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Archive for the ‘pallative care’ Category

“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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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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I’m a keeper. I didn’t know I would be, but I can’t imagine parting with Daddy’s jacket.

It’s brick-red suede, and has completely worn through at the edge of the sleeves. It no longer smells of him, but I keep it.

I remember when I was a child, riding with him to Sears on Saturday morning just to buy salted peanuts and look at the tools in the tool department. He wore that jacket. I was adopted and maybe that makes me more sentimental, I don’t know, but keeping my past is important to me.

I also have his Bible, his wallet, his watch, his glasses, and a yellow shirt I remember him in.

I have lots of items that was my mother’s–her mink coat, her Russian coat, purses, jewelry, a Sunday suit, and more Bibles. (My mother was a preacher, so trust me when I say she had lots of  Bibles).

I also have their photos, letters, recipes, Daddy’s old tool chest, the first gift he ever gave her when she was just 14–it’s a small cedar box that’s in the shape of a heart. If  my math is right, he gave it to her in 1925. I can tell the story of  how they met as if it were my own.

Why do we keep our loved one’s clothes?

Like a child’s ratty blanket, we hold on. Safety, security, identity.

Our momentos are in boxes, on shelves, in cabinets, and I know I keep way too much, but how do you let go of such things?

It’s all I have now, and I believe that by pulling out Daddy’s coat or by pinning on one of my mother’s broaches, I can see them clearer, remember better. 

I remember Daddy’s bushy eyebrows, the thickness of his fingers and how I could barely squeeze my child fingers through his. I remember that jacket and how he’d wear it when we went to see his family–his sister and brother every Sunday afternoon. His faithfulness amazed me then. His loyalty and tenderness is something I value in a man.

There are issues with keeping things. Psychologists might tell you that you’re not moving on, not making room for the new. I understand the logic. A friend recently visited my home. I hadn’t seen her since my mom was alive and she commented on how much my house had changed. My mom’s antiques are no longer on display. Some have been give to other family members, others sold.  This is a slow process–for me.

It no longer looks like my mother’s house. After moving my mother and her 40 years of not moving, her collections oozed out of every crevice.  I barely had room for “me.” My mother was one powerful woman. She had a way of taking over.  I let her reign, so to speak. As her daughter and in those last few years, caregiver, I learned how to hold my ground and still allow her to feel as if she had some independence. 

But now, I have a new couch, a new dining room table.  Her furniture has been divvied up among my daughters. I’ve reclaimed my throne, so to speak.

Ironically, I consider myself more of a futurist than a person who lives in the past. I lean toward modern/eclectic design and  and music and I’ve made a slew of six month, one year, five year, and then year plans, always writing my future. I’m a list maker–a list for the day, the week, the month, sometimes two a day. I like noting the little things I’ve accomplished. I’ll write something down I just thought of just to get the thrill of crossing it out.

But when it comes to my parents, I’m a keeper, but it no longer keeps me  in the past. I’ don’t think I fall iinto thecategory of  “not moving on.”

I like to think of their clothes and personal items as a cushion to my life. As if they somehow support me and connect me. Just one look at that jacket and I’m four again. No other Bible comforts me like Daddy’s. I don’t need to even open it to feel a sense of guidance.

It takes time to get to a place to let go of at least a few things.

After your loved one dies, part of grief is when you still try to live in your old life with old clothes and the way things used surrounding you. 

You weren’t ready for him to die. You don’t want to date, get a new job, or have to figure out what to do with yourself next Christmas. You don’t want to move on.

 Some people get rid of things too soon. Others, too late–it’s different for each person. Finally, you begin to make your own way. Reinvent yourself. Find who you are–now. They are in you, a part of you, but you are changed. You have to go on.

What’s the time frame? Varies. I know people who were clearing out closets before the funeral. I know others who open a closet ten years later–and there’s everything just as it was.  Of course, there’s always a chance of getting stuck and not being able to let go. You run that risk.

For many, somewhere around or after that first year mark, things shift–a little. You don’t have to make yourself do everything. Some things come a little easier. A little. For others, it’s two, three years before they can feel anything but blinding loss.

But somewhere along the line, you let go of a few things. You call up a family member and offer them a book or a knick-knack. You sell something, drop items off at Goodwill or another charity.

You live with the empty space for awhile before you figure out how to fill your life again. And  the items you keep become more intended, more precious. They go in top drawers and the chest that sits in the guest bedroom. You leave out a few photos, a book–a silver comb that sits on your dresser.

Your loved one is now incorporated. Their clothes, their memories are a part of you, in your house so to speak–but they have a place and not like a box you trip over whenever you walk into a room. Anytime you need to, you can slide open a draw and remember. Find comfort.  

And now, there’s also room for something new. 

~Carol D. O’Dell

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

Carol is a Family Advisor at Caring.com

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Are you afraid you won’t be there when your loved one passes away?
Take a moment and be with them now. Close your eyes and talk to them.

A friend called me tonight. She was upset.

