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!)

Sense of smell

As we age, all our senses diminish to some degree.  The sense of smell usually fades but does not completely disappear.

Smells fall into 3 broad categories; good, bad and strange.

Hmm, what smells good to you?  Apple pie, cinnamon rolls, chocolate brownies, coffee??  Smells can certainly entice an appetite. This may be especially effective with the elderly or a busy caregiver, bringing back memories which could have the desired effect of getting a bite or two into a fussy eater.  

Tempting smells can just as easily cause nausea.  Remember being a coffee addict until you got pregnant? A simple whiff could send you running for the nearest bathroom. The individual who is ill may have the same response.  

Flowers and perfumes can also have either effect.  It is best not to provide care or visit wearing heavy perfumes or lotions.  Massaging a loved one with an overly fragrant lotion should be a pleasant, comforting experience not one that results with nausea or a coughing spell.    

Some “bad” odors are simply unavoidable; these are usually related to spoiled foods, old trash, body odors, products of elimination, vomitus, and infection. It is best to prevent or control the cause of these smells instead; good ventilation, removal of the items causing foul odors as soon as possible, cleaning up spills and using activated charcoal products to control odors. Covering the odors does just that and the mixture of smells is often worse than before.  When trying to remove offense odors care should be taken not to use strong smelling cleaners, such as heavy scented detergents, or bleach.  Strong smells may result in respiratory irritation, headaches, nausea, vomiting, or loss of appetite. Heavy air fresheners, perfumes and candles can be as reactive to the individuals in the home as the odor itself.
The use of candles should be avoided in homes where oxygen is in use to prevent the rapid spread of fire.
 
Strange odors are those not familiar to you, usually related to cooking spices.  If the individual and their family are not bothered by the smell, it can usually be tolerated for short intervals by visitors. 

When Touch is All

A second caregiving case study about the power of touch to bring comfort and peace.

After collapsing at home, Alvin was rushed to the ER, with his wife and family close behind.  By the time the family arrived, life support measures had been initiated, he was on a ventilator to support his breathing, and many IV infusions to support his heart function.  Alvin remained unresponsive. 

He was brought up to the CCU when he was stable.  I would be his nurse that night.  We quickly got him settled into his room, attaching him to even more monitors and infusion pumps for his IVs. The ventilator hissed at the head of his bed, and paperwork littered the bedside table.

His wife, Mary, slowly followed this procession with her grown children and waited patiently in the waiting room for the doctor to speak with them.  A few minutes later, they were standing in the hall beyond the CCU doors.  Mary was very small and frail- looking; she was 93.  Alvin was 95.  They had made the extraordinarily difficult decision to stop all life support and allow Alvin to die as peacefully as possible, if that was what was to happen.  He had been generally healthy until this event but his family knew that he would have never wanted to be attached to all this equipment, or to be limited in what he would be able to do if he miraculously recovered.  They were informed by the doctor that he would not survive without the support he was now receiving.  They signed all the releases required. 

The respiratory therapist and I went into his room and removed the ventilator, the breathing tube, and the IVs.  We muted the monitor.  The family then came in to say their goodbyes, to hold his hand, to pray together.  As they began to leave the room, Mary turned to me and said softly but with determination, “I have spent every night for the last 75 years next to that man. I want to be beside him tonight, too.”

The therapist and I looked at each other; neither of us had ever had a request like this before.  We asked her to give us a few minutes with Alvin first.  We gently moved him to one side of the narrow hospital bed.  Mary said good night to her children as they returned to the waiting room.  I helped Mary climb up into the bed and settle beside her husband of 75 years.  I drew the curtain closed and left the room.

I checked on them often, their bodies spooned together; both appeared to be sleeping soundly, Mary’s arm protectively across Alvin.  Over the next hours, his heart rate slowed and finally stopped.  I quietly entered the room and woke Mary to tell her Alvin was gone.  She kissed his cheek and stood up from the bed, leaving the room with the doctor beside her to tell the children.

My technical skills were not tested that night.  My humanity was.  The only thing I could do for this dear couple was to honor Mary’s wish to spend this last night holding the love of her life.

 

Using Our Senses

After writing about the importance of listening, I feel inspired to share thoughts about the role other senses play in caregiving. The sense of touch is essential and I’d like to share a couple of caregiving cases to illustrate the difference it can make. Here’s the first:

Bernard always greeted me with a warm, wide smile and soft greeting; his first words were of concern about how I was doing. Bernard was slowly dying of ischemic heart disease. He had been on our cardiac care unit for several weeks, hoping and praying for a heart transplant to save his life. I was responsible for his care on my shift so I had been monitoring his decline each day since his arrival. Bernard had been a mail carrier for decades; I can still hear him telling me with a sad, soft chuckle and tears in his eyes that he would never live long enough to collect his first retirement check. I was afraid he would be right.

