Sometimes Caregiving Looks Like This

Pull Up Big Girl Panties

There were days when I felt more like the mean girl than the patient saint some believe caregivers to be. I didn’t want to do it any more. I got mad. I hollered back when he shouted at me. I regretted it the moment it happened but let’s be honest, this is what caregiving is like some days.

I have to admit I never looked that good when going through it. I more closely resembled the image below, right down to the scraggly plumage. But, I couldn’t resist posting this image. I love her attitude.

Rough Week

 

It is critical that we address the realities of caregiving  and not sugar coat it.We have to do everything we can to support the over 65,000,000 caregivers in this country and the millions more who will become caregivers very soon.

 November is National Caregivers Month. The President has issued a proclamation in support of caregivers. Caregiver conferences are being held across the country. It’s time to talk less and provide more help. Our legislators would do well to read caregiver support sites and hear from the caregivers themselves. Feel free to start by sending them a link to my blog.

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NaBloPoMo November 2014

You Held My Hand

 

As a child you held my hand

Hands reaching for one another speak to me as you can probably tell from this image as well as the images on the cover of Confessions of an Imperfect Caregiver and my business card. They remind me of the innocence of my childhood and the many times I reached for the hand of my mother or father and the sense of security their touch inspired.

And of course I’ll never forget the first time I held the hand of one my four babies. The tiny fingers would wrap around one of mine as we bonded body to body. I held their hand when they took their first wobbly steps.  When they prepared to walk into school for the first time I felt the loss as their grip loosened and they began to slip away from my protection.

Now I hold the hand of my loved ones as we take our final steps together and although it is the hardest thing I’ll ever do it is a gift I will not shy from.

As a child you held my hand … Now is my turn to hold yours.

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NaBloPoMo November 2014

Keeping It Together

focus on what holds you togetherAt the end of the day I spent so much time going over what  I might have done better and trying to figure out how to fix an unfixable problem I lost sight of the truth. Together we were doing our best and that was all anyone could ask of us. 
 
Caregiver, be kind to yourself you are doing something wonderful every day.
 
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NaBloPoMo November 2014

Please Make It Stop

melting clock “What time is it?”

“11:00 in the morning.”

Thirty seconds later – “What time is it?”

Thinking he didn’t hear me I told him again. “11:00 in the morning.”

Thirty seconds later – “What time is it?”

I sighed and turned down the sound on the TV and repeated the time once more.

Thirty seconds later – “What time is it.”

Then I knew. He’s mind was stuck in a loop. Before I understood what was happening I would get frustrated and angry with him. He would go on like that for hours. Why the hell did he do it? Didn’t he know it was annoying as hell? I was convinced he did it on purpose in order to get attention or to get back at me for controlling him as he often accused me of doing.

Then I learned more about dementia and how the brain works. He wasn’t doing it on purpose. He could no more stop repeating himself than a scratched old record album could stop from skipping when the needle reached a flawed groove. (If you’re too young to understand that reference, ask a baby boomer, he or she will explain it to you.)

Once I understood what was happening I was able to figure out what to do. I had to move his thoughts past the flaw in the groove so they could move on to the next section.

“What time is it?”

“It’s almost time for lunch. Are you hungry?”

“No. What time is it?”

“It’s time to wash your face. Here is a warm cloth.”

The distraction helped for few minutes and then he asked again, “What time is it?”

“It’s time to fold these towels. Will you help me?”

“Yes. I have to do something sometime. It’s not good to sit and loaf all day.”

A few minutes pass in blessed silence as he folds the towels and I take them an unfold them to keep him occupied.

And then it happened. He looked up from his work and said, “My mother, she washed clothes on Monday. Monday was wash day.”

As he folded all the towels one more time he began to relate another memory of his youth. The needle had moved on and the result was truly music to my ears.

Note: It may take a few moments and some creative answers to move your loved one out of the loop but if you keep trying it will work and cut the time you both have to deal with to minutes instead of hours.

Does your loved one get stuck in a loop asking the same question or saying the same thing over and over? How do you handle it? I’d love to hear from you. Post your response in the comment block below.

 

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NaBloPoMo November 2014

 

How Much Can We Handle?

broken caregiver

It’s a sad truth that being a caregiver can break us. We don’t need to read the statistics to know that caregiving comes with a cost to our health, our relationships and our self-esteem. We do a job we know will end in incredible loss. We cannot win no matter how hard we try.

Those who don’t understand criticize our decisions and question our intentions during brief visits where the person who called us vile names and lashed out at us all night sits smiling quietly and complains about how we treat them.

And so we break. Sometimes for just a moment or two, other times we pray for days to find the strength to face the morning and start anew. And for some it all becomes too much and we become ill ourselves.

