The Colors of Caregiving

50-Shades-of-Caregiving-1

Colorful is not the way one would typically describe the life of a caregiver but once my father-in-law, Rodger, came to live with us my days began to revolve around the colors of his life.

Outwardly he appeared to be a drab little wren of a man. All his clothing was either brown or grey, the monotony broken only by one of the muted plaid shirts he saved to wear for an appointment with one of his many doctors. His lined, expressionless face would have been a blank canvas if not for deep brown eyes topped by grey eyebrows so overgrown they rivaled those of the late Andy Rooney. When he spoke there were no colorful sayings to add interest. ‘Just the facts, Ma’am.’ Everything about him seemed designed to blend into the background. At the time I didn’t think to question why he was so determined not to be seen or what he might be doing when he thought I wasn’t looking.

Every day started and ended with a rainbow of colored pills, red, yellow, white, green, blue, pink. Some were taken once a day, others two or three times a day, to treat or control his mental illness, Parkinson’s disease, heart disease, Dysphagia, and various infections that seemed to pop up as often as weeds in summer. In between doses, billowing clouds of vapor from breathing treatments to ease his C.O.P.D. wafted out of his room. He counted out is various medications and filled his pill box weekly and he religiously filled out a mail order form when they began to run low. He knew when it was time for each pill and never failed to take them on time. Or so it seemed.

I should have known what he was doing when the symptoms first appeared but I was still too green to know how devious he could be. Even his doctors were fooled until they day his mind shattered into shards of throbbing suspicion. As I write this I try to imagine what a psychotic break looks like. I picture it as a swirling mass of colors so bright they burn his soul leaving him decimated and his caregiver shrouded in deep, purple guilt.

Eventually I discovered that the anger and resentment I sometimes felt when dealing with the daily stress of life as a caregiver could hide in a fog of grey fatigue or the flashing colors of an aura signifying the onset of a migraine headache causing me to scramble to find what I could to minimize the pain.

Fortunately, not all the colors of caregiving are dark or somber. If they were we couldn’t do it. I treasured the bright blue moments of clarity whenever they appeared. Like the day he told me how he and his brother would roll up the carpets in the farmhouse kitchen, when they were young men living in Italy, in order to dance a tango with girls from the village. Was that a hint of pink pride on his face at the memory of holding a pretty woman in his arms? I basked in the bright yellow sunshine of joy when he gently held his newborn great granddaughter, Ava, for the first time, his eyes full of love for the tiny creature gazing up at him.

Yes, being a caregiver is a very colorful occupation. When Rodger passed away, once the worst of the grieving passed, I realized that the moments we shared, the good and the not so good, would forever be part of the richly colored tapestry of stories being woven by caregivers who tend to their loved ones every day and I am grateful to discover there are places like this where we can share them. What are the colors in your story?

Note: This post first appeared on The Caregiver Space in 2013 under the title, 50 Shades of Caregiving. I am honored to be a guest blogger for them in addition to writing here as The Imperect Caregiver. You can also find caregiver blog postsby me on AgingCare.com

 

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He Was Home For A While

Frail and with growing memory problems, Rodger kept us on our toes as he struggled to navigate through a world that refused to make sense. Routine was vitally important; without it he wound down into confusion so complete all movement came to a halt. He was stuck somewhere in time.

Years after moving into our home, we would come upon him staring into space, mumbling softly about a missed appointment made fifty years ago or reliving a day in the life of a long ago soldier.

Sometimes with pity, always with patience, I would gently bring him back. “Orienting him to time and place,” as the doctor said.

His favorite room was the kitchen. Small and bright with sunshine, it opens onto a view of the Blue Ridge Mountains. Hills he called them, telling me about the fabulous peaks he once climbed in the mountain ranges of Italy. For a short time his memory was as sharp and clear as the cold mountain air of days gone by.

Elegant Mountain Ranges, Italy

A charming boyish smile crossed his face as he spoke of his mother making polenta before going to church each day. Of rolling up the rugs and dancing on Saturday night in a kitchen glowing with firelight and youthful dreams.

In the kitchen, with no need of persistent voices orienting him to time and place, he was able to move. He was home again.

Hold on to the precious moments when they come for they are the blessings we receive from those who cannot thank us.