Then one night, his condition started to decline suddenly. We relocated him to one of our larger rooms because more space was needed for all the equipment we were now using. My shift was over but Bernard was unusually restless and I didn’t want to leave him. I sat quietly at his bedside for some time, caressing his forearm gently, hoping to soothe him. Finally, he reached over and took my hand and held it in his. My hand was warm and his was cool and dry. We sat in silence holding hands for a few minutes. He looked at me with moist, soft eyes and said, “It is time for you to go home now.” I said I would leave in just a bit, but he repeated it with more strength in his voice. I stood up; and said goodbye with tear-filled eyes. I released his hand from mine.

Bernard died shortly after I left; he chose to be alone.

Touch is healing, physically and emotionally. It allows us to comfort and bring peace and pleasure to those we care about. I have always held the hands of those who are sick and dying. I have always hugged and supported loved ones. I always will. (Contrary to the myth that health care professionals maintain “objectivity” by putting distance between themselves and their patients, the more experienced a healthcare provider becomes, the more she or he learns to rely upon the restorative power of a gentle touch.)

Often, the individual who is ill is surrounded by wires and tubing, noisy machines and beeping monitors. Family and friends want to touch but are intimidated by the equipment, they are scared they will hurt their loved one or will disturb the equipment. Because of my own feelings and experiences, I try to rearrange things in the room to open an area for family to come closer, I try to reassure family members that they will not hurt their loved one and that they might all feel better if they hold hands.

I encourage all loved ones to ask the health care personnel if they can touch a hand, an arm, a cheek. I always hope that the answer will be yes.

Listening for Caregiver Solutions

Listening is perhaps the most expedient way to detect and resolve caregiver dilemmas.

Edie was not a happy person when I entered her home for the first time; she felt “everyone was making way too much fuss over a little thing.” Her physician had ordered home care nurses to visit her after her hospital stay because she had episodes of dizziness and falling. Edie had been recently diagnosed with an irregular heart beat and required new medications. Recently, the grandson who lived with her had married and moved out of state, so she was alone in a big, empty house. Her son, Bob, lived in a neighboring community and visited her daily before and after work. He wanted his 90-year-old mother to move in with his wife and him, or at least to move into a nearby assisted living facility. Edie would have no part of this: she wanted to remain in her own home and she didn’t want to interfere with his lifestyle.

Yet as each day progressed, Edie’s preferences were becoming less and less achievable, and the stress was taking a toll.

In just a few visits with her, I could tell by listening to her conversation that she was scared to be alone but unwilling to give up control. She could no longer manage the stairs to her bedroom at night so she slept on the recliner. She was having difficulty reading her medication bottles so she rewrote the names and times she should take them in large, black marker over the label, but this was a challenge for her to maintain. She was skipping her mid-day breathing treatments because she could not manage all the steps needed to set up her equipment – yet she was telling her son she had done them. She called the police several times a week after dark because she was sure someone was trying to break into her home.

Bob was doing the best he could: juggling a full-time job, his own home and family, and the new responsibility of daily visits to his mother. Some days he didn’t know where to turn, what short-cuts he could take, and how long this balancing act could continue. He was stopping in at Edie’s at 4:00 a.m. on his way to work, only to find Edie asleep on the recliner. He would quietly set up her breathing treatment and leave. Edie would call him several hours later to see when he was coming, having no awareness of his pre-dawn visit. Bob would stop on his way home in the late afternoon to check on her, and set up the evening treatment. His time with his mother was always hurried, little conversation between them occurred, and neither he nor Edie felt these were good visits.

By listening to both Edie and Bob describe their daily routines and stressors, I was able to develop several simple solutions that would make life easier for everyone. First, we got a pill box to organize her meds; Bob would have to refill it weekly, but this would greatly reduce the chances of missed or wrong doses. Second, we set up an area life-alert system so that she had easy access to emergency services. And third, by listening to Edie’s description of her neighborhood, we discovered a tremendous resource in close proximity: her neighbor, Sam. Sam had spent the last few years caring for his own mother. After his mother’s death, Sam found himself at loose ends. A brief conversation between Edie and Sam led to Sam deciding he would like to check on Edie daily. Every day around noon, Sam stopped over and had a cup of coffee with Edie. They would chat, and he could then he would check her blood pressure and set up her mid-day breathing treatment. Often, he would shop for her if he was heading to the grocery store himself. The change in Edie’s comfort level was amazing: she began to enjoy being “single” again, laughing and telling stories about her life. Her sense of loneliness and fearfulness greatly diminished. And Sam blossomed again in his caregiver role.

These simple adjustments answered the prayers of everyone involved. Edie maintained independence, giving her son a bit of relief and more time to look into long-term solutions that would better meet all their needs. And Sam felt needed again.

When we listen deeply to the individuals involved in a caregiving relationship, we can more fully assess the specific dynamics of their situation and more readily identify effective solutions. By listening with the intent to care, we gain a diversity of viewpoints that improve overall patient care.

Caregiving is never easy, it is never perfect, it is always a juggling act. But when individuals feel that their views are heard and respected, it can renew their sense of independence and self-control.

Are You Still Listening?

