Sometimes You’ve Just Gotta Dance!

In life, on good days or bad, you just have to either dance away your troubles or boogie in your joys. I say, “Dance, dance, dance!” If you can’t dance, then, “Sing, sing, sing!”

Colors of Happiness

Colors of Happiness

 

Music has played a prominent part in the life of my family. My parents were musicians and singers. I had the privilege during my younger years to learn piano, organ, French horn, trumpet, violin, and guitar. I currently sing in a women’s a cappella chorus, South Florida Jubilee, for fun and relaxation! I recently discovered that singing burns 130 calories an hour.

 

Music helps create and evoke memories that last a lifetime. During one of my visits with Mom, we were sitting in her room at the assisted living facility where she lived after Dad’s death. She was in the middle stages of Alzheimer’s. We were listening to a classical music CD of waltzes. Mom was a classical music lover ever since I can remember. Suddenly, she grabbed my hands, stood up, and started dancing with me around her room, in time to the strains of the waltz. Mom had come alive! It is a precious memory that I will never forget! In fact, I wrote a poem about it in October, 2003, that I would like to share here. It is one of the poems to be printed in my upcoming memoir.

The Spontaneous Dance

 The recorded music began playing.

She held out her arms spontaneously

To take the lead in a magical dance

To Mozart’s “Eine Kleine Nachtmusik.”

 

We tripped the light fantastic,

Laughing, like giddy girls at play,

Spinning, twirling around her room,

Without a care in the world!

 

According to researchers of the Institute for Music and Neurologic Function, “Familiar and likable music has in many instances reduced depression, lessened agitation, increased sociability, movement, and cognitive ability, and decreased problem behaviors.”

My advice, dear friends, is to put aside your worries each day for a few minutes. Find music that “moves” you. Then snap your fingers, tap your toes, and dance away your cares! Even better, sing along as you dance! I guarantee that those few minutes will reduce physical tension and anxiety, and refresh your bank of wellness inside your soul.

Shake It Off, by Karin Beate Nosterud

Shake It Off, by Karin Beate Nosterud

May you find peace, patience, and joy in your caregiving today and everyday!

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To hear Amadeus Mozart’s, “Allegro,” from “Eine Kleine Nachtmusik,” check out this YouTube video of the Les Dissonances string orchestra: https://youtu.be/Qb_jQBgzU-I

 

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To put another smile on your face, listen and watch Paul Simon sing on the “Sesame Street Show” with youngsters dancing: https://youtu.be/G1dlWmrRstc

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Lose your blues to this “Dancing at the Movies” music video: https://youtu.be/uHisd9P2M-Y

No Silver Bullet

Clayton Moore as the Lone Ranger with Silver

“Hi-yo, Silver! Away!,” exclaimed the masked hero, the Lone Ranger, as he rode off on his fiery horse, in a cloud of dust, with Tonto by his side. His trademark, a silver bullet, was left behind as a reminder that good things do happen to those who believe. “The Lone Ranger” was a popular TV show from 1949-1957. I was a fan as a child.

I looked up the meaning of the “silver bullet” symbol. It represents an action which cuts through the complexity of a problem and provides an immediate solution. It is a direct and ultimate fix. References to the use of “silver bullets” date from the late seventeenth century. In the early nineteenth century, the belief was that a silver bullet was the only way to kill evil, supernatural beings, werewolves, witches, the Devil, and other uncanny creatures.

Over 4,000 leading global Alzheimer’s researchers and interested parties from sixty-five countries met in Washington, D.C., July 18-23, for the Alzheimer’s Association International Conference (AAIC). Scientists and participants came to share the latest findings, clinical trials, and new hypotheses about the disease. Unfortunately, their conclusion was that, to date, there are no tests available that can predict the risk of someone getting the disease, or accurately detecting Alzheimer’s in a living person.

Researchers, however, are getting closer to understanding the cause. They are looking specifically at amyloid plaques that build up in the spaces between brain nerve cells (neurons), causing these neurons to die. There was mixed excitement and some scepticism among conference participants about current studies and clinical trials of two experimental drugs: Solanezumab (“sola” for short) and Aducanumab. If used early enough in the disease continuum, these drugs target the plaque buildup. They might also be able to slow declines in cognition, memory and function.

