Why You?

Often one person in a family becomes the caregiver and the others go on with their lives as before, offering little or no help.

Why did you decide to be the one who gives so much?

In my case people were surprised to discover that I was a caregiver for my father-in-law. “You mean he’s not your father?” they would say. Surprise evident in their tone.

They were even more amazed when told he was my husband’s stepfather and not a blood relative to either of us.

“Why would you do this? You must be a saint.”

I am no saint. I am simply a woman who saw a family member in need and did my best to help. I didn’t know how hard it would be or how long it would last. How could I have known? But even if I had I would not have changed a thing.

Some day I will need help and I hope someone will be there for me.

Families are not created only through DNA. We marry, we bear children, we divorce and remain connected. Families feud over things big and small and still  remain connected.  We create unique families through adoption, friendship, and commitments of all kinds.

Through this blog I reach out  to offer support and understanding. To let you know you are not alone, that you are part of a vast family of caregivers.

Why did you decide to join this tribe?

 

 

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What Adult Children Need to Know About Alzheimer’s/Dementia

Prepare to Care -What Adult Children Need to Know About Alzheimer’s/Dementia Before and After It Strikes Home

What a great group I had for the debut presentation on October 8th. Right from the start these caring young adults indicated how interested they are in learning more about these dreadful diseases and how to prepare for what may be coming to their families.  The questions and comments kept coming throughout the presentation.

When I became a caregiver I knew it would be hard. But, I had no idea of how difficult it would become, how long I would be doing it, or how much it would change me.  Because of those seven years I have become a caregiver advocate. For those who are caregivers now, I facilitate a caregiver support group and I write this blog. I wrote a book about my experience caring for my father-in-law, a book that has been called brutally honest and portrays me as flawed as I truly am. I wrote it to show people what it’s really like to be a caregiver.   As meaningful as these things are to me, I want to do more to make life better for caregivers and those in their care.

 It is now part of my mission to help adult children Prepare to Care. Although we touched on some very frightening and emotional possibilities you can see from the photo below that the result was a positive one as each participant left more informed and better prepared to face the tough decisions they will be called upon to make in the future.

prepare-to-care-2

The Imperfect Caregiver is second from the left in the second row. Her daughter, who is now learning all she can to Prepare to Care, is second from the right in the second row.

While many families now provide home care for relatives and loved ones, the number is expected to significantly increase in the coming years with the aging of the Baby Boomers. According to the Family Caregiver Alliance:

  • Approximately 43.5 million caregivers have provided unpaid care to an adult or child in the last 12 months (National Alliance for Caregiving and the AARP)
  • About 15.7 million adult family caregivers care for someone who has Alzheimer’s disease or other dementia. [Alzheimer’s Association. (2015). 2015 Alzheimer’s Disease Facts and Figures.]

Employers  and civic group leaders interested in arranging a presentation to their employees can reach Bobbi Carducci at bcarducci@comcast.net.

 

Mesothelioma Caregiver: You Are Bold, Strong, And Not Alone

Welcome Guest Blogger, Nicole Godfrey, writer and community outreach associate for Mesothelioma Guide.

In the words of Brett H. Lewis, “Health is by chance – Caregiving is by choice.” Caregiving is a huge responsibility, but you must remember that you are only human. You must also remember that the person that you’re caring for is still the same person. Don’t let a diagnosis change your point of view about them.

Mesothelioma Guide is dedicated to helping mesothelioma patients thrive, which includes providing information and support to their caregivers.

What to Expect

There are several factors to take into consideration when it comes to assuming the role of caregiver. As a caregiver to a mesothelioma patient, your role is going to change as the patient’s disease develops. The patient’s state of health may improve or it may decline.

Here are a few responsibilities you may have

  •  Feeding, dressing, bathing
  • Managing medication
  •   Providing transportation

Your duties as a caregiver are to assist in the day-to-day activities of the patient. You will not only monitor their health and provide them companionship, but you will find yourself being a part of a big decision making process. You will help them make decisions about their treatments, their financial and legal issues, their insurance, and their end-of-life treatment.

Don’t Forget About Yourself

As a caregiver you are going to find yourself being a huge part of someone else’s life, but you must remember that you are an important factor to making your role successful.

It is completely ok to take a timeout and to assess the new responsibilities that you are having to adapt to.

Here are a few tips to any caregiver

  • Rest
  • Take care of yourself physically
  • Accept help from others
  • Seek the aid of respite help

Read Mesothelioma Guide’s blog for more information on how to take care of yourself as a mesothelioma caretaker.

Talk About It

You are going to find yourself being a whirlwind of emotions. You are going to be scared. You are going to be angry. And that is ok. However, don’t bottle up your emotions. Talking about the circumstances can be your best dose of medicine.

