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Archive for the ‘dementia’ Category

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

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

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

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

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

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

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

~Carol D. O’Dell

Author of Mothering Mother, available on Kindle

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Caregiving and romance doesn’t seem to go hand-in-hand, but in many ways, it’s the epitome of real love. To care for a spouse, to set aside other aspects of your life and even your marriage to care for an aging or ill parent or child, is about grown up love–the kind that gives, and at times, the kind that sacrifices. Keeping love alive isn’t always easy under the best of life’s busy circumstances, and caregivers even have added stress, but it’s so worth the challenge.

Love Do’s:

Number one goal: Survive. We call ourselves “Team O’Dell.” Some days we felt like a black-ops team whose goal was to get through the dangerous landmines of caregiving and raising teens without committing kamikaze. Wasn’t easy, but I liked the idea of the two of us on a covert mission. However you do it, stay united.

Do keep a bigger vision in focus: Your marriage, your health, your sanity, your humor, your passion–keep that visionary “finish line” ribbon in site. No matter what happens, how long or how hard caregiving gets, the goal is survive–and even thrive.

Do practice good manners. Kisses hello and goodbye, thank you for the hot tea, opening the door for your lady–treat each other like you would on your first date. Why? Because in honoring someone else, we honor ourselves and our relationship. It takes a bit of discipline at first and then it’s easy–and really helps to smooth things over on tough days.

Do compliment each other. Tell your loved one how brave they are. How compassionate they are. How funny they are. Caregivers (for the most part) don’t feel attractive, don’t feel perky or sexy, so remind them they are. Nothing is sexier than someone who knows how to love.  Compliments never get old–not when they’re genuine.

Do look for moments of connection. Forget going on a two-week vacation for now–don’t even torture yourself with the idea. You may not even be able to go on a two hour dinner date, much less a weekend getaway–so grab a kiss in the garage, dance to your favorite song in the kitchen, or better yet–start each day with a shower together! (that was the one place my mother respected my privacy–I think she was part-cat and was afraid to get wet!)

Do celebrate every chance you get. See some gorgeous wildflowers in bloom on the side of the road? Stop and grab a handful. Buy her a mini cupcake and stick a candle in it as a “you survived another week” celebration. Celebrating isnt about fancy gifts, it’s about taking notice.

Do say thank you often. Every day, in fact. Consider a gratitude board where everyone writes what they’re thankful for–a great kitchen or laundry room addition. Use a bit of irony: “I’m thankful I didn’t pull all my hair out today–or I’m thankful I didn’t rip that doctor’s nose off when he trated me so condescendingly.” Not all gratitude has to sound like a Hallmark card.

Do invest in your emotional and relationship bank account. The caregiving years may be a time for withdrawals more than deposits. That’s okay. Know that your relationship is strong enough to go on auto-pilot for awhile.

Do give mercy cards. Your spouse snapped at you for no reason? Don’t snap back–offer a mercy card instead. Sometimes we need to let something go, look over it, and realize they’re under so much stress that just need someone to cut them some slack.

Do stand up to your spouse when you need to. The other side of mercy is a showdown, and sometimes that’s just what’s needed. If you spouse is being an ass, pull him or her aside privately and tell them the strong truth. Sometimes it’s the cold-water thrown in your face that gets your attention.

Do use the ole’ good cop-bad cop routine if you have to. Let your spouse use you as an excuse if they need to. Sometimes we need to blame someone else–it’s okay–use every tactic you need to. In times of war the rules change. In times of caregiving, the rules change.

Do know and expect that the love and energy you give out will come back to you. Demand it back. Fully expect that your health and your relationship will rebound. We’re actually hardwired with tremendous reserves for time of great stress or need. That’s why we have such amazing brain and muscle reserve. When you need it, it’s there–but be prepared for the adrenaline dump that comes after it.

Do know how to pace yourself and take needed breaks. You can deplete those reserves–and then you have nothing left and your health can be in serious jeopardy. A six week hospital stint, a month of all-nighters–and before you know it, you are completely shot. Have you ever seen some daredevil on television do something so reckless that it’s just plain stupid? Don’t be a daredevil with your health (mental or physical) for anyone else. If you go past that, its dangerous ground. Accept that there’s is a limit to what you can do.