Recently, I shared a caregiving story about listening. Today I read something interesting enough to make me want to stay on this topic. Did you know that an estimated 45 percent of a typical workday is spent listening? I’m willing to assert that about 65 percent of a caregiver’s day is spent listening.

Listening is as important a tool in caregiving as providing meals and meds. Listening can improve the quality of care we provide, it can calm anxiety, and it can lead to important discoveries. Yet listening with the intent to care does not always come easily or naturally. When we have too many responsibilities, we can find ourselves short-cutting our listening time. We may find ourselves distracted, defensive, or impassively hearing, without truly understanding. All too often, our minds may wander to what we have to do next (or what we want to say next, when it’s our turn.)

So let me share some of my personal ideas about listening as a caregiver, to caregivers:

• Listening in an active and interactive art. When we listen actively, we are listening with genuine interest, and for genuine understanding. We are actively looking for meaning in what we are hearing. We might even paraphrase or restate what we’ve heard before we attempt to respond.
• Be fully present in your listening time with a caregiver. Be prepared to block out distractions – including your own voice. If you want to listen, you have to be prepared to stop talking! That includes turning off your inner monologue (the nagging internal voice that says stuff like, “Wow. How long is this going to take?” or “I’ve heard all of this before.”) Turn off the TV, radio, and computer. Close the door and be alone; caregiver to caregiver, caregiver to loved one. Create a listening space.
• Listen with your eyes. Respectful listening requires steady, focused eye contact on the speaker. When we listen with our eyes, we can pick up important caregiver cues that help put the message in context—is the speaker returning our gaze? Is he smiling? What is his body posture? Good listeners – like good caregivers -- telegraph respect by maintaining full eye contact. Think about the last time you saw a doctor or nurse who was busier recording notes on a chart than looking at you as you described your symptoms. (Core truth: the moment the listener looks distracted, the speaker starts to shut down.)
• Listen with your heart. If we are listening with the intent to care, we are withholding judgment. We are listening with the express purpose of understanding, caring, and helping. That means we don’t interrupt the caregiver to point out holes in his logic; we don’t expect a distressed caregiver to offer us coherent sentences; we don’t counsel the caregiver “not to worry about that.” Our goal is simply to achieve shared meaning and offer empathetic support. We accept what the caregiver is saying and feeling – not what we think they should be saying and feeling.
• Concentrate on emotional language. Can you discern what the caregiver is feeling as she speaks? What does her tone convey? Is she emphasizing certain words, or avoiding other words? Is she sighing repeatedly? The most effective listeners pay attention to what is being said, how it is being said, and what is not being said.
• Highly evolved listeners have a secret ingredient: silence. Sometimes, the most important response you can offer a caregiver is silence. The kind of silence that signals you have fully absorbed what they are saying. The kind of silence that says you take her words seriously. The kind of silence that affirms what she is feeling. The kind of silence that says, “I’m here to listen and support, not to solve.” Many of the things a caregiver will experience have no solutions; much of what a caregiver confides to us is so precious and personal that no words of response are necessary.
• Laughter and tears are both acceptable responses. It is okay to laugh when a caregiver describes a situation that is genuinely funny. Humor doesn’t stop when health does. It is also okay to join a caregiver’s tears. Empathetic listening means we respond with our feelings, not just our voices. The word empathy is derived from the Greek word empatheia, or passion/affection.

What listening tips or techniques work best for you as a caregiver…or as the caregiver to a caregiver? I’m listening….

Listening With Care

How can we tell what a caregiver needs most? How can we discover the caregiver’s deeply held anxieties? I’ve found that the most direct discovery tool is simply this: ask with the intent to learn, and listen with the intent to care. I share a simple example, below, to demonstrate my own experience. I would love to learn from your experiences (and, with your consent, I would like to post them here for others to learn as well).

I arrived at the front door of the home of my patient, Tom, and his wife, Sara, for my initial visit. Tom had been battling throat cancer for some time. He was now suffering from a complication of the radiation treatments, so swallowing had become very painful for him. Between the pain and the fungal infection invading his throat, he had made the decision not to eat or drink anything to limit the added pain those activities caused him. The physician has prescribed feedings via a temporary tube placed in his stomach. Tom was frustrated with the stomach tube, the discomfort caused by his medication, the pain that accompanied every attempt to swallow, and the fatigue of the daily trips to the hospital for radiation. Tom was frustrated with everything and everyone. He had already had more than enough – but these new feedings were the last straw. He was tired playing by a rulebook that caused him only pain; his decision to stop eating and drinking – despite all the assurances of the cancer center staff assurances -- was his attempt to re-exert control.

Sara, his wife greeted me enthusiastically at the door with a smile and a sigh of relief, “I hope you can help. Tom is very angry right now and is refusing to come downstairs.” I asked Sara if we could just sit and chat for a few minutes first. She was anxious and handed me the folder they had been given by the cancer center with the lists of medications, treatments and appointments for Tom. “Everything should be right there for you,” she said.

I put the folder aside without opening it and looking at her, asked, “How are you doing, Sara?”

