She Worries Too Much! – When Your Loved One Hides Symptoms

I stopped the car in the handicapped zone in front of the hospital.

“Stay in your seat until I get your walker,” I reminded Rodger when I heard the telltale click signaling the opening of the clasp on his seatbelt.

“I can walk. I don’t need it.”

He hated the walker and frequently “forgot” to use it at home. He was weak and on oxygen from worsening C.O.P.D. (Chronic Obstructive Pulmonary Disease), and on blood thinners after a heart attack.  The combination put him at very high risk for a fall and to make matters worse, the tremors in his hands were increasing in frequency and intensity. The movements of his arms and legs were often stiff.  All signs of Parkinson’s disease.  I had suspected he had it for quite some time.  Months before I had insisted on a consultation with a neurologist even when his primary care doctor didn’t agree with my diagnosis. Neither doctor was thrilled with my persistence. Who was I to think I knew more than his doctors?

“I see no signs of Parkinson’s disease,” the neurologist stated after only a few minutes of observing Rodger. He had him sit and then stand. Next he had him walk across the room and turn around and come back. “Smile,” he said. Not sure to whom he was speaking we both did our best to accommodate him. We both did a very poor job of it.

“If we walk down the hall, wait a few moments, and come back in here he will be shaking and you’ll see what I’m talking about,” I said.

“That may be true but I see nothing now and I have another patient due in five minutes. If the symptoms continue or worsen schedule another appointment and bring him back.”

So there we were, back. The slow shuffling steps  he took while hunched over the walker and the masklike look on his face  were symptoms so prominent I was sure there was no way the doctor could doubt me and he would get the care he needed for this latest insult to his body.

Then it happened. As soon as he entered the hospital his demeanor changed. He took a deep breath and stood as tall and straight as he ever had. His walk morphed from a shuffle to measured steps that were a bit slow but nothing out of the ordinary for an elderly man. He held that posture until we entered the elevator that would take us to the fourth floor. Seeing that we were alone, he dropped the pose and leaned heavily on the walker breathing deeply. He stayed that way as we exited the elevator and passed people walking down the hall, right up until I opened the door and ushered him into the doctor’s office. Once inside he immediately pulled himself upright and the shuffling stopped as he walked to a chair and sat down.

“What brings you here today, Mr. Carducci?” the doctor asked.

How does he do that? How can he morph into a vision of relative health when only moments before he was showing every symptom of a very serious illness? I wondered if the doctor had seen the same sly “gotcha” gleam in his eyes that he cast my way before he spoke, “She worries too much. Don’t listen to her.”

The doctor looked at me, shook his head, and sighed.  I’m sure Rodger thought he’d fooled him again but, after having him go through the same serious of tests and movements he’d done before, the diagnosis was quite different.

“Mr. Carducci, you have Parkinson’s disease.”

Rodger bowed his head and sat silently for a few moments. When he finally looked up and turned toward me the sly gleam had been replaced by a look of sorrow so deep I almost wished he had pulled off his act again. His hand began to shake and he slumped in the chair.

As the doctor and I began to discuss what treatment he would receive and what to expect in the future, I heard Rodger mumble softly.

“She knew it.  She’s the only one who knew it.”

Sometimes being right is a very painful thing.

Does your loved one deny or try to hide symptoms from you and/or the doctor?

For a very interesting and informative article on this type of denial go to: http://www.humandevelopmentmag.org/articles/fa-summer10.pdf and read the piece titled,

“I’m Fine! Fine! Fine! Dealing with Maladaptive Denial by Suzanne Meyer, I.H.M.

For more information about C.O.P.D http://www.copd-support.com/  and http://www.copdfoundation.org/

For more information about Parkinson’s disease: http://www.parkinson.org/ and https://www.michaeljfox.org/understanding-parkinsons/living-with-pd/topic.php?support-groups

As always, I look forward to your comments.

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Protecting Your Loved Ones

Protecting Your Loved Ones

by  Carolina Sewald

Being a caregiver, knowing the type of medication you are giving your loved ones could save their life.

