Touching Words From A Reader

The following is an excerpt from a letter that appeared in my email yesterday. 

Your book is beautifully and courageously written. Your honesty about your own limitations (real or perceived) is human and refreshing and relatable. Your voice of advocacy for patients and families in what sometimes feels like a battle with healthcare professionals is a strong rallying cry and a reminder that in the struggle of priorities, loved ones are ultimately the only advocates whose motives are completely unfettered. You are able to weave in humor where appropriate, and to me that is a reminder that the survivors still have to survive and find a way to cope with change, loss and pain via a means other than tears (especially in retrospect). I laughed and cried shamelessly for the duration, rereading some paragraphs in the final chapters to compensate for my teary, blurry vision. Thank you for this book. I will post the most positive review on Smashwords that I am able. I also have already recommended it to all of my family who suffered the loss of my father by my side.

J.D.

To hear from a caregiver that my words touched him in such a positive way is a gift beyond measure. I hoped it might happen during the days and weeks I relived our story. I am grateful to learn it came true for J.D. Caregivers you are not alone in your actions or your feelings as you do so much for others. Blessed be.

A Fearsome Intimacy

Caregiving Fearsome Intimacy

When we hold our infants in our arms we are filled with awe and hope for the future. We envision a life of promises fulfilled. We never picture them feeding us, holding our hand to keep us from falling, or changing our underthings. I couldn’t type the word diapers. The thought of losing my dignity to such a degree is truly fearsome. In my mind I hear the words, “It’s enough to scare the pants off me.” The irony makes me shudder and chuckle at the same time.

The caregiver and the cared for locked in a fearsome intimacy. I don’t know where the quote above came from. If I did I would give credit here. What I do know is those five simple words speak a devastating truth.

 

5 Halloween Tips for Caregivers

While turning off the outside lights may keep the doorbell from ringing; the chatter of children passing by on the sidewalks and the sound of increased traffic on the street coming at sundown can create a great deal of stress in someone with dementia.

Here are a few suggestions to help ease your loved one into the holiday:

Color a Halloween picture each day leading up to Halloween. http://www.coloring.ws/halloween.html – click on the link for downloadable coloring pages.

Share old photos of his children in costume and ask him to tell you stories about their trick or treat adventures.

Together make simple Halloween mask for the children or grandchildren and one for each of you.

paperplate mask 2

Put together some simple and fun Halloween treats:witch hat cookies

The Witch Hat Cookies

What you will need:

  • Keebler Elf Striped Cookies
  • Hershey’s Kisses
  • Vanilla Frosting
  • Orange Food Coloring

Recipe:

  1. Mix Vanilla Frosting with orange food coloring, put the frosting in a zip lock bag, and cut off the corner to make a piping bag.
  2. Flip over the Keebler Elf Cookie and apply a nickel sized portion of frosting.
  3. Press the Hershey’s Kiss down onto the frosting and cookie.
  4. Let harden, and enjoy!

People with dementia enjoy music from their past. Listen to some playful Halloween music and share memories of sock hops and parties they attended.

Purple People Eater

Monster Mash

Witch Doctor (Ooh Eeh Ooh Ah AAh Ting Tang Walla Walla Bing Bang)

Addams Family Theme Song

If none of this is possible for you, that’s okay. Give yourself a treat and refuse to feel guilty. You are faced with plenty to deal with every day.   Blessed Be.

 

 

 

 

 

 

 

 

Giveaway for Caregivers

Caregiver Bracelet

Free to Followers of The Imperfect Caregiver

(US Residents Only)

Caregivers need all the support they can get. One way to increase awareness is to show the world how many of us there are, including caregivers, those who have been caregivers, and those who may become caregivers.  Our numbers grow every day and will continue to increase until cures for Alzheimer’s, all the other forms of dementia, and traumatic brain disease are found.  One way to do that is to display our support for all to see.

To receive a free Caregivers Are Heroes bracelet: Follow The Imperfect Caregiver blog and send a request in the comment section below. Include your name and complete mailing address. Address will not be published on this site.   Requests may also be sent to me directly via email at bcarducci@comcast.net  No mailing costs or hidden fees apply. This is my gift to individual caregivers.  Current followers are eligible for this free gift.

Dr. Phil, we need your help! Please use your resources and that of the Dr. Phil Foundation to create a grant to help caregivers most in need receive the help and support they so desperately need.

