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Posts Tagged ‘Mothering Mother’

Mike Wallace died April 7, 2012. His last few years were spent in the confusing and tangled maze of dementia. He was 93 and  was a newscaster most known for anchoring 60 Minutes and in the media for over six decades. He’s a prime example that if you live long enough, you just might get dementia or Alzheimer’s (Alzheimer’s is a type of dementia). Your odds increase exponentially with age. According to the Alzheimer’s Association your chances of developing Alzheimer’s doubles about every five years after age 65. After age 85, the risk reaches nearly 50 percent.

So our first challenge is to survive (or hopefully skip over) heart disease and cancer.

The major causes of death (in order) are: heart disease, cancer–both of these way out in the lead–lower respiratory infections, stroke, accidents, Alzheimer’s diabetes, flu and pneumonia, and self-harm (suicide).

As scary as Alzheimer’s is, heart disease and cancer take far more lives.

But Mike struggled with other demons–several years ago he shared that he struggled with depression and even attempted suicide. His honesty helped to shed light on depression, something millions face in silent shame. His life, like most of us, was a mixture of great highs and devastating lows. He was by all means a success, but he also lived through the death of his son (he had a falling accident in Greece when he was just 19), divorce and death of his wife, and several physical and mental challenges.

He was known as a fierce interviewer and was often referred to as an interrogator. He interviewed many of the world’s top and toughest leaders–and he never flinched.

I heard one of his colleagues say that he recently visited Mike and that he didn’t remember anything about 60 Minutes or what he had achieved as a broadcaster. In some ways, that’s sad, but I take it as a cautionary tale. Appreciate life now. Honor your journey. Celebrate it now. None of knows what tomorrow brings. While that sounds ominous, I don’t mean it to be, just that there aren’t any guarantees.

Life is today. What will you remember of your life? Who knows. The point is what you’re doing right now. Live it. Celebrate it.

Mike, tonight we celebrate you.

~Carol O’Dell

Author of Mothering Mother, available of Amazon 

Carol D. O’Dell’s Mothering Mother is a frank, unflinching true story of a daughter coping with the role reversal when her sick and aging mother moves in. Carol holds back nothing, offering up hilarious moments alongside the poingnant and the heartbreaking.
More than a memoir, Mothering Mother will inspire, entertain and hearten anyone facing the challenges of caregiving. Through it all she must find the time to escape and nurture her own body and soul while caring for her children, her mother, and her marriage.
Written with wit and sensitivity, Mothering Mother will help others survive–and thrive family life, including the caregiving experience. Mothering Mother was originally written from Carol’s daily journals and captures the reality of everything from driving issues, jealousy, doctor and medical care concerns,, hospice, grief, family dynamics and the joys and challenges found along the way. Mothering Mother is perfect for the sandwich generation, multi-generational households, and for those who care for loved ones and want to face each day with purpose, joy, and hope.

Resources:

http://www.cbsnews.com/8334-504803_162-57411009-10391709/a-look-back-at-some-memorable-mike-wallace-reports/?tag=cbsnewsMainColumnArea.1

http://www.google.com/hostednews/ap/article/ALeqM5jadeEUfpe-0vNVtCIM-ETbcl9o-w?docId=123741572d8e44cbb208611f8e3c6e06

http://www.alz.org/alzheimers_disease_causes_risk_factors.asp

http://www.cdc.gov/nchs/fastats/lcod.htm

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Fighting. Arguing. Not talking. Hurt Feelings. It comes with caregiving.

You can’t have a long-term relationship and this level of intimacy without a few squabbles, and even a couple of all-out wars. Yes, you’re a grown woman–and so is your mom (it might be you and your dad) –but that doesn’t stop the button pushing, back-handed comments, turn-the-knife-in-the-back digs from creeping in.

How do you get over a big fight?

I remember one fight my mom and I had after she moved in with me (we had plenty of doozies before this)–and it really hurt. I was adopted at the age of four and I’m glad I was. I made peace with that a long time ago. I’ve found my birth family and feel that I have at least most of the puzzle pieces of my life to help me figure out who I am, who I belong to–and who belongs to me. My mother is my adoptive mom and I’ve long known her good–and despicable qualities. But that day, she cut me to the bone. 