As a caregiver, your prime focus is the safety and wellbeing of your loved one. You are responsible for maintaining their quality of life and keeping them happy and healthy. This may seem pretty obvious but with prescriptions being written for elderly patients for everything under the sun, the safety of the patient may require slightly more attention than you had originally presumed.

Pharmaceutical companies have been producing medications that have saved thousands of lives for years however, some companies have been known to withhold important safety information from its users for the sake of selling more product.

Companies especially target elderly patients as they don’t have much control over the medications they take. They are under the impression that the medication will help them and give them the freedom from their pain that they long for. With the exception of some, whom without this medication would be in much worse condition, there are much safer alternative methods to healing than taking multiple pills several times a day.http://www.drugdangers.com/alternative-health-and-medicine/

Caregivers are responsible for knowing what medication a patient is taking and that they are taking it at the proper times and dosages. More often than not, caregivers do not realize that the medications are potentially harmful to the users. Seniors are often prescribed medications for their body pains, heart conditions, anxiety, and for some, diabetes. A mixture of these can often result in adverse effects that are harmful or deadly for the patients. It is recommended that research is done for every new medication a patient is prescribed to make sure it does not counteract with current medicines.

Medications that have been proven to cause harm to patients include Actonel (risedronate) and Fosamax (alendronic acid) for osteoporosis, Crestor (rosuvastatin) to prevent heart attacks and stroke, Zoloft (sertraline) and Prozac (fluoxetine) for depression, and even Tylenol (acetaminophen) for everyday pains.

With age our bodies start to function less efficiently and therefore processing medications becomes a more difficult task for the body. With longer processing times, the body retains the toxic chemicals of medications within the body for extended periods of time. This means that if a patient has a negative reaction to a medication, it would take longer for them to recover and their body to rid itself of the toxins than, say, a 30 something year old.

Making the call to take responsibility for an aging loved one is by no means an easy decision but in every way an honorable one. In home care saves them from costly nursing homes, it ensures that they are comfortable and safe at all times, and it keeps them happy knowing that they are not alone. With all the tasks that come with this decision, medication safety should be one less worry to have.

Carolina Sewald is a student at the University of Central Florida and is currently an intern for Drug Dangers, a website that works to keep the public informed of dangerous medications and medical devices. She focuses her writing on medial news in hopes of keeping citizens healthy and safe.

Note: The Imperfect Caregiver is not a medical professional. The information provided in this blog post are those of the author, Carolina Sewald, and Drug Dangers. Publication on this blog does not constitute endorsement.

Caregivers making medical decisions and/or administering medications should always consult with the patient’s  physicians when determining the best course of care. Do not discontinue any medication without first discussing  your concerns with the doctors and making sure you understand the possible consequences to the patient.

Two Guest Posts on AgingCare.com

When I received the following from Anne-Maire Botek, Editor-in-Chief of AgingCare.com I was both surprised and thrilled.

“I recently came across The Imperfect Caregiver and was immediately captivated by both your writing style and subject matter. Your posts about your experiences with Rodger echo the sentiments and situations I see discussed on our community forum every day.

The world of caregiving needs to hear your voice; that’s why I would like to offer you the opportunity to become an AgingCare blogger.”

Of course I said yes. The opportunity to reach and possibly help even more caregivers is a gift.  To read my posts on AgingCare.com please click on the links below.

It Don’t Make Sense

A Good Hard Cry

Medicare Changes on Rehab that May Affect Caregivers

I just reived this important information for caregivers from the national Alliance for Caregiving. Learn more about them at www.caregiving.org

Jennifer Rutberg, of the Families and Health Care Project United Hospital Fund, has shared the following information with regard to the case of Jimmo v. Sebelius, which required the Centers for Medicare and Medicaid Services (CMS) to revise portions of its program manuals.

Jennifer explains that it is important for caregivers to know that Medicare has now explicitly stated (as of January 7) that claims for rehabilitation services cannot be denied because a patient has failed to improve. In her words, “Because this Medicare policy is new, it is important for family caregivers to know about it and to be prepared to advocate for an individualized assessment of their family member to gain approval for the necessary skilled services. If necessary, denials can be appealed.”

