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Archive for the ‘dying’ Category

I finished my blog, “How to Live and Die Well” and while I meant every word, my sarcastic side was reeling.  Admit it, most of us will leave this earth kicking and screaming ( at least on the inside). We don’t want to eat our veggies as much as we’d prefer to dive into a bag of Lays, and aren’t there some days when you want to embrace your inner grump and blast the world? So here’s my comedy version–and on some/most  days–it’s a tad closer to the truth.

How to Live a Horrible Life:

  • Indulge my every whim–even when I’m repeating an already disastrous scenario that didn’t exactly work out the first time.
  • Refuse to forgive–especially myself.
  • Hold on to, nurse, and even embellish grudges, past hurts, and assumed wrongs.
  • Accuse others of stealing from you, talking about you, disliking you (which they probably do by this point) because that further endears you to folks.
  • Watch lots of television.
  • Buy a scooter. Walking is for sissies.
  • Try and force things to happen. It’s exhausting and not trusting, but it’s based on believing that I’m actually in control–of anything and everything.
  • Keep that inner monologue of self-doubt and self-loathing going 24/7.
  • –while simultaneously blaming anybody and everybody else for my crappy life.
  • Get too little sleep, indulge in too many processed foods/sweets, and take a pill, any pill, all the pills I can find–for everything from a hangnail to hemorrhoids.
  • Never do anything that’s not for my own direct benefit.
  • Give up, give in, and then complain about how nothing ever works out for me.
  • Never say thank you.
How to Die a Horrible Death: 
  • Repeat the above steps for the next 40/50 years.
  • Get more demanding and grumpy with each passing year.
  • Threaten that “I’m going to die soon, so please just do this one thing for me,” to get people to cater to your every whim.
  • Go to a doctor for every little thing and take all the meds and all the free med handouts they give me.
  • Read lots of articles about horrible diseases and become convinced I have them all.
  • Push people out of the way with my cart and mumble “Move it, I’m old!” (my mother used to do this)
  • Become incontinent as soon as possible…
  • because we all know that our family members just LOVE changing adult diapers.
  • Insist others feed you and then let the food dribble out on your chin and down your shirt–your family will be sure to love that one, too.
  • Become so cantankerous that even the grim reaper doesn’t want to spend time with you.
  • Refuse to “go to the light.”
  • Fake your death scene–clutch your chest and gasp for air–just to get people all crying and worked up. Then yell, “Surprise!” (Facetious, I know, but don’t you want to try it now?)
Yeah, I’m having a bit of fun, but this list just might help keep me motivated.
I’m working on my Oscar-worthy death scene now….
Have some to add? Send ’em my way and I’ll add them to the post.
In the meantime, happy living!
Carol D. O’Dell

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There came a time when I knew my mother was dying. It wasn’t necessarily a physical symptom, it was a gut feeling. I was scared–even frantic. How do I do this? If you’re a caregiver it’s likely that you will eventually face the last turn in road. Your loved one will entering the dying process and as death draws near you may call or be recommended for hospice.

I felt sad, cornered, overwhelmed, grieving, angry, panicked, even numb, and if I’m really honest–almost relieved. I was not only losing my mother, I was losing a part of me.

How do you know when the end is near?

Do you wait for a doctor or nurse to tell you?

Do you check into the hospital?

Who do you call–what do you next?

All I know is that I had been caring for my mother for a number of years. I was the one who fixed her meals, bathed, her, listened to each breath, monitored everything from her moods to her medicine.

When no one else knew–I knew.

I asked the doctor if we were ready for hospice. He hedged. A few weeks later, I insisted.

Hospice came in and although my mother qualified they didn’t think that death was imminent. Still, something in me knew it wouldn’t be too much longer.

Mother rallied–I felt duped–then she plunged again. In less than six weeks from the time I made that call my mother took that last turn. For three weeks or so, she lingered. She forgot how to eat–and I let her. By that I mean that I chose not to insert a feeding tube. That’s a highly personal family decision, but it was the right one for us. It wasn’t an easy decision by no means–and I knew I’d be the one to witness every breath, every moment. And I took on that role willingly.

I received one of the greatest gifts of my life in those quiet, grueling weeks. My mother taught me how to die. She gave me front row seat–something not many of us in our modern society gets the privilege of witnessing. But I ask, how else will we learn?

How do you know when the end is near?

It’s instinctual, guttural, spiritual, biological–but you’re also subconsciously weighing every piece of information you’ve gathered–as spouse, daughter, son, or friend. You’ve been there all along and even if you’re not medical, you know when a shift has occurred. You’re picking up on cues you’re not even aware of.

