Extraordinary Vision

The last, for now, in our “Common Senses of Caregiving” series.
Rita had come to the hospital to have her gall bladder removed.  It had all sounded pretty routine when the doctor explained it to her, and she knew many people who had similar surgery without complications.  But Rita developed an irregular heart beat in the recovery room after surgery and was transferred to the intensive care unit for more monitoring.  When she was fully awake, she was confused.  The room was darkened, there were wires all over the place, and she could hear alarms all around her.  The nurse came in frequently to check on her, but her manner hurried and abrupt.  Rita answered “no” to every inquiry about pain or discomfort, but in reality she was hurting badly.  She didn’t want to be a bother to her busy nurse.   She lay rigid, her hands clasped the bedrails tighter and tighter with each wave of distress, her knuckles were pale.  She was terrified.  Her signs of distress were visible; did anyone around her truly see them?

When my nephew, Jacob, was a toddler, he and my mother were looking at pictures of family members.  Upon seeing his older brother Daniel’s picture, he looked up and said as only a child can, “That’s my brudder. I love them eyes.”  Jacob’s own eyes were big, brown, and innocent.  Why would Daniel’s eyes evoke instant recognition and affection 
in Jacob?  

Each of us has heard that “the eyes are the windows to the soul.”  What do you see when you look into another’s eyes:  love, joy, fear, confusion, anger, loss?  Our eyes telegraph our emotions to others. 

Of course, our eyes do much more than that.  From the moment we wake up until the moment we go to sleep, our eyes are taking in information and relaying it to our brains to interpret. Sight conveys more information to the brain than hearing, touch, taste, or smell. 

Vision enables our daily functioning and plays an important role in memory development.  At times, our memories influence what we see.  When we look at old family photographs, our memories convey more than the photo actually shows.  Vision is important to the development of imagination:  a small child fears the dark because of what she cannot see and what she imagines to be there.  Our sense of vision helps us build important contextual cues:  we can tell by sight when things are out of order.  Rita’s confusion in ICU was caused in large part by her inability to find the contextual cues she expected to see:  Why was she here? What was all this equipment?  Why was it so dark? 

Infants are born with a complete visual system, but they must learn how to see.  They receive instruction and constant coaching to recognize (and make sense of) shapes, colors, and people. As we age, our sight diminishes, as our other senses do.  Those with limited eyesight or blindness learn to rely more heavily on their other senses and on the guidance of others. 

Caregivers must often learn how to see – to look at things in new ways and to make sense of all that they are observing.  They may have very few familiar cues:  when a loved one suddenly becomes ill, we struggle to understand what normal recovery should look like.  Over time, caregivers develop a mental “camera” to record their daily observations of their loved or patients, and to distinguish between developments that look serious and require action, or situations that may not be as serious as they look.  And caregivers must also be willing to rely on others for help seeing.  Healthcare professionals can teach caregivers how to look for important health cues.  So can our friends and other family members. Sometimes, our emotions can obscure our ability to truly see a loved one’s condition; that’s why a casual friend may notice a change in your mother’s appearance more quickly than you do.

Experienced caregivers use their extraordinary vision to look for subtle signals, such as those Rita was displaying, to understand more fully what is happening with a loved one or patient.  If caregivers are hurried or stressed, it’s easier than one might think to miss visual cues.

Caregivers also learn how to mask the emotions their eyes might project – such as fear or exhaustion.  In fact, caregivers learn this lesson so well that sometimes their closest friends can’t detect the emotional burdens they are bearing.  They fulfill their daily responsibilities so skillfully and efficiently that we might not see the unexpressed chaos they feel inside. 

We need to learn to look at the caregiver and truly see; we need to observe and interpret their body language and nonverbal cues.  In essence, just as caregivers learn to “listen  with their eyes,” we must learn to listen – with extraordinary vision – to the cues and signals of fatigued caregivers. 

Our power to see gives us extraordinary vision.  Perhaps the best way we can use it is to follow young Jacob’s example:  to see through eyes of love. 

