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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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“You want to see my new girlfriend?” My friend’s husband teased his wife one day as I was visiting her in the hospital. He is her caregiver, her husband, her lover, her muse and mentor  of 40 years, and her illness had put a real strain on their relationship. 

He pulls out his wallet, takes out a picture and shows it to her. I can tell it’s a joke because he’s grinning from ear-to-ear. She breaks out in laughter despite her pain. They show me the picture.

It was a picture he had taken of his hand!

My friend was in the hospital–that time for close to three weeks. She has a chronic disease that has attacked her intestines. Her husband had sold his business and they had rearranged their life to accommodate this hostile addition to their family–illness.

Both of them had visions of their golden years–traveling in their RV, grandchildren, financial security, and lots and lots of leisure and fun. Hospitals, drugs, and pain was not what either had in mind.

To say that their sex life diminished is an understatement.

To say that sex doesn’t matter in the face of disease and pain is to not look at the whole situation. Sex does matter. It’s the one thing couples do together that they don’t “do” with anyone else. It’s a glue, a bond, a secret language, a healer of life’s wounds…to simply and biologically state it, sex is a needed release.

More magazine has an interesting article in September 09’s issue on this very subject. They state that 75% of all marriages that are dealing with chronic illness long-term end in divorce.

These aren’t shallow people. This isn’t Jon and Kate splashing their news on the headlines (not that they’re shallow, marriage is tough and I hurt for them and their children). These are quiet, hard working, family oriented people who  face surmounting, mind-boggling stress, heartbreak, financial ruin, unbelievable and unrelenting pain. And the one thing that can combat all this–their marriage and the healing powers of sex and intimacy–are taken from them.

How do couples get through caregiving and the strains it places on their marriage?

I observed my couple friends and this is what I’ve gathered.

You readjust.

You let go of what you thought life would be.

You dig deep to find your integrity.

 You find joy in the smallest of things. You find purpose as a caregiver.

You use your anger not at each other like weapons of mass destruction, but together, to get things done, to let off steam, to keep from going crazy…and you turn that anger into humor–maybe a little sick and twisted–but it keeps it from turning toxic inside you.

You do what you have to do to get by–and it’s nobody’s business. How you define sex may be different than other couples, and how and when you’re intimate may not fit the national average.

You get strong and tough and tender and real all at the same time.

I have no big answers here. It’s too complex and too gritty to give you bullet points–as if you could fire them on target and make it all instantly go away. What I have gathered from my friends and others I’ve seen going through years of what illness can do to a relationship is that the ones that make it create this circle of energy around themselves. They are one.

Couples who face caregiving challenges together have come through the fire, and on the surface, no, life didn’t turn out like they thought it would–but in many ways, it’s better. I witnessed it in my parent’s marriage.  The unity, the simplicity, the bond they have, they earned. You can see it in their eyes, they familiar gestures of thoughtfulness, the resolve in their voice. They have something profound.

~Carol O’Dell

Author, Mothering Mother

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Caregiving kicks up family igivssues. It just does. We can think we’re over them. We made amends. Asked forgiveness-forgave–and then we find ourselves back in that vortex of anger and hurt. Are we truly able to let go of a grudge?

We don’t like to admit it, but we like our addictions, and yes, a grudge (hurt) can become an addiction of sorts. We grow accustomed to, feel comfortable and safe with our dramas. Why? Because people fear the unknown. Even when the known isn’t so great.

Grudges. We all have them. Hurts from the past. Times our moms or dads weren’t there for us. Times when our siblings belittled us, took something we wanted for their own. Some wounds are profound. Some of us have been molested, raped, endured physical or verbal abuse. It’s not that we’re trying to be difficult. These are valid. They were and in many ways are knife slashes to our soul. And when it comes time to be a caregiver, these grievances resurface and can get in the way–not only of giving care, if we choose to–but get in the way of our own personal growth and healing.

5  Keys to Letting Go of a Grudge:

  1. Admit you have one.
  2. Admit you’re tired of having one.
  3. Stop negative words from coming out of your mouth–mid-word.
  4. Crowd out those hurtful thoughts. When you catch yourself mulling over the hurts of the past–crowd it out with something else–music, go-online and read some jokes, or call an upbeat friend.
  5. Give your grudge a ceremony. Create a campfire and write your hurts on paper and then burn them, or write them on rocks and place them in a rock garden, do something that signifies that you’re letting go of this hurt–and when you start to say or think about that grudge, remind yourself of that ceremony and tell yourself it’s a done deal. That’s why weddings and funerals are a part of so many cultures–they signifiy new beginnings and bitter-sweet ends.