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A Prayer for the Caregiver

As a caregiver I spent a lot of time praying. I doubted my ability to carry on and castigated myself each time I lost patience or failed to protect my father-in-law from another setback. While I recognized his frailty I forgot about my own. I expected perfection where there could be none. I prayed for guidance and asked God to show me the path he wanted me to take. There were many days when I doubted He heard me. Often I wondered if I was worthy of His help and attention. I cried a lot. But always, when I was at my lowest, help arrived in some form and I knew my prayers were heard. Today I share this prayer for you, the caregiver, so you know you are never alone and you have done well.

A Prayer for the Caregiver

By Bruce McIntyre

Unknown and often unnoticed, you are a hero nonetheless.

For your love, sacrificial, is God at his best.

You walk by faith in the darkness of the great unknown,

And your courage, even in weakness, gives life to your beloved.

You hold shaking hands and provide ultimate care.

Your presence, the knowing, that you are simply there.

You rise to face the giant of disease and despair,

It is your finest hour, though you may be unaware.

You are resilient, amazing, and beauty unexcelled.

You are the caregiver and you have done well.

Prayer shared courtesy of A Place for Mom

The following is an excerpt from Confessions of an Imperfect Caregiver:

There were only two cars in the church parking lot when I pulled in, but considering it was a weekday afternoon, that wasn’t surprising. After dipping my fingers into the holy water font and making the sign of the cross, I slipped into a pew near the front of the church. For several moments I simply sat there, taking in the lingering aroma of incense, candle wax, and furniture polish. …

“Our Father, who art in Heaven,… ” I prayed, the words taking on a new importance as tears of frustration and guilt streamed down my face. “Thy kingdom come. Thy will be done …”

All right, God, if it is Your will that I take care of my father-in-law, I’m happy to do it. But You have to help me. I’m new at this, and I’m afraid I’m not doing it very well. He’s a sick old man, and he’s not trying to be difficult. I know that. So why do I feel so angry?

“… And forgive us our trespasses, as we forgive those who trespass against us.… but deliver us from evil … ” I sobbed, my heart breaking for both of us. Why couldn’t I be stronger?

“Help me to be more patient and understanding. Guide me to make the right decisions when it comes to his care. Help me find the right words to soothe him when he’s confused and frightened. Please take the anger away. It frightens me. It weakens me, and I need to be strong to do this. I don’t want to let Mike down, and I can’t let Rodger down. He has nowhere else to go. Please, hold me in your love and light and show me the path you want me to take. Amen.”

My prayer complete, I struggled to stop crying, but the harder I tried the harder the tears flowed. Just as I began to fear they’d never end, exhaustion and embarrassment forced me to gain control of myself. Get a grip, I scolded myself. You’ve had a good cry, and it’s time to go home.

I’d left my purse in the car and had nothing to mop up the watery mess I’d made of myself, leaving me with no choice other than to wipe my nose on my sleeve. I didn’t notice the near-silent approach of the only other person in the church until a tiny elderly woman, dressed all in black, touched my shoulder and handed me a bunch of tissues.

“God bless you,” she whispered as she turned and walked away.

Yes, God bless me. I sure do need it.

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A Year of The Imperfect Caregiver

It was one year ago today that The Imperfect Caregiver blog appeared for the first time. Within days I started hearing from other caregivers and caregiver bloggers and with each new connection I learned more about how enormous this community is and how little the people around us know about what we do and the impact it has on our society.

As a writer I try to inform through story telling. In doing so I hope to connect with caregivers and the people around them. So often our family members don’t understand what it’s like to care for a seriously ill loved one twenty-four hours a day for a period of many months or years.

Siblings live far away and can only visit once or twice a year. Others have demanding jobs that keep them too busy to help. Families aren’t perfect, many have troubled histories filled with anger and resentment. A son, daughter, mother or father may have good reason  to stay far away from someone who abused them in the past. Still someone must step up and when that someone is you your life changes dramatically. Even when the person you care for is a treasured spouse, parent or child the constant demands can become too much and the caregiver begins to fall apart.

Quotes by caregivers include:

“I haven’t had a good nights sleep in 4 days! I just want to walk away from it all, but I won’t.”

“Oh lord, I think my family might be on the verge of working as a team. Please make it true.”

“This is taking a toll on my marriage of 31 years and its breaking my heart.”

“I want my mom back. This is a nightmare.”

“I go along with her delusions, she’s upset. If I try to tell her the truth, she’s upset. Nothing is helping.”

“I’ll never understand the disease…but today I’m at peace. I pray you all are blessed with these rare moments too.”

