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Archive for the ‘will to live’ Category

I opened my front door Thanksgiving morning and called “Here kitty, kitty, kitty.”

My 14-year-old cat, FatBoy had been missing 18 hours. I was up late in the night looking for him. He never went far, hanging around our shady front porch, but most eating (thus his name) and sleeping in various windows, beds, and closet corners throughout the house. No answer. No meow. I was in full worry mode. I’m no stranger to death. I know that losing  a pet isn’t like losing a parent or spouse, or child but nothing in me wanted to go through this again. Not today. Not Thanksgiving.

My husband and I took our bikes and began to ride around the neighborhood calling him.

And then I saw him.

My husband threw down his bike and got to FatBoy before I did. His hands went to his heart. He ran half way to me, turned and back to FatBoy, then back to me–not knowing what to do.

And then he held his arms open and I folded into his chest and cried.

We’ve been through so much together. He held me when my adoptive Daddy died, the big teddy-bear hero who gave me a home and made the world right again. I held him when his brother-in-law died in a head-on car crash. Bill swerved the car and spared the life of his wife and daughter. My husband identified the body. I held him at four in the morning when he returned from the morgue and collapsed in my arms. He held me when my mother died after years of Parkinson’s and Alzheimer’s, when exhaustion gave way to release gave way to void. He sat beside me on a sailboat as we helped to scatter a dear friend’s ashes into the sea, feeling our own mortality. We’ve stood side-by-side as we witnessed the death of friends, family, and yes, our beloved pets and remembered their lives in that bitter-sweet time of letting go. I can barely grasp what it would be like to lose him. I can’t even let myself glimpse into that sorrow.

Who would hold me?  Who would I hold?

I’ve learned a thing or two about death. I’ve learned to not stop the pain, the tears. I’ve learned to accept the love, the support.

I stayed with FatBoy while Phillip went back and got a blanket. He was in a garden behind a small white picket fence. I call this particular neighbor’s house the Thomas Kincaid house. His paintings are warm cottages with trees and shade, and dappled sunlight. It was quiet, a little cool. I could sit with him. Be with him. I wasn’t afraid or nervous. It was just him and me.

My husband dug a hole in the backyard and we decided to bury FatBoy under my Buddha statue. I bought the laughing buddha for my birthday last May–did I somehow know? I laid my sweet, chubby, always there for me kitty into the earth and sprinkled the first handful of cool, moist dirt on top. I wanted to do this.I was fully alert and present. It wasn’t like Daddy’s funeral. I was 23, so young, so scared. I turned away when they lowered him into the ground. Today, I don’t need to turn away.

It felt right–for him to die in a garden and be buried in a garden. In the spring he’ll be surrounded by cannas and irises and calla lillies. There’s a windchime in a Live Oak nearby.

Our youngest daughter joined us. She hugged me–full body. We held  on to each other, neither of us in a hurry to let go. Our middle daughter arrived for the day’s festivities. She’s the director of a massage therapy school and could charge for her hugs, they’re so good.  I felt my muscles give way, and then her husband–a former wrestler with a wide chest and strong biceps curl around the two of us. My friend, Laura arrived and ran to me. She has four cats, and we cried and cried.

I’m tired of holding it all in. Tired of trying to be strong. Tired of keeping it all together. Each person, their arms, shoulders, necks and kisses comforted me. I allowed each of them to minister to me, feed me, be my strength.

We all pulled the meal together, sat down at the table and took hands. And I realized that it was good day for a death–I was surrounded by people I loved and who loved me.

The love that surrounds a death is healing. It’s comes in time. You’re ready when you’re ready, when life has brought you here. It will come.

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Let’s face it–there’s just too much to do during the holiday season–and if you’re caregiving or a sandwich gen-er–you’re really feeling it by now. 

Sure, it’s all good–the tree, the gifts, the home baked cookies, the parties, the family gatherings, the lights…

Every one of those holiday components can be truly wonderful–the fresh smell of the tree, the wonder of what’s in that big, sparkly-wrapped box…

But then the proverbial “soup pot” boils over and the cookies burn, you don’t want to go to one more red-sweater party (or there are no parties and you feel empty), and the whipped cream on top of the hot chocolate–someone says/does something really ugly…I mean you feel like your head’s going to explode you’re so mad.

Not exactly what you had planned, huh?

It’s all too much.

If you want a good laugh, the Thanksgiving segment of Boston Legal will make you snicker (you can watch it online).

