Caring Takes Courage

Lion  Quiet Courage

Caring takes courage. The courage to open your home and heart to what is to come. The courage to advocate fiercely for those in your care. The courage to know the day may come when you will hear the words, “Who are you?” from your mother or father.

Sometimes it takes every ounce of your brave spirit to get up and face another day of doing this. Yet you do. You continue even when you feel a desperate need to run away from it all. There may be days when you do roar. When you rage against these terrible diseases. When you fight with your spouse over the unfairness of it all. Or in the dark moments when you lose your temper with the one in your care. Yes, it happens to you and it happens to others.

It happened to me. When it did I cowered in shame. When had I become weak and nothing but a coward afraid of what another day would bring. I cried. I prayed. I vented and I cried some more.

Finally, as the tears fell, washing away some of the stress, my strength grew and I heard that little voice again and I slept allowing me to regain the courage to try again tomorrow.

Don’t forget to help me gain the Attention of  Dr. Phil. Join me in encouraging him to accept the Dr. Phil Challenge to establish a grant through the Dr. Phil Foundation to provide respite and assistance to caregivers who need it most.  Go to the Dr. Phil website and leave a comment at http://www.drphil.com

 

 

 

 

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Good Morning Caregivers – I May Not Be Perfect

I may not be perfect

If I am able to help you understand anything by way of this blog or my book I hope it is this:

I AM NOT PERFECT AND THAT’S OKAY

We are human.  We become angry sometimes. We feel resentful when others go off on vacation or simply out to dinner and we can’t. We get sick and tired of hearing the same question over and over. We need sleep and get cranky when we don’t get enough. Our heart breaks when the one we are trying so hard to help accuses us of mistreating them or stealing from them. Or worse yet, don’t remember who we are.

Some days we want to give in, give up, and let go so badly we nearly fall apart. And then we feel terrible. We doubt ourselves and become convinced we are bad people.

We are not. We are the caregivers. We are not perfect. We are human. We give all we have and then give some more. Y

You, like me, are not perfect but no one is.  You are a caregiver and because of you the one in your care will have many more good days than he or should would have had otherwise.

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I Knew It Would be Hard But …

taking-a-test

We thought we knew what to expect. Having an elderly parent living with us would change our life, we knew that. We also knew that Rodger was quirky and had a number of health issues.

“It will be hard but we can do it.” Mike and I agreed. “He will improve in our care.” Boy oh boy were we mistaken.

As his primary caregiver I soon learned that I had a lot to learn and I had better learn it fast.  I needed to understand his medications and their possible side effects and interactions. I had to recognize that often he reacted exactly opposite of the norm. If a medication came with a warning that it caused drowsiness he would be up all night. Add a medication to lower his blood pressure and it would soar. It was weird and frightening.

I had to learn that he was often secretive and hid his symptoms when ill or in pain.  Over time his illnesses increased in number and severity. What the heck is sundowning and why was he so aggressive in the evening?  What happens when mental illness and dementia combine? Would he harm himself?  How could I convince the doctor he had Parkinson’s disease when he stopped shaking and sat up straight and told the man I worry too much and not to pay attention to me?

I had to learn how to convince medical personnel to listen to me, not him, when answering questions about his behavior or the newest setback in his ability to remember or reason. He forgot or he lied, it didn’t matter which.  The fact is he tried hard to fool them and often succeeded.

“She’s crazy,” he would tell them. Often it was close to the truth.

I didn’t try the same thing over and over expecting a different result as we know is sign of insanity. I became as creative as I could be when problem solving. I was ever vigilant in watching for unexpected symptoms. Still,many times I was close to losing my mind in frustration.  When no matter what I did and no matter how hard I tried he kept getting worse I had to learn I could not stop this process. I had to learn that by giving him more good days then he would have had otherwise was the best I could do and that was enough. That’s a test I could not have studied for. I had to live it. I had to learn that he was unique and while many aspects of caregivning are the same, every person is different.

Caregiving is a test we can’t study for. It’s by sharing our stories and our unique ways of problem solving that we learn and I am grateful for each and every one of you who shares a bit of your journey with the rest of us. I’d love to hear from you.

 

 

 

 

 

 

 

 

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

“Fine” Is Not An Answer

“How are things going with Rodger?”
“Fine.”