She told me that my caring for her now was the reason she adopted me in the first place. I felt used. I felt manipulated.

Yes, I knew she and Daddy loved me. We had years of love and care between us, but this felt so cold. I wasn’t mad. I was hurt–and disgusted.

After that, I could barely stand to care for her. I gave her food. I gave her meds. I changed her sheets. But I couldn’t offer not even one kind word. I spent days feeling everything from numb to explosively enraged. I journaled, walked, cried, and screamed.

Did I get over? Yeah. Somehow. I had already made a commitment and it wasn’t based on what she could say or do to me. It was based on a decision. I had to to dig way down deep to find the integrity to get me past this hurdle.

I so wanted to just walk out that door and keep walking.

Forgiveness isn’t all sweetsy. It isn’t about two people hugging and groveling and snotting all over each other. Forgiveness is a decision. It doesn’t have to be warm and fuzzy. It comes in increments. We forgive because we have to–for ourselves.

I can’t ever be expected to receive mercy for the despicable things I’ve said and done (and we’re all in the same boat here) if I can’t offer it. And I don’t know about you, but I’m trying to make lots of deposits in my mercy bank–in case I need a lot of credits in my favor.

It wasn’t easy, but routine and memory help smooth the path. Every day, I got up and prepped her meds. I changed her sheets and gowns. I fed her breakfast. My body knew what to do even when my heart rebelled. I don’t know how long it took. I just let my physical care be enough for awhile. I needed to not push myself–and I knew that it was my job to protect my heart.

Slowly, the memories of all our good times, of the other hard times we’d gotten through surfaced. I was in it for the long haul. I was there to finish the journey. Even if she didn’t love me (and I knew she did), I loved her.

I share this rather personal story because there’s someone out there in “blog-land” who is hurting. They don’t know if they can keep going. It was more than a fight. It was a rip in the fabric of their relationship.

I hope somehow, my story, my experience helps.

~Carol O’Dell

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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For many, Mother’s Day is bitter-sweet.

We try to avoid the fact that our mothers are gone or might be gone soon. We don’t like to say the word, “dead.”

 For many, Mother’s Day can be so painful that we do all we can to avoid it. That avoidance is part of grief, and it’s necessary for a while. Grief is like a good soldier, but there comes a time when you say “Thank you, you’ve served me well,” and you let that soldier be released from duty. 

After my mother died from Alzheimer’s and Parkinson’s, I felt incredibly lost. I didn’t know what to do with myself. My arms felt unhinged and just hanging on by tendrils. I had been her daughter and her caregiver for so long and had invested so much time, energy, and heart into that role that other aspects of my life had withered away.

I missed my mother, how ironic. After months, if not years of longing for my freedom, of griping and complaining, all of it felt so trivial in comparison to my mother no longer being in my life.

I knew I had to get my bearings because I could feel myself spiraling downward. Who am I? What was I doing before caregiving? Do I go back to that–or move onto something else? I’m now the matriarch of the family…does that mean I’m…old? I’m the one butted up against eternity. There’s no one to buffer me.  No one to turn to. I’m the one others turn to–and that makes me want to run.

Feeling lost lasted awhile. I stumbled around and did whatever had to be done. I zoned out a lot. Not exactly a great conversationalist at that time in my life. But tentatively, I began to move beyond my grief. I began to grow hungry for life, for a routine, for something to sink my mind into. I returned to college. Someone else telling me what to do seemed to work. I started writing again.

An Excerpt from Mothering Mother:

I put Mother’s wallet and glasses in the top drawer of my dresser today. They’ve been sitting on top of it since she died four months ago. Mother kept Daddy’s wallet, pocketknife, comb, and a small Bible in a heart-shaped cedar box he gave her the second time they went on a date in 1925.  Something about these wallets left intact creates a sort of bubble holding time and memory in perfect stillness. Their licenses, credit cards, photos and slips of paper remind me that they had everyday lives.