Trust that you may know before anyone else knows–and you might not be able to explain why.

In the end I was fully present. Scary–yes. But the frantic fear was gone. It was tough beyond words, but it was also good–necessary–and for me, holy.

Few of us have another way out of caregiving, especially for our elders. We all must die.

Knowing the end is near is a rare gift–one I’m profoundly grateful for.

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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“I quit!” I said it more than once when I was caregiving my mom.

And I meant it–the only problem was, I couldn’t figure out what to do with her if I didn’t care for her!

I was an only child. Her sister was older than she was–and her children were taking care of her. I tried to find a care home that wouldn’t break the bank and offer decent care. I couldn’t find one–I was at the end of my rope. (I know more now about how to find care homes and financial possibilities than I did back then).

I felt stuck. My mother was in the darkest trenches of Alzheimer’s. She was mean, didn’t know who I was. She’d try to hit me, kick me, fall, refuse to let me help her. It was rough and the truth was, there was no one but me to do the job.

 I told my husband “I quit.”

 He said, “You can’t.”

Easy for him to be honorable. He got to go to work each morning and leave me in the house with…her!

I “quit” more than once. At least saying it felt freeing, and for a few minutes I could imagine myself not caregiving.

I so wanted to walk out that door, but I knew I couldn’t leave my mother to my husband and children. They didn’t deserve that. I dreaded each day. I resented my family for getting to walk out the front door to jobs and school. It wasn’t pretty. No one wanted to be with me or engage me in conversation–not that I blamed them.

In some ways, my family kept me “honest.” They pitched in, rubbed my back, made dinner, took time to be with my mother so I could nap or stare into space. It was a time in our family that really tested us and showed me how much we needed and supported each other.

Where do you go from”I quit” when you can’t quit? 

There’s pretty much only three choices:

1. You either get help and lots of help (I had help, but keeping help that really helped, well that’s another post).

2. You find a care home–and as I said, you do have more options for free, low-cost, etc., but you need to ask for help and do your research–the care home can help guide you, but don’t just take their word. Check with elder-affairs and other state and community services to fully understand your options.

3. They die. Sounds harsh, I know. But what happened in my situation is that soon after this incredibly dark place, my mom lost her ability to swallow. I considered a feeding tube but decided that at 92 with Parkinson’s, Alzheimer’s, and heart disease, that keeping her alive through a tube wasn’t something either of us wanted or needed. This occurred over six months or more, but I knew I had to see this through. It was a grueling time for all of us, but a necessary closure.

My decision to not use a feeding tube was not easy by any means. I grappled with this, if this was right, ethical. We brought in hospice, which I was surprised actually supported my decision. I worried about what others would think. I struggled with what this would do to my mother–if it would hurt–would she know? Would she be confused?

Saying “I quit” helped lift the little stopper off the pressure cooker. I had to say it several times–like a drowning man who’s more flailing than drowning–but then it became serious and I really was gulping water.

Seeking solutions (even if they didn’t work out or only helped for a short time) felt like action.

Having others (my family and friends) support me, reach out, and offer their arms to hold me convinced me I wasn’t alone.

And yes, there is a time to find that care home, to admit you’re done for, to allow them to die–if that time has come. Good old Ephesians was right. There’s a season for everything. No wonder this beautiful prayer was offered so long ago:

To everything there is a season,
a time for every purpose under the sun.
A time to be born and a time to die;
a time to plant and a time to pluck up that which is planted;
a time to kill and a time to heal …
a time to weep and a time to laugh;
a time to mourn and a time to dance …
a time to embrace and a time to refrain from embracing;
a time to lose and a time to seek;
a time to rend and a time to sew;
a time to keep silent and a time to speak;
a time to love and a time to hate;
a time for war and a time for peace.

ecclesiastes 3:1-8

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You weren’t born a caregiver, although it might feel like it. This morning, I noticed that a bright orange Crepe Myrtyle leaf lying on the grass. Fall is on its way. Yes, I live in Florida, and yes, it’s still hot–but it feels different than a few weeks ago. The click in the gear has already begun. The seasons are changing. Caregiving is like that leaf. It comes in seasons, and you can’t fight the seasons life gives you no more than I can glue that leaf back on its branch, paint it green and declare it Spring. 

Some people seem to care for someone most of their life–a sibling, their alcoholic parent, their co-dependent spouse. It’s not that we mean to attract it, but for some, caregiving is a recurrent theme. For most, caregiving is something we’ll do more than once in our lifetime. But I do know this: You won’t always be in your caregiving role.