Her grandmother had a heart attack–and it doesn’t look good.

She’s afraid she won’t get there in time.

The holidays are a tough time to add grief and worry to the mix.

Not that there’s a good time for a loved  one to die, but it just doesn’t seem right when it’s the holidays.

This is supposed to be a happy time, right? A time for family.

If only disease and death were that courteous–to give us a few days a year of peace.

But unfortunately, it may come at a time when everything in you says, “no, no, no.”

I had a talk with my dad in the middle of the night. I had dreamed about him. I don’t even remember now what the dream was about.

He was having yet another heart surgery–and I woke up–the dream had been so vivid. So, I got up, and he and I had a talk.

Daddy didn’t die for another eight months, but this experience was so real, and ever since, I’ve been so grateful for that quiet time with just the two of us.

 

I listened and suggested that my friend take a few minutes alone and talk to her grandmother.

You can’t always control timing. You can’t always travel–so don’t wait to have that heart-to-heart talk.

Time, distance, disease, loss of memory, and even pain…our prayers, thoughts, and love can transcend all these barriers.

Don’t wait until you get there–planes and cars take time–the power of love is instantaneous.

 

If you’re in this situation, I hope you’ll take a few moments.

Tell them you love them.

Tell them it’s okay to let go now..

Tell them you’ll be okay.

If you need to, ask forgiveness–and accept forgiveness.

Thank them for who they are to you, what they mean to you.

Accept this experience into your heart. This is just as real as if you were to physically be in their presence.

Be at peace.

If your loved one passes away before you arrive, then you’ll have already said what you needed to say.

~Carol O’Dell

Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

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

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

He didn’t exactly have a cushy life.

His mother died when he was nine, and although his family could barely survive, young Lincoln gave up hunting after watching a turkey suffer after he shot the bird(the bird thing is a side note, but I found it interesting).

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

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

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

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

(Other great quotes by Lincoln )

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

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

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

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

According to the Princeton online dictionary, happiness  means:

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

Where did the word  “happy” come from?

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

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

How does it relate to caregiving?

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

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

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

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

Happy for no reason. Let luck and chance blow in like a surprising summer rain. Trust that it’s all meant for the good.

Right now, with all the economic challenges we face individually and collectively, I feel like I don’t have a choice–either crawl in the bed and pull up the covers (indefinitely), or keep an eye out for bright red birds and all the amazing small wonders that surround us.

Carol D. O’Dell

Author of Mothering Mother, available on Kindle

Family Advisor at Caring.com

www.caroldodell.com

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Most people, in fact 85% don’t want to go into a nursing home–that’s what they used to call them.

Many of our seniors cringe at the word and imagine long, dark halls, people screaming, sitting in soiled diapers, horrible food, and being abused. Thank goodness, this is not the norm–and there’s more vigilance to report elder abuse and substandard care today.

According to surveys done by AARP, most of us would prefer to Age in Place–meaning, stay in our homes  and augment care as needed–a mix of family caregiving, professional caregiving services, adult day cares, and other elder-care community based resources.

I highly recommend staying at home, including various elements of family caregiving, paid care, and community care–but I do know that there are times and circumstances when this just isn’t enough.

What Are the Different Kinds of Care Facilities–and Which One Is Right For my Loved One?

Contining Care or Graduated Care is when you buy into a community in which you can choose your living condition (small home or condo at first), and then “trade” it in when/if your care needs increase. Within one “complex” you might see homes or duplexes, condos or apartments, a building (care facility) that houses many units of care, and all these may be near a hospital or hospice facility. These are usually a large development and can offer meals, hired care workers, transportation, activities, and other amenities.

Assisted Living is similar and can be a part of graduated care. Assisted living can be houses/duplex, condos/care facility where the person has their own apartment but has access to additional help. There may be a place for meals, a van for transportation, and non-skilled care workers can be hired to do various needs and levels of care. Some assited living and care facilities are individually owned while others are a part of a larger corporation.

Care Facility or Skilled Nursing Care is considered a full-care facility and is what people think of when they say, “nursing home.” They can be a part of other facilities, such as the continuing care, or assisted living home, but they have the added component of a skilled nursing staff (RN’s–registered nurses) as well as non-skilled care, usually called CNA’s (Clinical Nurse’s Assistant). Care facilities are for people who have medical needs, have severe mobility issues (can’t walk, falls), and need supervision as well as medical care. They often have a staff of doctors and other care workers who will come to visit them, prescribe medications, and offer in-house treatments such as physical therapy.

Memory Disorder Facility or Center can be a part of an assisted living or care facility and focuses on the needs and care of people with neurological disorders such as brain injuries, advanced Parkinson’s or Lewy Body, Alzheimer’s and dementia.This facility has the feature of secured doors and exits so that people who tend to wander can’t leave. They specialize in dealing with the behavoiral, psychological and physical issues that come with neurological disorders. Since this is an area that overlaps, many of their clients need medical care/skilled nursing care/visiting doctors, etc.