Live to Eat…Eat to Live, Part IV

Peaches was a very independent woman in her 80’s, she still had her own apartment and enjoyed going to the senior center regularly.  She was blessed with having four daughters living nearby who loved to spoil her.  But to be perfectly honest, Peaches confided, sometimes their daily visits were more than she could handle.  She would never tell them that; she knew they meant well.  Peaches also knew something was really wrong with her,  but she didn’t want to know what it was.  At her age what were they going to do?  Poke and prod and run endless tests --  that’s all they ever seemed to do anymore when she had a complaint. Peaches told no one about her problem:  she simply couldn’t swallow anymore, it always felt like things were getting stuck, like she was choking.  She made a decision to eat only  what went down easy, and that was mostly fluids.  Her girls always brought her delicious meals; she would praise their efforts and tell them she would eat a bit later.  She hated doing it but the food would end up in the trash so no one would know she wasn’t able to eat.  She made sure to always wear loose-fitting shirts so they wouldn’t see that her clothes were becoming much too large.  Peaches was content with her decisions.

One day her daughter Jean stopped in after work to discover her mother collapsed on the floor.  Within hours they discovered that their beloved mother had very advanced esophageal cancer.   The family and doctors decided to try everything they could to slow the progression, and Peaches was too weak to protest.  Peaches died several weeks later.  

Many caregivers have the added responsibility of caring for a loved one who resides in a separate home.  How can the caregiver make sure that there is enough food available, that it remains fresh, and that the individual actually eats the food?  Here are a few simple suggestions:

• If you are shopping for a loved one, purchase food you know they like, but purchase it in smaller quantities.  Their tastes and appetites may change from day to day.  If your loved one is on a restricted diet, keep a copy of the dietary restrictions with you when you prepare the grocery list.  
• Meats can be hard to chew, swallow, and digest.  Compensate with other sources of protein like milk, cheese, fish, eggs and peanut butter.
• Steer clear of canned soups and vegetables, pickled or brined foods, and lunchmeats – all filled with salt. 
• If your loved one’s favorites aren’t healthy choices, experiment with some healthy substitutions, like:
• Fruits and veggies, if chewing is not an issue.
• Peanut butter on toast, crackers, or sliced apples
• Cottage cheese and fruit, cheese and fruit or crackers, 
• Since you can’t be there every moment, be sure to buy user-friendly foods.  So many packages, cartons, and containers are tough to open.  Whenever possible, open containers ahead of time.
• If you are bringing meals into the home, prepare just enough for one meal.  Make small servings that can be frozen and easily defrosted and prepared.  Label and date them clearly.  It may be easier and more convenient to plan ahead for the entire week.
• Meals on Wheels is another option.  This service is reasonably priced and delivered Monday through Friday in many communities.  Most offer one or two meals a day (one hot/one cold).  An extra benefit is that the food delivery person makes contact with the individual at time of delivery -- another safety check.
• If you are worried that your loved one or patient is not eating the food you deliver, stop in at meal time to assess the situation. You can also check the refrigerator during your visit to see what is being eaten, what is needed, and if something is no longer edible.
• To increase the caloric content and improve the taste of dietary supplements like Ensure and Boost, add a scoop of ice cream and some fresh fruit is blended in.
• How can you tell if someone is losing weight, especially if they refused to be weighed?  Some of the most apparent signs are loose-fitting clothes, ill-fitting dentures, and facial changes (like sunken cheeks).  You can often detect a change simply by giving your loved one a hug.
• Treat yourself and your loved one to a meal out after a doctor’s appointment.  It may take additional effort, but a change of scenery can make food more appealing and make the doctor’s appointment more tolerable.  Time shared together on simple outings like this is irreplaceable.

Finally, caregivers usually place themselves last in line.  Their own nutrition and health are easily sacrificed while they take care of others.  If you know and love a caregiver, what can you do to improve their nutritional health and well-being?

·        Visit them with a healthy treat.  Consider a basket of apples in season, vegetables from your garden, or a main course that can be easily frozen (and served in a disposal container so that the caregiver doesn’t have to worry about returning your dishes).

·        Offer to do grocery shopping for them.

·        Offer to stay with their ill loved one, so the caregiver can go shopping without being under time pressures.  Quick grocery shopping often leads to poor choices.

