BOOK REVIEW: An Uncertain Inheritance: Writer’s on Caring for Family edited by Nell Casey

An Uncertain Inheritance: Writer’s on Caring for Family
Edited By Nell Casey
William Morrow/Harper Collins(November 13, 2007)
304 pp Hardcover
Nonfiction: Parenting/Families/Aging/Caregiving
ISBN-10: 0060875305
ISBN-13: 978-0060875305
Amazon Price: $16.47

As a writer and sole caregiver for my 84-year-old mother who has Alzheimer’s, An Uncertain Inheritance: Writer’s on Caring for Family, edited by Nell Casey piqued my interest.

Writers produced the 19 essays gathered for this book, but more importantly, these essays were written by caregivers and those being cared for themselves with a no-holds-barred brutal honesty.

Under my currant circumstances, I thought this book might bring me to tears with each story, but I was wrong. It’s the powerful honesty, written eloquently in all its vulnerability, that will grab your heart, reduce you to tears, cause you to chuckle, and in some cases infuriate you, as it did me.

These stories weren’t fiction fantasies or pretty pictures of caregivers being selfless martyrs, as some may think, and the patients weren’t patiently waiting to die; these were true accounts of people — parents, children, spouses, friends, and siblings — who while living life, being all they could be, were stricken with illness or injury and needed help.

Caregiving for the chronically or critically ill is not a pretty subject. These writers opened their homes, hearts, and minds and let out every ounce of love, fear, frustration, and anger and shared the trials and tribulations they felt during their caregiving journey.

Each essay had its own merits, story, and sense of need.
Helen Schuman in her essay, My Father the Garbage Head, writes with poignant, heartwarming honesty of her father’s heart attack and strokes which led to his death.

Sam Lipsyte, in The Gift speaks openly and humorously about his drug abuse, how it wrecked his life, and while he “cleaned up his act” his mother let him move back in. Shortly after, his mother tells him and his sister that her breast cancer had recurred. He handled the news with a matter-of-fact acceptance that he would be her caregiver.

I was sort of relieved when I realized it was going to be me. Why knock yourself out trying to resuscitate your life when you can cling to somebody else’s. (12)

Ann Harleman’s My Other Husband describes her husband’s illness and the grueling bleakness and burden of MS.

MS is something that goes on happening—growing, changing, worsening—measurable not in weeks, months, or even years, but in decades. Something huge and black that descends slowly and inexorably and surrounds you. (21)

Her heartfelt love showed in each of the slices of their life she describes before MS took over. Her friend told her, “With chronic illness, a lot of times the caregiver ends up dying first. Out of stress and exhaustion. I’ve seen it.” (28) After years, frustrated and worn, she finally decided to place him in a nursing home “for his sake and hers.”

Eleanor Cooney’s essay Death in Slow Motion was formed from a former Harper’s Magazine article and later became a book under the same name. The eloquently written story is about her mother, writer Mary Draper, and her decline with Alzheimer’s Disease.

Cooney shoots from the hip with her openness of dealing with Alzheimer’s and the dilemmas and life interruptions her and her mate dealt with after moving her mother into an apartment close to their home. After just a few short months of her mother’s arrival, Cooney finds herself in an argument with her mate, who bolts out of the house to clear the air, and she stands in the dark with her “heart pounding with fury, sorrow, anguish.” (120)

She speaks of her mother’s lack of memory, repetitive conversations, questions, and how people with dementia “become unappetizing.”

They don’t bathe unless you make them…You will begin to find a person you love…odious. And you will hate yourself for feeling it. (126)

Susan Lehman, in Don’t Worry. It’s Not An Emergency tells a grim, yet capturing story of her nearly 300-pound mother, who spoke with a “thunder” voice, or “blast,” sat and ate sorbet, doughnuts, huge amounts of candy, and smoked cigarettes all day. Lehman moved her mother from her home in Ohio to live on the 8th floor of her apartment building so she could keep a closer watch on her. Her three children adored their grandmother and visit her daily.