This makes me question this whole “here, not here” mindset we have. Giving a friend a bit of humorous advice prefaced with “as my Mama always said…” is a way of keeping her here. Will there always be a bitter side of sweet?  Will death and dying burn away, so that I don’t have to run straight into them before retrieving a remembrance?

I hear Mother all the time and quote her daily. My friend Debbie’s teenage daughter asked her mother, “Don’t you trust me?” The age-old question every parent is eventually asked, the question we all secretly know the answer to. My southern mother answered that question when I asked it two decades ago, “ Honey, I don’t trust myself in the dark.” Hearing her words echo in my head was somehow comforting.

That first Mother’s Day was like a tender bruise. I didn’t want a lot of fuss. I needed a hug and a card, and then I needed it to not be Mother’s Day anymore.

Some time that week, I had a talk with my mother. Yes, out loud in the back yard. I thanked her for being my mother. For all we had learned. For all we had gone through.

~Carol D. O’Dell

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If one emotion could sum up caregiving, it’s that you feel so alone much of the time.

It’s ironic since you’re hardly ever alone–caregiving means you have a buddy–someone to care for all hours of the day and night. And it’s not that you don’t appreciate their company because one thing I really miss now that my mom is gone is that I did have someone to be with–to pal around with–wander through the store with.

My alone-ness felt a lot like a bad case of the flu. I ached. I could barely tolerate anything or anyone. I was edgy, empty, at times ravenous, at times nauseous of my own life.

I longed to be alone. I longed to not to have a myriad of tasks to perform. I’m contradicting myself, I know, but that’s what it’s like to care give–to feel utterly alone while you’re never alone.

This is only one of the many confessions a caregiver–many we can barely admit.   

As you continue down this path, your world tends to get smaller and smaller. You’re bottlenecked–caregiving stress is very real. Your days center around meds, worry, doctors, home health aids, the medical community…but it’s not a “balanced” lifestyle. The alone-ness comes in that you don’t feel fit for “human consumption.” You can’t seem to carry on a pleasant conversation. Chit-chat is beyond you. You might not realize it, but your inability to communicate is a symptom of stress, sleep deprivation and worry.

Maybe you feel alone because your siblings or relatives aren’t helping.

Maybe you feel alone because your neighbors are avoiding you because they’re afraid you’ll ask them to do something, or that’s your assumption of why they barely wave anymore.

Maybe you feel alone because you’re angry, lost, and wondering how you got here.

Maybe you feel alone because you know your loved one doesn’t have long and you’re paralyzed at the thought of them dying.

Maybe you feel alone because you’re too tired to feel or do anything else.

It’s not that there aren’t resources–online chatrooms for caregivers (the ones at AARP and Alz.org are great).

It’s not that you can’t call up a friend (even though you suspect you complain too much and aren’t a very good friend yourself).

It’s not that you can’t go to a support group or arrange for respite care (although that sounds like a whole lot of trouble). I can give you a very long list of resources that help to some degree, but know that the angst isn’t easily absolved.

For me, a snippet of a poem, painting a wall (which might take a month to complete), going for a short walk and deadheading a few flowers were ways to assuage my loneliness. I needed something outside the caregiving experience. I needed to connected with other aspects of my life.

Art, nature, song, poetry, a line of a Pslam, a wisp of a prayer, sip of hot tea was about all I could tolerate. But it did help. I needed new thoughts. I needed direction.

I don’t know what will soothe you, but you know. Look in your past–in times of great pain or loss–and you will find your own secrets of how to get through this.

I’m a big believer that most of the answers we seek lie within. You already know what comforts you, guides you, and heals you.

~Carol O’Dell

Author, Mothering Mother:

A Daughter’s Humorous and Heartbreaking Memoir, on Amazon

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Ever found yourself (or as a caregiver for your spouse, mom or dad) sitting across from a doctor and feeling like they’re not hearing you? At all?

Most of us pine for the days when we had home town doc who delivered us, knows everything about us–and cared that we stay alive.

