It’s Not Always Alzheimer’s – Parkinson’s and Dementia

Parkinson’s Disease and Dementia: A Caregiver’s Primer
By Leslie Vandever

Parkinson’s disease is a gradual, progressive, degenerative disorder of the central nervous system. It causes nerve cells in the brain to stop producing enough of the chemical dopamine, which is vital for regulating movement.

Parkinson’s diseases causes tremors, muscle stiffness, slowed movement, impaired balance, and problems with standing, walking, and gait, and reduced facial expression.

Other symptoms—called non-motor or dopamine non-responsive symptoms—may include cognitive impairment, trouble sleeping, mood disorders, constipation, problems with speech and swallowing, low blood pressure when standing, unexplained pain, drooling, and the loss of the sense of smell.

Dystonia—an involuntary, prolonged muscle contraction—is also common with Parkinson’s disease. Sometimes associated with pain, like cramps, dystonia can involve an isolated area or the entire body. Caused by a lack of dopamine in the brain cells, dystonia is generally treated with L-dopa (levodopa), a medication that raises dopamine levels.

Another symptom, dyskinesia, is “a difficulty or distortion in performing voluntary movements,” according to the Michael J. Fox Foundation for Parkinson’s Disease, This one, however, isn’t caused by the disease itself. It’s a side effect of long-term therapy with levodopa.

Depression and other mental health issues are also common.

Around a million people in the U.S. live with Parkinson’s disease, and about 5 million worldwide. One in 100 people over 60 get the disease, but people as young as 18 have been diagnosed. Men have a somewhat higher risk of getting the disease than women.

Scientists don’t know what causes Parkinson’s disease, or why some people get it and others don’t. Over the last 10 years researchers have started to find evidence that genetics and environmental factors, either by themselves or combined, may be involved. Most scientists agree with this theory.

There is no cure for Parkinson’s disease. But the research into better treatments—and eventually, a cure—is ongoing.

The disease is, by itself, a hugely disruptive—even devastating—turn in the life of anyone diagnosed with it. The same goes for the caretaker. As Parkinson’s progresses, the caretaker must manage medications—many of which are taken on a careful schedule that can’t be disrupted without causing consequences—and at the same time, help the patient cope with the characteristic physical and mental symptoms of the disease. It can be, in a word, exhausting.

Now, add progressive dementia into the mix. It strikes a minority of Parkinson’s patients, either in the form of Parkinson’s dementia or Lewy Body Dementia. “LBD” is the umbrella term for both, though their earliest symptoms differ. Generally, people whose dementia occurs within a year of their Parkinson’s diagnosis are also diagnosed with LBD.

Lewy Body Dementia is named for the scientist Friedrich H. Lewy, who, in 1900, discovered these abnormal protein deposits (bodies) in the brain. They disrupt its normal functioning, including perception, thinking, and behavior. LBD strikes each person differently, and the symptoms can fluctuate from hour-to-hour and day-to-day.

Symptoms may include impaired cognition, attention, and alertness; well-formed, detailed, recurring hallucinations; hallucinations of touch and hearing; visuospatial abnormalities; and loss of consciousness and falls. They may also include REM sleep behavior disorder (RBD), in which the patient may act out his dreams while sleeping.

Caregivers for people with Parkinson’s disease and RBD should, first and foremost, take care of themselves, both physically and mentally. It’s a huge task and responsibility. Don’t be afraid to ask for support from family, friends, and from your community. You can find a lot of information about both diseases, and where to get help, in the references below and by visiting Healthline.

Leslie Vandever is a professional journalist and freelance writer with more than 25 years of experience. She lives in the foothills of Northern California.