Do consider each other a source of strength. The arms of you spouse or partner should be the safest place on earth. Create a haven for each other.

Do know that caregiving will end–and yes, eventually it will circle back and begin again. So when caregiving comes to an end, grive, reocver and then…live, celebrate, play, work–fill your life in a million meaningful ways. It takes some time to get back to feeling connected with the rest of humanity, but it will come. We’re meant to be fully engaged on this big blue ball–so when you can, while you can, go make memories, do some good out there, learn, explore, give back, kick up your heels and make some noise!

Keeping love alive is crucial but it isn’t going to be easy.

Whether it’s Valentine’s Day or any ole day, you’ve got to have some fight and some passion in your relationship. Being a caregiver isn’t about squelching all the other parts of you–it’s about weaving them in anytime and anyway you can. Be willing to invest and preserve your relationships and be determined that caregiving won’t take you down for the count. Caregiving is yet another thing you can look back on and realize that ironically it made you strong and it’s a part of who the two of you are.

Life is precious and caregiving seasons come and go. When it’s time to play, to travel, to really get out there–do it with all you’ve got!

In the words of my daddy, “Be good and take care of each other.”

~Carol D. O’Dell

Author of Mothering Mother, available on Kindle

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A friend of mine told me that she confronted her mom about her memory loss and told her she was concerned it might be dementia or Alzheimer’s. Like many caregivers her hope was that she could convince her mom to visit a neurologist. Instead, her mom got furious and now won’t talk to her. My friend is devastated. She wonders if she stepped over the line, if she should have just made up another excuse to get her to the doctor, or if she should have just let it go. Now, there’s nothing but silence.

Being shut out of a loved one’s life really hurts. You question everything you said or did. You feel rejected when all you wanted to do was to help. What do you do now?

There’s no one right answer. Every family is different.

Suggestions for getting past the hurt: 

  • Give it some time–many people come around after their hurt and anger has subsided.
  • After a cooling off period, act like nothing has happened.
  • Try reasoning with them and assure them that avoiding the matter only makes it worse–and it might be a medication interaction or something else, but it’s best to know and be proactive.
  • Pull the “big guns” and insist the two of you go to the doctor–some people respond to a firm hand.
  • Try a bribe–is there something they’ve been wanting to do? For you to take them to see their sister, or take them to play the slots? Use whatever helps them safe face.
  • Send gifts and cards and lure them back. Be the bigger one and realize that you’re their lifeline and they need you right now–and if they want to “feel”  or “look” in charge, then let them.
  • Get someone else who’s on their good side to take them. They may not want to give into you, but they may go with their sister or best friend.
  • Leapfrog over a diagnosis and start dealing with the day-to-day concerns and issues you can do something about.

***

In the meantime, keep a journal. Make a note of any excuse, lie, avoidance, any times of confusion or bizarre findings such as the keys in the freezer, when they got lost coming home from the corner bank, or when they mentioned visiting a long deceased relative. As a caregiver you need to know what you’re dealing with and how often it’s happening.

Realize that a diagnosis isn’t going to do much–not in practical ways.

There’s no cure for dementia or Alzheimer’s and that the meds only work during the early phases of the disease and the medications only work on about half the people taking it, only slows the progression of the disease and typically only helps for about a year. But if your loved one is experiencing paranoia, anger issues, or anxiety, then ask about medications that can help these very real and very frustrating conditions.

If you suspect your loved one has memory loss then they probably do. so start working on practical aides (notes around the house, home monitoring, safety precautions such as a medical alert bracelet, and home help or live-in assistance, just to name a few).

Alzheimer’s and dementia certainly has its challenges, especially emotional ones. As the caregiver you have to be the bigger person. You have to do what’s right and not think about your feelings. Step over the hurt and find a way to reconnect.

