Are You the Black Sheep Sibling? The Unlikely Caregiver?

Life is funny. Sometimes the most rebellious of us, the teen gone bad, the unwed mother of three, the Harley brother in leather and bandanas  and lots of tattoos who become the best caregiver, the most thoughtful son–or daughter.

Why? Sometimes those who travel counter to society have the most tender souls. Sometimes the battle with their personal demons have made them even more thoughtful, more real and more alive. They may wrap the package in a prickly covering, but that doesn’t mean there’s not a teddy bear underneath.

Our lives are like boomerangs. For some of us, we fling ourselves as long and as hard as we can from our families–and our trajectory runs its course. We go to the bitter edge, turn, and with the same intensity we find our way back home again.

That doesn’t mean that if you’re the black sheep that you have to cut your hair, cover your tats, and clean up your language in order to be a good caregiver. Be yourself! What a refreshing idea. What you have to give to your loved one–your life experience, your way of looking at the world–is unique and of value.

And if you don’t already know it, black sheep have incredible charisma. It’s your charm, your edginess, your dangerous elements that make you such a great care person.

I do think that most of us get more forgiving as we age. We get tired of being angry at everybody and everything. We get tired of our own spiel. We realize we don’t know everything and all that we’ve been hiding and running from was ironically trying to teach us a thing or two. If your family didn’t used to accept you, it doesn’t mean they still won’t. And if your mom or dad or sister or brother need you, and you need them–be willing to knock on the door. 

Alzheimer’s and other diseases that ravage our bodies are great levelers. When it hits and your loved one needs help, it won’t matter if you’re wearing cowboy boots or Birkenstocks. Don’t let others keep you away. Don’t let your past keep you away. You deserve to be there. They deserve to have you there in those final years, months, and hours.

So what if you don’t look like, talk like or think like the other sons and daughters in the waiting room. Maybe that’s a good thing.  Some of the kindest, most attentive, most present caregivers I know come in the most unlikely of packages.

~Carol O’Dell

Author of Mothering Mother

How to Talk To Your Doctor: Getting What You Want and Need, for Caregivers and Families

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 lot of time in the doctor’s offices. I’ve gone round and round trying to get them to understand not only what my mom needed, but what I could handle.

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:

Communication Tips for Working Effectively With Your Doctor and 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 coupon to a local restaurant or coffee shop. Hey, it’s hard to resist someone who takes an interest in you, and that’s exactly what you’re doing for them. 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’re an equal. You hold a job in your community (or you did if you were retired), and that you are intelligent and articulate. Without being bossy or demanding, let him/her know that you are expecting to be treated in a warm and professional manner.
• Go to the doctor’s office in a good mood! Be a 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 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.
• Do your homework–go on the Internet, check out your condition and possible drugs, treatments, symptoms, and side effects. While some doctors find this annoying or intimidating, others (most) will be less likely to treat you like a two-year old. Don’t act like a know-it-all, but do be informed.
• 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.
•  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.
• Balance your caregiving responsibilities with the rest of your life. As hard as it is, we can’t center our life around one person–as a mother, daughter, wife, and woman I had to constantly weigh what was best with everyone. Some medical advice would keep you in a perpetual state of hospitals, doctor visits, and medical care and leave you no time for anything else. As difficult as it is to face, sometimes you have to say no.
• Write down your prescriptions and dosage and keep it in your wallet at all times. 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. .”

My last bit of advice: 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.”

Caregivers have the added responsibility for being the health advocate for others. Take the initiative and draw the best out of those around you. Be responsible for yourself and those you care for. Have a goal, cultivate positive attitude and a spirit of gratitude. Generally, we get what we ask for, so be sure to state clearly what you want and need from the medical community.

~Carol D. O’Dell

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

Caregivers and Happiness: An Oxymoron?

Do caregivers struggle with the concept of happiness? 

People are about as happy as they make up their minds to be. ~Abraham Lincoln.

I find it pretty amazing that this quote is attributed to Abraham Lincoln.

He didn’t exactly have a cushy life.

According to today’s standards of what qualifies as a “good life,” Abraham Lincoln’s journey would not be considered an easy one–then or now.

And yet, we all owe him a great debt. He held America together and changed the course of  history. His words and example still inspire us today.

Happiness is a lot about choice. It’s a state of mind and way of looking at things. It doesn’t change the facts. If your mom has Alzheimer’s, if your dad fell and broke his hip, that’s a fact–but how you deal with it–that’s up to you.

