Caregiver Families

Worrying vs. Caring

I recently traveled to Guatemala. At the end of one of our excursions, our tour guide handed each of us a goodbye gift. It was a small handcrafted pouch of “worry dolls.” He explained the legend surrounding this custom.

Worrydollcraft as featured on Etsy

Worrydollcraft as featured on Etsy

Many generations ago, the indigenous people from the Guatemalan highlands created these dolls as a remedy for worrying. Before going to sleep at night, a person would tell their worry to as many dolls as necessary. Then they would place these tiny dolls in a cloth pouch and put it under their pillow. The dolls take over worrying so that the person can then sleep peacefully through the night. In the morning the person awakens without the worries that the dolls took away.

There is a Swedish proverb: “Worry often gives a small thing a big shadow.” I used to be a “worry wart” in my teen years and early adulthood. My worries usually came from anticipating the worst that could happen regarding a situation. This was the stressful part – anticipation – and usually the worst never came about. Worry was really a drain on my body and spirit. The process of maturing taught me that worries don’t change the outcome of things.  As Corrie ten Boom wrote, “Worry does not empty tomorrow of its sorrow. It empties today of its strength.”

One of my consistent worries while caring for my mother was what would happen to her if she were taken alone by ambulance from her assisted living facility to the hospital while I was at work. I describe this in my memoir, Elegy for Mom. This actually happened on several occasions. My worry was that she would not be able to describe what was wrong or the location of her pain. Consequently, the doctors wouldn’t know what to do to begin treatment. Each of those times when I arrived at the emergency room, Mom appeared calm. She seemed to know she was in a hospital. I was the frightened one – not Mom! I later found out that the nurse at Mom’s assisted living facility had given the medics a file folder containing all her health issues and medications to take along with Mom in the ambulance.

When you care for a loved one with dementia, I don’t believe you can ever be completely “worry-free.” There will be times when you will worry. You may even feel by worrying that you are doing something “useful.” Perhaps you are underestimating your ability to cope with the challenges of caring for a person with dementia. Worry can take a toll on your sleep, tax your immune system, drain your mental and physical energy, send your anxiety levels soaring, and turn into a cycle of self-perpetuating negative thinking.

Sometimes worry can be a good thing. For example, if there is an actual threat, it may spur you to take action or solve a problem. However, if you find yourself starting to become overwhelmed with worry, here are a few questions to ask yourself:

  • Is your worry productive or unproductive? Will it help you or hurt you?
  • Does worry limit you and cause you to panic or freeze from thinking clearly?
  • How much does worry interfere with your life?
  • Is the problem solvable rather than an imaginary “what if?”
Image courtesy of Stuart Miles

Image courtesy of Stuart Miles

Negative moods, like guilt and shame, even physical states like pain, tiredness, or fatigue can fuel worrying. Worry hinders rather than facilitates effective problem solving. It is not an alternative to coming up with practical ways to tackle a problem. Try these suggestions to resolve the matter:

  1. Talk about your worry to a close friend or family member. Getting it out often helps make it easier to see the real issue for what it is. A trusted family member or friend may help you find a more useful and practical perspective.
  2. Write it out. Make a worry list and then order them. Jot down what triggered the worry. What is the worst that can happen? You may start to see patterns.
  3. What is one small step you can take to start improving the situation? Can you come up with a Plan A, Plan B, or even a Plan C, if needed?
  4. Learn more about the issue. Perhaps reading about the disease, or discussing health issues with a doctor can ease your mind so that you have an idea if the situation is to be expected as part of the disease progression.
  5. Try to lift your mood if you begin to feel that worry is zapping you further. What can you do to make your life more pleasant?
  6. What early messages did you get about your capabilities? Give up the belief that worry will be the solution to the problem.
  7. Before your worries begin to overwhelm you, seek professional help.

Caregivers need all the physical, mental, and creative energies that they can muster. Save your energy for productive things, and try not to let worry drain you. Give yourself credit for challenges that you have overcome in the past. Have confidence in your ability to deal with the challenges that await you.

Get a good rest each evening in the knowledge that you did the best you could that day as a caregiver and you won’t need those worry dolls. Poet Ralph Waldo Emerson has these words of wisdom:

“Finish each day and be done with it,

you have done what you could.

Some blunders and absurdities no doubt crept in.

Forget them as soon as you can.

Tomorrow is a new day,

you shall begin it well and serenely.”

I wish you peace, patience, serenity, and joy in your caregiving today and every day!

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The Center for Clinical Interventions in Perth, Australia, has an educational module about “What? Me Worry?,”  an excellent detailed overview about worrying. Check it out here: http://www.cci.health.wa.gov.au/docs/GAD_2_2015_Worry.pdf.

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I composed a prayer based on a line from Psalm 40, to help alleviate worries. Check it out on the “Resource” section of my website: https://caregiverfamilies.com/inspiration/.

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Alzheimer’s and the Senses Part Five: Touch

“To touch can be to give life,” said Renaissance painter, sculptor, architect and poet Michelangelo. I was privileged in 2014 to visit the Sistine Chapel in Rome and view Michelangelo’s fresco painting of “The Creation of Adam.” You may have seen this classic painting of God’s near-touching finger reaching out to bring “life” to Adam.

The scene is unforgettable! I wonder if Michelangelo knew that touch is the first sense developed by the body.

Michelangelo's "Creation of Adam"

Michelangelo’s “Creation of Adam”

Our sense of touch is a basic human need, a lifeline that can communicate love, safety, care, reassurance, and trust. Touch is not an emotion, but emotions are formed through the physical, psychological and spiritual effects that we experience through this unique sense. Persons with Alzheimer’s or other forms of dementia do not lose their capacity for human emotion or their recognition of a caring touch.

Compared to our scientific knowledge of the other senses, our understanding of the sense of touch, and in particular how it is processed in the brain, is limited. According to neurobiologist Dr. David Linden, “genes, cells and neural circuits involved in the sense of touch have been crucial to creating our unique human experience.” Yet, writes Dr. Linden, the body’s touch circuits are “a weird, complex and often counterintuitive system.”

How the Brain Processes Touch

Our sense of touch does not have a specific place on the body where it is located, for it is found all over the body in our skin. Our skin is the largest organ in the somatic sensory system. The somatic sensory system has nerve endings and receptors that help us feel when something comes into contact with our skin.

Chart of skin

Chart of skin

When the touch, pain or heat sensors in our skin are stimulated, they send electrical impulses to our neurons. The neurons then act as a relay team, passing the electrical pulse from neuron to neuron until it reaches our spinal cord. Our spinal cord then takes the signal and sends it to our brain to translate it.

Neuroscientists have discovered that there are two distinct but parallel pathways in the brain for processing “touch” information. The first pathway is in the region of the brain called the primary somatosensory cortex. This is the region that analyzes and processes information about the “facts” of a touch, such as vibration, pressure, texture, temperature and location.

The second pathway processes social and emotional information and activates brain regions associated with social bonding and our pleasure and pain centers.

Aging and Touch

Humans crave touch. Just as babies thrive and respond to being held, as we age our need for touch remains. Unfortunately, our sense of touch steadily deteriorates as we get older. Every year, starting at around age eighteen, we lose about one percent of our tactile sense. Some researchers explain that this could be the reason elderly people are so prone to falls – they get less tactile information from the soles of their feet when wearing shoes.

The Physical and Emotional Benefits of Touch

Research studies document physical and emotional health benefits of using “touch” in caring for a person with dementia. The physical benefits include:

  • Lowering of blood pressure
  • A decrease in pain
  • An improvement in mood
  • A decrease in stress-related cortisol
  • A decrease in heart rate
  • An increase in sensory awareness.

As to the emotional benefits, touch can communicate multiple positive emotions such as love, safety, care, reassurance, trust.  Hugs, holding hands, a caress, or other physical gestures of affection can ease your loved one’s mind, help them feel less isolated, decrease their anxiety. Studies have shown that a person giving a hug gets just as much benefit as the person being hugged. For a person with Alzheimer’s, compassionate touch is a language of the human heart.