Around the holiday table is Denny Crane, (played by William Shatner) who has Alzheimer’s, so he”s always good for a few inappropriate remarks, Alan Shore, his best friend (played by James Spader--he could read to me alll night) decides to deliver a lawyerly rampage on American politics…and the other players all pitch in their own prejudices, stereotypes, and funny banter that will make you WISH your family was this witty in their all too familiar digs. 

It all winds up (after a really big fight) in the kitchen with Denny thoroughly confused. Christmas, time, memories, love–it’s all too much. The small moment winds up being a long hug between two old friends.

But of course, you can’t just leave it like that–on a sweet note–no!

Just like at your house, (or mine)–someone has to take it too far and someone really does get their feelings hurt.

It happens. We’re human, and no one, no one can push that exact right button to make you go off than someone who shares your same DNA.

My other Christmas funny movie is the classic “Christmas Vacation” with Chevy Chase. We still kid about his aunt wrapping up the cat and trying to give it as a gift–and then she sings the National Anthem instead of offering a blessing. My mother actually did that once–so we all went with it–hands on our hearts and belted out our national pride.

All you can do is spike the egg nog and go with it. Christmas and the holidays can bring out the beast in all of us. But if we look really close and think small, we might find something of value

My only advice is survive. Any way you can. Just envision that Last of the Mohican’s guy about to jump into the waterfall and telling the love of his life. “No matter what, I will find you. Survive!” This is what I tell myself when I’m really stressed. (FYI guys, All and I do mean ALL girls love that scene).

Choose one thing–whether it’s riding around looking at lights or baking Italian wedding cookies from your great aunt Sophia’s recipe–pick one thing that means Christmas to you–and do it. Don’t get hung up on what doesn’t get done, and what gets screwed up.

The perfect Christmas/Chanukah/holiday is  really more than the human race is capable of.

Zero in on what is most sacred, most precious to  you. That’s all that matters.

One small thing. 

For me, it’s going to hear the Edward Water’s choir sing. They’re amazing, and sitting in a tiny chapel with warm wood walls and stained glass windows while 20+ college students belt out the Carols with soul and spice is the perfect way for me to celebrate the season. I attended last year, and tears streamed down my face–I clapped and sang and felt more in touch with the season that I had in years.

Each of us have to find our own way, what touches our heart and lifts our spirits.

If you’re caregiving, think really small. Hot tea and a cookie while sitting in front of a fire might be just right.

~Carol O’Dell, author of Motheirng Mother

Family Advisor at Caring.com

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I’m Carol D. O’Dell, and I hope you’ll check out my book, Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir, available on Amazon

Caregiver Depression is Very Real and Very Dangerous.

Why?

It Doesn’t Always Look like Depression.

That means it can go undiagnosed for a very long time.

Caregivers can’t (or don’t) stop. They don’t lock themselves in darkened bedrooms for days on end. They don’t necessarily cry or stop eating. They keep on caring for their loved ones. They suffer in silence.

So, what does caregiver depression look like? It can be tricky. It doesn’t manifest itself in the same way other people display depression.

What caregiver has the time to fall apart?

Conservative stats put caregiver depression 20%. That’s very conservative. I’d say it’s closer to 50%. It comes with the job. We’re dealing with disease, pain, and the end-of-life. Depression doesn’t have to consume you, but I doubt there is one caregiver out there who isn’t touched by it.

Am I Depressed? Ask Yourself These Questions:

When is the last time you got your hair cut?

Have you gained more than ten or fifteen pounds this year?

Have you stopped calling friends? Do you think they’re sick of hearing you complain and what else do you have to talk about anyway?

Are you so antsy, so anxious that you can hardly stay still? You stay on your feet, clean, talk, eat–all to avoid something you can’t even name?

Do you feel like all your energy has been drained out your big toe? Seriously, do your legs feel like they’re in cement?

Do you do nothing other than care give?

Fill in the blank: I used to ___________, but I just don’t want to, have the energy, or care about things like that any more.

Have you stopped decorating for the holidays or celebrating birthdays or other special days? Why bother, it’s just more work for me–attitude?

Do you find yourself zoning out–all the time? Can you not think anything through?

Do you get on crying jags and just can’t stop?

Are you stuck in negative thoughts, berating yourself mentally–for hours on end?

Are you waking yourself up with copious amounts of caffeine–or pills–and then forcing yourself to sleep with even more pills?

Do you feel (and look) 15 years or more older than you really are?