~Carol D. O’Dell

Author of Mothering Mother, available on Kindle

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Many people think that caregiving and womanhood go hand-in-hand. We’re nurterers by nature, we’re led to believe. Probably because they don’t want to do it (whoever “they” are). You’re good at it–so you should do it. We’re also good at cleaning the bathroom–not because we have a knack for it–it’s mostly because nobody in the house seems to even notice (I’m generalizing).

Caregiving can seem to run counter-intuitive to staying a woman.  Maintaining a vibrant, healthy, dynamic, enticing, savvy and nurturing selfhood can literally be sucked out of you by never-ending days, with the medical and insurance world, worry, regret, guilt, grief–who can be “womanly” with all that?

The truth is that what’s behind going on behind most front doors is that we know caring for our loved ones–whether babies or elders–is an important job–and most of the time, only one person in the family has the strength, autonomy, and chutzpah to do it.  We’re lonely and scared, brave and exhausted. We fear we don’t know what we’re doing. We fear we’ll be found out.

We try to be patient and kind but oftentimes, we fall short. We feel like we’re trying to outrun disease and death–and impossible task. We feel helpless to stop pain and depression. We love what we do but we worry about our own health and relationships–and we feel as if we’re giving huge chunks of our own life away–and in some ways we do it willingly, but we grieve all we’ve lost. We’d cry or even give up, but we don’t have the time–and something deep inside us  urges us to get up and go on.

Let me clarify this: there are many ways to be a woman. We don’t all need to be pin-up dolls. We’re far to rich and textured, complex and fascinating to be shoved in one tiny box. We can be cowgirls, butchers, dentists, outriggers, poets and prophets. Short hair, no hair, long hair, big boobs, no boobs, there’s no one way to be–but all these ways of being can be in jeopardy if you (or others) ask too much of you and you never fill your reservoirs.

But how? Your snarky self asks.

I know. My caregiving years were largely make-upless (not that you have to) pudgy due to horrible eating at 2 am (me and a bag of Oreos met for regular intimate discussions on the stresses and strains of caring for a mother with Alzheimer’s and Parkinson’s who had no respect for the words, “It’s after midnight for (#*%& sake!!!)

And worse, I was ugly–to myself–ugly thoughts, self-deprecating eat ca-cah and die, your life is over, your friends are gone, you’ll never go on vacation again, your kids will never want to take care of you, not after this, sex? are you kidding? can we say hello 200 pounds? That kind of looping inner-monologue.

I often wonder, if I could gather all my thoughts about my weight, my body, my hair, my boobs, my s0-and so doesn’t like me, am I pretty, am I sexy, too sexy, not enough, way to much–and I took all those seconds and used that brain power and time to say, learn a language, get a degree, or…run a small country…what could I accomplish?

So I’m not going to preach to you about treadmills. I’m going to tell you how I got through, and I do mean got through. “I will find you. No matter how far or how long, stay alive and I will find you!” I could hear my inner Daniel Day Lewis from Last of the Mohicans yell to me from the cascading waterfall.

So how did I get through?

I journaled all the crap going on in my head–allowed myself to vent all the really ugly scary nasty truthful tearful and sometimes hopeful, crazy and funny things I was thinking and experiencing.

I walked outside and cried a lot. Nature had a way of soothig my soul. A red cardinal on a branch, a sunset so red and so orange that I forgot my pain. The wind whipping in and around the trees turning the whole world into a dance.

I screamed in the car and in the shower. Yes, I too am surprised the neighbors didn’t call the cops. I hoped someone would call DFACs (department of children and family services) to come to my home and SOMEONE, ANYONE away. Do they have foster homes for fussy moms and rolling eyed teens? How about for grumpy caregiver?

I gave up trying to keep a tidy house. Between a hospital bed, portable potty, bedpan, cane, walker, mother who liked to go “shopping” or “trashing” in the middle of the night (she would have fit right in at a frat party), teenagers, dogs, cats, home health aides traipsing in at all hours of the day, I just gave up. Welcome to clutter-ville.

I did decide that my room was off limits. Our bedroom was the only room I refused for junk to pile up in. I bought a gorgeous bedspread–that kind that can thrown in place and look decent, painted the wall behind my bed a sumptous eggplant and bought a nice strong lock for my door. Best thing I ever did–that and the coffee maker I put in my bathroom so I could have my coffee before I hit the world full-tilt.