Abraham Lincoln’s mother died when he was nine, and although his family could barely survive, young Lincoln gave up hunting after watching a turkey suffer after he shot the bird.

He didn’t just become president over night–he was a lawyer, then tried for congress (twice) but was defeated by Stephen Douglas–over the issue of abolition.

He married Mary Todd, and three of their four children would die before adulthood. This left Mary, who already suffered with depression, even more mentally unstable. As Abraham Lincoln’s life began to evolve more and more around politics, his marriage suffered.

President Lincoln was under great stress to try to hold our country together in perhaps its most challenging time. He did so, but with great personal sacrifice. He was assasinated when he as only 56 years old.

He doesn’t exactly seem like a person who would focus much on the meaning of happiness–but who better than someone who knew, but did not give into sadness/

There were many times in Mr. Lincoln’s  life when I’m sure he had to choose to simply go on, breathe in and out, and keep on doing the task at hand.  Sometimes happy isn’t about being happy, but choosing not to give in to the cares of life.  Caregivers know this well.

Happy is an unusual word. According to the Princeton online dictionary, happiness  means:

• state of well-being characterized by emotions ranging from contentment to intense joy
• emotions experienced when in a state of well-being

Where did the word  “happy” come from?

It dates back to 1340, from the waord, “hap,” which was connected to chance or fortune.

(From  Etymology.com)
1340, “lucky,” from hap “chance, fortune” (see haphazard), sense of “very glad” first recorded c.1390. Ousted O.E. eadig (from ead “wealth, riches”) and gesælig, which has become silly. O.E. bliðe “happy” survives as blithe. From Gk. to Ir., a great majority of the European words for “happy” at first meant “lucky.” An exception is Welsh, where the word used first meant “wise.” Used in World War II and after as a suffix (e.g. bomb-happy, flak-happy) expressing “dazed or frazzled from stress.” Happiness is first recorded 1530. Happy hour“early evening period of discount drinks and free hors-d’oeuvres at a bar” is first recorded 1961. Happy-go-lucky is from 1672. Happy as a clam (1636) was originally happy as a clam in the mud at high tide, when it can’t be dug up and eaten.

So, I gather that happiness has a lot to do with choice–and chance. “Hap,” or chance, or luck has a lot to do with life. It’s the opposiite of…control.  Control is when we put conditions on our happiness. We can’t be happy if…dad can’t walk or mom dies. Can we really exact those kinds of conditions in order to ensure/insure our happiness?

Much of caregiving doesn’t fall under the category of “happy.” While parts might be necessary, needed, serve a purpose, and at times, appreciated–as a caregiver  I found that I had to fight or choose to be happy. Let me tell you, I know how it feels to push that rock up hill. There were some days when a Volkswagen Bug full of 50 clowns wouldn’t have gotten my mother to crack a smile!

I had to look for the good, the funny, the crazy and ironic. I had to let go, give up, give in, and simply trust. So much was so way beyond anything I could have prepared for that it was in away, left up to luck, to chance–to hope. And maybe that’s where the happy part comes in. When you can’t control it, you might as well choose to see the good, any good that comes your way.

The smallest of good/happy could make my day–a cardinal dipping past my window–I love how they fly–dip, dip, dip–their bright wings in defiance of a winter morning.

Happy for no reason. Right now, with all the economic challenges we face individually and collectively, I feel like I don’t have a choice–either crawl in the bed and pull up the covers (indefinitely), or keep an eye out for bright red birds and all the amazing small wonders that surround us.

Bottom line, if Abe Lincoln can choose to be happy, then so can I.

Other great quotes by Lincoln.

~Carol O’Dell

Mothering Mother: A Daughter’s  Humorous and Heartbreaking Memoir

Family Advisor at Caring.com

Caregivers: There’s Nothing More Important Than a Good Conversation

I love the Japanese concept of Wabi-Sabi–the beauty found in imperfection. There’s nothing more imperfect than family life. The fusses, fights, secrets, and misunderstandings add texture to your life–and salt to your stories.

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-ness and business is not necessarily the same), frantic-ness, 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 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.

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.

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.

There are lots of great sites on the Internet about families, caregiving, Alzheimer’s, elder-care, parents and 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.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.

