18 May 2015
by Bobbi Carducci
in care giving, Dementia, family issues, home health care, mental illness, nursing, sandwich generation, schizophrenia, Uncategorized, women's issues
Tags: Alzheimer's disease, Bobbi Carducci, Confessions of an Imperfect Caregiver, Dysphagia, family stories, health, help for caregivers, Home Health, Lewy Body Dementia, nursing, Open Books Press, paranoid schizophrenia, Parkinson's Disease, precious moments, respite care, sandwich generation, schizophrenia, Senior Health, therapy dogs
I 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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05 May 2015
by Bobbi Carducci
in care giving, caregiver, Caregiving, Dementia, family issues, home health care, Lewy Body Dementia, mental illness, nursing, sandwich generation, schizophrenia, Uncategorized, understanding dementia, women's issues
Tags: Alzheimer's disease, Bobbi Carducci, Caregiver Support, home care, Home Health, Lewy Body Dementia, nursing, Open Books Press, paranoid schizophrenia, Parkinson's Disease, power of prayer, precious moments, respite care, sandwich generation, schizophrenia, Senior Health, sundowning
An Army of One
Look around. Whom do you see? Women, men, teens, grandparents, spouses, sisters, brothers, friends, significant others. Nurses, home-health aides, doctors, Visiting Angels, hospice care workers, social workers. Priests, nuns, ministers of every denomination. People of all races and ethnic origins. All across the world, in every country, we are there. We are the caregivers.
Yet we are alone. Every story is different. Every caregiver fails in his or her own way. The guilt eats at us. The lack of sleep drains us. The accusations of neglect and abuse by loved ones suffering from dementia or brain injury haunt us day and night. We feed and clothe and them. We bathe them. We cry for them and with them. We love them. And some days we don’t like them. We go to battle for them and we beg for some time away. We are part of you and we are alone.
My husband and I planned for the time when one or more of our parents would need care. We would bring them into our home and provide a safe, loving place for them as longs as it was needed. It would be hard but hard is what life is sometimes.
Living with and caring for my father-in-law, Rodger, was far more difficult than I ever imagined. I never suspected his quirky behavior was due to schizophrenia first diagnosed in his early twenties. A diagnosis long hidden from members of the family, including my husband and me. Not only had the disease affected his life but so had the years of powerful drugs that enabled him to function. His memory and ability to reason were vastly diminished. Suspicion and paranoia made it impossible for him to trust me while I, innocent that I was, trusted him when he said he took his medication.
Although he lived for five years after his last psychotic break he never really recovered from it and the near fatal bout of pneumonia that he came down with while in the hospital. After that came the heart attack, followed by surgery to implant a pacemaker. The pacemaker led to blood clots forming in his arm. Blood thinners requiring regular blood tests caused him great anxiety.
“What is the government doing with my blood? Why do they need so much?”
My suspicion that he was developing Parkinson’s disease was deemed incorrect until months later it could no longer be denied. It ran in his family and his sister had recently died from it. He needed a walker and could no longer use the stairs. Severe swallowing problems meant pureed food and thickened liquids made up his diet. I learned to cook food that tasted good and offered as much nutrition as possible but even I had to admit it looked awful. Dementia came next bringing the phenomenon of sundowning along with it. No one slept much once that started.
When people learned I was a caregiver they would say they understood. Some may have, on some level. But, I knew deep in my heart that they could not really know how it was. How could they? His life was his own. His back story defined who he became. His history of illnesses was as convoluted and complicated as his mind. He needed so much. What he got was one woman, part of a vast army of caregivers who tend their loved ones alone.
Some Caregiver Statistics from The Family Caregiving Alliance
Who are the Informal Caregivers?
Although there may appear to be wide discrepancies in estimates of the number of informal caregivers in the U.S., the figures cited below reflect variations in the definitions and criteria used in each study, e.g., age of care recipients surveyed or relationship of caregiver to care recipient.