You can always talk directly to the person who you are caring for. By doing this, you can address any questions you may have. Also, this allows you and the patient to express how you are both feeling. However, if the person you are caring for doesn’t want to talk, or you find it difficult to talk to them, you can always explore the option of support groups.

Support groups aren’t just for the patient. Some of these groups are designed specifically to help caregivers. Support groups help a person to stay both positive and hopeful. A person can attend a support group meeting in person, by a phone conference, or online.

It has also been proven that support groups can

  • Reduce stress
  • Provide inspiration
  • Offer comfort

You must remember that you are not alone. Support groups are designed to create a community where people can talk about their disease or it gives caregivers a chance to express their concerns about caring for someone with a disease.

Sources:

Quote: https://www.goodreads.com/author/quotes/6546527.Brett_H_Lewis

https://www.mesotheliomaguide.com/community/caregivers/

https://www.mesotheliomaguide.com/community/the-nurses-corner-9-ways-mesothelioma-caregivers-can-care-for-themselves-too/

https://www.mesotheliomaguide.com/community/support/

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.

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

 

 

 

 

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

 

 

Despite All My Good Intentions, I’d Let Him Down.

 

where have I gone wrong

The first time I met him, when Mike and I first started seeing one another, he reminded me so much of someone dear to me that I felt as if I’d already known him for a long time.

Mike was living with his parents then, renting a large room on the third floor of the row house he’d grown up in, while looking for an apartment closer to work. We’d spent the afternoon together, and then he’d taken me to his room to show me his drum set and to play a few songs before I had to go home to my kids. Recently divorced and not used to dating, I was shy and unsure of myself. I wasn’t comfortable being there at all and was relieved when he played the last note and offered to walk me to my car.

Descending the stairs, I noticed just the toes of a man’s shoes, cheap, black, and rubber-soled. Then white socks, sagging around his ankles, came into view. His pants were navy blue. Since he was still seated, I couldn’t confirm that their seat was almost worn through, but I knew instinctively that would be the case. It’s just the same with the brown pair he wears when the blue ones are in the wash, I thought.

I watched him dig his heels into the footrest of his chair, easing the back upright so he could stand and offer a hand in greeting. A too-large brown belt circled his waist, welts of strain scarring the surface at various places, marking recent fluctuations in his weight. His shirt was a whisper-thin old thing, tucked inexpertly into the baggy pants he pulled up to a height only very old men find comfortable.

I felt a smile of recognition cross my face when his features came into view. Everything about him reminded me of my Uncle Louie. The fact that Louie was not just my uncle but my great-uncle, my personal godfather, and the only Italian in my big Irish family made him appear to be a man of epic proportions. He was shorter, darker, fatter, and far more interesting than any of the skinny, red-headed, freckle-faced men who chased after us when my brothers, sister, and cousins and I couldn’t contain our wild selves a minute longer and tried to uphold the age-old Celtic tradition of fighting like a bunch of hooligans.

Whenever I’d stay with my godparents for a weekend, Uncle Louie would let me sit on his lap while he drank a beer or a highball. He even let me have a sip now and then. I didn’t like the taste of either one but I never told him so. I had an idea in my head that sipping whiskey just naturally went along with watching the Friday night fights, and I wasn’t about to risk losing that privilege for anything.

While Uncle Louie’s gaze remained glued to the tiny black-and-white TV screen, I’d watch the crinkly lines around his eyes deepen each time he’d take a drag off his Camel cigarette and wonder how he got those puffy little bags to grow beneath his lower lashes like that.

My God, I thought as Mike began the introductions, even his chair looks the same.

“Dad, I’d like you to meet Bobbi.”

Shaking off the memory of one person in order to acknowledge the presence of another, I greeted the man who would become my father-in-law, convinced I’d seen something familiar in him. They have the same light in their eyes, I thought with affection.

Sitting in a hospital parking lot so many years later, I was just beginning to discover how very wrong I’d been.

Had he been pretending all these years? Is the real Rodger the one who announced to the nursing staff that I’m useless and no damned good? Does the medicine he takes every day allow him to be himself, or does it mask his true nature? Who is this man who lives in my house and paces the halls late at night?

As hard as I tried to block out the thoughts, I couldn’t stop the images from coming. Flashes of movie maniacs appeared, unbidden. Norman Bates from Psycho leered through a curtain of memory only to be replaced by rapid-fire clips of Jack Torrance careening through the halls of the Overlook Hotel in The Shining.

“Stop being ridiculous,” I said, shaking off the mood I’d created and starting the car.

As I turned onto the highway I told myself that my thoughts and the fact that I was now talking to myself in an otherwise empty car were more an indication of my mental state than his.

