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Archive for the ‘marriage’ Category

Who is an invisible caregiver?

Millions of spouses, adult children and friends who are caring for someone they love–but having to “do it on the sly.” It’s a tough transition, to admit you need care. After decades of being the strong one, the provider, the professional, the hub of the family, admitting that you need help in and out of the bed, in and out of the car, or down the stairs because of a chronic illness, disease, or after surgery can feel like a blow to the ego.  And it’s not who they are. Call is pride, but there’s a time in a person’s life when they aren’t ready to admit they need care. Their worth goes far beyond their need for help.

I met a gal last week who is caring for her husband, but it’s not a label she gives to herself. He has MS and is in a wheelchair. He’s on disability and yet he strives to see himself as he always was–a competent businessman, father, friend and spouse. He is–all those things–but he needs a little help now and then.

They married last year and their devotion and honeymoon love is obvious. They look at each other with such tenderness. She walked into this relationship eyes open. His disability isn’t what she fell in love with–it’s his charm, his wit, and his generous spirit. But his disability is something they have to work around.

She helps him dress–on difficult days. She makes sure his meds are delivered on time and she helps him sort them and reminds him occasionally (wives tend to do that–some people call it nagging but it’s all in the interpretation). She washes his hair. She works her schedule around his so she can accompany him to doctor visits so she can help manage his care. And since he’s prone to infection, she takes extra care to keep their environment germ-free–and keeps masks available for when they’re out in public during flu season.

The other night, he had a fever and decided to sleep downstairs on the couch. He just didn’t have the strength to head upstairs, change clothes and do his normal bedtime routine. She slept in the recliner next to him and checked on him several times that night–to make sure his fever didn’t spike.

Yes, technically she’s a caregiver. But her husband is a young 50 years old,  and his disease takes such a toll on his life and health that she doesn’t want to see him as needing care. He wants to be seen first as a man. That’s how she chooses to see him as well.

There are times when naming something brings a sense of relief–so that’s what it is. The definition helps define us. And then there are times, as in this gal’s case when it changes the relationship. She’d rather be an “invisible caregiver.” She’d rather consider herself his wife, his companion, his confidant.

Caring for a spouse isn’t a role. It comes with “I do.” All the invisible caregivers out there–spouses, children or friends do it out of love and loyalty. They choose to camouflage the care they give in order to keep the emphasis on the relationship–to give their loved one the dignity and respect they deserve.

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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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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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One day, my 91 year-old mother and I were running some errands together, and she says to me,

“Just think, one day it’ll just me you, me, and Phillip.” (he’s my husband)

She sounded like a five year-old who really didn’t want her parents to have other children. I imagined her feet not reaching the dashboard of the car.

“What do you mean?” I asked. I was a sandwich generation mom and still had a 14 yr. old and 17 yr. old daughters at home.

“Your children will all be grown and out of the house, and then it’ll just be the three of us,” my mom added with a tone of deep satisfaction.

I began to see my future before me…years and years of caregiving, the three of us on the couch watching movies, the three of us on our 25th, 30th, 40th anniversary trips, the three of us toodling into the sunset….I started to hyper-ventilate. I loved my mom, and I liked she was with us, but I started worrying, what had I created? My mom had turned into that bratty kid at the birthday party who wanted to run the show.

Perhaps this was a tad too much…togetherness.

“Just how long do you plan on living?” I blurted, half-teasing. (I knew that would get her rialed up)

“HEY!” She snapped back, getting the joke.

I patted her hand and we both chuckled.

“By the time your children grow up, maybe you’ll be able to keep a clean house,” Mom teased, stealing the thunder with her great come-back line.

Nice, mom, nice.

Our little verbal bantering was half in jest, half venting (for both of us), and I liked that she could still “dish it out.” Humor is a sign of intelligence. Humor means you’ve still got a few marbles rolling around up there. Later, Alzheimer’s would rob my mom of her wit, but this day lives on. I read an article about quantum mechanics and time by physicist, Paul Davies. He referred to moments of time as spokes on wheel–each moment is a spoke that lives in continuum.

My family and I tell that mom story and many, many others. We have that sort of dark humor thing going on, and if you can’t take being teased, you might be in trouble. But with the teasing comes ferocious love.

So this Mother’s Day, tell your mom stories. Laugh until you snort and tear up. Laugh and remember.