Rehabilitation Facility is usually a short term facility that focuses on people recovering from surgeries, accidents, and for those who need various care treatments such as physical or occupational rehabilitation therapies. They are a “half way” facility people go to when they’re not quite ready to go home, or need more care than a graduated or assisted living facility offers. Most rehabilitation facilities are corporate owned and work closely with hospitals and doctors. 

How Do I Assess If My Loved One Should Go Into a Care Facility?

  1. They choose a graduated/continual care or assisted living on their own.
  2. They have no family nearby and no one can or will coordinate their care (don’t forget how helpful geriatric care managers can be in figuring out various stage of care and evaluating care facilities)
  3. They need full-time care, perhaps with needs of skilled nursing care as well–and this has become too much to manage for a loved one to deal with.
  4. Their dementia/Alzheimer’s has increased to a level to where they’re not manageable at home–violent, escapes, can’t be managed by one care helper–needs more supervision, medication, and physical control than the family/and caregivers can provide.
  5. Are at the late stages of various diseases/aren’t mobile/and the family can’t manage their care–perhaps hospice is involved and there are end of life and palliative care needs (pain management).
  6. You, the family caregiver simply can’t do it anymore–your own health or finances are falling apart and you’ve done all you can.

There are valid reasons for your loved one to enter a care facility.

You have not failed as a caregiver–nor are you “done” when your loved one enters a care center/facility.

Your loved one needs you more than ever to oversee their care and make sure they are safe, respected, and receiving all the care they need and deserve.

Also know that the first care facility may not be your last one–it may not be a good fit, you may have to change and try a different one. Also, as time goes on and their care increases, you may have to move them again.

Don’t forget that hospice and palliative care is still needed (and must be asked for) to supplement their care at the end of life.

You may also consider letting them come “home” to die.

You  have many options.

Helpful Links:

Great article:

newoldage.blogs.nytimes.com/2008/07/14/faced-with-caregiving-even-experts-struggle/  

~Carol O’Dell, Author of Mothering Mother–an Amazon Bestseller in Alzeimer’s and Aging Parents.

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Alzheimer’s is a tough diagnosis.

Many people hear the word and instantly get an image of their loved one completely uncontrollable–who no longer knows who they are.

It’s worse than any horror movie.

Recently, at a caregiver’s conference I started my talk about my caregiving journey–and that my mom had Alzheimer’s. A woman jumped up out of her seat, let out a cry, and ran out of the room. The director followed her out the door.

Later, the director shared that the woman’s mom had been diagnosed with Alzheimer’s, and this was the first event she had attended. This was the first time she was admitting to herself that her mother had Alzheimer’s.

Why is it so scary?

Because Alzheimer’s, like cancer has a ripple effect.

We’re afraid of what the end will be like.

We’re afraid our loved ones will suffer. We’re afraid of how bad it’ll get.

We’re afraid it might be in our genes, too.

Afraid, afraid, afraid.

People are afraid they’ll get Alzheimer’s, and then if they do get it, they’re afraid of what the end will be like. That’s a lot of fear. I don’t know about you, but if I’m going to be mauled to death by a bear, then bring it on–cause worrying about it for two decades will kill me with an ulcer before I ever see a bear!

Getting that dreaded diagnosis means your life as you know it is over.

Really?

Is it all or nothing?

Does your brain, your personality, your purpose and dreams all fall out of your head the second the doctor utters this terrible word?

NO.

You (or your loved one) have probably been living with Alzheimer’s/dementia for awhile.

Life’s been pretty good, right? Sure–some slippage–some “what’s that called, what’s his name”  moments–but hasn’t there also been some quality of life?  

Does it mean as a caregiver that you will never see your friends, go on vacation, or make love–ever again?

No, it doesn’t!

Yes, it’s scary to say the word.

It’s scary to know that “it’s” in there. Lurking.

But you do have time.

You do still have a life and people you love. Nothing has really changed since yesterday.

I’m not saying it’s a picnic, my mother had Alzheimer’s and lived with us the last almost three years of her life, so I’ve seen this disease up close. But now that there’s such an awareness of Alzheimer’s, there’s earlier diagnosis–which means people are getting treated earlier.

Drugs such as Aricept, Exelon, Cognex, and Razadyne work well on many people who are in the early stages of Alzheimer’s. You can take your meds, and still enjoy so much of life.

What can you do if you or your loved has Alzheimer’s?

(It depends on age, stage, and other existing illnesses)

Get up tomorrow morning and have the same breakfast you had today.

Watch The Price is Right or go to the store. Keep on living your life.

Yes, you can take a trip. Go to Greece. Go to Rome. Do those things you’ve always dreamed of–but also know that your ordinary every day life has value.

Don’t feel lke you can’t go with a friend, your spouse and take a tour. You can. Take your meds, don’t over do it, but go!  So what if you forget the busboy’s name on the cruise ship. So what if you and your wife walk everywhere together hand in hand.

Just remember that having coffee on your back porch while reading the morning paper is pretty darn great too.