·        Take the caregiver out for a meal if at all possible.

...

Live to Eat … Eat to Live, Part III

A continued look at taste…one of the “Common Senses of Caregiving.”

“I lost my appetite…I’m just not hungry.”

If you are caring for a seriously ill family member, friend, or patient, you have probably heard those words all too often.  When those in our care refuse to, eat only small amounts, or eat only infrequently, it’s easy to become frustrated.  We try everything:  favorite recipes, beautiful presentations, cajoling, bargaining, nagging.  None of the measures really work, unfortunately.  

So what does?

·        Appetite stimulants

o       Megace is a medication that stimulates appetite. It may improve food intake.  The physician must prescribe this medication.

o       Chocolate – as every woman knows -- is also an appetite stimulate.  A tempting choice may be a mini-peanut butter cup.  The size is not overwhelming; the chocolate stimulates the appetite; and the peanut butter center is a great source of protein that promotes healing.  (Peanut-butter cups are also good for the caregiver’s soul!)

o       Some seasonings can change the way food tastes and smells and stimulate appetite…so experiment! experiment with seasonings.

·        Controlling nausea and vomiting

o       Prescription medication can make a huge difference; it should be given 30-60 minutes before meals for peak effectiveness.

o       Eating high-carbohydrate foods like crackers and toast can help control  nausea. High-carb foods move through the stomach quickly and can be particularly helpful if eaten first thing in the morning.

o       Controlling the smell of food can at times control nausea.  Try serving food cold or at room temperature…or use seasoning and condiments like salt, lemon juice, catsup, pickles and olives that enhance food without emitting a smell.

o       Keep your loved one out of the kitchen when food is being prepared.  Once-beloved cooking and baking odors can trigger nausea when someone is ill or on certain medications.

·        Ease Fullness and Bloating

o       Limit fluids an hour before or after eating to keep from filling up quickly during meals.

o       Constipation can also decrease appetites because of the sense of fullness it may cause.

o       Avoid gas-producing foods, such as beans and cabbage.  Using straws may also cause prevent gas.

·        Controlling the Environment.

o       Maintain a comfortable, calm environment. Try to avoid being stressed about whether your loved one will eat.  Your stress can be contagious.

o       Serve frequent small meals rather than large meals.  Nothing can be more discouraging that a full plate of food to an individual with a poor appetite; too much food can actually be intimidating.  One great technique is to serve favorite foods in smaller portions.

o       If your loved one can tolerate it, choose foods that provide texture and crunch to help give a real sense of eating that is not provided by soft, bland foods.

o       Encourage your loved one to eat slowly and chew food thoroughly.

o       Encourage a period of rest after eating; activity can slow digestion and cause discomfort.

Special Considerations:

·        Caregivers should make every attempt to follow the special diets that have been prescribed for their loved ones (for example, to treat diabetes, congestive heart failure, or kidney disease), but if your loved one is just not eating, you may need to make some modifications to the diet.  The goal is to ensure that the patient eats, because eating promotes healing.  

·        Individuals who are nearing the end of their lives should be allowed to eat whatever they desire.  Caregivers should plan to buy and serve the food in smaller amounts.  For the very sick and dying, even the smallest taste can bring satisfy…and bring enormous pleasure.

Live to Eat … Eat to Live, Part II

A continued look at taste…one of the“Common Senses of Caregiving”

Herman was receiving tube feedings throughout the day and night because he could not swallow safely while receiving his radiation treatments.  So he sat in another room while his family ate their meals -- until Thanksgiving.  As the entire family gathered around the table to celebrate the holiday, Herman just wanted to taste his favorites: sweet potatoes, cornbread stuffing, and pumpkin pie.  With great care and intense willpower, he took small bites of each, slowly chewing and savoring … and then discarding the food without swallowing.  Herman knew that he might choke or develop pneumonia if he swallowed. He simply wanted to be with his family and savor the taste and textures of his favorite foods. 