Do you feel hopeless? Do you feel you have zero options in your life–you can’t stop caregiving even if you wanted to?

Do you not even want to think about life after caregiving–because you don’t even know what you’d do with yourself?

Is sex a ridiculous concept and even the thought of it takes way too much energy?

Do you flip channels endlessly but never rent a movie or read a book all the way through?

Would a work colleague or old friend even recognize you now?

Are you an insomniac–after years of caregiving, sundowning, and middle-of-the night emergencies, do you find your sleep patterns all out of whack?

Have you ever thought about taking yourself–and your loved one “out of this world?”

***

If you don’t answer “yes” to at least a few of these questions, I’d be surprised.

Caregiving is hard on the body, spirit, and relationships. These signs of stress and depression are common–for anyone, but especially for caregivers. But it’s the severity in which you experience these symptoms. Every day, all day long, the vortex of negative thoughts never ending…

Men are vulnerable in different ways.

They don’t always have the friends and support system that would allow them to let off steam.

They relied on their wives and family members to talk to, feel close to, and if their wife is the person who needs their care, is no longer their companion in the sense the person they communicate with the most–then these men are truly isolated. They may drink too much, flip channels, pull in to the point to where no one knows how bad it is.

Some men take it too far–if their loved one is dying (or they perceive they are), or in sever pain, they might come to the conclusion that it would be best if they both “leave this world” at the same time.

The statistics for elder murder-suicide are startling.

Florida has the highest incident, and one all too common situation is that of the husband whose wife has Alzheimer’s, and he can’t continue to care for her. There’s usually a gun involved.

This is a tragedy–for families and for society. We have to find a way to reach people, to let them know they’re not alone. There are options.

How do you know if the stress and depression has gone too far?

You probably know in your gut. You know how much you’re fooling others. You know how much weight you’ve gained or lost, how little sleep you’re getting, the last time you talked to anyone outside the house. You know how many times you’ve reached for that bottle.

Are drugs the only answer?

In today’s pharmaceutical world, the first thing a doctor is going to recommend is an anti-depressant.

But know that anti-depressants come with some risk.

These are helpful, and when needed, a god-send. But it won’t address the root of the problem.

You need friends, a community, a network. Caregiver supports groups can be a life-line.

You may need a professional to talk to–someone who will listen and ask questions, who will help you make a plan. This may be in conjunction with medications.

If anti-depressants are a good choice for you and your situation, then take them properly and give them time to work. Also, think of this as a part of your health plan, and keep in mind that you will eventually want to wean yourself off these power medications.

Lots of Ideas to Help Ease Depression: 

  • Get the junk food out of the house–sugar highs and lows can really whack you out
  • Get the guns out of the house! Why risk it? Sell the thing, donate it to the local police.
  • If you’re having a problem with alcohol, get rid of it. You can live without it if it’s proving to be a detriment.
  • Join a caregiver support group. Get into a healthy one–a place where people can share openly, but also a place that is positive
  • Get out of the house just for you! Plan one outing this month–go to the zoo, call an old friend, make a hair appointment. Start small.
  • Journal, meditate, stretch–give outlet to those thoughts
  • Walk. Nothing is more healing and takes less time and equipment for phenomenal results. Start with a 15, 20 minute walk. Do it religiously. Don’t wait until you feel like it. Do it like you’re taking a pill. Force yourself if you have to. Don’t worry about walking fast at first, or dressing right, just get out the front door and shuffle down the street. You can leave your loved one locked in the house for 15 minutes. If you can’t, ask a neighbor to come watch TV in your house for that long.
  • Wean off the sleeping aids. This may take awhile. Go slow, take less, but at least monitor that you’re not increasing the dosage.
  • Get angry! Depression is oftentimes anger imploded. Go outside and throw some old glasses against the side of your house. See if it feels good. Go out to your car, shut the doors, roll up the windows and scream your head off.
  • Go to the doctor and get a prescription if you really need it–then take it–get rechecked and make sure you’re taking something that’s working for you. It may take you a couple of months to hit upon the right dosage/medication.
  • If you’re having dangerous thoughts, tell someone. People will understand. You will find compassion.
  • Watch out for physical signs. We can so ignore our health needs that we have a real physical condition we’ve ignored. You might not be depressed–you might be sick! The good news is, you can get well–so check with your doctor and at least get that over-due physical.

Important to Consider:

It’s okay if you can’t be a full-time caregiver any more.

