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Archive for the ‘end of life’ Category

“When will I feel like me again?”

Sometimes I get asked this question by someone whose care partner has recently died and they’re reeling from grief while trying to figure out a new direction for their life. Other times it’s in the midst of the valley of care–when there’s no end in sight.

I see their desperate eyes and I wish that I could give them a simple, “soon,” but the truth is, none of us can go back, not even a moment or day, to who we were, to what life was.

I experienced this as well. I left one life–a busy mom/director of a school, a writer with publishing dreams, and then within a matter of months I was my mother’s daughter, caregiver, driver, health advocate, cook and could barely leave her side without being called back. I used to say I’m the dog in the front yard–the one with a choke collar on a very short chain. I chose to care for her, but I had no idea where it would take me. In time, I lost and found more of me. I had to figure out how to compartmentalize the many facets of identity.

Caregiving changes you. It has to. It’s too all-encompassing not to. Some of those changes make you a better person. Sometimes you don’t think you passed “the test.” You see how ugly, selfish, degrading, bullying, manipulative, resentful, and angry you are. And most of the time you don’t even know what triggered it. It gives you a chance to take a long hard look at who you are, but most of the time you’re too exhausted and frustrated to feel like you can do much about it. Every day exploded with doctor appointments, prescriptions to pick up, sheets to wash and calls to make.

Besides, I don’t think we have to be aware of change in order to change. Life teaches us, like it or not, willing or not. Being exposed to pain and suffering (for most of us) teaches us compassion. Being exposed to the dying process allows us to contemplate life and purpose. It doesn’t have to be profound, understanding weaves its way into our ordinary days, and I have to believe that in that small moment where we slip past our vices, when we extend kindness, humor, and tenderness–in spite of our own issues and our own needs–and we touch, truly touch another–that is the gift.

In  Finding Your Own North Star, author and life coach Martha Beck reminds us that many cultures value the times in our lives when we lose one identity and have yet to pick up another. Indians go on spirit walks. They leave their tribe and wander without knowing if they will ever make it back, and in that no man’s land, they encounter something magical. Those who return are barely recognizable. Only remnants of their former selves remain. Cleansed by a holy fire, this human metamorphosis is part of our journey and especially true for caregivers.

I guess the only way to get there is to be stripped of identity and to learn to somehow be okay with not knowing who we are or where we are. To be willing to strike out, nameless, faceless, and to give our all and have no idea of who we’ll be when it’s over and trust that whatever lessons needed to be learned were learned, and if not, they’ll come around again.

Let the riptide take you and see what shore you wash up on.

Faith is what makes life bearable, with all its tragedies and ambiguities and sudden, startling joys.
Madeleine L’Engle 

Sources:

http://www.oprah.com/spirit/Strategies-to-Deal-With-Every-Phase-of-Major-Life-Changes

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Being a full-time caregiver for several years and going the “last mile”has taught me a thing or two. I allowed (not just physically, but emotionally and spiritually) my mom to pass in our home and that has changed me. At the time, when I was in the thick of caregiving 24/7 and having to get up and play “prison guard” to my mom who had Parkinson’s (thank God because it slowed her down) and Alzheimer’s (which revved her up) and heart disease (just to throw another kink in the game plan), I spent most nights hitting my bed only occasionally as if it were a trampoline. In those grueling, full of worry, can’t make it better no matter what I do, nights and days I wondered at times if I would survive. I did, and I’m profoundly grateful for this life-changing, push me to the bitter edge experience. This gal learned a thing or two.

