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.

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When a Loved One Hears Voices, But No One Is There

Click on the link below to read my guest blog about mental illness on AgingCare.com

http://www.agingcare.com/Articles/when-a-loved-one-hears-voices-165928.htm

If you have a comment or suggestion on dealing with a loved one with mental illness or dementia please post in the comment section below.

He Smiled That Day

It didn’t happen often. Rodger was a dour man with a deeply furrowed brow and a face rutted with frown lines. The landscape of his life, mapped out on the parchment-thin skin of the elderly, was a map of negative emotions. Fear,uncertainty, frustration, disappointment and suspicion all left clearly marked passages across his countenance.

Rodger Dour

There were no laugh lines framing his mouth or crinkly fans of mirth around his eyes. A smile never came easy for him. Sometimes, when someone told a joke or shared a funny experience, I imagined one lying in wait, ready to spring out if only he’d drop his guard for a moment.

Then one day it happened and I was there to see it. For a moment in time he forgot to worry and ceased to contemplate all the things that didn’t make sense.

What brought this on, you ask?

It was nothing really.

The day started, as always, with his slow walk down the steps to the kitchen for his breakfast and morning medication. I took his vital signs and sent them off to the clinic for review via the tele-health monitor and reassured him that there was no bad news.

“Everything looks good. It’s a good day to be happy.” I smiled.

“Yeah happy,” he grumped as he turned away.

“You look good this morning,” I tried again.

“Looking is different than feeling,” he insisted.

“Do you feel bad?” I asked, concerned that I’d missed something.

“No. I’m okay. That’s it.”

That’s it, I thought. That’s all there is for him. When there is nothing to worry about his slate is wiped clean. For a moment I felt like crying. He always looked so tired and sad. Then I remembered that he was fine and it was a day to be grateful. I refused to let his funk engulf me.

“Don’t worry, be happy,” I sang loud enough to startle us both. As the off key words bounced off the walls I started to giggle and watched for some hint of joy in him. But no, he continued up the stairs and shuffled into his room for a nap.

When 11:00 am rolled around and he made his ever so punctual appearance for lunch I expected more of the same. So, as I sat across from him monitoring his intake and reminding him to swallow so as not to aspirate, I was surprised to see his lips moving.

Was he talking to himself or responding to the voices that sometimes made it through the haze of medication designed to keep them silent?

And then I heard it, so soft and low I couldn’t be sure it wasn’t my imagination. I sat very still and waited to see what would happen next. Before long he sensed that I was watching him and slowly lifted his head, seemingly surprised to find me in me in my usual place.

“What’s up?” he asked with all the disingenuous charm of a naughty three year old caught in an act of mischief.

“Are you singing?” I asked, nodding in approval.

“No, I don’t sing, he answered gruffly. “But don’t worry, be happy,” he said with a big grin. And he blushed a delicate pink as he said it.

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If you’ve had a small moment of success or a breakthrough with the person for whom you are a caregiver, please share it here.

LungLeavin’ Day – A Very Special Caregiver Event

Smashing platesThe following email from a loving husband brought tears to my eyes and hope to my heart. Please join me and Cameron Von St. James in celebrating with him and his wife, Heather, LungLeavin’Day.

My name is Cameron Von St. James and I’m a husband to one of the strongest people I know. Eight years ago, after our only child was born, my wife Heather was diagnosed with mesothelioma – a rare cancer caused only by asbestos exposure. My wife’s chronic illness taught us the importance of acknowledging and overcoming our fears, something that prevent us all from living life to the fullest.

This February 2nd marks the 8th anniversary of Heather’s life saving surgery, which involved a risky procedure requiring the removal of her left lung. It is a very special day to me and is considered one of the memorable days of my life! We’ve coined this day as LungLeavin’ Day.

The purpose of LungLeavin’ Day is to encourage and empower others battling their own illnesses and life challenges to face their fears! On this day we celebrate for those who are no longer with us, for those who continue to fight, for those who are currently going through a tough time in their life, and most importantly, we celebrate life! Each year, friends and family gather at our house around a bonfire where we write our fears on a plate and smash them into the fire to represent conquering our fears.

This year, we are asking bloggers to participate in LungLeavin’ Day! We’ve created an interactive page that tells the full story of this special day, which can be found here: http://www.mesothelioma.com/heather/lungleavinday/

I’d love for you to check out the page and consider sharing it on your blog to help spread the word about LungLeavin’ Day! It would mean so much to Heather and I.

Thanks so much for your time!
Cameron

Cameron Von St. James
http://www.mesothelioma.com/blog/authors/cameron/

He Was a Lucky Man

Lucky man picture and quote

Thank you to the Caregiver Space for publishing my guest post.

http://thecaregiverspace.org/blog/2014/01/29/sure-want-decision-become-caregiver/