References:
• Coping with Dementia: Advice for Caregivers. (n.d.) Parkinson’s Disease Foundation. Retrieved on July 17, 2014 from http://www.pdf.org/en/spring03_dementia
• Caring for Someone with Parkinson’s. (n.d.) Parkinson’s UK. Retrieved on July 17, 2014 from http://www.parkinsons.org.uk/content/caring-someone-parkinsons
• Dementia and Parkinson’s. (n.d.) Parkinson’s UK. Retrieved on July 17, 2014 from http://www.parkinsons.org.uk/dementia
• Parkinson’s Disease and Parkinson’s Dementia. (n.d.) Helpguide.org. Retrieved on July 17, 2014 from http://www.helpguide.org/elder/parkinsons_disease.htm
• Whitlock, C. 5 Caregiving Tips for Lewy Body Dementia. (2013, March 15) National Parkinson Foundation. Retrieved on July 17, 2014 from http://www.parkinson.org/Caregivers/Caregivers—On-The-Blog/March-2013/5-Caregiving-Tips-for-Lewy-Body-Dementia
• Parkinson’s Disease. (2014, May 28) Mayo Clinic. Retrieved on July 17, 2014 from http://www.mayoclinic.org/diseases-conditions/parkinsons-disease/basics/definition/con-20028488
• NINDS Parkinson’s Disease Information Page. (2014, July 14) National Institute of Neurological Disorders and Stroke. National Institutes of Health. Retrieved on July 17, 2014 from http://www.ninds.nih.gov/disorders/parkinsons_disease/parkinsons_disease.htm
• What Causes Parkinson’s? (n.d.) The Michael J. Fox Foundation for Parkinson’s Disease. Retrieved on July 17, 2014 from https://www.michaeljfox.org/understanding-parkinsons/living-with-pd/topic.php?causes
• What is LBD? (n.d.) Lewy Body Dementia Association, Inc. Retrieved on July 18, 2014 from http://www.lbda.org/category/3437/what-is-lbd.htm

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A Few Kind Words

Kind words echo

Caregiver be kind to yourself. Don’t judge yourself harshly or second guess the decisions you make. Every day you do the best you can and no one can ask for more, not even you.  Mornings, as you prepare to care for loved one, remember these words by Mother Teresa and know you are not alone.

 

 

Someone In Your Town Needs Help

Caregiver needs caregiver

Someone  in your town needs help.

Often when we think of caregivers our thoughts go to people caring for aging parents with Alzheimer’s disease. However, that is only part of the story. Included in this vastly growing demographic are spousal caregivers, teens caring for parents, grandparents or siblings, parents caring for children with lifelong disabilities and friends caring for those with no family support. Most quietly care for their loved ones for years often going without sleep, proper medical care, or time to take a bath. They skip meals and rarely leave the house.

Caregivers need someone to care for them. Not every day. Not for hours at a time. Caregivers long for someone to say, “I’m going to the store, make a list of what you need and I’ll pick it up for you.” When you do this include an inexpensive bouquet of flowers or a pint of ice cream as a surprise.

Every now and then make two batches of whatever you are cooking for dinner and take one to the caregiver.

Drop by on the weekend and let the caregiver take a shower or a bath free of worry their loved one will fall or need help.

Simply sit and talk to him or her for a while. Let her vent. Let himwatch a football game if he wants to.

Little things mean so much to caregivers. They are not superheroes or saints. They are people like you and me. People who need kindness and understanding.

Someone in your town needs help.

The following information is from The Family Caregiver Alliance, National Center on Caregiving, https://www.caregiver.org/selected-caregiver-statistics

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

Economic Value

  • Caregiver services were valued at $450 billion per year in 2009- up from $375 billion in year 2007.
    [Valuing the Invaluable: 2011 Update, The Economic Value of Family Caregiving. AARP Public Policy Institute.]Updated: November 2012
  • The value of unpaid family caregivers will likely continue to be the largest source of long-term care services in the U.S., and the aging population 65+ will more than double between the years 2000 and 2030, increasing to 71.5 million from 35.1 million in 2000.
    [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

