What Caregiving Taught Me

After a decade of caring for my mother who had Parkinson’s, Alzheimer’s and heart disease, then brought her into our home the last 2+ years of her life, this is the distilled version of what caregiving taught me. I am profoundly grateful for these lessons.

1. To stand up for myself, and caregiving will give me plenty of opportunities to do so.
2. There is a time in life in which you sacrifice for someone you love–and a time to stop sacrificing.  
3. It takes humor to tackle the big scary things in life, like caregiving, disease, and death.
4. Caregiving will inevitably bring out the worst–and the best in me.
5. Caregiving will change me, but it’s up to me to determine how.
6. I can’t stop death.
7. I can decide how I will live the next moment of my life. One moment at a time.
8. My emotions are my body’s barometers. I need to listen to these cues, feel them, use them as a catalyst, but know that no one emotion will last forever.
9. To pace myself. Burnout is very real and very dangerous.
10. I can’t meet all the needs of another human being. I can’t take the place of my care partner’s spouse, career, friends, or health.
11. Caregiving is about integrity. I have to choose what is right–for me–and for all the others in my life. No one person gets to be the “only one ” 
12. When I start to give too much to caregiving, it means I’m avoiding some aspect of my own life’s journey.
13. Caregiving  isn’t just about caregiving. It unearths every emotional weak spot I have–not to destroy me–but to give me a chance to look at, and even heal that area.
14. I have to stop being nice and pleasing people. “They” will never be satisfied or think it’s enough. What’s best for me–truly, deeply best–is best for those around me.
15. Learning to stand up to relatives, authority figures, to my parent or spouse, and even a disease teaches me to be brave, a quality we need.
16. Give up perfect. Go for decent. Do more of what I’m good at–and ask for help on the rest.
17. Don’t isolate myself. Being alone, depressed, and negative is easy. Fighting to stay in the game of life–that’s tough, but worth it.
18. If or when my care partner needs more care than I can provide, or even dies, that doesn’t mean I’ve failed. It means I’ve done all I could and it’s time for change.
19. You will go the distance. You will live at hospitals, stay up night after night, weep in the deepest part of your soul, question everything you’re doing…and barely come out alive. Caregiving asks, takes this from you. Through this process, you will transform. You will see who you are–the whole of you. You will survive.
20. Choose to care-give–then do with heart and guts.

To love makes us brave. To be loved gives us courage.

                                                                                                                                       –Lao Tzo, Chinese Philosopher

Carol O’Dell

Author of Mothering Mother

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When Cancer Ravages a Family: Caregiving Two Sisters and Facing Grief

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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Are You Afraid to Die?

If someone asked me that point blank, I think I’d say, “Am I Afraid to Die–literally or in theory?”

Most of us aren’t afraid of death per say, we’re afraid of dying. Will it hurt? What comes next? I don’t want my loved ones to hurt…those are the concerns that cause us to wince.

I was my mother’s daughter/full-time caregiver, and my mother passed away in my home with me beside her. I got a ring-side seat for this event and I am profoundly grateful for this. We try a little too hard to neatly contain the messiness of life and birth in our modern world, and we don’t know up-close what the entering or exiting of life looks like. I want to know. I do better knowing.

I was scared to death (word pun, here). I didn’t know if I could handle my mother’s passing. If you’re facing this–as a spouse, a daughter, a son, a dear friend–know that you can. It’s not scary. It’s holy. It’s quiet. It’s easy. It’s hard. I need to mention that it’s hard, but it’s a good hard. It feels like something you’re supposed to do.

Are there some less-than-pleasant biological factors involved? Can be. That’s why hospice is a great support for the end of life. But do know that they’re your support system. Don’t hand this over to them because you think you can’t handle it. Let them show you how.

 I believe it’s vital–after caregiving–to finish the process. You will come out “cleaner” from the experience if you see it through.

In theory, I know that death, (even mine) is inevitable. In theory, I know how a car works, but I sure couldn’t build an engine. Some things require trust that once you’re there, you’ll know what to do.

 I am a person of faith, but I don’t have the hard-fast beliefs I used to. I believe I’m eternal–in some form or another, and I’m less concerned about the location of my after-life. I figure it’s a great big universe, and whether I’m an atom or walking on streets of gold, I’ll be okay. I have a good feeling about it all, and I don’t have to comprehend the details because frankly, if my puny little mind can comprehend the magnificence of the afterlife, then it can’t be too impressive…and I’m looking forward to mind-blowing more than I can possibly comprehend–bring it because I know that eternity is going to be a-maze-ing. (a maze…)  

It’s the jumping off point that has me a bit concerned. Like most folks, I’m not ready to die–today.