The story of her mother’s illness is not the least bit funny, but Lehman manages to spin the tale with utmost charm and humor.

Did I mention that my mother had no teeth? And that as a result, her mouth flapped back and forth, like bird wings, over her face? Did I mention that my children called her Doodles? (167)

In the Land of Little Girls Ann Hood’s 36 hour experience with her 5-year-old’s illness and quick death was appalling in many ways. Hood describes not only the illness and death, but also her devastation at Gracie’s death and the horrible treatment she and her family were subjected to in the hospital.

An Uncertain Inheritance may never become a best seller due to the subject matter, but it should be a book that each and every human being should read and realize the reality it speaks about; they too may face the need to be cared for, or need to care for someone else. I only hope the readers have families like these who take that responsibility seriously regardless of time-consuming needs, the love, the fear, the frustration, the anger, and the rejection that may be a result from it.

Click HERE to purchase An Uncertain Inheritance: Writer’s on Caring for Family.

Alzheimer's Plateaus and Declines

Alzheimer’s is the most puzzling disease I’ve ever seen. As loved ones progress through the stages of Alzheimer’s disease, they become more and more dependent on the caregiver to take care of their needs.

There’s a well known phrase with Alzheimer’s caregivers that reminds us that we can share our experiences, but each person with Alzheimer’s is affected differently than the next: “When you’ve seen one person with AD, you’ve seen one person with AD.” Every person with AD progresses differently and at his or her own rate.

There is no standard situation for each stage of the disease. One loved one may continue in one stage, plateau in that stage for years, and decline swiftly to the end stage within months. Other loved ones may never reach the end stage and are saved the progressive decline to the end.

I’ve learned to deal with any situation that arises in Mom’s journey with Alzheimer’s, however; the fluctuation of abilities (the back and forth) from one week to the next is always puzzling. For months Mom has been on a plateau where she’s been unable to dress or bath herself. She was unable to recognize what each piece of clothing was for, let alone figure out how to button buttons. She needs step-by-step instructions on how to wash, and even then she’s unable to muster the coordination to accomplish the task. Her long-term memory is gone and her short-term memory went along with it.

Yesterday, she actually remembered I had a headache over the past few days and asked if it was gone. She also buttoned her shirt for the first time in three months. If someone had come to visit her yesterday, she would have appeared ‘fine’ in the respect that she was able to hold a conversation as well. Her seemingly enhanced cognitive state continued throughout the day. She helped set the table for dinner, helped dish out her meal, and she even washed the dishes when dinner was over.

I sat in amazement as I watched her, knowing she was having a ‘good day’, and wondering how long it would last. When it was time to get ready for bed, she buttoned her own pajama top and said the words she used to say to me every night: “Thank you for taking care of me, honey. I love you and I don’t know what I’d do without you.”

As I sat in my room after she was asleep, I felt as if I’d been thrown backwards into this awful disease. I was thankful for the abilities she mustered for the day, but these back and forth cognitive scenarios can really screw up the ‘prepared’ mindset we caregivers try to maintain. We need to keep reminding ourselves to be prepared for the next decline, even though we cherish the good days our loved ones have.

This morning we were right back to where we were Friday; Mom didn’t recognize her clothes, her room, her house, and she was having a difficult time maneuvering from a sitting to standing position. Once she got moving, it was slow and shaky, even with the walker.

I truly hate Alzheimer’s and what it does to our loved ones. The only thing this disease has reinforced in my mind is the one thing I’ve tried to live by my entire life: Live one day at a time and live each day as if it is the last—because we just never know what the next day will bring, or if it will come.

On a different note: It’s Steelers Sunday. I think I’ll turn on the game and see how well they beat the Browns. :) Maybe I can even convince Mom to watch the game.