How You Can Help

1.  Active Tactile Stimulation

The brain “feels,” so tactile stimuli is brain stimulation. The most sensitive parts of our body and those with the most nerve endings are our fingertips and mouth. Each of our fingertips has about 3,000 nerve receptors.

A person with dementia naturally gravitates toward tactile stimulation when they explore the fabric of their clothing or the smoothness of an object in front of them. Every solid object has texture, temperature, and shape. They can benefit from activities that involve handling a variety of objects to experience texture. These could include: squeezable balls, sensory “blankets,” activity muffs, finger painting, “clay” work with Play-Doh.

Go for a walk in a garden or woods and let your loved one touch leaves, tree bark, and flowers. Bring the feel of the outdoors inside by filling a tray or basket with similar objects like shells and coral to replicate the seashore, or acorns, pine cones, and various branches.

Incorporate “touch” into their daily routine, like folding warm laundry, sweeping the floor, arranging flowers in a vase, drying dishes, brushing a dog’s fur coat, knitting or crocheting.

2. Passive Tactile Stimulation

My Mom always seemed to want a handkerchief in her hand. She told me it gave her a feeling of reassurance. She also enjoyed carrying around a small purse that had a few items tucked in it like a comb and coin purse.

One of the ways I found to calm and comfort Mom when I visited her in the assisted living facility was to give her a weekly manicure. A pedicure and combing/brushing hair are other forms of passive tactile stimulation.

Giving a hand, foot, neck, or upper back massage is also a way to connect and communicate. Make sure your loved one gives you permission to do so. Do not surprise them. hands-holding-togetherUse a little massage oil like lavender or lemon balm to add to the sensory experience.

When temperatures change in the fall and winter months, make sure your loved one is kept warm both inside and outdoors. They may not be able to tell you when they are hot or cold. Sitting wrapped in a soft blanket can provide comfort and warmth to an anxious person. Cover sofas or an armchair with fake fur or sheepskin.

3. Pain

Be on the alert to pain in your loved one at all stages of the disease. Pain often goes undetected, under-recognized, and under-treated in persons with dementia. Most studies suggest that the experience of pain is elevated in persons with mild to moderate Alzheimer’s disease. However, pain sensitivity in the late stages is unclear, according to Sciencedaily.com.

Beside facial expressions like grimacing or frowning, some signs that your loved one is in pain include: guarding, bracing, moaning, sighing, aggressive behavior.

The bathroom and kitchen are places where scalding and burns happen. Adjust the water heater to 120 degrees Fahrenheit, and/or install anti-scald devices for water taps. Check into automatic shut-off devices for stoves and ovens. Unplug appliances when not in use.

Michelangelo symbolized the power of touch in his magnificent painting of the act of creation.  Create opportunities each day to “give life” to your loved one. The sense of touch is truly fundamental to human communication, bonding and health.

I wish you peace, joy, courage, and patience in your caregiving today and every day!

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Read more about touch and the elderly at: http://www.comfortkeepers.com/home/info-center/senior-care/the-power-of-touch-and-what-it-means-for-the-elder#sthash.f1NaePg5.dpuf.

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Dacher Keltner, UC Berkeley psychology professor and faculty director at the Greater Good Science Center, shares insights into touch therapies in this eight-minute YouTube video: https://youtu.be/GW5p8xOVwRo.

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The Alzheimer’s Association of Australia has a “Help Sheet on Pain.” You can find it here:

https://www.fightdementia.org.au/files/helpsheets/Helpsheet-CaringForSomeone11-Pain_english.pdf.

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For easy directions about giving a hand massage, check out: http://www.wikihow.com/Massage-Someone’s-Hand.

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End-of-Life Decisions and Care

Let’s begin at the end. What do most of us wish for at the end of our lives? Dignity? Comfort? Respect? Love? These are the things I want for myself and my loved ones. If caring for my mother taught me anything, it was to be as prepared as possible for when that time came for her. november-luminous-sky-1107952_640

My experience with death in our family has been very limited. Neither I nor my siblings were present when my father passed away in the hospital in the early morning hours. Fortunately, I was present when Mom drew her last breath while she lay in a coma in a local hospital’s emergency room ten years ago. It was a peaceful passing!

I asked a friend of mine, Fr. Thomas Schroer, S.M., Ph.D., to share his thoughts and experiences with death and the dying. Fr. Tom’s mother was attended by hospice staff while in a nursing facility. He also has accompanied several dying individuals in their last hours. Fr. Tom shared   that it is important to have well-trained and caring professionals assisting families at the crisis time of a loved one’s impending death. It’s an exhausting emotional roller-coaster ride. Family members are bound to experience a range of emotions, even conflicting ones, when caring for a dying individual. In such a situation, caregivers are in need of support, as well as the dying person. “I remember so well the relief I experienced when hospice care providers arrived to assist my family during my mother’s last days,” writes Fr. Tom. “The healthcare professionals were committed to making her as comfortable as possible. We could now focus completely on supporting one another and my mother with the confidence that she was in good hands.”

Fr. Tom highly recommends reading the book, Final Gifts, by Maggie Callanan and Patricia Kelly, two hospice nurses. “As nurses for the dying,” write these two authors, “we see ourselves as the counterparts of birthing coaches or midwives, who assist in bringing life from the womb into the world. At the other end of life, we help to ease the transition from life through death to whatever exists beyond.”  As family caregivers, we increase the probability of the dying process taking place in the most lovable and caring manner possible, if we are able to envision the dying process as a “second birthing process.”

Since you want the best care possible for your loved one, a hospice provider can assist you in making that vision a reality, even in the familiar surroundings of one’s own home, if that is preferred. Health insurance will usually cover the expenses. It is important to check out in advance the reputations of the hospice providers in your vicinity. Fr. Tom notes that not all organizations are equal in terms of their professional excellence and care.

Death is part of everyone’s life cycle. However, it is rarely a topic for serious family conversation until a crisis. My family was so fortunate. Our parents took the initiative early in their retirement years to meet with a family lawyer to draft all the necessary papers for wills and advanced directives. They prepaid for plots at their local cemetery. My oldest sister was designated executor of their wills, while I was made their health-care surrogate. Following Mom’s diagnosis of Alzheimer’s and vascular dementia, I arranged for our parents to meet with a geriatric care manager/financial planner. My parents discussed these plans with all the family members. Dad kept all their important papers in a portable metal file case, with copies at the lawyer’s office. This made it easy for us to know where to look if anything happened to either one of them.

nov-writing-1149962_640Legal advanced planning is the best plan to have. This ensures the decisions you and your loved one wish will be honored without the expense, delay, or loss of legal rights that can go along with the court appointment of a guardian. If someone dies without a will, their estate goes into probate. The probate court then uses the laws of the state to decide who inherits what. If you already have formal documents in place, take a few minutes to review them now, in case they need updating.

My recommendations to caregivers include:

  1. Start the conversation with your loved one while they are still able to tell you what kind of end-of-life treatment they would accept or not accept. “The Conversation Project” offers a free starter kit online to help family members begin these discussions. (See resources below.)
  2. How would you/they want to be remembered? What matters most to you/them?
  3. What level of medical interventions do you/they want? CPR? Feeding Tube? Artificial nutrition? Pain control?
  4. Make sure end-of-life wishes are honored, not only with a living will or advanced directive, but also a POLST (Physician Orders for Life Sustaining Treatment). The POLST is a medical form that is legally recognized in many It spells out end-of-life treatments that you want or don’t want. Medical personnel, especially EMT’s who come by ambulance in a crisis MUST follow the instructions on a POLST. (See resources below.)
  5. Designate a health care surrogate for yourself and your loved one, as well as a person you trust who can serve as your agent with durable power of attorney. Consult with an attorney before making or revoking a Durable Power of Attorney.
  6. Look into what your local hospice services may have to offer if and when it comes time. If you think your loved one is nearing that time, discuss this with your family doctor. You can request an evaluation by a hospice organization yourself, but the formal request for services will usually have to come with a physician’s request.
  7. What type of spiritual practices and memorial traditions would you/they want?