Not that most ever had that–but it sure sounds good, doesn’t it?

As a caregiver to my mom who had Parkinson’s, heart disease, and Alzheimer’s, trust me, I’ve spent a whole lott of time in doctor’s offices.

I did a little research on-line to find out various ways to find a good doctor, and here’s what I uncovered.

What to look for in a good doctor:

  • You can’t beat a recommendation from someone you know–a friend or co-worker.
  • Make sure they’re board certified in their field. This is crucial because it can be deceptive.
  • Visit the doctor’s office before making your appointment. Look around–is the staff fussy? Do they look miserable? Time how long it takes for a person to be seen. Ask the staff how long they’ve worked for the doctor, if they can tell you a little about him or her, or how long the doctor spends with each patient and see how you’re treated. If you hear alarm bells go off in your head, then keep looking.
  • Get a doctor you like to recommend a doctor they like (if you’re looking for a specialist or in another field) because good doctors tend to hang out (aka play golf) with other good doctors.
  • Check out some online sites that review credentials, awards and distinctions, as well as a rating system for his office and staff. Ckeck out RateMDS.com, Healthgrades.com,  ChoiceTrust.com or Vitals.com.
  • Remember you’re the client. You’re paying, and you should be treated with respect. Sorry to say, but no doctor is going to spend as much time with you as you probably would like, but they should listen to you, be competent in their assessments, and know their field of medicine well.
  • If you do feel that you need to stay with this doctor (perhaps because of location, specialty, or insurance), then here are a few helpful tactics.

How to Communicate Effectively With Your Doctor and His/Her Staff:

  • Repeat over and over: I am 100% responsible for my life. (And if you’re a caregiver, then you’re also responsible for someone else’s). Don’t leave your medical issues completely in someone else’s hands, even if those hands are attached to a physician. You should know what medications you’re on, what course of treatments you’ve agreed to–at all times.
  • Chat with the staff and get to know them. Bribe them with a tin of chocolate popcorn or stop by near a holiday with a gift card to a local restaurant or coffee p. Hey, it’s hard to resist someone who takes an interest in you, and that’s exactly what you’re doing–remember the old Golden Rule? Still applies. Ask about the picture of their kids, and use their name when you’re talking with them. This is just being considerate, but it comes in handy when you’ve got an earache and you call begging to be seen that day.
  • Start out your relationship with your doctor by shaking hands (dressed), and looking him/her in the eye. Let them know that you expect to be treated as an equal. You are–you hold a needed job in your community (or you did if you were retired), and  you are intelligent and articulate. Without being bossy or demanding, let him/her know that you’d like this to be a warm and professional relationship.
  • Go to the doctor’s office in a good mood! Be a  ray of sunshine to others around you. Be on time, don’t gripe about the little things, joke around with the staff–and watch how differently you’re treated. Take your knitting or your favorite magazine and get to know the person you’re sitting next to. Life is happening everywhere–even in doctor’s offices.
  • Write your questions down and keep them brief–but make sure you go home with answers. Also write down their answers or directions. Don’t expect their directions to make sense–put it in your own words and have a clear plan of action you can follow when you leave the doctor”s office. Don’t be intimidated with medical jargon, but also let them know that they’re not talking to a pre-schooler.
  • Do your homework–go on the Internet, check out your condition and possible drugs, treatments, symptoms, and side effects. You don’t even have to mention it since some doctors find this annoying or intimidating and a few others mght applaud you for being pro-active. Either way, it’s your health at stake so you have every right to educate yourself, but know that not all Internet medicine is accurate.
  • If you don’t feel you’re being heard, then be clear. Ask a pointed question and make sure you get an answer. You have a right to know what’s going on. Start out asking in a firm and clear manner, but don’t give up. Restate the question and ask again.
  • Don’t settle for being shoved a pill if you don’t want one. Medicine has sadly become entwined with the pharmaceutical industry and we forget that there are other alternatives and compliments to drug therapy. Let them know what kind of patient you are, and state what types of treatments you’ll consider–or won’t consider.
  • Consider holistic medicine as a complement to your main physician. Have you tried accupuncture for aiding in quitting smoking? Or for arthritis? Eastern based practices are now more mainstream than ever, and many of their benefits have been documented.
  • Write down your doctor’s names, your prescriptions and dosage and keep it in your wallet at all times. If you fall or lose conciousness, it’s imperative the the EMS workers and ER staff know this information. Don’t rely on the doctor or his chart–and realize that if you see more than one doctor and they’re not aware of the other’s medications, you could potentially have some serious drug interactions.
  • Speak up if there’s error. It happens all the time. Dosages get written down incorrectly. The doctor orders another round of chemo and you don’t want it–or you can’t take that amount–or your insurance won’t pay for a particular treatment. Don’t get upset, but do speak up–remember that 100% responsible for your own life mantra I mentioned earlier.
  • Say thank you when you leave. Shake the doctor’s hands, and even if he or his staff act rushed or inconsiderate, then make it a point to show them how to be considerate. The amazing Maya Angelou said, “We teach people how to treat us.”