Immediately, her tears flowed and she replied, “It has been so long since anyone has asked me how I was doing. I am not even sure anymore how I am doing. I am trying to do my best for Tom, I really am.”

That simple question encouraged Sara to open up and describe how surprised she was to have anyone inquire about her. Everyone in their circle – doctors, nurses, children, neighbors, church members -- was always asking how Tom was doing. She simply could not recall the last time anyone paused to ask about her. She also spoke about all the ways she was trying to adjust Tom’s diet to make swallowing less painful, and the level of discouragement she felt when nothing seemed to work. She described her inability to ease his anger and frustration, and her secret fear that she was somehow making everything worse. She apologized for sounding selfish and expressed feelings of guilt to even have these thoughts, but she was exhausted, emotionally spent, and on many days she didn’t feel well herself.

I did no more than listen with constant eye contact and hand her tissues. By the end of our few moments together (and that really was all it was), she was smiling and leaned into me and whispered, “He was always a handful to live with. I guess the cancer wasn’t going to change that, huh?” We hugged and I said we would talk more after I visited with Tom.

Each visit after that, Sara and I always made time to talk about how she was doing, what she was missing, what she had enjoyed and would want to do once Tom’s health improved. Over time, I could see that these simple conversations – these small gestures of asking and listening with intent to care – made a significant improvement in Sara’s outlook and ability to cope. By making purposeful caregiver listening part of the home-care visit, I was able to learn a great deal more about the family’s needs than I could have gleaned from any other method of observation. Ernest Hemingway once said that “I have learned a great deal from listening carefully. Most people never listen.”

I agree.

Shades of Change

As I was driving to Ohio yesterday, I was in awe of the natural beauty surrounding me; an incredibly warm day with the sun shining on the colorful trees against the blueness of the sky.  Once again this seasonal change had me contemplating the gifts and choices God gives us. 

In the past, I have shared an analogy between the seasonal transformation of the leaves and my personal reflections on how life and death is often viewed.  I would like to share these personal thoughts with you.    

The trees that have not yet changed color represent those of us who refuse to acknowledge the reality that we are not meant to be here forever, that there is a life beyond this one we have on earth.

The leaves on trees nearby may have already turned brown and shriveled; they represent those of us who tire of life early-- finding no reason to enjoy the limited time we have--they have ceased to live but have yet to die. 

My favorites remain the beautiful trees with brilliant orange, red and gold leaves reaching up to the heavens and basking in the sunlight.  These represent those of us who live each moment to the best of our ability, who find and share the beauty of their surroundings.  They are not naive, they know the end of their season is near yet they see each and every day as a special blessing.    

We should not stop our examination here; all these trees will become bare as the season progresses but we need to remember that new life simmers deep inside of them just waiting for the rebirth spring allows.   

Fearless Caregivers

This past week our nation lost thirty brave young men in one swift moment as they were coming to the rescue of their countrymen.  Their deaths are a reminder of the extraordinary sacrifices made each day by the men and women of our military and their family members.

The armed forces are our country’s caregivers both here and abroad.   They leave their loved ones to serve their nation and protect our homefront.  This isolated event has left more than a dozen women heartbroken and widowed, more than twenty children fatherless, countless other family members and friends mourning and the naval community reeling from this immeasurable loss.

Let us keep all of them and their families in our prayers.  Let us respect their efforts and ease their sacrifices wherever and whenever we can.

Where Strength is Found

About two weeks ago, my mother was talking to me over the telephone while she was observing my Dad during his physical therapy session; her anger with his inability to walk as the therapist instructed was palpable during the conversation.  Dad was complaining of being dizzy, winded and needing to rest then less than a day later he was back in the hospital.  His blood pressure and oxygen levels were very low because of dehydration; the very reason for his dizziness and shortness of breathe the day before.  I was upset with my mother’s frustration because in actuality Dad was not avoiding therapy but was very ill again. 

As we waited in the emergency room with Dad, I witnessed my Mom turn away from his bedside and actually tremble-- with fear--at the severity of his condition.  Anyone else could be expected to react in this manner considering the events of these past weeks but it was very atypical for my mother.  My Mom had always been the “strong one” and when we were children often heard her comment when faced with adversity; “I am not scared of shit!” and she never seemed to falter.   Somehow she always managed keep us safe and herself visibly strong through whatever the current crisis was.

I remember when as an adult struggling through my own personal problems and not feeling certain about much, asking Mom about her ability to stay so strong in stressful situations and she explained often being very frightened.  But Mom felt that if she let herself weaken in even the smallest way then everything else would fall apart.  She was using this same coping mechanism to get through what has been an incredibly difficult time with my Dad’s illness, surgery and recuperation.  Mom was using her anger; believing that if she did not weaken or let my father see her falter then he would push harder towards recovery. 

It was not until later that night as I was driving home that I had the opportunity to contemplate the past few days; recalling Mom’s normal coping mechanism was to use anger to find strength.   I was also very disappointed with myself for not remembering this earlier as just the day before I had admonished my Mom for her lack of compassion.        