Endings are extremely important and deserve our loving attention to details. Maggie Callanan notes, “Our dying is the ultimate signature on our life’s story.” Talking with family and friends, consulting with health and legal professionals, bereavement experts, and spiritual advisors can help you work through the grief and loss issues you will inevitably face. Knowing you have done all you can as a caregiver to be prepared will help you get on with life and loving and making wonderful memories in the current phase of your loved one’s life journey.

I wish you peace, patience, and joy in your caregiving today and every day!

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Many thanks to Fr. Thomas Schroer for taking time out of his busy schedule to share his thoughts about end-of-life care!

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The Conversation Project is a nonprofit organization devoted to helping families have conversations about end-of-life wishes. Their website is: http://theconversationproject.org.

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The National POLST Paradigm is a website that provides information about Physical Orders for Life-Sustaining Treatment: http://polst.org.

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Here is an interview with hospice worker Maggie Callanan, one of the authors of Final Giftshttps://youtu.be/kojj-OrS5Jk.

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Dr Jennifer Bute has released a series of short videos discussing dementia issues from her inside perspective as a person diagnosed with early onset dementia. Watch her seven-minute video about end-of-life issues: http://gloriousopportunity.org/dementia-issues.php.

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The Alzheimer’s Association has information to help with end-of-life planning at their website: http://www.alz.org/care/alzheimers-dementia-planning-ahead.asp#ixzz2lDd6TML2.

 

Smell, the Most Powerful Memory Trigger

Of our five senses, I believe the sense of smell is underrated and underappreciated. It has the power to evoke memories, imagination, old sentiments, and associations, some good, some not so good. Odors can cause our hearts to beat joyously, or contract with remembered grief and pain.

Relaxing in a lavender patch

Relaxing in a lavender patch

The sense of smell diminishes as we age. Persons in the early stages of Alzheimer’s disease may have subtle problems identifying odors. In fact, as I reported in an earlier blog article, a deteriorating sense of smell may even precede the onset of memory problems, and be a predictor of changes in the brain. We often think of Alzheimer’s as a disease of “memory for words and pictures.” However, it may also be a disease of “memory for sensory information” as well.

The focus of this article is to provide an opportunity to reflect, as family caregivers, on our amazing sense of smell. My mentor and friend, Merle Stern, composed the meditation below. As we pause to appreciate this powerful sense, we will come to a deeper awareness and better understanding of the need for compassion when our loved ones lose this unique sense. Hopefully, it will also help you feel more centered, particularly if it has been a tough day as a caregiver.

Merle shared with me that she remembers her mother telling her that when she went off to university, she was greatly missed. To soothe the void, her mother refrained from laundering Merle’s bed linen so that she could crawl occasionally into Merle’s bed and absorb the smell. Her mother found it soothing and comforting. Years later, when handed a crying baby, Merle took a page from her “mother’s book.”  She took a coat or sweater of the baby’s mother, placed it in her arms, and then took the baby who snuggled up, contented and happy, comforted by the smell of its mother.

With these thoughts in mind, please take a few minutes to find a quiet place and a comfortable position so that you can enter into this meditation without distraction.

Let yourself drift in time and space to a scent that ignites memories you wish to recall. The scent might be that of a person or a place (like a kitchen with a wood burning stove where everyone congregated around the table to share stories.) The scent might be from an object, such as a cup of freshly brewed morning coffee, your favorite perfume that you received as a gift from a loved one, or a special flower that grew in your family’s garden.

Breathe deeply with your eyes open. Imagine fusing yourself with the smell so that it is an extension of you and you are an extension of it. With each breath you inhale as you absorb the scent, you become an extension of it. When you exhale, the scent becomes an extension of you. You become the scent; the scent is your breath. You are recognized by this scent. It is in your pores, your body cells, in your blood, in your being.

Now gently close your eyes. Visualize in your mind’s eye the form your scent has taken. How do you see it? What is the color? Is there a luminous quality? What is the shape? Reach out and touch it, making contact with its shape and texture. It exudes an odor different from the one you chose. As you absorb its color, its luminous quality, its shape, texture, and smell, visualize this new form it now takes within you.

october-22-cup-of-coffee-photo-montage-488177_1280It emerges like a symphony and you can hear music playing, created from all the smells you love such as: chocolate, freshly baked homemade bread, lilacs, lavender, apples, coffee. This symphony of smells breathes new life into you. You revel in the radiance of the smell. You feel your body nourished by it. You wake up in the morning to this smell and fall asleep surrounded by this smell. You begin to feel renewed and ready to evaluate your life as a caregiver.

Take a few moments in quiet reflection. When you feel ready, open your eyes and come back to your surroundings, feeling revived and refreshed.

Spend a few minutes journaling about this experience. At times, we as caregivers might feel like we’re caught up in a whirlwind of emotions and thoughts. Ask yourself the following questions and write down your answers. That way you can come back from time to time and read what you’ve written to re-charge yourself:

  • What is missing in my life at this time? Is it solitude, communion with others, socialization, etc.?
  • How can I be more sensitive to the changing senses that my loved one may be experiencing because of the disease?
  • What can I do to enhance the quality of my life and that of my loved one?
  • What concrete plans will I make to incorporate these finding in my life?
  • Envisage your life emerging from this vantage point. What will it look like?

Our sense of smell is ten thousand times more sensitive than any of our other senses. May we come to appreciate this marvelous wonder of the human body! Helen Keller puts it so beautifully: “Smell is a potent wizard that transports you across thousands of miles and all the years you have lived.”

I wish you peace, patience, and joy in your caregiving today and every day!

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Please feel free to pass on this reflection to family and friends, but please give credit to Merle Stern and this website. I’d love to get your reactions and feedback about the meditation. Just jot me a note in the comments section below.

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If you’d like information about “smell training,” I’d recommend you watch this ten-minute video by Chris Kelly who is affiliated with the Monell Chemical Senses Center: https://youtu.be/wtAkWHN2xhc.

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For an inside look at how a person with dementia experiences the sense of smell, please check out this blog, “Welcome to Dementialand:” https://welcometodementialand.wordpress.com/2016/09/19/what-you-smell-in-dementialand/.

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Alzheimer’s and the Senses Part Three: Smell

Freshly baked cherry pie. Roast turkey. Warm mulled cider. Do the thoughts of these smells have you salivating? Old Spice men’s aftershave lotion (my Dad’s favorite). Skunk spray. Lilacs in bloom. Ammonia. Sweaty clothes. What memories do these odorants arouse? october8-nose-smelling-flower-adult-19033_640

Our incredible sense of smell serves many functions. It is a “portal” to our emotions. It is one of the drivers of what we eat and drink. Our ability to smell alerts us to possible dangers, and is critical to our good health and quality of life.

How Our Sense of Smell Works

The average human being, it is said, can recognize up to 10,000 separate odors. Our human olfactory (smell) system has approximately four hundred different receptors. These enable us to detect and identify thousands of odorants. Odorants are microscopic molecules released by substances around us that become airborne. When we breathe or sniff the air, these odorants are drawn into our nose, entering a complex system of nasal passages.

Lining a portion of these nasal passages is the olfactory epithelium, a thin sheet of mucus-coated sensory tissue located high inside the nose. The odorant molecules we breathe in settle into the mucus, making contact with and stimulating the specialized olfactory sensory cells, called sensory neurons. Each of these forty million different olfactory neurons has one odor receptor. These nerve cells connect directly to the brain.

october-8-nose-chartEach nerve cell has thin threadlike projections called olfactory cilia which float in the mucus. Olfactory cilia contain the molecular wherewithal for detecting and starting the process to recognize the odors, and for generating an electrical signal to be sent to the brain.

Electrical signals are sent to the brain along a thin nerve fiber known as an axon. Axons from the millions of olfactory receptor cells bundle together to form the olfactory nerve. Olfactory receptor cells send electrical messages via the olfactory nerve to the olfactory bulb.