I watched the Food Channel and HGTV. I read about a half a poem a day. All the reading I could fit in–but I wanted it to make my soul howl for beauty. I opened art books so when I walked by I could Van Gogh’s Sunflowers.

I signed up for college. CRAZY, I hear you say. Yeah, but one night a week I left my mother in the care of my husband and two kids (God bless ‘em) and I attended class. It was the most amazing experience of my life. I have no idea how I pulled it off, how I studied, but I did.

I drank good coffee. Elixar of the Gods. That’s all I’m saying.

I decided that I was probably going to have to deal with the weight thing after caregiving. And I did.

I allowed my loved ones to hug me–and help. That was probably toughest of all. Me, super-amazing, I can do it all–accepting assistance. Admitting I could in no way do it all. Not even do it half. More like do it crappy. Multigenerational households, sandwich generation folks are ironically blessed. Triple the work, but lighter the load. My kids learned kindness, patience, and reaching out beyond themselves. My marriage grew stronger. Add caregiving to the list of things we survived.

I got to where I would talk back to my mother. That’s the great thing about Alzheimer’s–she wouldn’t remember it in five minutes, but I sure felt a ton better! Not vile stuff I’d have to ask forgiveness for on her deathbed (that’s okay, too) but the honest truths/stand up for myself/I’m your adult daughter doing the best I can so back off kind of stuff. The stuff I should have been doing all along.

I allowed each day to be what it was. Some good. Some awful. Kind of like a rip-tide. Fighting against it useless. Just don’t drown. Let it take you–out–far out. Then, when it releases you, swim like hell.

Somehow, Daniel Day Lewis met me on the other side (recurring fantasy, I admit). My mom passed–but she was 92. Good long life–career, marriage, child, grandchildren–the kind of life we all hope to have. Overall, she didn’t get too sick or too out there until the last three, maybe four years.

She taught me how to live, lots of what not to do, but lots of what to do. I made peace with my biggest adversary. Not her, myself. She just led the way.

And my womanhood–it survived. Maybe those caregiving years weren’t my sexiest years–but sexy isn’t always the goal, now, is it?

~Carol D. O’Dell

Author of Mothering Mother, available on Kindle

In spite of everything, yes, let’s !

                               ~Vincent Van Gogh

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

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

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

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

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

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

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

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

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

~Carol D. O’Dell

Author of Mothering Mother, available on Kindle

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April 8th and 9th, I’m speaking at the Owensboro Community and Technical College in Owensboro Kentucky, and at every caregiving workshop and talk I give, I meet young men and women who are caring for an elderly grandparent. Many of them have moved in with their grandmother or grandfather and while they’re going to college or working a job, they come home each evening to spend time with the “older generation.” They do home chores, coordinate doctor visits–and what’s amazing is–no one is making them do this. They’re caregiving their grandparents because they want to.

Here’s Why Grandchildren Care for Their Grandparents: (In their own words)

“My parents divorced when I was young and my grandmother was the one person who was really there when I was a child.”

“I’ve always felt close to my grandparents–why wouldn’t I pitch in?”

“Living with my grandmother is a lot easier than living with my mother. Our living arrangement has worked out well. She needs a little help and I need a place to stay. Besides, she’s a lot of fun.”

“Our family is small. I don’t want to miss the time we have left. My grandparents give me a sense of family legacy I wouldn’t have without them.”

“If  my Mom and I didn’t help out with our granddad, he’d have to go to a care home–he’s not very social and I don’t think he’d be happy there. We take him to the store and to the library. Mom and I take turns driving him to doctor appointments–and what’s nice is that my children get to know their granddad.

Caring for a grandparent carries a unique reward. Many of us are close to our grandparents because they doted on us as children. Grandparents are oftentimes their grandchildren’s babysitters or their grandparent even had custody of them. So in many cases, the grandchild has spent more time with their grandparent than with their parent.

It also speaks to the power of family. Many young adults want to keep those connections alive. They don’t feel they have a lot of family history–especially if they’ve experienced divorce, death, or an illness in the family–it’s even more important.