For more information, please see the following:

• News Article: http://www.nextstepincare.org/uploads/File/newsletter/NewsletterJanuary2014.html

• Center for Medicare Advocacy: http://www.nextstepincare.org/uploads/File/newsletter/NewsletterJanuary2014.html

#Continue the conversation online!
https://twitter.com/NA4Caregiving
http://www.linkedin.com/company/national-alliance-for-caregiving
https://www.facebook.com/pages/National-Alliance-for-Caregiving/189445323158

Caregiver Murder-Suicide on the Rise

The subject of murder-suicide is one I shuddered to even consider writing about. It would be much easier to write another piece, steeped in truth yet clothed in humor, like the one I wrote in November 2013 titled Give a Caregiver a Bath, than to tackle this subject. However if we, the caregivers and our families, don’t become educated about this issue more people will die.

I first wrote about caregiver murder suicide for my local newspaper in September 2007 when it happened to two wonderful people in a town very near where I live. Here is that article:

A Family Tragedy – A Community in Mourning

My deepest sympathies go out to the entire Nichols family in Purcellville, VA. The shocking news of the recent deaths of Edward and Margaret Nichols filled me with deep sadness. Although I never met them, I recently learned enough about these two very special people to realize that the quality of my life was enriched when I became a part of the community they helped to define. I wish that the end of their life together could have come with the same quiet dignity that defined them as they moved through our community.

Shining examples of America’s “Greatest Generation,” they served their country, raised their family, and enriched the lives of those they encountered in the quiet way of truly good people.

The list of their volunteer activities is long, the results sure to be enduring:

Margaret, known to friends as Meg, taught at the Columbia School for the Deaf in Manhattan before marrying Ed and moving to Purcellville. Later she was an active volunteer at the hospital and her church.

Ed spent his life in service to others. He served on active duty in the Navy during World War II. He was a volunteer for the fire department, served on the board of the Robey Foundation, and was a valued and active member in the Purcellville Lion’s Club. He served on the Purcellville Town Council for 20 years, the Planning Commission for 15 years and the Board of Zoning Appeals for five years.

Ed Nichols was a man who lived to help people. How then could he have killed his beloved wife of over 60 years and then taken his own life and how can we take steps to prevent something like this from happening again?

While cases of homicide – suicide among the elderly are rare they seem to be happening more often than ever before.

According to an article written by Donna Cohen, Ph.D., Professor, Department of Aging and Mental Health, Florida Mental Health Institute, University of South Florida:

“Older adults have homicide – suicide rates that are twice as high as younger adults. Each year more than 500 homicide-suicides or 1,000 deaths occur in persons 55 years and older, which means that nearly 20 older Americans die each week in a homicide suicide.”

I find those statistics shocking and I fear that others in our community are in danger.

Men are most often the perpetrators of homicide –suicides in older couples and frequently his motives are more altruistic than malicious. If a couple has been married for a long time and they are very dependent on one another the man can fear losing control when his health or that of his wife is changing. Even if the woman is not sick, a real or perceived change in the man’s health coupled with depression can precipitate the act.

About half of all homicide –suicides are the result of this type of situation and are called Dependent – Protective Homicide –Suicides.

It has been reported that Mrs. Nichols was in the later stages of Alzheimer’s disease and also had Parkinson’s disease and that Mr. Nichols was losing his vision and had hearing problems. It appears that Mr. Nichol’s last act was one of deep devotion coupled with an overwhelming sense of desperation. If only we had known we could have helped him as he helped so many others during his lifetime.

Clues to Look For
There are common clues to a possible homicide-suicide that must be taken seriously. Knowing and acting on these clues may help you save lives.