On Wednesday, July 22, The Diane Rehm Show, on National Public Radio, featured an interview with three Alzheimer’s researchers. Doctor Murali Doraiswamy, of Duke University, noted that there is no “silver bullet” yet in terms of an Alzheimer’s cure. More clinical trials are needed before these and other drugs can prove to be effective enough to go to market. He forecasts that it may take three to four more years of further testing. no-silver-bullet

How do these clinical trials impact you and me? Clinical trials need to be ongoing. A projected seventy-six million people worldwide are expected to live with dementia by 2030. Study candidates are needed for the international A4 Study (www.a4study.org). Ten thousand individuals between 65 and 86 years old, in general good health, with no memory loss symptoms, are needed right now for this study. There are research sites in the US, Canada, and Australia. I am seriously thinking about becoming a candidate. My family suspects that our maternal grandmother had the disease. We know for certain that Mom had Alzheimer’s because of her autopsy results. I sometimes wonder if I will be next in the family.

AAIC workshops also explored risk factors, the need for changes in lifestyle, diet, sleep habits, and physical exercise, as well as the prevalence of Alzheimer’s among women and minorities. You and I may need to take a critical look at our own risk factors for getting Alzheimer’s. We may have to “bite the bullet” when it comes to some unhealthy practices in our lifestyles. I will be covering these risk factors in future blogs. Please continue to follow along and share my blog.

What I heard in the news, and have read from the AAIC conference reports give me hope that a silver bullet to knock out and cure Alzheimer’s might just come in my lifetime! Kudos and thanks to all the clinical researchers and volunteers who continue to look for answers to defeat this horrible disease.  Hi-yo, researchers, go for it!

I wish you peace, patience, and courage in your caregiving!

 

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You can listen to Susan Page’s full interview from the Diane Rehm Show here: http://thedianerehmshow.org/shows/2015-07-22/the-latest-on-diagnosing-treating-and-preventing-alzheimers 

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The theme song for “The Lone Ranger” TV show was taken from Gioacchino Rossini’s “March of the Swiss Soldiers,” from the finale to his “William Tell Overture.” You can listen to Andre Rieu direct the Johann Strauss Orchestra here: https://youtu.be/533oFxCtSJo

Shadows, Sundowning, and Full Moons

Shadows Deutsche Fotothek Fotothek_df_roe-neg_0006419_012_Schattenspiel_auf_einer_Treppe

Shadows Deutsche Fotothek

My family listened to a lot of radio when I was growing up pre-television. I’m dating myself when I write that, at about the age of eight, one of my favorite radio dramas was The Shadow. It both frightened and fascinated me!

When the show’s eerie musical theme started, I would hide behind our living room sofa. The voice of actor Frank Readick Jr. mesmerized me. He announced with a spooky laugh, “Who knows what evil lurks in the hearts of men?” I guess at that age I thought the sofa would protect me from the “Shadow” popping out of the radio to grab me!  Each episode would end with, “The weed of crime bears bitter fruit. Crime does not pay…The Shadow knows!”

A child’s imagination is one thing, but shadows, darkness, and perhaps even full moons can pose a problem and cause distress to a loved one with Alzheimer’s or dementia. Seeing shadows in the home, especially when there is poor lighting, and when it is later in the day, can bring on sundowning. Sundowning is a condition that occurs usually in the late afternoon or early evening. The Alzheimer’s Association defines it as “a syndrome characterized by cycles of increased confusion, anxiety, agitation, pacing and disorientation that affects people in moderate to late stages of dementia.” Simply put, as the sun goes down, your loved one may become more confused and irritable. The causes of sundowning are not yet fully understood. There are several theories about what causes it.

Some professionals attribute sundowning to brain fatigue.  Your loved one’s brain has been working extra hard throughout the day to navigate their environment, trying to figure out what to do next. At some point, it may be that the brain has a “melt down.” This can lead to emotional outbursts.