Get together with friends. Talk about your diasnosis. Get it on out there. Let them ask questions.

Let’s educate our loved ones. Let’s get over the stigma. Let’s show them that life indeed does go on. Enjoy dinner, enjoy eating out–crack a joke and watch everybody bristle as to whether to laugh or not.

Go for a walk. Your legs aren’t broke, you know. You don’t have to become a couch potato. If your finger can flip channels, it can surf the ‘net. Raise money for Alzheimer’s research or blog and share your journey with others. That’s what Terry Prachett is doing. He’s a well-known writer who has Alzheimer’s and he’s donating monies and bring awareness to this disease. You might as well use it to do some good in the world.

There are no guarantees for anyone–so why not have the best Christmas ever? Get that toy train you’ve always wanted. Take that family portrait with the kids, grand kids and great grand kids. Wear a Santa suit and pass out presents.

This is the time to video or audio record your life, your memories, your songs and stories.

Life is precious. Memories are to be passed on and held dear. So find the time when you are rested and clear headed to go ahead and yack and yack and tell all the stories you can think of–about you, your career, your adventures, your sorrows and your victories.

What if you’re forgetting more than you’re remembering these days?

Then spend this tender time with those you love. Tell them you love them–now.

Ask them to remember for you. Create a system of post-it notes, alarm clocks, and every memory helper gadget you can find. But more importantly, sit with your sweety, play with your dog–and just be present.

What if the diagnosis of Alzheimer’s comes after there’s much memory loss?

Then know as a caregiver that while your loved one may at times feel agitated and scared–Alzheimer’s is not physically painful. There is some pain at the end of life (but that’s related to the shutting down or bodily systems). The hardest part regarding pain is that late stage Alzheimer’s patients can suffer pain from another ailment and not be able to communicate it (such as a bladder infection, toothache, heart condition, etc).

Yes, Alzheimer’s is confusing (and that falls under emotional pain), I”m not belittling the ramifications of this disease and its impact on families in any way.

What can I do as a caregiver/loved one to help?

  • Be patient
  • Don’t get overly emotional–that’s scares them
  • Stay in charge–that makes them feel safe
  • Keep them safe
  • Take care of yourself, pace yourself–this could be along haul
  • Let them talk about deceased loved ones/careers/the war–and enjoy listening
  • Don’t get caught up in the million question game
  • Don’t take their outbursts seriously
  • Do what’s right and don’t let them manipulate you
  • Provide what they like as much as possible (likes will eventually fade)-food, music, art, sports
  • Introduce yourself and who you are–daughter, nurse, etc. every time you see them (If they’re forgetting who people are)
  • Don’t be offended when they forget who you are to them–even if you’re their wife of 50 years
  • Don’t take it personal if another person, animal, or inanimate object seems to make them happier than you do–it’s just this wacky disease
  • Know that they love you even when they can’t verbalize it
  • Remember for them. Write their stories, sing their songs, play the music they loved when they were dating
  • Keep a watchful eye on them in the hospital and care facilities–no one will pay attention and catch mistakes more than a loved one
  • When the end comes, give them your verbal permission to let go
  • Stay up beat. They need you more than ever

Don’t get me wrong–I’m all for falling apart, so you’ll need to fall apart every now and then.

But fall apart in the closet, in the shower, in the car. Scream, cry, beat the steering wheel. This is a mean son of…, and you have every right to be angry at this disease. That’s important.

Then go on. Occupy your thoughts with a song, a new recipe, the color you’ll paint your bedroom next month. Don’t abandon your marriage or your kids or all your hobbies. You need a life (however small it may seem to shrink).

Don’t dwell on this disease–that’s giving it way too much power.

It is what it is.

Eventually, you’ll reconcile yourself to Alzheimer’s. You will if it hangs around enough to absolutely wear you out. Reconciliation isn’t the same as giving up. It’s about allowing.

You can fight it–beat your chest and beg–but it won’t let go.

So laugh at the crazies, hug and hold hands as much as you can. Scream and cry when you need to.

Create your own village of support, and be “okay.”

I don’t know where you are–if your loved one just got the news and you’re still reeling.

Or maybe you’re in your tenth year and your mom’s in a care facility and she has absolutely no connection to reality.

No matter which case, you can’t get to any level of peace without going through the fire.

You will find your way. You will have a good moment, an allowing moment here and there–when life and your loved one–and all that you’re going through is ironically, “okay.”

Oh, and about the gal who ran out of the conference crying?

I met her–and her mom walking through the mall last Christmas. She introduced me to her mom–with tenderness and pride.

I’m Carol O’Dell, and I wrote Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir. It’s available on Amazon and in bookstores.

I hope you’ve enjoyed this blog and will visit again.

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Today, I switch roles from the caregiver blogging perspective to that of the care receiver–

specifically, the aging parent.

If you’re a caregiver/son, daughter, please read this post.

You need to put yourself in their shoes.

But I don’t want to live with my adult children!

I don’t blame you. Me neither.

