Change of Mind, Change of Heart

Perhaps you have a friend who has gone through crisis and has an epiphany that alters the course of her life.  After her father’s death, Julie realized she no longer wanted to practice law; she took herself off the type-A track and now makes and sells gorgeous pottery.  After Phil lost his high-paying job, he found, to his astonishment, that “temporary” work in the local coffee shop not only allowed his family to remain in their home but renewed his spirits, his energy, and his health. 

One term for this life-altering experience is metanoia, which comes from the Greek word for changing one’s mind, but is often defined as changing one’s heart after a life-altering event.  Metanoia is also a psychological term; Carl Jung defined it as the spontaneous attempt of the pysche to heal itself after conflict and the process of being reborn in a more adaptive form.  For others, particularly those in the spiritual community, metanoia connotes our ability to turn ourselves around after a period of hardship, to face a new direction, to find new light and put old shadows behind us.

For caregivers, metanoia is the process and promise of finding deeper meaning and a new way of being even as we care for another in desperate need.  This process is a fundamental part of healing and renewing ourselves.

When we become full-time caregivers, we must recognize that life as we know it has changed, almost from the moment our loved one is diagnosed.  We will be faced with tough decisions, anxiety, fatigue, stress, and financial hardship.  Many family caregivers find their lives changing beyond recognition:  they no longer have the time, the independence, the energy, or the means to spend a casual Saturday at the mall or on the golf course.  A spontaneous weekend away is unthinkable.  Dinner or a long bath without interruption is a luxury of the past. And always, there is the gnawing uncertainty: “How will this turn out?  How much more will be required of me?  What will be left of me when this part of my life ends?  Will I be alone?  Will I ever know what normal feels like?”

These are not selfish or pointless thoughts.  These are the very ways our psyche and our hearts are trying to adapt to life-altering circumstances. 

Dr. Joan Boysenko, a licensed clinical psychologist who has written extensively on the mind-body connection, tells us that the change process we go through at times like these is very much a form of dying to who we once were.  We must acknowledge that we can never really return to the old way of life.  Even if our loved one heals completely, our inner beings – our very hearts – have been dramatically transformed by what we have gone through.  

Dr. Boysenko and other noted physicians and psychologists tell us that we can learn to transform our lives even while we are going through periods of deep uncertainty.  They tell us that we must begin by looking clearly at who we are now; what we need now; what we need to learn from this very experience; what we must do to survive and thrive; and what the meaning and purpose of our current suffering is about

Our ability to accept our new reality, to find meaning even in the darkest hours of our lives, and to be committed to a new way of being is key to our resilience.  These factors separate those who renew themselves after crisis from those who simply cannot.  From resilience springs resourcefulness, new life goals, and new ways of living.

If we think that metanoia is pop psychology, we would do well to think about Holocaust survivors.  Those who flourished -- like Viktor Frankl, the noted Austrian psychiatrist and survivor of four Nazi death camps -- were determined to make something positive out of the hard lessons they were learning as they were experiencing them.  They did not deny their circumstances; they did not immerse themselves in self-deluding optimism that all that was lost would be restored; they did not retreat into a past they could never again recreate.  Even in the hellish nightmare of Auschwitz, Frankl began writing seminars on resilience.  He lived to write give many such seminars and write many books, including the classic Man’s Search for Meaning.

The best we can do for ourselves each day is to accept the fact that our lives have changed; as a consequence and necessity, our hearts and minds are changing too.  Who will we be at the other end of this journey?  If we allow ourselves, we will be wiser, more resilient, more ready to find new ways of living, and more open to experiencing joy in simple things we had once taken for granted.

“What the caterpillar calls the end of the world, the master calls a butterfly.”  (Richard Bach)

Skin-Deep Skin Care

Our skin is far more than just the outer covering of our bodies; it is an organ just like the heart, lung, or liver. Besides providing a layer of protection from germs, injuries and radiation from the sun, the nerve endings in our skin makes us aware of the sensation of touch, pain and heat.  Our skin helps our bodies to metabolize the Vitamin D we get from sunlight that helps our bones stay strong.  Our skin helps regulate our body temperature when we shiver and sweat.  Perspiration also helps excrete body waste (salts). 

When an individual is confined to a bed, recliner or wheelchair for long periods every day, concerns arise about the condition of their skin. Special care must be taken to keep their skin good shape.  The best action is prevention:  keeping the individual out of the bed or the chair as much as possible and for as long a duration as possible.  It is much easier to keep skin intact than to heal open areas that may occur.  Skin breakdown is often referred to as bed sores, pressure sores/ulcers or decubiti (Dee-cube-it-eye)

Beds should be as comfortable as possible, but not too hard or too soft.  Creases that form in mattresses or bed linens can cause skin irritation and breakdown.  Mattress covers are good choices to protect the underlying fabric from damage caused by excretions.  Air mattresses, egg-crate or foam pads may be added to increase comfort.  It is important to keep the sheets clean, dry and smooth.  Fabric pads or synthetic pads often are used under buttocks, wounds or heads to prolong the use of sheets; they can be purchased through durable medical equipment (DME) suppliers, drugstores or large retail stores.  These pads and sheets need to be changed when they become wet or soiled.   