Forty Things An Alzheimer’s Caregiver Needs To Remember

All too often caregivers find themselves in situations where they constantly feel they need to explain what they are doing and why they are doing it. All too often they run into people, including family members, who just don’t understand Alzheimer’s Disease, and for the most part never will. All too often caregivers have more stress from these type situations than they do with the care giving itself.

These are just a few of many things caregivers need to remind themselves when taking on the responsibility of caring for a loved one. You are a caregiver for the purpose of providing security to your loved one and maintaining their health, welfare, safety, and dignity. Anything beyond that is not your responsibility.

Each Alzheimer’s patient is different from the next. No one person has the same reaction to a situation. Each situation is different--every moment. This list is to help all caregivers remember they are doing a good job in taking care of their loved ones, and to remind them not to be too hard on themselves.

1. I need to remember I am here to do a job and that job is to take care of my loved one.
2. I need to remember that I am doing the best thing I can possibly do for my loved one.
3. I need to remember my loved one comes first before all others.
4. I need to remember to keep my loved one safe.
5. I need to remember to keep my loved one fed.
6. I need to remember to keep my loved one warm.
7. I need to remember to keep my loved one clean.
8. I need to remember to keep my loved one healthy.
9. I need to remember to keep my loved one comfortable.
10. I need to remember to keep my loved one happy.
11. I need to remember to keep my loved one free of pain.
12. I need to remember to keep my loved one free of aggravation and aggression
13. I need to remember to keep my loved one free of anger and upsets
14. I need to remember to keep my loved one from being distracted.
15. I need to remember to keep my loved one in familiar surroundings.
16. I need to remember to keep my loved one stimulated.
17. I need to remember to keep my loved one from loud noises and busy environments.
18. I need to remember to keep my loved one feeling adequate and worthwhile.
19. I need to remember to keep my loved one remembering as long as possible.
20. I need to remember to find solutions before behavior problems appear.
21. I need to remember that I do not need to explain my decisions to those who don’t agree with my decision; the caregiver’s concerns/wishes should carry more weight.
22. I need to remember I do not need to explain why I have to keep my loved one on a schedule.
23. I need to remember I cannot make others accept what they do not want to accept.
24. I need to remember I do not need to be everyone's "excuse" for what they cannot do or do not understand.
25. I need to remember others are responsible for their own actions.
26. I need to remember I am only responsible for my own actions.
27. I need to remember I am only responsible for my loved one’s feelings and mine.
28. I need to remember I am not responsible for how often someone decides to visit.
29. I need to remember that not everyone is as flexible as I am.
30. I need to remember that not everyone is as patient as I am.
31. I need to remember that not everyone is as understanding as I am.
32. I need to remember that I shouldn’t withdraw from social activities.
33. I need to remember not to worry about tomorrow, but instead think about the moment.
34. I need to remember to quit worrying about what other’s think or say; I am the only one who knows what I’m capable of doing.
35. I need to remember not to be disappointed when I don’t receive help.
36. I need to remember to give myself permission to grieve the losses, but also focus on the good memories.
37. I need to remember my loved one feels my love and remind them they are loved and respected.
38. I need to remember to take care of myself.
39. I need to find time for myself.
40. I need to remember my spirit can’t be broken.

More often than not the responsibilities, problems, and feelings of a caregiver aren’t taken into consideration by those around them. If someone hasn’t told you you’re doing a good job in taking care of your loved one, read this list often to reassure yourself, and take this time to give yourself a pat on the back for doing the best job you can do.

There are times when you reach the point in your care giving where you need to learn to ignore problematic people and situations; continue to do what you’ve been doing for your loved one and make sure you take care of yourself as well. You cannot let people who don’t understand Alzheimer's Disease, and its many ups and downs, upset you and possibly endanger your health. If that happens, there would be no one to care for your loved one.

To all Alzheimer’s caregivers: Take a deep breath, read the 40 reminders often, and pat yourself on the back for sharing this disease of crossroads with your loved one until the road wanders no more.