(And I wrote the book, Mothering Mother–and my mom lived with me the last (almost) three years of her life!) But that’s my point–my mother lived on her own–with Parkinson’s and early dementia until she was 89 years old!

We’ll all be in this predicament one day–if we live that long–so we need to be empathetic.

My kids are grown, responsible, and we all love each other–and I still don’t relish the thought of permanently living with them! I am a big proponent of family caregiving–but do it when the time is right.

No one wants to give up their independence.

We like things our way, our household “rules,” TV shows, and favorite laundry detergent. Things seemingly insignificant choices give us a sense of autonomy and joy to every day life.

I don’t want to be a burden. 

I hear this a lot. I feel it on a personal level, but know that when it’s necessary–cancer, end of life, when it’s really needed, then it’s not a burden. It’s a privilege–

Ad you still have much to give.

Encourgement, humor, appreciation, family togetherness is a rare and precious gift and should not be under-appreciated.

I feel privileged to have children. And I know if/when I have to, we would all do our best to make it work. I’m grateful I have the option if I needed it.

There are many people who do not have children. Or their children are not able or willing to help.

No time for a pity party. Get busy! Use this as a catalyst to get busy doing just that–planning your life–for quality and purpose.

If you don’t want to live in a care facility (prematurely, and hopefully never) or with someone else–family member or not, then I (and you) better have a plan.

Note: Decide today to be okay how your life turns out–either way. Who knows what wil happen? 

Have you heard of the aging in place movement?

This July AARP released a new report citing that 87% of people with disabilities age 50 and older want to receive long-term care (LTC) services in their own homes.

The National Aging in Place Organization is about collaboration and education to live at home as long as possible.

Aging in Place includes building/altering your home so that you can stay there safely as long as possible.

It might also include a ramp, ample doorways and bathrooms for wheelchair accommodation, safe flooring, and even a space for live-in care. It’s up to each individual to make these arrangements to suit (by anticipating) their needs. This term is also loosely used to help individuals begin to plan for their future in terms of how and where they want to live as life progresses.

Aging in place might even include moving so that you are living in an area where retirement and aging is not only enjoyable, but that you also have ample resources within your community for the care you might need.

Or…it might include living close enough to your adult children so that they can easily check on you and manage your care without having to live with you. ( I know of three families in our neighborhood whose mothers/parents also live in another house in the neighborhood).

Recently, after Tropical Storm Faye, I saw one of the son-in-laws picking up debris out of his mother-in-law’s yard. At least he didn’t have to drive an hour or two to do this little chore–or worry about someone charging her an exorbitant price for a job that took less than an hour.

How to Arrange Your Life So That You Can Live at Home Longer:

(consider one or more of the following suggestions)

  • Move your bedroom on the first/main floor
  • Do a computer search or call your council on aging and get a list of all your community’s resources now. Don’t wait until you need help to start this process.
  • Consider redoing your main bath to accommodate a wheelchair/walker–and make your shower easy to get in and out of
  • If your spouse has passed away, consider a roommate. Finish a garage or basement if you’d like it to be more private and separate. This $10-20,000 investment (if it’s done well) could give you added years at home–you could even trade rent for care.
  • Be sure that if you choose to do this that you both sign a contract for renting, you get driver’s license info, run a background check and never ever give them access or personal/financial information.
  • Even though there are risks involved, having someone live with you or on your property can provide a certain sense of security, companionship, and allow you to stay home much longer than living alone.
  • Consider an alarm system if you feel you live in an area where you’re vulnerable to break-ins. Check with your local police to see if this is a common occurrence. Elders can be targets for easy crimes.
  • Don’t blab to every cable and lawn guy that you live alone. Always act like your son/nephew is in the house, coming home, on the phone. Even if you don’t have one–never let others think you’re always alone. Don’t be an easy target!
  • Consider “the button,” a monitoring device you wear in case you fall. There are systems that will call and check on you morning and night (of course, you pay extra for this), but it might give you and those who love you a peace of mind to know that you can call for help at any time.
  • Wear the thing! My mom was terrible about leaving it on a piece of clothing she wasn’t wearing, forgetting where it was–and caregivers, family members–if your loved one has memory loss, this may not help them. They won’t necessarily remember they have “the button” on, or even what it’s for!
  • Get rid of clutter now! Clutter can cause you to fall and gets to be a real hassle for those caring for you. Don’t leave this to your family to do later–give those sentimental items to your family members now so that you can see the joy on their face when they use their grandmother’s dishes or wear a family heirloom piece of jewelry
  • Gather all your important documents–insurance info, cards, prescriptions, life insurance, house insurance and living will. Place these items in a portable box and let your loved ones know where it is–for easy access. 
  • Do that living will now–don’t make your loved ones have to guess or fight over whether you’d want to be put on a ventilator or not. Be clear. Make several copies and give them to all the important peopel–one for you, your main doctor, the hospital you’re likely to go to, and one or two loved ones/guardians who would get to you quickly in times of emergency.
  • Get a recliner chair that can lift you out easily (consider this your next purchase when the current chair needs to be replaced)
  • Eventually consider a bed that is motorized–this added expense really helps if you have back problems and can sometimes be covered on insurance
  • Place tread on any slick floors inside or outside your house to avoid slipping
  • Remove any throw rugs that might trip you–(you may need to do this later or if you tend to shuffle)
  • Begin to think about your options if/when you can no longer drive–is there a senior van in your area? Friends/neighbors who you can ride with or will pick up a few items for you? Even consider a taxi–most areas have taxis (even if you’ve never used one in your area before, they’re probably there). Don’t sit at home and waste away–even if your eyes or your coordination begin to wane, you can still get out and enjoy life.
  • Continue to be a part of your local church/temple. Make friends–you need them, and they need you! Churches and community organizations are there to help. Let them. Helping others make us feel good–don’t be so stubborn and independent that you don’t allow someone else to give and feel good. If someone is willing to pick you up to take you to Sunday School or choir practice–let them~ You still get to go to an activity (which is good for you), and they feel like they’ve helped someone. Win-win.
  • Get to know your neighbors. You can all keep an eye on each other. Be nice to the kids in your neighborhood–they can rake your leaves or bring you the mail. Most children and even teens long for a grandparent and don’t get to see theirs enough. Wave! Smile, get to know their moms and dads so they trust you. Bake a cake and take it to them. Cultivate relationships. Old-fashioned neighborliness and friendship never grows old and is never out of style.
  • Choose where you want to pass away. Hospice offers you the choice to spend your last few months/weeks/days at home and can offer palliative care (pain management). Most people choose to be in their own home and to surrounded by those they love. Let people know now–most areas of the country have access to hospice. The diagnosis is that you have a life-limiting condition with a diagnosis or a year or less to live.
  • Don’t wait until the last minute–ask for hospice. Anyone can refer you to hospice (including yourself or your physician). Also know that many cities have more than one hospice with varying levels of care and options. Check them out to see what’s available to you.

