and sleep in a guest bedroom once or twice a month? You need to be OUT of your house, so your body doesn’t have all those cues to wake up. Even if your spouse of someone is willing to take care of your mom/dad/loved one, it’ll still wake you. Go somewhere else. Even a night at the Motel 8 is a good use of your money. Trust me on this one.

Second option: call you local council on aging and find out about respite services in your area. Or call a large church and ask for an adult sitter–or take your loved one to an adult day care. Insist they go. If they’re pouty, oh well. You have to take care of your health. You have to nap. You have to sleep! Without sleep, your body doesn’t repair itself. You could have a car accident, give your loved one the wrong dosage. You have to address this. Sleep deprivation is a serious problem that leads to many other problems.

Worry and regret: These are two hound dogs that won’t give up. They bullies and they’ll taunt you, pick at you, needle at you until you do what you have to do to all bullies, bears, lions and tigers.

How to face your inner bullies:

Stop running. Turn around. Take a deep breath.

PUFF UP. That’s what they tell you if you’re in the woods and are attacked by a bear.

Yell, bang pots, scream NO! Throw your arms around appear big and large and menacing and prove to that bully (and yourself) that you’re not running any more.

Worry is looking forward, living in fear of a future that isn’t even here yet. What if…?

Regret is looking back, beating yourself up for what’s already done. Why did I?

Both are not living in the present.

I just finished Eckhart Tolle’s book, The New EarthOprah’s bookclub pick. Get it on CD (his voice is about as flat as Stephen Hawking’s voice synthesizer, but the book’s so heady, it’s easier to listen to than read) His insights into living in this present moment, and why that brings peace, purpose and joy was refreshing really rang deep within my bones.

Worry and regret are just borrowing trouble, and trouble multiplies. They will eat at your mind, your heart and your life and will never stop. There’s always something to worry about, always something to regret.

What to do? Again, stop,  turn around, face this bully and say “NO.”

I suggest wearing one of those wrist bands (one of those rubber band/bracelet things). and every time you start to worry or regret, snap it real hard. Say out loud, STOP. Choose a good thought to replace it with. Have 2-3 fall back thoughts to replace the negative ones with–or put on music but stop the cycle.

Control Issues/ Boundary issues: You’re either one way or the other. You have to control everything–or you dont’ know how to say no.

It comes with the territory, and let’s face it, caregivers are bossy. Either by nature or by default, we’re used to running things. We know how mom likes her eggs, how to get her to take her pills, how we like the bed made, and on and on…. We don’t ask for help because we want things done our way.

Caregivers are all people pleasers. We like being needed, but the problem is, it mounts and mounts, and we simply can’t do it all. Stage left, in comes worry and regret. We need help, We need to give up our perfectionism and realize that we don’t always have to be busy–control thrives off of busyness, and after a while, caregivers forget how to do anything other than care give! We sit in front of the tv with our families and feel we should fold laundry, make next week’s list. We don’t know how to just relax any more because we’re in uber-mode.

How to stop? Breathe. One deep breath at at time. Ask for help, and then tell yourself that no one has to do it your way. Find small 5 minute relaxers–a bath, a walk, and try not to think ahead, plan, or organize your thoughts. Just be. Each time you feel your nerves building. Stop, Breathe. Fill every ounce of your lungs. Do it three times. The world can wait. Breathing is a great stress reducer.

Grieving: Those of us who have a loved one with a “life limiting illness or disease” as hospice says, knows that our time with our loved one is running out. Alzheimer’s, ALS, Lewy Body can take our loved one from us long before they leave this earth. We still have all the physical care, but without the reward of the relationship with our loved one. They might not know who we are, might not be appreciative or even be capable of talking.

We’re already grieving. Our hearts ache, and yet we have to keep on. Grieving is hard, necessary work, but it’s still work and it takes an enormous amount of energy to grieve.

If this is where you are in your life, first, recognize it.

Second, be easy on yourself. 

No wonder you don’t have energy. Just get through. Grieve as only you can. Does that mean sleeping, flipping channels? crying? Do whatever you can to get through.

Look for ways to soothe your soul–journal, pray or meditate, go out in nature and just sit. Talk if that helps, or be silent. This is a part of the process and we have to honor grief. When we do, when we don’t fight it but let it naturally occur, then it’s healing and cathartic–and it doesn’t last forever. As hard as it is, trust that joy and energy will return.

