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Posts Tagged ‘family caregiving’

We sat in the Ronald McDonald family room at Shands Children’s Hospital, sequestered for the day, waiting for the pediatric cardiologist to operate on my middle daughter’s 8 day old baby girl. All of my family gathered. We ached with worry, skittered around the edges of dread, squeezed hands and whispered prayers. We also laughed. We have that ability–to tease, to banter, to tell a familiar story, to find sweetness and humor wherever we are. All of us, together, getting through this wonderful and awful day, my daughters, son in-law and husband confined in such a small space, with so much at stake, and yet there we were, healing our own hearts.

I’ve been here before, with both parents, through back surgery, abdominal surgery, heart surgery, through kidney infections, Alzheimer’s and Parkinson’s. I’ve walked this too-familiar road, but never like this.

We drank nasty coffee, the TV on although none of us watched it, flipped through waiting room magazines, covered in blankets, our legs thrown over one another.  The hours dug in long and hard. We’d go through swells of fears and eddies of faith. Some of us took walks, others tried to nap. We played on iPads, shared apps, got fast-food, the only choice we had.

We checked the time, then checked it again. In the lull of the afternoon, our daughter gets a call and steps into the hall. Moments later she flings open the door, her eyes and face already swollen from days of sorrow now blotched and red with fresh tears.

I sprung, arms open…oh god…

The surgery was over. It went well. Our tiny baby’s heart is repaired.

Relief poured up and out of us all. We became a geyser of tears and laughter, cheers and hugs.

If it weren’t for the break that humor gave us, the ability to siphon off some of the dread, the sharing of strength and solace, I don’t know how any of us would have made it through that day. For a caregiver, or family or friend of a caregiver, perhaps this is your greatest gift to give.

How does humor heal? New research has shown that it’s a natural pain reliever and does wonders for our immune system. Laughter is nature’s re-calibrator. Most of all, it’s contagious. And don’t worry about it being inappropriate to smile or laugh when life is at its worst. It’s a testament to the human spirit, to hold the “scary stuff” in one hand, and to balance it with joy, with sweetness, with laughter, in the other.

Even in the darkest of hours, laugh, tease, play and tell a story.

Humor heals. It makes the unbearable bearable. 

 

~Carol O’Dell

Author of Mothering Mother, available at Amazon and on Kindle

Resources:

http://psychcentral.com/blog/archives/2009/02/17/9-ways-that-humor-heals/

http://women.webmd.com/guide/give-your-body-boost-with-laughter

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Being a home caregiver can get a bit claustrophobic. I cared for my mom in our home (she had Parkinson’s, heart disease and Alzheimer’s) the last two-plus years of her life. We had some home health aides but most of it was on me–24/7. I didn’t have the luxury of picking up my keys and purse and walking out of the house any time I felt like it, or even when I needed to. I grew jealous of my husband who got to leave for work and my kids who took off for school, dates, or part-time jobs. Jealousy is a nasty habit.

I used to sarcastically gripe that I was doing time in Sing-Sing and planning a prison escape (the humor aspect gave me some relief but it also allowed me to hear myself out loud). Some days everything in me wanted to run–and yet I had chosen to care for my mom. Why was this so horrible? She needed me and I was the only one.

Her insurance had said that Alzheimer’s didn’t require “skilled nursing care,” therefore didn’t cover it. I cried that day. I felt I had no way out. I didn’t want to take my mom to just any home and leave her there–I had to know she was cared for, and it seemed like I was the only one. What got to me was my lack of choice–which started with me.

And then I saw this beautiful photograph of a cloister. I’m not Catholic, but I’ve long admired a monk’s or nun’s dedication to live in a serene, dedicated environment. Cloisters are peaceful, safe, a haven in the midst of a chaotic world. It’s not that a monk or nun can’t leave–but most stay–the ones who chose this life of their own accord.

That’s when I decided to stop thinking of my life as serving a prison term. I have a good home, a lush yard, and I’m doing something I believe in. I looked around–at the books, the unfinished art projects, the exercise ball and treadmill, the stocked pantry–this isn’t a shabby place to be!

Just that shift re-centered me. I pulled books off the shelf I’ve owned for years but hadn’t got to read. I pulled out a painting I hadn’t finished and started following a couple of Food Channel chefs and gaining some culinary skills. I got out the binoculars and mom and I started watching a pair of cardinals raise their babies in a nearby nest (I’d have to hold the binoculars for her, but she caught a few glimpses).

This one shift–from prison to cloister–gave me a small measure of peace and a grateful heart (but I still snuck a spoon from the kitchen utensil drawer–in case I need to dig a tunnel).

