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.

 

Four of the Saddest Words Ever Spoken

She doesn’t remember me.

I hope my children never have a reason to say them. But it could happen. If it does I hope they understand that even in my confused mind they are still a part of me.

By the time I reach that point I will have lost much already.

My short term memory.

My rich vocabulary.

My love of long, hot showers.

My ability to cook.

My driver’s license or even how to find my way home if I did still have that privilege.

 

I pray I’ll still have the ability to read and understand the words my favorite authors have so painstakingly crafted. A world without books would be barren indeed for someone who loves to read as much as I do.

Alzheimer’s or some other form of dementia will have taken me somewhere back in time.

Perhaps I am reliving my days as a busy young mother and you, my darling daughter or son, are still in elementary school. You have not yet grown into the wonderful adult you will become.  I see you pink cheeked and out of breath after running up the steps, opening the screen door, and calling out, “Mom, I’m home. Guess what I got on my spelling test today!”

It may not seem like it in the moment but the memory of you is deeply implanted in my heart. The heart that beat so close to yours during the time I carried you. The heart that cried with you when you were hurt and rejoiced with you when you achieved a goal.

If the day comes when I look at you and ask, “Who are you?” I hope you will smile, give me your name, and tell me about your mother.

I love you. I pray you never forget that.

Dr. Phil: Please help support caregivers via the Dr. Phil Foundation. Caregivers are in desperate need of respite and you can help make it happen.

Caregiver Support Coming to Purcellville, VA

I’ve been away from the blog far longer than I planned. However, being a caregiver and all that entails is never far from my heart and mind.  One of the most important and meaningful things I’ve been doing while away from the keyboard is training to be a Caregiver Support Group Facilitator through Alz.org.

Here are the details of where and when this group will meet.

Caregiver Support Group, Purcellville, VA, 20132

When: Thu, April 28, 3pm – 4pm
Where: The Carver Center, 200 Willie Palmer Drive, Purcellville, VA, 20132 (map)
Description: Alzheimer’s Association Support Groups Alzheimer’s Association support groups provide a place for people with Alzheimer’s, their caregivers, family members, and/or friends to share valuable information, caregiving tips and concerns throughout the Alzheimer’s journey. Groups are facilitated by trained leaders and are ongoing, free and open to the community. Please call our 24/7 Helpline (800-272-3900) or contact the facilitator directly for more information and to confirm date and time. The Carver Center | 200 Willie Palmer Drive, Purcellville, VA, 20132 | Bobbi Carducci, bcarducci@comcast.net

For information on where to fond a support group near you go to: http://www.alz.org/nca/in_my_community_support.asp

If you are a support group facilitator I’d like to hear from you. Perhaps you’d be willing to share resources or tips on what your group finds useful. If you attend a support group I’d love to hear about how your group has helped you.

Caregivers Are Strong Enough

strength Caregivers are among the strongest people you will ever know.   Caregivers Are Heroes. Help me raise awareness of how many caregivers there are and how fast their numbers are growing. Request your FREE Caregivers Are Heroes Wristband and wear it with pride.  All you have to do is send your name and complete mailing address to bcarducci@comcast.net. (Available in the U.S. only) No shipping costs or hidden fees apply.

Caregiver Bracelet

The Imperfection

Today I welcome guest blogger Peter Biro. Peter is a caregiver. On his blog, The Sandwiched Man  he writes about caring for his father and his children at the same time. Welcome Peter.

The Imperfection

When Bobbi Carducci of The Imperfect Caregiver asked me to contribute a post to her blog (where this entry also appears), I settled early on a topic that has been much on my mind recently. Then, suspecting it might send some readers running for the exits, I decided to check my instinct by asking my Facebook friends about particularly unappealing cocktail party discussion topics. Their list included pap smears, what sub-department of finance someone works in, minutiae-filled marathon training and post-run recovery rituals, CrossFit (described as the Amway coffee chat of the 21st century – by the way, Amway was on there too), someone’s latest airline travel delay nightmare, detailed hole-by-hole recounting of a round of golf, and fibromyalgia.

Included on this list, indirectly, was incontinence. Unfortunately, this is actually what I am writing about. But hang in there with me anyway.

My father is about as physically bulletproof as a 91 year-old can be. He is independent, sharp, strong, and mostly mobile. However, what he is not is able to do is control his bladder. It controls him. Back in 2002 when he weighed 50 pounds more than he does now, he had congestive heart failure, for which he was prescribed Lasix. If you don’t know what Furosemide (that’s the generic name) does, it’s a so-called loop diuretic, meaning it tricks your body into squeezing more water out of you. Kimberly-Clark, the company that makes the adult diapers Depends, should send their manufacturer royalty checks. Then he’s on Flomax (aka Tamsulosin), which relaxes enlarged prostates. In other words, it also eases the flow of urine.

Maybe Depends should be sending royalty checks to these guys as well.

Compounding the problem is that he is now only mostly mobile. So, reaching the bathroom when the urge strikes sometimes just takes too long. Who among us has not reached the bathroom with mere seconds to spare? He loses those seconds to slow movement. When you live in a community like he does, this causes complaints from other residents, which is a big headache.

His physically slowing down also affects the often-recommended solution of using Depends: he physically has trouble putting them on and taking them off. That assumes my brother and I could convince him to wear them, which we can’t. And honestly, I almost don’t want to succeed.

I’m oversharing about my father’s incontinence because I have to deal with it and at times, it dominates my discussions with him. With time to reflect, I realize how insane this is. He is a whole human being, a man in full, and this is an imperfection. This is a man who remembers stories about family members, friends and me, a history that will die when he does, and this is what I’m spending our time together talking about? How much to cut back his Lasix by? Whether or not to try out Oxytrol (a female hyperactive bladder medication) as a solution?

As caregivers, however, we frequently focus on the imperfections. They are the urgent we tend to rather than the important. It’s a peculiar byproduct of being in a caregiving position. Put another way: I have a good friend my age who has related issues, and I promise you, we have never discussed Oxytrol.

We also tend to obsess on the imperfections in how we provide care, whatever form that takes. As a Sandwich Generation father, I find often myself evaluating and second-guessing how I provide for, communicate with, and otherwise help raise my children. I even write an entire blog about it.

In the end, however, what matters is not the imperfections but the thing in full.

As I mentioned, I want to thank Bobbi for the chance to guest-write on her blog, the title of which I have a new appreciation for. Sometimes writing about imperfections in others and in ourselves, helps put them in the right perspective. I know it has for me.

http://sandwichedman.com/

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

 

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

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

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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