Odor information eventually travels to the limbic system, the part of the brain involved in emotion and memory. Other odor information goes to the olfactory cortex where thought processes take place. Cross-connections between the limbic system and the cortex may be essential in forming our emotionally-laden and lifelong olfactory memories. The odor memories we make as children last many years.

Odorants reach the olfactory sensory cells in two ways: 1) by inhaling through the nose; 2) by chewing our food aromas are released through the channel that connects the roof of the throat to the nose.nose-and-mouth-are-connected This is one reason why, when we are congested due to a sinus infection, flu, or a head cold, this channel is blocked, affecting our ability to smell and taste our food.

Our sense of smell is also influenced by what is called the common chemical sense. This sense involves thousands of nerve endings, especially on the moist surfaces of our eyes, nose, mouth and throat. These nerve endings help us sense irritating substances – like the tear-inducing power of an onion, or the coolness of menthol.

Types of Smell Disorders

According to the National Institutes of Health, Senior Health, there are several types of smell disorders depending on how the sense of smell is affected.

  • Hyposmia occurs when a person’s ability to detect certain odors is reduced.
  • Anosmia is the complete inability to detect odors.
  • Parosmia is a change in the normal perception of odors, such as when the smell of  something familiar is distorted, or when something that normally smells pleasant now smells foul.
  • Phantosmia is the sensation of an odor that isn’t there.

The Importance of Smell  

Our sense of smell can serve as a first warning signal, alerting us to spoiled food, the odor of a natural gas leak or dangerous fumes, the smoke of a fire. When smell is impaired, it can also lead to a change of eating habits. Some people may eat too little and lose weight, or eat too much and gain weight. In severe cases, loss of smell can lead to depression.

Assessments for Loss of Smell

Serious smell loss can be caused by nasal obstruction that requires corrective surgery or by chronic viral infections with swelling that require special medications. Otolaryngologists are physicians who specialize in diseases of the ear, nose, and throat, including problems affecting taste and smell. An accurate assessment of smell loss includes:

  • Physical examination of the ears, nose, and throat.
  • Personal history including exposure to toxic chemicals or trauma.
  • Smell tests.
  • Discussion of treatment options, such as surgery, antibiotics, or steroids.

Alzheimer’s, Dementia and Olfactory Testing

An impaired sense of smell is normal as we age. Older people become less adept at identifying smells. Researchers estimate that more than one-third of adults over age seventy have olfactory deficits.

Losing our sense of smell could be a sign of brain damage. The sense of smell is often the first sense to go in cognitive decline, even before memory loss. It’s not the nose’s sensitivity that diminishes, but the brain’s capability of identifying what the odors are.  However, not all individuals with smell loss will develop a brain-related disorder.

Olfactory testing is gaining attention as researchers are discovering that changes in odor identification and loss of ability to smell may be an early biomarker in identifying Alzheimer’s, Parkinson’s, and other neurodegenerative disorders. Multiple studies have demonstrated a high correlation between Alzheimer’s disease and the presence and build up of beta amyloid protein and tau pathology in the areas of the brain that help us detect and perceive odors.

In one study, researchers at the University of Florida asked over ninety participants to smell a spoonful of peanut butter at a short distance from their nose. Participants included persons with a confirmed early stage Alzheimer’s diagnosis, persons with other forms of dementia, and those who had no cognitive or neurological problems. Only those with a confirmed diagnosis of early stage Alzheimer’s had trouble smelling the peanut butter, with their left nostril. The difference in smell between left and right nostril is unique to the disease. Currently, a smell test is not used as a diagnostic tool, but only to confirm an Alzheimer’s diagnosis. The theory is that, as dementia begins and progresses, the parts of the brain, particularly on the left side, that distinguish odors start to deteriorate. The brain is less capable of identifying smells.

At the 2016 Alzheimer’s Association International Conference in Toronto, researchers at Columbia University Medical Center, New York, reported on a study of 397 participants with an average age of 80. The study tested the predictability of dementia transition and cognitive decline using the 40-item University of Pennsylvania Smell Identification Test (UPSIT). october-8-smell-testThe test involved a scratch-and-sniff test of familiar scents like turpentine, lemon, licorice, and bubble gum. Participants were followed for four years. Their conclusions were that odor identification impairments were predictors of the transition to dementia.

How You Can Help

Smell ensures we maintain our personal hygiene and offers us an essential interaction with the world around us. Smell is essential for giving us pleasure from simple things such as flowers and food. For many people smell also helps to re-create memories.

Declines in the sense of smell are not obvious to detect. Although smell is not directly life threatening, it can still impact one’s quality of life. Nutrition and safety concerns are heavily linked to smell. People who have total or partial loss of the sense of smell are almost twice as likely to have some kinds of accidents than people who have normal smell function: cooking-related accidents; exposure to an undetected fire or gas leak; eating or drinking spoiled foods or toxic substances.

1) A Medical Checkup

Since changes in a person’s smell can occur for numerous reasons, schedule a medical checkup to ensure that there is no tumor, polyps, physical blockage or condition that might require treatment.

2) Preventing a Fire or Gas Leak

Your loved one may not be able to tell or smell that he or she left something burning on the stove or that gas is leaking and causing danger. Place sensors in their houses that can detect and warn of gas or smoke, and ones that can pick up the odor of dangerous airborne chemicals. Make sure smoke detectors are still working and change batteries on a regular basis. There are also items such as the “Fire Avert” detector. This invention detects a stove fire by smoke rather than heat. When triggered by the sound of a smoke detector, it shuts off power to the stove. (See below for description details.)

3) Labels on Bleach and Other Chemicals

Make sure that bottles of bleach, ammonia, and other chemicals are clearly marked in large letters, or kept locked away so they are not mistaken for liquids to drink.

4) Ensuring a Healthy Appetite

About 95% of what we think is taste is actually smell. With loss of smell, foods may taste different or have little or no taste. Plan meals that contain foods with different flavors, spices, and textures (e.g. creamy, crispy, crunchy). october-smell-herbs-restaurant-939436_640Try experimenting with a variety of spices and fresh herbs. To prevent malnutrition, ensure that the food your loved one consumes has appropriate levels of vitamins and nutrients.

5) Marinate Meat and Fish

One way to add a lot of flavor to meats and fish is to soak them in a marinade for a few hours or even overnight. Grocery stores carry a variety of prepared marinades, or you can make your own with simple pantry ingredients. Keep any foods in the refrigerator when they’re being marinated so that they remain safe to eat. Once the food is done marinating, cook it as you usually would and have your loved one try it. It just may be that what they previously couldn’t taste well now tastes great.

6) Preventing Food Spoilage

When shopping for food, try to buy in small portion sizes rather than bulk. If you do buy in bulk, then divide food into one-portion size individually sealed packages to store and cook.  Check the pantry shelves, refrigerator and freezer at least once a week for outdated, moldy and spoiled food.

7) Daily Hygiene

Many persons with smell loss have no idea that they have body or clothing odor, even if they do the “sniff” test. If they realized this, most would be embarrassed. If just the thought of bathing or showering your loved one makes you cringe, take a look below at the California Central Chapter’s recommendations and tips.

Avoid pointing out that clothes they are wearing are dirty or smelly. This puts your loved one on the defensive and could set up an argument. Instead, remove the soiled clothing from their room at night once your loved one is sound asleep. They’ll forget about it the next morning if there’s something else handy to put on. You might also purchase identical outfits, so that one can be washed while the other is worn.

8) Mold and Mildew

When you walk into the home, is there a musty smell? Your loved one may not be able to notice this smell. It is due to mold or mildew which are both fungi spores and could become a health problem. There are cleaning solutions available on the market. Air movement is also important for removing moisture and odors.  

Understanding the loss of one’s sense of smell and its associated problems will surely maximize your loved one’s quality of life, help them retain their independence longer, and even avert a dangerous accident.

I wish you peace, patience, and joy in your caregiving today and every day!