You weren’t always a caregiver, were you? You were a child, a teenager, a young person–in college or with a new job-career. You fell in love. You traveled. You birthed children, raised them. Maybe you got a divorce, remarried, changed careers. Even though caring for others may have been a part of your life many times over, it didn’t completely sideline you.

So why should caregiving sideline you now? Yes. There comes a time, particularly in elder-care, chronic illnesses, or at the end of life, you need to stop everything else and just be with your loved one. There are times when another person’s care is all-consuming–time, emotions, finances…you name it and it takes it all. But that needs to be the rare occasion and for the least amount of time possible. Why? It’s not a healthy way to live. If you’re not careful, you’ll find that you’re living for and maybe even through someone else, and that’s not good if you do it for too long at a time.  

Think of it this way: Humans are capable of running marathons. We can exert great physical and emotional energy and do amazing things–for a short period of time. Our bodies have great reserves (and I believe our spirits do as well). They say we only use 10% of our brains and 20% of our body’s capabilities in everyday life. We have enormous reserves. We have to. When we need to tap into that deep well of energy, thought, and focus, it drains it very quickly.

Stress is like jet fuel–it takes a huge amount, so our stockpile has to stay stocked. Intense caregiving is a lot like a marathon–you really can’t expect your body to run 26 miles a day, every day.

I fought full-time caregving in the beginning. I was a sandwich generation mom. I already had a full-plate life. But my mom needed me–I worried about her falling, not eating, not taking her meds–that other people were having to do my load.

Even after we moved her into our home–I avoided her/caregiving. I’m not proud of that, but I just couldn’t be with her all the time. She got on my nerves, made me nervous, however you want to put it. It took time–I felt judged, watched, consumed by an all-present mother-figure. She certainly had no qualms about stating that she was in charge. It took time, but we learned how to live together again.

Caregiving allowed me to dance around, dip into, and even avoid it for a season, and then the seasons changed. I couldn’t leave my mom with my husband or children (they were teens and quite competent). She was too emotionally volatile and her medications and needs were too intricate to explain. One by one, my activities dwindled. Death was like an intrusive relative who moved in with way too many bags and set up housekeeping.

The last year of my mother’s life was a series of secessions, and from March until June, I did nothing but watch my mother die. Each week got quieter. Each week I gave up a little more of the outside world. At first, I was angry and scared–death is an unwelcome and rude guest. As time went on, I learned how to let my family go on about the business of living–jobs, school, boyfriends, and part-time jobs. I became comfortable with the fact that I was supposed to spend these last months by my mother’s side. Like a circle that kept growing tighter and tighter, I drew close to her.

It felt like she’d never die–only continue dying. The last few weeks were grueling, and now I know the meaning of that word. It’s not that I wanted her to, it was just so painful, so quiet, so intense…

And then it was over. The funeral home people came, took her body, and I walked back in her room, her empty room. I’d never felt so lost, so unhinged, so exhausted and depleted in every way.

Getting used to that space in my life–that caregiving space that was now an empty room with empty hours with empty purpose–it was such a void and it took time and being tender with myself. I’d lost my mom. Who was I now? What was I if I wasn’t a caregiver?

New seasons came. I returned to college. Helped one daughter get married, two off to college. I wrote a book. I now travel and speak and teach. More seasons to come.

If you’re just starting caregiving and wondering where this will take you, how long you’ll be caregiving, try not to jump too far ahead–there’s just too many what if’s out there. If you’re coming to the end of your caregiving journey, hang on–it won’t last forever–and that’s a good and not good thing.

Currently, I’m not a caregiver, but I know that one day, that season will come back into my life. I’ll be out walking one day–I’ll look down, and there will be a crisp autumn leaf reminding me that a change is about to come.

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Medications lined up on the counter, canes, wheelchairs, hospital beds, portable potty chairs…at some point during the caregiving process your house stops looking like your home. It’s disconcerting in many levels: your loved one isn’t getting better, and it not only feels like you’re losing them, and on top of that, you’re losing a part of yourself as your house morphs into something unrecognizeable.

On top of that, your schedule is just plain wacky. Maybe you’re dealing with sundowning (when your elder loses their sense of night and sleep and actually gets more agitated and awake), or maybe you have a parade of home health aides or hospice personnel traipsing in and out all hours of the day and night. You appreciate the help, but it also means you have to stay dressed and be “on,” even when you feel like falling apart.