I was watching the film, What the Bleep Do We Know,and I was reminded by one of their neuro-scientists about the power of our frontal lobes. Human beings have a highly developed frontal region, and this region is our seat of reason. We can decide, change our minds, examine, ponder, and observe–all from this vantage point. If our frontal lobes have been damaged, our ability to decide–anything–whether we’d like toast or a biscuit for breakfast is hampered, if not downright halted. 

Deciding what to do with a grudge is a choice.

Have you ever had something, thoughts that consumed you for years–that are no longer a part of your every day life? That means you’ve moved on–and if you did it once–you can do it again. Somehow, you started to choose to view that hurt (grudge) differently. It lost its “umph” as my mother used to say when a Sprite no longer held a zing.

Grudge sounds so negative–sounds like drudge or dredge. Let’s just call it a hurt we’ve been holding onto for a while. I’m not belittling what has happened to you. I have had some pretty decent size  traumas in my life, so I’m not immune to this topic. I take it very serious. It took me years, years to deal with my hurts. Did you know that sociologist’s have found that it takes about 15 years to work through the issues that come with severe traumas such as dealing with a suicide, murder or rape? That’s a lot of time, but if you’ve ever experienced any of these, you know the physical and psychological toll it took on you.

Why do some people absorb their pain, use it in some  way for the good, incorporate it into their being, and in essence, “move on” when others seem stuck in anger, regret, and seething pain for the rest of their lives?

I don’t know the answer to that.  I don’t think it’s because one person is better or stronger than the other.  I do believe it’s in part, a choice–even when they don’t realize it. I think it’s because the light bulb (understanding, revalation) hasn’t been turned on–yet. It’s part of their journey, and I love the saying, “If I’d-a known better, I’d-a done better.”

But I do know that people are capable of change–great change. Sometimes the shackles that had us so pinned down one day simply fall to the ground. 

For me, I think I wore out my anger and hurt. I got  sick and tired of being sick and tired as Oprah says. My angry, pitiful story of how I was hurt was no longer a story I wanted to tell. I started to observe that people didn’t want to be around me when I was complaining. I could taste my own toxins and I was turned off by what was rolling around in my thoughts and falling off my tongue. 

I began to want to be well. I started by controlling what came out of my mouth. Not easy. Lots of start-overs.  I wrote down my hurts, said a prayer, sometimes burned them on pieces of paper, ready every self-help book under the sun. My awareness and desire to change was at least a start.

There were times when caring for my adoptive mother (who had Alzheimer’s and Parkinson’s) was difficult. Buttons got pushed and at times, I felt right back in that quagmire of the anger and pain I thought I had dealt with years ago.  But I found that I chose not to stay there, in my complaining, nasty, negative self. I didn’t want my grudge any more. I didn’t identify with that part of my past. It wasn’t that “we,” my mother and me were completely fixed and all was magically erased–it wasn’t, and I didn’t want it to be. I could accept who we were, what we had done to ourselves and each other, and I could see that we were no longer those two same people.

If you’re reading this, then maybe you’re ready to let go of some of that back of the closet crap you thought for some reason you had to hold onto.

It’s a new day when our grudges no longer bring us comfort. A new self is emerging.

~Carol O’Dell

Author, Mothering Mother

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Don’t know if you happened to read the article on parents and marriage in June 2009’s Redbook magazine.If not, check it out–yours truly (moi) and my hubby are one of the couples that were interviewed. (Giada DeLaurentis is on the cover, but it will soon be replaced with July’s issue so hurry if you want to check it out).

The question was, “How did your parent’s marriage effect yours?”

I have two parental marriages to consider–and both had an impact on me for very different reasons. My birth parent’s marriage impacted my life because well, it fell apart and I had to be adopted. It’s a big deal when a family fails to the point of the child needing to be adopted. That means neither parent could parent the child–and neither could any of the rest of the family.

My birth mother was schizophrenic and my birth father was an addict–he was addicted to alcohol, gambling, and my mother’s trust fund. Their inability to parent me altered the course of my life.

I’m at peace with that now–after many years of not being. It’s tough to have to figure all that out–to get over the hurt, betrayal, rejection. To wonder why you weren’t wanted. I spent many years literally in a soul-knot and through much love, support, counseling, journaling, self-help and literally wearing the thing out, I came to a deep sense of trust that I am and have been exactly where I need to be–then and now.