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( Sources used in preparing this article: 1. National Institutes of Health/Senior Health; 2. National Institute on Deafness and Other Communication Disorders; 3. The Monell Chemical Senses Center; 4. Alzheimer’s Association/AAIC.)

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Watch this four-minute TED-Ed animated explanation of our remarkable sense of smell: http://ed.ted.com/lessons/how-do-we-smell-rose-eveleth.

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To read more about the Fire Avert product, go to: http://www.firerescuemagazine.com/articles/print/volume-8/issue-1/professional-development/firefighter-s-invention-stops-kitchen-fires.html. This product is available through the Alzheimer Store. You can get a 10% discount by placing your order through my website: http://caregiverfamilies.com/products/.

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Find good tips on bathing with this newsletter from the California Central Chapter of the Alzheimer’s Association: http://www.alz.org/cacentral/documents/Dementia_Care_32-_The_Battle_of_the_Bathing.pdf.

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Dementia care advocate and trainer, Teepa Snow, has a short video that describes the loss of smell:  https://youtu.be/j9FFLaymycg.

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This four-minute video on problems with smell is by the National Institutes of Health: http://nihseniorhealth.gov/problemswithsmell/aboutproblemswithsmell/video/smell1_na.html?intro=yes.

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Eyes: A Reflection on our “Windows” to the World

The human senses are our contact to our environment. Perhaps the most important organs of sense are our eyes. An English proverb attests: “Eyes are the window of the soul.”  

Eyes: Our Windows to the World

Eyes: Our Windows to the World

In Part Two of my blog series on dementia and the senses, I focused on eyesight. Our eyes not only connect us with our surroundings, but help us maintain sharpness of our minds.

I often take my eyesight for granted. But the eyesight of persons with Alzheimer’s and dementia may change as the disease progresses. This will cause them to perceive and interpret their environment differently.

One of my favorite poets, Rumi, wrote, “Everything that is made beautiful and fair and lovely is made for the eye of one who sees.” With the following reflection, I hope to focus your awareness as a caregiver on seeing, appreciating, and “experiencing” objects in your daily life and surroundings. It was composed by my mentor and friend, Merle Stern.

Take a few moments to relax. Let your worries drift away as you dwell in appreciation of our remarkable sense of sight.

Find the time of day when you know that your life will be without distractions, not easily disturbed, and therefore an opportunity for reflection. Find a spot where you know there will not be any external intrusion. Take a comfortable position whether sitting or lying down.

After you have settled, focus your awareness on your breathing. Experience the movement of your breath as you quietly breathe in and out. Now feel your entire body in rhythm with your breathing.

With your eyes still open, scan your surroundings. Allow your eyes to settle on something to which you feel drawn. Depending where you are, it might be a flower, an arid landscape, a tree, an empty vase, a piece of furniture that you hope to refinish, a precious memento like a trophy, plaque, or favorite painting. september-20-vase-of-flowers-with-book-1329155_640

Become aware of what you are experiencing as your eyes settle on this object. What is your sight communicating to you? Even though you have seen this object before, somehow it is as if you are seeing it for the first time. Feel yourself drawn to connect to what you are seeing. Become aware of the feelings generated within you. Do you feel relaxed, serene, anxious, restless, or distracted by suddenly remembering you had something else to do?

Now engage in a dialogue in order to develop a relationship with your chosen object.  Formulate your own questions that specifically apply to that object. For example, had I chosen an empty vase, these are some of the questions I would pose:

  • I notice you do not have any flowers. Are you often without flowers?
  • Do you like having water and flowers in you?
  • How do you feel when you do not have any flowers?
  • Do you feel you are just on display?
  • Do you feel that there is a purpose to your existence? If so, what is it?
  • Are you here because you were given as a gift? Are you appreciated as a gift?
  • Do you have any favorite flowers, and if so what kind?
  • How do you feel when the flowers are gone?
  • How do you feel when the flowers have died but not removed, and the water emits an unpleasant smell?

After you have had all your questions answered, and you feel that you know your chosen object, take a moment and absorb what you are experiencing.

Now gently close your eyes. You are deliberately closing out light. Notice how your environment changes? Take a moment and absorb what you are experiencing. What is it that resonates with your being, e.g., the emptiness of the vase? What has awakened inside of you? How has the sight of the chosen object connected with what you are experiencing at this given moment in time? In the darkness you cannot see the object, but you know it is there. What are you experiencing? What is the difference between seeing the object in light, and knowing it is there in the darkness even though you cannot see it?

When you are ready, gently open your eyes and come back to the room.

What is the value of this experience for you? How can you be more sensitive to your loved one’s changing perception of their environment? Take a few minutes to write your reflections in your journal.

I wish you peace, patience, and joy in your caregiving today and every day!

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Many thanks to Merle Stern, my friend and mentor, for composing this meditation. Feel free to pass it on to friends and family, but please give credit to Merle and this website.

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Here is a unique version of the song, “What a Wonderful World,” sung by the English boys’ chorus, Libera. The lyrics describe seeing the bountiful beauties of this world: https://youtu.be/b4nmVhnGtDw.

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My younger sister Marcia and I recently published a journal called My Blessings Journal. MyBlessingsJournalIt can be a useful tool to introduce you to the joys of keeping a journal. You can order a copy through my website: CaregiverFamilies.com/book/.

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Alzheimer’s and the Senses Part Two: Sight

My friends in high school nicknamed me “Eagle Eyes” because I had fantastic long distance eyesight. Now, almost seventy, I wear glasses, and my ophthalmologist told me that I have the beginnings of a cataract.  September eyesight 58345D779A

This is not so unusual. By age seventy, fewer than thirty percent of elderly people have 20/20 vision. According to the University of Michigan’s W. K. Kellogg Eye Center website, ninety percent of people over sixty-five have a cataract, and fifty percent of people between seventy-five and eighty-five have some vision loss due to cataracts.

There are several signs that our eyes are losing some sight. These include: changes in our ability to read and recognize people, difficulty in finding things or locating food on our plate, falling more, becoming hesitant when approaching curbs or stairs, and being startled by persons approaching us from the side.

Sight loss evolves from four conditions:

  1. Normal aging;
  2. Eye conditions such as macular degeneration, glaucoma, and cataracts;
  3. Health conditions, such as a stroke or retinal complications from diabetes;
  4. Dementias that may have a direct impact: Alzheimer’s, vascular dementia, Lewy Body dementia, and posterior cortical atrophy.

    Four Types of Vision

    Four Types of Vision

Seeing is a complicated process. Our eyes do not actually “see.” They act like a camera, transmitting information to the brain to interpret alongside information from our other senses, thoughts, and memories.

With Alzheimer’s disease this interpretation process becomes altered. Even though the information being transmitted remains the same, and the eyes and optic nerve suffer no injury, the brain will no longer process the information in the same way. Unfortunately, more than sixty percent of individuals with Alzheimer’s will have a decline in some sort of visual capacity.

Sight loss can contribute to increased confusion in persons with dementia. They are more vulnerable to falling. Their field of vision also shrinks. Dementia trainer Teepa Snow has an excellent video describing the visual perception range of a person with dementia. (See the resource below this article.) To get an idea how vision loss impacts a person in the mid-stages of the disease, take a ruler and hold it in front of your face horizontally and then vertically. This is their range for vision of approximately twelve-inches in diameter.

Diminishment in eyesight for a person with Alzheimer’s can occur in five areas. Let’s take a closer “look” at each of these, and what you might do to provide some help. These ideas come primarily from the Alzheimer’s Association, Central Ohio Chapter.

Area 1: Depth Perception

If there is damage to the right parietal lobe then the person might have problems with judging distances in three dimensions. Three dimensional or two-dimensional objects appear flat or as shadows. A black or dark door mat or rug may give the perception that there is a large hole in front of the doorway. Navigating stairs is a common difficulty. The person cannot distinguish curbs or steps. They have difficulty seeing water in a glass, or even the glass itself. Shiny flooring appears wet or slippery.