My last bit of advice might sound strange, but try to not have your entire life evolve around your medical conditions.

I know that there are times when it may seem like it does–and if you have cancer or Parkinson’s, or you’re the caregiver to a loved one that has Alzheimer’s, then you probably spend a lot of time at the doctor’s office, rehabilitation, physical therapy, and in the hospital. It can be exhausting and  overwhelming, but when you can take a mental or physical break–take it. It’s not healthy to live at the doctor’s office and dwell on being sick. Honestly, it won’t make you well. Follow your regimen, take your meds, do your treatments, but keep your mind on living and learning–on your family, on leaving a legacy, on your garden, your Tai Chi, and of course,  your grandchildren.

The medical community is there to care for you. As an individual or a caregiver, you have to take the initiative and draw the best out of those around you. Be responsible for yourself, have a goal, cultivate positive attitude and a spirit of gratitude   and state clearly what you want and need. You just might get it.

~Carol D. O’Dell

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

www.mothering-mother.com

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I have to admit that I didn’t attend a caregiver support group while I was caring for my mom.

I started full time caregiving back in 1998 and honestly, I didn’t even know caregiving support groups existed, and by the time I did, Iwas feeling so overwhlmed that if I had the opportunity to dress and leave the house (and leave my mother), I had decided that it wasn’t going to be to go and talk about my mother! Yeah, I’m stubborn.

It’s not that I didn’t need a support group. I’m sure my friends were sick of my griping and whining.

But honestly, what little energy and thought I had were used to continue to parent my children. In addition to my mom’s meds, physical therapy, and every day needs, I also had to think about SAT prep, teaching my youngest how to drive, helping another study for a big test, making sure they attended a youth group–and my spare time was spent driving them or making sure they got to their activities. And that’s the way it should be–that’s what being a sandwich generation parent is all about.

But now I know now that it would have benefited me greatly to attend a workshop, conference or support group–at least a couple of times a year.

Caregiver Support Groups Help By:

  • Giving you a safe place to vent
  • To know you’re not alone
  • To find out about your community’s resources
  • To make short and long term plans
  • Helping you understand what part of the journey you’re on
  • To give you validation and permission to feel all that you’re feeling

So yes, I wholeheartedly encourage you to do a bit of Internet browsing and find out what’s available for you–almost every city and county offers something–an Alzheimer’s Association meeting, an American Heart Association gathering, stroke group meeting or a hospice based workshop.

I know you might not have fully accepted your role, your “name tag” as caregiver. That’s a big step. 

That means you’re at the top of a really big hill–and we all know where it’s headed. But I promise you’ll feel more relief in attending than you think.

Don’t Just Attend a Support Group–Also Consider:

  • Talking to someone while you’re there and even exchanging email addresses or phone numbers
  • Ask a question–chances are if you don’t know the answer, others don’t know it either–and would really appreciate your candor
  • Get info, lots of info–and follow up, make some calls or check out various groups on the web
  • Many home health organizations attend these workshops–you could find some great resources, so look around
  • Begin to take pride in your caregiver’s “badge of honor.” Get educated. Help others. Be okay that this is who you are and where you are–for now.