Always remember: With Alzheimer’s Disease, the past is no longer, there is no future; there is only each moment. Cherish those moments, for they may be the last.

For more information about Alzheimer’s Disease visit the Alzheimer’s Association website.

Forty Things An Alzheimer’s Caregiver Needs To Remember has been published at Blogcritics.org in the Culture section.

Come Glow With Us—Light Up Our Lives

October 1 at 8:00 PM

I’m inviting all my friends, relatives, and other caregivers to shine a light on Alzheimer’s disease awareness. All you have to do is put up a string of Christmas light, turn on a porch light, or place an electric candle in your window today and turn them on at 8:00 PM.

Come Glow With Us is a campaign that was started to shed a little light on the thousands of primary caregivers who give of their time and their compassion, to ease the journey of those they love.

In many cases their work is unnoticed, unappreciated, unpaid.
They toil day after day, often in isolation, suffering along with their loved ones.

They are the invisible victims of Alzheimer and other long term illness.

The Come Glow with Us campaign began last year to mark the 100th anniversary of Dr Alois Alzheimer discovering the plaques and tangle traits of Alzheimer’s disease.

In response to our invitation “glowers” lit up the night skies from California to Florida, Vancouver to Newfoundland, (23 states and eight provinces were represented) as well as Ireland, England, Scotland and Australia.

This October 1 - we ask that you help us make the glow even brighter.
Place the spot light on dementias and light up our lives, so we know you care about those who someday, may be caring for you.

All you need do is place one string of Christmas lights somewhere prominent, and plug them in at 8 pm October 1.

Every hour that night - new sets of lights will glow as the clock turns eight in each time zone.

Give us hope of a better tomorrow - show you care - Come Glow With Us.

A Tribute to My Caregiver Friends -- Reversal

Many of my online friends have lost their loved ones due to this horrible disease Alzheimer’s. My heart breaks for those who are grieving now, and I wish them much strength in their grieving process. Though our loved ones do pass and we know they are finally at peace, it breaks our hearts to see them go.

((HUGS)) to all at the Alzheimer’s site who have walked down this road, and have reached the end where there are no more crossroads to wander. May each of you hold your loved ones in your heart and may they be at peace.

Thanks to one of the frequent posters at the site, I’m offering this poem that she shared with all the caregivers. Thank you. These words are so heartbreaking, yet so true.


Reversal
By: Hannah Ruth Joseph


When she was born and helpless and innocent as a dove

Her mother held her tightly

To show her she was loved.

And when she was a toddler, her legs just sent her sprawling,

So mother held her hand to keep her child from falling.

Then as she reached her womanhood and needed room to grow,

The mother reluctantly realized…

She had to let her go.



Time has a way of changing things, reversing the roles that are played,

Now, the daughter becomes the mother,

For the mother has lost her way.



When she grew old and frail and delicate as a dove

Her daughter held her tightly

To show her she was loved.

And as she grew more feeble, her legs just sent her sprawling,

So daughter held her hand to keep her safe from falling.

And when she reached the end of life with no room left to grow

The daughter reluctantly realized...

She had to let her go.

What Do I Do All Day?? I'm A Caregiver!

Many caregivers deal with people who just don’t get it. Alzheimer’s Disease is one of the most horrible diseases a person could get. There is no normalcy with this disease. There is no knowing what the day might be like. There is no knowing what the next moment will be like. Planning anything is almost impossible. Once a loved one reaches the severe stage of Alzheimer’s, and sometimes even in mid-stage, everyone can throw plans out the window. The best we can do is keep our loved ones on a schedule and hope that nothing agitates them to throw them off that schedule.

Our job is to maintain a safe, warm, clean, relaxing environment and protect the health, safety, welfare and dignity of our loved ones.

Caregivers are on a constant watch, every minute of every day, making sure our loved ones are safe, warm, clean, dry, comfortable, and we do our very best to keep our loved one free of agitation.