Quit. Place your loved one in a care facility. God will not hate you, and if your loved ones hate you, then tell them to come do some non-stop, full-time caregiving!

Sometimes we just hit a brick wall. Cry, and then let go. It’s okay.

As dark and scary as depression can be, it’s our heart’s and body’s way of asking us to deal with something.

Depression can be an ironic gift that leads you to help and healing.

~Carol O’Dell

Family Advisor at Caring.com

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It doesn’t matter your cultural or religious background–it doesn’t matter if you’re wealthy or just barely getting by, there are three concerns at the end of life most people share.

They’re heard by chaplains, hospice workers and volunteers, and by family members who gather around those they love and try to make the last weeks, days, and hours of a person’s life as comfortable and as meaningful as possible.

 

Here are the three biggest concerns at the end of life:

  • I don’t want to be a burden
  • I don’t want to be in pain
  • I don’t want to lose control over what’s done to me

I don’t want to be a burden.

As a speaker/facilitator in the field of caregiving, I hear this concern all the time–and it starts long before the end of life.

In fact, I heard it from my 25 year-old daughter. She said she’d rather go into a care facility when she’s older because she doesn’t want to be a burden. It’s a sad reflection on society to think that growing older or needing help to get around is equated with being a burden. (I didn’t teach her this, by the way :))

There’s a lot not being said here:

I don’t want to be dependent. I don’t want to be vulnerable.  I don’t like others telling me what to do. I don’t want to be in the way. I don’t want people to resent caring for me. I’ve dealt with the elderly and infirmed and I don’t want someone to have to do, to sacrifice what I did. I’m scared. I

But what if you’re not a burden?

What if caring for you is viewed as a privilege?

What if you plan enough ahead of time and arrange for the added/needed help so that family members do less physical work and can simply “be” with you–enjoy your company?

What if you do all that you can do now–health wise–to be strong and mobile and live longer in good health? (there are no guarantees on that one).

What if you have something valuable to offer–even in your last years and months?

What if even your dying is considered sacred and something to treasure?  (even if it is hard)

What if, by allowing us to witness your end of life, we learn how to handle our own?

Who else will teach us?

I don’t want to be in pain.

No one does. Certain diseases cause more pain than others.

I can’t promise you that you won’t be in pain.

I can’t promise you that the end will come quick or be sweet–or even meaningful in the sense that sometimes we romanticize certain events and imagine them in a glowing, fuzzy cinematic light with all of our loved ones gathered and all getting along and tears and smiles and kisses and we can be coherent and see them all and hold this wonderful moment for all eternity…and it isn’t always like that.

I can tell you that hospice in particular will do everything they can to keep you pain free.

Palliative care is better than ever–there are all over salves that numb you, take away the aches, meds to reduce fever and chills–but many of these medicines will gork you out. You may sleep a lot. You may not be fully aware of time or of your loved ones coming and going. You might be pain free, but there might be a trade off.

All I can say is that by knowing this now, you can come to some level of acceptance. That’s all I can offer you–or me. I can’t say how I’m going to go–whether it will be many years from now or any day.

I can’t say whether the end of my life will be peaceful or tragic. I just have to trust–and do all I can to attract peace.

But I do know that whatever I believe about the hereafter, eternity, heaven…it will be that I will not be in pain. I will be in peace. I will not carry the pains, hurts, and sorrows of this world onto the next. And that brings me comfort.

I don’t want to lose control over what’s done to me.

Isn’t it amazing that one of the last questions/concerns we have before we leave this earth is about trust?

This teaches me one thing–I better get to dealing with my trust issues now.

Trust is the underlying factor that determines the success of any relationship–marriage, friendships, communities–it all boils down to, “Can I trust you?”

The answer isn’t “Yes, I can,” or “No, I can’t.”

Trust isn’t about finding people who won’t ever let you down.

Trust is knowing they will–in some way or another–and being okay with that.

Loving them any way. Trusting any way.

Choosing and then living in trust. Not trust in others. Perhaps it’s trust in yourself.

Trust that you’ll be okay. Trust that you don’t always have to be in control.

It’s also about trust in something bigger than you–in God, faith, the universe, the good–whatever you choose to call it. Trusting that goodness will come your way. Trusting that the universe is out to help you.

In the end, we all know that death will come. Perhaps there will be pain. Perhaps I won’t be able to say when it will happen, where I’ll be, who will be around me, what care I will or won’t get. And that somehow I can still believe that it will be all be okay.

