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Posts Tagged ‘cancer’

I have a dear friend who has lost 2 sisters to breast cancer and another sister is recovering from the same disease. Cancer has not only ravaged the bodies of the women she loves, it’s left her entire family in fear. She says that most days she ping-pongs between greif and worry. She was their sister, their caregiver. She watched them struggle, and yet she couldn’t save them. 

For well over a decade she has lived in a medical vortex–spending her precious time in oncologist’s offices, hospitals, and participating in studies to try to help scientists gain insight into how to prevent these types of cancers from sprouting in additional family members.

Caregiving a sister is so hard–letting go of someone who has known you your whole life and then having to go on livie as best you can–without them.

She has been consumed by cancer–in every way. She and her daughters are in a cancer study and she knows more medical jargon than JAMA (Journal of American Medical Academy). In the midst of trying to be a mom and enjoy watching her own daughters blossom and go through the rites of passage–learning to drive, prom, boyfriends, college–her joy is tinged with the unsaid words: who’s next?

She fights to live a full life and capture every celebration that comes her way, but there are times when grief rolls in. It can’t be stopped, denied, or ignored. It is relentless and all consuming. But she can’t crawl into a ball like she’d want to, she says. Her daughters and her sister’s daughters need her. My friend has learned a sobering lesson–she values her family. She values today. It’s all she has.

I have no answers. I think we have no choice but to face what comes our way–even when we don’t want to. We can only avoid it for so long. I don’t know why some  people have to face things so overwhelming that it just doesn’t seem right. But I do know what all we can do is to ride the swells of life’s joys and we then plung with the sorrows. To be human is to experience both–and yet not let either extreme consume us. Life is both and all that is in between.

To be loved gives you strength.

To love gives you courage.

Lao Tzu, Chinese Philosopher

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If you are fortunate, you’ve had many conversations with your loved one.

If they’re your parent, your conversations probably started before you could speak. You heard their voice, their lyrical baby talk, their lullabyes sung in the dark of night as you were held tight.

Your conversations changed over the years–from childhood discipline, “Don’t ride your bike without your helmut,” to the pre-teen birds and bees mubo-jumbo they could barely get out, and your talks became more about schools, jobs, marriage, and kids of your own.

You’ve banked a lot of hours. Stephen Covey, author of Seven Habits of Highly Effective People and The Eighth Habit calls this making deposits into your emotional bank account. Every time we say an encouraging word, offer much needed advice, pass on a family story about crazy Aunt Jo adds to our collective memories.

Our family conversations are woven into who we are and the choices we make. This investment of time, talk, listening, encouraging, and even admonishing cement our love and commitment. And when we need something from this person–to speak wisdom into their life, to ask for care, attention, or respect–we can draw from that account. We’ve earned the “interest” so to speak.

And now you find yourself in the caregiving years. Whether this is with your spouse, your mother, father, or sister, all of those gathered conversations become even more precious when you come to the end of life. Even the medical profession is now recognizing the need to talk candidly to their patients about end of life and quality of life decisions.

At some point, you will have a final conversation.

You might not know it, and perhaps you shouldn’t. It’s not about saying just the right thing. It’s not about saying good bye even, it is and isn’t a culmination of all your talks–the baby talk, lullabies, warnings, corrections, arguments, growing pains, and reconciliations you’ve had over the years.

Technically, that last conversation may in a car, over the phone, or in a hospital bed, holding hands. It will, in years to come, be precious.

There are no guarantees. Our loved ones can walk out the door this minute, and we won’t have the privilege of knowing that death is on its way. Sometimes it’s quick, too soon, and all together unexpected.

For others, it may be the slow road of Alzheimer’s, or the painful road of cancer. We may find ourselves calling hospice, and making memorial plans as our loved one lingers.

So how do you say good bye? And should you?

Yes. If you know your loved one is dying, it’s important to have that last conversation. Those who work in hospice will tell you that this quiet moment is important to both of you.

What do I say?

Of course, it’s different for everyone, but many times our loved ones need us to to them:

It’s okay for them to go…that we love them and always will, but we’ll be fine.

We are the ones holding them to this life, and sadly, we may unintentionally be tying them to a life of pain and emptiness. Tell them it’s okay for them to go now Tell them not to worry. Assure them you will be okay.

It’s important to say I’m sorry–and I forgive you.

You may have said it a thousand times, or never have said it in your life. Do it. No one can have a relationship without some hurts and misunderstandings building up over time. This isn’t something you want to regret later, so say it, feel it, and let it go.

I’ve heard so many stories about how after saying these simple things–you can go now, I’m sorry, and forgive me–that their loved one passes away in peace. It’s also a interesting phenomenon that is observed in hospitals and hospice situations–a loved one hangs on, excruciatingly long, and then when their family leaves–for a meeting, or out of exhaustion and need for sleep–the loved passes away when they’re finally alone.