What are the challenges a grandchild faces while caregiving a grandparent?

  • Dealing with elder-care illness and doctor appointments.
  • Feeling “old” or weighed down at a young age.
  • Juggling their own school, work, or children’s schedules along with their caregiving responsibilities.
  • Conflicts with siblings or other family members who won’t help out.
  • Shouldering some of the finanical costs that come with elder-care.

Amy, a friend of mine is 32. She lived with her grandparents for 5 years–during and after college. “I wouldn’t trade that time for anything in the world. Sure, it was hard, but I loved them so much. My Gramps died the second year–and my Grams died last year–I had to place her in a home because her dementia got so bad I couldn’t care for her and continue to work–and I had to work. Still, I know I did the best I could for both of them,” Amy says.

“As a young caregiver, there may be plenty of challenges, so be sure to ask for lots of help–but as I said–I’d do it all over again,” Amy continued.

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After a decade of caring for my mother who had Parkinson’s, Alzheimer’s and heart disease, then brought her into our home the last 2+ years of her life, this is the distilled version of what caregiving taught me. I am profoundly grateful for these lessons.

  1. To stand up for myself, and caregiving will give me plenty of opportunities to do so.
  2. There is a time in life in which you sacrifice for someone you love–and a time to stop sacrificing.  
  3. It takes humor to tackle the big scary things in life, like caregiving, disease, and death.
  4. Caregiving will inevitably bring out the worst–and the best in me.
  5. Caregiving will change me, but it’s up to me to determine how.
  6. I can’t stop death.
  7. I can decide how I will live the next moment of my life. One moment at a time.
  8. My emotions are my body’s barometers. I need to listen to these cues, feel them, use them as a catalyst, but know that no one emotion will last forever.
  9. To pace myself. Burnout is very real and very dangerous.
  10. I can’t meet all the needs of another human being. I can’t take the place of my care partner’s spouse, career, friends, or health.
  11. Caregiving is about integrity. I have to choose what is right–for me–and for all the others in my life. No one person gets to be the “only one ” 
  12. When I start to give too much to caregiving, it means I’m avoiding some aspect of my own life’s journey.
  13. Caregiving  isn’t just about caregiving. It unearths every emotional weak spot I have–not to destroy me–but to give me a chance to look at, and even heal that area.
  14. I have to stop being nice and pleasing people. “They” will never be satisfied or think it’s enough. What’s best for me–truly, deeply best–is best for those around me.
  15. Learning to stand up to relatives, authority figures, to my parent or spouse, and even a disease teaches me to be brave, a quality we need.
  16. Give up perfect. Go for decent. Do more of what I’m good at–and ask for help on the rest.
  17. Don’t isolate myself. Being alone, depressed, and negative is easy. Fighting to stay in the game of life–that’s tough, but worth it.
  18. If or when my care partner needs more care than I can provide, or even dies, that doesn’t mean I’ve failed. It means I’ve done all I could and it’s time for change.
  19. You will go the distance. You will live at hospitals, stay up night after night, weep in the deepest part of your soul, question everything you’re doing…and barely come out alive. Caregiving asks, takes this from you. Through this process, you will transform. You will see who you are–the whole of you. You will survive.
  20. Choose to care-give–then do with heart and guts.

To love makes us brave. To be loved gives us courage.

                                                                                                                                       –Lao Tzo, Chinese Philosopher

Carol O’Dell

Author of Mothering Mother

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Dr. Christiane Northrup did a PBS talk on the Wisdom of Menopause in which she reminds me that nothing–not caregiving–not menopause is brought into my life to destroy me. It’s to make me pay attention. To love and accept myself more–not less. Over-caregiving is more common than you think. I’m guilty of it myself–at times. I had to learn that I couldn’t fix my mother–I couldn’t take the place of her beloved husband after Daddy died. I couldn’t stop Alzheimer’s. I couldn’t be her all in all. And I had to stop trying.