Like Herman, many patients and caregivers struggle with the “mechanics” of chewing and swallowing.  Some scenarios are sadly all too common:

·        When a patient or caregiver loses weight, he or she might face poor-fitting dentures.  Patients and caregivers all too often neglect their dental health, which can lead to increased risk of gum infections and cavities. Good oral hygiene and visits to the dentist should continue, and urgent problems should be treated with   emergency care.

·        Tumors, chemotherapy, surgery and radiation may also cause swallowing problems, which are often treated by inserting feeding tubes into the stomach.  While feeding tubes help the patient maintain vital nourishment, they deprive the individual of the opportunity to taste food.  Swallowing difficulties should always be discussed with the physician, because the aspiration of food and fluids can result in choking and pneumonias.

A few simple techniques can go a long way toward easing mechanical problems.  Consider:

·        Using soft toothbrushes and prescribed rinses, which can make dental hygiene less painful.  Frequent mouth rinsing can also help eliminate bad tastes. 

·        Offering soft foods that require little or no chewing.  Thickened liquids like  milkshakes and thick soups are also easier to swallow.  Ice cream, puddings and applesauce are easy treats that most enjoy.  

Using Thick-It, a product that can be purchased without prescription.  It is a powder that is easy to mix, allowing for nectar-like, honey-like or pudding-like consistencies, for beverages and pureed foods like vegetables and meat.  It does not alter food appearance or taste.

 

Live to Eat … Eat to Live

Recently I started a series of blog entries I’m calling “The Common Senses of Caregiving.”  For the next several blog entries, I’m going to share some information about the importance of the sense of taste in caregiving (and for caregivers).

We equate eating with pleasure, sociability … and health.   Most of us can recall a home-made remedy our mothers or grandmothers gave us when we had colds or flu.  My wonderful Ukrainian grandmother, Johanna Timko, would mix a potent concoction of honey, whiskey, and lemon to soothe our sore throats and colds.  Did that crazy cocktail work because of the combination of ingredients, or because of Grandma’s love?  It didn’t matter; it just worked.

When we are young and healthy, we relish a great meal.  We take eating for granted.  But as we age, and particularly if we are sick or under prolonged stress, eating becomes difficult and even -- at times -- dreaded.  As we age, our taste buds regenerate at a slower rate, reducing our sense of taste.  Some of drugs and medical treatments used for cancer, epilepsy, Parkinson's disease, diabetes, and high blood pressure can make food taste strange (or just plain bad), thereby diminishing our appetites. Damage to the brain stem, thalamus, and cerebral cortex may also cause taste problems. 

When we are caring for someone who is ill, we will likely encounter challenges getting them to eat.  We may also struggle with our own nutrition: we may find ourselves not hungry, skipping too many meals, or eating overly processed fast food on the run.  Our goal – for our loved ones and ourselves -- is to ensure enough nutrition to meet the body’s intensified needs. Weight loss is often inevitable with certain disease processes, but it should not be inevitable for caregivers, who need to maintain their own health, strength, and energy to provide the care required.  

Three fundamental issues may need to be addressed before we can help a loved one or patient eat and drink.   Let’s examine the first of them today: 

Sore Mouths and Throats
Chewing and swallowing can be painful to those suffering from canker sores, thrush infections, dry mouths, and cracked or chapped lips.  The best approach is early diagnosis and immediate treatment with appropriate prescribed and over-the-counter medications.  You might also try: 

·         Moist and liquid-based foods, such as soups and stews, that are easier to swallow.

·         Soft, cold foods like ice cream, frozen fruit-juice bars, watermelon and grapes. These may feel and taste better than other (chewy, crunchy, harder) foods.

·         Using a straw to make swallowing water or beverages easier.  

·         Apple and nectar juices instead of highly acidic juices (like tomato and citrus) and carbonated beverages.

·         Avoiding spices. 

These simple adjustments can significantly ease mouth and throat pain … and make eating not merely tolerable, but enjoyable again.
 

Refreshing Our Homes

The smells caused by illness, infection, incontinence and many forms of treatment can quickly accumulate in our homes, and can permeate and linger.  These smells are complicated to manage each day, but can evoke particularly painful emotions after a loved one has died at home.

