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

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

 

 

Please Be Kind

Encouragers wanted

Be kind to everyone may be too tall an order even for the most saintly among us. So, I am not going to ask that of you. I do ask that you be kind to the caregivers. The women, men, teens, young adults, paid caregivers, family caregivers, friend caregivers, etc. Be kind to them all.  Try as they may, caregivers never win. The ending of their story is inevitable. The pain is overwhelming.

Many will ask, “What can I do to help.”  The answers to that are too numerous to list so here are a few suggestions.

Stop in for a visit. Prepare a hot meal or have one delivered once a month.  Sit and talk with the person needing care so the caregiver can take a nap. Go to the grocery store.  Give the caregiver a day off to rest. Think, “What would I need most in his or her situation?” and do what you want people to do for you.

Be kind to caregivers. Become and encourager. Behavior is communication. What is your behavior saying to the caregiver in your family?

Oh, and help me get Dr. Phil’s attention. Encourage him to accept the Dr. Phil Challenge to use his resources and the Dr. Phil Foundation to establish grants to help caregivers most in need of respite. You can send him a message via the following social media links.

http://drphilfoundation.org/  http://www.drphil.com/ @DrPhil

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

 

 

 

How Do I Get Him To Eat?

why train in my mouth

This picture made me laugh. I remember playing that game with my little ones when they were reluctant to eat.  Food was strange. Textures felt weird in their mouth. Green stuff tasted okay but the orange glop? Disgusting.  Sweet stuff? Now we’re talking.

Sound familiar caregivers?

I remember Rodger telling his doctor that he loved vegetables. It was true. He was a farm boy used to eating them fresh from the field.  When he developed severe swallowing problems and his diet was limited to pureed foods and thickened liquids I made a lot of thick vegetable soups and stews, doing all I could to make sure they were full of nutrition and tasted good.  So, when the doctor asked which vegetable was his favorite I was surprised to hear him say, “Pudding, the white kind.”

For several days he’d been eating smaller and smaller portions of the purees, pushing my hand away when I tried to get him to eat more. I was at a loss as to what to do.

“Pudding, the white kind.” I thought.

If pudding was what he liked, pudding he would get. It was thick enough he could swallow it. It didn’t melt into a liquid like ice cream would, putting him at risk of aspirating and it was made with milk. There was nutrition in there and he liked it.  We both were happier when I helped him eat a few bites of the pureed food and as much of the pudding as he wanted.

There comes a time when we have to let go of what was and embrace what is.  Foods they once loved no longer taste good and when that happens many of them want only sweet things. Ask the person in your care what his or her favorite food is. You might be surprised and inspired by the answer.

The Dr .Phil Challenge Continues

Dr. Phil, I challenge you to use your huge resources and the Dr. Phil Foundation to develop a program of grants to help caregivers follow your advice to accept help, rest, take care of themselves so they can continue to care for those they love so much that they are willing to sacrifice their health to for them.

 Blog readers: Here is the link to the Dr. Phil episode referenced in this post.  The segment on caregiving starts at around the 34 minute mark. https://www.youtube.com/watch?v=lXR1PddbrfQ

If you support my challenge to Dr. Phil to do more than offer advice to caregivers please let him know via Facebook and/or Twitter and any other social media sites you use and by sharing this post with everyone you know and asking them to do the same.

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

 

 

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:

 

The Face of a Caregiver

I usually avoid cameras. I prefer the illusion that I look better than whatever shows up after the click or whirr that indicates my image has been recorded digitally or on film. Today I am shedding my vanity to show you what the face of a caregiver came to look like.

caregiving pic Bobbi

Bobbi in 2005 – three years as a caregiver. Four more to go.

When my father-in-law came to live with us I had a full time job. I went to the gym every day. I slept well and I ate right. All the things a caregiver is advised to do. Little by little it all fell away.

First the job went. My boss was understanding. I was even offered the chance to work from home most of the time and go into the office only as needed. We tried it for a while. It didn’t work. I was failing there and at home unable to give either the attention they needed.

Next to go was working out at the gym.  A half hour drive there and back plus an hour workout was too much time away. It wasn’t safe long before he needed constant supervision. He’d forget things on the stove and, for some reason, he liked to dry wet tissues on the light bulb of the lamp in his room. The risk of a fire scared me so much I bought a baby monitor to keep an eye on him.

