Remembering Rodger

Rodger Carducci

 July 26, 1926 – July 26, 2009

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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

 

A Much Nicer Way to Say What I Was Thinking

open your mouth only if

Shut … the … hell … up!  That’s what caregivers would like to say. No not say, scream, when family members drop by for a short visit and begin to offer comments like this:

“She looks fine to me. Why do pretend taking care of her is harder than it is?”

“Mom told me her things are disappearing. What’s going on?”

“What do you mean it’s time to look at placing Dad in a nursing home? I promised him I’d never do that.”

“He’s lost a lot of weight. Why aren’t you feeding him enough?”

“I can’t take her. I have a very busy life. You get to stay home all day and watch TV.”

“I should have known better than to invite you! You always have some lame excuse.”

“We can’t make it for his birthday. We’re leaving for vacation in Italy that day.”

Caregivers, I invite you to share some the absurd things family and friends have said to you. Feel free to also add what you would like to have said in return and didn’t. (If responded with a great comeback feel free to share that too.)

Friends and family members – I challenge you memorize and follow the advice in the quote above. Dr. Phil, that goes for you too.

More Caregivers comment on  the Dr. Phil Challenge to use his resources and the Dr. Phil Foundation to establish a grant to help the caregivers who need it most.

steven chandler – Comment: At 52 I am now a health care provider for my 91 year old father I’ve gone through all my savings is a constant struggle my sister took all of my father’s money in 2006 he was sick at the time and she convinced him to change his will and he gave her all the money I’m here for my father 24 hours a day and If it wasn’t for me the last year and a half he would be dead. I’ve put my life on hold I put my relationship of 8 years on hold and it’s overwhelming at times

Sherri Diller – Comment: I fully agree!!  Dr.  Phil,  just take a look at the state differences that caregivers go through.  Boils my blood.  All types of government agencies claiming to help.  I have worked in a number of nursing homes and I am a single daughter,  caring for her single mom w/stage 4 alzhiermers,,  both from a dysfunctional background.  I love her dearly.  But I dont trust the system.  Your help is so needed.  My mom deserves so much more.  I am all she has.  When she goes,  I am the only one left.

Christina – Comment: Yes Bobbi, I will share your blog post. It’s so important. For some reason the word ‘respite’ goes unheard by many of those who are not caregivers.  I don’t know how many times I was asked what I wanted and I answered the same thing every time, respite hours for myself so I could catch up on sleep or just sit and do nothing. The answer was always, yes, but what else? I was even recommended to take antidepressants! Thankfully I had learned to speak up and stand up for both myself and my husband by the time that was suggested. They never mentioned it again!

As caregivers, even though we most definitely save the state money we are not looked upon as the assets we are. My conclusion to that crazy reality is that we are actually stopping the money from flowing in a certain direction that may be advantageous to some (greed!). My husband would have been in a nursing home years before his passing if I had let them take him. No rime or reason to that since that would have cost thousands of dollars per month compared to a few respite hours for me. Fortunately he never had to go to a nursing home.

Pat DiCesare – Comment: Dr. Phil, I think your audience would benefit from hearing Bobbi Carducci’s amazing and emotional story of her experience of being a caregiver to her father-in-law.

Beth Anderson – Comment – If only there could be a place to go where, at no cost to the caregiver, they could bring their loved ones to, to be cared for, if only for an hour or two. The caregiver could get a workout in, run a few errands or just sit and have some quiet time. I wish you luck in your efforts to help caregivers, but some family members have no idea what that caregiver does, how they feel, what they need or how they struggle with day to day activities. Thank you again.

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Every 26 minutes another person in the U.S. is diagnosed with Alzheimer’s disease or another from of dementia.  The numbers are growing every day. Help me get help for caregivers.

Good Morning Caregivers – Get Off My Mountain

Many paths to success

Just as there are many paths up the mountain there are the many paths of caregiving.  How ours will twist and turn depends on the reason it began in the first place and how the one in our care responds to the many obstacles in the way. Will he reach for me to guide him along the way or will he insist on refusing my help only to fall and accuse me of pushing him?

Every day, around each new bend, we are faced with something unexpected. It could be a breathtaking moment when the air clears and the sun breaks through the clouds of confusion and he smiles. I feared I’d never see that twinkle again. “Thank you, Lord,” I whisper.

Far more likely it’s another loss making every step we take together more difficult. Our path is longer and far more arduous than we could have imagined. It is also the way that works for us. We figure it out as we go along.

 The last thing we need is “the one who runs around the mountain, telling everyone that his or her path is wrong.”

Unfortunately there seems to be as many of them as there are of us. If you are dealing with someone like that send them this Hindu proverb and tell them the Imperfect Caregivers says, “You are not helping. You are making things more difficult.”

GET THE HELL OFF THE MOUNTAIN

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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

Good Morning Caregivers

It’s your turn again. Please tell me how you are doing. If you’d like to share a bot of your story, please do. It may help another caregiver.

how do you feel today

Good Morning Caregivers

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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Good Morning Caregivers

A Caregiver’s Dream

One of the most common bits of advice for caregivers is to get a good night’s sleep.

“Goodnight.”

What wonderful images that simple word brings to mind.  I close my eyes and see myself drifting off to sleep in the biggest most comfortable bed on the market. I’m covered with a whisper soft blanket. I’m hugging my pillow. A tiny smile hints at sweet dreams to come.  When morning arrives I will awake refreshed ready to face another day caring for my loved one.

That is what I was supposed to do, right? That’s what all the experts said.  Trust me, it’s what I would l have loved to do.