To add your voice to mine contact Dr. Phil at www.DrPhil.com

 

 

 

Remembering Rodger

Rodger Carducci

 July 26, 1926 – July 26, 2009

001

A year ago today I celebrated with family friends the release of Confessions of an Imperfect Caregiver.  The day was one of joy mixed with sadness as were so many of the days I spent writing it. We chose to release the book on Rodger’s birthday to honor him and his life.  I knew when I decided to share our story I would experience again all the emotions of living it. I told Mike to be prepared for an emotional rollercoaster. He knew all too well what that meant. He lived it too and would have his own moments of joy and regret. However, we agreed it was important to speak the truth about what it’s really like to be a caregiver.

I was determined to be brutally honest. I included the good days, the days of precious moment of clarity and remembrance he chose to share with us. However, I  also share the many moments of anger and doubt. I cry and pray and vent the frustration that comes with doing the best you can in an impossible situation for someone who sometimes loves you but far more often resents you for trying to save them from themselves.

Caregivers often asked, “Why doesn’t someone write a book that shows what it’s really like?”  Confessions of an Imperfect Caregiver does that. Caregivers,  you know what it’s like. You live it every day. It is now my wish is to get into the hands of your friends and family members in the hope that, in reading our story, they will better understand your situation and offer to help in any way they can.

Confessions of an Imperfect Caregiver is for caregivers, those who may become caregivers, those who have been caregivers and those who may one day need care. I hope our story helps everyone understand that you don’t have to get it right every time in order to succeed and sometimes being a little bit crazy is exactly what is needed. Available via Amazon and Barnes&Noble. To purchase a signed copy you are invited to contact Second Chapter Books in Middleburg, VA (540-687-7016) or via email: secondchapterbks@gmail.com

 

Caregivers Are Beautiful

beautiful woman

Caregivers are unique in every way. It is the caring we do that brings us together and links us in a way that cannot be broken. Know that the Imperfect Caregiver understands how special you are, even when you believe you are failing. Blessed be.

Dr. Phil, Help the Caregivers who need it most. http://www.drphil.com

Winner, Winner

find some humor

Sometimes all you can do is laugh. The following is an excerpt from my book, Confessions of an Imperfect Caregiver.

When he first came to live with us, the only things he asked us to buy for him were Milk of Magnesia and prune juice. He had prescriptions for stool softeners and laxatives issued by his former doctors and continued by his new doctor. He constantly complained of constipation, greeting everyone he spoke to, including strangers, with “Hello. How’s everything? My bowels don’t move.” If he did happen to go, he made sure he told them about that as well, in great detail. It soon became clear he was taking far too much of the stuff. Every day, in the morning and at midday, he’d drink a large glass of prune juice, followed by Milk of Magnesia. Often he’d wait a few moments after taking it, look at his watch, and take some more. A few moments later he’d do it again. One day, after just telling me he’d had a bowel movement, I saw him drink another large glass of prune juice and reach for the Milk of Magnesia.

“Why are you taking that? “ I asked.

“For the constipation,” he said.

“But you just went.”

“That don’t count. It was all liquid.”

That’s when I knew I had to do something. No matter how we tried to explain it to him, he wouldn’t accept that it was the laxatives that were causing his problem. The more he took, the worse it got—and the more he worried—resulting in a vicious cycle that was interfering in his normal bodily functions. His psychiatrist said that it’s not unusual for a schizophrenic to keep track of what goes in and out of his body. In his mind, solid food was going in but nothing solid was coming out. That meant something was very wrong. Once I began to limit his access to prune juice and Milk of Magnesia, and started monitoring his use of laxatives, he started showing signs of stress. He paced and muttered to himself and began making frequent trips to the bathroom where he’d sit for hours, waiting for something to happen. I hated to see him like that, but I had to ease him off the stuff. His doctor tried to help by telling him that taking too many laxatives could interfere with his other medications and land him back in the hospital. He wasn’t buying it. When I wouldn’t give in, he complained to Mike, and when Mike backed me up, he called him one of the worst insults he could think of.

“You’re nothing but a dictator! You’re another Mussolini, that’s what you are!”

Later, after Rodger calmed down and we were getting ready for bed, Mike looked over at me and shook his head. “Mussolini? Now I’m Mussolini?”

I couldn’t hold it in any longer. The giggles I’d been trying hard to stifle came rolling out. “The Mussolini of laxatives!” I laughed harder. “You Fascist poop dictator!”

Mike looked at me in confusion for a moment, and then the hilarity of the situation hit him and he was laughing as hard as I was. I laughed so hard I got the hiccups, and that made us laugh even more. We ended up rolling on the bed, laughter feeding more laughter, until we were exhausted.