Eating right was next to go. My diet became much like that of an exhausted mother of a newborn or a temperamental toddler. Feed him and grab what you can. The remains of sandwich here, a few chips there. Every now and then a yogurt cup to convince myself nutrition hadn’t fallen by the wayside entirely.

Getting enough rest became a hope for the future. A future I didn’t dare admit I thought about for it meant he would be gone and to wish for this dreadful disease to be over was wrong, wasn’t it?

For seven years I did the best I could. He did the same. It took a huge toll on me. It took his life away. I miss him. I would do it again if needed.

It’s important that people understand how hard it is. Perhaps by sharing what the face of a caregiver becomes someone, maybe even Dr. Phil, will get it. Caregivers need help. Caregivers need you.

Bobbi now

Bobbi on July 26, 2014 as we honored him on his birthday and shared his story with the public for the first time.   I look years younger and feel it as well. I hope he was smiling along with me.

More voices urging Dr. Phil to help caregivers.

Diane Waterman – Comment: I didn’t see Doctor Phil’s show, but I can tell you from experience, being a caretaker to someone sick or elderly could never pay enough for what these people do. I cared for my sister with help from my children, for the last months of her life. She had Lung Cancer! I have Fibromyalgia myself and was dealing with daily pain. I did everything I could to take care of myself, if it wasn’t for my own adult children, I would not have survived. They gave me breaks night time. The whole year was cruel in many ways, I had to deal with a very dysfunctional family as well! I was relieved when she finally passed on July 10th 2013, not only for her , but for myself!!  RIP Mona, I love you and miss you! Xoxo

Pamela Lynne Kemp  – Comment: Thank you to everyone for sharing your story.  You speak for so many of us.

Beth Anderson – Comment: I am full-time caregiver for my Mom who turns 85 in a couple of weeks. My mom has Alzheimer’s and Dementia as well as numerous other ailments. I have been Mom’s full-time caregiver since 2006 and after a recent fall, I am with Mom 24/7. I split my time at her home and bring her home with me for what she calls ” a mini vacation.” I am not a saint or looking for recognition, I just realize that it take a special person to take on the role of caregiver. I make most of her meals, take her to all of her appointments, set up her medications, bathe her, clean her after messy bathroom visits, take her for walks, take her to the nature center, the pumpkin patch, graduation parties, weddings and if my husband and I take a vacation, Mom goes along. I get occasional breaks, thanks to two of my sisters, but their work schedules are a usually a conflict. My husband has been so supportive through this chapter in Mom’s life as difficult and exhausting it may be. People do not know my story, as I do not know other people’s stories. With that being said, be kind to everyone. Offer assistance whenever you can. Smile, even though you don’t feel you have much to smile about, it could make all the difference in the world. Stay positive! Thank you to all caregivers, I am walking in your shoes! Love you Mom!

Sherri D – Comment: I’ve been caring for my severely disabled son for almost 15 years, with many more to go. Some say it’s my duty as his mother and they may be right, but it’s BC I LOVE HIM I have up my life for him. I’m coming out of a second marriage 😦  I don’t go anywhere with friends or much else. I used to be a dance teacher and dancing was my life. Now I’m a stay at home mom… Lonely and tired. With no relief in sight.

Linnea Hedborn – Comment: I am primary caregiver to my 95 year old mother. Every single day is a battle to be heard by her doctors and my family. I can’t let down for one second…not one. I have to keep so many different balls spinning in the air, no matter what my own financial situation (dire) or mental and physical health is. The latter is going fast. To be told to “take care of myself” is patronizing and unhelpful.

Stacey Belt – Comment: I have quit jobs to care for three family members who have now died.  I now need help and find myself unemployed, homeless and about to fight melanoma for the second time.  Guess what? I have no one to care for me, no one, zip, zilch, zero!  I gave up everything three times to care for family and now the best thing that can happen is I die quickly since I am homeless, jobless, penniless and have no support!! That’s the thanks I get! But hey, God has a special place in heaven for me or so I’m told! What a great thing to look forward to right?!

To contact Dr. Phil directly and ask him to accept my challenge to offer real help to caregivers go to the following links.

http://drphilfoundation.org/

http://www.drphil.com/

@DrPhil

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

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