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.~Carol O’Dell

Who Says Halloween’s Just For Kids? Easy Tips for Caregivers and Their Loved Ones to Enjoy the Fall Festivities

Caregivers: You Don’t Have to Like Your Mother to Love Her

Newsflash: You don’t have to like your mother to love her.

This, for some of us is a relief. We feel like bad sons or bad daughters if every thing’s not warm and fuzzy, but caregiving isn’t about your emotional barometer reading for the day.

It’s no coincidence that we start out tethered to our mothers. The umbilical cord is the first of many. It sustains us, feeds us, is a highway of blood. It’s tough too. I remember my husband cut our daughter’s umbilical cords and he said he really had to work at it.

And after all our mother-daughter ups and downs, we eventually find ourselves back together. Our moms need us–and we need them, even though we don’t know it or admit it. Caregiving comes along and gives us another chance to work at this ancient relationship. 

I have a friend I’ll call Jess, and she’s in her mid-thirties, and like most women that age, she’s already racked up a couple of decades of mother-daughter angst. It starts early for us girls. 

Jess shared with me that her mother recently asked, “Why were you always so angry with me?”

Now, that’s an age-old question…why are we?

Is it because of hormones? I’m sure.

Is it years of not being able to speak our minds? Absolutely.

Is it that our moms control our lives and even at a young age we want to yank the reigns and drive our own demons? Sure, but it’s even more than that. It’s biological, and it’s necessary–at least for some of us. I do know a few people who have always been sweetsy and close to their moms–and I mean always. I think they’re from another planet…

I finally got to a place of acceptance, but it took awhile.

But with Jess, I’ve noticed how things have begun to change. Jess is engaged. Jess is truly grown now, on her own financially and emotionally–and I think she, and her mom now recognize this fact.

Jess talks about her mom differently now. There’s no animosity. It’s simply gone as if somone had unhandcuffed her. Jess’s mother is flying in for her wedding shower and they’re going shopping all day at the outlet mall while she’s in town. She calls her mom several times a week as she’s driving home from work–just to chat. This wouldn’t have happened even three years ago. Her mom hasn’t changed. She still says certain annoying things any daughter would cringe at, but Jess no longer lets it get to her.

Why the change?

The mother-daughter bond is resilient.

It’s not a warm, cuddly blanket, but a sinuous cord that connects us and keeps our relationship alive through the turbulent years. At times, our anger is the jet fuel we need to grow up and move on with our lives. We “use” our mothers.

We hate them in order to love ourselves. We swear we will never be anything like them. We despise them when we don’t want to admit we despise ourselves. We lash out in words and actions knowing it cuts like a serrated knife. We think it will always be like this–us, way over here–them, way over there.

The resiliency of the mother-daughter relationship that grows stronger over time isn’t a surprise. Pennsylvania State University conducted a study of midlife daughters and their elderly mothers. Researcher Karen Fingerman, Ph.D., found that “despite conflicts and complicated emotions, the mother-daughter bond is so strong that 80 percent to 90 percent of women at midlife report good relationships with their mothers—though they wish it were better.”

After all those years of bickering, name calling, not calling at all, we find out that underneath all that bravado, there’s love. And…we actually want a better relationship with our mother! I never throught that day would come for me, but it did.

Suddenly, through birthing a daughter, a woman finds herself face to face not only with an infant, a little girl, a woman-to-be, but also with her own unresolved conflicts from the past and her hopes and dreams for the future…. As though experiencing an earthquake, mothers of daughters may find their lives shifted, their deep feelings unearthed, the balance struck in all relationships once again off kilter.

~Elizabeth Debold and Idelisse Malave

We are defined by our mothers and find our identities, in part, in them and their life-lessons. 

We push off of our mothers like they’re a springboard–the laws of physics at work in relationships. Our “you weren’t there for me’s,” and “why are you always so controlling” finally leave our systems and we get sick of our own whining. The longer we live, we see our mother’s strengths unfold. We view past events in a new light. We turn to them for guidance, even if it’s a “don’t do what I did.”

I love the mother-daughter relationship portrayed in the movie, Spanglish. Tea Leoni and Cloris Leachman are the daughter and mother, and both are a mess–but they’re together–through it all. There’s a scene in the movie when Tea is about to leave to go see her lover (she’s married) and her mother knows what she’s doing–and she tries to stop her. She’s standing by her car pleading with her–and I don’t remember the words–I don’t want to, but what I do remember is her actions. She finishes her sentence and with both hands on the window ledge, she slaps the ledge. Like, I’m done, I’ve said my peace. I know that gesture. I know that feeling of my mother speaking into my own life–having her say.