Enter reality:

“Goodnight, Rodger.”  “Goodnight.”

It was eight o’clock in the evening and he had just had his last breathing treatment of the day. Only one round of medications was left to be taken. I had two hours to spend some time with my husband. We were exhausted and only half listening to each other.  I kept one ear open in case Rodger needed me. Nodding at my husband to indicate I was paying attention, I was also fighting to keep my eyes open.

At 10:00PM I got up and took Rodger his last medication of the night.  He took it without complaint. Yea!

“Goodnight, Rodger.” “Goodnight.” I was too tired to brush my teeth. Tomorrow was another day and I hadn’t had much to eat anyway. Did I take a shower in the morning? I couldn’t remember.  I’d do that in that the next day too.  After saying my prayers I closed my eyes and waited for sleep to come. My thoughts looped and circled around on themselves. What ifs and why didn’t I competed with I should have until I finally lost consciousness.

12:15 AM – His bed alarm went off. He hated the alarm. He hated the bedside commode and he resented me for making him use them. I ran down the hall to discover he had scooted down to the foot of the bed and managed to squeeze through the space between the bedrail and the foot of the bed.  He was clinging to the rail, trying to keep from falling.

“Here, let me help you.”  I eased him over to the commode and helped him stand to pee. He refused to sit.  “I’m not a girl!”

“Why didn’t you call me if you wanted to get up?”

“I didn’t want to bother you. I used my short cut.”

“Short cut?” It took me a few moments to understand he was talking about the gap between the bedrail and the end of the bed.

“You aren’t supposed to get up unless someone is with you. You could fall. That’s why the doctor ordered an alarm for your bed.”

“The doctor sent it?”

“He explained it when you saw him last month?”

‘I don’t remember. How does he know if I go to the bathroom? It’s none of his business.”

Five minutes later we were both back in bed.

12:45 AM– His bed alarm went off.  That time he tried to climb over the rail and was stuck half way.

“What are you doing?”

“I have to pee.” I got him up and helped him to the commode. He stood for a couple of minutes. Nothing happened.

“I thought I had to go.” We went back to bed. 2:00 AM – The bed alarm went off. He was stuck half way out of the bed again. We repeated the scene above.  2:10 AM – Alarm went off again. His foot is stuck in the rail.  3:05 AM – Alarm went off again. He had scooted down to the foot of the bed and was trying to get up.

“I have to pee.” That time he did. 3:15 AM – Alarm went off again.  “I’m thirsty.”   I went to the kitchen and mixed some thickener in water and helped him spoon it into his mouth.

4:00 AM – He was calling for me.  I rushed to room. His covers were tangled around him and he couldn’t move.  I got him into a chair and arranged his bedding.  Had him pee while we were up. 5:15 AM – The bed alarm went off again. I knew I was up for the day.

The next day, and the next, and the days after that? Repeat the above actions from the beginning.  Sometimes it was the voices that woke him.  Some nights he thought it was day and he was ready to start his routine.

Believe me, I followed all the suggestions, I kept him up during the day. It didn’t matter. I put him in adult pull-ups so he didn’t have to use the bedside commode. I’d find them torn to shreds the next time I went to his room.   I followed all the advice about soothing music and quiet time before bed. I tried it all again and there we were night after night. Sometimes I made a bed for myself on the floor beside him so he knew he was not alone.  Still the alarm went off through the night.Get a good night’s sleep? I was ready. I even drifted off for a while, and then his bed alarm went off.  Again.

Caregivers do need a good night’s sleep and they know your suggestions are well intended and sincere. What they want you to know is that it’s not that simple. Their days and nights are full, minute to minute, crisis to crises.  So if you are wondering how to help a caregiver my suggestion is a gift certificate for a few hours of respite each week so she or he can take a nap.

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Sometimes Caregiving Looks Like This

Pull Up Big Girl Panties

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.

Rough Week

 

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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NaBloPoMo November 2014

Brother Where Art Thou?

Questions Caregivers Would Ask  Family Members If They Dared

Why aren’t you here more often? What gives you the right to question and demand answers about how diminished he’s become when you only come by once or twice a year?

Why don’t you call once week or even once a month if you’re concerned?

What? You’re leaving on vacation and will be gone for three weeks? I haven’t had a vacation, or even a day off, in five years. Hell, an hour to myself would be a treat.

How is he? What do you mean, how is he? He’s sick. He has dementia and Parkinson’s disease. He can’t swallow anything but pureed food. He forgets where he is. He forgets who we are. He’s failing fast. You should stop by and see him before you go away. Will you?

You have too much to do to get ready for your trip? You’ll call when you get back? If he needs anything while you’re gone give you  want me to a call on your cell phone?”

And if I call what will you do? Will you interrupt your trip? Will you come home early to care for him? We both know the answer to that. You already paid for the hotel. There will be a big fee for changing your airline tickets. It doesn’t make sense to rush back when there is nothing you can do for him.

There’s nothing you can do for him or nothing you choose to do for him? Where are you when he misses you? Where are you when he’s in the hospital again? Where are you when he’s tired of dealing with me and we both need a break?

Where are you when the sun goes down and he gets combative?

Where are you in the middle of the night when he sets off the bed alarm every few minutes from dusk to dawn?

Where are you when the doctor asks is there is anyone else to help care for him because it’s clear the stress is taking a huge toll my health?

Where are you when refuses food and drink? Where are you when he takes his last breath?

Brother Where Art Thou?

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Brother where art thou and where will you be when I can’t do this anymore?

 

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