Positioning and repositioning an individual in a bed or chair is another key to keeping skin healthy skin.  Turn from side to side to back, or assist the individual to reposition himself every 2-4 hours.  Every time this is done it is important to look at the pressure areas:   heels, hips, tailbones, elbows, ears, and backs of heads.  Gentle massage of these areas helps to promote circulation to the region. Keeping an individual on their side is sometimes a challenge; use pillows or wedges to support their back, place a pillow between their knees and raise their heels off the bed by placing the pillow under their lower legs but leaving the heels off of the pillow. Avoid donut cushions because they can compromise circulation (blood flow) to areas.  Special cushions for chairs and wheelchairs can be obtained at your local DME company, but you usually need a physician’s order for insurance coverage.   Heels and elbows can be protected with foam or shearling protectors which can be purchased at drug stores or medical supply stores.

If your loved one uses oxygen, the backs of his ears need to be checked daily for skin breakdown.  The oxygen company can supply special ear protectors.  

If you are assisting your loved one with bathing or hygiene, use this opportunity to look for potential problems.  What appears as just a red area today can be a pressure ulcer in a few days for a bed- or chair-ridden individual.  Also check skin creases (under breasts, in abdominal folds) and feet (including between toes) for red areas or foul odors which can also indicate skin breakdown or infections.  It is important to respect your loved one’s dignity and modesty as much as possible during this process.  Cover areas with a thin blanket or sheet to allow for privacy and prevent chilling as much as possible; if you are bathing the upper body cover the lower body.  Using a mild soap with moisturizer is a good choice, many deodorant soaps are too drying.  Rinse the soap off the skin and dry well without aggressive rubbing. Applying lotion helps to moisturize the skin too but do not mix powder and lotion.  Clean off urine and stool as soon as possible; both can be caustic to skin.    

If your loved one has an intact blister or scab, do not open these areas as that could increase the risk of infection.  If you are applying antibiotic ointment to an area of skin, use a thin coat only as thick applications encourage bacteria growth.

If you see an open area that is not healing or shows signs of infection (redness, purulent [pus-producing] drainage, or foul odor); call the physician or your home care/hospice nurse.  Early detection and treatment can prevent further complications. 

National Bath Safety Month

Ten percent of those over age 60 have difficulty bathing…75% of slip-fall deaths happen to those 65 or older…there are an estimated 370 bath/shower injuries a day.

These statistics provide ample cause for declaring January National Bath Safety Month and increasing our awareness about how quickly bathing accidents and injuries occur.  If you are caring for a loved one (of any age) who is weak or has mobility problems, you know that bathing can be one of the most stressful parts of caregiving.  Those problems are compounded for elderly loved ones whose vision, balance, motor skills, and sense of touch may be decreased or impaired by age, infirmity, and some medications.

What can we do to make the bathing process less risk prone?

·        Stay close by throughout the bathing/showering process, offering all the help that is needed (and as much as an adult loved one will allow).  Home health aides can be especially helpful if your loved one resists your attempts to assist them.

·        Keep the bathroom door unlocked when your loved one is bathing/showering.  That’s a good rule of thumb for every family member, since all of us are susceptible to bathing accidents and a locked door impairs our ability to offer rescue and help.

·        Keep your bathroom as clutter-free as possible.  Provide as much as possible into and out of the shower and tub, keep clutter (including piles of magazines and newspapers away from the tub), and keep the number of bottles, jars, and soap bars inside the tub/shower area to an absolute minimum.  Consider everything near or in the tub a potential slip-fall hazard.

·        Keep your bathroom floors clean and dry, and encourage your loved one (and every family member) to wear non-skid slippers and socks in the bathroom.

·        Stow electrical devices away from the tub and sink.

·        Use non-skid bath mats inside and outside the tub/shower.

·        Set your water heater temperature of 120 degrees Farenheit, maximum.  Consider investing in a bath-water thermometer, but at the very least always check the temperature of the water before your loved one (or child) enters the water.  Some types of medicine and disease syndromes reduce finger-tip sensatory perceptions, making the risk of scalding greater

·        Use a transfer bench to help your elderly or mobility impaired loved one enter the tub or shower more easily, and use a shower or tub seat inside the tub.

·        Install grip-bars on the walls to increase mobility safety.

Physicians’ offices, senior centers, home health organizations, physical therapists, and pharmacists can suggest other helpful measures.  In the meantime, take a good look at your bathroom from a risk-spotting perspective, and develop a simple plan for alleviating those risks.