  • I learned not to be afraid of disease. Parkinson’s and Alzheimer’s I’ve seen what they can dish out, and it’s not pretty. They’re bad, don’t get me wrong, but I know the terrain and I find we’re most afraid of the unknown. I hope to figure out how to deal with whatever grenades life throws me.
  • I want to grab life with gusto. No guarantees in this world. So spend your money, take the trips, laugh with friends. Love big and hard and take risks–the good kind. Do it now. Arbor day, Chinese New Year’s–life’s for celebrating in big and little ways.
  • Stand up for myself–and for those I love. Caregiving comes with a zilliion big and little decisions. It’s easy to be bullied by the medical community, by other family members, by the “shoulds” in your head. I learned to stand up and stand behind my own decisions. It’s easier to blame others, and it takes a big girl (or a big guy) to have the guts to stick to my own convictions.
  • Love what is.Pain comes from the fight to make things a certain way, when we can’t let go of what was and walk across the bridge to what is. I thought my mom was back in my life in such a big way so we could “fix’ our relationship–work through our hurts and misplaced expectations. Wrong. I learned to love her, to love me, to love us–as is.
  • Laugh–or scream–but do something to release those runaway rollercoaster emotions. It’s time to stop holding it all in. Sorrow, guilt, frustration, resentment–it’s all there for a reason. They’re clues to help us know what’s going on in our heads and our hearts. But they’re toxic if they’re stuffed down and not allowed to breathe.
  • Do something I’m proud of. It’s time to leave the world a better place than I found it. I want to be known for something. For making a difference. I want some small sliver of the world changed for the better–because of me. I’ll let you know what sliver grabs my heartstrings next.
  • To stop caring what others think. Get a nose piercing, cut my hair down to the nubs, paint my front door purple and my mailbox lime green, dance under the stars, speak up and speak out when I see an injustice–that’s how I want to live now. That’s how I want to be remembered. Conformity sucks. In the words of Nelson Mandela (I believe he quoted it from Marianne Williamson), “Why are you trying to fit in–when you born to stand out?”
  • Nature heals. Nothing brought me more comfort than the sparkle of light on water, a bird’s wings whirring overhead, a breeze lifting my hair and reminding me to stop for a moment and take it all in. When sorrow slams into my chest I hope to remember to fall into the earth and ask it to take from me what I cannot bear alone.
  • To tell our stories. I wrote every day I cared for my mom. I wrote to stay alive. I wrote to figure out life. I wrote to remember our journey. Those journals became my book, Mothering Mother, but I wasn’t writing to get a book deal. I was writing to capture moments, to pick them up like a prism and look at each facet.
  • When death comes, I hope to dance my way to the next realm, not fight it. I hope I’ll have a bit of a heads up and let go of this world with a dash of grace. I hope I’ll take Chief  Sitting Bull’s words and shout to the universe, “It’s a good day to die!”

That’s what I’ve learned. Oh, I can still be shallow, petty, and mean-spirited at times. I still lose my way–but not for long. Caregiving has changed me. For the better.

~Carol O’Dell

Author of Mothering Mother, available on Kindle

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Caregiving my mom carried many ironic gifts. One is that I witness how love goes on–after death. My parent’s marriage lasted for 52 years. They faced the Great Depression, World War II (Daddy served for four years–in France, at the Battle of the Bulge, and then stayed to help rebuild the country), a miscarriage, an inability to have natural children, a two career household when that was quite unusual, and later–one illness after another, including daddy’s final battle with heart disease. What I realize now, looking back on this vast relationship landscape, was that love goes on. As a daughter and caregiver, I am profoundly grateful to have witnessed this.

My mother was a widow for 18 years. She would have never wanted that. She had no desire to marry again. Daddy was the love of her life–and vice versa. I was adopted when they were 54 and 58 years old. Established. They argued (petty but quite verbal) all the time.Both of them retired by the time I was in second grade, so they spent a lot of time together and with me.  They only have maybe two tiffs that seemed rather big the whole time I knew them. They were as polar opposite as can be. He was quiet, a bit melancholy. Deep. Thoughtful. She was loud, vivacious, and her moods were shall we say…unpredictable. And yet, they worked it out.

More than that, they adored each other. They complimented each other constantly.  They respected each other, bragged about each other, doted on each other. And yet, they were completely normal. She talked too much and that drove Daddy nuts. She micro managed his entire life down to picking out his daily underwear. Daddy was slow. Wouldn’t do anything he didn’t want to do. Stoic. Refused to follow the doctor’s orders. That infuriated my pull-pushing, dot every i, OCD mother. He escaped each day down to his chateau–the garage he built with his own hands. That’s what marriage is like.

Daddy did all he could to look out for my mother. He left her a home, a generous savings, health and life insurance. More than that, (which all of that became less valuable over time–almost 20 years has a way of gobbling up money and goods) he left us all a legacy.

I’m grateful that my mother, who fought Parkinson’s and at the end, Alzheimer’s/dementia didn’t forget her husband–not until maybe the last year. We talked of him every day. We kept his pictures out. We shared stories. And as you can probably tell, I adored him, too. With all of my being.

And now, both my parents are gone. Time has taken them. That’s what time does. And yet, they remain. Their marriage endures. They are my example. I am profoundly blessed to have been adopted by such a union–and I say this in full light of my less than idyllic childhood (I did mention that my mother was unpredictable and for anyone who has read Mothering Mother, they’ll also note that she wasn’t exactly easy to care for either!)

