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.

 

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 Address will not be published on this site.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

 

#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.

 

NO!

No

NO! Two letters that exude tremendous power. It’s easy to say and has a huge impact. It soon becomes a favorite word for people in our care.

It’s time to eat. Are you hungry?

No.

It’s time for bed. You need to rest.

No.

Bath time.

No!

Food they loved yesterday they want no part of today. Bedtime becomes something to be avoided at all costs. Take a bath? At the very suggestion a temper tantrum is bound to ensue. This is how it often is for them and for us. And it’s so damn frustrating for everyone. Admit it, you get mad. You begin to think they are doing this on purpose to get back at you for some unknown reason. You want to cry and scream and throw a tantrum of your own. I did. I did all of that and it didn’t help one damn bit. And after my little tirade had ended the guilt set in. How could I behave like that? He was sick. He couldn’t help it. What was wrong with me?

The answer to that is, nothing. Nothing was wrong with me and nothing is wrong with you.

The fault can be found in this quote from the 1967 film Cool Hand Luke

“What we’ve got here is a failure to communicate.”

People with dementia often do not understand the question and don’t know what to say in response and as a result take the easy way, or in this case, the easy word, out. NO becomes automatic.

When they can’t tell us what they are thinking or feeling their behavior becomes their way of communicating. What would you do if you couldn’t tell someone you were hungry, afraid, cold, or too hot? What if they kept asking you questions in a language you could not understand?

I know I’d become angry and want nothing to do with them. I’d dig in my heels and refuse to cooperate. I’d also hope that someone somewhere would figure out what I needed or wanted.

Sitting here now, writing about it instead of living it every day, I hope to be able to help you.

Diffuse, diffuse, diffuse, is always the answer. Like everything else in dementia world it isn’t easy. It’s simply what is.

If they say no to food take it away and offer it again a half hour later. Don’t ask if they want it, put it in front of them and walk away. If they have to be fed, get them ready and start feeding them. If they refuse again walk away again. Go back a half hour later and say, “I prepared the food you asked for. Here it is.” This worked for us until it didn’t. There came a time when he stopped eating altogether. It broke my heart and it will yours too but it happens when they are preparing to go. It’s time for hospice.

The sleep problem is one of the hardest for us all. They need and want less sleep, we need more in order to care for them and ourselves. If you are alone in this you have to rest when you can. If that means the housework goes, so be it. I wish I had an answer for this. I don’t. If anyone does, please post it here.

Rodger would refuse to bathe and wear the same clothes for days at a time. He would begin to smell bad. He insisted that people in the Old Country (Italy) don’t wash as often as people in America. There was no convincing him otherwise so I stopped trying. He would take a shower and change his clothes before going to the doctor. I used that a lot. He never realized he had a lot of canceled appointments after bathing. Sneaky but effective.

When he could no longer shower by himself I would start the water running, put his shower seat in the tub, and warm some towels in the dryer and lead him into the bathroom. When he saw everything was ready he didn’t resist. This may not work for everyone but it may work for some.

I recently read that water is invisible to some people with dementia. They don’t want it on them and they don’t want to drink it. I don’t blame them. I wouldn’t want some invisible substance pelting me either. Nor would I want to put something I couldn’t see into my mouth. It’s up to us to figure out a way to help them understand what’s happening. Use a shower wand and let the warm water flow over their feet until it is okay to move up the body. Keep the spray away from their face. If modesty is a factor allow them to shower in their underwear. They will get clean, the underwear will get wet and they will take it off and put on a clean set.

When it comes to drinking, try adding a few drops of juice in the water to give it some color.

Even if you try these things and they work, the NO! won’t go away entirely and all of this may be a bust for some of you. I understand that your situation is as unique as the person in your care. If there were a magic answer we’d all use it and this blog would go away. I’d miss it but I would celebrate too.

If you have a tip, a hint, a suggestion that works for you I invite you to share it in the comment section. We need all the help we can get and we need each other. Blessed be.

Don’t let Dr. Phil say NO to the Dr. Phil Challenge. Join me in pinging on him to use his resources to establish grant funds to help caregivers who need it most. www.DrPhil.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

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

 

Out of Order!

out of order sticker on my head

Wouldn’t it be nice to do just that? I know most of you can’t but it’s a wonderful thought, isn’t it?

When I saw this print I smiled. Not only at the sentiment but at the determined look on the duck’s face. And look at his stance. He means business.

“I’ve had it! I have been pushed to my limits and I’m done!” is what I see in this picture. There is no way to tell if he actually did what he felt like doing but I bet it felt good to announce his feelings to the world.

I had many days when I felt exactly like he does. I wanted to vent not only my feelings of anger and frustration but also my cry for help. In those moments I truly was “out of order.” My body was exhausted and my spirit broken.  I didn’t go back to bed and you won’t either. You can’t. There is too much to do. But, you can vent and you should.  If not here, then in private. Look in the mirror and stand like this little duck and let it out. Cry and scream if you have to. And, if you do, drop me a note in the comment section and let me know how it goes. It may just make your day.  I’m smiling just thinking about it and I hope you are too.

Dr. Phil, caregivers need your help. Please accept the Dr. Phil Challenge and use your resources and the Dr. Phil Foundation to help caregivers most in need. I’ll happily help in any way you see fit.  You may contact me directly at bcarducci@comcast.net

Caregivers, 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

Holding Tight When They Are At Their Worst

when at your worst

Caregivers, you are home to the ones in your care. The place where they are loved regardless of their behavior.  For most of them you are the only one keeping them safe from themselves. You are the gatekeeper fighting valiantly against the bitter, ugly diseases that attack them every day.

Being a warrior against a foe so powerful is brutal in its demands. You probably didn’t know how hard it would be when you took in the role. Now it’s draining you. Keeping you awake at night. Taking a toll on your health because you can’t leave the house to see your own doctor. Yet you continue for it is your arms holding them tight. You are their home.

Blessed be.

I invite you to share some of the worst things you have to cope with as a caregiver. Perhaps your story will help someone else get through the day. If you prefer to be anonymous you may contact me directly via email bcarducci@comcast.net  and I will post your comment for you.

It may even help to get Dr. Phil’s attention and get him to respond to the Dr. Phil Challenge to use his resources and the Dr. Phil Foundation to provide grant money to assist caregivers most in need of help.

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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