Another theory concerns the presence of high levels of an enzyme in the brain. Researchers at Ohio State are running tests with mice. Their hypothesis is that there is a biological basis to sundowning. They are looking at a certain enzyme, acetylcholinesterase. This is present in high levels when aged mice display distress.

A third theory is that reduced light from the sun in the late afternoon and increased shadows may cause your loved one to misinterpret what they see. They become afraid or confused. Remember, their brains are working and processing information differently from yours.

A fourth theory says sundowning is related to changes or disruptions of the body’s internal clock and the sleep-wake cycle.

Because a person becomes agitated in the late afternoon or early evening doesn’t necessarily mean that they are sundowning. With sundowning, there is usually a pattern of behavior and repetition at the same time of day.

Some persons with dementia display agitation and start pacing. It becomes difficult for them to differentiate reality from past memories. This condition happened to my Mom when she was in the mid-stages of the disease.

I’ll never forget one of my visits to see her at the assisted living facility where she lived. My usual visits with her were in the morning, but that day I came to visit around 4 PM. Mom was pacing anxiously up and down the corridor of the assisted living unit. She didn’t even stop to say hello to me, as I tried to keep up with her. I asked her if we could sit down to visit. She swatted at me, and told me she needed to get home quickly before “…the kids come home from school, or mother will be mad at me.” It took me awhile to realize that she was reliving childhood memories. She was the second oldest daughter in a family of six children. One of her chores was to care for her four younger brothers after school, while her folks worked at their grocery store until supper time. This was the time of day when she would have left high school to attend to her brothers at home.

I told her that she didn’t need to worry, that her mother was still at the grocery store, and the kids had after school activities and so were running late. She called me a liar. I told her we would call her mother to make sure she knew the kids would be safe. Mom gave me a quizzical look at first and then calmed down. I told her we would go to her room to make the call. Once we got there, I tried to distract her by talking about something else. Fortunately, she seemed to have forgotten why we went to her room. I didn’t have to “fake” a phone call. We visited for awhile before it was time for her to go to supper. I walked Mom to her dining area and said goodbye. Since she had calmed down, I felt comfortable ending my visit and leaving her to go home.

Bluemoon Craig Deakin UK_(1)

Bluemoon by Craig Deakin UK

Do you find more intense behaviors in your loved one at the onset of a full moon?  I recently spoke to a dear friend who cared for her mother-in-law who had Alzheimer’s. She told me that whenever there was a full moon, the staff at the nursing home would call in extra help. They knew that during the time leading up to a full moon, behavior in many of their residents with dementia would escalate.

I tried to research this full moon phenomenon. I never really noticed it in my mother’s behavior. I did find mention on Google of a researcher, Alan M. Beck of Purdue University. He conducted a longitudinal study of the influence of the moon on the intensity of behaviors in persons with AD. These behaviors were: wandering, anxiety, physical aggression, and verbal confrontation. His study concluded that persons with Alzheimer’s “…did exhibit significantly more behaviors during periods of full moon,” and the behaviors were of greater duration when the moon was full. I could not discover any more about this study. However, the next full moons in 2015 are: July 31 (a blue moon,) August 29, September 27, October 27, November 25, and December 11.

If your loved one displays dramatic changes in behavior at certain time of the day or month, there are a few things you can do to help cope with the situation and to calm your loved one. These involve experimenting in behavioral ways, as well as finding what in the environment might be causing the agitation.

First, keep a journal marking the time and conditions when this behavior happens. Try to find a pattern to what might be the cause of their behavior.

Second, think about your home. How is the lighting during those times when the sundowning begins? Are the rooms well lit? Putting lights on dimmers may help save electricity, while giving off enough light as the day gets darker. One suggestion I’ve read is to provide exposure to light (artificial or natural) in the early morning hours, from 6 AM to 9 AM. This might help set their “internal clock.”

Third, is this a time of day when activity in your house gets a little more hectic than usual? Are family members coming home from work, or kids returning from school? Is traffic noisier? Try to create a calm environment with fewer distractions. Playing soothing music or nature sounds like waves rolling onto the seashore or birds singing can have a calming effect.