Bottom line:

Plan now. If you’re over 50, then you better start planning. Having a 401K isn’t enough. It doesn’t take care of the details and quality of life–and money won’t fix everything.

Adapt your house to suit your aging needs.

If it’s not too late, and you need to, move closer to family so that it’s not hard for them to drop by and check on you.

And…or…live in a community that is “elder friendly,” with lots of resources.

Stay involved with people. Accept their help. Give back any way you can. A smile, a hug, homemade cookies will get you lots of friends. Neighbors are important. Do more than wave. You might need them one day.

Stay/get involved in church and other community activities. The more plugged in you are, the more people you have in your life, the more your mind/body stays active. Staying active will keep you at home.

No longer driving is not the end of the world. Figure out how to make it work–taxi, community van, church members/neighbors.

Consider a roommate or a family member living arrangement. Just be safe, sign a contract, and do a background check. ( I know of several nieces/nephews who are young and starting out in life by sharing a house with an aunt or grandmother).

Get help when you need it–hiring day-time care is cheaper than a care facility. There are many great companies such as Comfort Keepers who are licensed, bonded, flexible and reasonable–usually less than $20.00 an hour.

Wherever you are and whatever life throws at you–continue to smile, see the good, and find ways to give and receive love.

Carol D. O’Dell, and I hope you’ll check out my book, Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir, available on Amazon, other online stores and in bookstores. Kunati Publishing

I’m a family advisor on Caring.com, and my syndicated blog appears on www.opentohope.com.

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It doesn’t matter your cultural or religious background–it doesn’t matter if you’re wealthy or just barely getting by, there are three concerns at the end of life most people share.

They’re heard by chaplains, hospice workers and volunteers, and by family members who gather around those they love and try to make the last weeks, days, and hours of a person’s life as comfortable and as meaningful as possible.

 

Here are the three biggest concerns at the end of life:

  • I don’t want to be a burden
  • I don’t want to be in pain
  • I don’t want to lose control over what’s done to me

I don’t want to be a burden.

As a speaker/facilitator in the field of caregiving, I hear this concern all the time–and it starts long before the end of life.

In fact, I heard it from my 25 year-old daughter. She said she’d rather go into a care facility when she’s older because she doesn’t want to be a burden. It’s a sad reflection on society to think that growing older or needing help to get around is equated with being a burden. (I didn’t teach her this, by the way :))

There’s a lot not being said here:

I don’t want to be dependent. I don’t want to be vulnerable.  I don’t like others telling me what to do. I don’t want to be in the way. I don’t want people to resent caring for me. I’ve dealt with the elderly and infirmed and I don’t want someone to have to do, to sacrifice what I did. I’m scared. I

But what if you’re not a burden?

What if caring for you is viewed as a privilege?

What if you plan enough ahead of time and arrange for the added/needed help so that family members do less physical work and can simply “be” with you–enjoy your company?

What if you do all that you can do now–health wise–to be strong and mobile and live longer in good health? (there are no guarantees on that one).