~Carol O’Dell

Need to Laugh? Looking for a Speaker for an Upcoming Event?

Check out my YouTube Presentation

Author, Mothering Mother

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This Mother’s Day, I’m acutely aware of the lessons my mother taught me. Some are from her good example, her “momisms” she passed on through wit and wisdom, and at times, she taught me best by being a living example of how to do things differently.

What Mothers Teach Their Daughters:

What it means to be a woman.

Whether our mothers neglected themselves physically or emotionally, or taught us self-love and nurturing by example, or by neglect. Everything from body image to daily habits to whether we believe we’re prone to depression can be traced back to our mothers. It’s not that they were screaming, “Believe everything I say.” It’s more the power of a whisper.

How we view men.

Whether we like it or not, our mother’s voices linger in our heads and we base subconscious decisions on the words and actions, particularly when it comes to how we view our fathers (“He’s such a moron!” or “Your father is a good, good man”). Separating our experiences from theirs can be a challenge. Just because our mothers were “unlucky at love,” doesn’t mean we will be–or vice versa.

How we view women.

Did your mother have good friendships? Did she surround herself with a circle of estrogen? Did she have a best friend–or was it all catty, gossipy, destructive relationships that subliminally taught you that women couldn’t be trusted? When you have a problem, do you have a friend to call to work through your issues–whether big or small–whether it’s whining about your cramps or getting fired? Our mothers influence how we perceive women–as friend or foe.

Our own perceptions of our ability to mother.

Deep down, we believe things about ourselves–that we’re a good driver, or not–that we’ll be able to hold our tempers and be naturally attentive, easily confident moms, or if we’ll be the nervous, flighty kind. Most of us have this quiet, ongoing dialogue running in our heads that tell us about ourselves. It takes keen observance to hear these looping taped messages, and it takes diligence to analyze them and decide what messages to keep–and what to shred.

After years of being told what to do, we rebel either inwardly or for some, outwardly. This is necessary. We need to begin to think for ourselves, act for ourselves, and the best way to do that is by getting angry, beligerent, and yell, “I don’t see it your way, Mom.” That’s our first tiny root that sprouts to form our independent lives. It takes this jet fuel of anger, rebellion, or “I’m not you, Mother,” to begin to push away from the only home we’ve ever known. To make our own homes. Our own lives.

It’s not all bad news. Our mother’s effect is powerful–and can be our ally.

For most of us, we eventually make peace with our mothers. We have to. Why? Because it’s also a way to make peace with ourselves. The sound of their voice, the cadence in their speech, their smell, their thoughts on everything from religion to nail polish give us something to ponder.

Are we like them? In some ways. But one of the greatest lessons we learn is that the friction between mothers and daughters is in many ways, a good thing. We get to decide everyday–do we agree or disagree, do accept their teachings or forge a different path.

For me, my mother taught me:

That a strong woman is to be respected, but she won’t always be liked.

She taught me that adoring your husband and thinking he’s strong and handsome makes you look good. After all, you picked him out.

She taught me that humor can redeem a difficult person. She taught me that families take care of each other.

She taught me that standing up for myself was the only way I could be around her.

She taught me that dressing for one position higher than I currently am causes people to treat you differently.

She taught me that Southern food is in my opinion, about the best cuisine on the face of the earth.

She taught me that girlfriends can really make difference when you hit a bad patch.

She taught me that saying good things about your children makes you almost believe it’s all true. 

She taught me that caregiving is full circle, and yes, it’ll just about break you, you’ll learn more about yourself than you care to ponder.

She taught me that having a good attitude is about the only thing you can control.

She taught me that love is complex and you’d be surprised what all you can forgive–but in the end–redemption is sweet. 

What did your mom teach you?

~Carol O’Dell

Author of Mothering Mother

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Is caregiving hard on a marriage? It can be. But it can also be a wake-up call.

Caregiving can be stressful on relationships. I wrote in my book, Mothering Mother that I felt like I was a giant ice cream milkshake and each of my family member had a straw–and they were all sucking on that straw trying to get more of me. At times, one would pick up the glass and tap the side, or another would dig deep with the spoon trying to get the last drop.

That’s what it felt like–that I there wasn’t enough of me to go around. Sandwich generation moms really feel this struggle. But looking back, I also see what a rich and textured time it was in my life. Being needed is a good thing. Feeling “cushioned” or sandwiched on both sides can be comforting and defining.