Stress can bring out the best -- and worst -- in any of us.  The added factors of age, fatigue, severity and duration of the crisis, past experiences and available support systems can effect how we react.  Many individuals are able to learn new ways of coping through focused effort and the gift of time but most of us will rely on well-learned and practiced coping mechanisms in times of severe crises. 

Dear Readers,

I apologize for the infrequency of postings these last few weeks.  As fellow caregivers, I am sure you understand how easily good intentions can take a back seat on any given day.  I am going to make every attempt to mend my ways beginning this week.  Thank you for your understanding. 

Taking a Cruise

Several years ago I had the opportunity to care for Liz, a young woman who was in her early 40’s and had been diagnosed with MS (Multiple Sclerosis) for several years.  Her disease had advanced to the point that she required a wheelchair for mobility and she saw her independence slowly slipping away.  Liz was not about to give in easily.  She and her new neighbor, who was also wheelchair-dependent with a similar diagnosis, had bonded -- not over the fact that they both living with a progressive neurological diseases and limited in their mobility -- but rather the fact that they had both been bikers in their younger, wilder years.  These “Harley Chicks” decked out their wheelchairs with Harley flags and donned their biker accessories while they cruised the neighborhood on shopping expeditions.    

As caregivers, we often become busy with the day-to-day needs of our loved ones and forget the special qualities that made them unique as individuals to us and others.  We need to remember what they enjoyed doing most in healthier times; was it flower gardening, listening to a baseball game with a cold beer or shopping at a favorite store even when they did not need a thing?  Making time for these additional needs can be difficult when schedules are hectic but it is these very tasks that can bring great pleasure to those we love and a deep contentment to ourselves as caregivers.    

Lessons Revisited, Part 2

As my father slowly recuperates, I have continued to learn and relearn many lessons in my role as a family and professional caregiver. 

Dad had limited opportunity to learn the tasks that would be needed to care for his new stomas in the days following his surgery; circumstances in the environment also contributed to his frustration.  Every time the appliances were to be changed a different nurse was assigned; the care was appropriately done but each had their own method of completing the task, manner of teaching and tidbits of advice.  Different supplies were used in the sessions which contributed to the lack of continuity.  Yet what was most upsetting for my father was that he was left lying flat on his back during the care; he listened carefully but he could not see what the nurse was doing and when he attempted to touch the involved areas was instructed not to do so.  Dad asked them for a mirror so that he could observe but they did not have one available; we brought one from home for the next session.

When an individual is being taught a new skill they need to be fully present in the moment yet there are many things that can interfere-- fatigue, stress, pain, sedation, anesthesia after-effects, debility and positioning-- making focus and retention very difficult.  Some solutions to these obstacles may be very easy to achieve.

The professional caregiver can control many of the distractions to learning.  The family caregiver can incorporate these same simple practices if they will need to instruct others at a later time. 

• Create a private, calm and conducive environment; ask visitors or those not involved to step out of the room, pull the curtain or close the door, turn off radios and televisions, turn lights up and clear clutter. 
• Prepare and organize needed supplies to avoid having to interrupt the session repeatedly to obtain more equipment; utilize the less-is-more philosophy to avoid confusion and frustration for other caregivers.
• Provide easy-to-understand written instructions with pictures or diagrams for review.     

In medicine and nursing there is an old adage; “watch one, do one, teach one” when learning new skills; this method of teaching and learning is not only stressful it can be harmful.  No one should be expected to master a new task without appropriate instruction and practice; observing and questioning contribute to success but the best teacher is most often hands-on training.  

EXCESSIVE HEAT WARNING

Many areas of the country are feeling the heat of summer paired with high humidity levels and this combination can result in a dangerous and deadly situation.  The seriousness of this risk is heightened if the individual is a child, elderly, pregnant, obese or injured.  Some medications--high blood pressure and water pills especially-- may intensify the threat.  Healthy, athletic individuals can also be affected if the warning signs are ignored. 

Heat exhaustion and heat stroke are both dangerous and can be life-threatening heat-related illnesses.

• The signs of heat exhaustion include: heavy sweating, paleness, muscle cramps, tiredness, weakness, dizziness, headache, nausea, vomiting and fainting.
• The best treatment includes drinking cool, nonalcoholic drinks, resting in an air conditioned environment and taking a cool shower or bath.  If the individual cannot keep liquids down, they will need to be evaluated by a physician.  
• The signs of heat stroke include: fever above 103 degrees orally, red, hot dry skin, rapid strong pulse, throbbing headache, dizziness, nausea, confusion, seizures and loss of consciousness.  Individuals who are bedridden and don't have access to water and are not in an air-conditioned area are at a very high-risk of developing heat stroke. This condition can lead to brain damage, organ failure and even death if not treated quickly. 
• The best treatment includes calling for assistance immediately, moving the individual to a shady or air conditioned area and begin to cool their bodies down rapidly. Do not give the individual fluids to drink. Do not give aspirin, acetaminophen or ibuprofen to lower fevers.  Do not give salt tablets.