Our mothers can tell us things no one else can.

Were they bad mothers? Perhaps. At times. But that doesn’t diminish their power or our need to have them in our lives. Even if for a few, our mothers are object lessons, they are still in our lives for a purpose.

Eventually, most of us learn to make at least a measure of peace with mothers–and mothers with their daughters. It’s not a conscience thing. It just is. It’s biological.

Mothers and daughters can fight, argue, cry, blame, and complain–and their bond gets stronger. You don’t even know it’s happening–you think you’re a million miles away. We can even ignore our mothers and go on with our busy adult lives, and that bond is still there. Genetics is one powerful pull.

I’ve seen it countless times–family members who have been hurt find a way to forgive. Daughters who are disgusted with their mother’s choices begin to understand why, and through their own poor choices, they offer a morsel of mercy.

Mothers who seemed hard, controlling, and fussy finally become real people to their daughters. Their daughters begin to realize the that their mothers have lives, dreams, and quiet heartbreaks no one knows about. Mothers loosen up over time and become somone their daughter confides in.

Again, why?

You can’t make peace with yourself, with who you are, with all that you’ve done that had made you ‘you,” until you can begin to accept your mother, your past. She is your key.

What the daughter does, the mother did.  ~Jewish Proverb

Our mothers, our daughters define us. We are who we are because of them–good or bad. We look into their faces and we see ourselves–past and future.

Caregiving comes at just the right time. We don’t think it is. We’re busy. We’re moms, and just got our act together. We don’t want to deal with death and dying, with power struggles and forgiveness. But oh, we do and we just don’t know it. Begrudgingly (sometimes) we lay down our grievances and come toether–again. 

Caregiving gives us a reason to make up, to let go, to “get over it.”

Whether our relationship is strained or easy, hostile or amiable, we need our mother if only in memory …
to conjugate our history, validate our femaleness and guide our way.

~Victoria Secunda

Something happens when our mothers lives begin to grow smaller either physically, emotionally, or financially–a power shift occurs.

We (the daughters) gain strength and power–and this time to “be on top,” allows us to feel less threatened–and when we’re not threatened–we can be generous with our love.

Eventually, the scales balance.

After years of our mother’s having dominance over our lives (the childhood years), we’ve built up resentment, and finally, as time rolls along, we come into our own, we tower above our mothers for a short time, and that isn’t as fun as it sounds. If we’re lucky, and our mothers live a little longer, we become equal bookends, each of us strong in the broken places and worthy of respect.

And then, just when we make peace, our mothers die. It surprises us. It shocks us. This is too soon, we cry. We just got here, to this place of acceptance, to the point to where we can sit in the same room and breathe the same oxygen. We realize how ironically close we really were–all along–even when we thought we weren’t. We love our mothers in a deep-bone way.

We lose ourselves in grief. We just found ourselves in and through and mothers, and then they leave us. We feel abandoned, lost, maybe even angry. But don’t worry, all that we’ve gained grows inside us.

Looking back, I realize I’ve lost two mothers four times.

My birth mother had schizophrenia and I was taken from her as an infant when the voices told her to hurt herself and her children. I lost her again when I was adopted at the age of four. I didn’t know it would be forever. I lost her again when I was 23, and found my birth family only for them to tell me that my mother was dead–she had died one year before I found them. I cried that day, that week, that year–I cried for the mother I would never know.

I lost my adoptive mother to Alzheimer’s before death took her. To look into the face of someone you know so well–someone who you’ve screamed at, cried and fought with, only to have a disease eat away at her brain like battery acid–and to know that she doesn’t know you, remember you, you hold no emotion, no connection. You might as well we a cardboard box. It ravages your soul and all you believe.

And then death came. In a way, a welcome relief to the heartbreak of Alzheimer’s. I knew it would never give me my mother back.

Why now? Why do we lose our mothers just at the point when we can sit beside them and feel at ease, a give and take? Just when we can be ourselves in the presence of our most formidable foes, our most dependable ally, we lose them.

The woman who bore me is no longer alive, but I seem to be her daughter in increasingly profound ways.  ~Johnnetta Betsch Cole

I have no answer for this. The only solace I can give you is that my mother’s life is now my example, her stories, her “ways” ripple through my own life. I don’t idolize her or think she was perfect. That would be an insult to such a great woman. I see her as complex and confounding as ever–but that’s what I like about her, about me.