Dr. Northrup used the excellent model of breastfeeding to correlate how we should care-give. Being a young mother is another time of extreme care. We physically and emotionally give our all to birth a new life. In order to breast feed, you have to feed yourself. You use up 600-1000 calories a day breastfeeding. What you eat, how you sleep, how stressed you are–all effects your ability to produce milk. If you go for even a few days without eating healthy and sleeping well, your milk production will begin to wane. What a great example. You can’t give out, unless you give in. Your body–and your spirit just won’t do it.

She also mentioned that a doctor friend of hers wrote on his prescription pad to a woman “See your mother ONLY 2 times a week.” Doctor’s orders. Sometimes we need others in authority to give us permission to take better care of ourselves.

I remember one day when my mother shuffled into my kitchen with a scowl on face. She slammed her hand down on the counter and announced,

“I”m not happy!”

She had a “and what are you gonna do about it look on her face.”

I started to smile. Revelation.

I realized in that moment that the only person I could make happy–was me.

We can never fill up another human being. We can’t make up for aging and disease–or for their lack of caring for their lives and health all along. Our best way to give is to know what ways ive best.

How do you know when you’re over-caregiving?

When you have zero time for your own health and relationships. But, but…you argue. If you are getting less than 6 hours sleep, are spending all your time taking care of someone else’s physical and emotional needs, feel like your stress levels are above an 8 almost all the time, then yes, you’re over-caregiving.

How to stop over-caregiving?

Care-give  ala’ carte style. Pick and choose and don’t even try to do it all.

What are you good at?

What does your mom–or dad–or spouse value?

What seems to be working?

What isn’t working?

So, if you’re a great cook and they eat for you, then cook and fill their tummies with homemade soup and decadent brownies.

If they like for you to be at their doctor’s appointments, then build that into your schedule.

If you tend to fight every time you start trying to organize their house–then quit.

But I dont’ have a choice. If I don’t do it, it won’t get done.

Then it won’t get done. Be willing to live with it.

For example, I stopped going to re-check appointments. My mom had Parkinson’s and Alzheimer’s, as well as heart disease. I took her in for her six month check-ups, but no follow-ups. I got her meds and created a structure we could live with. I dealt as best as I could with the emergencies that came up.

I also said no to hospitalizations. They wanted to try exploratory surgery. Really? On a 90 year old with all these conditions? I said no. The medical profession looked at me as if I were a bad daughter, but I didn’t care.

Ask yourself: Does it need to get done? Will it improve the quality of life enough to warrant the work/commitment?

Yeah, some things do. But do the minimum in the area you’re not good at or don’t think it will pay off. Or ask someone to help.

If you have to choose–choose to meet your needs first.

What?

Yep, that’s what I said.

You can’t reverse Alzheimer’s once it’s started.

But you can prevent heart disease (the number one killer in the US) in your own heart!. Go for a walk. De-process food your house. Sign up for yoga. Rent all your favorite funny movies and invite a friend over for a laugh fest.

Sounds too simple? It’s because it is simple. Choose health CARE over health-care. Do what you can, but know that you can’t undo another person’s diseases or problems. Love them, make life comfortable, and give up over-caregiving.

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In the Movie, “Gran TorinoClint Eastwood plays a grumpy old man who has just lost his wife and his adult children want him to sell his house and move into one of those “nice retirement communities.” This is a classic aging in place dilemma. The adult child thinks he knows best and can’t fathom why his elder parent want to stay put.    Walt doesn’t really need caregiving–not yet–what he needs is to be heard and respected. 

It’s not what the character, Walt Kowalski, (Clint character’s name) wants. Even though he lives in a neighborhood that has changed and is in what most people would call the ‘bad side of town,” it’s where he wants to be.

The surprise of this film is that  Walt really has a soft underbelly and the most unlikely people bring it out–the Hmong Korean family who live next door. He fought in the Korean war and has a derogatory name for everybody. He pushes most people away. He’s rude, spouts politically incorrect comment about everybody, and seems miserable. Only he’s not. He’s created a world he likes. He keeps and lawn, his house, and yes, his car–a 1972 Gran Torino in mint condition. He misses his wife–who happened to be the one person who brought out the best of him–everyday.