Did my marriage suffer? Yes, at times. My husband got the worst of me. He got the sleep deprived, always griping about something, not very romantic or considerate–me. He knew when I came to bed, I might have to get back up in 30 minutes, and maybe even 3 or 4 times that night. He knew that if my mom had a particularly rough night that he’d “pay” the next night–with a frozen pizza for dinner, or he’d pitch in, do the dishes or take the girls to an activity while I sat zombie-fied on the couch.

But we made it. We got through. He was patient. Understanding. Tolerant. I’m sure at times, I made it harder than I needed to by complaining. We create a lot of our own troubles. He’d hold me in the shower and just let me cry. My mom’s Alzheimer’s was hard–physically and emotionally. He’d wash my hair and towel dry me and I would still be crying. He’d pick my mom up when she fell out of bed or was yelling that someone broke into her room. He was firm when I needed him to be, kind when he needed to be.

Make caregiving Easier on Your Marriage:

  • Be a team. Don’t make each other the enemy. Stay on the same team. Tag team, take turns, help each other out.
  • Don’t both be down at the same time. It’s pretty natural that if your hubby has a bad day at work, you make him a cool drink, you listen, and you encourage him that tomorrow will be better. If he had a rougher day than you did, then keep your mouth shut and let him vent for a change.
  • Not trying to be patronizing to you guys, but my husband doesn’t “need” too much. If I smile when he comes through the door, ask him how his day was–and listen, give him something to eat )–anything, (or ask him to pick it up) and give him some lovin’ once in a while–he’s a happy guy. I’m glad I know how to please him. He knows what I need, too.
  • Play! Flirt! Chase each other around the house and give each other towel snaps. Turn up the radio and dance in the kitchen. You may not be able to get away–so don’t use that as an excuse. Use that sense of adventure, imagination and humor and sexiness right at home. We used to sneak kisses in the laundry room–and it made me think back to our dating days and trying to grab a kiss without  “mama” catching us.
  • Keep that love life going. Now, I know, you don’t feel like it. But sex can be like exercise. I rarely “feel” like exercising, but once I get rolling, I’m glad I did. Do it any way. Maybe you can’t muster that 100% of the time, but your spouse needs you–and face it, who else in this whole world will give you what you need if not your spouse?
  • Make time for each other–every day. I don’t care if it’s a walk to the mailbox. Hold hands and take your time. Sit together and have dinner. The wash, the dishes, the baths, the meds can all wait. Even if you have to sit in your mother’s room and eat  frozen pot pie off tv trays, being together is what counts.
  • If you lose your temper, say you’re sorry. Your nerves are bound to be raw. If you yell, snap, get sarcastic or downright mean–be quick to say sorry–and be quick to forgive.
  • If you’re at the end, and your loved one is in hospice care, then know that this won’t last forever. Your life, your routines, your family traditions will all go on hold, and this is going to be hard, but get through the best you can.
  • If you lose your way and your relationship feels stretched beyond its limits, or dry as a saltine cracker, trust that you’ll find your way back. Relationships are resilient, and caregiving doesn’t have to break it.

In the end, and caregviving does sadly end, you’ll be able to look at each other and say, “Look what we did.” Loving each other through the storms of life–the sweet times, funny times, and stressful times is really what it’s all about.

Sometimes you don’t know how good your marriage is, until it’s been tested. Is caregiving hard on your marriage? Sure. But you can stay together and even grow closer by the experience. Iit can also show you just how strong the two of you really are.

~Carol O’Dell

Family Advisor at Caring.com

Syndicated blog at OpentoHopeCaregivers.com

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I’m not much for regrets. I don’t think we as individuals, family members, or caregivers should even strive to perfect. Our faults and foibles define us and teach us. Besides, have you ever been around someone who was trying too hard? It’s exhausting and annoying. I love the Japanese concept of Wabi-Sabi–the beauty found in imperfection.

I found this definition at Nobel Harbor, written by Tadao Ando, a Japanese architect. This essay on Wabi Sabi so touched me that I thought I’d share it–it’s how I strive to live my life.

Pared down to its barest essence, wabi-sabi is the Japanese art of finding beauty in imperfection and profundity in nature, of accepting the natural cycle of growth, decay, and death. It’s simple, slow, and uncluttered-and it reveres authenticity above all. Wabi-sabi is flea markets, not warehouse stores; aged wood, not Pergo; rice paper, not glass. It celebrates cracks and crevices and all the other marks that time, weather, and loving use leave behind. It reminds us that we are all but transient beings on this planet-that our bodies as well as the material world around us are in the process of returning to the dust from which we came. Through wabi-sabi, we learn to embrace liver spots, rust, and frayed edges, and the march of time they represent.