In a bigger sense, I haven’t lost her, or lost me. We sit side-by-side. Equals. I hear her so much more clearly these days. I feel her respect. I listen.

And now, I have three grown daughters. The torch has been passed. They rail against me at times. I let them. I know the journey they must take to get to their own place of acceptance and strength. I’ll be here. Waiting.

I’m Carol D. O’Dell, the author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir, available on Amazon.

Have You Taken Caregiving Too Far For Your Own Good?

I was recently at an event where a woman received the caregiver of the year award for her community.

Her daughter wrote a lovely letter about all her mother did for her mother.

The list started at about 5am and ended about midnight–with frequent middle of the night interruptions as well. The list went on and on. Daily baths, attention paid to her mother’s nails, lotions, pulling chin hairs…on and on and on. She got a standing ovation, but my heart ached for her. She was in her early 50s and looked in her late 70s. She was smiling but looked as if life had beat her with a crowbar.

It sounds vailiant. And it is, in some ways, but caregiving can be taken to the max–it isn’t so good for you–or even your care receiver.

You have to give your loved ones their daily medication.

You have to take them to the doctors.

You have to bathe and them and change their clothes.

Right?

And yes–you do. But are you caregiving too well?

What do I mean?

You can become obsessed with caregiivng and use it to avoid other aspects of your own life.

You can ruin your health and your relationships on this noble “holy grail.”

I’m a big proponent of family caregiving, but some cultures are so tightly bound to a sense of duty that people (particularly women) have few options and caregiving becomes a noose that’s winds up snuffing out lives and dreams. 

And let’s face it, we bring our entire family history into our caregiving roles. OUr past experiences are like a bowl full of fish hooks–you can’t pull up just one without getting a whole mess of them.

Was your mother/father/spouse controlling?

Did you feel as if you could never totally please them?

Carol Bradley Bursack who writes a great blog at www.MindingOurElders.com reminded me that deep down we (all of us whether we consider ourselves obsessive-compulsive or not) struggle to achieve our parents love. We try to “earn” their blessing when in truth, we need to give ourselves our own deep sense of love, mercy, and acceptance.

No one can ever give to you what you need to give to yourself.

You can use caregiving:

to avoid your marriage

your health

your financial setbacks

your relationships with your own children or relatives.

You can use caregiving and family duties to avoid:

going to work, building a career

returning to school

or finding a mate

You husband or wife, mother or father can become your “living doll.”

Don’t be embarrassed. It’s easy to do.

You may even have a natural propensity toward being a nurturer, and you’ve become “good” at caring. Too good. (This applies to men and women–men like to feel needed too). Being a parents for 20+ years–or not having the opportunity to parents can also contribute to a deep sense of needing to be needed, to belong and connect, to be good at something.

How do you know if you’re obsessed with caregiving?

• Your caregiving duties continue to increase–more baths, more attention to detail.
• You tell yourself it’s necessary, but others seem to question you.
• You are an expert in your loved one’s illness but are ignoring your own body’s warning signs.
• You haven’t taken a day off in months.
• Your other relationships are dwindling.
• You feel as if you have nothing in common with the outside world.
• You constantly think, “they don’t understand.”
• You take a deep sense of pride when someone says you’re a great daughter/son/caregiver–and you actually try to create situations (subconsciously) where someone would be prompted to say this.
• You never sit down because there’s always something to do.
• You’re getting less than 5-6 hours sleep a night on a regular basis.
• You fear when your loved one dies and almost feel frantic at the thought of wide open days with no one to pick up after, watch, feed, or medicate.

I know, this just sounds like normal caregiving! What’s the difference?

It’s more about intensity, urgency, and an underlying, almost imperceptible sense of fear–you’ll be found out, your loved one will “die on your watch,” they’ll take your mom from you, you’ll have to put her “in one of those places.”

***

What’s your unsaid driving force?

Fill in the blank…”I’m afraid that if I don’t ________, that __________will happen–and it’ll be my fault.”

*****

Now, be rational. Talk to yourself as if you were your best friend. Is this really true? Wouldn’t you (your best friend you) cut you a little slack?