Gender

  • More women than men are caregivers: an estimated 66% of caregivers are female. One-third (34%) take care of two or more people, and the average age of a female caregiver is 48.0.
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC.]Updated: November 2012
  • Male caregivers are less likely to provide personal care, but 24% helped a loved one get dressed compared to 28% of female caregivers. 16% of male caregivers help with bathing versus 30% of females. 40% of male caregivers use paid assistance for a loved one’s personal care. Approximately 14.5 million caregivers are men out of the 43.4% who care for an older family member.
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC.]Updated: November 2012
  • The gender balance shifts to close to equal participation among 18 to 49 year-old-care recipients (47% of caregivers are male), while among the 50+ recipients, it tips to females (32% male, 68% female).
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC.]Updated: November 2012
  • Research suggests that the number of male caregivers may be increasing and will continue to do so due to a variety of social demographic factors.
    [Kramer, B. J. & E. H. Thompson, (eds.), “Men as Caregivers,” (New York: Prometheus Books, 2002).]Updated: November 2012

For more facts and figures go to https://www.caregiver.org/selected-caregiver-statistics

Thoughts of Rodger

Bobbi with Rodger
As I prepare for the offical launch of Confessions of an Imperfect Caregiver on Saturday, July 26, 2014, I have been reading passeges of the book in order to revisit memories of him as a young man and to remember the years he spent with Mike and me. He is in our thougths and prayers daily and it is my sincere hope that his story touches you as deeply as it touched us.

The following excerpt is from Chapter 9 – Confessions of an Imperfect Caregiver.

Whoever wrote in Rodger’s chart, “Intelligence is estimated to be below average,” was very wrong.

Rodger was a serious scholar, described by his younger brother as, “a bookish teenager who took advanced degrees in mathematics and literature at an early age. He tried to help me with my schoolwork, but what came easy for him was very hard for me. He’d try to help me with algebra but he’d go so fast I couldn’t keep up.”

Rodger graduated Summa Cum Laude from college. He spoke six languages, including Latin, Italian, French, German, English, and some Yugoslavian. Remarkable for a man who grew up on a farm in Tornimparte, Italy.

“We raised or grew everything we needed to live. We grew our own wheat, and at harvest time all the farmers would go in together and rent a threshing machine. It would take a long time before all the work was finished, but we did it. Then the women make pasta and bread. Every day, my mother, she get up, make the polenta, and go to church. Then she come home and work all day. She cook, she clean, she open a store in our house. She do all she can to make money. My father, he’s in America working in the coal mines. Life is hard for everybody,” Rodger said.
The family farm included a vineyard, and their homemade wine was sold in the store alongside the produce and bread to keep the farm running and the family clothed and fed.

While Rodger kept the books for both the vineyard and the store, his younger brother helped more in the fields, with the harvesting, and in the gardens. Rodger also did his share of hard work. His shoulder was scarred from a deep cut he received while carrying heavy loads of grapes down a steep hill to be crushed and fermented into wine.

“It hurt like hell, but there was nothing I could do. I had come too far. I couldn’t go back, I had to keep going.” The cut to his shoulder must have been very deep. It damaged a vein in his wrist that remained enlarged and sensitive the rest of his life.

The more I learned about him, the more I admired him. There I was, caring for an extraordinary man whose native intelligence was far beyond my own. He had struggled to help his family survive while still little more than a boy, only to be struck down by an illness few people understand, the treatment of which left him with huge gaps in his memory, making it impossible for him to do anything but menial labor.

It became obvious to me that bits of his superior intelligence remained. Even after all the years of being drugged and probed and experimented upon, he’d managed to build a life and raise a family. Now, in his old age, the deficits were mounting. Sadly, the blessings of his youth, combined with the severity of his losses, would leave him aware enough to know something was very wrong but unable to figure out what it was or why he couldn’t do the one thing he wanted most—take care of himself. The lengths to which he’d go in order to prove he could do it would result in seven years of cat-and-mouse games that tried us both and bound us together through shared experiences that were at times funny, but far too often were frustrating and confusing for both of us.

“It don’t make sense,” was a phrase he used almost daily. More often than not, I had to agree.