What if you have something valuable to offer–even in your last years and months?

What if even your dying is considered sacred and something to treasure?  (even if it is hard)

What if, by allowing us to witness your end of life, we learn how to handle our own?

Who else will teach us?

I don’t want to be in pain.

No one does. Certain diseases cause more pain than others.

I can’t promise you that you won’t be in pain.

I can’t promise you that the end will come quick or be sweet–or even meaningful in the sense that sometimes we romanticize certain events and imagine them in a glowing, fuzzy cinematic light with all of our loved ones gathered and all getting along and tears and smiles and kisses and we can be coherent and see them all and hold this wonderful moment for all eternity…and it isn’t always like that.

I can tell you that hospice in particular will do everything they can to keep you pain free.

Palliative care is better than ever–there are all over salves that numb you, take away the aches, meds to reduce fever and chills–but many of these medicines will gork you out. You may sleep a lot. You may not be fully aware of time or of your loved ones coming and going. You might be pain free, but there might be a trade off.

All I can say is that by knowing this now, you can come to some level of acceptance. That’s all I can offer you–or me. I can’t say how I’m going to go–whether it will be many years from now or any day.

I can’t say whether the end of my life will be peaceful or tragic. I just have to trust–and do all I can to attract peace.

But I do know that whatever I believe about the hereafter, eternity, heaven…it will be that I will not be in pain. I will be in peace. I will not carry the pains, hurts, and sorrows of this world onto the next. And that brings me comfort.

I don’t want to lose control over what’s done to me.

Isn’t it amazing that one of the last questions/concerns we have before we leave this earth is about trust?

This teaches me one thing–I better get to dealing with my trust issues now.

Trust is the underlying factor that determines the success of any relationship–marriage, friendships, communities–it all boils down to, “Can I trust you?”

The answer isn’t “Yes, I can,” or “No, I can’t.”

Trust isn’t about finding people who won’t ever let you down.

Trust is knowing they will–in some way or another–and being okay with that.

Loving them any way. Trusting any way.

Choosing and then living in trust. Not trust in others. Perhaps it’s trust in yourself.

Trust that you’ll be okay. Trust that you don’t always have to be in control.

It’s also about trust in something bigger than you–in God, faith, the universe, the good–whatever you choose to call it. Trusting that goodness will come your way. Trusting that the universe is out to help you.

In the end, we all know that death will come. Perhaps there will be pain. Perhaps I won’t be able to say when it will happen, where I’ll be, who will be around me, what care I will or won’t get. And that somehow I can still believe that it will be all be okay.

 

But there is one more lesson here…

There is a lot you can say about the end of your life–but you better say it now. Talk to your loved ones. Write your ethical will. Fill out that living will. Say what it is you want. Appoint that guardian or family member to speak for you when or if you can’t.

Say all the I love you’s now. Go on those dream trips. Make memories. Laugh, cry, make love, sing, dance.

You want to not be a burden?

Start now. Invest in your relationships. Call your loved ones and listen to their day to day problems. Spoil them with your time. Go for walks and hold hands. Tell them how very proud you are of them, of the kind, good people they’ve become–then they won’t think you’re a burden.

You want not to be in pain?

Don’t dwell on pain now–physical or emotional. Live “pain-free” by practicing forgiveness, letting go and laying old issues down. Pain thrives off tenseness, tightness, and focus. Pain therapists use many techniques to help their clients manage pain–laughter therapy, engaging the mind on something bigger, more interesting, acupuncture, yoga…by letting go of pain today, we don’t attract it tomorrow.

You want to not be hung up on control?

Start trusting today. Take a risk. Fail. Laugh it off and try again. When you feel like a knotted fist inside your gut, recognize it and choose to trust. Give someone a chance. Give them a second chance. Give yourself a chance. The person we least trust is ourselves. We mistrust our own goodness. We are our own worst critiques, our own biggest doubters. Start with small affirmations–say them out loud in the car or in front of the mirror:

“I trust my own good heart.”

The biggest concerns of life are no surprise–they’re our biggest concerns every day–when you come to think about it. Every day, we’re given a chance to face our fears–to see our own good–and the goodness around us.

If you’re a caregiver, and you’re with a loved one who is coming toward the end, reassure them–let them know repeatedly that they are loved, that you will do all they can to make sure they’re not in pain, that you will honor their wishes, you will be there–steadfast. They will not be alone. Each time you say this to someone else, you say it to yourself.

I know as a caregiver this time is scary.

You don’t know how. Perhaps this is the first time you’ve faced death in an intimate way–with a family member this close. I was just like you–my dad died in hospital–and I was facing the death of my mother in my own home. I worried if I’d be okay–if I could handle it–emotionally.

IYou will find your strength and resolve.

You will keep your loved one safe–and honor their life and their death.

You will give them the dignity they deserve.

Even though you may feel like running, you will be brave. You will be there for your loved one–and it will change how you perceive life–and death.

~Carol D. O’Dell

Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

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Randy Pausch died last Friday.