• The older couple has been married a long time and the husband has a dominant personality.
• The husband is a caregiver and the wife has Alzheimer’s disease or a related disorder.
• One or both have multiple medical problems, and the health status of one or both are changing
• A move to a nursing home or assisted living facility is pending or under discussion.
• The older couple is becoming more socially isolated, withdrawing from family, friends and social activities.
• The older couple has been arguing or there is talk of divorce or a history of estrangement.
• Since the husband is usually the perpetrator, look for the following signs.
o changes in eating or sleeping
o crying for no apparent reason
o inability to feel good about the future
o talk of feeling helpless or hopeless
o talk that the future is bleak
o talk that there is nothing they can do
o threats to harm the wife
o loss of interest in activities that used to give pleasure
o anxiety and agitation
o giving things away that are important to them
o making plans to give someone a key to the home

If your spouse is showing these changes, or if you are an adult child or relative and you see these changes in a parent, talk to them. Do not ignore these signs.

What to Do if You See Signs

  • Do not be afraid to ask if the older person has thought about suicide or homicide-suicide. You will not be giving them new ideas.
  • Do not act surprised or shocked. This will make them withdraw from you. Continue talking and ask how you can help.
  • Offer hope that alternatives are available. Do not offer glib reassurance. It may make the person believe that you do not understand.
  • Get involved. Become available. Show interest and support. If you cannot do this, find someone who can, such as a neighbor or a minister, priest, or rabbi.
  • Ask whether there are guns in the house. Ask the person what plans they have to die. The more detailed the plan, the higher the risk.
  • Remove guns and other methods to kill.
  • Do not be sworn to secrecy. Get help from persons or agencies that specialize in crisis intervention.
  • Call a crisis hotline in your area or seek the help of a geriatric specialist. Do not try to do things by yourself.

Finding Help:

There is help in the community. If you believe there is a risk for homicide-suicide, contact a professional immediately. Call a suicide crisis center, a crisis hotline, a family physician, a psychiatric or medical emergency room, or a community mental health center listed in the yellow pages of your phone book.

Related stories:

http://www.washingtonpost.com/wp-dyn/content/article/2007/09/24/AR2007092401250.html
http://www.webmd.com/depression/features/murder-suicides-in-elderly-rise
http://www.washingtonpost.com/blogs/she-the-people/wp/2013/01/26/murder-suicide-disturbing-trend-among-the-elderly/

Caregiver Communication Struggles?! Guest Post by Barbara Worthington

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Caregiver Communication Struggles?!
Here’s a Tip. Don’t Be a Marlin

Communication cycle for blog post

I love spending time with my family! One of our favorite activities is sitting down on the couch, eating some popcorn and enjoying a movie. The top played movie in our house is Pixar’s “Finding Nemo“, which, for the record, I’ve now seen 837 times! 🙂

You would think I get tired of it. You’d be right and wrong.
Every time I watch it, I resonate with Marlin! And not just for the obvious reasons, he’s funny and ends up being heroic. It’s because he reminds me of how I used to be as a caregiver!
Yup, that’s right. I WAS A MARLIN! I WAS AN IMPERFECT CAREGIVER!
Still confused? I’ll explain.

In the film, Marlin is a single dad to his son, Nemo. Nemo is born with a handicap to his fin. Nemo ends up being captured by divers, and it’s up to Marlin to rescue his son. Along the way, the only fish to befriend Marlin is Dory, a fish that suffers from short-term memory loss.
Marlin, like many of us caregivers, struggles with “being in control”. He’s used to doing things his way, or what he would consider “normal”. Throughout the journey to find his son, he is often met with stressful situations that cause his emotions to come unraveled.

During these moments, he reacts out of a fear of loss of control saying things like, “Look, you’re really cute, but I can’t understand what you’re saying”, or my favorite “You think you can do these things, but you just can’t, Nemo!” It’s not until he learns to trust and believe in the abilities of his friends and family around him (disabilities included), that he finally let’s go, and enjoys the journey.

I may be the only person on the planet, that while watching Finding Nemo, each and every time, look at it and see my life as an Alzheimer’s and dementia caregiver to my grandparents, and as a mother to a daughter who has Autism.

In particular, I recall trying to control communication. You see, I, like Marlin, was used to my style of communication, a “typical” verbal communication cycle. Communication is usually a shared responsibility. A normal communication cycle involves someone speaking (or sending information), the other person(s) hearing and processing what is being said, and then an response is given.