I can’t tell you how your last conversation should go.

Everyone has their own style, their own family’s culture and personality–some are wordy, others are witty, a few are formal and stoic…it doesn’t matter.

Be yourself, but be there.

Talk, or don’t talk (who says a conversation has to consist of words?)

Hold hands, hum a hymn, read from the Bible, or recite a poem or sing a lullaby, or sit silently.  If you feel like they still can’t let go, then consider stepping out. You’re not abandoning them. We can’t go with them, and for some, it has to be done alone.

Whatever winds up being your last conversation isn’t a mistake.

Nothing is a mistake.

Trust that the simple banter about feeding the cat or pick up the dry cleaning is just the talk you needed to have. You may look back and recognize that the words or look or touch you’re seeking occurred weeks or months before.

Be at peace and know that in many ways, your last conversation hasn’t happened yet.

You can continue to talk, journal, whisper and pray. Your story, your conversation, and your loved one goes on.

~Carol D. O’Dell

Author of Mothering Mother, available in hardback or on Kindle

www.caroldodell.com

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Today, the Today Show had a six-year old little girl on their show who is a singing sensation. She can belt out the national anthem with a voice to rival Ethyl Merman. Natalie Morales introduced her and said that the little girl also lives with autism.

Words are important. Autism cannot be viewed as a death sentence–especially not for a child who has their whole life ahead.

Living with or suffering with makes a big difference.

If you have Parkinson’s, Alzheimer’s, MS, or cancer, you have to eventually come to choice–do you choose to live or suffer?

Personally, I hope to never say the word, “suffer” again. I don’t want to suffer with anything!

Suffering implies pain, sorrow, heavy burden…agony. And yes, there are moments, days, even months where pain and sorrow overwhelms life–but as my very religious, very southern mother used to say when asked how she was, she’d reply…

“Well…I don’t want the devil to hear me!”

She didn’t want to entomb herself in negativity.

Caregivers, how do you talk about your role? Begin to observe your words.

How do you introduce yourself?

“I’m just a caregiver?”

“I’m just caring for my mom?”

Really? Just a caregiver? That’s like saying you’re just the president of the United Stats, just a mom, just a CIA assasin!

Even if you are at home with your loved one, or even living with them. You can introduce yourself any way you like–”I’m an artist, I’m a teacher (even if you’re not in a classroom now, do you ever stop teaching? I’m in school (are you taking an online class? That counts.”

If you introduce yourself as a caregiver, then do it with pride.

But also introduce the fact that you’re a daughter, a wife, a friend. Your role as a caregiver is admirable, but your loved one needs to hear you say that you’ll always be their daughter/sister/spouse first.

How will anyone respect you and perceive what you do as important if you don’t?

Choose. Choose your words. Choose to care for your loved one.

No one is making you be a caregiver. You may think they are. You may believe that you have to, that your loved one has no one else, that it’s your responsibility…but realize that it is a choice. Other people in your same situation have said no. The world will not end. Is it the right thing to do? To say no? Every family is differentt, and my point is that you choose.

If you choose caregiving–part-time, full-time, in your home, their home, as a working caregiver, or an advocate for your loved one who is in a care facility–whatever the living/working arrangment is–choose. Caregiving is a part of who you are, it’s a role, what you do with your time and energy.

Take the helplessness, choice-lesness out of your vocalbulary.

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

It’s available on Amazon, other online stores and in bookstores. Kunati Publishing

I’m a family advisor on Caring.com, and my syndicated blog appears on www.opentohope.com.

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Statistics show that people spend about 4.5 years caregiving.

The average person with Alzheimer’s lives 5-8 years. That means there’s some time they might not be receiivng care–the early years before they’ve been diagnosed when they’re able to cover it up, make excuses, or their family members are just too inundated with work and children to even notice.

But once you start caregiving, there are four major cycles. Think of a pie cut in fourths.

Something has happened. Mom or Dad (or your spouse, sibling, or even child) has had a debilitating accident, a heart attack or the onset of another illness. Perhaps a bout with cancer. They need you and perhaps for the first time, you realize you may not always have them in your life.

The first slice of the caregiving pieis when you’re just the watchful eye in your loved one’s life. They may still  be living at home, or they may plan to return home after things get a little easier. After the hospital or rehabilitation stay, or initial diagnosis, you find yourself calling them more often, spending your nights or weekends with your loved one. They might even choose to downgrade at this point–move in with you or into an apartment, or into a gradated living situation (they can trade in their home or apartment for assisted living when the time comes). You might do some chores for them or accompany them to the doctor so you can see what’s going on. On the whole, your life continues on (after the big bump in the road) with just a few more calls or visits added to the norm.

This stage can last for months or even years depending on your loved one’s age and the progression of the disease.