He’s the Carnegie Mellon professor who wrote The Last Lecture.

The book is based off a lecture he gave to his students that received such worldwide attention on YouTube. If you haven’t seen it on YouTube, here’s the link:

It’s not his usual style lecture since he’s a computer geek who teaches about virtual reality.
But Randy contracted pancreatic cancer.
It changes your priorities.
Randy’s last lecture was about play, integrity, falling in love, and purpose.
Randy lost his battle with pancreatic cancer last Friday.
His wife of seven years and three young children will miss him every day.  
He was 38 before he ever found true love.
He said something I’m passing down to my unmarried daughter.
“Don’t get married until you find a guy who has come to the point that your happiness matters more than his.” 
Randy and his family was featured on ABC last night.
It was about the most inspiring thing on television I’ve seen in a long while.
Here’s the link: abcnews.go.com/GMA/story?id=3633945
The Last Lecture (book and video) was written Randy says, not for the masses, but for his children.
He left behind what is referred to as an ethical will.
What is an ethical will?
It’s usually a written document in which you pass down your ethical, spiritual and emotional values.

Here are some common themes seen in many of today’s ethical wills:

  • Important personal values and beliefs
  • Important spiritual values
  • Hopes and blessings for future generations
  • Life’s lessons
  • Love
  • Forgiving others and asking for forgiveness
One such document was written by Barry K. Baines MD. His book is titled, Putting Your Values on Paper
I can say with great pride that Dr. Baines read my book, Mothering Mother and endorsed it.
I didn’t put Randy and Dr. Baines together until just now. Not until I started writing this post.
I love the serendipitous nature of life. No wonder this story moved me so.
Randy’s book and lecture is so about living, really living.
He says it’s about achieving childhood dreams, but I think it’s about capturing the essense of those dreams and living them out every day.
It’s also about who you are and what of “you” do you choose to leave behind.
My adoptive daddy had a profound effect on my life. When he died, I remember asking God to pass down Daddy’s mantel onto me. It’s a religious term that is mentioned in the story of Elijah and Elisha.
In case you don’t know or don’t remember, Elijah was a powerful prophet in the Old Testament. Elisha wanted to be his under study. Elijah told him that the only way that would happen was for him to follow him around everywhere and the moment God took him, Elisha had to be there to catch his “mantel.”
The story goes that a fiery chariot swooped out of the heavens, grabbed Elijah, and as he was snatched away–his cloak fell to the earth and Elisha caught it. Elisha went on to be a power prophet in his own right.
Now this story sounds downright Greek (as in a good yarn of mythical proportions). 
While you may or may not choose to take it literally, it’s about the transfer of power.
It’s about appreticeship and mentoring.
This is what I wanted that I wanted Daddy to pass on to me: 
Daddy posessed quiet power. Wisdom. Strength. Love of family. Dedication.
Honor. Thoughfulness. Old Southerness. Sweetness. Easiness, but with a line of “this is as far as you go.”
No one messed with my daddy. Everyone respected and admired him. Everyone. He had real power.
The kind you earn. The kind earned by staying married, by being a sharp shooter in World War II.
By walking a quiet, good life.
Do you know what the physics equation is of power?
(I watch a lot of TLC, and Discovery Channel).
Power  = Energy Divided by Time
You want to know how to add power to your life?
Put in a chosen amount of energy over a chosen amount of time–and you’ll have the equation to get however much power you want.
Say you want a powerful body. Muscles.
Go to the gym for 45 minutes a day four days a week for six months.
You’ll have power. You’ll have muscles. That simple.
We over-think, try to take shortcuts, and really it’s mathematical. Put in the time. Put in the effort.
What’s this got to do with ethical wills?
Those powerful people in your life–whoever you respect and admire–your dad, a coach, a teacher–you recognize their power, their expertise, the way they make others feel and how they inspire them.
You want some of their power, their inspiration after they’re gone. You don’t want it disappated into the atmosphere.
Like Elisha, ask for it. Put in the time. (He put in ten years)
Maybe this is what caregiving is–putting in the time and being there to catch the mantel.
Ask your loved one to leave a piece of themselves behind.
Ask them to write it down, or video or audio record them.
Get them to tell stories. Ask them who influenced them, who inspired them.
You can download an ethical will form, or you can simply write a letter to those you love.
Caregivers, I urge you to get your loved ones to do this on one form or another. You’ll be glad to have something permanent, something you’ll always treasure.
Randy Pausch inspired a nation.
In a publishing era that seems too often to be more about marketing and hype than substance, a little book and a YouTube video comes along and knocks the world off its feet.
He talked about what matters most–in the end.
Love, family, hard work, truth, play.
His children–and his readers are blessed.

Carol D. O’Dell

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

available on Amazon

www.mothering-mother.com

Family Advisor at www.Caring.com

Syndicated Blog at www.OpentoHope.com

Kunati Publishers, www.kunati.com/motheringmother-memoir-by-car/ – 95k

 

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