To purchase a signed copy fo Confessions of an Imperfect Caregiver contact Second Chapter Books in Middleburg, VA by email secondchapterbks@gmail.com or via phone (540) 687-7016

Avaialable in print or ebook form on Amazon and Barnes&Noble

Was I Crazy?

Crazy lady cartoon for caregiver

“You’re a little bit crazy, you know that?” my father-in-law said.

It wasn’t the first time he’d accused me of being crazy and it sure as hell wasn’t the last. Despite the fact that he’d suffered from mental illness long before age-related dementia set in he was convinced he could take care of himself and I was out of my mind to think otherwise.

Sometimes I agreed with him. About the crazy part anyway. Isn’t it considered crazy to keep doing the same thing over and over expecting a different result?

By that definition we were both nuts.

He figured if he took every opportunity to take off down the hall without his walker whenever my back was turned he’d convince everyone he didn’t need it. After all, he’d only fallen once and it didn’t kill him. I hoped if I kept catching him and leading him back to safety he’d begin to accept the walker and use it without prompting.

When he developed Dysphagia and could no longer swallow regular food and drink, I prepared fresh purees for him every day while doing everything I could to make them healthy and tasty. I learned that a lot of his favorite foods could be prepared that way. It was worth spending a bit of extra time so he could enjoy his own version of whatever meal we were having. Pureed hot dogs and potato salad on the 4th of July. Pureed turkey and dressing for Thanksgiving worked very well. So did the pureed pasta with homemade spaghetti sauce. I’m still proud of the pureed tuna and tomato sandwich and pureed cupcake he often had for lunch. Was I crazy to go to all that extra work instead of ordering prepared purees for him? Hormel makes a line of foods for people with Dysphagia and I did order some of them. But, I didn’t want to rely on them. Eating was one of the few pleasures he had left and I wanted him to experience the flavor of his favorites. He was convinced I was crazy to think food could be dangerous.

“Something’s wrong with her. Food goes in your stomach not your lungs. You can’t get pneumonia from eating,” he’d tell the doctor at every visit. Eventually the doctors tuned him out, not bothering to explain again why he couldn’t have a sandwich or big juicy orange.

Sometimes I couldn’t help but wonder, was I crazy to become a caregiver? Was I crazy to lie awake at night trying to figure out new ways to get through to him? Was I crazy to keep fighting for him and with him when it became clear that no matter what I did or how hard I tried he would continue to fail?

Maybe. But sometimes crazy is what it takes to get the job done and maybe my crazy was just what his crazy needed. I hope so.

For more information about Dysphagia and where to find products for your loved ones click on any of the following links:
http://thickit.com/products/purees/?gclid=Cj0KEQjw5-OdBRDW3ceD9fL0r4QBEiQAW7htXesa0NQ2vOYLfvQkg6Je4E7uLezTgEiuIwXFAHWIHu8aAnrt8P8HAQ
http://www.hormelhealthlabs.com/2colTemplate_product.aspx?page=CO_ThickEasyBreakfast&cond_id=117&cat_id=122

http://www.swallowingdisorderfoundation.com/swallowing-support-groups/

http://www.patient.co.uk/support/dysphagiaeu

http://www.hormelhealthlabs.com/2colTemplate_product.aspx?page=CO_Dysphagia&cond_id=117&cat_id=117

http://www.medicinenet.com/swallowing/article.htm

http://www.mayoclinic.org/diseases-conditions/dysphagia/basics/definition/con-20033444

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Sometimes I Have to Step Away

Even five years after Rodger’s passing the need for respite arises sometimes. For seven years he and I were almost constant companions. As his need for care grew so did my commitment to him. An undying connection was formed.

I started writing our story while deep in the midst of it. That didn’t work. There was no time to write and, even if there had been, I was too spent to form the words. I stopped writing.

I tried again a few months after his passing. Too soon. Much too soon. When writing a memoir you have to have some distance from the work. I had none. I’d begin a passage and freeze, coming aware of where I was an hour or more later with not a single word being added to the scene. While the keyboard lay dormant my mind had carried me back in time. I was living it again. In one way that was good. Putting emotion on the page is something writers strive to do.