Magnitude
- 65.7 million caregivers make up 29% of the U.S. adult population providing care to someone who is ill, disabled or aged. [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC.] – Updated: November 2012
- 52 million caregivers provide care to adults (aged 18+) with a disability or illness. [Coughlin, J., (2010). Estimating the Impact of Caregiving and Employment on Well-Being: Outcomes & Insights in Health Management, Vol. 2; Issue 1] – Updated: November 2012
- 43.5 million of adult family caregivers care for someone 50+ years of age and 14.9 million care for someone who has Alzheimer’s disease or other dementia. [Alzheimer’s Association, 2011 Alzheimer’s Disease Facts and Figures, Alzheimer‘s and Dementia , Vol.7, Issue 2.] – Updated: November 2012
- LGBT respondents are slightly more likely to have provided care to an adult friend or relative in the past six months: 21% vs. 17%. [MetLife: Still Out, Still Aging 2010. Study of Lesbian, Gay, Bisexual, and Transgender Baby Boomers] – Updated: November 2012
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19 Apr 2015
by Bobbi Carducci
in care giving, Dementia, family issues, home health care, mental illness, nursing, sandwich generation, schizophrenia, Uncategorized, women's issues
Tags: Alzheimer's disease, Bobbi Carducci, Book for caregivers, Confessions of an Imperfect Caregiver, Dysphagia, elder care, family stories, God, health, help for caregivers, home care, Lewy Body Dementia, National Family Caregivers Month, nursing, Open Books Press, paranoid schizophrenia, Parkinson's Disease, prayer, precious moments, respite care, sandwich generation, Senior Health, sundowning
There were days when I felt more like the mean girl than the patient saint some believe caregivers to be. I didn’t want to do it any more. I got mad. I hollered back when he shouted at me. I regretted it the moment it happened but let’s be honest, this is what caregiving is like some days.
I have to admit I never looked that good when going through it. I more closely resembled the image below, right down to the scraggly plumage. But, I couldn’t resist posting this image. I love her attitude.
It is critical that we address the realities of caregiving and not sugar coat it.We have to do everything we can to support the over 65,000,000 caregivers in this country and the millions more who will become caregivers very soon.
November is National Caregivers Month. The President has issued a proclamation in support of caregivers. Caregiver conferences are being held across the country. It’s time to talk less and provide more help. Our legislators would do well to read caregiver support sites and hear from the caregivers themselves. Feel free to start by sending them a link to my blog.
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04 Feb 2015
by Bobbi Carducci
in care giving, caregiver anger, Dementia, family issues, home health care, mental illness, nursing, schizophrenia, Uncategorized
Tags: Alzheimer's disease, Bobbi Carducci, Book for caregivers, caregiver advice, Caregiver Support, Confessions of an Imperfect Caregiver, Dysphagia, elder care, Family, family stories, family story, harm onself, insanity, Lewy Body Dementia, nursing, Senior Health, sundowning
We thought we knew what to expect. Having an elderly parent living with us would change our life, we knew that. We also knew that Rodger was quirky and had a number of health issues.
“It will be hard but we can do it.” Mike and I agreed. “He will improve in our care.” Boy oh boy were we mistaken.
As his primary caregiver I soon learned that I had a lot to learn and I had better learn it fast. I needed to understand his medications and their possible side effects and interactions. I had to recognize that often he reacted exactly opposite of the norm. If a medication came with a warning that it caused drowsiness he would be up all night. Add a medication to lower his blood pressure and it would soar. It was weird and frightening.
I had to learn that he was often secretive and hid his symptoms when ill or in pain. Over time his illnesses increased in number and severity. What the heck is sundowning and why was he so aggressive in the evening? What happens when mental illness and dementia combine? Would he harm himself? How could I convince the doctor he had Parkinson’s disease when he stopped shaking and sat up straight and told the man I worry too much and not to pay attention to me?
I had to learn how to convince medical personnel to listen to me, not him, when answering questions about his behavior or the newest setback in his ability to remember or reason. He forgot or he lied, it didn’t matter which. The fact is he tried hard to fool them and often succeeded.