How you can help: Provide extra lighting where possible. Increase wattage of light bulbs. Reduce glare inside the home by pulling down shades when it is particularly sunny outside. Cover glass surfaces on tables. Close curtains or blinds at night. Alert them to curbs and number of steps or stairs when walking.

Area 2: Motion Blindness

The person with dementia is unable to sense movement. Their world is a series of “still frames,” and not a “movie” that most of us see. Part of the brain is damaged in the areas that receive signals from their peripheral vision. Some researchers believe this may account for why people with dementia can become lost, even in familiar surroundings. They can’t see where they are going or retain the memory of familiar landmarks. They can’t see anything except straight ahead without making a conscious effort to move their head instead of their eyes to see. They may also put things down and not be able to see or remember where they put them if they don’t move their heads.

How you can help: When you are out walking together, offer guidance and support. Offer your arm or take their hand if they will let you lead them. Alert them to upcoming sloping areas, steps or curbs. At home, keep a clutter free environment in walkways and hallways to avoid tripping hazards. At mealtimes, describe the food and drink, where it is on the table, and who and what condiments are beside or nearby your loved one.

Area 3: Color Perception

In aging eyes the lens yellow a bit and filter out blue light. Colors often appear faded or washed out, especially colors in the blue-violet range. Blacks and dark blues are particularly difficult to tell apart without bringing items into a bright light. The retina has more receptors to see “red,” which makes this color easier for most people to see.

How you can help: Color contrast is an important element. If possible, serve light food on a dark plate and dark food on a light plate. Serving mashed potatoes on a red plate rather white plate can make it easier to see. Serve drinks especially water in a distinctive color of glass. Put coffee in a white cup as opposed to a dark one. Painting a baseboard a contrasting color from the wall can help the person distinguish where the wall ends and the floor begins.

Area 4: Contrast Sensitivity

The ability to see a shade of gray on a white background or to see white on a light gray background declines with age. Eye specialists routinely test eyes for visual acuity, but contrast sensitivity testing often isn’t included in a routine eye exam. This test measures one’s ability to distinguish between finer and finer increments of light versus dark (contrast), the ability to see items that may not be outlined clearly, and items that do not stand out from their background. The Pelli-Robson chart is one of the most widely used devices to test contrast sensitivity.

Pelli-Robson Contrast Sensitivity Chart

Pelli-Robson Contrast Sensitivity Chart

A person with low contrast sensitivity may also have trouble seeing traffic lights or cars at night,  spots on clothes or other items, a flame burning on a stove, or misses facial gestures. Poor contrast sensitivity also increases the risk of falling when a person needs to step down from a curb or stair onto similarly colored pavement or flooring.

How you can help: Arrange for regular eye checks and a test for contrast sensitivity. Inform the optometrist your loved one has dementia so this can be taken into consideration when arranging for appointments or treatment. Eye glasses with specially designed yellow-tinted lenses can improve contrast. Improve lighting levels in the home, especially bright light for reading. A white toilet seat against a white wall may make it more difficult for the person with dementia to tell where to sit. Consider replacing the seat with a red one. Place contrasting colored rugs in front of doors and steps to help the person with dementia anticipate stairs and entrances. White or yellow borders on the edges of steps may also help.

Area 5: Visual Agnosia and Misidentifications

Agnosia is the loss of ability to recognize what objects are and what they are used for. A person with dementia may see a fork or a spoon but not remember what it is used for or how to hold it.

Agnosia is also the inability to recognize who people are. For example, they may be unable to distinguish the difference between their husband, son, or brother.

University of Montreal researcher Dr. Sven Joubert, Ph.D., conducted a study regarding the ability of persons with Alzheimer’s to perceive faces and cars. The results indicated that the brain must perform a local analysis of the various image components perceived by the eye. The study confirmed that Alzheimer’s disease impairs visual face perception.

How you can help: Try to imagine a person’s fear looking at a loved one and not recognizing him or her. Move yourself into the person’s visual field before you start to communicate or care for them. Get their attention by identifying yourself. This is a cue, especially if you are visiting and they haven’t seen you for awhile. I used to greet my mother in the nursing facility by saying, “Hi, Mom! It’s me, Vicki, your daughter.”

The latest research from two studies regarding early identification of cognitive dysfunction was presented at the Alzheimer’s Association International Conference in July. These studies showed that thinning of the retinal nerve and protein deposits in the eye could be used to detect early signs of dementia. Amyloid protein found in the brains of persons with Alzheimer’s can also accumulate in the retina. Perhaps in the near future a simple eye test will become a relatively easy, non-invasive way to spot cognitive changes early on.

Understanding potential eyesight problems, along with your efforts to help optimize the sense of sight in your loved one, will surely maximize their quality of life, help them retain their independence longer, reduce risk of falls and injuries, and provide reassurance at a time when the way they perceive reality may be changing.

I wish you peace, patience, and joy in your caregiving today and every day!

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Teepa Snow, dementia care expert and trainer, describes how the visual field of a person with dementia changes in this short video: https://youtu.be/NCCK-UDhXag.

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This video examines the “Emotional Aspects of Vision Loss,” by Dr. Sandra Fox, OD: http://training.mmlearn.org/video-library/emotional-aspects-of-vision-loss.

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For information about dry and wet age-related macular degeneration and other eye conditions, visit the website of the American Academy of Opthalmology: http://www.aao.org/eye-health.

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Put yourself in the shoes of Joe’s Mom, a woman living with dementia, in this three-minute video, “A Walk through Dementia,” produced by Alzheimer’s Research UK: https://youtu.be/R-Rcbj_qR4g.

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To read about Dr. Joubert’s study of visual face perception check out: http://j-alz.com/content/why-do-people-alzheimers-stop-recognizing-their-loved-ones.

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This four-minute Ted-Ed video examines the science behind night vision comparing our human eyes to those of other creatures: https://youtu.be/t3CjTU7TaNA?list=PLJicmE8fK0EiEzttYMD1zYkT-SmNf323z.

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In Tune with the Heartbeat of the Universe

Two weeks ago I introduced “Part One” of a series of articles focused on the senses, in particular the sense of hearing.

Today, I hope to illustrate the emotional impact of sound in our lives with the meditation below.

In Tune with the Universe

In Tune with the Universe

This exercise is meant to help you become acutely aware and alert to the many sounds around us, and the impact of hearing on the quality of our lives. This meditation was designed specifically for caregivers by my friend and mentor, Merle Stern. I ask that you take a few precious minutes to relax and discover the everyday heartbeat of the universe, then dwell in appreciation of our amazing sense called hearing. 

When you are ready, find a comfortable position, and abandon your weight to the chair or sofa in which you are sitting. Gently close your eyes and turn inwardly to the light within you.

Focus your awareness on your breathing. As you breathe in, feel your body relax. As you breathe out, feel the tensions leave your body.

Become aware of the variety of sounds you hear. It may be the siren in a distance; the dripping of the faucet tap; the whirring of a fan; the chirping of different birds; people talking; the radio playing; the laughter of children; the slamming of a door – the list is endless. Take as much time as you need to identify all the sounds you are hearing.

Listen now to the loudest sound, then the second and third loudest sound, until there is silence. Review what you are hearing again, but this time, rate the sounds — from loudest to the softest. There are times when the softest sound speaks louder than that of thunder. For example, the faint cries of a child in distress may speak louder than the roar of a lion. There may also be times when a voice is deliberately tuned out in order to experience silence.

Now become aware that each sound you hear is triggering thoughts. Notice how your brain automatically tries to identify the source. For example, when you hear a siren, you differentiate whether it is an ambulance or a fire truck. When you hear your television, you identify the station, or perhaps even the person speaking or singing. If there is a humming sound in your home, you note the air conditioner, or refrigerator ice maker, or washing machine. Make a mental note of the thoughts that accompany what you are now hearing.