Walt

The first time I met Walt, I completely misjudged him. His responses to my questions were very slow and hesitant, as if he did not understand what was being said; his mood was flat.  I was there to try to teach Walt and one of his brothers how to give the daily intravenous medication he required since his last hospital stay for an infection.  His brother was very restless, talking nonstop, telling me repeatedly that he could take care of it all.  I was very concerned about how this situation would turn out.  I decided the best approach was to plan a visit daily to make sure all was going well with Walt’s treatment.

Walt had had a rough life; he suffered a head injury that left him with a seizure disorder and unable to work at the job he had held for years.  Times turned tough with a limited income and mounting health problems. Walt developed diabetes and had just recently been diagnosed with lung cancer.  

My course with Walt became a long one that lasted many months once he began the radiation and chemotherapy treatments.  Most people do not have both types of cancer treatments simultaneously, but he did.  We juggled problems with his nutrition, medications, diabetes, as well as living arrangements, transportation and financial concerns.  The time I spent with Walt was a learning experience for me, because he was an avid fan of old movies, especially those starring “The Duke” (John Wayne), and he would teach and quiz me during each visit.  He loved it when he could stump me.

Walt struggled through without complaint, often denying what was obvious to everyone  as his fatigue and weakness mounted.   Walt found God, and a lovely woman, Nadine,  who also lived in his low-income apartment building. Together they went to Bible study in the evenings in the community room, and when he was too tired the group would come to his apartment.  He loved the strength he found during these gatherings.  Nadine would check on Walt throughout the day; nudging him to eat, drink, and rest.  They made quite a pair, and I learned that Walt had a very dry sense of humor and loved to play jokes on others and to have others get one over on him.

Walt completed his radiation and was presented with a certificate from the staff at the cancer center: 35 consecutive treatments!  I loved the fact the staff celebrated this milestone with him, because he had become as dear to them as he was to me.  I bought a frame and together we mounted the certificate in his apartment.  He completed his first round of chemotherapy without further problems.  We all awaited the follow-up scan anxiously.  The news was great -- the tumor had decreased in size! 

Walt had to wait before the next round of chemo would begin.  I would now be able to discharge Walt from home care as he would be able to manage his own health care needs.  I knew I would miss our visits, his joke of the day, and his positive and calm coping skills despite many dark days. I delayed his discharge as long as I could, but rules are rules in the healthcare system.

About a week later, I got a call from the area EMS crew. They had been called to Walt’s apartment by a neighbor and my contact number was the first they found.  Walt was gone from us; they found him kneeling beside his bed, hands folded with his Bible in front of him. Walt’s passing had been swift; he had experienced a seizure and was gone. 

I continue to miss Walt and think about him every time I drive pass his apartment complex. His death was one of the hardest I have had to cope with in my more than 30-year career.  Maybe because I am older now, maybe because I realize how close any of us are to losing our ability to live our lives as we have planned, or maybe because once again I was reminded how quickly our earthly existence can be over.  Or perhaps it is because I came to know and cherish Walt as the good and wise soul that he surely was.

  

The First Radiation Treatment

When radiation therapy is the recommended course of cancer treatment, the most pressing question many patients and caregivers share is, “What will radiation be like?”  For most, the first treatment is the most intimidating:  we cannot imagine what it feels like, or how we will respond.

Radiation therapy is a highly effective, pain-free treatment option used to cure or control the spread of cancer, bring relief to symptoms including pain, and to improve the quality of life of a cancer patient.

Although no two treatment plans are exactly the same and no two individuals experience exactly the same side-effects, most patients find their introduction to radiation therapy manageable if they have a good understanding of what to expect – and if they prepare for it.

Radiation is delivered by one of three methods:

·         External radiation therapy involves the carefully precise use of a high-energy beam that passes through living tissue, aims directly at a cancerous tumor, and then exits the other side of the body. This type of radiation is always performed in hospitals or clinical settings where nuclear medicine is practiced.

·         Internal radiation therapy involves the careful and accurate placement of radioactive sources directly into cancerous and/or living tissue. Implantation of the radiation source is done in a hospital and may require several days hospitalization.  The therapy is determined by the type of cancer. Contact with pregnant woman and young children may be restricted for a few days or weeks.

·         Systemic radiation therapy involves the individual swallowing or receiving an injection of a radioactive substance, such as radioactive iodine.  Systemic radiation therapy is commonly used to help treat some types of thyroid cancer. Thyroid cells naturally take up radioactive iodine.  This type of radiation is always performed in a hospital and may require several days hospitalization. Some types of systemic radiation therapy may temporarily make a patient’s bodily fluids (such as saliva, urine, sweat, or stool) emit a low level of radiation. Patients receiving systemic radiation therapy may need to limit their contact with other people during this time, and especially avoid contact with children younger than 18 and pregnant women.