“She’s crazy,” he would tell them. Often it was close to the truth.
I didn’t try the same thing over and over expecting a different result as we know is sign of insanity. I became as creative as I could be when problem solving. I was ever vigilant in watching for unexpected symptoms. Still,many times I was close to losing my mind in frustration. When no matter what I did and no matter how hard I tried he kept getting worse I had to learn I could not stop this process. I had to learn that by giving him more good days then he would have had otherwise was the best I could do and that was enough. That’s a test I could not have studied for. I had to live it. I had to learn that he was unique and while many aspects of caregivning are the same, every person is different.
Caregiving is a test we can’t study for. It’s by sharing our stories and our unique ways of problem solving that we learn and I am grateful for each and every one of you who shares a bit of your journey with the rest of us. I’d love to hear from you.
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20 Nov 2014
by Bobbi Carducci
in care giving, Dementia, family issues, home health care, mental illness, nursing, sandwich generation, schizophrenia, Uncategorized
Tags: Alzheimer's disease, Bobbi Carducci, Buffalo New York, caregiver stress, Confessions of an Imperfect Caregiver, dementia, elder care, family stories, help for caregivers, home care, Home Health, Lewy Body Dementia, meltdown, nursing, Open Books Press, paranoid schizophrenia, Parkinson's Disease, precious moments, respite care, sandwich generation, schizophrenia, Senior Health, Snowed in, sundowning
For caregivers in Buffalo, New York and the surrounding area here is a reminder that meltdowns are not only okay, sometimes they are exactly what is needed in order to carry on.
Any change in routine can wreak havoc for our loved ones. I can only imagine what seeing snow piling up for hours on end and having it cover windows and doors, creating a feeling of being trapped. is having on loved ones with Alzheimer’s disease and dementia. I pray that you have all the medications and all the supplies for everyday living that you need, that there will be no medical emergencies that require you to leave your homes, and that your loved ones remain as calm as possible.
And one more thing; if things become too stressful let it out. As singer, Leslie Gore, once said,
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08 Nov 2014
by Bobbi Carducci
in care giving, Dementia, family issues, mental illness, nursing, sandwich generation, schizophrenia, Uncategorized, women's issues
Tags: Alzheimer's disease, Confessions of an Imperfect Caregiver, Dysphagia, elder care, family stories, hallucinations, health, help for caregivers, home care, in home caregivier, Lewy Body Dementia, nursing, Open Books Press, paranoid schizophrenia, Parkinson's Disease, prayer, precious moments, respite care, sandwich generation, Senior Health, sundowning
Frail and with growing memory problems, Rodger kept us on our toes as he struggled to navigate through a world that refused to make sense. Routine was vitally important; without it he wound down into confusion so complete all movement came to a halt. He was stuck somewhere in time.
Years after moving into our home, we would come upon him staring into space, mumbling softly about a missed appointment made fifty years ago or reliving a day in the life of a long ago soldier.
Sometimes with pity, always with patience, I would gently bring him back. “Orienting him to time and place,” as the doctor said.
His favorite room was the kitchen. Small and bright with sunshine, it opens onto a view of the Blue Ridge Mountains. Hills he called them, telling me about the fabulous peaks he once climbed in the mountain ranges of Italy. For a short time his memory was as sharp and clear as the cold mountain air of days gone by.
A charming boyish smile crossed his face as he spoke of his mother making polenta before going to church each day. Of rolling up the rugs and dancing on Saturday night in a kitchen glowing with firelight and youthful dreams.
In the kitchen, with no need of persistent voices orienting him to time and place, he was able to move. He was home again.
Hold on to the precious moments when they come for they are the blessings we receive from those who cannot thank us.