Some people with Alzheimer’s Disease become attached to the caregiver’s hip. There is no moving from one room to another without the AD patient following behind. There is not a moment’s peace or a moment to relax. Just when a caregiver sits down hoping to prop their legs up to relax, there is a call for some need or another.

AD patients need help with everything. They need their hygiene taken care of for them because they’ve forgotten what to do. They don’t remember how to wash, brush teeth, wipe after going to the bathroom, flush the toilet; sometimes they don’t remember where the room is where these things should be done. They need a step-by-step instruction on how to walk, move through the house, get to the bathroom, and once they are in the bathroom, they need a step-by-step prompt as to what they should be doing while they are in there. In many cases, the person with Alzheimer’s cannot perform needs even with the prompts. They become agitated because they are no longer able to do things.

Someone recently sarcastically told me they work for a living and asked me, “What do you do all day?”

On days the loved one may be at Day Care, the caregiver is still busy all the time. At least I am. Regardless of how many hours my Mom is at Day Care, that doesn’t change the need for other things to be done.

My significant other lives in my house. I moved in with my mom into her house. We have two houses to maintain.

There’s grocery shopping, cleaning, laundry, prescription pick up, PT therapist appointment, OT therapist appointment, home health nurse appointment, dog grooming, dog veterinarian appointments, carpet cleaning (due to accidents the Depends don’t catch), bed sheets to be washed, beds to be made, bathrooms to be cleaned and disinfected everyday, grass cutting, flower bed weeding, house repairs, gutters to be cleaned, shrubs to be trimmed, gravel driveways to maintain, ditches to dig for rain drain-off, ditch basins to be cleaned out, storm damaged trees to be removed from driveways and property, newspaper to be picked up, mail to be picked up, garbage to be taken out and picked up, car oil changed, furnace to be checked, bills to be paid, meals to be cooked, doctor’s appointments, etc., etc., etc. And when the loved one is home it’s a constant, never-ending day’s work just meeting their every moment daily needs--and all their nightlong needs.

A typical day with Mom begins as follows:

“Good morning, Mom. It’s time to get up.”
“Already!”
“Yes.”
“I’m tired.”
“I know, but you have things to do.”
“What do I have to do?”
“We need to get you cleaned up.”
“Where do I do that?”
“In the bathroom.”
“Where’s the bathroom.”
“Let’s get up and I’ll show you.”
“Do I have to?”
“Yes.”
“Grumble, Grumble. I can’t get up.”
“I’ll help you.”
“Thank you, honey.”
“You’re welcome, Mom.”
“What now?”
“I have to wash you.”
“I’m sorry you have to do this.”
“It’s okay, Mom. That’s what I’m here for.”
“Thank you, honey.”
“You’re welcome, Mom.”
“What should I do?”
“You need to stand up.”
“I can’t.”
“Sure you can, Mom.” (I help her up.)
“What’s that?”
“It’s your walker.”
“Why do I need that?”
“It helps you walk.”
”It does?”
“Yes. It keeps your balance.”
“I’m dizzy.”
“You’re fine. Hold onto the walker.”
“What do I do?”
“Move your feet.”
“I can’t.”
“Sure you can, Mom.” (I touch her leg to prompt the move.)
“Where do I go?”
“To the bathroom.”
“Where’s the bathroom?”
“Over there.”
“Where?”
“Follow me.”
“Where am I going?”
“To the bathroom.”
“Where’s the bathroom?”
“We’re on our way.”
“What am I doing?”
“Going to the bathroom.”
“What for?”
“To get cleaned up.”
“What for?”
“So you can get dressed.”
“I’m tired.”
“I know.”
“Where am I going?”
“To the bathroom.”
“Where’s the bathroom.”
“Over there.”

At this point we’ve only made it three feet to the end of her bed. Are you tired reading?