In a believable and surprising turn, Walt befriends the Korean teens next door==after the kid tries to steal his beloved car. He becomes a reluctant mentor and eventually, their friend. The Korean family dynamics of closeness and honor is something  Walt admires (even though he doesn’t want to admit it).  Walt sees that this young boy, Thao, who is about 15 and not the thug his cousins are, needs to learn how to be a man. The 17 year old Korean girl, Sue, is like his wife–kind, thoughtful, and patient. She wriggles into his heart and life in tender and poignant ways.

This movie isn’t just about an old guy wanting to stay in his house. That’s just the catalyst. It’s about a quiet and unexpected hero. It’s about a man teaching a boy how to be a man. It shows that sometimes our families don’t get us. They have their own agendas. Sometimes we find family in unlikely places.

An interesting aspect of this film is that it’s a family affair. Clint’s younger son plays his movie son–the busy/upwardly mobile family man who thinks his dad is a fool for staying in that neighborhood and is pushing the move. His other son wrote the musical score for this film. It would be interesting to hear from the three of them what they think of this family’s dynamics and how they plan to handle their own “golden years–or their dad’s.

If you’re needing to talk to your family or adult children about your choices of where you’d like to live and how you’d like to live, start by asking them to watch this film. It can open their hearts and hopefully kickstart and honest–and respected–conversation.

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Maybe you’re not the one doing the day-to-day caregiving–maybe you’re the spouse, partner, the one who would get “best supporting” if there were an Oscar or some other shiny statue given for “Best Caregiving Award.”

Being the sidekick behind or rather beside the caregiver is a VERY important and crucial role. I know because I’m not sure I could have done what I did–care for my mom who had Alzheimer’s, Parkinson’s, heart disease and lived with us–if it hadn’t been for my other caregiving half.

My husband, (my caregiving spouse) had a lot to contend with. He put up with my moods–my many, many spontaneous, combustible moods. He put up with some doozy mother-daughter fights–fights between my mother and me and fights between my daughters and me. (I’m beginning to realize I was at the hub of all the fights!)

He went with the flow, would order pizza if I was too frazzled to cook (the man can’t cook), would run our daughters to wherever they needed to go–or stay with my mom so I could. He did without vacations, built my mom’s apartment onto our house, picked up my mom when she fell, and seemed to do it with a good attitude instead of a “I’m not getting attention” whine that wouldn’t have gotten him anywhere anyway. I had my hands full and he knew it.

So I decided for this blog to turn to ask my husband, Phillip, if he had a friend who said, “My wife’s mom is moving in and needs caregiving–how do  I support her?”  What would he say?

How to Support a Caregiving Spouse:  (by a caregiving spouse)

  • Listen–a lot: If she needs to cry, hold her. If she needs to complain, give her the time and space to vent. Call her throughout the day. Turn off the television when she’s (I’m using the pronoun “she” but it goes either way)  talking.
  • Lighten her load any way you can: Pick up extra chores. Pitch in. Get the kids to help, too. Look for things that need doing–don’t wait to be told.
  • Pay attention to your spouse’s needs: It’s your job to take care of her so she can take care of others. Notice if she’s tired and make her hot tea. Rub her feet, wash her hair, offer to mom-sit, do the little things only you can do.  Consider it family care–not just something your spouse does.

Wow. It didn’t  take him but three seconds to come up with that–because he lived it. He was right beside me all the way. I can honestly say that he was my backbone when I didn’t feel I had one. He wrapped me in his arms day after day after day. He did without sex, sleep, decent meals and even a pleasant wife–many times over. He never complained. He seemed to know what I need and he wouldn’t let me give up even when I wanted to–because he knew deep down, I didn’t want to. He was there when my mom died, and he was there in those dark and lost days after.

Caregiving is hard on a marriage/relationship at times, but it also brings out the best in us. We see what we’re made of–and in the end, we look back at our lives and remember all we’ve been through side-by-side.

Caregiving is one of our journeys. One of many.

~Carol D. O’Dell

Author of Mothering Mother, available in hardback or on Kindle

www.caroldodell.com

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