There were times when I did get this sort of sick sense of pride that I was the “best caregiver in the world,” while underneath I felt like a sham–and in reality I felt like I never could do enough. I never could “fix” or manage my life.

Alzheimer’s really does a number on you–you feel like you owe it to your loved one to do everything you can for them–that this is such a horrible, horrific disease that you want to counter it in some way, but you can’t.

I had many arguments: ”If I’m going to do something, I might as well do it well. This is where God wants me and needs me. She’s my mother–and wasn’t this the right thing to do? Any of these sound familiar?

I couldn’t help it that my caregiving duties never ended.

I also know there are some of you out there who say you’re a perfectionist–you can’t stand a mess. You can’t relax until everything done and cleaned up.

Really? If that were the case, then I could never relax because I’m not sure I’ve ever been “caught up” even once in my entire life?

It’s funny that we call that being a perfectionist.

I’ve changed that word in my mind to mean something different.

A perfectionist sees the “perfect” and the good in everyone and everything that sounds me.

I came across this mindset in a book by life coach and inspirational speaker, Allen Cohen.

This is who I choose to be–and how I choose to see the world. (It’s a work in progress and a daily, moment to moment choice).

Sometimes you just have to let the chaos rule!

No, an adult doesn’t have to have a full bath every day.

It’s okay to have a frozen meal, pizza, or eggs for dinner.

It’s okay if your there are dishes in your sink when you go to bed at night.

It’s okay to take a day–or (gasp) a weekend off and arrange for respite care.

It’s okay to sign up for a class once a week.

It’s okay to call and invite a friend to lunch.

It’s okay if you don’t take your loved one to follow up doctor appointments–just for a recheck.

It’s okay to notice that there are areas of caregiving that you might have taken too far.

Laugh! Take a deep breath, and make a new choice. Find the perfect in the imperfect.

You won’t be able to turn off your caregiving gene, but with some forethought, you can learn to balance out the needs of your loved one–and still find time to build a life outside of caregiving. You will begin to value the few moments you give yourself and look forward to taking a class, or even taking a walk.

~Carol O’Dell, author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

Caregiver, Are You Too Hard on Yourself?

Dad Won’t Quit Pacing! What You Need to Know About Agitation and Alzheimer’s

Alzheimer’s usually strikes when someone is older–a time in their life when people typically slow down.

Many Alzheimer’s live on the edge–always anxious, overly alert, agitated, and sometimes mean.

A common sight in a memory disorder unit, facility, or center (they can be called different names) is to see a person walking and walking. Pacing like a caged cougar.

They never sit. They have a wild look in their eye.

Only when you see several Alzheimer’s/dementia/Lewy Body (a Parkinson’s form of dementia) all together do you realize that your loved one isn’t the only one who does this–that it must be the effect of Alzheimer’s on the brain and nervous system.

It’s exhausting to watch and even more exhausting to keep up with.

It can cause them to wander–try to slip out–and if they do, get lost.

That’s a caregiver’s worst nightmare–their loved one out side of safety, vulnerable to everything and everyone from being hit by a car, lost in the woods, or god forbid–hurt by someone cruel.

Why can’t people with dementia or Alzheimer’s seem to settle down and relax?

Agitation is one of the challeges of Alzheimer’s behavour.

Agitation and other behavoiral changes are caused by the changes in the brain–the brain is in many ways, shrinking. The delicate pistons that fire the synapse is not always firing or hitting the intended area or “target.” This can cause all kind of sensations–a person can become sensitive to sound or light or texure–they can crave it or recoil from it. There can sometimes be hallucinations, delusions, (especially with Lewy Body–which usually includes more of a shuffled walk)

A person with advanced Alzheimer’s can forget how to talk and only babble.

Many things can happen in our brains, which means Alzheimer’s will effect people differently.

What do you do if your spouse/parent/loved one paces/walks incessantly?