Following the expert’s advice can prevent heat-related tragedies:

• Get cool and stay cool.  Air-conditioning is the number one protective measure against heat-related illnesses and death.  During times of extreme heat, if your home is not air-conditioned plan to spend time in locations with air-conditioning-- shopping malls, public libraries, movie theatres or heat-relief public shelters in your area--during the hottest times of the day.  Electric fans can help to provide comfort but once the temperature soars above 90, fans alone will not prevent heat-related illnesses.  Cool showers or cool sponge baths are another way to cool off.  Listen to your local news and weather channels during extreme heat conditions for health and safety announcements and follow their advice. 
• Stay out of the sun.  Outside work should be scheduled for early in the morning, late in the evening or in well-shaded areas. Pace your outdoor activities.  Take frequent breaks in the shade or cool areas to allow your body to rest and recover. 
• Drink plenty of fluids.  Do not wait until you are thirsty to begin to replace fluid loss.  Cool, nonalcoholic beverages are needed to increase fluid intake regardless of activity level.  A sport beverage can replace the salt and minerals lost from perspiration, alternate with a non-sodium rich beverage.  Those individuals on a low-salt diet should contact the physician before drinking a sports beverage or taking salt tablets. If you or your loved one is prescribed fluid restrictions because of a medical condition, contact the physician for further advice. Alcohol or heavily sugared drinks actually increase the loss of body fluids.  Extremely cold beverages may cause stomach cramps.  
• Dress down.  Wear as little clothing as possible--lightweight, light-colored and loose fitting. 
• Travel smart.  Never leave children, elderly individuals, those with disabilities and pets in parked cars for any length of time.  Automobiles heat up very quickly and the temperatures can rise 20 degrees in 10 minutes.  Always have fresh beverages available on your summertime journeys. 
• Check in on relatives and neighbors. The creation of a twice-a-day telephone or check-in buddy system with those who live alone and are more prone to heat-related problems is very crucial to the safety of loved ones and community members. 

Lessons Revisited, Part 1

Over the last two weeks, I have observed many professional caregivers providing the much needed care that my father required after his surgery.  I have also participated in his care while he was hospitalized and then discharged to home.

The first lesson I want to share with others is that when professional caregivers are talking to individuals and family members they need to always practice the simple task of presenting information in a clear, concise and easy-to-understand method. They need to reinforce their explanations and ask those involved to repeat the information to verify not only that the words were heard but also understood.  There are other factors that should also be taken into account; do any of those involved have a hearing deficit or visual limitation-- many with even the most minor of hearing impairments have learned to lip read in order to better comprehend the conversations around them-- that could interfere with their understanding?  Inform the staff and allow them to post the information-- usually as an over-the-bed sign-- near the individual.  Language barriers may also exist between individuals and caregivers; asking for a medical interpreter for assistance may be needed.  Pain medications and anesthesia have lingering effects especially for older individuals and can cloud perceptions; the same information may need to repeated several times over several days to be fully understood.  No caregiver should ever assume that a nod of acknowledgement is an indication of comprehension.

Dad had his surgery on Friday and his surgeon reassured us that he had told Dad that they had to create another ostomy because there had been a hole in his bowel after they removed his bladder.  I have no doubt that other healthcare providers had repeated the same information to him over the next day or two. 

On Sunday afternoon, I was sitting quietly at his bedside as Dad alternated between napping and watching a baseball game.  After several hours, he looked over at me and said softly; “Did you know that I had a hole in my bowel?  They fixed it already.”  It was at that very moment I realized he had not yet comprehended what had occurred.  I explained to him that they had repaired the hole but in order to do so they had to make an another outside ostomy to divert the stool and allow the bowel to heal.  “I have two openings now?” he replied as he tried to raise his head to look at his abdomen.  I nodded yes.  The crushed look on Dad’s face was extremely difficult to watch.  I went on to explain that if everything healed as planned they would be able to reverse it in several months and close the second hole on his abdomen.  Dad just closed his eyes and shook his head slowly. 

 

An Unsung Hero

Several days ago, our country lost an incredible pioneer as former first lady, Betty Ford died at the age of 93.  Her roots deep in the Midwest and similar to so many others from that region gave her voice a plain-spoken frankness.

Just a few weeks after her family was thrust into the arms of the nation when her husband was sworn in as an unelected President and her boisterous, fun-loving family took residence in the White House; she was diagnosed with breast cancer.  In the mid 1970’s the openness she demonstrated about her diagnosis, radical mastectomy and recovery was uncommon and elevated her to national heroine.  She told of the experience of coming down the stairs at their first state dinner and thinking; “…they are all trying to remember if it was my left or right breast that was removed.”  

The openness of her experience had another-- and unexpected-- effect that had not occurred to her: Women across the country began seeking checkups for breast cancer.

It was that same inner strength, determination, love of family, and desire to carry on despite adversities that gave her the courage to confront her addiction to alcohol and prescription drugs just a few years later.  She remained strong as she faced the truth of her addiction and fought the stigma surrounding her health problems.  The rehabilitation facility named for her -- The Betty Ford Center-- has gone on to successfully treat many other individuals suffering from any variety of addictions.