Become aware that as you hear a sound, including a voice, you automatically make a mental note of its volume, tone, and pitch. For example, when you hear the siren, you note whether it is loud, and whether the sound is gradually getting louder or fading in the distance. Compare that to a lullaby being sung. You find it soothing, and you conclude that a baby is being rocked to sleep.

Now become aware of the vibrations that are invoked by what you are hearing. For example, your body responds differently to the sound of a siren as opposed to a lullaby being sung.

Become aware that you are giving meaning to what you are hearing. You are deciding whether the sound is soothing or disquieting. You also identify the location by what you are hearing – if the sound is near or far, going from soft to loud, or the reverse. You try to figure out the reason behind the sound.

Aug 20 man on hill with milky-way-916523_640Feel yourself being surrounded by all the sounds you are hearing. You are also absorbing all the accompanying thoughts, volume, tone, vibrations, and the meanings that you have given to them. As you immerse yourself in these different sounds, become at one with them.

At the backdrop to what you are hearing, there is silence. Take a moment and locate that silence. See if you can find the sound within the silence. Now experience the peace of silence which permeates every cell within your body…within your entire being.

In this silence, try to hear or feel the vibration of your own heartbeat. Take a moment and listen to your heartbeat. Make a mental note of your thoughts as you hear the beating of your heart. Become aware of its volume, tone, rhythm. Become aware of the vibrations and their effect on your entire body, on your relationships, on your psyche, and the way in which it infuses your spirit.

As you continue to listen to your heartbeat, experience it in tune with the heartbeat of the universe. It is like a choir of which you are one of the singers. Feel what it is like to be in this choir of the universe of which you are an important member. Become aware of the difference between hearing your own heartbeat, and when you become at one with the heartbeat of the universe, and the relationship between both.

Take a moment and jot down in your journal a few lines as to what are your thoughts, feelings, and experience at this moment.

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Sound exists in space as interactions of electromagnetic vibrations. Here is a seven-minute sample of sounds of planets, moons and rings in our solar system: https://youtu.be/-MmWeZHsQzs.

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Pablo Arellano is a Mexican composer, director and writer who is known for his movie music scores. Listen to this harp music and relax to this piece called “Walking in Heaven:” https://youtu.be/DtK8G0hypLI.

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Composer Eric Whitacre leads a virtual choir of 5,905 singers, age 6 to 98, of every race, color and creed from 101 countries around the world. Here is “Fly to Paradise.” Surround yourself with sound for the next few minutes: http://ericwhitacre.com/the-virtual-choir/history/vc4-flytoparadise.

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Alzheimer’s and the Senses/ Part One: Hearing

Dementia is not just about memory loss. It impacts many different brain functions including the sense of hearing. The Better Hearing Institute advises us: “Listen to your ears. They might be telling you something.” Hearing loss should be the number one red flag, a sign of developing dementia or Alzheimer’s disease.

The Human Ear

The Human Ear

The ear was considered the seat of memory in antiquity, particularly in Latin literature. This was an era when books were scarce. The ear was thought to be the natural avenue of information. The ancients understood that a person who does not listen attentively does not remember well. Hence, we have the adage, “In one ear and out the other.” (The Classical Weekly, vol. XII, No. 4, p. 28.)

My husband and I recently attended a presentation on the effects of hearing loss sponsored by a local hearing aid company. I came to realize the close association of hearing loss with dementia. It also shocked me enough to schedule a hearing test. What I learned about our incredible sense of hearing was enlightening. Here’s a synopsis of that presentation, along with further research I did in this regard.

Our Amazing Sense of Hearing
Hearing is one of our most extraordinary processes. Our auditory system is completely intact in the womb by twenty weeks gestation. At twenty-three weeks a fetus can respond to loud noises, and may jerk or even hiccup after hearing a loud sound. (babysense.com)

The auditory system is comprised of two subsystems: the peripheral system (the outer ear, middle ear, and inner ear), and the central auditory system, (from the cochlear nucleus up to the auditory cortex of the brain). When these parts all work together, we can hear and process sounds. We rely on our hearing for many things:
• understanding speech which educates, informs, and entertains us;
• recognizing sounds that can warn and alert us to danger;
• recognizing background noises of nature and the world around us;
• appreciating pleasurable, beautiful sounds.

Diagram of the Ear

Diagram of the Ear

It is the cochlear, a spiral shaped tube filled with fluid and hair cells, which creates the electrical signals that pass through the auditory nerve to the brain. Sound is processed in different regions of the auditory cortex, part of the temporal lobes located on both sides of the brain. Here these electrical signals are interpreted as music, speech, or other sounds such as laughter, thunder, etc. The meaning of words is also processed in the temporal lobes.

The Brain and Hearing Loss
Studies at Johns Hopkins University, the University of Utah Health Care, and the National Institute on Aging show a link between hearing loss and mental decline. “Making sense of sound is one of the most computationally complex tasks we ask our brains to do: process information in microseconds,” says Nina Kraus, Ph.D., neuroscientist and director of Northwestern University’s Auditory Neuroscience Lab. The strain of decoding sounds over time may begin to overwhelm the brains of people with hearing loss. This forces the brain to devote too much energy to processing sound, and leaves the person more vulnerable to dementia. “Adults with hearing loss are more likely to develop problems thinking and remembering than adults with normal hearing.” (Starkey.com)

Statistics by the National Institute of Deafness and Other Communicative Disorders (NIDCD) reveal that one out of three persons between the ages of 65 and 74 have some degree of hearing loss. This number increases to almost 50% for those who are over 75. However, less than 25% of those who need hearing aids actually get them.

Dementia and Hearing Loss
Hearing impairment can make cognitive dysfunction worse. If a person can’t hear the words, their brain won’t remember the words, and those words start to become confusing. Hearing loss can bring on anxiety, social isolation, reduced alertness, and compromised personal safety. These are factors for developing dementia.

Research shows the following:
1. Adults with mild hearing loss (greater than 25 decibels) are two times more likely to develop dementia.
2. Adults with moderate hearing loss are three times more likely to develop dementia.
3. Adults with severe hearing loss are five times more likely to develop dementia.

Hearing and Quality of Life
It is recommended that every person over fifty years of age get their hearing tested every three years. A hearing evaluation should also be part of any assessment of cognitive function. Persons with Alzheimer’s and hearing loss can use and benefit from hearing aids. Improved sensory perception won’t stop the progression of Alzheimer’s disease, but increasing their ability to hear can help reduce the person’s confusion.

Making Adjustments for Communicating with a Person with Hearing Loss and Dementia
1. Get their attention. Always face the person when speaking. Get to their level. Gain attention by speaking their name or gently tapping them on the shoulder or arm.
2. Provide good lighting. Take care that bright light is not shining directly in the person’s eyes.
3. Reduce sudden unexpected or loud background noises as this may cause sensory overload. Avoid having too many people speak at the same time.
4. Slow down. Speak slower, more distinctly, but don’t let your speech become too exaggerated.
5. Speak in a normal tone. Don’t shout, as shouting can distort your voice and make it more difficult to understand. Don’t chew gum or have candy or food in your mouth while talking.
6. Simplify the message or write it down. Rephrase if needed. Give visual cues and gestures, such as moving your hands to your mouth to show eating food, brushing teeth, etc.
7. Give them time to hear what you are saying. Allow time for their brains to process and think of the answer.
8. If you are out in a restaurant, choose a table or booth away from a lot of noise. Have the person sit at the end of the table or lean with their back against the wall. These things reduce noise levels.

There is still much that we don’t know about the connection of hearing loss with dementia. But researchers are working diligently to find the answers. In the meantime, we can be more mindful of our incredible sense of hearing. Take time to listen and appreciate the wonderful sounds of nature, music, and the human voice.

I wish you joy, peace, patience, and love in your caregiving journey today and every day!