But I do wish I had known back then what I know now.

In regard to caring for my mother, I tell myself I was busy. There was never enough of “me” to go around. I had to eek out my time and love in tiny drops just to give everybody a piece. That was true, and asking a caregiver to stop spinning in a maddening circle is asking them to do the impossible.

The  busy-ness (observation–busy-nessand business is not necessarily the same), franticness, never stop breakneck speed is a protective stance.

I had a the privilege of being a real part of my mother’s life the last 15 years she was on earth. Daddy had died, and I was her closest relative. Although I’m adopted, that doesn’t change anything in terms of family dynamics–they were my parents, and I was their daughter. If anything, adoption added a little extra cement to our bond. 

I spent hours and hours with my mother–driving her to doctor appointments, to the grocery store, and to the million errands she could concoct just to get out of the house. And in the end, my mother lived with my family and me–she became a part of the O’Dell household complete with two dogs, two cats, three teenagers, my husband and myself. Most of the time she didn’t think about being a part of anything–by then, life, she believed, evolved around her. It was my job to incorporate her, create balance to my home, and not let anyone yell “fire” and hog all the time and attention away from the delicate harmony of our home.

So there I was, always on the go. Always avoiding. Always, even when sitting perfectly still on the outside, whizzing around in my soul like a gyro-top. It was fueled by panic, fear, sorrow, loss, and the underlying thought, “I can’t do this–be responsible for my mother’s life, for my children–I can’t do all this.”

But now I know.

What’s more important than making every doctor’s appointment, than reading about Alzheimer’s, then cutting pill after pill, then the calls to Medicare and home health aides was this:

What my mother (and my husband, children, and friends) needed from me more than anything–was a good conversation.

There isn’t anything in the world as loving and respectful as someone who will sit with you, look you in the eye, listen to what you have to say–and contribute to the conversation. The easy banter of thoughts, hopes, fears, and chit-chat of life is deeply satisfying.

My mother didn’t move into my home just to have a list of needs met every day. Anyone could do that. On some level she was hoping we’d have a few minutes–to simply be. Not to agree with one another, not to be little clones spouting off the same agendas, but to sit as bookends, side-by-side observing life.

That’s what my mother needed. What I needed. I couldn’t do much to speed up or postpone death. We can’t change much about life in the big scheme of things–but what is within our capabilities is how we interact with one another. We can choose to create a time and space for real connection to happen. It can’t be forced or cajoled.

Having one genuine moment of understanding–a said or unsaid conversation is rare and most precious.

I remember a conversation my mother and I had when I was about eleven years old. We were in the car outside of church waiting for Daddy to get out of an elder meeting. Something big was going down–there were rumors that our pastor had had an affair. Even the kids knew about it. I was just old enough to know what that meant–and young enough to think that life was black–or white–nothing in between.

I was in the back seat, mother was in the front, filing her nails, as usual. We both stopped what we were doing and looked at the church.

“Why doesn’t his wife just leave him and the church just fire him.” I said, angry that this pastor I had looked up to had betrayed me as well.

“It’s not that easy, honey.”

That’s all Mother said. I laid my head on the ledge of the front seat, and she continued to look at the building in front of us, at the steeple that strained into a blue sky.

I learned a lot that day–by all that she didn’t say.

We’d have many conversations over the next almost 40 years. Many times we’d talk at each other, alienate each other, blast each other–but every once in a while, there would be that cord that stretched from her to me and back to her again.

I’ll spend the next few posts exploring what makes a good conversation, how to talk to someone we love–someone who is ill or aged, or someone we have issues with–thorns that make us wince at the thought of a meaningful conversation. I’ll write about how to talk–or be with someone you love who no longer can speak, or comprehend who you are.

There are lots of great sites on the Internet about families, caregiving, Alzheimer’s, elder-careparentsand children–but nothing is more important than quieting your thoughts, unwinding the pent-up soul, and taking a few moments to sit quietly–and talk.

~Carol O’Dell

I hope you’ll check out my book, Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir–on sale at Amazon, other online e-tailers, and in most bookstores.

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