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.

 

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#Dr. Phil – Change Will Happen

Change will happen Dr Phil

Someone posted the picture above on Facebook and I had to copy it and share it with you. Each night before I go to sleep I end my prayers by saying, “Show me the path you want me to take.” The road I end up on is often a lot longer and more difficult to travel than I would have hoped but I always end up exactly where I need to be. I have learned to pay attention to the messages I receive in response. Many, like this one, pop up in the most unexpected places.

On May 26, 2015 I watched a segment on the Dr. Phil Show where he featured young woman caring for her father who has had a devastating stroke. I was thrilled to see a caregiver being recognized. However, soon that feeling was replaced be deep disappointment and frustration when, instead of doing anything help her in any way, he offered her only the same trite advice caregivers know they should follow but have no means to do so.

Take care of yourself first. Get enough rest. Eat right. Exercise. Don’t feel guilty about taking time with friends.

I took a few days to cool down so I could respond without anger and on May 30, 2015 I issued a challenge to Dr. Phil to use his resources and the Dr. Phil Foundation to set up a grant program for caregivers most in need of help. You can the full text of that post here:

Dr. Phil- You Let Caregivers Down and I Challenge You to Do Better

Since then I have been contacting him regularly via his website and adding a few words to my nightly prayer,“Dear God, show me the path you want me to take. Show me the way to reach Dr. Phil.”

And what did I get on my Facebook page but a clear image of a path captioned with this message: “Change will happen because you MAKE IT HAPPEN.” #DRPHIL

I am now more determined than ever to continue contacting Dr. Phil and do everything I can to convince him to get started on the path to establishing that grant.

In order to amp up the volume I ask that you add your voice to my efforts. Let him know I am not alone in asking for help. Please go to www.DRPHIL.com and encourage him to accept the Dr. Phil Challenge. Feel free to include a link to this post.

 

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

 

 

 

 

When You Fall to the Floor and Shatter

shattered

Caregivers and those in their care have been tipped over by the gusts of life.  Many of our loved ones have fallen and broken bones, many more have had memories break away piece by piece creating razor sharp shards of anger and resentment in their place. They lash out at us in their confusion inadvertently causing us to begin to break as well.

Often those around us fail to see the damage these devastating diseases bring about. Too often others see it and choose to “walk around the pieces, lest they cut themselves upon the scatter.”

Today and every day it is my hope that you have someone in your life to glue you back together.  If you are alone in this, know that I understand and I am here for you.

Feel free to reach out to me via the comments section on this blog or privately via email at bcarducci@comcast.net

Caregivers need help. Please join me in continuing the Dr. Phil Challenge and encourage him to use his resources and the Dr. Phil Foundation to create a grant to provide real help to caregivers who need it most.  Go http://www.drphil.com and leave a comment on his website supporting my plea.

 

 

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

 

On the Run Today

Thank You For CaregivingIf you are alone in caring for a family member or friend. If you are feeling unappreciated. Please remember that the Imperfect Caregiver is working for change by speaking out. I am very proud to be a caregiver advocate and today I have two wonderful opportunities to speak for caregivers.

This morning I was filmed and interviewed by Voice of America. In May I was a participant in the Human Book Project held at Gum Spring Library in Aldi, VA. My purpose in being there was to  speak to “readers” who checked out Human Books to learn about their unique life experiences.  I spoke about what is closest to my heart, being a caregiver for a seriously ill family member.  Today another “reader” interviewed me and the short video will appear on the Voice of America website in about three weeks. I will post the link once the video goes live. You will also hear from another Human Book, Maimah Karmo  speak about her very different story of strength and service to others.  I am proud have met Maimah  through the Human Book project and now have her as  my friend.

This evening I will be speaking to people at  the Purcellville Baptist Church in Purcellville VA. about caregiving and how they can help caregivers in our community.

We need more advocates and since I have not yet heard from Dr. Phil in response to my Dr. Phil Challenge, I am very interested in speaking with many more church and civic groups.

Last month I spoke with members of  the Dulles South Rotary Club in Aldie, VA  and they are now developing a service project on behalf of caregivers. (More on that soon.)

I am available to speak to groups  in person or via Skype or FaceTime depending on distance and time available. There is never a charge for these events.