She was remembered at a memorial service in California today as a mother, first lady, friend and tireless advocate for those struggling.  We are again left to imagine facing ‘secret’ diseases far too often hidden by shame and battled privately with so many eyes watching, having to cope with the fear, the doubts, the pain with every appearance, every decision scrutinized by the media and millions of people.

May she now rest in peace, victorious in her earthly battles.

A Few Bumps in the Road, Part 2

The caregiving demands surrounding my parents have been the #1 priority over the last few days.  As family caregivers can all attest the days have been full-- but meeting needs and addressing issues have  made for an incredible professional and personal learning experience--this increased knowledge that can only come from a first-hand experience will be shared in the very near future.

Going Public

"I need the ones I love Lord/More and more each day."  --

From “A Better Place” by Glen Campbell

            Grammy-winning singer and songwriter Glen Campbell and his wife, Kim, recently announced that he has Alzheimer’s disease.  The couple chose to share his diagnosis because Glen is about to go on tour to promote his latest album and didn’t want fans to mistake any signs of forgetfulness or confusion with substance abuse.

            Going public with a disease as fraught with fear and misunderstanding as Alzheimer’s takes real courage.  We’ve seen similar public displays of courage before, as President Ronald Reagan and celebrities like Charlton Heston announced their diagnoses, using their announcements, in part, to make a statement of farewell from public life.  We can admire their courage and understand their decision – better to “go public” than to have their privacy mercilessly invaded by prying tabloid reporters and photographers. 

            While Campbell chose a similar path, his decision feels different.  He is not retiring from the public stage, but making an announcement prior to taking the public stage again.  His family explains that music continues to be his gift and his great joy.  He wants to perform; he wants to continue a public life as long as he can; he wants the support of family, friends, and fans. 

Campbell offers us an example we may want to embrace.  Today, an estimated 5.3 million Americans are thought to have Alzheimer’s.  The Alzheimer’s Association tells us that every 70 seconds, another American is diagnosed; by mid-century, they expect the rate of diagnosis to accelerate to every 33 seconds. Most of those who are diagnosed hope to stay engaged with the people and activities they love for as long as possible, even as the initial symptoms increase in frequency and significance.  Yet many who already suffer with the disease find that the most painful and significant deterioration they face is not the loss of memory or capability, but the loss of friends and social connection.

 Given these statistics, perhaps it is time for each of us to consider how we might handle such a diagnosis.  Would we choose to share it openly with friends, as we might share diagnoses like diabetes or cancer?   Would we choose to explain that the slight forgetfulness or confusion is more than a senior moment and will continue and worsen?  Might we choose to tell our friends that we will need them more now than ever to help us maintain a sense of social connection and normalcy for as long as possible?

The decision to “go public” is a personal decision, of course.  Those of us who seek to share our diagnosis may find an amazing opportunity:  to help de-stigmatize a frightening disease, to help others understand its progression and treatments.  By choosing to share, we may actually help ourselves and others.  New research has consistently shown that physical activity, mental stimulation, and social engagement help all people stay healthy as they age and also reduce the risk and rate of cognitive decline in Alzheimer’s patients. 

Whether we share an Alzheimer’s diagnosis or whether we choose to stay private, as Alzheimer’s becomes a more prevalent health, demographic, and economic factor in our society, each of us will have the opportunity to show that Alzheimer’s patients and their families can live with joy. 

Our Special Caregivers

“Caregiver” is largely visible on the badges of each Cleveland Clinic employee from nurse and resident to housekeeper and engineer.  It is more than just a word here; it is their living mantra reminding everyone that being a caregiver is their first duty.  Each and every employee’s role is important in providing a caring and healing environment for the patients and family members. 

 

The Cleveland Clinic is massive -- huge buildings connected by skywalks and shuttles over a sprawling campus-- and could be viewed as overwhelming but as my family has learned over this past week it is also a deeply personal place where anyone will pause to greet you sincerely, to offer directions or to repeat an instruction.  It is these simple acts that bring comfort to weary loved ones.  Despite the toll this health care crisis has brought our family; being here has been amazing experience in the level of care my father has received as well as the teaching and support we have all received on a very personalized level.

Bumps in the Road

On Friday, we arrived at the Cleveland Clinic Surgery Center before 5:30 in the morning as instructed and it would be twelve hours later before the procedure would be completed.  The surgery proved to be more extensive with some complications not anticipated.  My Dad will now experience very significant life changes-- he will have a ileostomy as well as a urostomy-- and will be more than surprised when he is finally aware of all that occurred.  On the other hand his surgeon did not see any visible signs of more cancer; but the final pathology report is weeks away. 

Post-operative courses are also very fatiguing for the individual and their loved ones. The anticipatory stress is over yet there is often a let-down factor that seems to deflate all the energy that was so well-maintained in the preparations for the procedure.  Now the concerns change; will the results but negative…will there be any other complications…how will he manage all these changes…how will our lifestyles change…will there be another surgery in the near future…will there still have to be more chemo?  There are no answers to these questions today. 