My adoptive family was…a lot of things. I was adored. My parents were in their 50s when they adopted me. They were deeply, deeply religious and with that comes a zealousness that is both alluring and a little dangerous. I was raised old-school Southern, fundamentalist, and on top of that, my mother was a minister in the denomination and (I’ll try to put this delicately), if she got mad, she could make living inside the walls of a tornado seem like a safe place to be.

But one thing I do know. My adoptive parents loved each other. They were quite different–he was quiet, contemplative, loyal and wise. She was vivacious, unpredictable, funny, and could suck the air out of a room with her presence.

I enjoyed their banter, their ability to be such strong individuals, their affection and tenderness toward each other–and how much they respected each other. Each were like strong pillars that flanked my life. A more sensitive, less smart-mouthed, spunky child might not have been able to stand it, but I’m now ironically grateful for all that has happened to me (mostly, maybe not all).

So when it came down to caregiving, I could say I had no choice. I could say I wouldn’t have done it any other way. I could say it was easy, but that would have been a lie even I couldn’t tell with a straight face.

What I can tell you is that my parent’s devotion to me and to one another and to their faith has taught me so much–about sticking it out, going the distance, forgiveness, and sifting for the good. Even when my mother was lost in Alzheimer’s, I held on. I knew they’d hold onto me, onto each other.

Marriage for me, is now a landscape. It’s everything we’ve celebrated and everything we’ve endured–and all the quiet days that on in between.

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Sometimes I feel I’ve got to…runaway, I’ve to…runaway..from the pain that’s hurting me.

That’s a line to an old 80s song that rolled around in my head many of my caregiving days. I literally felt a panic inside: what was I thinking, moving my mom into my home. How long is she going to live? Do I have months, years…decades? She won’t leave me alone–I can’t take a bath or have a decent conversation with my husband (much less anything else). What choice do I have? She needs me, but how am I ever going to do this day after day. What about my life, my dreams?

On and on my internal monologue hounded me. Not only did I want to run away from my mother–I wanted to run away from me~!

I started collecting fantasies. How would I run away. Where would I go?

I imagined slipping out in the middle of the night. Me and the open road, guided by the moon. I’d roll the window down and howl. Free at last!

I imagined changing my name to Flo. Living in a run down house in Key West and waitressing. I’d fish for fun, check out books from the library and become a walking mystery.

I imagined inventing an adult play-pen and decorating it with things my mother loved. That way, I could exercise, cook, or take a bath without worrying–and maybe that Ronco guy would sell it on his high energy info-mercials.

I imagined strapping my mother to a wheelchair and taking her everywhere I long to go. Mom and me at the Grand Canyon. Mom and me at the Louvre. Mom and me taking art classes in Rome. Mom and me traipsing around New York City…hey, if you can’t get rid of them, bring ’em along became my motto. We’ll become like a Where’s Waldo drawing–where will the dynamic duo go next? We’d write travel books for caregivers and their buddies.

If only my life was that exciting…and if you think I’m a bit odd, then you try living 24/7 with your mother who has Alzheimer’s–and was a hand full before that ever started!

Kidding aside, when my mom first moved in with us, I did feel like I wanted to bolt out the front door. It took a while for my brain and my body to get the hang of her being in such a close proximity. I had to learn how to not let her overshadow me at every turn. I also had to learn how to let her feel needed and appreciated. Our mother-daughter dance had to learn a few new steps.

I also had to give into my run away tendencies. If I didn’t, I knew I’d really hit the road. So I started running away–to my journal. I had to snatch and grab a few minutes here and there–but having a place to put my questions and my angst kept them from boiling over.

I had to learn to run away–to the back yard. Nature calms and heals me. Especially water. Just to slip out that back door and stand at the edge of the river, watch the Spanish moss sway in the trees, and pick up a stone to hold as I said a prayer changed everything. Yeah, I’d look back at the house and my feet felt encased in lead. How could I ever make myself go back in there? But I did.

I used to hide–in the pantry, in the linen closet, on the side of the glass front door where no one could see me. I’d slump down and just give myself a few minutes–but then, they’d find me. They’d always find me. I was a sandwich generation mom–I had my mom–and my kids and husband to deal with. Somebody always wanted to know where mom was.