All you need to do is contact me via email bcarducci@Comcast.net to arrange a date and time.

Blessed Be Caregivers

 

 

Today It’s All About You

how do you feel todayKnow that I think of you every day. And pray for you each night.  You are not alone and I truly want to know how you feel today. In fact, I invite you to comment and share your thoughts, frustrations, rants, moments of clarity and grace, the funny stuff and the heartbreaking interactions that bring on that insidious guilt we have all experienced.

Blessed be, caregivers.  Sharing your story may help a caregiver who is feeling very alone.

Join me in urging Dr. Phil to use his resources and the Dr. Phil Foundation to create a grant to provide help and respite for 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

 

 

A Much Nicer Way to Say What I Was Thinking

open your mouth only if

Shut … the … hell … up!  That’s what caregivers would like to say. No not say, scream, when family members drop by for a short visit and begin to offer comments like this:

“She looks fine to me. Why do pretend taking care of her is harder than it is?”

“Mom told me her things are disappearing. What’s going on?”

“What do you mean it’s time to look at placing Dad in a nursing home? I promised him I’d never do that.”

“He’s lost a lot of weight. Why aren’t you feeding him enough?”

“I can’t take her. I have a very busy life. You get to stay home all day and watch TV.”

“I should have known better than to invite you! You always have some lame excuse.”

“We can’t make it for his birthday. We’re leaving for vacation in Italy that day.”

Caregivers, I invite you to share some the absurd things family and friends have said to you. Feel free to also add what you would like to have said in return and didn’t. (If responded with a great comeback feel free to share that too.)

Friends and family members – I challenge you memorize and follow the advice in the quote above. Dr. Phil, that goes for you too.

More Caregivers comment on  the Dr. Phil Challenge to use his resources and the Dr. Phil Foundation to establish a grant to help the caregivers who need it most.

steven chandler – Comment: At 52 I am now a health care provider for my 91 year old father I’ve gone through all my savings is a constant struggle my sister took all of my father’s money in 2006 he was sick at the time and she convinced him to change his will and he gave her all the money I’m here for my father 24 hours a day and If it wasn’t for me the last year and a half he would be dead. I’ve put my life on hold I put my relationship of 8 years on hold and it’s overwhelming at times

Sherri Diller – Comment: I fully agree!!  Dr.  Phil,  just take a look at the state differences that caregivers go through.  Boils my blood.  All types of government agencies claiming to help.  I have worked in a number of nursing homes and I am a single daughter,  caring for her single mom w/stage 4 alzhiermers,,  both from a dysfunctional background.  I love her dearly.  But I dont trust the system.  Your help is so needed.  My mom deserves so much more.  I am all she has.  When she goes,  I am the only one left.

Christina – Comment: Yes Bobbi, I will share your blog post. It’s so important. For some reason the word ‘respite’ goes unheard by many of those who are not caregivers.  I don’t know how many times I was asked what I wanted and I answered the same thing every time, respite hours for myself so I could catch up on sleep or just sit and do nothing. The answer was always, yes, but what else? I was even recommended to take antidepressants! Thankfully I had learned to speak up and stand up for both myself and my husband by the time that was suggested. They never mentioned it again!

As caregivers, even though we most definitely save the state money we are not looked upon as the assets we are. My conclusion to that crazy reality is that we are actually stopping the money from flowing in a certain direction that may be advantageous to some (greed!). My husband would have been in a nursing home years before his passing if I had let them take him. No rime or reason to that since that would have cost thousands of dollars per month compared to a few respite hours for me. Fortunately he never had to go to a nursing home.

Pat DiCesare – Comment: Dr. Phil, I think your audience would benefit from hearing Bobbi Carducci’s amazing and emotional story of her experience of being a caregiver to her father-in-law.

Beth Anderson – Comment – If only there could be a place to go where, at no cost to the caregiver, they could bring their loved ones to, to be cared for, if only for an hour or two. The caregiver could get a workout in, run a few errands or just sit and have some quiet time. I wish you luck in your efforts to help caregivers, but some family members have no idea what that caregiver does, how they feel, what they need or how they struggle with day to day activities. Thank you again.

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Every 26 minutes another person in the U.S. is diagnosed with Alzheimer’s disease or another from of dementia.  The numbers are growing every day. Help me get help for caregivers.

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