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Hearing loss is not a joke. But try this forty second hearing loss simulation featuring the Flintstones and Barney: https://youtu.be/ar1Dq-M2ok4

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Here is a ten-question hearing quiz to take: https://www.nidcd.nih.gov/health/do-you-need-hearing-test-quiz

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Hearing aids are expensive. Read about two cheaper but effective “hearing amplifiers” recommended by an audiologist at Johns Hopkins University: http://dailycaring.com/affordable-hearing-aid-alternatives-for-seniors-hearing-amplifiers

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Bird lover, Lang Elliott, has a lovely website filled with the “Music of Nature.” Check it out by going to: http://musicofnature.com/listening-room/.

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Steppingstones of a Caregiver’s Journey

We live in a world filled with change and crisis. I live in South Florida. The recent shootings and deaths in Orlando continue to pre-occupy the local news media. Multiple theories were advanced about the shooter’s motives in committing such a horrible crime. Many families experiencing tragedies in the USA and abroad, are mourning the loss of their loved ones and are in crisis. A friend of mine, Angel A., recently wrote a sentence on Facebook that continues to reverberate with me: “The mettle of a human being is proven by how well he deals with and overcomes challenges.”Stepping_stones_3 Wikimedia.org by Alethe (1)

Professionals say that a crisis may be a turning point or a breaking point. The theory of crises concerns how people are able to handle major disrupting changes in their lives and their impact on that person and others surrounding them. We can either “move ahead” or “move backward” and regress.

Receiving the diagnosis of Alzheimer’s disease for a loved one is certainly a crisis in their life and our own. I can still remember sitting in the neurologist’s office with my Mom and Dad when he shared the results of her neurological testing. All her tests pointed to a probable diagnosis of Alzheimer’s and vascular dementia. My heart was pounding; my hands were sweating. I felt numb inside. That was sixteen years ago! It was a crisis in my life and that of my parents. After my father’s death three years later, I became my mother’s primary caregiver. I was cast into a daunting role that caused another crisis within me. Would I have the ability to meet her needs?

Researchers note that three factors play a role in determining how effectively a person copes in a crisis. The first factor relates to your personal characteristics. These include: your age, where you live, how you solved problems in the past, how mature and confident you are.

The second group of factors relates to the crisis. These factors are: what the crisis is, how sudden was it, how controllable is it.

The third group includes your social and physical environment. How supportive are your family and friends? How accessible are community support services?

As I reflect back to that crisis period, I realize that I was somewhat prepared to take on this role. I was privileged to have had training as a counselor back in the mid-70’s. As part of that training I was introduced to the “Progoff Intensive Journal Program for Self-Development.” Dr. Ira Progoff was a psychologist who pioneered the therapeutic use of writing as a tool for ongoing self-growth. This program provides a method for keeping a journal to gain awareness about the diverse areas of one’s life and to develop a more meaningful life. Workshops are conducted throughout the USA and Canada.

stepping stones pexels-photo-86364One of the exercises in that journal program is called “Steppingstones.” This exercise asks us to reflect on eight to twelve steppingstones. These are periods of significant events throughout our life which, in hindsight, were marks of change for us. For each steppingstone event, you then outline the emotions, persons, fears, and hopes affiliated with it.

Caring for my mother was indeed a steppingstone event in my life. As I reflect on what previous life experiences and inner resources prepared me for this, I see that it was not only a crisis time, but became a period of transformation.  It helped shape me to be the person I am today.

To those of you who are thrust into a similar caregiver role, and feel you are in a crisis situation, try to analyze the crisis. Break it down into the smallest components possible. Each of these components may not seem so threatening. It will also make it easier to develop specific strategies to deal with those smaller components one by one. Here are some recommendations to prepare yourself for dealing with the crisis:

  • First, learn as much information as you can about the disease. By increasing your knowledge and understanding, you also increase your ability to cope successfully. There are numerous books, videos on line, and websites filled with resources and ways to handle a variety of stressful situations. Check out some of these at the “Resources” section of my website.
  • Second, build up a support network for yourself of family, friends, co-workers, and neighbors. If possible, attend a caregiver support group, talk to a professional counselor, or join an online group. A solid support network is critical. Not only is this support necessary for your emotional stability, but it may be helpful when you need to make objective, rational decisions.
  • Third, preserve a reasonable emotional balance by managing upsetting feelings aroused by this crisis. Work through your feelings by restructuring your thinking, such as telling yourself, “I will not let the negative things that happen today affect my mood or behavior.” Processing your feelings allows you to deal with them and let go of the negative ones. You may not be able to control what’s going on, but you can control how you react to it.
  • Fourth, maintain a satisfactory self-image and a sense of competence. Once the initial shock has worn off, get back to performing those everyday routine basic life functions. Attempt to maintain a sense of pride in doing the best you can as a caring person.
  • Fifth, take care of yourself. It’s the responsible thing to do.

Here is a reflection that will help you review your life’s journey and what has prepared you for your role of caregiver, care partner. Find a quiet place where you will be free from any distractions. Make yourself comfortable and spend a few minutes just focusing on your breathing. As you breathe in, feel your body relax. As you breathe out, feel the tensions leaving your body. Let your body and mental state become calm and relaxed.

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Visualize yourself sitting under the shade of a tree, on a grassy knoll overlooking a brook. Visualize removing your shoes. In doing so, you can feel your body relax as your feet make contact with the grass. Feel the wind in your hair and on your face.

You are aware that you have been on life’s journey for a long time. Therefore, give yourself permission to take a rest and savor the journey upon which you have embarked. You are reflecting upon where you have come from, where you are going, and what has been the purpose of your life. You envision your life’s experiences as an education—an experiential education.

You begin to look at your past life through telescopic lens and you can see a path of steppingstones leading from the house/hospital/place where you were born to the grassy knoll where you are now sitting. You see how each steppingstone has brought you to where you are at this given moment in time. Through the telescopic lens you can see the sequence of your life’s experiences in which one stone connects to the other. It is like a thread that weaves itself in and around each stone, connecting one to another. In the process, the patterns and meanings of your life unfold. What up until this time has felt like a random disconnected series of events, now seem like the necessary steps in a journey towards enlightenment.

Do you wonder what lies ahead? In the distance you can see a hairpin curve obliterating what lies around the corner and beyond. Do you wonder whether you would be able to navigate the journey that lies ahead?

You remember that there have been significant turning points along your life’s journey. There were roads taken and roads not taken. Can you identify which moments were the important  turning points in your life? There were many obstacles along your journey, but now you envisage them as opportunities for growth.

 Each steppingstone is uniquely yours, to guide you, to define your pathway or journey through life. It is a way of creating yourself, defining who you are. There are times when you may feel as though you are “between a rock and a hard place” because the choices are limiting. Remember, you do have the choice to change your attitude.

How would you like your continued journey to unfold? It is like portaging – what do you carry with you, and what do you leave behind? What do you choose to bring with you to the next place? What is the baggage that is weighing you down…slowing you down and depriving you of enjoying your journey?

When you are ready to end this time of reflection, slowly bring yourself back to the present. Write a few lines about the journey taken and the journey still to come. What has been the value for you in mapping your steppingstones?  What strengths have you discovered that you possess to deal with a crisis?

Caring for a loved one has its joys, its sorrows, its high points, and low periods. The nature of the progression of Alzheimer’s disease is ever changing. Having the confidence in your ability to take on this caregiver role will help you better cope with the changes. One of my favorite bloggers, Maria Popova, puts it this way: “It is when life bends us to its will and we don’t break that we learn what we are made of.” Realize that you possess the qualities, the “mettle,” and resourcefulness that will help you through the crisis periods.

May you experience peace, patience, courage, and joy in your caregiving journey today and everyday!

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Many thanks to Merle Stern, my friend and mentor, for composing this meditation. Feel free to pass it on to friends and family, but please give credit to Merle and this website.

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Here’s a song that will hopefully bring you some joy today. “Happiness is here and now. I have dropped my worries.” https://youtu.be/Q5kteKBfQ0I

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For information about the “Progoff Intensive Journal Program for Self-Development,” go to: http://intensivejournal.org/.

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If you found this blog beneficial, please share it with others to spread the information. Also “like” us on our Facebook page: https://www.facebook.com/CaregiverFamilies/.