Fourth, try to engage your loved one in a relaxing activity.  It might help to look at photographs, work on something that they enjoy doing, or just take them for a short walk in your garden or yard, if they need to pace back and forth. Put on a DVD of beautiful photos and pictures for them to watch. (I feature a product offered by the AlzStore. It is a DVD called “Ambient Art.” It transforms your TV into an Impressionist art gallery. I have provided a link at the end of this article. The AlzStore also offers two DVD’s of virtual aquariums. One even has the choice of soothing bubbling sound effects or relaxing music in the background.)

Fifth, make sure your loved one is not thirsty or dehydrated, or needs to use the bathroom. They may not be able to ask you for a drink of water, or tell you they have to go to the toilet. Avoid caffeinated drinks after lunch.

Lastly, try to keep a regular daily schedule, as much as possible. If your loved one rests most of the day, they are likely to be restless at night. Plan regular daily exercise and meaningful activities. Try to keep outings and doctor appointments for the morning hours when they are more rested and better able to cope with the changes in surroundings.

If you have discovered something that works for your loved one in regards to sundowning, let me know. Just e-mail me a brief message (Vicki@caregiverfamilies.com). I’d be happy to share suggestions in a future blog.

I wish you peace, patience, and courage in your caregiving journey!

 

RESOURCES on SUNDOWNING

Here are two brief “YouTube” videos about sundowning: One is produced by the UCLA Alzheimer’s and Dementia Care Program: (https://youtu.be/kskiEKghjAE).

The other is a three-minute video produced by the Alzheimer’s Association: (https://youtu.be/Xpq952yjmqk).

RESOURCES on THE SHADOW Radio Drama Series

Just for fun and relaxation, listen to Camille Saint-Saens’ Opus 31, “Omphale’s Spinning Wheel.” When you get about three minutes into the piece, this part was used for the theme of The Shadow radio drama:  (https://youtu.be/96aapx3DFdM)

If you have time, listen to one of The Shadow’s radio dramas, “The Deathhouse Rescue,” (https://youtu.be/3FX-KSzpSF0)

RESOURCE for the Ambient Art Impressionism DVD

Product Code 2098: (http://www.alzstore.com/ambient-art-dvd-p/2098.htm)

Order online or call AlzStore Toll free number: 1-800-752-3238

A Warm Welcome From My Family to Yours

My parents in happier times

My parents in happier times

Dear Family Caregivers,

Today is a special day for me for two reasons. First, it is the ninth death anniversary of my beloved mother, Sophia, or as she liked to be called, Sophie. Second, this is the first day of the launch of my website and blog. Welcome!

The photo you see here is my Mom and Dad dancing the polka at my niece’s wedding in July, 2002. As you can tell, they were really having fun! This is how I like to remember them, enjoying life and each other. At the time, Mom was in the early stages of Alzheimer’s. She had been diagnosed with vascular dementia and Alzheimer’s in 2000.

One of my favorite sayings is, “The love of family is life’s greatest blessing.” I am blessed to have been born into a loving, creative, talented family with two sisters, Carol and Marcia, and two brothers, Frank and Mike. They, along with my husband Felix, provided support to me and our parents when Mom and Dad’s health began to fail. I was privileged to be Mom’s primary caregiver for three years after my father passed away suddenly in 2003.

Alzheimer’s affects the whole family. Responsibilities and relationships within the family will change. Disagreements may arise about the care of your loved one. Just knowing that what is happening to you has happened to others, can sometimes make life easier.

It is my experience that families attempt to care for their loved ones with Alzheimer’s for as long as possible, often at great personal sacrifice. I also know of families where this was not the case, and where the pressures of caring for a loved one created conflicts.

I am now retired, but caring for families was my career as a family life educator, professional counselor, and administrator. In fact, I have a passion for working with families, to support and assist them in a variety of circumstances and life stages. Yet, despite my professional training, at times I was overwhelmed with the responsibilities and challenges of caring for Mom. My family discovered a sense of greater closeness and cooperation as we worked together to care for Mom. It was such an honor to care for my folks in their time of need.