Emotionally, it’s the first timeyou’ve realized your relationship and responsibilities have changed. You feel a twinge at the thought that your loved one won’t always be in your life. You begin to value the time you have together, and although you worry a bit about the future, you don’t do a whole lot about it–in part, because of denial–it’s just not that bad yet and without saying it, you need things to go on status quo. Soon, I’ll check into care facilities, soon, I’ll sit down with their doctor and have a serious talk about the progression of this illness, soon, I’ll gather community resource information…

Complications. Perhaps another heart attack, more than the occasional forgetfulness, or another diagnosis–now your mom or dad (or spouse or sibling) has two major issues.

You’ve entered the second and third quadrant of your caregiving cycle. One melds into the other as your role as a caregiver increases. You go from spending half your time to most of your time caring for your loved one. They maybe wheelchair or walker bound. If they have Alzheimer’s or other neurological disorders, they may not remember you anymore. You’re questioning if you can still work or if your loved one needs full-time care. Maybe you’ve hire home health care during the day and you cover the nights. You might spend weekends at their house or you may need to go ahead and move them into an assisted living facility.

Emotionally, you now consider yourself a caregiver and no longer just a son or daughter or spouse. You’re doing things regularly that a normal, healthy person would do themselves and that makes you a caregiver . This might include financial or medical management, clothes and body care, wound care or injections for diabetes. You’ve learned a lot, and whether you wanted to or not, you’ve had a crash course in caregiving. You might not know all the community resources, but you’ve pieced together a few. You’d like to know more–more about Medicare, more about what their insurance will and won’t cover, more about the disease–but who’s got time? You’re juggling your own marriage, kids, and life. You’ve felt a real strain on sleep and relaxation, and it’s even hard to relax any more. You may have already cut your hours back at work, or quit–and if not, you know the day is coming. You think about the future–too much.

This stage can last weeks or years–and it is insidious and draining, but you know your loved one needs you, so you just have to limp by. 

It might be like a slow drip or another traumatic event, but caregiving has taken over your life. You’re now a full-time caregiver. This doesn’t mean that you don’t still work–maybe you have to, but all your time, energy and thoughts are consumed with the needs of your loved one.

The fourth quadrant of caregiving is the most difficult. Your life as you once knew it over, and it’s been over. You’re consumed and numb and most days, you just wish it were over. You ache for your loved one who is now incapacitated. You do pretty much everything for them. They are either bed bound, wheelchair bound, or bound in their mind no longer connected to reality. Your days and nights are spent either giving or managing care. Your health and relationships are suffering, and you know that there’s no turning back–their illness or debiitation has increased to the point of no return. Still, you love them, find moments here and there that are sweet, but the exhaustion and frustration is bone-deep.

At this point, your loved one either enters hospice or if you have not done so already, they enter a care facility that may also include a memory disorder unit.

Emotionally, you admit defeat. You’ve done all that you can. Guilt and regret are plenty, but you now surrender. You can’t or won’t do it any more. You have a difficult time talking to anyone about this. You feel like a horrible person, but you want your life back. You want and need it to be over.

Surprisngly, your loved one may live weeks, months, or years.

***

I would love to give you a different outcome. If your loved one is young or suffered from an accident, they may be able to rebound. For the extreme aged, or for “life limiting diseases,” your loved one will not come back to you–not like they were. This sounds bleak. After the months or years you’ve spent caregiving, and this is the end?

Yes. But not all is in vain. Good has come from this, and while yes, you’d do some things differently, you’ve learned a lot. I know you can’t feel it now. You can’t feel anything. Quit. Stop. Either get hospice or get them into a facility. You need to stop. You’re a good, loving daughter, son, wife, husband. I know you don’t feel like it and if anyone knew what you’ve been thinking…

I know, and I’m telling you, you’re still good.

It’ll take a long time to recover, but you will. Your loved one will pass away, eventually. Make peace with that–with who they are, who you are, and with your journey. Rest. Let go. Yes, keep a vigilent watch as others take your stead, but it’s time to sleep better, eat better, and rebuild your life.

For those whose loved one’s live on, the caregiving cycle repeats in a way. You’re more of an observer as your loved one continues on in a care facility or on through hospice. You simply can’t do it again. Not in the same way.

My mother took that last turn and I called (and insisted on hospice). I chose against a feeding tube as she forgot to eat and swallow. Hospice came in March and she passed in June. You will have to find your own way, your own peace. Go deep in your own heart. Talk to a chaplain or someone you consider wise. I know that each person must follow their own heart, but I do implore you–at some point, you will have to let go.

It took several years after my mom’s passing to come to a place of deep peace. Some days, I felt as if i had killed my own mom, and if it weren’t for hospice reassuring me that I was continuing to show my mother love, I would have crumbled. For those in pain, there’s palliative care, which is such a blessing when needed.

I don’t write all this to depress you. I wish I had seen the bigger picture. I wrote Mothering Mother so that others wouldnt’ have to go it alone.

~Carol D. O’Dell

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

available on Amazon

www..mothering-mother.com

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