Dad is making progress; the attached tubes and wires have decreased, he is walking further and more frequently and is now allowed an ice chip per hour.  He is also asking questions and absorbing the answers and their implications.  He is very fortunate to have a strong and supportive team of family members and professionals beside him on his journey.  

On the Road

The Caregiver's Caregiver will on the road for the next week or so; following the course of Arnie's surgery and recovery.  The caregiving journey will be seen through the eyes of his immediate family. It will begin on the ride to the hospital, the inpatient stay, the trip back home and will continue the rest of Arnie's life.  Hope you will be a part of the journey with us.

Please add your comments and experiences as we can all learn from each other's experieinces.

It's Different for Men, Part 4

Men and women often seem to speak different languages.  Men are more likely to approach a problem in a direct and pragmatic manner and in certain situations that is exactly what is needed.  Women more frequently will assume the role of listener and comforter in similar circumstances allowing the individual to reach their own conclusions or gently guiding their path.  Each individual and situation remains unique in the avenue it takes to reach a resolution.          

Over this past weekend, my Dad had the opportunity to talk with Joey, a member of the community who had the same diagnosis he currently does, has gone through a similar surgery and is coping successfully with the lifestyle changes the surgery entailed.  They spoke privately; the conversation was not long or intense but at its conclusion my Dad felt a sense of camaraderie and relief.  Joey is a “having-been-there” caregiver.   Many times there is no better teacher than one who has walked the same path and can share their experiences honestly and constructively with others.  

This experience reminded me that I have spent many hours teaching and supporting individuals and caregivers in learning new skills.  As a nurse, I have reinforced the instructions already given to my father.  As a daughter, I have listened and reassured my father when questions and doubts have arisen.   Yet, it was Joey who spoke the language Dad needed most to hear-- the voice of one who has walked the same path, stumbled over similar obstacles and is there to reach out to another in need.

Thank you Joey.  

It's Different for Men, Part 3

John and Loretta were an elderly couple who had both been widowed for years when they married in their early seventies.   Loretta had two adult children who lived nearby but John had no children.   After a dozen years of marriage, John began to notice changes in Loretta’s mental and physical abilities; both chose to overlook these “mishaps” for as long as possible.  She was finally diagnosed with both Parkinson’s and Alzheimer’s disease; Loretta’s disabilities advanced rapidly with her speech and swallowing skills most affected. 

When I met them, she had just been discharged from a skilled nursing facility after a hospitalization for aspiration pneumonia.  Loretta could no longer take any foods or liquids by mouth and her speech was severely garbled.  A feeding tube had been placed in her stomach; she was to get around-the-clock feedings and medications through it.  As often happens after a debilitating event, the disease processes had further progressed and she now required assistance with ambulation and personal hygiene. 

We worked together to make a list of her medications, the times they would be due as well as the feeding schedule.  John would have to learn how to instill the tube feedings, care for the insertion site and troubleshoot the equipment-- yet more new tasks were to be added to his plate-- Loretta now also required  her blood sugars tested several times a day and insulin given when needed.

The next day, I returned and John had designed his “organization”.  Pill bottles were lined up on the kitchen counter, a chart was made for every activity required which encompassed almost every hour of the day and a notebook had been started to record blood sugar values, doses of insulin administered, feedings completed and medications given.  I noted that the details were regimented with no room for human variance which is so very common in the day-to day life of a caregiver. 

No one could fault his efforts but I asked a few question; “Did you get any sleep last night…did you eat breakfast…did you take your own medications?”   The answers were all negative.  The effects of this wear and tear on his health and well-being were already evident.  John’s only plan was to do whatever it would take to keep Loretta home but even he realized on that second day what an incredible task this would be.  Their family doctor was agreeable with any suggestions I made but their insurance company was not; home care was allowed only 5 visits to provide all the teaching and support John and Loretta would need.  Because of these intense limitations, John was very anxious to obtain outside assistance immediately--other family members refused to help--  fortunately two women from their church were available for several days each week. John insisted that he alone would be responsible for the feedings and medications but they could help with Loretta’s hygiene needs and housework as well as remind John to take his own medications and meals.

 

John’s approach to Loretta’s caregiving needs is a very common one; most men who provide care for a loved one are recognized for their organizational skills, their attention to detail, their “get-er-done” approach to these responsibilities.  These are all admirable traits for any caregiver but no more so than the hands-on, nurturing skills women are more likely to bring to caregiving situations.   

Men are also more willing to recognize that they need help and will seek additional support; their reasons may vary but common ones include embarrassment with providing the intimate care often required, other family commitments and financial responsibilities.  Women much more frequently have a difficult time admitting their need for additional help; they are intent on doing everything themselves that their loved one requires as they sense they should be able to handle all tasks.  Regardless of gender; the risk of fatigue, emotional and physical stress and social isolation are factors that can occur and are often avoidable in the caregiving experience.