“Where?”
“We’re almost there.”
“I’m tired.”
“I know.”
“What am I doing?”
“You’re going to the bathroom.”
“What for?”
“Keep walking, Mom.”
“What’s this thing?”
“It’s your walker.”
“What’s it for?”
“To help keep your balance.”
“What am I doing?”
“We’re going to the bathroom.”
“It’s too late.”
“I know, Mom. We need to get you cleaned up.”
“I’m sorry, honey.”
“It’s not your fault, Mom.”
“I’m dizzy.”
“You’re fine, Mom. You’re just tired.”
“Yes, I am.”
“Keep walking, Mom.”
“Where is this place?”
“Just a few more steps.”
“Oh, there it is. What’s that?”
“It a toilet rail.”
“What’s that for?”
“To help you get on and off the toilet.”
“We finally made it.”
“Yes, we did.”
“What should I do?”
“Stand there while I get these (Depends) down.”
“Now what?”
“I’m running the water for your shower.”
“I don’t want a shower.”
“I know, Mom. But it’s the only way to clean you properly.”
“I don’t want a shower. I’m cold.”
“I know. The water is perfect.”
“I don’t want a shower.”
“I know. Let’s clean you up a bit.”
“What do I have to do?”
“Step over to the bathtub.”
“I don’t want a shower. I’m cold.”
“I’m sorry, Mom. Sit down.”
“Now what?”
“Slide over.”
“I can’t.”
“Sure you can, Mom.” (I help slide her over.)
“What do I do?”
“Lift your legs over the bathtub.”
“I can’t.”
“Sure you can, Mom.” (I lift her legs over the bathtub.)
“Now what.”
“I’m turning on the shower.”
“I don’t want a shower.”
“Feel how warm the water is?”
“No it isn’t. I’m cold.”
“Here’s the washcloth, Mom.”
“What do I do with this?”
“Put some soap on it.”
“Where’s the soap.”
“Right here.”
“Now what?”
“Put the soap on the washcloth.”
“I hate this. I’m cold.”
“I know.”
“What should I do?”
“Wash your face.”
“How?”
“With the washcloth.”
“I got soap in my eyes.”
“I’ll help, Mom.”
“There’s still soap in my eyes.”
“How’s that?”
“Better.”
“Good.”
“But I’m cold.”
“I’m sorry you’re cold.”
“Now what do I do?”
“Wash your neck.”
“Will you do it, I’m tired.”
“I’ll wash your back. How’s that?”
“Brrr, it’s cold.”
“The water is warm, Mom.”
“I’m cold.” (All this time the heater is blasting and I’m sweating.)
“Sorry, Mom.”
“What’s next?”
“Your arms.”
“What about my arms?”
“You need to wash them.”
“What’s next?”

And so on, and so on, and so on.

Finally everything is washed and clean.

“Okay, Mom. Let’s get you dried.”
“What do I do?”
“Just sit there for a minute.” (I dry her hair, and face.)
“That feels good, but I’m cold.”
“We’re almost done, Mom.”
“Hurry up, I’m cold.”
“Okay, Mom.”

We take the next ten minutes getting her off the bathtub chair, out of the bathtub, and standing.

“Now what?”
“Now we’re going to dry you and get you dressed.”
“Thank God. I’m freezing.”
“You’ll be warm soon, Mom.”

Now here we are an hour into the day and we’re just beginning to get dressed and we’re still in the bathroom.

I won’t bore you with the remaining 7-8 hours Mom is up during the day, but I think most people can get a pretty good idea of what a caregiver goes through in just one hour. Multiply that by how ever many hours the loved one is up and awake and maybe you’ll have an idea of how exhausting a “good” day is.

For those who ask what a caregiver does all day, maybe they should buy the book, “The 36-hour Day.”

The next time someone flaunts their work schedule at me and sarcastically asks me what I do all day, I should use the answer those on the Alzheimer’s Association site use: “I sit around doing nothing but eat bonbons and party all day. What do you do?”

But no, that would be me causing a problem, so I’ll just hang up!