One last thing-

I hope you’ll step outside your comfort zone and sign up for yoga, take a computer course at the community college, get Rosetta Stone and learn a language.

I know, you’re exhausted. Overwhelmed. Too numb to live your pinky finger.

Don’t let caregiving shut your personal growth completely down. It doesn’t have to.

Carve out an hour a week for a class. Carve out 15 minutes a day to learn to knit or practice your Spanish verbs.

Learning and moving is absolutely vital to your body–and soul.

It even makes you a better caregiver.

Go on, type in caregiver support group, and the name of your city or area.

Find out what’s available.

Finding new friends and resources is a good a thing. 

~Carol D. O’Dell

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

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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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New Year’s is a time of hope. Wipe the slate clean. Begin again.

I was on a walk the other day, thinking about resolutions. Thinking about the word, resolve.

To re-solve. To solve something again–that it was once solved. So a resolution is a re-solution.

That means that once upon a time it wasn’t a problem.

That’s true.

We weren’t always overweight. We didn’t always drink too much, smoke, spend to much, or see our loved one’s too little. 

So, a resolution is just getting back to that former state.

Think back, when was it that you weren’t overweight?

Perhaps your teens? Before kids? For some of us, we have to think back even younger.

But there was probably a time. You didn’t think about food all the time. You rode your bike. Played little league.

Your body remembers this. In sports, they call this muscle memory. If your body (or mind) has ever done it once, it remembers–and can do it again.

This works for more than just weight.

So I thought about it–I used to spend copious hours on my bike as a kid. I can bike now. I used  to sing for the heck of it. I can sing in my car. I used to draw. I think I’ll go outside and draw that live oak tree in my back yard.

Sometimes we make things so big and so hard. Simple pleasures are deeply satisfying.

We buy too much, eat too much, smoke and gossip because we’re trying to fill a hole.

 We have to (at least I know I have to, I have no right to speak for anyone else) learn how to be with ourselves–and be content. 

To be content is to have content. (Sorry, I’m a word-nerd)

To have content is to have substance–something meaningful that fills up space.
I love the word contentment. To be deep in joy–to belong–to not want to be anywhere else or with anyone else.

 

According to GoalGuy.com, here are the top ten resolutions: (every site I researched had a similar list, so it’s pretty much a given)

 

Top Ten New Year Resolutions

 

                1. Lose Weight and Get in Better Physical Shape

2. Stick to a Budget

3. Debt Reduction

4. Enjoy More Quality Time with Family & Friends

5. Find My Soul Mate

6. Quit Smoking

7. Find a Better Job

8. Learn Something New

9. Volunteer and Help Others

10. Get Organized

This list tells me we’re all pretty much alike. There’s things we need to stop doing–other things we need to start. Push and Pull.

 

So, just for fun, I propose a Top Ten Caregiver’s Resolution List:

1. Sleep. Sleep more. Sleep any where, any time, any how. Dream of uninterrupted sleep.

2. Not totally blow my top at any one–a nurse, my loved one, the pharmacist…this could be tough (especially when you’re dealing with Alzheimer’s)  

3. Not eat my way into oblivion–food is not my best friend (repeat 10 times a day)

4. Remember where I’m driving–zoning out is dangerous–I may need a loud buzzer horn or taser. Stess causes zoning out, I’m sure.

5. Walk every day. Even if it’s just to the mailbox. Walking is good. Sun is good. I need this.

6. Get out and meet people. Normal people not in the health care/elder care profession. There’s a great big world out there and I need to see it once in a while.

7. To actually want sex and intimacy and do something about it. Sex drive? Is that like, four wheel drive? Yes, i remember….vaguely.

8. To get dressed in something other than a jogging suit–something NOT with an elastic waistband. This relates to not eating a whole frozen pizza and walking to the mailbox, doesn’t it?