I knew from my research that schizophrenics aren’t the knife-wielding lunatics often portrayed in movies. Most of them are timid, introverted people who want to be left alone. Unfortunately, very often when they get their wish they end up homeless, in the hospital, or in jail. And sometimes, even when they aren’t left alone, those things happen.

Where did I go wrong? What did I miss and how can I make sure this doesn’t happen again? Those questions and more went unanswered as I covered the miles between the hospital and home, my mind and body too tired to cope with the guilt I felt at that moment. Despite all my good intentions, I’d let him down.

This post  above is an excerpt from Confessions of an Imperfect Caregiver ©.  Knowing I am truly imperfect inspired me to become a caregiver advocate and to create this blog.

Dr. Phil, Caregivers need help. Please accept the challenge and use your resources and the Dr. Phil Foundation to create a grant to provided real help for 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

Help me get help for caregivers. Join the Dr. Phil Challenge. Post you comments here:

 

Trust Yourself

When caring takes courage

Trust Yourself

How could I do that when no matter what I did he continued to worsen?

Things accomplished one day were no longer possible the next. Memories came and went within moments. Laughter turned to tears and acceptance to anger so quickly it was impossible to know why.

Who am I describing in that passage? Him or me?

It could be either.  In truth, it’s both.

I came to finally trust myself because I finally realized I was the best person to do this, flawed as I was.  I made it up as I went along and so do you. That’s how this is done when you are juggling the love and the loss. “All at once, all the time.”

 

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Where Have My Friends Gone?

friend therapy

Being a caregiver for a loved one is lonely. From morning til night, and often well beyond, caregivers are on call even when our loved ones demand we leave them alone. We become the bad guys. The woman or man who insists they bathe when they don’t want to and serve them food when they have no wish to eat. Our parents or our spouses resent being treated like children. Their losses are devastating and they resent being reminded of them. Days go by when they don’t say a word. Some can’t. Others were told long ago not to speak to strangers and that is who we have become.

Knowing we are busy and often unable to leave the house our friends drift away. Not intentionally. It simply happens. They visit a few times only to find us distracted and harried, on constant alert for a call from our loved one or the sound of that horrible thump that signals another fall.  Sometimes we cry and then refuse to follow well intentioned advice to take time for ourselves and get enough rest. We aren’t as much fun as we used to be. I get it.  But still we need you. If only for a few minutes now and then we need you to come by and share a cup of coffee with us. We need a bit of adult conversation. Having a friend say, “Tell me about it,” and then sit back and listen as we speak is a moment of respite we cherish.

Please, even if you only have a few moments, be a friend to a caregiver today. Someone is waiting.


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NaBloPoMo November 2014

 

 

Moment of Respite – A Dog Comes to Visit

Dog give me strengthI didn’t know how he would react but I was ready to try anything to brighten his day and relieve some of the stress we were both feeling. His daily walks were a thing of the past. His diet was severely restricted and either he wasn’t sleeping well or he was sleeping all the time. Mike and I discussed it and decided to contact some people we knew who trained therapy dogs and request a home a visit. We had heard stories of how people in nursing homes and hospitals would smile and begin to share stories about pets they had when the friendly animals came to visit. Nurses and staff members reported that patients were happier and more alert for hours, and in some cases days, after they dogs left. We felt it was worth a try.

I wish I had a picture of that visit. I had let Rodger know he was going to have two visitors, one of them a dog. He was skeptical at first.

“What am I gonna do with a dog? I can’t walk no more. Who will clean up after it?”

“The dog isn’t going to live here. He’s coming for a short visit.”

“Why?”

“For something different. To help pass the time.”

“Do what you want. I hope it doesn’t pee on the floor.”

Rodger rarely smiled but when a beautiful golden retriever slowly entered the room and sat at his feet he couldn’t help himself.

After introducing herself and her dog, who was wearing a vest identifying him as a therapy dog, the volunteer sat quietly and allowed Rodger and Casey to get acquainted.

Shortly after the smile appeared Rodger slowly leaned over and tentatively began to pet Casey.

“Did you have a dog as a pet when you were a boy?” the volunteer asked.

“No. No pets. In the old country dogs are for working. Not like here where pets are spoiled.”

And then he began to talk. He spoke about life on the farm. For a while he went back to a time and place where he was able to walk outside in the sun and work up an appetite for homemade pasta and oven fresh bread. He sat up straighter and the light so rarely seen in his eyes made an appearance. I could feel my neck muscles relax as I watched the transformation. He may not have had a pet growing up, and to him dogs were meant to work, but what he didn’t seem to notice was that this one was working too. Casey was working a little bit of magic for both of us and for that I was grateful.

For more information on the positive impact dogs can have on loved ones with dementia go to:

http://www.alzheimersproject.org/About-Us/News-Photos-and-Calendar/Latest-News/Pets-and-Dementia

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NaBloPoMo November 2014

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