However, in dealing with persons living with Alzheimer’s or related dementia, this verbal communication is often difficult, if not impossible (and is sometimes difficult for persons living with Autism as well). Alzheimer’s disease gradually diminishes a persons ability to communicate.

Changes to communication include using familiar words repeatedly, inventing new words to describe familiar objects, forgetting what was being said, speaking less often, to name a few. Read more from the Alzheimer’s Association.

I didn’t understand all of this at the time. I certainly didn’t know any other techniques to try. My lack of education and knowledge about how to communicate better with persons living with dementia, only led to mounting frustration which turned into depression, lack of motivation, in short, burnout (and this was with my grandparents whom I LOVED dearly and affectionately!)
I had to learn how to live in the person with dementia’s world, not have them try to live in mine!

My biggest breakthrough came in adjusting my style of communicating. I learned to speak calmly, get at their eye level, speak in short sentences (focusing on one idea at a time), only ask one question at a time, never argue (unless safety was a risk), and reduce the thinking to get the message across to name a few tips I learned.

The later tip (reduce the thinking), is what led to my trying visual tools for communication. I wasn’t used to visual communication; I’ve always been the chatty type. Verbal worked for me. But clearly, it wasn’t going to continue that way while caring for my grandparents, who had Alzheimer’s disease.

I learned that in persons living with Alzheimer’s and dementia visual communication is retained easier. Why? Because, visual processing is less taxing on the brain, and we need to “reduce the thinking to get the message across”.

Also, visual communication usually involves reading of prompt or cue words, and persons living with dementia can still read. Yes, its’ true! Why? Because reading is a automatic habit, known as automaticity. So, if our loved one with dementia was literate as a child, they should still be able to read well into the disease process.

Understanding these concepts helped me to be a better caregiver. It allowed me to focus on what can be done, versus hat can’t; working with what you have not dwelling on what is lost. It’s positive, person-centered care! How awesome!

I was able to create many illustrations for the use of communicating easier with persons living with Alzheimer’s and dementia, known as Caregiver Cards. Caregiver Cards are visual communication. It is a series of 155 cue cards that caregivers use to help communicate, orient, cue or reduce anxiety and related behaviors in persons living with Alzheimer’s, related dementia, or other memory or speech disorders. Caregiver Cards address emotions and behaviors, activities of daily living, instrumental activities of daily living, commands, prompts, people, places and events.

I have used Caregiver Cards many times to help bridge that gap in communication, to help work with their abilities and be in their world.

One fond example I like to share is with my interacting with a wonderful woman who has regressed, in her Alzheimer’s, to her native, non-English tongue. She is sitting next to me chatting in Portuguese, and starting to get escalated because I 1. don’t know Portuguese, and 2. am not responding immediately to her. I paid attention to her body language and understood she was interested in my face area. I went through my set of Caregiver Cards, eventually coming to the “hearing aid” illustration. I directed her eyes and attention to the illustrated card and said, “You see my hearing aids?” (I wear two hearing aids). She immediately responded IN ENGLISH, “Yes! Hearing aids”, promptly wrote out the word hearing aid on paper, and then went right back to speaking Portuguese.

But, she was calmer!! We made a connection. She understood that I understood her! It was amazing!
It’s all of these experiences that have helped shape me into the person I am today. I am a dementia champion! I am no longer the scared and controlling Marlin! I hope the same applies to you.

Feel free to contact Barbara Worthington, Founder and Owener of Caregiver Cards, about questions you may have regarding caring for persons living with dementia or Alzheimer’s. If Caregiver Cards seems like a good tool for your caregiving needs, please visit and order at http://www.caregivercards.biz or find them on Amazon.

And The Winner Is – Mary Rose McHenry

Mary Rose McHenry of Pittsburgh, PA is the winner of the drawing open to those who signed up to follow The Imperfect Caregiver during the month of December 2013.

Mary Rose will receive a signed copy of Hello God, Are You There by Vickie Fisher.
HelloGod

When informed that she is the winner Mary Rose had this to say, “Thanks so much. It couldn’t come at a better time. The week before Christmas, my mother became ill so once again I become more of a caregiver.”