A patient’s doctor or nurse will provide more information to family members and caretakers if any of these special precautions are needed. Over time (usually days or weeks), the radioactive material retained within the body will break down so that no radiation can be measured outside the patient’s body.

Radiation kills cancer by damaging DNA, causing cells to die rather than replicate at cell division. Unfortunately radiation can also kill normal tissue, but normal tissue – unlike cancerous tissue -- is usually able to repair itself after treatment. 

In some cases radiation therapy may be used alone, but in other cases it may be combined with surgery and/or chemotherapy to achieve the best outcome.  Sometimes, radiation therapy is the last form of cancer treatment, following chemotherapy or other treatments.

Patients cannot see, smell, taste, hear or feel the radiation. Cancer radiation treatments are very similar to getting an X-ray. A small number of patients feel warmth or a tingling sensation in the treatment area, but they do not feel any pain.

Even though the effects of radiation are powerful, the patient will not become permanently radioactive. External radiation therapy affects targeted cells only for a moment, so by the time the patient leaves the treatment area which is usually less than thirty minutes the patient will not be emitting any radiation. With internal  and systemic radiation therapy, the patient's body may emit a small amount of radiation for a short time.  An individual’s doctor or nurse will provide more information to family members and caretakers if any of these special precautions are needed. It is very important to follow the instructions given by the health care staff.

Before external radiation therapy can be initiated, the treatment area needs to be precisely identified and marked so that the radiation technician can pinpoint the radiation. This process is time consuming because precision is essential, and many individuals complain of fatigue because of the time and positioning that may be required.  Usually, treatments are not started on that same day. Yet time invested at this stage allows all subsequent treatments to proceed more smoothly, because the technician can line up the treatment fields quickly.   

To mark radiation treatment areas, most cancer centers use tattoo markers, but some may use a felt-tip marker similar to the ones you may have in your desk. Tattoos are much more precise than felt-tip markings. The tattooing process feels like a pinprick and is much less painful than having blood drawn.  The tattoo lines are permanent. The benefit of the tattoo is that during the course of treatment, it will allow you to take showers or go swimming without worrying about having the marks disappear.  Whatever form of radiation marking is used, it is very important to follow the skin-care instructions the radiation therapist provides. 

With radiation, many patients have no side effects at all.  Those who experience side effects find that they vary depending on the treatment dose, the part of the body that is treated and the patient's general health before treatment.  As with chemotherapy, it is very important to begin and maintain good health while undergoing radiation therapy:   ample rest, adequate nutrition and avoidance of infections.

The First Chemo Treatment

From time to time, I’ll share some of the most frequently asked questions I receive because I’ve found that so many of us share the same concerns.  I hope you’ll add to this dialogue.

When chemotherapy is the recommended course of cancer treatment, the most pressing question many patients and caregivers share is, “What will chemo be like?”  For most of us, the first treatment is the most daunting:  we cannot imagine what chemo feels like, how we will respond and how our loved ones will react.  If we take our cues from TV or movies, we might imagine that the first chemo is dramatic – one suddenly goes bald and is confined to bed, with a team of worried doctors and nurses hovering nearby.  

The reality of most chemotherapy is far less dramatic and far more manageable than these hospital dramas would have us believe.  Many patients remain independent and active throughout the course of chemotherapy; a great many patients continue working during chemo.  Treatment schedules generally become predictable and after-effects can be anticipated.

Although no two treatment plans are precisely the same and no two individuals experience precisely the same side-effects, most patients find their introduction to chemotherapy manageable if they have a good understanding of what to expect – and if they prepare for it.  An individual’s experience throughout chemo will be affected by several things, including his general level of health before beginning treatment, and especially how well he protects his health during treatment.  In all cases, the chemo will progress more smoothly if patients and their caregivers ask the physician and nurse what to expect.

Some patients receive chemotherapy treatments by regular appointment in clinical settings, such as their oncologist’s office, an out-patient clinic, or a cancer treatment center.  These settings are more often like your living room than a hospital room, with patients situated in comfortable recliners.  Patients read, nap, do needlework, watch movies or TV, and chat with friends and fellow patients while undergoing treatment.  Family caregivers may be able to stay with your loved one throughout each treatment.  Some patients receive chemo through port or catheter implants;the port is round and disc-like that allows easy access via a single needle stick, the catheter is a soft, thin tube that  that allows health care professionals to draw blood and deliver chemotherapy drugs into a vein without having to insert an IV needle each time.  Some patients receive chemo by injection; others receive it by an oral dosage. With some cancers, topical or implantable chemo is required.  Caregivers, especially, should ask medical staff specific questions about how to manage each form of chemo; healthcare professionals can give you detailed instructions, for example, about how to clean chemo infusion areas and to recognize any signs of infection.