• If the person with Alzheimer’s becomes anxious or If it’s safe, let them walk. I know you think they’re old, their knees are in bad shape, and how can they keep doing this? It’s a need, a drive–and at this stage of the game, their knees can’t be your primary concern. Let them walk.
• Listen to the person’s frustration. Does it make sense? Can you help in some way? Does the cat bother them–or the red planter in the window? If there’s something that’s irratating them–no matter how odd–and you can move it, then move it.
• Reassure the person. Use calming phrases and let the person know you’re there for them but also realize this may not comfort them at all. Do the best you can. Know when to be firm. Say it in a kind way, but if they’re trying to get out the door, then you will have to distract and be firm–for their own safety.
• Many people (men and women) respond better to a male voice. They perceive it as the voice of authority, so consider using a lower, clearer tone–or finding a male to impersonate Barry White for you!
• Don’t use so many words when giving direction. Be clear. 2-3 words are enough. “Sit in this chair.” “Time to eat.” Don’t yell or startle them even when it seems like it is needed. It usually doesn’t work and will only make things work. You can firmly state, “NO.” Use your strong voice, not a yelling panic voice.
• Even those with brain disorders can pick up on fear or anger–it’s contagious!
• Involve the person in activities. Use art, music or touch to help the person relax. This isn’t patronizing even though it feels like pre-school. Music therapy really does work and has been documented to sooth those who are agitated. 
• Modify the environment. Decrease noise and distractions or move to another place.  Just as with a young child, you baby proof your cabins and put up baby gates to keep them from falling down the stairs. This isn’t treating your elder with disrespect. This is to make them safe.
• Keep a look out for new possible hazards. It’s amazing the trouble one person with Alzheimer’s can get into!
• Find outlets for the person’s energy. Have you been outsidein the last few days? Gone for a car ride? If this is no longer possible, then have you opened the windows? Aired out the place? Can you play ball or fold towels? Some people really need that tactile sensation. Some women like dolls. Some people respond to a small dog–for others it would be a danger (for the dog, I mean ). Can you keep a Tupperware drawer and create “jobs” for them of loading and unloading?
• Keep a sense of humor. It’s just the brain gone kaflooey. Your loved one isn’t trying to mean (most of the time) or drive you crazy (most of the time).
• If you find your patience is gone for the day, then maybe you need to go as well. Just because your loved one can’t take a walk doesn’t mean you can’t.

If you’re dealing with the later stages of Alzheimer’s, dementia and memory loss, then know that you are dealing with a massive amount of stress.

Most professionals burn out at this point, and in many memory loss units, some are advised to only work three days a week so that the stress doesn’t hurt them or ripple out to the patients and their families.

You have got to de-stress! Even if you just visit your loved one, you have to let it go after the visit.

You know how you have to go through decontamination if you are exposed to radioactive material? Visualize that.  Walk, cry, scream, eat–don’t forget to eat–but if you’re food cramming (stress eating in other words) then forbid anyone to bring Oreos or Doritios or whatever triggers you.

You’re in a more stressful job than air traffic control. Treat your body and your heart with tenderness during this very difficult time. Don’t expect to be on an even keel. Expect to cry, feel numb, zone out, not be able to talk about your experience–this is profound, and while that sounds terrible, it’s not. You can do this and do it with love and compassion. Your loved one needs you to watch over them.

Also know that this is the stage where many of our loved ones have to placed in a facility–for their safety and yours–because their needs are more than you and your team/community can manage.
It’s okay if this happens. You’ve done all you can. Say thank you for the help, for the option. Let them take some of the load. Find the best place you can. Visit often. Be vigilant and watch over your loved one–but know that it’s time to begin to let go. It’s time to allow others to help.

• Stay calm and be understanding. • Be patient and flexible
• Look for reasons for each particular
• Respond to the emotion, not the behavior
• Don’t argue or try to convince
• Acknowledge requests and respond to them
• Accept the behavior as a reality of the disease and try to work through it

It’s also important to prepare other family members before they visit.
Alzheimer’s can be very disturbing if you’re not familiar with the “quirks” that come with it. By talking about it ahead of time, letting the person know what they’ll see or how they’ll be talked to or treated–and how to react–will help immensely.

CNA’s and other elder-health professionals get training in dealing with Alzheimer’s behaviour, but sadly most family caregivers don’t. They have to figure it out for themselves. Many loved ones are placed in a care facility prematurely (or too late) because we simply don’t know what to say or do.

Alzheimer’s is kind of like the wizard in the Wizard of Oz. Once you go behind the curtain–begin to analyze what’s happening, why, and have tools and coping mechanisms–it’s not so intimidating.

These are still our loved ones.

Trapped inside every feeble or rigid body, behind every frozen face or babbling talk, is someone’s mom, dad, husband or wife.

Please visit this blog again!

Carol is the author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir. It’s available on Amazon and in bookstores.

The Benefits of Laughter–A Caregiver’s Greatest Ally

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