~Carol O’Dell

Author of Mothering Mother, available on Kindle

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There may be 50 million caregivers in the United States, but you feel all alone. You’re stuck at home, going to and from a nursing home or care facility, you’re curled up on that oh so not-comfy orange final chair next to your loved one in a hospital for weeks–isolated, scared, cut off from the life you once lived–and you wonder how long you can keep doing it.

The loneliness and isoluation that comes with caregiving can feel like the last crippling blow. Caregiving takes otherwise outgoing, fun, professional, engaged people and can make you feel like you’ve been put in the proverbial time-out chair with your nose to the corner of life.

Even if you could get out–where would you go? You can forget how to have fun, how to interact with “normal” people, too exhausted to get dressed and meet a friend for lunch, or too concerned to make your own medical appointments–what would you do if they actually found something?

Believe it or not, there’s more caregiving support out there than you probably realize–in your own community, and online.

Where can you go to find caregiving support?

  •  Online caregiving sites, blogs and forums.
  • Check out Caring.com’s new program for those with loved one’s struggling Alzheimer’s.  “Steps and Stages.” is s a great way to plan for your loved one’s care, know what’s coming head, and tap into local community support.
  • Join a forum focused on caregiving needs. You’ll find new friends who are going through just what you are going through–you can vent, get ideas, brainstorm–and just hang out. Some great online caregiving forums can be found at the Alzheimer’s Association site. Also check out Davita, iVillage, Elder-care, and Well-Spouse–each offering

Check out your own community caregiving support.

Go online or make a few calls to the Council on Aging, your senior community center, check with your loved one’s doctor, adult day cares, local care facilities have a list, elder affairs.org and make disease-specific organizations offer local caregiving support groups and activities. Start asking, taking notes, and finding what works for you.

Create Your Own Caregiving Tribe Support

Friends, neighbors, your clergy, your hair dresser, your cousin…a complete stranger you meet on a walk. Share your story. Share where you are. Don’t try to sugar-coat it. Don’t isolate yourself by your own doing–because you feel out of step with the rest of the world. Force yourself to get out, to talk, to share, and to listen.

Keep knocking until someone answers.

~Carol D. O’Dell

Author of Mothering Mother, available on Kindle

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Thanksgiving is more than just turkey, green bean casserole and pumpkin pie. Sights, smells and recipes conjures childhood in a way nothing else can. As my mother’s daughter and caregiver I became the woman in the kitchen.

The roles shifted and I wore the apron but I kept my mother alive–by making dishes from my childhood–Waldorf salad, Daddy’s pound cake recipe, and the best dressing on the planet. I would set my mother in a chair at the kitchen table while I scurried around the kitchen–offering her a taste of this or that and smiling when even with Alzheimer’s she’d suggest a bit more sage.

And then my mother was gone. She passed on a warm June day in our home with the lace curtains swaying and a cardinal on a branch just outisde her window.

That next Thanksgiving was tender.

Whether you still have your mom or dad, or if they’ve passed, I hope you’ll enjoy this Thanksgiving essay.

***

Thanksgiving Morning

I get out Mother’s enamel fruit bowl, the one painted with apples and grapes and pineapples. I know it must be from the fifties. I get out the potatoes and peeler and begin scraping the brown strips that fly and stick to the edges of the bowl. The white chunks are placed in a Revere Ware boiler that Mother gave me as a wedding present twenty-three years ago. I fill it with cold water and a dash of salt, and as I turn on the burner I suddenly feel five again and can see the small mound of salt crystals in the center of Mother’s palm and the quick turn of her wrist.

This is my first Thanksgiving without Mother here.

Sometimes she would stop right in the middle of her cooking, turn the pot upside down for inspection and lay it on the edge of the sink. She sprinkled it with salt and baking soda, then squeezed a little lemon juice from the yellow plastic lemon. Her fingers made little scrubbing circles with a sudsy Brillo pad, her shoulders hunched, her face intent and her whole body pressing down as if she could cleanse the world of its sin. I hung around to watch the quick rinse under the faucet. She tilted the pan for me to see the copper as it gleamed. Satisfied, I’d head outside to swing.

She’s been gone five months now.

I watch and wait for the potatoes to boil, for the familiar starchy foam that gathers first around the edges, turning the water opaque as the potatoes dance. I carry the heavy pot to the sink. The kitchen window fogs from the hot air that rises as the potatoes hit the strainer. With a shake, I pour them back into the fruit bowl, and blend the soft squares with cream, salt, and butter. They give way with each press of the old masher, the red stripe of paint flaking on the handle.

I spoon the fluffy potatoes into the green flute-edged bowl then remember, this bowl was used for the Waldorf salad, not the potatoes. I’m too tired to find another bowl, so I take them to the table, already set with my mother’s grandmother’s crocheted tablecloth and tell myself, no one will notice. Besides, does anyone but me like apples, walnuts, mayonnaise and raisins anyway?