Chemotherapy battles cancer cells progressively, which means their side-effects are progressive as well.  But some symptoms may be experienced – and controlled – right from the start.  Physicians may administer chemotherapy resistance testing before chemo begins to determine the right mix of drugs for the individual’s particular form of cancer.  Medications can be prescribed pre-chemotherapy to control symptoms that may occur during infusion.

One of the most noticeable first side-effects is fatigue.  Caregivers should expect their loved one’s energy level to drop.   Your doctor should be able to help you gauge when the fatigue level will be highest, although most patients learn very quickly when their energy will ebb and when it will revive, and they plan their lives accordingly.  Plan to provide rides to and from chemo treatments.   Encourage your loved one to get as much rest as possible before the first treatment, and as much rest as needed throughout treatments. 

Nausea is one of the most dreaded symptoms of chemo.  Enormous strides have been made in curbing chemo-related nausea.  Some patients will experience nausea right from the start; some patients will never experience it.  Anti-nausea medications are widely prescribed, and you should discuss these options with the physician before treatment begins.  Patients can help themselves by limiting meal sizes and by avoiding foods (even old favorites) that now upset their stomachs.  Many patients find that the taste of their favorite foods changes during chemo; that certain smells (food, cologne, coffee) have a strongly negative effect on them during chemo; and that their appetites change too.  Small, well-balanced, frequent meals are usually the best course.

Pain in the bones is another common occurrence, and some patients will feel it from the start.  Physicians can take some active measures to control your pain and manage these side-effects.  Your loved one may need to limit certain kinds of exercise as a result, but exercise during chemotherapy is possible and important.  Ask your physician before your loved one undergoes any sort of deep-tissue massage.

Hair loss – perhaps the most visible manifestation of chemo – occurs for some patients, but certainly not all.  Most hair loss occurs within two weeks of the first treatment.  Your physician or  staff can help you predict whether hair loss is likely and recommend  salons that might help your loved one manage the effects of partial hair loss, or direct you to companies that provide comfortable wigs.  (Be prepared that these wigs are not cheap, so check in advance if your insurer will help you with costs.)  When hair loss is expected, many patients find it simpler just to have their heads shaved before treatment begins.   Some patients are emotionally prepared to lose the hair on their head, but have not contemplated losing hair elsewhere, such as their eyelashes.  Knowing what to expect will help you and your loved one adapt.

It is very important to note that the absence or presence of a side-effect has no bearing on how well the chemo is working.

You should expect to make some adjustments in your routine from the start of your chemotherapy.  While most chemo patients are not confined to their homes or hospitals, they will be encouraged to avoid crowds and crowded places (especially during the height of flu season).  Their immunity will be   lowered, and doctors will want them to stay healthy so that treatments are not interrupted by flu or colds.  Caregivers and their loved ones should get in the habit of carrying hand sanitizers (which is a good measure for all of us).  Some normal grooming habits may need to be adjusted or temporarily suspended (such as manicures, pedicures).  There may also be restrictions on eating fresh fruit and vegetables or contact with flowers and plants during the course of chemotherapy.

While plenty of what-to-expect online resources exist, the best method of preparation is to compile a list of your specific questions and ask your physician.

No Man (or Woman) Is an Island

What happens when a patient has no one to go home to – either by choice or by chance? 

Loneliness becomes much more common as we grow older.  We retire and often lose a huge part of what defined us.  Our children have grown and moved across the country. Our partners and old friends die. Health problems leave us unable to do the things that brought us enjoyment in the past.  Our vision diminishes and our reaction time slows.  Our mobility becomes limited as driving a car is not only dangerous but the upkeep is costly.   Consequently, we are increasingly alone.

Social isolation has a significant impact on our physical and emotional well-being.  Men are at a higher risk than women of isolating themselves from others.  Many men make their occupations the focus of their lives, and their social contacts are often work-related.  Women have a tendency to have wider circles of contacts; work, church, social, their children’s school and community contacts.   

Studies now indicate that isolation has health risks comparable to smoking, obesity, inactivity and alcohol abuse.  We know that these behaviors lead to an increased risk of heart disease and strokes.  Research has now shown that social isolation carries the same risk:  50% of heart patients who are loners die in 5 years after a cardiac event, compared to 18% of those who have the support of family and friends.

Isolation can also increase the risk of depression, insomnia and a faster progression of dementia.

On the other hand, a good social network of family and friends can actually improve health.  Physicians now agree that that they can see a difference in a patient’s response, healing, and mood when they are cared for and touched in a loving way.  It has also been noted that a doctor’s reassuring touch, pat on the shoulder, or touch on the arm are important elements to encourage healing.  The patient who feels love and cared for improves.  Companionship also decreases stress levels and often leads to improved health habits.