“It must be hard.”
“It’s fine.”

Are you taking care of yourself?”
“I’m fine.”

“How is Mike dealing with all this?”
“He’s fine.”

“Do the two of you get any time away?”
“No, but we’re fine.”

So often when questioned by people, even the most well-meaning, Caregivers say they are fine. It’s time to stop. FINE is not an answer. It’s what we say when the person asking has no real interest in the answer or has already proven that they are too busy, too disconnected, or too frightened to deal with what’s happening.

Saying we are fine when we are not is a social norm that works most of the time. Why bore someone with details of our life when they are busy with their own problems and they only ask about ours to be polite?

How often do we greet friends or acquaintances with the words, “Hello, how are you?” Both parties know full well that we aren’t asking for details and the proper response is, “I’m fine. How are you?”

As a caregiver I was guilty of saying it all the time. When I was so sleep deprived I could barely function I carried on trying to convince everyone, including myself, that I was fine and I’d sleep when the latest crisis had passed. When month after month of stress took a toll and triggered a panic attack, I breathed through it and went on. “I’m fine now,” I’d say once it was over. After a terrible argument with my husband, brought on by the same lack of sleep and buildup of stress, we patched things up and promised not to let it get to us again. We had a solid, loving marriage and we were simply going through a rough patch that would not last forever. We were fine.

Rodger was declining and his need for care was increasing all the time.
Being a caregiver was very hard.
I was not taking care of myself and the stress was taking a big toll on me.
Mike was not fine no matter how hard he tried to pretend he was.
We needed time away and would have given anything for someone to take over even for one day.

I wonder what would have happened if I had responded truthfully.

“How are things going with Rodger?”
“Not good. He is getting weaker all the time. He hates being dependent and it makes him angry. He takes it out on me.”

“It must be hard.”
“It’s very hard. I feel very alone most of the time. I miss spending time with my friends and the people I used to work with.”

“Are you taking care of yourself?
“There’s no time for that. I had to cancel my last three doctor appointments to rush Rodger to the hospital when one of his illnesses worsened. Most days I eat on the run and shower so fast I barely get wet before I have to dry off and tend to his needs.”

“How is Mike dealing with all this?”
“He is doing the best he can to be there for both Rodger and me and go to work every day. On the weekends he does all the shopping and runs all the errands that need to be done. He helps with Rodger in the evenings. There is no rest for him either.”

“Do the two of you get any time away?
“No. We need a rest but we don’t know where to turn for help.”

Would anyone have offered help and a bit of respite if I had not kept reassuring people that I was fine? I will never know. You can find out. If anyone asks how things are going, I hope you remember that fine is not an answer and give them a chance to respond to the truth. I’ll be very interested in learning how it goes.

Note: Caregivers with little or no outside support often suffer from depression. Click here to read an article about caregiver depression at Caregiver.com, Coping with Depression: Signs You Might be in Trouble

caregiver card

Please Stop Telling Caregivers To Take a Break

Almost every website or blog for caregivers includes a number of posts advising readers to take care of themselves.

Most lists will include some version of the following:

Get plenty of rest.
Eat healthy.
See your doctor regularly.
Don’t try to do it all yourself.

doctor and patient

Some lists suggest a bit of pampering:
Take a bubble bath.
Get a manicure.
Put on some music and dance your stress away.
Put your feet up.
Go on vacation.

girl dancing

All of the above are excellent suggestions. When I was an in-home caregiver I longed to follow their advice and I believe the caregivers now reading your posts do as well. I also know how hard it is to have well-meaning people tell you what to do. What caregivers wonder is why people expect them to add more to their already nearly impossible list of things to do.

I remember how exhausted I was as a new mom. I walked around the house in a sleep deprived daze, my hair uncombed, teeth not brushed until late in the day. My clothes were often wrinkled and spotted with unidentifiable bits of stuff. I felt like crying much of the time.