With a snap of the Tupperware lid, I place a dozen cold deviled eggs into the heavy divided egg plate. I see Mother’s hand take two, three, four, then another after a slice of both the pumpkin and pecan pie. Aromas of turkey and pole beans fill the air. I cut up bacon to flavor the beans and watch them simmer with crescents of translucent onion. Mother liked her vegetables tender—they tasted like mush to me; for Thanksgiving, I cook them a little longer.

I would stop and cry, but it would take too long, and the rolls would burn.

The buns, too hot to simply pick up, get shoved or tossed from the aluminum foil-covered cookie sheet into the silver bread warmer, the round one with penguins carved on the sides. I wonder, how many dinners of my childhood did I spend staring at those flightless birds?  Each year, my head slightly higher, I viewed life from a different perspective. I can’t find the top of the warmer, it probably got lost in the move, so I fold a napkin over the rolls to keep them warm.

I put out the turkey on its tray and set it in the middle of the table. I get out a pale yellow organza apron, stiff with starch. Mother must have ironed it some ten, maybe twenty years ago, and although it’s a bit musty and dinner is ready, I tie it around my waist. I remember the slam then the slide of the iron, and that sweet, hot steamy fragrance of starch on cotton. I used to watch Mother take the tip of the silver triangle and go around tiny buttons, pressing Daddy’s white Sunday collars. A strand of her hair slipped across her forehead as she warned me to step back. I brought my crayons and paper and drew at the old-fashioned school desk she put in the kitchen and that Daddy had painted gold. They loved gold. I liked hearing the phish sound the iron made after each burst of steam, as if exhausted from its labor.

I call everyone to the table and pull out a chair, the chair Mother sat in last Thanksgiving, and sit down.

I pour red wine into crystal goblets, given to Mother by her sister-in-law for a wedding gift some sixty-seven years ago. Mother never used them, but I’ve already broken one. We fill plates and my husband, our daughters and our guests all take hands, and we bow our heads in thanks.

I never knew I’d miss her so much.

***

~Carol D. O’Dell

Author of Mothering Mother, available on Kindle

Hold those you love dear–in your arms–and in memory.

Have a blessed and joy-filled Thanksgiving.

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My parents were prejudice and I know I’m not alone. When my mother began aging her inhibitions fell to the wayside and I knew that taking her out in public or having someone care for her who was overweight, a different color, or from another country was a free for all–who knew what shocking thing might leap from her lips? It made me nervous. My mother’s prejudice wasn’t something I expected to deal with as a caregiver.

As an adult child or a caregiver, how do you handle prejudice?

“Wheweeee! That lady over there sure is….”

“Mother!” I’d yell and try to change the subject.

I can’t even count how many times or how many places we were when my mother said something hurtful, embarrassing, or downright shameful.  I had to learn how to reign her in–or live in utter fear and mortification.

How to Handle Prejudice in Older People:

  • Realize they might not ever change. Love them as they are, but find ways to distract them and stand up to them when you really need to.
  • Be ready to talk over them, ask a question, change the subject, do something outrageous (but not offensive)  yourself.  Keep a mental list of ways to distract your care buddy–and be ready to move fast.
  • Get used to apologizing (boy, did I have to do a lot of this!). Something somewhere is going to slip and you’re going to have to clean up this verbal mess. Be honest. Tell them that your parent has always been this way. You hate it and you’ve tried and tried. Be real. Most people appreciate your honestly and feel for you.
  • If it’s really ugly, say it! Call your parent down in public. Say loud, “”That was inappropriate. You cannot and will not talk to anyone that way.” And then just as you would handle an unruly toddler–leave. Don’t let them enjoy whatever they were doing beforehand. Tell them that you won’t be able to take them out in public if that’s how they’re going to act–and then keep your word.
  • Be willing to do it all over again the next day or next week. Many times, even the strongest chastisement won’t stick–their minds are teflon and their wills are iron. Don’t let it get to you. Deal with it as a matter-of-fact and use every tactic you can to remedy the situation.
  • Create a plan–and stick to it. If you’ve hired a home caregiver or are dealing with health aides, nurses, or other professionals and your parent is saying or doing ugly things, create a plan with your care person. Ask them how they’ve handled it with other clients, see if you can find a solution but don’t let them continue to be demeaned. Do all you can to handle the situation with tact, firmness, and fairness for all.
  • Laugh at the craziness of it! I’m not belittling how awful this can be, but it sure helps if we realize we’re just dealing with flawed people who weren’t taught to be respectful of everyone and who have given into all the stereotypes and assumptions there are in the world. Most people are ignorant more than they are cruel–although ignorance can be plenty cruel. At the end of the day, laugh a little, love as much as you can, and know that you did all you could possibly do to behave as a person you’re proud to stare back in the mirror.