And here’s a quote from me about one of the hardest days I had as a caregiver:

“I put my head in my hands and I cried. It wasn’t a dainty cry with gentle tears moistening my cheek. It was a hard-driving, gut wrenching, chest heaving, sloppy, ugly, sobbing cry. My nose ran and my eyes burned from the force of it and there were moments when I thought I might never stop. But I did. And then I started again. And again after that. And again after that, until my eyes were nearly swollen shut and my head pounded and my heart stopped aching. I cried. I let it out. But you know what? That didn’t make me weak.I was still the caregiver and I was thankful. … I was thankful for a good hard cry.”

As you can tell from these comments caregivers don’t have all the answers nor do they have unlimited resources or energy. They simply do what needs to be done. And that takes a very special person.

wisdom and energy

If you know a caregiver reach out and lend a hand to help or an ear to listen and let him or her know they are not alone.

Thank you for following The Imperfect Caregiver.

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There Really Are Angels Among Us

caregiving angels

When I first saw this picture I was reminded of a day when angels made their presence known to me. There had been an ice storm and Rodger was in the hospital again. Unable to get there so see him for a few days I was worried about him and how he would react upon seeing me. Although he often said he didn’t mind being in the hospital, he always resented it and acted out when he got home. I was becoming overwhelmed and prayed often asking God to send help. I prayed again as I drove the winding road over the mountain into West Virginia to the VA hospital.

The following is an excerpt from chapter 25 of  my book Confessions of an Imperfect Caregiver, the true story of my time as an imperfect caregiver.

“What did you say?” I asked, not sure I heard right.

“I asked if you need help. I understand that you’ve been caring for your father in your home for a long time and that his needs are extensive. Are you able to leave him to go to the store or go out to dinner with your husband? When was the last time you took an afternoon for yourself?”

“Um …” I stuttered. “Wow. Yes, I need help. Who are you again?” I wanted to ask him to turn around so I could check for wings, but I was afraid to appear cheeky to God.

“Here’s my card. My name is Rob Angelis, and I’m a social worker. I’d like to arrange some help for you…I can offer you in-home assistance if you’re willing to accept it.”

“Oh, I’m willing to accept it.Please tell me more about the program and when we can start.”

Yes, there are angels among us. Many are family caregivers. In the United States alone there are between 65 and 90 million family caregivers and the numbers grow every day.  Please do what you can to be supportive. The gift of time is precious to caregivers. A moment of respite is a godsend.  Be an angel and reach out to a caregiver.  Someone near you is praying for help.

Could I create a likeable, but realistic character who suffered from Alzheimer’s?

Anette Dashofy, author of the Zoe Chambers mystery series shares a bit of her caregiver story and how she created a very special character in her book, Lost Legacy, to honor her father. Welcome Annette.

Bobbi Carducci and I met and bonded many years ago in the hospitality suite of a Pennwriters Conference, commiserating about our roles as caregivers—she for her father-in-law and I for my dad. Sisters in the battle to maintain a real life while providing comfort for not-always-cooperative loved ones.

Of course, being writers, we both chose to share our emotions through the printed word. Her book is a lovely memoir. Mine, a work of fiction. Lost Legacy is the second in my Zoe Chambers mystery series.

This book has been a story of my heart, and as thrilled as I was to get the first one published, this one is special. Lost Legacy is dedicated to the memory of my dad, who—like Harry—Pete Adams’ father in the book, suffered from Alzheimer’s. Harry is NOT my dad. My dad’s illness was dark and ugly and complicated with strokes. Dad couldn’t walk without assistance, but didn’t remember, so he fell. Repeatedly. Loss of independence, combined with the ravaging effects on his mind, made him short-tempered and…well…just plain mean at times. He lost his ability to internally edit or use good judgment. He struck out verbally at those he most loved, reducing my mom to tears on more than one occasion.

Could I take such a hideous disease that reduced my strong, take-charge dad into a wheelchair-bound, helpless and angry man and write a fictional character who didn’t make the reader slam the book closed? Could I create a likeable, but realistic character who suffered from Alzheimer’s? There are a lot of readers out there with family members dealing with this or similar dementia ailments, and I knew they would call me out big time if I didn’t get it right.

But I really wanted to create this character of Harry. I’ve been the caregiver daughter who dreamed of running away. Like Pete, my own loving brother had difficulties watching our father deteriorate—though not as badly as Pete! As writers do, I took those relationships and magnified them. Played the what-if game.