 

But there is one more lesson here…

There is a lot you can say about the end of your life–but you better say it now. Talk to your loved ones. Write your ethical will. Fill out that living will. Say what it is you want. Appoint that guardian or family member to speak for you when or if you can’t.

Say all the I love you’s now. Go on those dream trips. Make memories. Laugh, cry, make love, sing, dance.

You want to not be a burden?

Start now. Invest in your relationships. Call your loved ones and listen to their day to day problems. Spoil them with your time. Go for walks and hold hands. Tell them how very proud you are of them, of the kind, good people they’ve become–then they won’t think you’re a burden.

You want not to be in pain?

Don’t dwell on pain now–physical or emotional. Live “pain-free” by practicing forgiveness, letting go and laying old issues down. Pain thrives off tenseness, tightness, and focus. Pain therapists use many techniques to help their clients manage pain–laughter therapy, engaging the mind on something bigger, more interesting, acupuncture, yoga…by letting go of pain today, we don’t attract it tomorrow.

You want to not be hung up on control?

Start trusting today. Take a risk. Fail. Laugh it off and try again. When you feel like a knotted fist inside your gut, recognize it and choose to trust. Give someone a chance. Give them a second chance. Give yourself a chance. The person we least trust is ourselves. We mistrust our own goodness. We are our own worst critiques, our own biggest doubters. Start with small affirmations–say them out loud in the car or in front of the mirror:

“I trust my own good heart.”

The biggest concerns of life are no surprise–they’re our biggest concerns every day–when you come to think about it. Every day, we’re given a chance to face our fears–to see our own good–and the goodness around us.

If you’re a caregiver, and you’re with a loved one who is coming toward the end, reassure them–let them know repeatedly that they are loved, that you will do all they can to make sure they’re not in pain, that you will honor their wishes, you will be there–steadfast. They will not be alone. Each time you say this to someone else, you say it to yourself.

I know as a caregiver this time is scary.

You don’t know how. Perhaps this is the first time you’ve faced death in an intimate way–with a family member this close. I was just like you–my dad died in hospital–and I was facing the death of my mother in my own home. I worried if I’d be okay–if I could handle it–emotionally.

IYou will find your strength and resolve.

You will keep your loved one safe–and honor their life and their death.

You will give them the dignity they deserve.

Even though you may feel like running, you will be brave. You will be there for your loved one–and it will change how you perceive life–and death.

~Carol D. O’Dell

Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

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Randy Pausch died last Friday.

He’s the Carnegie Mellon professor who wrote The Last Lecture.

The book is based off a lecture he gave to his students that received such worldwide attention on YouTube. If you haven’t seen it on YouTube, here’s the link:

It’s not his usual style lecture since he’s a computer geek who teaches about virtual reality.
But Randy contracted pancreatic cancer.
It changes your priorities.
Randy’s last lecture was about play, integrity, falling in love, and purpose.
Randy lost his battle with pancreatic cancer last Friday.
His wife of seven years and three young children will miss him every day.  
He was 38 before he ever found true love.
He said something I’m passing down to my unmarried daughter.
“Don’t get married until you find a guy who has come to the point that your happiness matters more than his.” 
Randy and his family was featured on ABC last night.
It was about the most inspiring thing on television I’ve seen in a long while.
Here’s the link: abcnews.go.com/GMA/story?id=3633945
The Last Lecture (book and video) was written Randy says, not for the masses, but for his children.
He left behind what is referred to as an ethical will.
What is an ethical will?
It’s usually a written document in which you pass down your ethical, spiritual and emotional values.

Here are some common themes seen in many of today’s ethical wills:

  • Important personal values and beliefs
  • Important spiritual values
  • Hopes and blessings for future generations
  • Life’s lessons
  • Love
  • Forgiving others and asking for forgiveness
One such document was written by Barry K. Baines MD. His book is titled, Putting Your Values on Paper
I can say with great pride that Dr. Baines read my book, Mothering Mother and endorsed it.
I didn’t put Randy and Dr. Baines together until just now. Not until I started writing this post.
I love the serendipitous nature of life. No wonder this story moved me so.
Randy’s book and lecture is so about living, really living.
He says it’s about achieving childhood dreams, but I think it’s about capturing the essense of those dreams and living them out every day.
It’s also about who you are and what of “you” do you choose to leave behind.
My adoptive daddy had a profound effect on my life. When he died, I remember asking God to pass down Daddy’s mantel onto me. It’s a religious term that is mentioned in the story of Elijah and Elisha.
In case you don’t know or don’t remember, Elijah was a powerful prophet in the Old Testament. Elisha wanted to be his under study. Elijah told him that the only way that would happen was for him to follow him around everywhere and the moment God took him, Elisha had to be there to catch his “mantel.”
The story goes that a fiery chariot swooped out of the heavens, grabbed Elijah, and as he was snatched away–his cloak fell to the earth and Elisha caught it. Elisha went on to be a power prophet in his own right.
Now this story sounds downright Greek (as in a good yarn of mythical proportions). 
While you may or may not choose to take it literally, it’s about the transfer of power.
It’s about appreticeship and mentoring.
This is what I wanted that I wanted Daddy to pass on to me: 
Daddy posessed quiet power. Wisdom. Strength. Love of family. Dedication.
Honor. Thoughfulness. Old Southerness. Sweetness. Easiness, but with a line of “this is as far as you go.”
No one messed with my daddy. Everyone respected and admired him. Everyone. He had real power.
The kind you earn. The kind earned by staying married, by being a sharp shooter in World War II.
By walking a quiet, good life.
Do you know what the physics equation is of power?
(I watch a lot of TLC, and Discovery Channel).
Power  = Energy Divided by Time
You want to know how to add power to your life?
Put in a chosen amount of energy over a chosen amount of time–and you’ll have the equation to get however much power you want.
Say you want a powerful body. Muscles.
Go to the gym for 45 minutes a day four days a week for six months.
You’ll have power. You’ll have muscles. That simple.
We over-think, try to take shortcuts, and really it’s mathematical. Put in the time. Put in the effort.
What’s this got to do with ethical wills?
Those powerful people in your life–whoever you respect and admire–your dad, a coach, a teacher–you recognize their power, their expertise, the way they make others feel and how they inspire them.
You want some of their power, their inspiration after they’re gone. You don’t want it disappated into the atmosphere.
Like Elisha, ask for it. Put in the time. (He put in ten years)
Maybe this is what caregiving is–putting in the time and being there to catch the mantel.
Ask your loved one to leave a piece of themselves behind.
Ask them to write it down, or video or audio record them.
Get them to tell stories. Ask them who influenced them, who inspired them.
You can download an ethical will form, or you can simply write a letter to those you love.
Caregivers, I urge you to get your loved ones to do this on one form or another. You’ll be glad to have something permanent, something you’ll always treasure.
Randy Pausch inspired a nation.
In a publishing era that seems too often to be more about marketing and hype than substance, a little book and a YouTube video comes along and knocks the world off its feet.
He talked about what matters most–in the end.
Love, family, hard work, truth, play.
His children–and his readers are blessed.

Carol D. O’Dell

Author of 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

Kunati Publishers, www.kunati.com/motheringmother-memoir-by-car/ – 95k

 

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Caregiving does things to you–as a caregiver, a family member.

It takes you places.

At first, you might start out caregiving heroically–feeling that you can make a difference. You can “fix” this problem–that your loved one’s condition can be bettered if you could just…get in there…find the right doctor, get on the right meds, coordinate the proper level of care…

It’s a tough day when you finally realize you can’t fix your loved one.

You can’t fix their disease.

You can do very little to make anything about this “better.”

You learn to just live, love, and hope to be granted some small level of grace.

You may feel as if you’ve lost them forever and this can cause you to grow bitter if you’re not careful. We don’t like not being in control, not getting results.

 But what if one of the goals/purpose/benefits of your loved one getting ill, facing death is what it does to you, the caregiver? What if part of this is about you?

What caregiving does to you, asks of you, unearths in you? 

I’m not trying to be Pollyanna here.

Sometimes it all feels useless. You didn’t sign up for a life lesson, and this is really shitty. Pardon my French, but I’ve been there, and I used far more “French” than that in my caregiving years! 

If someone told me that I was supposed to get something out of caregiving, there would be some days that I would have definately thrown some heavy, possibly sharp object directly at that person’s head.

But as the target talking here, I’m going to duck and say it again:

What are you supposed to get out of this experience? 

I can’t, I refuse to believe that caregiving is just this terrible, horrible thing that you have to endure because life’s just like that. Caregiving is so much more.

As much as it feels as if your loved one’s personality is gone–that you’re caring for a body, not your mom, remember they’re deep inside. When my mother started to lose her essence, I had to sort of go on auto-pilot. I had to care-give because of my commitment, my integrity (which I was groping and grasping to hold on to).