A recent example of the power of touch is the recovery of Representive Gabrielle Giffords; her husband was a constant presence at her bedside, holding her hand; Gabby  responded by touching his wedding band and rubbing his neck even before she opened her eyes. 

   

Knit 3, Purl 3, Pray

“Shawls … made for centuries universal and embracing, symbolic of an inclusive, unconditionally loving God.  They wrap, enfold, comfort, cover, give solace, mother, hug, shelter and beautify.  Those who have received these shawls have been uplifted and affirmed, as if given wings to fly above their troubles..."   Janet Bristow
 

It had been many decades since I had picked up a pair of knitting needles when I decided several years ago to make prayer shawls as Christmas gifts for my mother and sister.  As I gathered the needed items, I was more than a little overwhelmed with the task at hand- Could I do it?  Would they be done in time?  Would they turn out anything like the picture?  Would my mother and sister like them? 

I sat many evenings that fall; knitting and praying.  I found such comfort in praying for each of them in turn as I finished first one shawl then the other.  My shawls were far from perfect but my prayers for them came from a sincere and loving heart.
 

The Prayer Shawl Ministry was started in 1998 by Janet Bristow and Victoria Galo, two graduates of the 1997 Women’s Leadership Institute at The Hartford Seminary in Hartford Connecticut.  The shawl maker is instructed to begin each knitting session with prayers, special intentions and blessings for the recipient.  These prayers may continue as progress is made in each sitting. Upon completion of the shawl, a final blessing should be offered before sending the shawl on its way.  Prayers, compassionate thoughts and the love of knitting combine to reach out and embrace those in need of comfort and solace, as well as in celebration and joy. 

With more winter ahead of us, perhaps using your hearts to create, your hands to knit and your prayers to heal will bring you and your loved one a unique gift to share.  Get more information at www.shawlministry.com.

Music to Soothe (and Rock) By….

Can music really promote healing, recovery, and overall well-being?  An increasing body of medical and sociological evidence suggests it does. 

Alfred Tomatis, M.D. -- hailed by many as the father of music therapy -- developed the theory that music is energy food for the brain and an instrument of healing.  He used Mozart and Gregorian chants to helps patients suffering from ailments as different as dyslexia and depression.  Many healthcare providers recognize music’s restorative powers, often combining it with movement and dance classes, even into the end stages of life.  Hospitals like Exempla Good Samaritan Medical Center in Colorado have created entire soundscapes – from chirping birds to jazz – to uplift, comfort, and de-stress patients, visitors, and staff.  (I’ve rarely been in a surgical suite where music wasn’t a vivid presence.)

Yet in their never-ending list of things to do, caregivers might feel overwhelmed at the thought of creating a soundscape soothing enough to promote recovery or well-being.  We might believe that we’ve got to invest in a collection of nature sounds, liturgical hymns, or Celtic or classical music in order to achieve therapeutic benefits. 

Nothing could be further from the truth!  Patients at all stages of illness want the music that mattered most to them – the soundtracks of their lives, which is quite often the music you already have at home.  They don’t want Muzak, or someone else’s opinion of “soothing” music.  My Uncle John – well into his 80s and battling too many physical challenges – continued to add to his stereo equipment so he could blast out his beloved Big Band sounds.   Those were the sounds that cheered and motivated him in his final months and brought joyful memories to all of us.   My Uncle Frank loved the soundtrack of My Fair Lady.  He insisted we play it whenever he visited our house, and it was the music we played at his memorial service, instead of the usual hymns.  (We didn’t care that some guests raised their eyebrows when they heard “Get Me to the Church on Time” because everyone smiled when they heard the timeless and lovely lyrics of “On the Street Where You Live.”  It helped us remember that Uncle Frank was an incurable romantic.)

We all have highly individual taste, but chances are you already know the music that will be therapeutic to your loved one.  Don’t be afraid to honor his choices by playing R&B, the oldies, hip hop, or reggae.   You might be surprised by how quickly it transports your loved one – and you – to another time and place.  

Sometimes, the best way to “heal” the heart – especially when recovery is not possible – is to crank up the music and rejoice.

So what’s on your playlist?

More Than the Winter Blues

All of us are susceptible to feeling especially gloomy on a dull, rainy day, but what if you are experiencing feelings more severe than that?  Do the shorter, darker days of winter find you feeling depressed, unable to lift your spirits or motivate yourself, moody, emotional, eating and sleeping more, and generally retreating into hibernation?  If so, you may be suffering from Seasonal Affective Disorder (SAD), a type of depression that begins in the fall and gets better in the spring. 

These unique time-specific symptoms distinguish SAD from other types of depression. SAD is directly related to the decrease in sunlight during the winter months because the body’s internal clock is disrupted.  It is most common in women and often affects more than one member in a family. 