What I have to share with you will not be medical or legal advice. Instead, I will offer practical tips, suggestions, and recommendations for YOUR quality of life as a caregiver. I hope to use what I learned to help make life easier for you in your role. I will be calling on members of my family, as well as professionals in the field, to give you their advice, for what it’s worth. I even hope to use some of your creative ideas to share with other readers from time to time. Once in a while I will challenge you to perhaps try something new.

Please follow this blog over the course of the next few months to see if it can be of help in your role. Just click the “sign up” button and become part of my “extended family.” Send me an e-mail, if you’d like, so that I can keep you in my prayers.
I wish you peace, patience, and courage for the journey ahead!

Blog’s Purpose

For many years of her professional career, Vicki was a certified family life educator and counselor. During a fifteen-year period, she designed and facilitated about a hundred innovative workshops and programs geared to help families and individuals.

With this blog, Vicki establishes another opportunity to affirm families, especially those who care for loved ones diagnosed with Alzheimer’s. Her first-hand experience as a caregiver to her elderly parents will be the base of her sharing. Her goal is to help educate, support, affirm, and encourage caregivers, from those just beginning their caregiving journey, to those further along the way. She hopes her website will help you maintain your health and well-being, as well as avoid caregiving burnout.

Vicki will not send out her blog more than twice a month, some months only once. She believes it is her obligation to provide her audience, YOU, with useful, practical information. If you want to receive it, please sign up on the e-mail list. If you know others who could benefit, please tell your friends and family, forward the blog to them, and share Vicki’s articles on social media.

Communication is a two-way relationship. Vicki welcomes and appreciates your feedback and reactions. She would also love to know what you find helpful in your caregiving experience. You can e-mail her at: Vicki@CaregiverFamilies.com.

Summertime and the Livin’ Is Easy!

Summertime, 1894 by Mary Cassatt

Summertime, 1894 by Mary Cassatt

Dear Family Caregivers,

One of my favorite songs to sing and listen to is “Summertime,” from the 1935 opera, Porgy and Bess, by George and Ira Gershwin. It was one of the songs sung by the Choraliers, a mixed choral group of senior citizens living at Village Green in Vero Beach, Florida. My parents organized and directed this chorus for about fourteen years. Mom was their pianist, and Dad their director.

Many families plan a vacation this time of year, especially since their children and teens are out of school. Is the living “easier” for you this summer? Are you planning a vacation?

We all need a breather at times to refresh our bodies and souls. You, as caregiver, are no exception. You owe it to yourself to have some time off from hands-on caregiving. I was fortunate that my sister from California was able to spend a week or two each year to come to be near my mother. This gave me a chance to get away with my husband for a vacation, sometimes going out of the country. Even though Mom was living in an assisted care facility, I felt so much more relaxed, knowing that she was looked after by a family member who could handle any emergency.

Make a realistic plan to get some respite time-out this summer, just for yourself. Unless you plan, nothing is likely to happen. Reach out to family members or friends to see if they can give you the needed break from the responsibilities of everyday caring for your loved one. Doing so may help you stay healthy. Perhaps a week or two is not feasible, but even a day or two, from time to time, can be the opportunity to relax and do what you like.

You don’t have to go far away from home. Think what would be that “pause that refreshes” you. Would it be a movie and lunch with a close friend? What about a walk in a park, or a swim at a pool or the beach, where you’ve never had a chance to go?  What hobbies did you have in the past that you haven’t done in awhile? Fishing? Golfing? Visiting a museum?

When I was in charge of the program operations at Catholic Charities, I helped administer four adult day centers. I know these types of centers offer “life saving” services for caregivers, especially those who work full-time and need a safe place during the day to bring their family member. Some adult programs now offer evening and weekend services. Look into the option of adult day programs in your area. Your loved one may enjoy the time to go to the “club” one day or more a week. The activities and socialization opportunities these day centers offer can be a boost to keeping your loved one healthier and happier.