I’d run away by using my biting sarcasm (mostly internally), but my quippy comebacks kept us on our toes and we’d usually wind up laughing about it.

Running away is about letting off a little steam. It’s a mini-stay-cay. You can’t actually book that plane ticket to visit Bhutan, the place that Michael J. Fox’s book, Always Looking Up says is the happiest place on earth. You can buy a Chinese gong. You can visit a Bhutan website. You can buy a table runner in that gorgeous orange the monks wear.

If you feel like running away, then do it. Figure out a way to let off a little steam. Go for a bike ride, get off your bike and pick a few wildflowers. Do a virtual vacation by visiting a few websites and take notes for a future trip. Slip out the back door, find a pebble and say a prayer. Also, consider checking out respite care. Who says you can’t have a weekend off now and then? Check your community resources, ask a family member, and give yourself a break. (I know how hard this is and I can hear your but, but’s…but if you don’t you’ll burn out!)

Feeling that urge to run away is normal. Fantasizing about it lets off a little steam. Laughing about it soothes the soul. You are already a good caregiver–and admitting that once in a while you’d sure like to step out of that role if only for a few minutes, means you’re human.

Carol D. O’Dell

Author of Mothering Mother, available in hardback or on Kindle

www.caroldodell.com

Author of Mothering Mother, available in hardback or on Kindle

www.caroldodell.com

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One thing family life and caregiving has taught me is that laughing–and crying–go hand in hand.

Life is funny. Even the hard parts. Sometimes the crazier, more chaotic, more challenging times get, the easier laughter comes. Caring for a mom with Alzheimer’s had its moments of off the chart laughs and deep groans of sorrow. Why? Because it’s living on the edge.

So if you need to laugh visit YouTube and watch a short video I recorded of a caregiving presentation titled,

“If It’s Not One Thing, It’s Your Mother.” This was recorded at a Caring for the Caregiver Conference in Jacksonville, Florida sponsored by Community Hospice. The room was filled with mothers, daughters, sons, spouses, elder-care professionals–and all of them could relate in one way or another to my story.

In the video, I play both my mother’s and my part. Yes, in case you’re wondering, that’s an authentic Southern accent. It recounts a time of taking my mother to K Mart–one of the countless errands we ran together. Like life, this video encompasses the range of emotions families and caregivers go through every day–the frustration, irritation, sweetness, incessant arguing, tenderness, and you-drive-me-crazy times we face on a daily basis.

I thought, at the time that taking my mom to a zillion places, learning to be patient, learning to be firm when I needed to be and tender when she needed me to be, was more than I could manage. Stress central. In retrospect,  I’m so grateful for that bubble of time we had together. Yes, my mother was grumpy, bossy, and demanding, I was a few of those things myself–and more. But together, we made a pretty good team.

So get a drink, play this short five minute video–and I hope you smile.

~Carol O’Dell,

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

Family Advisor at Caring.com

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For many of us, caregiving a spouse is in our future. We like to not think about it, or at least imagine that it’s a long, long time from now. For many, it’s a daily reality.

According to the Family Caregiving Alliance, there is a much higher likelihood of receiving care from a spouse than from an adult child. 
Nearly one-quarter (22%) of caregivers who are themselves 65+ are caring for a spouse. Personally, I think it’s higher than that.
And it’s not all the women who are doing the caregiving. 
I know lots of men who are caring for their wives through cancer, MS, heart disease and dementia.
 These men have my full respect. The ones I’ve met are kind, thoughtful, and are trying to very hard to give their wives the best of care. I’m sure there are many who are not like this, but I do have to pay homage to the ones who are.

So why does caregiving my spouse scare the bejezus out of me and most everybody else?

 Because my husband is my strength, my rock, the person I can rail against, nag, complain about–but would never want to do without.

Even when he gets the flu, I’m a wreck. I’m projecting into the future, seeing him years from now, weak, and me trying to care for him.

He’s 9 inches taller than me and about 60 pounds heavier than me, and the few times he’s had minor surgery, I’ve seen how difficult it is.

But that’s not it.  We’d find a way to make it work.

It’s not that it’ll be hard, exhausting, or challenging. I cared for my mom through Parkinson’s and Alzheimer’s. I’m no wimp.

So just why is it so hard to care give a spouse?

I’ll just vent and you pick the one that best fits you:

(some of them don’t paint me in a good light, but I’m being a guinea pig here so that we can all identify with our less than admirable selves)

I don’t want to become his “”mother.” (By that, I mean I want to remain his wife, lover, and friend).