“If you don’t cry when you write it people won’t cry when they read it.”

crying baby

I cried. I cried too much and too often. I relived the feelings of guilt and frustration that sometimes threatened to overwhelm me when I tried to figure out how to care for him. I smiled through my tears when I remembered the amusing or tender moments we shared. I cried because I missed him and when I imagined I heard the telltale click, click that had always accompanied the release of the brakes on his walker. I became moody and had trouble sleeping. I started inventing reasons to avoid writing. It was easy to stay away. I had a deadline for a short story or a contest. I was too busy teaching workshops or reading stories submitted by students. I wrote a children’s book and became very busy promoting that. Every day I invented another reason to avoid our story. It hurt too much to go there again.

Just as he had been when he was alive, Rodger remained a focus in my life. His story deserved to be told. I needed to tell it. I warned my husband that I was going to be reliving it and it was going to be hard. There would certainly be days when I’d be out of sorts and emotional but I could not walk away from it this time. He braced himself for what was coming and said he understood.

I began to write gain. I still froze when crafting certain passages but only for a few moments before moving on. I cried and hope readers will shed a few tears when they read it. I cried a lot when I wrote the last line. I closed the file and walked away from it for several days. Then came the revisions and the long submission process and finally the offer to publish. After the celebration ended it was time to get work again. Rewrites and final edits had to be done. I read and reread the entire book several times. I had attained enough distance to finish this time but for weeks I was emotionally drained. And that is why this blog has been silent for a while. I needed a bit of respite.

Confessions of an Imperfect Caregiver will be released by Open Books Press on Rodger’s birthday, July 26, 2014. Details on how and where to order will be posted on this blog and on my website. www.bobbicarducci.com

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ELDER RAGE

Elder Rage: How to Survive Caring for Aging Parents
By Jacqueline Marcell, Author, ‘Elder Rage’ www.ElderRage.com

For eleven years I pleaded with my ‘challenging’ elderly father to allow a caregiver to help him with my ailing mother, but he always insisted on taking care of her himself. Every caregiver I hired soon sighed in exasperation, ‘Jacqueline, I just can’t work with your father. His temper is impossible to handle and he’s not going to accept help until he’s on his knees himself.’

When my father’s inability to continue to care for my mother nearly resulted in her death, I stepped in despite his loud protests. It was heart-breaking as one minute he’d be my loving dad and then some trivial little thing would set him off and he’d call me nasty names and throw me out of the house the next. I took him to several doctors, only to be flabbergasted when he could act completely normal when he needed to.

Finally I stumbled upon a thorough neurologist, specialized in dementia, who put my parents through a battery of blood, neurological, memory tests and P.E.T. scans. After ruling out numerous reversible forms of dementia, such as a B-12 and thyroid deficiency, and evaluating their medications, I was stunned by the diagnosis of Stage One Alzheimer’s in both of my parents–something all their other doctors missed entirely.

What I’d been coping with was the beginning of Alzheimer’s, which starts very intermittently and appears to come and go. I didn’t understand that my father was addicted and trapped in his own engrained bad behavior of a lifetime of screaming and yelling to get his way, but that it was coming out intermittently in inconsistent spurts of irrationality. I also didn’t understand that demented does not mean dumb (a concept not widely appreciated), and that he was still socially adjusted never to show his ‘Hyde’ side to anyone outside the family. Conversely, my mother was as sweet and lovely as she’d always been.

Alzheimer’s makes up 60-80 percent of all dementias and there’s no stopping the progression nor is there yet a cure. However, if identified early there are four FDA medications (Aricept, Exelon, Razadyne and Namenda–and many more in clinical trials) that in most people can mask dementia symptoms and keep the patient in the early independent stage longer.