 If given the choice, I’d like to hang around a little longer–a few decades, at least. I don’t think growing older makes you suddenly want to stop living either. The only people I know who are wiling to check out are those who have been in excruciating pain–physically or mentally.

 A few people go out gracefully. Their bodies wear out, their loved ones have already crossed over–and they make their peace and let go of this world as if waving goodbye to a dear friend you know you’ll see again soon. Very few. I’d like to be in these ranks, eventually. I’d like to not claw onto this world and the people who have loved and cared for me–I’d like not become a ravenous animal who won’t move on, but I’m not making any promises:)

It reminds me of the old American Indian saying when met with a battle that may end their life, when you know it’s coming, it’s best to take on the mentality, “It’s a good day to die.”  That’s what I’m aiming for when my time comes. I’d like to be the kind of person that recognizes it, steps up to the plate, and chooses to step off the ledge–rather than being pushed.

I think it’s important to ask yourself the question, “Am I Afraid to Die?” Don’t try to force an answer. It’s about pondering the question. Being afraid to die has a lot to do with being afraid to live–and that’s what has my head spinning.

~Carol O’Dell

Author, Mothering Mother

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I’m Afraid I Won’t Get to Say Goodbye

Are you afraid you won’t be there when your loved one passes away?
Take a moment and be with them now. Close your eyes and talk to them.

A friend called me tonight. She was upset.

Her grandmother had a heart attack–and it doesn’t look good.

She’s afraid she won’t get there in time.

The holidays are a tough time to add grief and worry to the mix.

Not that there’s a good time for a loved  one to die, but it just doesn’t seem right when it’s the holidays.

This is supposed to be a happy time, right? A time for family.

If only disease and death were that courteous–to give us a few days a year of peace.

But unfortunately, it may come at a time when everything in you says, “no, no, no.”

I had a talk with my dad in the middle of the night. I had dreamed about him. I don’t even remember now what the dream was about.

He was having yet another heart surgery–and I woke up–the dream had been so vivid. So, I got up, and he and I had a talk.

Daddy didn’t die for another eight months, but this experience was so real, and ever since, I’ve been so grateful for that quiet time with just the two of us.

 

I listened and suggested that my friend take a few minutes alone and talk to her grandmother.

You can’t always control timing. You can’t always travel–so don’t wait to have that heart-to-heart talk.

Time, distance, disease, loss of memory, and even pain…our prayers, thoughts, and love can transcend all these barriers.

Don’t wait until you get there–planes and cars take time–the power of love is instantaneous.

 

If you’re in this situation, I hope you’ll take a few moments.

Tell them you love them.

Tell them it’s okay to let go now..

Tell them you’ll be okay.

If you need to, ask forgiveness–and accept forgiveness.

Thank them for who they are to you, what they mean to you.

Accept this experience into your heart. This is just as real as if you were to physically be in their presence.

Be at peace.

If your loved one passes away before you arrive, then you’ll have already said what you needed to say.

~Carol O’Dell

Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

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How Do You Tell a Child a Loved One Has Died? Dealing with Grief

Every day, a child’s mother, father, grandmother, grandfather or sibling dies.

Experiencing death while still a child is common, but that in no way makes it less difficult.

There are ways to help a child deal with grief.

When a child loses a loved one to death, that loss can have a profound effect that can even last a lifetime.

Emotional, psychological and physical trauma can occur and effect how a child views the world.

If grief is talked about and a child is given the proper coping tools, is surrounded by love and support, then the negative impact can be lessened.

But too often, adults are at a loss. They’re grieving themselves, and they don’t know what to say or do to comfort a child.

They don’t know how to tell a child that someone they love has died.

They don’t know how much to share with them–they either tell too much or too little.

Adults can simply “freeze” and stop communicating, and the child is left to grapple with their sorrow alone.

They can also insist that the child be happy and move on–because it makes them feel less guilty. They try to live life through their child–but children also have their ups and downs when it comes to grief. They can’t be puppets that we demand to be “okay,” because we need them to be.

Many people expect and demand that children are expected to go on with their lives.

They want them to hurry and go back to school. They don’t want them to get behind. How sad. Something as profound as a parent, sibling, or grandparent dying is so much more significant than an A in algebra.