I don’t want to be stuck by his side 24/7–I’m very independent.

I don’t want him to be weak–for me, or him. He’ll hate that.

If you’re sick, then I have to be well? What if I get sick?

Who am I now? How do I define myself?

I don’t want him to order me around all the time–and he will. I don’t want to fight all the time.

I don’t want to cry all the time either.

I don’t want him saying “thank you” a gazillion times a day and feeling guilty.

I don’t want it to be over.

I don’t want to watch him /her  slowly die.

I don’t think I can manage our life and home without him.

I don’t want the fun times to be over–the trips, the banter, the ordinary days.

I don’t want our world to grow small, isolated, and lonely.

I don’t want our world to revolve around doctors and medicine.

I don’t want that time to come when I can’t make him smile.

****

This just starts the list. No one wants any of these things. But until we can admit them, I’m not sure we can move on.

I know that the next step is to take this list and turn it into a WANT list, find the good in whatever life throws me.

I was at a talk for Community Hospice on Saturday at the Mary Singleton Senior Center in Jacksonville, Florida and I told this crazy story about a time when my husband passed out at an amusement park. He said he was dizzy, grabbed his neck and fell stiff as a board onto the gravel road.

I was freaked. I thought he died. And you want to know that first fleeting thought?
“You…(I’ll leave out the colorful phrase), you have died–died and left me to raise three kids? Alone?

I then began to pound on his chest (not CPR, even though I was trained) and yell in his face “Help!” What? As if HE could help us? I did it over and over.

Thank goodness, he started to come to, and then I had another thought…”He’s a narcoleptic! He’s going to be conking out all the time!”

I swear, I followed him, walking three feet behind him like some antiquated Japanese woman (did they ever really do that???) for the next two years.

As if I could catch him.

***

That true, but embarrassing example is a light hearted version of what wives and husbands feel everywhere.

Deep inside we’re all screaming, “Don’t leave me here without you!”

Spousal caregiving kicks up a lot of emotions. Some sweet and sentimental, some down right  self-serving. 

The only thing I can offer is:

  • Talk, talk often. Get used to this conversation so that if something awful happens, you’ll have practiced. Kid around, make jokes, talk about the “what ifs.” Nothing is as scary as an unsaid fear.
  • Tell your loved ones how you want to be cared for. Please, for your family and spouse, sign a living will. They are so, so easy. Go to The Five Wishes and request one or print one out. Don’t make your family guess and then fight or feel guilty because they didn’t know what you wanted–or they all heard something different.
  • Have health insurance, life insurance and long term disability or care insurance. I know the economy is tough, but try to keep these, or seek a governmental equivalent (for health insurance if you qualify). Murphy (as in Murphy’s Law) likes to strike the second you’re unprotected, and caregiving is tough enough without adding the stress of finances.  

If You’re Already Caregiving:

  • Be present. Each day is precious. Even if it’s hard, chaotic, or near the end, it’s a privilege.
  • Keep your blinders on when you need to. There’s a time to think about the future, and a time when this moment, this hour, is all you can deal with. When times get rough, make your life simple, quiet, and don’t go to all those scary places. It’s not the time.
  • Never stop being a spouse. I know that caregiving is a lot of “doing.” Meds, baths, physical therapy, doctor appointments, home health aids…after a while you can forget you’re a married couple. Never ever forget that this is the person you said ” I do” with. At times we have to force ourselves to step out of “Nurse Nightingale (or Nurse Ratchett’s) position and step back into that role that no one, no one but you can fulfill. You’re his sweetheart. You’re her sweetheart.
  • Give  up being perfect. It’s exhausting and impossible. It’s the quirks, the foibles, and the fights that define us. Do the best you can. Forgive yourself when you lose your temper, forget something important, or just can’t do it all. Look yourself in the mirror each night and say out loud, “You did well today. I’m proud of you.”
  • Trust that as grueling and dark as it is, you will find the strength, you will find your way through spousal caregiving. Somehow.

***

At the end of my talk, the very sweet woman had me sign her book. She could hardly talk, she was crying so. Her husband of 54 years has Alzheimer’s. I held her and cried too. I try to give tips and I try to encourage, but I can never convey how deeply I care. Your stories touch my heart, and sometimes, all the advice in the world won’t be enough. 

Caregiving a spouse is so hard. Why? Simple. Because we love them.

~Carol O’Dell, author of Mothering Mother

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