Welcome the Ghost of Christmas Past

Christmas is often a time of sorrow for families of those with any of the many forms of dementia. Often family and friends have stopped calling or visiting. Family relationships break down as one person provides daily care.

You may decide it’s just not worth it and spend the day trying to block out memories of happier times. I get it. But consider what may happen if you embrace the past for a few moments. You may be surprised by what your loved one remembers.

Welcome the Ghost of Christmas Past. Forget about putting up a tree if you don’t feel up to it. Don’t bother with a special meal unless someone delivers it to your door hot and ready to serve. Instead open the old albums and put out the oldest, most treasured ornaments. Play all the old Christmas carols. Cry for what is lost. Cry until the tears no longer come. Then, if you can, welcome the ghost of Christmas Past. Allow him to illuminate the memories you most treasure and share them with those in your care.

The image below is from Disney’s, A Christmas Carol, where the Ghost of Christmas Past appears as a candle illuminating events that formed the person Scrooge became.

ghost_of_christmas_past

Push aside the present and feel the love you shared on all the happy times you shared if not for the entire day, at least for a moment. The love and laughter you shared may be the most precious gift you receive this season.

One of my favorite treasured Christmas decorations from childhood is also a candle.

single-choir-boy-candle

This little guy, once part of a set of five, appeared in our home a few days before Christmas when I was eight years old. Upon our mothers passing in 2002 my sister, three brothers, and I each took one. Mine is now lopsided. His face is grimy from years of being packed away in newspaper, and his robe has a chip in it from being dropped a time or two. Despite the abuse he has endured over the years, he is far more precious than the thirty-five cents stamped on the sticker that still clings precariously to his underside tells us Mother paid for him.

If you have a favorite memory of Christmas past shared with the one in your care, feel free to post it in the comment section. I’d love to hear from you.

Winner, Winner

find some humor

Sometimes all you can do is laugh. The following is an excerpt from my book, Confessions of an Imperfect Caregiver.

When he first came to live with us, the only things he asked us to buy for him were Milk of Magnesia and prune juice. He had prescriptions for stool softeners and laxatives issued by his former doctors and continued by his new doctor. He constantly complained of constipation, greeting everyone he spoke to, including strangers, with “Hello. How’s everything? My bowels don’t move.” If he did happen to go, he made sure he told them about that as well, in great detail. It soon became clear he was taking far too much of the stuff. Every day, in the morning and at midday, he’d drink a large glass of prune juice, followed by Milk of Magnesia. Often he’d wait a few moments after taking it, look at his watch, and take some more. A few moments later he’d do it again. One day, after just telling me he’d had a bowel movement, I saw him drink another large glass of prune juice and reach for the Milk of Magnesia.

“Why are you taking that? “ I asked.

“For the constipation,” he said.

“But you just went.”

“That don’t count. It was all liquid.”

That’s when I knew I had to do something. No matter how we tried to explain it to him, he wouldn’t accept that it was the laxatives that were causing his problem. The more he took, the worse it got—and the more he worried—resulting in a vicious cycle that was interfering in his normal bodily functions. His psychiatrist said that it’s not unusual for a schizophrenic to keep track of what goes in and out of his body. In his mind, solid food was going in but nothing solid was coming out. That meant something was very wrong. Once I began to limit his access to prune juice and Milk of Magnesia, and started monitoring his use of laxatives, he started showing signs of stress. He paced and muttered to himself and began making frequent trips to the bathroom where he’d sit for hours, waiting for something to happen. I hated to see him like that, but I had to ease him off the stuff. His doctor tried to help by telling him that taking too many laxatives could interfere with his other medications and land him back in the hospital. He wasn’t buying it. When I wouldn’t give in, he complained to Mike, and when Mike backed me up, he called him one of the worst insults he could think of.

“You’re nothing but a dictator! You’re another Mussolini, that’s what you are!”

Later, after Rodger calmed down and we were getting ready for bed, Mike looked over at me and shook his head. “Mussolini? Now I’m Mussolini?”

I couldn’t hold it in any longer. The giggles I’d been trying hard to stifle came rolling out. “The Mussolini of laxatives!” I laughed harder. “You Fascist poop dictator!”

Mike looked at me in confusion for a moment, and then the hilarity of the situation hit him and he was laughing as hard as I was. I laughed so hard I got the hiccups, and that made us laugh even more. We ended up rolling on the bed, laughter feeding more laughter, until we were exhausted.

“Oh wow, I needed that,” I said when I was finally able to catch my breath.