~Carol D. O’Dell

Author of Mothering Mother, available on Kindle

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Cooking for my elderly mom was a lot like cooking for a fussy toddler. She wanted to eat what she wanted to eat–and that could fluctuate at any given moment. I tried to make her happy, I really did. Caregiving and cooking is a daily challenge, not to mention a battle of the wills. Little Debbie’s and Klondike bars were about the only thing that would make her face light up into a smile. I used to let it get to me, then I figured hey, she’s 92 years old–she has earned the right to eat what she wants! Besides, I should worry (focus is a better word) more about what I’m eating than what she’s eating!

While I didn’t blame her for going for the sweets, (who wouldn’t?) the problem was, I did the ole’ “one for you and one for me.” Before I knew it, I had gained over 30 pounds! It took patience and experimentation, but I finally learned how to cook and eat in a healthy way–and still fit it in with my crazy chaotic caregiving day.

Tips I Learned About Cooking and Caregiving:

  • Get a couple of sizes of Calphalon pans (not the nonstick type–avoid Teflon for health reasons). It’s quick and easy to pan cook your meats such as fish, chicken, pork or beef–for fast cooking and so you can do several things with your chicken breasts, pork chops, etc.
  • Start the day with a good breakfast. Yes, I sound like your mom did when you were a kid, but it’s true! Not only do our elders typically enjoy breakfast food, they tend to be hungry first thing in the morning–and breakfast is an easy clean up meal. Go for eggs or oatmeal, always have some fruit, and even enjoy a slice of bacon (it’s actually not too bad for you!)
  • Consider eating a hearty lunch–or even doing the whole 2 meal plan. I grew up with retired parents and we ate breakfast at 10 and dinner at 4. It worked out great–and clean up was early in the evening.
  • Take that chicken breast you’re cooking for mom, cook some rice in some chicken stock, add a few carrots, a slash of parsley and garlic, ( found my mom got to where she didn’t like spices that much) chop that breast into easily chewed pieces and your mom has a hearty and comforting lunch/dinner.
  • Take the second chicken breast and chop it over a bed of greens (by that, I mean spinach or kale–go for the hearty greens) chop some red peppers, purple onions, boiled egg, some feta or goat cheese and you have one great salad–mix a bit of dijon mustard with a splash of balsamic vinegar and honey, heat it 20 seconds in the microwave and you have a great hot dressing. If it’s winter and chilly, saute it in your pan for a warm dinner and serve with a sweet potato–and you’ve got one nutritionally packed meal.
  • K.I.S.S. Keep it Simple, Sweetheart. Any great chef (such as my hero, Tom Calicchio of Top Chef) will tell you, keep it simple. Use a few fresh, colorful, quality ingredients–and let the flavors wow you.
  • Get mom those 100 calorie snack packs for cookies (if you can stop yourself) and keep her snacks back in her room. If she stops eating her meals and is loading up on the goodies, either remove them or don’t worry about it. When you’re 90, do you still have to follow the food pyramid? Really? I think not…
  • Dinner should be the lightest meal of the day. That’s why God made canned soups. Enjoy tomato soup or black bean soup–and follow it with some Greek yogurt with a drizzle of honey in it. You’ll feel like you had dessert.
  • Take your vitamin D and other supplements–walk 20 minutes a day (2–10 minute walks are great) keep handweights nearby for a bit of strength training. Along with a decent night’s sleep (I know, not always possible!) and you’ve got the basics of a healthy lifestyle.
  • Think about yourself–a lot. Sounds crazy, I know.  But caregiving takes up so much of your time and energy–and that’s okay–but you’re responsible for what goes on between your ears. Buy books to help you with you. Go to the library and check out some health books of CD’s such as Dr. Amen’s Change Your Brain, Change Your Life.
  • Pick one part of your body and just work that out. Do lunges down the hall. Do 10 sit-ups (girlie kind, half way) a day-no more. If you like wearing sleeveless tops in the summer, then lift handweights while the commercials are on. Don’t worry about the rest of the package–you’ll have great arms!
  • Eat only what you love–but learn to love the good stuff. It’s almost cherry season and I have every intention on gorging myself  with fresh cherries. How bad can it be for me? They’re only good (and relatively inexpensive) for a few short weeks, so why not indulge myself in something that I love? My new favorite foods are Fage Greek yogart, goat cheese (I eat it on everything I can think of) and a great Riesling–I only have that once a week, but what a treat! Life is too short to fill my body with processed crapola. In the words of L’Oreal….I am so worth it! (paraphrase :))

It’s easy fall into the zombie mind of caregiving–but along with that comes in tow some baaaaad eating habits. Keep it simple. Learn to love the good stuff. And remember…good food, good family times–does life get any better?

Carol D. O’Dell

Author of Mothering Mother, available on Kindle

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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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