Just days or even hours after a grandparent dies, many children are expected to return to school, sports and activities. Adults someone need the child to be busy so that they can deal with “adult” matters of business and details, but the child has his own grieving process to go through.

Children have so many issues to deal with–growing up, adolescence, fitting in, weight issues, pressure to smoke or smoke pot, divorce, family issues, academic and social issues–and it starts at a very young age.

When are they supposed to feel safe and free to open up and talk?

When can they express how much their miss their grandad?

How Do You Tell a Child That a Loved One Has Died?

Keep it simple. Use “died”, not “He is sleeping.”

Allow your child to express raw feelings freely or ask questions.

Answer questions honestly and simply. Do not go into detail, unless asked.

If the death was due to a violent crime, explain that they are safe now, nd you will do all you can to make sure they stay safe. 

Offer a comfort object–blanket, doll, teddy bear. Even if they’re “older,” something cuddly can reduce anxiety.

If the body is suitable for viewing, allow the child to see your deceased loved one, if requested. Prepare the child for what he or she will see.

Tell your child what will be happening in the next few days.

Give your child choices in what to do. Some children want to go to school the day of the death–it’s comforting and feels “normal.” Give them a choice. Whenever they return, inform the school of the death before your child returns.This makes their teachers and classmates more sensitive. Most schools have a school counselor that can also assist and be made aware of the situation.

Reassure your child that he or she will be cared for and explain the plan.

Children sometimes open up easier if they’re doing something with their hands–playing cars or helping bake cookies–it can take awhile for them to feel safe–and they feel less on the spot if they don’t have to look at you but can pretend to be “busy” with their hands.

 Don’t Know How to Talk To Your Child: Here’s some Easy Conversation Starters: 

 I’m sorry your grandmother/papa/mom/dad/sister died.

 What was your dad/mom/brother like?

Tell me about your__________. 

What was his favorite food/book/thing you did together?

 What do you miss the most? What is the hardest time of day for you?

I cannot know how you feel, but I remember how I felt when my __________ died.

 Whenever you want to talk about it, I’m here.

I’m thinking about you especially today because I’m aware that today is your mother’s birthday (anniversary of the death, your birthday, etc). 

If you don’t want to talk, we can still spend time together.

 

WORDS THAT CAN HURT:

I know just how you feel. I know just how you feel…my dog died last year. Lick your wounds and move on. You’ll get over it. It will be okay. Don’t think about it. You are better off without him. Don’t cry. It’s your fault. God took him so he wouldn’t be in pain. Tears won’t bring her back. Be strong. Forget about it. You are the man/woman of the house now. You should feel ….(proud, relieved, happy, sad, etc.)

Children May Express Grief Differently Tnan Adults:

Their emotions may experience highs and lows. They may laugh inappropriately–even at the memorial service. Don’t think this is because they don’t care. It’s difficult for a child to figure out how to handle their emotions. They may avoid sleep–or a teen may sleep all the time. They may zone out and not seem to hear anyone talking to them.

Become clingy and panic if you’re not home on time or don’t pick them up on time. Act rough or violent toward a sibling or friend. Defiantly disobey.

Teens may become daredevils–drive fast, extreme sports, breaking and entering–anything to feel “alive”

They may even try to “test” your love.

When Do You Seek Professional Help?

When the symptoms (lack of sleep, depression, agression) continue for weeks or months and grow in intensity.

When they can no longer function in school or around other people

When they isolate themselves for too long

When they become dangerous to themselves or others

They fixate on death, experiment on animals, or are exhibiting cruel behavoir

What do you do if you suspect your child or teen is not handling grief well?

Talk to the school counselor, your pediatrician, or clergy

Get a recommendation for a therapist who has helped children through grief.

Don’t settle for just a prescription. Talking and expressing their emotions is crucial to the healing process.

Don’t go just one or two times and think your child is “better.” Follow through and be consistent.

The Best Advice?

Be patient. Expect some some highs and lows. Share your own grief journey. Listen. Reassure. Be there. Provide help if or when it’s needed. Let them know it’s okay not to be able to handle this all by yourself–we all need each other. 

 

In the United States, approximately 4.8 million children under 18

are grieving the death loss of a parent.

~Carol D. O’Dell

Author of Mothering Mother, available in hardback or on Kindle

www.caroldodell.com

Helpful sites:

www.opentohopefoundation.com

www.beyondindigo.com/children

www.griefnet.org

www.childrensgriefnet.org

www.kidsaid.com

I’m Carol O’Dell, author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir, available on Amazon. I hope you’ll visit my blog again.

www.mothering-mother.com

 

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That First Month of Grief–What is Shock? How to Get Through After Your Loved One Dies

The first month after your loved one dies is perhaps one of the scariest,

most dreaded times in a person’s life.