“Me too,” Mike agreed. “I don’t know how you do it every day. He’s so damned stubborn. I’m glad I’m not like that.”

“Right.” I poked him the ribs. “Me either. I’m not stubborn. I’m determined.”

“Yes, dear,” Mike said with a grin. “Do you think you can determine to keep loving me through all this?”

“Sure, if you can determine to come over here and give me a kiss.”

“Sure thing, Babe.” He enveloped me in his arms and kissed me, both of still chuckling.

If you’ve have a winning moment that laugh you laughing, I invite you to share it here:

And if you want to vent – Please join me in pinging on Dr. Phil to use his resources to help caregivers via creating a grant for respite care and other kinds of help for caregivers who need it most.  Send him a message at www.drphil.com

The Agony of Relief

For seven years I was his constant companion. The one he railed against and accused of trying to poison him. The one he insisted was his best friend on the good days when he was lucid.

“Without her I’d be a gonner,” he would say.

In the beginning I was his chauffer taking him to his many doctor appointments. At first we took the 40 minute drive over the mountain to the VA hospital every three months.  As his various ailments, including dementia and Parkinson’s disease, progressed the appointments came more often.  Dysphagia came next. He could no longer swallow properly. His diet was limited to pureed food and thickened liquids. He had trouble swallowing his saliva. Aspiration pneumonia resulted in several long hospital stays weakening him further and requiring doctor visits once a month.  Then he had a heart attack and a pacemaker was inserted. Blood clots developed in his arm as a result. Frequent blood tests to monitor his clotting ability meant more trips to the hospital. Eventually we were going every week.

He continued to fail and eventually he entered home hospice care and we no longer made the drive.

He was hearing voices again and becoming more delusional as the dementia progressed and the medication he had been taking since his early twenties for schizophrenia began to lose effect.  Still, we prayed for a miracle comeback. He’d done it before. We’d think we were losing him, prepare for the worst and just when we began to lose hope he would gather the inner resources and strength that had defined him all of his life.

He’d gone from farm boy to defiant resister of the Gestapo who had taken over his country. He moved to America as young man to start a new life. He enlisted in the Army to serve his new homeland. It was while in the service he had his first psychotic break.

This brilliant man who spoke seven languages and held advanced degrees in literature and mathematics would never be the same. Electric shock treatments, ice baths, experimental treatments and increasingly strong antipsychotic drugs robbed him of memory and kept him sedated at all times. After thirteen years he was released. He married and raised two sons. He was a hero in so many ways.

As he began to fail I did too. Sleepless nights, constant stress, the guilt that came with knowing I couldn’t save him took its toll. The two of us were barely functioning.

I fed him. Changed his soiled Depends. Wiped his bottom. Bathed him. Dressed him. Sat up all night listening to him breathe.  The night he died Mike and I sat with him, holding his hand, doing everything we could to keep him comfortable.

In the early hours of his 83rd birthday he took his last breath.  This amazing man who had challenged me in so many ways and taught me so much about what real strength of character looks like was gone.

It took a while for the tears to come.

“What’s wrong with me?” I asked my husband.

And then it started. A slow trickle at first, followed by the first stabs of grief. I cried so long I wondered if it would ever stop. When it finally did, I wiped my eyes, blew my nose and started over again and again and again. It was only after I had exhausted my tears and my body that I could face the awful truth. It was not only grief that brought me to my knees. It was the agony of relief. His suffering was over and that meant I was finally free.

Intellectually I know my feelings were normal under the circumstances but there is still a little voice inside that continues to ask, What’s wrong with me?”

I continue to ask for your support and comments in response to the Dr. Phil Challenge to use his resources and the Dr. Phil Foundation to establish a grant to offer real help to 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:

 

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.

****

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

superpower

When I was a young mother I often wished I knew what my babies were thinking. I wanted to know what the world looked to them, how it felt to be so dependent. Were there moments when they felt alone and wondered how they had landed in this place so different from what they had come to know? When did they recognize me as someone who loved them and would protect them always?

Caring for Rodger I wished again for that same super power. I never received the ability to read minds but I never stopped trying to figure out how to keep him warm, comfortable, and safe. Some days the things I tried worked, some days they didn’t. There were days many days when my actions confused and frustrated him. But there were also many when he recognized me as someone who loved him and would protect him always. Love and care are the super powers we have and that dear caregiver is everything to them regardless of their age or needs.  Be proud of who you are and what you do.

If you have a super power, or wish you did, tell us about it here.

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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

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