The difficulty lies in the fact of what we knew they once were–vivacious, intelligent, gifted people who made an impact on the world.

I was in a caregiver support group recently where a woman shared that her husband was a Yale Law professor, and now he can’t even dress himself. Her grief was palatable. She was holding onto who he was–what he did, what he presented to the world. She hadn’t let that part of him go yet.

Although you may only get glimpses of your loved one, hold onto the knowledge that they’re there. It becomes a treasure hunt. I began to seek out glimpses of my mother.

I started to notice smaller and smaller details: the way her hands moved, the way she’d brush her hair out of her face. That was still her. I didn’t use my hands like that–that was her own distinct way. As the bigger, more obvious ways of communicating diminished, it helped to pull in, and find my mother as if we were enjoying a game of hide and seek.

Some nugget, some kernel of their spirit is still inside.

 

Since the release of Mothering Mother, I’ve spoken to several thousand caregivers and their loved ones across the country. I’ve visited care facilities, and I’ve found that no two people are alike. No two people with Alzheimer’s react the same way. Even in their “lostness” is unique.

I knew I had to let go of who my mother was, and sadly, I knew I had turned her into a list: mother, wife, minister, cook.

I had to decide to love who my mother is: a person, a woman, the core of a spirit.  

 

I read about a couple whose son had been in a motorcycle accident years before and was brain injured. He was still alive, but he wasn’t the son they knew before the accident.

They decided to hold a memorial service or celebration service–even though he had not passed away. 

They needed to let go of the son they once had–in order to embrace their new son. This new son still needed to be loved, still needed parents, but as long as they were holding onto that old son/old image–it hurt too much.

I know that parents of children with disabilities have to mourn their pre-conceived notions of their children, of what it would mean to be a parent. They must learn to love and embrace the child in front of them–their medical/mental challenges, the way they may look, talk, or act different. They must witness and embrace the new beauty, the new relationship before them.

This journey, this revelation changes them–and in the end, oftentimes makes them a better person capable of more love and peace than could have ever imagined.

You’re not really letting go of your loved one–of who they were, who they are–you’re enfolding that into you–you’re the keeper of time, of memory, of all you hold dear.

 

 

I love time theories and quantum mechanics, (I wrote several papers on it in college) and I read a great article by a physicist that explained that time and events(or place–for us to conceive time, we have to intersect it with place) can be seen as a wheel with each moment being a spoke–and our memory adds meaning to that event–so some moments or events “spike out.”

Each moment, each event stands apart and will always exist.

For me, my mother, myself, and all the moments I hold dear exist forever.

 My favorite author, Madeleine L’Engle says,

“The great thing about growing older is that we get to keep

every age we’ve ever been.”

 Carol D. O’Dell

Family Advisor at www.Caring.com

Syndicated Blog at www.OpentoHope.com

Kunati Publishers, www.kunati.com/motheringmother-memoir-by-car/ – 95k

 

 

 

 

 

 

 

 

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Those last few hours, days, weeks, or months are a mix or panic, sorrow, numbness, and tenderness.

It usually comes after an accident, diagnosis, or surgery–or sometimes, for our elderly, it follows a slow, painful descent.

However you got here, my heart goes out to you.

“I Don’t Know What I Should be Doing Right Now.”

This is normal. You feel lost, kicked in the gut–you have little or no experience at this.

I know your world feels as if it’s falling apart. You might feel the need to control everything, or you may feel that nothing is important. You may be going a mile a minute, making phone calls, demanding to see doctors, exploring treatment options–or you may be paralyzed and all you can do is sit next to your loved one and try not to cry.

Either way is fine. Your’re on auto-pilot. This is fight or flight. You wish you could just go back to life as before, but you can’t. You wish you could be a caregiver–as hard as it is, it sure beats feeling helpless.

Let others step in–or tell them everyone that everything can wait. Do what’s natural.