In my case as things became more complicated and the stress built I had panic attacks and migraine headaches. My hair began to fall out. I needed respite care. As a disabled veteran receiving all of his care at a VA hospital Rodger was entitled to receive care in the hospital for up to 30 days a year, no longer than 14 days in a row.  We used it when we could but there came a time when we were told there were no beds available and respite care was suspended.  I was desperate for rest and kept asking only to receive the same answer.

“There is no room.”  That is until the day I spoke these words, “I need respite care for his sake and mine. If it can’t be arranged I will call my congressperson and if that doesn’t work I will have to admit him to the VA hospital nursing home permanently.”  Two days later a bed opened up and we both got the break we needed.  It shouldn’t have come to that. I know many caregivers don’t have that option and for them taking a stand will not make respite care available. We need to change that or there will be many more broken caregivers and who will care for them?

The following is fromCaregiver.org

Impact of Caregiving on Caregiver’s Physical Health

  • While researchers have long known that caregiving can have deleterious mental health effects for caregivers, research shows that caregiving can have serious physical health consequences as well, 17% of caregivers feel their health in general has gotten worse as a result of their caregiving responsibilities.
    [AARP Public Policy Institute Valuing the Invaluable: 2008 Update. The Economic Value of Family Caregiving]Updated: November 2012
  • Research shows an estimated 17-35% of family caregivers view their health as fair to poor.
    [Valuing the Invaluable: 2011 Update, The Economic Value of Family Caregiving. AARP Public Policy Institute.]Updated: November 2012
  • Those who are more likely to rate physical strain of caregiving “high” are female (17% vs. 10% males) and older (21% are 65+ vs. 11% at 18-49). They have lower incomes (19% vs. 11% of those with an annual income of $50,000+), a higher level of burden (31% vs. 9%, of those with a moderate level of burden and 5% of those with a low level), and are living with their care recipient (29% vs. 11% who don’t live together).
    [National Alliance for Caregiving and AARP (2009), Caregiving in the U.S., A Focused Look at Those Caring for Someone Age 50 or Older, Bethesda, MD: National Alliance for Caregiving, Washington, D.C.]Updated: November 2012
  • 11% of family caregivers report that caregiving has caused their physical health to deteriorate.
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC.]Updated: November 2012
    • 21% of older caregivers caring for those 65+ report a higher degree of physical strain, compared to 13% who are younger.
      [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S: National Alliance for Caregiving. Washington, D.C.]Updated: November 2012
    • Women (16%) more than men (11%) report having more stress in caregiving responsibilities, (4-5 on a 5 point scale).
      [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S: National Alliance for Caregiving. Washington, D.C.]Updated: November 2012

 

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NaBloPoMo November 2014

The Face in the Mirror

Caregiver in the mirror

Image Courtesy of the Caregiver Space

Reflections on Caregiving

by Bobbi Carducci

The face in the mirror evolved as you did. When you came to live with us I gazed on eyes full of hope. In my care you would do well. When you needed anything, I would provide it. We would share our stories and laugh or cry when feelings overcame us in the telling. For a time we did well.

Everything changed.

The face in the mirror reflected worry lines etched deep into my forehead. What was I doing wrong? Day by day, month by month, you slipped away. Would you know me today? When your memory left me behind, where did you go? And when, if ever, would you be back?

Time passed.

Eyes rimmed in black stared back at me. No sleep. Constant stress. You needed all I had to give and more. What we were to do, the two of us? We were at cross purposes fighting the same battle. You were determined I would not win. Every night I cried.

You are gone.

The face in the mirror is forever changed. In your living and your passing you left your mark on me. All the fear and loss, hope, love and laughter are reflected in my eyes. Every night I pray for you and hope you do the same for me.

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NaBloPoMo November 2014

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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NaBloPoMo November 2014

Pick Out the Splinters

splinters in your butt

Caregivers, you know who I mean. The people who call to question and criticize what you do and how you do it.  The family members who drop by once or twice a year and spend an hour or so before heading out  to a restaurant for dinner or leaving on a fabulous vacation.  The ones who can’t help you because seeing Mom or Dad like that is too hard for them.

These are the same people who say, “Please let us know what we can do to help,” but are never available when you need someone to take over for a day or two so you can get some much-needed rest.

We have all dealt with the splinters. If we don’t pick them out in time the wound caused by their careless dismissal of us and our loved one festers and makes life even more difficult for us.

I hope when that happens you will remember this funny little cartoon and smile and feel a bit better, even if only for a moment. You are not alone.

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NaBloPoMo November 2014

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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NaBloPoMo November 2014

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

 

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