Losing a spouse, a parent, a child is devastating. But somehow, you will get through.

I know you don’t think you will.

But there’s this little thing called breathing. Your body does it whether you want it to or not.

Your heart can be breaking, your gut wrenched, and you can feel as if you will truly lose your mind–and your body will continue to take its next breath. There will be times when you don’t want to breathe. You don’t want to live–the pain is so intense. Just let your body get your through for now.

It’s a divine design–to keep our heart and lungs on automatic.

I’m sure I would have either forgotten or opted not to breathe, not to allow my heart to pump if I had any say in the matter. But this sheer involuntary response is the only way to go on during those early days of grief.

Death comes in many forms–by way of an accident, or after a long agonizing illness–it’s never easy.

Even when you’ve been caregiving for years and you know your loved one is no longer suffering, almost everyone has a difficult time letting go.

Why? Why is it so difficult to watch death take those we love–even after pain and suffering, and even old age?

I believe because there’s something in us that deeply believes in the eternal.

Our brains do not compute that life is simply cut off. I’m not basing this on any particular religion or theology–I’m basing this on biology–we cannot comprehend that someone we know and love was here yesterday–and is not here today. Those who look at this purely scientific would say that it’s mere habit–but something in me feels that it’s more.

Why, after practicing a lifetime of faith, and believing with all our hearts that we will see our loved one again–is it still so hard to stand next to their lifeless, breathless body and kiss them goodbye?

The same reason a toddler cries for his/her mother. We don’t like separation.

And those early days of separation are very, very difficult.

What’s it like? That first month?

Experiencing a death of someone we love–at any age, and for any reason, usually means that we go into shock. Not only have I experienced the death of several loved ones, like you, I have many family and friends who have also experience grief and loss.

By looking at these first few days and weeks, we can begin to see a pattern–in ourselves and others. It’s less scary to know that we’re not alone, and that our bizarre thoughts and actions are something others experience as well.

What is shock?

It’s our body’s response to trauma or pain.

Physically, speaking, shock is when the body isn’t getting enough oxygen. It can occur after an injury when the body shuts down (the blood stays close to the heart to preserve life at its core level–or it can occur after a severe emotional trauma.

WebMD desribes shock as this:

1. A sudden physical or biochemical disturbance that results in inadequate blood flow and oxygenation of an animal’s vital organs.
2. A state of profound mental and physical depression consequent to severe physical injury or to emotional disturbance.

If you’ve ever experienced shock (yourself or by witnessing it in another person), one of its prime characteristics is that you’re probably not reacting to pain (physically or emotionally) as you would expect.

Car accident victims can walk around with a head wound or internal injury–and only after minutes or even hours does the body “compute” the damage and begin to react. This may give the person time to rescue a child or get out of a fire.

Emotional trauma shock can present with similar symptoms–the person may talk or act rather normal, even when you would expect them to cry or scream or fall apart. They might eventually do all those things–but it may be weeks or months later. The mind has the ability to stay “in shock” much longer than the body–and it will usually only allow the person to really feel and experience the deepest levels of grief when it’s safe.

The movie, Reign Over Me is a great example of emotional shock.

Adam Sandlerplays a man who lost his wife and children during 9/11. He spends years in “shock,” and the exploration of how this man deals with grief in an unconventional way–and the arguments that the social and mental health community make to try to “fix” him, is interesting.

Every person’s journey with grief and loss is different. Honor yours.

Trust your gut, your shock will get you through.

During the first month you might: (no two people are the same)

• Be able to plan an elaborate funeral or memorial service
• Hold yourself together–be courteous, thoughtful and polite
• Look healthy and strong
• Go back to work days or weeks after your loved one passes
• Feel euphoric–an urgency to get on with life
• Plan a trip, go shopping, or other ordinary things
• Go off with friends and do things you haven’t been able to do in a long time

But…if you observe grief and shock a little closer, you’ll notice things aren’t quite what they appear on the surface.