Instead of focusing on the darkest parts of my dad’s illness, I used a lot of his more lovable quirks in creating Harry Adams. Spending time with Harry was like having a little bit of my dad around…the part I remember fondly. His addiction to chocolate milkshakes. The way he called everyone “Sunshine.” His mischievous grin.

I hope I succeeded in creating a real representation of an Alzheimer’s patient and the people around him. I think I did. So far my readers have given me thumbs up for the effort. Harry may have been the biggest challenge of my writing life (so far!), but he’s also become my favorite character. And the one I’m most proud of.

Also, I’m donating a portion of my royalties for Lost Legacy to the Alzheimer’s Association in honor of Dad…and of Harry.

Note: Although Annette was unaware of it when she named him, Harry shares his name with my father, the late Harry Simpson. It seems Annette and I are connected in ways that go beyond the love of writing and I am proud to know her.

 
http://www.annettedashofy.com/files/Home.html

 

The Four Walls of My Freedom – by Donna Thomson

I am proud to share the following information about this book for caregivers. The new paperback edition of the book, “The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving” (The House of Anansi Press, 2014) by Donna Thomson  is available in the USA at all major booksellers!

Donna said:

Here’s a short interview that aired a few months ago on a national morning TV show in Canada.   It will give you a sense of the book.  Here’s the link – sorry, I couldn’t find a way to embed it. http://canadaam.ctvnews.ca/video?clipId=315079&playlistId=1.1750084&binId=1.811572&playlistPageNum=1

DONNA THOMSON began her career as an actor, director and teacher. But in 1988, when her son Nicholas was born with severe disabilities, Donna embarked on her second career as a disability activist, author, consultant and writer.

In her book, “THE FOUR WALLS OF MY FREEDOM”, (2010 and coming out in paperback Jan. 2014 by House of Anansi Press), Donna examines her personal family experience with caregiving, probing the ethics and economics of how families giving and receiving care can flourish in society. Donna examines how social innovation leading to practical solutions for families can thrive even in times of austerity – a subject she blogs about regularly at her site “The Caregivers’ Living Room” (www.donnathomson.com). Donna also writes extensively for magazines on the topics of eldercare and family caregiving.

 

A Few Kind Words

Kind words echo

Caregiver be kind to yourself. Don’t judge yourself harshly or second guess the decisions you make. Every day you do the best you can and no one can ask for more, not even you.  Mornings, as you prepare to care for loved one, remember these words by Mother Teresa and know you are not alone.

 

 

Thoughts of Rodger

Bobbi with Rodger
As I prepare for the offical launch of Confessions of an Imperfect Caregiver on Saturday, July 26, 2014, I have been reading passeges of the book in order to revisit memories of him as a young man and to remember the years he spent with Mike and me. He is in our thougths and prayers daily and it is my sincere hope that his story touches you as deeply as it touched us.

The following excerpt is from Chapter 9 – Confessions of an Imperfect Caregiver.

Whoever wrote in Rodger’s chart, “Intelligence is estimated to be below average,” was very wrong.

Rodger was a serious scholar, described by his younger brother as, “a bookish teenager who took advanced degrees in mathematics and literature at an early age. He tried to help me with my schoolwork, but what came easy for him was very hard for me. He’d try to help me with algebra but he’d go so fast I couldn’t keep up.”

Rodger graduated Summa Cum Laude from college. He spoke six languages, including Latin, Italian, French, German, English, and some Yugoslavian. Remarkable for a man who grew up on a farm in Tornimparte, Italy.

“We raised or grew everything we needed to live. We grew our own wheat, and at harvest time all the farmers would go in together and rent a threshing machine. It would take a long time before all the work was finished, but we did it. Then the women make pasta and bread. Every day, my mother, she get up, make the polenta, and go to church. Then she come home and work all day. She cook, she clean, she open a store in our house. She do all she can to make money. My father, he’s in America working in the coal mines. Life is hard for everybody,” Rodger said.
The family farm included a vineyard, and their homemade wine was sold in the store alongside the produce and bread to keep the farm running and the family clothed and fed.

While Rodger kept the books for both the vineyard and the store, his younger brother helped more in the fields, with the harvesting, and in the gardens. Rodger also did his share of hard work. His shoulder was scarred from a deep cut he received while carrying heavy loads of grapes down a steep hill to be crushed and fermented into wine.

“It hurt like hell, but there was nothing I could do. I had come too far. I couldn’t go back, I had to keep going.” The cut to his shoulder must have been very deep. It damaged a vein in his wrist that remained enlarged and sensitive the rest of his life.