I thank all my followers and the millions of other caregivers for all you do for  your loved ones.  Your responses are always welcome. If there is a topic you would like to see addressed in the blog, drop me a note in the comments section and I will do my best to highlight it.

I am sending a special thanks to Vickie Fisher for her generosity, allowing me to offer her book  to one of my new followers.  Read more about Vickie  and her books on her website http://vickiefisher.com/

Sundown In The Land Of Caregiving

Sunset_on_the_Innoko

Sundown is of a time of inspiration for artists and a frequent backdrop for vacation photos and romantic interludes. For caregivers and their loved ones the incredible beauty of a sunset is often overshadowed by confusion, distrust, and escalating stress.

Even before I had a chance to knock on his sitting room door I heard Rodger’s voice.

“You better not try anything funny. I know how to defend myself!”

As startling as his words were they didn’t stop me from putting a smile on my face and slowly entering the room. It was the sight of him in a boxer’s stance with his fists raised that sent a shiver of dread rippling down my spine and stopped me in my tracks.

“I’m not a very funny person, you don’t need to worry about that,” I said, hoping my little joke would diffuse the suspicion and anxiety he was expressing.

“I’ll call the cops if you get any closer!”

“Okay, I’ll stay right where I am. You can put your fists down. I’m not going to try anything. I’m getting ready to fix your dinner. I came up to make sure you were awake before bringing it to you. I’ll go back downstairs and you can relax until it’s ready.”

“Relax, relax. All you say is relax. I don’t have to relax.” He sounded like a three-year old getting ready to throw a tantrum. However, adults in tantrum mode can be dangerous. He was sundowning and it was time to put some distance between us.

His doctor talked with me about sundowning when he confirmed the diagnosis of dementia so I wasn’t completely surprised when it began to happen. It was still very disconcerting when it occurred. At first it happened only occasionally, and then it began to happen more and more often. I never knew what set him off. What I had learned was that confronting him with facts didn’t help. It made things worse. I finally realized that the best thing to do was remain calm and meet him wherever he was. Sometimes I was able to do it. Sometimes I couldn’t. On this particular day I was handling it pretty well. Not great but not bad either.

“I’m going downstairs now. If you need anything let me know.”

“Food. I need food. Are you going to feed me today?”

So the mention of dinner got through. That was a good sign.

“I’ll bring you something to eat in a few minutes. It’s almost ready. I hope you like it.”

“I eat anything. If you get hungry enough you eat shit. Are you going to feed me today?”

“Yes. I’m going to feed you today.” I backed out of the room and went to the kitchen to prepare something I hoped he would think tasted better than what he had mentioned.

Two hours later, after he had eaten everything on his plate with no comment about the flavor, I was sitting down to supper with my husband when Rodger opened his door and called to me, “Hey, you going to feed me today?”

I pushed my plate away and rose from the table.

“Are you hungry?” I asked

“No, but I have to eat sometime. “

I hurried upstairs with a snack I kept ready in case it was needed. He was waiting for me, fists up, in the boxer stance again.

“You better not try anything funny. I’ll call the cops.”

By the time I got him settled again I had lost my appetite. I went to my room and changed into my pajamas even though it was barely 7:00 PM. I was sitting on the side of my bed wondering how long it would be before Rodger popped out of his room again when my husband called to me from the kitchen.

“Hey Babe, come back down here. You have to eat sometime.”

With a heavy heart I slowly descended stairs, walked to the table, sat down, and began to eat. Everything had gone cold. I won’t say what it tasted like but Rodger would know.

If you’re hungry enough you’ll eat anything.

According to Mayo Clinic Neuropsychologist, Glenn Smith, Ph.D. the term “sundowning” refers to a state of confusion at the end of the day and into the night. Sundowning isn’t a disease, but a symptom that often occurs in people with dementia, such as Alzheimer’s disease. The cause isn’t known.

For more information from Dr. Smith go http://www.mayoclinic.com/health/sundowning/HQ01463

What steps do you take when your loved one is experiencing the late day confusion and restlessness known as sundowning?