Then there are the endless doctor appointments, or maybe your loved one is in and out of the hospital or rehab. You barely get a decent routine established and bam, a month in the hospital and you have to start all over.

I experienced all of the above and I admit, I wasn’t Miss Keep-a-Perfect-House to begin with.

My mother was such a control and clean freak that it turned me off when I was a kid. Years later I figured out it was a personality difference: the structure she created made her feel safe–and it made me feel smothered. As an adult I had finally learned how to live in my own harmony–but then caregiving my mom with Alzheimer’s and Parkinson’s came into my life–along with raising three kids and a marriage–and trust me, order flew out the window.

Yeah, I used to beat myself up all the time about the sink full of dishes or the laundry not put away–oh and let’s not forget the dog hairs that clung to bottom of the toilet base (I hate that place!), or the piles and piles and piles of paperwork on my desk….

But I tapped into a different way of thinking that made me feel a whole lot better about myself.

If you brought me into a horribly messy room and told me to clean it up, I’d feel overwhelmed, avoid doing it, believe it would take me weeks to make a dent, or simply rebel.

But…if you brought me into that same horribly messy room and asked me if I could make it beautiful, my Geiger counter would go off the chart.

I would think along the lines of color, style, symmetrical and asymetrical lines.

I would think about what should go on the walls, and what should be put away. 

I would immediately recognize art pieces or family moments in the room that could and should be highlighted.

I would be excited and couldn’t wait to get started.

So I used that principle to get excited about aspects of caregiving.

After we called hospice, which of course was extremely hard and scary, and after I accepted that fact that my mother’s time on earth was limited, I began to look at her room and how I wanted it to “feel” during the last months of her life.

First, I decluttered. My mother liked more “things” than I did–knick-knacks–everything from garage sale goodies to valuable antiques and a gazillion family pictures crammed into her tiny apartment we built onto our house for her. I began to get them out of the way. I knew that we were literally fitting about 4-5 new people into our lives each week: a nurse, a home health aid for baths, a chaplin, and family and friends who would come by to visit. We needed space, and I needed to think straight.

Next, I put up a lace curtain over her bedroom window. She already had blinds, but I envisioned her lying peacefully under the morning sun and the lace curtain moving gently on a breeze. Poetic sounding and maybe even a bit sappy, but I needed this vision of beauty, especially at a time like this.

I put up one of those easy stick flower borders in her bedroom and brought in my favorite lap blanket and a few books of art and poetry (Mother’s Bible was already there, and a picture of her mother she had grown attached to) my journal, and a small vase of wildflowers so that when I was sitting with her, I had a bit of my creature comforts nearby.

Things were feeling better. I had created my own sense of order (the papers were still piled on my desk, I assure you), but I had focused on beauty, and for me, that brings joy and peace and was at a time when I desparately needed a little bit of both. 

Did my mother notice? I’m not sure, but this was for me. This was so I could sit and hum a familiar song, swab her mouth with Vaseline and wipe her face and arms with a cool cloth. This was so I could do all the things I needed to do.

My mother was pretty out of it those last few weeks (the end of Alzheimer’s had caused my mother to forget how to eat and eventually swallow). But I noticed that the more I made this a haven for me, I didn’t dread sitting next to her. I could sit with a cup of tea, my blanket, my journal, and read her a Psalm, look out the window with the lace curtain, and be present in this very important time in our lives.

What motivates you? What helps you think clearly and move easily?

Do your surroundings resemble a hospital ward or a home?

What makes you feel safe?

 What’s your idea of order–or beauty? It may be very different from mine, but I hope you find yours.

~Carol O’Dell

Author, Mothering Mother: A Daughters Humorous and Heartbreaking Memoir

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Caregivers are feeling the pinch just like everyone else, but there is a difference. Many caregivers are used to caregiving on a dime. They’ve been on a “controlled” budget for years, and yet they may be reeling from their shrinking savings, or a recent change in insurance coverage that leaves them short. Another worry. How can caregivers make ends meet and not compromise case for their loved ones?

I don’t know about you, but I grew up with two very saving people. My parents were married in 1929 (and we all know what happened that year, managed to find jobs through the depression, then Daddy fought in WWII. I’m one of those kids that grew up with stockpiles of canned goods in every closet.

My mother was the original recycler–bread wrappers, aluminum foil, buttons, shoe strings…you name it and it got reused. But when my mom got Alzheimer’s and I became her caregiver, let me tell you, all that worrying and hoarding turned ugly. She fixated on things (part of the disease), and sadly, fear and worry grew with age. Being a sand-gen mom meant I had to keep everybody going–meals, laundry, meds, doctor appointments, kid’s needs filled my head and my heart and my hands. As it should be.