Once my parents were properly treated for the Alzheimer’s, as well as the often-present depression in dementia patients, and then my father’s aggression, I was able to optimize fluid and nutrition with much less resistance. I was also able to manage the rollercoaster of challenging behaviors. Instead of logic and reason, I learned to use distraction and redirection. I capitalized on their long-term memories and instead of arguing the facts, I lived in their realities of the moment. I also learned to just go-with-the-flow and let hurtful comments roll off. And most importantly, I was able to get my father to accept two wonderful live-in caregivers. Then with the tremendous benefit of adult day health care five days a week for my parents and a support group for me, everything finally started to fall into place.

Alzheimer’s disease afflicts more than 5.4 million Americans, but millions go undiagnosed for many years because early warning signs are chalked up to stress and a ‘normal’ part of aging. Since one out of eight is afflicted with Alzheimer’s by age 65, and nearly half by age 85, healthcare professionals of every specialty should know the 10 Warning Signs of Alzheimer’s and help educate patients and families so everyone can save time, money–and a fortune in Kleenex!

TEN WARNING SIGNS OF ALZHEIMER’S
www.ElderRage.com/Alzheimers.asp

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Jacqueline Marcell is the author of ‘Elder Rage’, a Book-of-the-Month Club selection receiving 480+ 5-Star Amazon reviews, 50+ endorsements www.ElderRage.com/review.asp, is required reading at numerous universities for courses in geriatrics and considered for a film. EXCERPT: www.ElderRage.com/samplechapter.asp. She is also an international speaker on Alzheimer’s, as well as breast cancer which she survived after caring for her parents. She also speaks on caregiver stress and illness, and Alzheimer’s now being termed ‘Type 3 Diabetes’, the Obesity Epidemic and Sugar Addiction. www.ElderRage.com/speakingengagements.htm

Doctor, can you hear me?

Patient safety

To a doctor schizophrenia is: “A long-term mental disorder of a type involving a breakdown in the relation between thought, emotion, and behavior, leading to faulty perception, inappropriate actions and feelings, withdrawal from reality and personal relationships into fantasy and delusion, and a sense of mental fragmentation.”

For his psychiatrist the treatment for Rodger entailed medication to control his symptoms and regular visits to assess his thoughts and behavior. He was treating the disease. Every three months Rodger would assure him he was taking his medication and he was not experiencing hallucinations or hearing voices.

“She worries too much. Don’t listen to her.”

At home I was dealing with the illness. Despite Rodger’s insistence that everything was fine, I knew it was not. He paced the upstairs hall day and night, muttering and gesturing. I found him on his hands and knees trying to catch something scooting across the floor. Something only he could see. I reported all that and more to his doctors on every visit.

They listened to him. They got tired of hearing from me.

I knew when he was hearing voices. It was evident in a certain tilt of his head as he listened to the silence around him and in the sudden bursts of laughter when he was alone in his room. They goaded him into seething resentment when I insisted he take his medicine resulting in accusations of mistreatment.

“The others are here.” I’d tell myself, bracing for a difficult day. For weeks I watched as his behavior deteriorated. I scheduled appointment after appointment.

“She worries too much. Don’t listen to her.”

The doctor treated the disease the only way he knew how. More medication. It didn’t work. We didn’t know he was hiding it in his cheek and spitting it out.

The others came again and again. Then they stayed. Relentless. Aggressive. Unyielding. He broke. His mind a cyclone of confusion and suspicion.

He arrived at the hospital in the back of police car.

“Why did you wait so long to bring him in?” the admitting doctor asked. “He is in desperate need of treatment,” he added before calling for an orderly to take Rodger to the psychiatric ward.

I’d been telling them that for weeks. I was the one who worried. I was the one they should have listened to. Where they saw only the disease I was living with the illness and he paid the price.
Doctor, please hear me. Listen to the caregivers and heed their concerns. Caregivers see what you do not see. Caregivers hear what you do not hear. Caregivers live with the illness and that is often far more difficult than treating the disease.

Caregivers, do you find it difficult to communicate with your loved one’s doctors?
Do they heed your loved ones when they minimize your concerns?