“Oh wow, I needed that,” I said when I was finally able to catch my breath.

“Me too,” Mike agreed. “I don’t know how you do it every day. He’s so damned stubborn. I’m glad I’m not like that.”

“Right.” I poked him the ribs. “Me either. I’m not stubborn. I’m determined.”

“Yes, dear,” Mike said with a grin. “Do you think you can determine to keep loving me through all this?”

“Sure, if you can determine to come over here and give me a kiss.”

“Sure thing, Babe.” He enveloped me in his arms and kissed me, both of still chuckling.

If you’ve have a winning moment that laugh you laughing, I invite you to share it here:

And if you want to vent – Please join me in pinging on Dr. Phil to use his resources to help caregivers via creating a grant for respite care and other kinds of help for caregivers who need it most.  Send him a message at www.drphil.com

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

 

 

 

 

Caregivers Three

Cargivers Three 3                                                           Bobbi, Gregor, Erica

When I started The Imperfect Caregiver blog I did it because I had felt so very alone during the time I was caring for Rodger.  There didn’t seem to be anyone I could talk to who could possibly understand how hard it is to do this.  It is also why I decided to write the book, Confessions of an Imperfect Caregiver. It was my hope that in writing about what it’s really like I could send a message to caregivers everywhere that someone does know. I am here and I do understand. I feel the emotions that course through you on the good days and the bad days. And there are so many bad days as the diseases progress and those in our care slip away memory by memory, piece by piece.

As I reach out to people in the caregiving world online and in person, the caregivers and those who write about caregiving, I am blessed to meet some amazing people and learn their stories. The more I hear from you and them, the more I learn and am able to share here and in the books to come.

Last week my husband and I traveled to New York City to see a staged reading of The Accidental Caregiver, a play based on the book by the same name, written by Gregor Collins. His story of caring for Maria Altman is vastly different than my story and, having read the book and seen the play, I imagine it is very different than that of yours as well.  They met as strangers and came to love one another as family, she in her 90s, and he in his 30s.  A unique story for sure.

The trip also provided and opportunity for me to finally meet in person another caregiver who bravely shares her story. I met Erica Herd online during the time I was completing Confessions of an Imperfect Caregiver. Erica is a caregiver for her mother who is in a care facility. She is the author and solo performer of the play, Alzheimer’s Blues. Imagine reliving your story in front of audience over and over again. How brave and special that is.

I am grateful to have them as friends and proud to introduce you to them here.

Caregivers, your story is important. Please feel free to share some of your here.  And please, help ,e help you and others by adding your pleas to mine as I challenge Dr. Phil to use his resources and the Dr. Phil Foundation to establish grants to help caregivers most in need.

To Contact Dr.Phil and add your voice to mine click on the links below.

http://drphilfoundation.org/

http://www.drphil.com/

@DrPhil

https://www.facebook.com/drphilshow?fref=ts

 

Do Not Believe All The Things You Tell Yourself At Night

sleepless woman

I know the voice of doubt. It comes in the night to question and criticize. It tells us we are not good enough or smart enough to do this.  It may come as a whisper or scream unceasingly. Either way it keeps us awake going over the activities of the day.

“How could you lose your temper you know he’s sick?”

“I can’t believe you said that to him.”

“How could you forget to tell the doctor about that?”

“You think you’re so smart, why is she getting worse every day?

Yes, I know the voice of doubt. I know how we question ourselves all the time. We expect so much of ourselves it’s impossible to live up to our expectations.  When family members do it we know they are full of s**t and we get angry. When we do it to ourselves we start to believe. We lose precious sleep judging ourselves harshly.

I know the voice of doubt. She whispered to me every night. She lied.  I hope by writing this post I will be able to convince you that the voice keeping you awake at night is no better than mine was.

You are a caregiver and you do not have to be perfect to do what is best for the person in your care.  And, sometimes being a little bit crazy is exactly what is needed in the moment.

What are some of the things you say to yourself late at night? Share them here. It may help you and other caregivers silence the voice and allow you to rest when you can.

I continue to plead with Dr. Phil to use his resources and the Dr. Phil Foundation to create a grant to provide caregivers with assistance.

To Contact Dr.Phil and add your voice to mine click on the links below.

http://drphilfoundation.org/

http://www.drphil.com/

@DrPhil

https://www.facebook.com/drphilshow?fref=ts

 

 

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