I’m not going to insult your intelligence by telling you to clip coupons or turn lights off in unused rooms. You know to put extra water in your soup and buy day old bread. I’m more concerned you’ll take “saving” too far and not get the things you really need.

It’s not easy, but I want you to know that you can do this. You can figure out how to handle your finances even in this tough, crazy time.

Caregivers possess a very important skill: ingenuity.

We’re problem solvers par excellent. We’ve had to figure out how to budget our time, our strength, our groceries, and even our sleep. And if you’ve gained a skill in one area, you can transfer that ability to another area.

So I’m going to give you some strange advice: Don’t go crazy with cutting back.

Why?

Because you have enough on your plate.

Because you’re probably already pretty saving.

Because you already have enough to worry about.

Because it’s best to concentrate on one or two areas where you really can save or get help.

Because your loved needs you to care more about your relationship than saving six bucks at the grocery store.

Because time is precious–even more precious than money. 

It’s easy to get caught up in the frenzy you hear in the news. It’s easy to panic. But panic won’t help. Turn off the news. Put on a CD, some music, a book on tape–whistle, call a friend.

Your role as a caregiver, (which also means you’re a spouse, a daughter, a son) means that you don’t get to freak out. You have many hats to wear. Your job is to keep the big picture in perspective–managing everything from your home to your health, from your loved one’s health (including mental health), and even dealing with issues of the dying process–grief, hospice, and death. You have to know when to forget the world and just hold hands.

If you’re considering doing without something–lights, heat, filling up your car with gas, renewing your license, foregoing that doctor’s appointment, or eating red meat–ask yourself this question: Can I live with the consequences of doing without this? If the answer is no, or it’s really taking a chance, then it’s not worth the risk. You can actually wind up spending more money by doing without something necessary–and then trying to play catch up.

 Caregive on a Dime:

  • Is your car older and paid off? You might want to consider changing your coverage and drop your comprehensive coverage. Your insurance will go down, but realize that if your car is stolen, vandalized or weather damaged, it won’t be covered. You’ll only be covered if you “collide” with another car. 
  • Ask your doctor before changing your prescriptions to the generic version. Why? Not all geriatric meds work the same. I know someone who had a reaction when switching to generic–it caused major problems. 
  • Ask. Ask your bank if you should refinance (assuming your home isn’t paid off). Ask for a discount. Ask for assistance. You’re entitled to services you probably don’t even know about. Call up your senior center or your elder affairs office and start asking for help.
  • Consolidate houses, cars, and incomes. More and more families are doing the multi-generational living thing. It makes sense–brothers, sisters, ex’s, and parents are all figuring out ways to live together.
  • Ask if you qualify for any prescription programs or trials. Ask your doctor, your pharmacist, or your elder affairs office for more details.
  • While coupon cutting and sales can help, a caregiver is stressed for time. Don’t kill yourself driving to three stores to get your basic groceries.
  • You can get free or reduced price supplies for adult diapers, food supplements, and other home health aid products. Check at www.qualityeldercare.com, or www.elderdepot.com, or  www.agingpro.com. Keep asking and keep looking for what you need.
  • Choose to be happy right where you are. Live small, but find ways to give yourself a few creature comforts.
  • Watch out for depresssion. If you’re on a tight budget, it’s easy just to hunker down and try not to move–but that’s not healthy. Be sure to do the simple things–take your vitamins, stretch, call a friend, and get outside at least ten minutes a day for that very necessary vitamin D.
  • If things get mad, make some noise. I call it having a “Shirley MacLaine Moment.” Remember Shirley in Postcards from the Edge when she lets loose on the nurse in order to get pain medication for her daughter? Sometimes you have to let loose. Yell, demand, make noise. Don’t suffer in silence. Don’t cave in and give up. Don’t go hungry or do without needed medication. Call up a local church, shelter, senior center and tell them how bad your situation is–oh, and don’t forget those relatives you rarely ever hear from–call them too. But don’t cry wolf–a lot of people are in dire circumstances–and you may only get one shot at help, so use it wisely.

Keep life simple, appreciate life, and keep it all in perspective. You’ve lived long enough to see good times and challenging times. The only constnat is change. Please know that there are people out there who care, so don’t sit behind your front door and give up.  Hope is your greatest weapon. Hope is food for your soul.

~Carol D. O’Dell

Author of Mothering Mother

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