Things were much different for the precious darlings in my care. They slept for hours during the day. Their tummies were full and their tiny sleepers were soft, warm, and clean. I often stared at them as they dozed, thanking God for bringing them into my life. I also remember that just as I was about to lie down and take a nap or grab a bite to eat, a heart wrenching wail would ring through the house and all thought of caring for me disappeared. People commiserated. Friends shared their own stories of caring for a newborn and some kind people brought casseroles so I didn’t have to cook. No one suggested I get plenty of rest, take a bubble bath, give myself a manicure or go on vacation. If they had I would have either laughed or cried, depending on the moment. Eventually things did get better. The baby slept through the night and so did I. My infant became a toddler and while life remained hectic it became manageable.

Replace the word mom with caregiver and a loved one’s name for the infant in the passage above and you get an accurate picture of life for a caregiver. The difference is, for a caregiver the cycle is reversed, toddlers become infants and infancy can last for years.

Sleepless nights, hour or longer feedings, frequent changes of bedding and adult diapers and tantrums become daily occurrences lasting for years not months. When I was able to get someone to come in for respite care Rodger punished me by acting out for days or weeks afterward. Often his temporary caregivers gave in and allowed him to feed himself and he’d aspirate and end up with a respiratory infection that landed him back in the hospital. His medication schedule would be disrupted and his daily routine would spiral so out of whack that he’d be a nervous wreck. Everything that went wrong and every new thing introduced caused some sort of regression either physical or mental. It became more and more difficult to determine which was worse, going without respite care or dealing with the aftermath.

I knew I had to take care of myself. I knew I needed to rest and take a hot bath, see my doctor for a checkup and go on a vacation with my husband. I knew the people offering advice meant well. What they didn’t understand was how much it would cost me to do as they said or how guilty it made me feel knowing somewhere down the line things would catch up with me.

Big Turkey! – Moments in Caregiving

Some moments in caregiving linger on and bring a smile to one’s face long after they happen.

From the first moment he saw her, Rodger was head over in heels in love with baby Ava. When he found out we would be going to my daughter’s house each morning after the birth of her first child, he was up and ready to go before sunrise every day.

“What time do we go?” he asked as soon as I wandered into the kitchen and reached, bleary eyed, for a tea bag and my microwaveable cup.

“Not for while yet. You have to have breakfast and take your medication. I need to take a shower and get dressed. And besides, the new mom and dad need time to get going in the morning too.”

“They need us. We have to go.”

Knowing he would pace and worry until we got there, I sipped my tea on the way to my room, showered as fast as I could and pulled on a sweat suit. My hair was hopeless. I put it in a pony tail and grabbed a baseball cap to cover it. Then I packed a bag with his medications, a blood pressure monitor, thermometer, stethoscope, his nebulizer, band-aids, Depends, a change of clothes, and some food I knew he would eat. Just like I used to pack a diaper bag for my daughter when she was a baby and she would now do for her child.

As soon as we arrived he went straight for the baby who was nestled quite contentedly in the arms of her other Grandmother.

“I’ll hold her. I know what to do,” he said, his tone of voice a clear indication he disapproved of her technique. Fortunately, my daughter’s mother-in-law was amused rather than offended and helped get baby and Great-grandfather settled comfortably in the overstuffed chair he preferred.

IMG_0288

And so it went. If the baby wasn’t being fed or changed, he wanted to hold her and he wasn’t shy about chastising any of us for taking too long to hand her over. Often I would look over and see her deep blue eyes staring into his faded brown ones and thank God they had this time together. Was she transferring innocence to him as he silently shared his wisdom with her? I like to think so.

Lots of pictures were taken by proud parents and grandparents, of course.

One day, not long after our help was no longer needed, I gave Rodger one of the photos. In it, he was sitting in that overstuffed chair holding Ava who was wrapped in a beautiful pink blanket. I knew he missed her and waited to see him light up when he saw her. He stared at it for a few seconds, a puzzled look on his face and said, “That’s me.”

“Yes, that’s you.” I answered.

He looked at for another few seconds before the smile I was hoping for appeared. He tapped the picture and pointed to the baby and announced, “Big Turkey. Happy Thanksgiving!”

The proud new mama wasn’t thrilled to think anyone could mistake her baby for a turkey but now that time has passed and Old Grampy, as Ava now calls him, is no longer with us, it’s one of the most precious memories we have of him and the little girl he loved so much.

As you can see, Ava looks nothing like a turkey.

Ava Dancing Queen

If you have an amusing story about a moment in caregiving, please share it here. I’d love to read it.

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