To alleviate these complications more easily, caregivers (and friends and helpers of caregivers) should consider:

·        As You Begin

o       Apply a thin layer of Vicks ® Vapo Rub ® inside your lower nostrils and under your nostrils to counteract odors as you work.  At the end of the day some odors may remain in your nose despite this, these odors will subside within several hours.

o       Wear old clothes that can be washed repeatedly or discarded if the smell is too pervasive. 

o       Wear gloves to protect hands from abrasive cleaning agents, objects that can cause injury, and clinging odors.

·        Ventilation

o       For most of us, the days after the loss of a family member are difficult and hectic.  Ensuring open ventilation is one of the most immediate and least-time consuming measures you can take to ease unpleasant smells in the home.  Open the windows for as long as possible; you may find that you must keep them open for days, or in extreme cases, weeks.

o       Install new filters in the air ducts (heating, air conditioning), preferably filter strips with activated charcoal or silica gel that will absorb the particles in the air and greatly reduce odors.  Promptly dispose of old filters.

·        Cleaning

o       Launder lines and towels as quickly as you can.  Try to avoid mixing them in the laundry basket with other items. Laundry may need to be washed twice, using bleach if possible in the first wash.

o       Launder clothes (including robes and pajamas) as quickly as possible, even if you plan to eventually pack them up and give them to local charities.

o       Clean kitchens/bathrooms with bleach.  Do not mix bleach and ammonia products as that will release toxic fumes.

o       Odors on furniture and small areas of carpeting may be neutralized with a pet deodorizer. 

o       When cleaning carpets, remember that odors permeate down to the floor padding, so both sides of the carpet and the padding should be cleaned. 

o       Odors also remain in walls.  Usually, these odors can be eliminated by washing the walls. If odors linger, a fresh coat of paint may be required. Using a primer will seal in any lingering odors.

o       When cleaning is complete, have someone who was not involved in the cleaning walk through the home to note if odors persist. 

·        Professional Cleaning

o       While this can be the most costly option, it is frequently the most effective.  Professionals who clean up after fires and floods are very familiar with how to eliminate locked-in odors; these professionals may also thoroughly clean the air ducts.

·        Removal

o       There are extreme cases where stains and odors are so locked into furniture, bedding, drapes, and carpeting that repeated attempts at cleaning do not help (and where it may not be cost-effective to call in professional cleaners).  In these cases, removal and replacement may be the only option.  This can also be the hardest option, particularly if it involves a cherished quilt, or a beloved couch. 

Most family caregivers understand that long after we’ve cleansed our homes of a smell, it may linger in our memory and be easily triggered.  Sometimes, these memories bring us joy (the memory of a loved one’s perfume); at other times, the mere smell of bleach or other cleaning products can trigger difficult memories.  The power of smell to permeate our memories and emotions cannot be underestimated.

Sense of Smell: A Brief Case Study

Caring for Charles was challenging in many ways; he was resistant to suggestions, changes in his daily schedule, and the need to move off his recliner.  Charles suffered from obesity, diabetes, open wounds, incontinence, and a fungal infection on the skin of his legs.  His health was a time bomb, heightened by so many complications.  

In addition to many predictable challenges, those of us who served as Charles’ caregivers had an additional hurdle to clear:  the overwhelming, sickeningly sweet foul odor when we opened the door of his home. We provided health aides to help with his personal hygiene and housekeeping.  His sister and brother visited on the weekends and tried to “freshen” the apartment by hanging dryer sheets and placing room deodorizers in each room.  He had clean clothes, towels and sheets.  The trash was removed every day.  The odor came from Charles himself and especially from the infections of his wounds and rashes.  Despite the wave of nausea that hit us as we entered his home, Charles’ wound and skin care had to be done daily.  

We found a very simple coping strategy:  by applying a thin layer of Vicks ® Vapo Rub ® on the inside of and under our nostrils just before entering his home to provide care or visit, we could counteract the bad odors without affecting Charles. After leaving Charles’s home we would use a light air-freshening spray (like Febreeze ®) to our clothing as we did have others to visit.  We never did these activities in Charles’ presence because we did not want to embarrass him in any way.

(By the way, the next time you have to take a long flight, remember this solution!)