While we cannot all escape to Florida or Arizona for our daily dose of sunshine, we can try some simple things to improve our moods.  Getting more natural light every day is a good start; sit near a window in your home and take a walk outside on clear days.  Exercise can also elevate your mood.

If the symptoms are severe enough to affect your daily life, prevent you from routine functioning, or last more than 2 weeks, see your doctor.  He or she may prescribe anti-depressant medications, therapy, or “light therapy” which involves a special lamp or light box to boost your exposure to bright, artificial light.  

No matter which remedies you pursue, remember that spring really does come.

Slip Sliding Away

The weather forecast through large portions of the country contains those dreaded words:  snow, ice, sleet, slush.  If given the choice, most of us would prefer to avoid these weather elements.  But each of us could have reason to venture out during bad weather:  we may need to run to the drugstore, to the doctors, or to the emergency room with an ill loved one.  How can we reduce the risks of slipping and falling on ice?  

Prepare as much as possible in advance:  

·        Don’t go outside without the right footwear.  Boots or overshoes with rubber or rough soles are essential; ice grips or ice cleats can be cheaply purchased as most sporting good stores to make our boots even safer.  Do not attempt to navigate snow or ice on high heels or smooth-surfaced shoes – even if you think you are walking only a short distance on your own driveway.

·        Don’t wear head coverings or scarves that restrict your vision.

·        Wear gloves, not only for warmth but they are an extra layer of cushion for your hands.

·        At the first signs of ice, put down salt (which melts ice) or sand, gravel, cat litter, coal-stove ashes, fertilizer or other abrasives that can give traction.  Keep a container of these products near your door.  When a friend or neighbor asks how they can help, ask them to spread a generous layer of these products. 

·        Ask for help with shoveling snow as soon as possible, before it packs or becomes icy.

When you must go outside:

·        Walk deliberately – “penguin-style.”  Stand as erectly as possible and look a few steps ahead; pick up your feet and take short, deliberate, flat-footed steps.  Don’t attempt your normal stride, and never try to run.

·        Keep your hands out of your pockets as you walk!  Walk with your hands at your sides, slightly away from your sides. 

·        Don’t walk with heavy packages – including grocery bags – that can be destabilizing, obscure your line of sight, and cause you to lose your balance.

·        Be conscious that ice can accumulate anywhere, but is far more likely to build up in shady areas or at the edges of buildings.  Be alert for overhead hazards like icicles as well as water pooling and forming ice from gutter run-off.  Be aware that a solid layer of ice can build beneath or on top of snow. 

·        Turn on your porch lights after dark, so you can more easily detect icy sheen on snow, sidewalk, or driveways. 

·        Be aware that even snow-free walkways can be dangerous, due to “black ice,” the transparent, icy glare that can build up even when there is no apparent snow or slush.

·        Avoid walking in the street if at all possible, remember cars and trucks can slip and slide too.  If you must walk in the street, wear bright, reflective clothing.

If you fall:

·        Most falls feel so sudden we don’t think.  Try to keep your wits about you.  We can control ourselves, but we generally have seconds to prepare ourselves.  Breathe out to relax your body, try turning to the side or go into a “dip” position. Keep your arms extended; don’t try to break your fall with your hands.  Keep your head up, turn it to the side if falling forward, put your hand behind your head or chin to your chest if falling backward. Breaking your fall with your arm or hand may result in a fractured arm or wrist but that is better than a head injury or fractured skull.

·        Don’t delay seeking medical attention if you ache.  Don’t assume you didn’t break anything or that it’s a normal “throb.”  Not all fractures show outward signs of deformity or swelling.  A small bruise for individuals on blood thinners can be hiding a deep internal injury.

Medications, Part 2

Medication safety can never be overrated.   I have seen medication “organizing systems” that have left me wondering why bad things have not happened to the individuals involved!  Here are some additional tips that I hope will prevent potentially deadly mistakes:

• Read each medication bottle carefully before preparing to give or take any medication.
• Do not write over labels on the prescription bottle.
• Do not write the name of the medication on the bottle caps/lids, as the wrong cap may be accidentally replaced on the wrong bottle.
• Secure the lids on all medication bottles; request non-childproof lids from your pharmacy if opening the lids is difficult.
• Store medications securely in bottles; never allow them to lie loosely in the home where small children or confused individuals could mistakenly swallow them.
• Do not mix a variety of medications in one bottle.
• Keep each individual’s medications separate.
• Store discontinued medications securely in a separate area of the home.

                          

Ordinarily, I encourage caregivers to devise organizing systems that work best for them, but not when it comes to medication.  In this case, these standard safeguards must apply: 

• Never attempt to track whether an individual has been taking his/her medication by relying on the “bottle right side-up/bottle upside down” system, or by changing the location of medicine bottles on shelves or counters.  Both of these systems are too prone to chance, error, or indiscriminate handling to be safe and effective.
• Instead:  use a multi-day/multi-dose pill box (with separate compartments for AM/PM or breakfast/lunch/dinner/bedtime).  These boxes can be purchases at local drug or grocery stores, and some home care/hospice agencies or insurance  companies may provide them at no cost. The larger boxes are easier to open, easier to prepare and hold a larger number of pills.  Less commonly available but also very effective are auto-dispensing medication containers that sound a reminder alarm.