Have you found a way to communicate with medical personnel that works for you and your loved one? Please share your comments in the space below. I’d love to hear from you and maybe the doctors would too.

Click here for an excellent post on this subject on The Caregiver Space.

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I Hope Rodger is Smiling Today

Yesterday I signed a contract with Open Books Press to publish my book, Confessions of an Imperfect Caregiver, A Daughter-in-Law Tells All. I am thrilled that the story of Rodger and me will be made public. I hope that caregivers everywhere will see a bit of themselves in my imperfections and find some comfort in knowing they are not alone in doing the hardest thing that will ever touch them so deeply or teach them so much.

Confessions of an Imperfect Caregiver – A Daughter-in-law Tells All, depicts my seven-year commitment to caring for my mentally and physically ill father-in-law. In the words of Alexandra Axel, Media Director, The Caregiver Space,  “Your writing is beautiful, your story is compelling, and the problems you present to the reader are complex. … I’m loving it… From the bottom of my heart, thank you for putting your experience on the page. I can’t wait to keep reading.”

 

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“Fine” Is Not An Answer

“How are things going with Rodger?”
“Fine.”

“It must be hard.”
“It’s fine.”

Are you taking care of yourself?”
“I’m fine.”

“How is Mike dealing with all this?”
“He’s fine.”

“Do the two of you get any time away?”
“No, but we’re fine.”

So often when questioned by people, even the most well-meaning, Caregivers say they are fine. It’s time to stop. FINE is not an answer. It’s what we say when the person asking has no real interest in the answer or has already proven that they are too busy, too disconnected, or too frightened to deal with what’s happening.

Saying we are fine when we are not is a social norm that works most of the time. Why bore someone with details of our life when they are busy with their own problems and they only ask about ours to be polite?

How often do we greet friends or acquaintances with the words, “Hello, how are you?” Both parties know full well that we aren’t asking for details and the proper response is, “I’m fine. How are you?”

As a caregiver I was guilty of saying it all the time. When I was so sleep deprived I could barely function I carried on trying to convince everyone, including myself, that I was fine and I’d sleep when the latest crisis had passed. When month after month of stress took a toll and triggered a panic attack, I breathed through it and went on. “I’m fine now,” I’d say once it was over. After a terrible argument with my husband, brought on by the same lack of sleep and buildup of stress, we patched things up and promised not to let it get to us again. We had a solid, loving marriage and we were simply going through a rough patch that would not last forever. We were fine.

Rodger was declining and his need for care was increasing all the time.
Being a caregiver was very hard.
I was not taking care of myself and the stress was taking a big toll on me.
Mike was not fine no matter how hard he tried to pretend he was.
We needed time away and would have given anything for someone to take over even for one day.

I wonder what would have happened if I had responded truthfully.

“How are things going with Rodger?”
“Not good. He is getting weaker all the time. He hates being dependent and it makes him angry. He takes it out on me.”

“It must be hard.”
“It’s very hard. I feel very alone most of the time. I miss spending time with my friends and the people I used to work with.”

“Are you taking care of yourself?
“There’s no time for that. I had to cancel my last three doctor appointments to rush Rodger to the hospital when one of his illnesses worsened. Most days I eat on the run and shower so fast I barely get wet before I have to dry off and tend to his needs.”

“How is Mike dealing with all this?”
“He is doing the best he can to be there for both Rodger and me and go to work every day. On the weekends he does all the shopping and runs all the errands that need to be done. He helps with Rodger in the evenings. There is no rest for him either.”

“Do the two of you get any time away?
“No. We need a rest but we don’t know where to turn for help.”

Would anyone have offered help and a bit of respite if I had not kept reassuring people that I was fine? I will never know. You can find out. If anyone asks how things are going, I hope you remember that fine is not an answer and give them a chance to respond to the truth. I’ll be very interested in learning how it goes.

Note: Caregivers with little or no outside support often suffer from depression. Click here to read an article about caregiver depression at Caregiver.com, Coping with Depression: Signs You Might be in Trouble

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