You might also:

• Feel high strung, nervous, agitated
• Can’t pay attention, get bored or antsy with people
• Suffer from insomnia
• Have a panic or anxiety attack when you’re out in public
• Zone out and not remember where you are
• Feel guilty and think you caused your loved one to die (by taking them to the hospital, or not taking them, or a myriad of other decisions you had to make)
• Forget things–your keys locked in the car, your wallet at the gas station
• Avoid falling apart or crying because you may feel like once you start, you won’t be able to stop
• Have nightmares, even scary dreams of your loved one coming back alive–but not alive
• Become obsessed with something–putting your affairs in order, doing something your loved one nagged you about but you put off–but now you’re doing it to excess
• Do something, anything to feel alive–gamble, go to Vegas, visit online chat rooms, shop too much, eat too much
• You may start to snap at people–or cling–can’t let yourself be alone
• Your emotional pendulum keeps swinging wider and wider

Practical Things You Typically Do The First Month:

• File for and receive the death certificate (that’s tough)
• Contact your life insurance
• Decide when or if to go back to work
• Comfort others around you–children, friends, even when you don’t feel like it
• Cancel credit cards and put your house or car in your name only
• Pay the bills associated with your loved one’s passing–funeral expenses, etc.
• Decide to buy or sell certain items
• Figure out how to pay the bills or deal with repairs–whatever your spouse/loved one did that you now must do
• Catch up with your lfe–if your loved one was ill, there may be many things that need your attention now
• Write thank you notes and figure out how to handle your relationships with this new change

Emotionally You’ll Have To:

• Make calls and let businesses know your loved one has passed
• Talk to many family and friends–and some of them will be awkward and say the “wrong” thing
• Walk back in your house, your bedroom, drive his car–feel his/her presence and be faced with your loss
• Sleep in the bed he’s/she’s no longer in
• Deal with clothes, cars and other personal items–even if you don’t start sorting and deciding what you keep, they are with you–in your house and your life
• Allow your brain and heart to assimilate that your loved one’s not here for you to call–to talk to
• Wake up and think he’s/she’s still there
• Feel alone and lost even when you’re busy
• Figure out who you are now and what to do with your time and energy
• Think about that “first” that is to come–first birthday without him, holiday without her–and make a plan
• Literally survive the best you can

For most people, the first month is a blur.

At times, you’re in bone crushing grief alternting with an odd euphoric gotta-get-out feeling.

You can bite someone’s head off or not even care if the shoes on your feet were on fire.

There’s a lot to do, and that list of wrapping things up and starting anew at least keeps your keep moving. The good news is: you probably won’t remember most of this.

Shock does a whammy on the brain. You may feel like you’ve put your skin on inside out–and your nerve endings are exploding–but later, there will be many things you can’t recall.

Your body is protecting you. Let it. J

As crazy, lost, alone, scattered, numb, and frantic as you feel in those first months, know that as hard as it is to believe, it won’t last forever.

Just breathe.

Carol D. O’Dell

Author of Mothering Mother, available on Kindle

www.caroldodell.com

Carol is a family advisor at www.Caring.com

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What’s Worse Than Being a Caregiver?

A friend of mine called me from her mother’s bedside.

Her mother was dying. In-patient hospice. It wouldn’t be long.

My heart ached. I knew her mother. I could hear the sound of her voice in my head.

She was 78 years old. Not that old, but cancer doesn’t care–young, old.

Everyone had flown on to say their good byes. The chaplin had prayed, and everyone had gathered for a hymn.

It was excruciating at this point.

“I don’t know what she’s waiting for,” my friend said.

I reassured her that our bodies and our spirits aren’t all on the same time clock–not quite in sync.

She sounded exhausted. Physically, emotionally, and spiritually exhausted.

Her mother’s cancer had been slow and hadn’t caused the fervor of everyone rallying to her bedside. My mother’s Alzheimer’s created a different scenario for my family, but there were similarities. Familiy and friends tend to avoid both of these diseases.

Her and her husband had “managed.”

I told my friend that telling your loved one it’s okay to go, that you’ll be okay, is a good thing to do.

People hang onto this life for others. Or that’s what they tell themselves.

I also told her that after we had all said goodbye to my mother that I didn’t try to wake her, try to stir her. I was quiet, soothing, and sent everyone else home. It felt cruel to say goodbye and then keep pulling at her as she was driving away.

 I had to let her go. Be quiet, Be still. Let her pass.

***

My friend called me the next day. Her mom passed away two hours later–when it was quiet.

My friend sounded like a girl who had lost her mother, and I longed to hold her in my arms.

78 is too soon.

***

What’s worse than being a caregiver?

Not getting to be a caregiver.

~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

 

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