9. Do something for me, just me. People do that? Lunch with a friend, getting my nails done, putzing through an antique shop–caring for me is actually part of caregiving…who knew?

10. Ask for help. Pray, cry, meditate, journal, scream, go to a support group, go to church, ask for respite care, pay for care for an afternoon off, try adult day care for my loved one. Ask, ask, ask–caregiving is not a lone sport. It takes a village.

Bonus–

11. Not be afraid–of caregiving, cancer, Alzheimer’s, ALS, or death.

Fear is a big woolly monster trying to gobble up your precious days. Turn around and face  it–yell big and loud–“I’m not afriad. I can do this.”

12. Attitude of gratitude. Each night before I go to sleep, I ask myself, “what was the  best part of  the day? Usually, it’s a dragonfly who stopped right in front of me–or a neighbor who gives me a big smile when she sees me. It’s the small moments that stick. Being grateful in a time in your life when so much is beyond your control is a way of turning the tables in your favor. The more you’re grateful, the more you have to be grateful for–it’s like a fan that keeps expanding.

Just like the other list–things to stop doing, other things to start. Push. Pull.

New Years is a magical time. Resolutions represent hope. Hope for change. You already know how to do this. After all, it’s just a re-solution.

 

~Carol O’Dell

Author, Mothering Mother–available on Amazon

 

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Below is an excerpt from my book, Mothering Mother. I wrote it during my caregiving years, observing that as my mother contined to age, she lost her ability to filter her thoughts or hide her fears.

It got me thinking about where I am now…and who I will become.

What concerns will linger and play and replay like a needle stuck on a record?

What judgements will slip out when I am too tired or too sick to guard them?

I’m determined to do a little “soul keeping” every day.

From Part I of Mothering Mother.

I have this theory; I’ve decided Mother is like concentrated orange juice. We all are, really. We start out potent, tart and pure—right off the tree. When we’re babies we don’t care if you like us or if we’re pleasing you. We are uncontaminated, unfiltered, and unadorned, with no knowledge of what we should or should not do. In this concentrated version, we are a wild DNA cocktail of mama and daddy, ancestors and humanity, naked and wordless.

Instincts—eating, drinking and bodily functions—drive us. We search for satisfactory ways to please ourselves. We propel toward our uncertain futures with blind self-adoration, and for those first few months, maybe a year or two, we are our life in its most concentrated form.

During the next seven or eight decades we become diluted, filled up with waterous thoughts, language, expectations, and experiences. We gain the ability to somewhat satisfy ourselves in every arena from sex to career. Our other goal is to avoid pain as much as possible. We wail at the slightest bit of emotional, spiritual or physical discomfort. We become bloated, self-aggrandized, and then, when we finally figure out how to make things go our way—most of the time—life takes its final turn, and we begin to deflate.

As our mates leave us, and our friends and family trickle into nursing homes or relatives’ homes, we realize that all we’ve built up is beginning to dissolve. We lose our water and distill, leaving concentrated versions of ourselves, only now we have memories, fears, hates and hurts thrown into the concoction.

Mother is at this final stage during which we all reduce to our own cosmic juice and revert back to some pretty potent pulp. She is no longer interested in betterment, learning or growing. She is tart, almost bitter, and that makes it hard to want to spend time with her. She doesn’t seem to have the ability or inclination to be nice. It’s all about her now, and it doesn’t matter whether I have a hangnail or a tumor; it wouldn’t register.

Whatever Mother has accumulated along the way is now strong and unpleasant to those of us who live in a watered-down world. I see the things that remain. She can recall a moment of jealousy or disappointment from forty years ago and gnaw on it for days. Most of the actual events, people, and moments she once held so tightly are now forgotten.

I now understand something: we are what we are; the only way we can add to ourselves is by experiencing something powerful enough to alter our belief system. If Mother were naturally trusting, she would continue to trust. But since fear has become so entwined, it’s now a part of her concentrated self and must play itself out to the end.

I’m Carol O’Dell.

Got a caregiving question? Email me at Caring.com/family advisor and I’ll do my best to shed some insight on your situation–and your question might help others.

 

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