Still, love is what endures. Spending the last years with my mother and caregiving for her daily needs gave me the opportunity to witness love in action. Their marriage carried over, like the scent of gardenia on a southern night. The sweetness remains.

~Carol D. O’Dell

Author of Mothering Mother, available on Kindle

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

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

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

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

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

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

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

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

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

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

Surround you and your loved one with support and ease.

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

Let go of expectations.

Let go of everything and everybody who causes you stress.

Pull in. Get Quiet.

Find your place of peace.

Make your own Christmas. Don’t wait.

~Carol D. O’Dell

Author of Mothering Mother, available on Kindle

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What’s the best part about caregiving? Getting to spend lots of time with your loved one.

What’s the worst part about caregiving? Getting to spend LOTS of time with your loved one…okay, it’s a bit of joke, and it’s not.

Every person I speak with who has lost a loved one tragically/quickly wishes they had more time. Yes, they realize they are spared the day-to-day worry and exhaustion. They realize their loved one was spared the pain/loss of memory, slow death…but still, they wish they had more time.

Others, like my friend Pam has a front-row seat to a long passing. Her Dad is 98, has bladder cancer, has dementia, and has been living with her for the last 15 years and has been in hospice the last two years. He’s on the slow boat, she says, smiling and exhausted . Her days are spent with hospice care nurses coming in and out of her home. Adult diaper boxes and bed pads are lined against her kitchen wall. Medications line her kitchen counter. She’s 55 and feels like much of her own life has passed by in this decade plus of care.

She reminds me of Diane Keaton in the movie, Marvin’s Room says, “Oh Dad’s fine. He’s dying, but he’s taking his time–doesn’t want me to miss a thing.”

“It’s also been rewarding. We’ve had time to get to know one another, you know?”

There’s a depth to her words. She earned them. She earned what she knows and doesn’t know–about her dad and herself.

The best part of caregiving isn’t a rah-rah cheerleading session kind of peptalk. It’s the quiet hours. It’s the confidence you gain from being tested. It’s what you’ve learned about life and death, relationships, forgiveness, and really knowing what it means to let go.

The best part of caregiving isn’t one thing or another. It’s all you’ve learned that no one can take from you.

~Carol D. O’Dell

Author of Mothering Mother, available on Kindle

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There came a time when I knew my mother was dying. It wasn’t necessarily a physical symptom, it was a gut feeling. I was scared–even frantic. How do I do this? If you’re a caregiver it’s likely that you will eventually face the last turn in road. Your loved one will entering the dying process and as death draws near you may call or be recommended for hospice.

I felt sad, cornered, overwhelmed, grieving, angry, panicked, even numb, and if I’m really honest–almost relieved. I was not only losing my mother, I was losing a part of me.

How do you know when the end is near?

Do you wait for a doctor or nurse to tell you?

Do you check into the hospital?

Who do you call–what do you next?

All I know is that I had been caring for my mother for a number of years. I was the one who fixed her meals, bathed, her, listened to each breath, monitored everything from her moods to her medicine.

When no one else knew–I knew.

I asked the doctor if we were ready for hospice. He hedged. A few weeks later, I insisted.

Hospice came in and although my mother qualified they didn’t think that death was imminent. Still, something in me knew it wouldn’t be too much longer.

Mother rallied–I felt duped–then she plunged again. In less than six weeks from the time I made that call my mother took that last turn. For three weeks or so, she lingered. She forgot how to eat–and I let her. By that I mean that I chose not to insert a feeding tube. That’s a highly personal family decision, but it was the right one for us. It wasn’t an easy decision by no means–and I knew I’d be the one to witness every breath, every moment. And I took on that role willingly.

I received one of the greatest gifts of my life in those quiet, grueling weeks. My mother taught me how to die. She gave me front row seat–something not many of us in our modern society gets the privilege of witnessing. But I ask, how else will we learn?

How do you know when the end is near?

It’s instinctual, guttural, spiritual, biological–but you’re also subconsciously weighing every piece of information you’ve gathered–as spouse, daughter, son, or friend. You’ve been there all along and even if you’re not medical, you know when a shift has occurred. You’re picking up on cues you’re not even aware of.

Trust that you may know before anyone else knows–and you might not be able to explain why.

In the end I was fully present. Scary–yes. But the frantic fear was gone. It was tough beyond words, but it was also good–necessary–and for me, holy.

Few of us have another way out of caregiving, especially for our elders. We all must die.

Knowing the end is near is a rare gift–one I’m profoundly grateful for.

Carol D. O’Dell

Author of Mothering Mother, available on Kindle

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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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