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25 Sep 2014
by Bobbi Carducci
in care giving, caregiver anger, Dementia, family issues, home health care, mental illness, nursing, sandwich generation, schizophrenia, Uncategorized, women's issues
Tags: Alzheimer's, Alzheimer's disease, angels among us, Bobbi Carducci, caregiver, caregiver advice, Caregiver Support, caregiving, Confessions of an Imperfect Caregiver, dementia, elder care, Family, family stories, health, heaven, heaven is real, help for caregivers, home care, Home Health, home health aide; miracle, Lewy Body Dementia, nursing, Open Books Press, paranoid schizophrenia, Parkinson's Disease, respite care, Senior Health, social workers
When I first saw this picture I was reminded of a day when angels made their presence known to me. There had been an ice storm and Rodger was in the hospital again. Unable to get there so see him for a few days I was worried about him and how he would react upon seeing me. Although he often said he didn’t mind being in the hospital, he always resented it and acted out when he got home. I was becoming overwhelmed and prayed often asking God to send help. I prayed again as I drove the winding road over the mountain into West Virginia to the VA hospital.
The following is an excerpt from chapter 25 of my book Confessions of an Imperfect Caregiver, the true story of my time as an imperfect caregiver.
“I was hoping for the best but preparing for the worst when the scenery began to change.
While the road was clear and the sun was shining brightly, every blade of grass, every twig on every branch of every tree I passed for miles, was encased in ice. I couldn’t believe the beauty that was unfolding before me.
Tears filled my eyes and I felt an amazing sense of peace. It’s like driving through heaven. Just as that thought came to mind, the song on the radio changed. The words filled me with awe, “There are angels among us.”
I knew in that moment my prayers would be answered. Maybe not right away. Maybe not in the time I hoped for, but I knew I was not alone.
When I got to the hospital, I was told a social worker wanted to speak with me. Bracing for another lecture on how I was out of line for speaking my mind, I was shocked when the first thing he said was, “Mrs. Carducci, do you need help?”
“What did you say?” I asked, not sure I heard right.
“I asked if you need help. I understand that you’ve been caring for your father in your home for a long time and that his needs are extensive. Are you able to leave him to go to the store or go out to dinner with your husband? When was the last time you took an afternoon for yourself?”
“Um …” I stuttered. “Wow. Yes, I need help. Who are you again?” I wanted to ask him to turn around so I could check for wings, but I was afraid to appear cheeky to God.
“Here’s my card. My name is Rob Angelis, and I’m a social worker. I’d like to arrange some help for you…I can offer you in-home assistance if you’re willing to accept it.”
“Oh, I’m willing to accept it.Please tell me more about the program and when we can start.”
Yes, there are angels among us. Many are family caregivers. In the United States alone there are between 65 and 90 million family caregivers and the numbers grow every day. Please do what you can to be supportive. The gift of time is precious to caregivers. A moment of respite is a godsend. Be an angel and reach out to a caregiver. Someone near you is praying for help.
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10 Oct 2013
by Bobbi Carducci
in Uncategorized
Tags: caregiver, elder care, family stories, health, home care, in home caregivier, nursing, sandwich generation
Welcome to my blog – The Imperfect Caregiver. My name is Bobbi Carducci and for seven years I was the primary caregiver for my father-in-law, Rodger Carducci. When my mother-in-law passed away one of the first things people asked was, “Who will take care of Rodger?” For my husband and me the answer was easy. He was coming to live with us. We had discussed and planned for the time when one or more of our parents would need our help. We were building a new, larger home despite the fact that our once crowded nest was now empty. There would be plenty of room for one or two more if and when the time came.
The house was still under construction when our mothers died within nine weeks of one another. We were devastated and reeling with loss but the knowledge that Rodger needed us kept us going. We would do everything we could to comfort him and provide a safe and loving home for him.
We didn’t know how ill he already was and how much care he was going to need as his condition became more and more complicated. Creative problem solving on the run is how I describe what I did every day for the next seven years. I cried, I got angry sometimes, I did a lot of praying, and had more than a few glasses of wine. Eventually I learned there is no right way to do this job and you don’t have to get it right every time in order to provide loving care to those who need you the most.
Every month I will share stories from my experiences and those of others who have been in our shoes in the hope you will learn from my mistakes and their wisdom while you take heart in knowing you are not alone.
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I 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.
The Imperfect Caregiver 
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