The more I learned about him, the more I admired him. There I was, caring for an extraordinary man whose native intelligence was far beyond my own. He had struggled to help his family survive while still little more than a boy, only to be struck down by an illness few people understand, the treatment of which left him with huge gaps in his memory, making it impossible for him to do anything but menial labor.

It became obvious to me that bits of his superior intelligence remained. Even after all the years of being drugged and probed and experimented upon, he’d managed to build a life and raise a family. Now, in his old age, the deficits were mounting. Sadly, the blessings of his youth, combined with the severity of his losses, would leave him aware enough to know something was very wrong but unable to figure out what it was or why he couldn’t do the one thing he wanted most—take care of himself. The lengths to which he’d go in order to prove he could do it would result in seven years of cat-and-mouse games that tried us both and bound us together through shared experiences that were at times funny, but far too often were frustrating and confusing for both of us.

“It don’t make sense,” was a phrase he used almost daily. More often than not, I had to agree.

To purchase a signed copy fo Confessions of an Imperfect Caregiver contact Second Chapter Books in Middleburg, VA by email secondchapterbks@gmail.com or via phone (540) 687-7016

Avaialable in print or ebook form on Amazon and Barnes&Noble

Was I Crazy?

Crazy lady cartoon for caregiver

“You’re a little bit crazy, you know that?” my father-in-law said.

It wasn’t the first time he’d accused me of being crazy and it sure as hell wasn’t the last. Despite the fact that he’d suffered from mental illness long before age-related dementia set in he was convinced he could take care of himself and I was out of my mind to think otherwise.

Sometimes I agreed with him. About the crazy part anyway. Isn’t it considered crazy to keep doing the same thing over and over expecting a different result?

By that definition we were both nuts.

He figured if he took every opportunity to take off down the hall without his walker whenever my back was turned he’d convince everyone he didn’t need it. After all, he’d only fallen once and it didn’t kill him. I hoped if I kept catching him and leading him back to safety he’d begin to accept the walker and use it without prompting.

When he developed Dysphagia and could no longer swallow regular food and drink, I prepared fresh purees for him every day while doing everything I could to make them healthy and tasty. I learned that a lot of his favorite foods could be prepared that way. It was worth spending a bit of extra time so he could enjoy his own version of whatever meal we were having. Pureed hot dogs and potato salad on the 4th of July. Pureed turkey and dressing for Thanksgiving worked very well. So did the pureed pasta with homemade spaghetti sauce. I’m still proud of the pureed tuna and tomato sandwich and pureed cupcake he often had for lunch. Was I crazy to go to all that extra work instead of ordering prepared purees for him? Hormel makes a line of foods for people with Dysphagia and I did order some of them. But, I didn’t want to rely on them. Eating was one of the few pleasures he had left and I wanted him to experience the flavor of his favorites. He was convinced I was crazy to think food could be dangerous.

“Something’s wrong with her. Food goes in your stomach not your lungs. You can’t get pneumonia from eating,” he’d tell the doctor at every visit. Eventually the doctors tuned him out, not bothering to explain again why he couldn’t have a sandwich or big juicy orange.

Sometimes I couldn’t help but wonder, was I crazy to become a caregiver? Was I crazy to lie awake at night trying to figure out new ways to get through to him? Was I crazy to keep fighting for him and with him when it became clear that no matter what I did or how hard I tried he would continue to fail?

Maybe. But sometimes crazy is what it takes to get the job done and maybe my crazy was just what his crazy needed. I hope so.

For more information about Dysphagia and where to find products for your loved ones click on any of the following links:
http://thickit.com/products/purees/?gclid=Cj0KEQjw5-OdBRDW3ceD9fL0r4QBEiQAW7htXesa0NQ2vOYLfvQkg6Je4E7uLezTgEiuIwXFAHWIHu8aAnrt8P8HAQ
http://www.hormelhealthlabs.com/2colTemplate_product.aspx?page=CO_ThickEasyBreakfast&cond_id=117&cat_id=122

http://www.swallowingdisorderfoundation.com/swallowing-support-groups/

http://www.patient.co.uk/support/dysphagiaeu

http://www.hormelhealthlabs.com/2colTemplate_product.aspx?page=CO_Dysphagia&cond_id=117&cat_id=117

http://www.medicinenet.com/swallowing/article.htm

http://www.mayoclinic.org/diseases-conditions/dysphagia/basics/definition/con-20033444

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