The Bare Essentials–A Few Important Things to Remember:

  • Get a piece of paper and pen–write down anything the doctors or nurses tell you–you’ll be glad you did when someone asks you something and you have a complete mind meltdown
  • Keep track of your loved one’s meds and treatment times–realize the care staff isn’t going to deliver the meds on the dot, but you have the right to ask–especially with pain meds (which can be done with IV) your loved one should be kept comfortable–and you can insist on this
  • Designate a liason–a family member or friend who can field calls and coordinate plans–they’ll feel useful and you won’t feel overwhelmed
  • Pace yourself. If you’re in a hospital or hospice or at home, know that you have to keep some strength and clarity in reserve–in case you need it
  • Get your sleep–and get a bit of fresh air–you may be called on to make a very important decision–do you really want to do that on no sleep?
  • If your loved one can talk, initiate a conversation about end of life care–feeding tubes, Do Not Resuscitate orders–if you have a living will, then you have it in writing–if you don’t, then as hard as this is, ask the nurse’s desk for one (the staff can get you one). It could save you so much heartache later
  • If you do have a living will, bring it to the hospital or care center. Even if the facility has one, you need the other copy with you. Trust me, these things can slip through the cracks
  • Be the family you are. Don’t let others judge how you’re reacting to this situation. If you’re not cuddly, then don’t do anything that doesn’t feel natural
  • Know that you can’t control others actions–some people may rush to your side, others hang back. Let everyone “be” without worrying about them. Stay focused on you and your loved one

I’m Already Wracked With Guilt and Regret–We Should Have Caught This Sooner, I Should Have Done More…

These are normal feelings. It gives our brains something to do. We’re under the illusion that we control things, that if we had done this, not done that, that things would be different. Life is bigger than us mere mortals. Try not to stay in this awful, negative vortex.

You’re spinning your wheels and taking valuable time and thought –and love away from your your loved one and the time you have together. Stay Present.

I Can’t Think Straight–Shouldn’t I Be Making Plans?

Only if that brings you a measure of comfort. It will all work out. Let your liaison coordinate anything you’d like done now–flights, checking out care facilities, etc. This isn’t the time to get caught up in the doing–and if you are, do it because it’s your coping mechanism, not because you think you should.

When Do I Start Making Funeral Arrangements?

It’s different for everyone. Some people have family plots and know their local funeral director as a friend. Others are new to their area and haven’t a clue.

Are you the type to ask a doctor flat out how long does your loved one have left?

Do you want to know?

It’s okay not to, everyone’s copes differently. Also know that doctors are not infallible. They can be wrong. They can misjudge. Life is determined by the will–and the spirit. But if it would make you feel better to have a general time frame, then ask a doctor or nurse–ask if it’s time for hospice–enlist all the care you can get.

Hospice will be more wiling to talk about the death and dying process than doctors will (usually) -and palliative care (pain management). Some doctors resist hospice, but I find they’re a valuable resource to families. It doesn’t mean your loved one is going to die this second because you ask for hospice. It means you’ll have the support you need–people that have been through this.

Should My Loved One Stay in the Hospital, Go Into a Hospice Center or Should I Take Them Home?

Again, what’s right for you? And your loved one? Have you talked about this before? Have you ever thought about it? Is there care manageable at home? Will that be more stress on you–or less?

It may take you a while to figure out what feels right, and sometimes you figure out what’s right by what’s wrong–if the hospital is getting on your nerves and you just one everyone to go away and for it to be a time of peace, then you probably want a hospice center or to return home.

Does the care feel overwhelming to you? Would you rather go to a care center and let others take care of things? You can spend the night there, and most hospice centers are very thoughtful and serene.

Or does home sound like the only place you and your loved one wants to be. Home hospice is available as well, and pain can be managed from home.

You’ll figure this out along the way. Don’t feel pressured to make decisions prematurely or on someone else’s timeframe. Trust your gut.

For some, this is a deeply spiritual time, a time when faith is important. Even if you haven’t turned to your faith in years, if it feels right, then ask to see a chaplain, priest, or rabbi. Faith can oftentimes give you a measure of comfort and hope.

I’m Scared if I Stop Moving, I’ll Fall Apart

Is it so bad to fall apart? I know you think that if you do, you’ll never function again. You will.

If you truly can’t let yourself fall apart now, then set a date–in the future–and give yourself permission to fall apart then. Eventually, you’ll need to cry and scream, and beat something. You’ll need to curse, or sob, or fall to the ground. This is all a part of grief, and grief starts long before the last breath.

Losing a loved one is about the hardest thing you’ll ever do and the emotions that come with it are some of the hardest, strongest, saddest, awful-est time you’ll ever go through. But you will.

You will keep breathing. Your heart will keep beating, unfair as it is. You will.

But for today, be present.

If you have only days, weeks, or months left, then gather and treasure every sweet moment you have–

Carol D. O’Dell

Author of 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

Kunati Publishers, www.kunati.com/motheringmother-memoir-by-car/ – 95k

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