Letting go: Holding up a cardboard box isn’t difficult, right? It’s not heavy, but stand there long enough and that cardboard box starts feeling like a boulder. Not letting go is the same way. You can’t get your mother back from Alzheimer’s. I’m sorry. I really am. But you can’t. You have to let go that she doesn’t know you. You can’t get an ex husband back who’s already married again. You can only move on with your life. You can’t regret you didn’t finish college. You can go now, but regretting the past is useless.

Holding on is subtle and can go undetected. We think we have. We don’t pay attention to the snippets of thoughts in our heads, that running dialogue. We don’t realize we’re holding hurts and grudges, that we want things to be the way they were even though we know that life has changed. We’ve changed.

When my nephew, Charles was about three years old, his mother came to the back door and offered him and his older sister a cupcake. Charles had a matchbox car in one hand, and a palmetto bug (big roach!) in the other. He looked at the cupcake, looked at his car, looked at the big, and couldn’t decide.

Then he popped the roach in his mouth and grabbed the cupcake!

Lesson here: Let go of the “cock roaches” in your life, and take the cupcake!

I ask you, what are you holding onto? What do you need to grieve? What are you going to have to let go of and then hold out your empty hands and trust that something or someone new will come into your life. I can’t promise that you’re not going to have to sit with that void for awhile, and that’s what we’re all afraid of–but I can promise you this:

Until you let go, you’re hindering all the good out there that’s waiting to come into your life.

Energy zappers keep us from our joy and purpose. They make us exhausted, grumpy and lost in a fog.

By identifying our nemesis, our energy zapper–we can stop, turn, look at it for what it is, and make better choices.

~Carol D. O’Dell

Author of Mothering Mother: A Daughter’s Humorus and Heartbreaking Memoir

available on Amazon

www.mothering-mother.com

www.kunati.com

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Are you stuck at home?

Stuck hours at a time in a hospital / care facility with a loved one?

Do you own a snap front house dress and wear it with socks and house shoes? (Guys…come on, fess  up.!)

Then you might need a caregiver re-invention!

It’s kind of like an intervention–you know, when your loved ones all get in your face and tell you your life has gone to pot and you need professional help….

If you’re not careful, you’ll lose yourself in the vortex of caregiving.

I know, been there–my mom had Parkinson’s and Alzheimer’s and lived with me (and my family) the last almost three years of her life. 

I had many, many days when I was too tired, lethargic, zombie like to do much of anything past cut pills, serve meals on trays and wash bed sheets.

But caregiving didn’t come in your life to drag you down. It also can provide incredible, unique opportunities.

If you’ve had to quit your job/work less hours/move or have your loved one move in with you, chances are you’re not going to be able to go back to your old life. Life has changed. You’ve changed.

The average caregivers spend 4.5 years caring full-time for a loved one–and 70% of all caregivers do it at home–and go it alone. Sad. Caregiving need not be that isolating.

You have to think creatively. Use adult day care while you can. Hire a sitter–a neighbor–someone you trust–while you can. There may come a day when you can’t. Even if you do have to put your loved one in a facility, you still have to check on them all hours of the day and night to make sure they’re receiving good care.

But…in the few snatch and grab minutes you have during the course of 24 hours a day–why not try something new?

  • start that memoir or write a poem–even a sappy one
  • buy a hummingbird feeder and take pictures of them–you don’t even have to go outside
  • buy some yarn, some knitting needles and a book
  • cook something you saw on the Food Channel
  • try an online college class
  • take up chess or soduku
  • try a home repair yourself–get a book from the library
  • buy a yoga DVD and do 5 minutes a day–build from there

Now, none of this is going to change the world, but it can brighten yours.

Before you go all snarky on me, grumble, complain you don’t have time–or energy for such malarky…give it a try.

No one’s watching.

Caregivers need a break and  no one’s going to give you a break until YOU give you a break.

I know it’s difficult to think about, but one day, your loved one will not be on this earth.

And you need to go on. You need to come out of caregiving a different person–with new skills and interests.

Caregiving happened for a reason, for many reasons–some of them good.

Reinvent yourself. You just might like the new you.

~Carol D. O”Dell

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

by Kunati Publishing

available on Amazon and in most bookstores

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