• When preparing medications, I recommend finding a quiet time without interruptions, creating a clutter-free work space, and having all medication bottles in front of you.  This will allow you to more carefully and systematically fill the pill boxes.
• If you have been keeping a comprehensive medication list, use it as a check system against the medication bottles.  Check each label carefully! 
• If changes have occurred during the week, make sure the pill container reflects those changes.  (Count pills per day, if necessary.)
• If you are having problems organizing and/or remembering to give the medications as prescribed ask the doctor for help; arrangements can be made for a home care agency to come to your home to assist you.  There are also senior services in many regions that can assist you. 

The goal of any medication system should be safety and simplicity.   Consider the possibility of another caregiver having to step in suddenly to administer medications on your behalf:  Would the new caregiver be confused?  Would he be able to follow the medication system you have established without interruption? 

Medications come in many forms:  pills, ointments, patches, liquids, suppositories and injectables. 

• Inform the doctor if the current form is not working for your loved one; for example, if they are having difficulty swallowing pills.
• Do not crush any medications without first checking with your doctor, home care/hospice or pharmacist.  Do not “hide” medication inside food (as you might with a pet) without checking with your doctor or pharmacist.
• If doses are missed, inform your doctor or nurse. Do not double-dose unless instructed to do so.
• If unable to take the medications as prescribed, notify your doctor or nurse.
• Notify the doctor or nurse if you begin to experience side effects.

What questions or concerns do you have?

Medications, Part 1

How does this medication work?  What are its possible side effects?  Is there any danger in combining this medication with my other medicines?  Will this new prescription interact poorly with my diet?  How do I administer this new drug?  

Questions like these are among the most common concerns for caregivers.  While each medication regimen is unique and has unique implications, I would like to share some of the general guidance I have given patients, caregivers and my own family members:

• Read each medication bottle carefully before beginning any new medication.

• Learn both the generic and brand names for the medications your physicians prescribe. Sometimes a physician or insurance company will prescribe the generic medication as a cost-saving measure.  If you are not aware of the generic name, you may be at risk of inadvertently double-dosing the medication.  (For example, Ibuprofen is the generic name for the brand-name drug Motrin; Warfarin is the generic name for the brand name drug Coumadin.  It would be very dangerous for a patient to take both Coumadin and Warfarin.)  If you are confused, ask the doctor or pharmacist for clarification.

• Check the label every time you receive a prescription and again when you prepare the medication for your loved one.  Many medications have similar names but very different actions on the body.  An example is Zantac (for stomach problems) and Xanax (for anxiety); another is Celebrex (for arthritic pain) and Celexa (for depression). 

• Read the label for the dose (strength) of the medication, how often it is to be given and any other special instructions (such as “take with meals” or “take only as needed.”)  Medication labels also provide instructions regarding possible interactions with food, other medications or environmental factors.        

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• Make a list of all medications being given to your loved one.  It is important to list the medication by name(s), dose, how it is to be given (by mouth, applied to the skin, as an injection), when it is to be given, and what it is for.  Double check this list for possible errors.  Revise the list any time there is a change in medication.  If you have home care or hospice nurses and therapists coming to your home show them your list.

• Take all medications with you to each physician’s visit, because one doctor may not be familiar with the medication another doctor has prescribed.  If you are using a mail-order pharmacy as well as a local pharmacy, the local pharmacist should also review all the medications every time any change occurs, and at least annually to avoid potential errors or serious interactions between medications. Bring the actual medications to the physicians and pharmacist unless specifically instructed by them not to bring the containers to the visit.

• Review the use of any over-the-counter (OTC) products -- such as Tylenol, Advil, vitamins, herbal supplements – with your doctor before your loved one starts using them.  OTC products are medications, too, and can cause serious side effects or interact poorly with prescription medications.  Advise your doctor if any problems have occurred since usage began and if the medication was stopped.   

• Take all medications that are currently being used to the emergency room if a visit is required so that the ER staff has an accurate list of the medications being used.   Take the medications back to your home. The hospital staff will administer all medications the doctor has ordered.

• Pay close attention to the medication list provided when your loved one is discharged from the hospital or any healthcare facility.  Prior to discharge, you receive a list of all medications that are now to be given to your loved.  Do not assume that the doctor wanted your loved one to restart any previous medications unless they are specifically named on the new list. If you have questions, call the doctor for verification before giving any medication not on the new list.  And remember to update the medication list with new medications and changes to previous medications. 

To be continued…..