Check into nearby assisted living facilities. Some offer twenty-four hour care during a weekend or short-term for persons with dementia. Both adult day programs and licensed facilities may give you a needed break periodically. Contact your local Area Agency on Aging or Alzheimer’s Association for respite services. Check out my “RESOURCES” page to find these links for both organizations.

If you have to remain at home, plan some activities with your loved one that might be different from the ordinary day-to-day schedule, such as planning a picnic lunch outside in your yard, or on your porch or patio. Get a DVD of dance music and have fun with different dance moves. Borrow travel videos from your local library, and fantasize places where you’d like to travel.

You don’t have to feel guilty to take a little time out just for yourself. Remember, the less stressed you are, the less stressed your loved one will be, too. E-mail me (Vicki@CaregiverFamilies.com) and let me know what you do to nurture yourself in the summertime.

I wish you peace, patience, and courage for your caregiving journey!

The Earlier, the Better

Dear Family Caregiver,

Forgetting where one lives, getting lost in traffic, forgetting how to write checks or pay bills — these may be signs of something more serious.

When I was growing up, I used to hear people “joke” that they had Alzheimer’s when they forgot something. As an adult now, I know that Alzheimer’s is NO JOKE or laughing matter. It is a serious neurological disease that leads to cognitive, emotional, and physical decline. Having Alzheimer’s disease is NOT a normal part of aging.

Alzheimer’s is the most common form of dementia, but just one of about eighty-four different kinds of dementia. This disease accounts for sixty to eighty percent of dementia cases. It is also not just a disease of old age. It can appear in people as young as forty or fifty. Scientists tell us that brain changes associated with Alzheimer’s may begin fifteen to twenty or more years before the first symptoms occur, ­even before the person notices a problem.

Financial skills, like writing checks, maintaining bank statements, paying bills, begin to deteriorate in the early stages of Alzheimer’s. The earlier your loved one gets a diagnosis from a professional who specializes in memory disorders, the earlier your family can make interventions. This leads to a better outcome of care for your loved one. It gives you and your loved one time to deal with important planning, like finances and legal matters, durable power of attorney, and his or her wishes for future care. You have time to meet with an elder care attorney, and, if you choose, with a geriatric care manager. You must ensure that you or another family member will have legal authority to act on your loved one’s behalf as their “health care surrogate,” as well as through a properly executed “power of attorney.”

A medical evaluation may also identify other causes for the loss of mental powers that mimic dementia. These other conditions include: alcohol abuse, endocrine imbalance, brain tumors, infection, drug interactions, emotional problems such as depression, and emotional or physical trauma. Unlike Alzheimer’s, some of these conditions may even be cured.

Another good reason to get a diagnosis early on is that the earlier drug therapy can begin, the longer your loved one may retain some memory functions. The Alzheimer’s Association website notes: “Those with Alzheimer’s live an average of eight years after their symptoms become noticeable to others.” Depending on age and other health conditions, people diagnosed with Alzheimer’s can survive from four to twenty years.

In the case of my mother, obvious signs of her memory loss began in 1996, when she was seventy-eight years old. Mom was a master at “covering up” some of the early signs of her illness. In hindsight, we suspect the disease actually began years before. She was experiencing TIA’s (transient ischemic attacks) for about two years before her doctor recommended she get a pacemaker in 1996.  She went to a memory disorder clinic for formal testing in 2000, and lived until 2006. I will detail more about TIA’s, vascular dementia, and what Mom’s testing involved in future blogs.

PLEASE don’t hesitate to get a full memory screening, if you or your loved one show symptoms of memory loss. For more detail what those early symptoms are, check the Alzheimer’s Association website: http://www.alz.org. If you need help in what to say to get your loved one to go for testing, call the Alzheimer’s 24/7 HELPLINE at 1-800-272-3900, and speak to a professional who can coach you.

I was once a caregiver, like you. Your experience is unique to you and your family, but hopefully what I have to offer by way of suggestions may be helpful to you. Send me an e-mail, if you’d like, so that I can keep you in my prayers. I wish you peace, patience, and courage for your caregiving journey ahead!