The Alzheimer Journey

 What is a nine-letter word for apprehension, debility, and fatigue? 

                                                          Alzheimer 

The latest research that earlier diagnostic testing for Alzheimer’s disease will soon be available and the potential number of individuals who could be affected (whether directly or as or caregiver) are simply staggering.  Yet we must focus on the promise these developments may hold:   with earlier diagnosis will come earlier and more effective treatments, and the very real potential of the delay of symptoms and prolonged quality of life.  

Currently, family members often have to rely on confusing and conflicting early signs of the disease:  increasing forgetfulness, inability to follow directions, difficulty completing everyday tasks, trouble paying bills, getting lost on familiar routes, becoming more withdrawn and self-limiting favorite social activities.  Ironically, these symptoms can evoke two contrary reactions:  terror (that an Alzheimer’s diagnosis is inevitable) or denial (this is just a part of aging). 

When a loved one begins to exhibit these symptoms, it is important to get a thorough evaluation by a qualified physician -- these are not the usual signs of getting old.  Concerns need to be addressed and given appropriate consideration.  Discuss your concerns with the individual beforehand and plan to attend the examination with them.  If your loved one is frightened or in denial, do your best to assure that a conversation with the doctor is the best way to dispel fears and take appropriate action.  Develop a list of questions, examples of behavior, and concerns, and ask the health care provider to address them. Allow your loved one to answer the physician’s questions on their own; if they are unable to do so, the physician should ask you for what you have observed.  Write down the physician’s responses so that both you and your loved one have an accurate record.

When the diagnosis of Alzheimer’s disease is made, it is important to begin to take action: 

• Learn all that you can from reliable sources.  Health care professionals experienced in the care of individuals with Alzheimer’s disease, trustworthy internet sites and appropriate support groups include these:  The Alzheimer’s Association @ www.alz.org, which provides support for the families and caregivers of individuals with AD and local chapters for resources, support groups and educational programs; the Alzheimer’s Disease Education and Referral Center @ www.alzheimers@nia.nih.gov, which offers information on the diagnosis process and treatment options; and the Administration on Aging @ www.aoa.gov, which supports the caregiver and provides direction on available services and support. 
• Begin to plan for the future.  Obtain honest and reliable financial and legal advice.  Always allow the individual to make choices while they are still able to, especially regarding their desires for long-tem care options and advance directives such as durable power of attorney for health care decisions and financial power of attorney.  You can introduce these topics over time, be careful not to overwhelm your loved one with too many consequential decisions all at once. 
• Learn what is available in your area.  Options may include the local chapter of the Alzheimer Association, community resources, area churches, respite programs, adult day care and alternate housing options.  Find out as much as you can about eligibility criteria; a single phone call can provide tremendous insight.      
• Develop your support team early.  The diagnosis of Alzheimer’s disease is not a cause of shame or a reason to hide the truth from those who care about you.  You will need their help, so be honest with other family members and friends what you and your loved one are facing. Identify your concerns and anticipate your needs.  Begin learning how to ask for and accept help from others. 
• Begin to make the necessary changes.   Look at your home environment; view it as a safe haven for both of you; begin the process of making and keeping it one.  Are there places inside your home that will become increasingly unsafe as the disease progresses?  Study the rhythm of each day; make the most of the times of day when clarity and cooperation are greater and develop routines that are workable for both of you that revolve around those times. Always know that with the progression of the disease, change is inevitable.  If you develop support systems when the situation is still manageable, you can make things work when times become more difficult.  Many with early stage Alzheimer’s chose to live independently as long as possible; they may need assistance with shopping, pre-planning meals and frequent contacts throughout the day to assess their well-being. 
• Enjoy your time together.  In the early stages the opportunity to continue to enjoy special events, trips and day-to-day activities is absolutely possible and should be pursued.  When memory and ease of mobility begin to fail, make memory books together, recalling special people and events that can be enjoyed with your loved one and others who come to visit. 
• Allow your loved one to control the changing stages of life.  We can all remember President Reagan’s last letter to the American people. That letter allowed him to formally acknowledge his Alzheimer’s disease, say goodbye to his vigorous public life, and transition to a new, more private stage of life according to his own timeline.  Very few Alzheimer’s patients need a public exit, but each needs an ability to say a gentle farewell to what was and to move on to the next phase of life, which will be more private.  One gift that Alzheimer’s gives us is the opportunity to plan for that transition. 
• Take care of yourself. Caregiving is a 24/7 role. Your life will change; the rewards you derive from caregiving will be hard-won.  Learn to make and take time for yourself.  Design a back-up plan that is easily put in place if you cannot meet your caregiving responsibilities for any variety of reasons.

The best advice is for all of us to learn to treasure each and every day always living life to the fullest. 

 

New Alzheimer’s Guidelines

                    

In 1906, Dr. Alois Alzheimer cared for a woman whose symptoms included memory loss, language problems, and unpredictable behavior. What was this unusual mental illness?  How should it be treated?  Could it be cured?  It wasn’t until after she died that Dr Alzheimer discovered answers to some of his questions, but many questions remained unanswered.  He examined her brain and found many abnormal clumps (now called amyloid plaques) and tangled bundles of fibers (now called neurofibrillary tangles).

Plaques and tangles in the brain are two of the main features of Alzheimer’s disease. The third is the loss of connections between nerve cells (neurons) in the brain.  Until relatively recently, Alzheimer’s disease could not be definitively diagnosed until after the afflicted individual had died. The care and treatment were based on the symptoms the patient displayed.

Alzheimer’s disease is an irreversible, progressive brain disease that slowly destroys memory and thinking skills, and eventually even the ability to carry out the simplest tasks, like chewing and swallowing.  In most people with Alzheimer’s, symptoms first appear after age 60. 

Scientists still do not fully understand what causes Alzheimer’s disease.  It is felt to have genetic, environmental and lifestyle factors.  Now, for the first time in nearly three decades, new guidelines for Alzheimer’s disease have been released by the American Alzheimer’s Association and the US National Institute of Aging.  These guidelines tell us that:

• Alzheimer’s disease is being recognized as a continuum of stages, not a single incident.  It occurs gradually over many years.  Alzheimer’s itself has clear symptoms of cognitive and functional impairments that are beyond memory loss such as visual, spatial and judgment problems and inability to care for one’s own needs.
• Mild cognitive impairment (MCI) with mild symptoms of modest impairments (like memory issues) may be the harbinger of Alzheimer’s disease, but progression to Alzheimer’s disease is not inevitable.  People with this condition have more memory problems than normal for people their age but not everyone with MCI progresses to Alzheimer’s.
• A newly classified preclinical stage is characterized by no symptoms but definitive brain changes that occur about 10 years before dementia sets in. Biomarkers (indicators of certain proteins) in blood and spinal fluid can be identified at this stage.  These amyloid proteins are used to diagnosis the disease and assess its progression.  The tests and data are still in the research phase; there is still much work to be done before this screening will become a regular part of an exam but it will become invaluable to the future diagnosis and treatment of the disease.

These new guideline changes are unlikely to change current assessments being done in physician’s offices.  The diagnosis will still be made by the health care professional with the assistance of someone who knows the individual well and often by the individual themselves.  In the near future when research is completed, the use of these biomarkers will establish the certainty of the diagnosis rather that having to rely on clinical symptoms only.  The ability to diagnosis an individual at a preclinical stage will allow for much earlier treatment, prevention efforts, and the great potential for improved results.  Current findings suggest that medications to slow the progression of Alzheimer’s disease are started too late to be effective.  Consider the improvement seen in the prevention of heart attacks with use of statin drugs for those individuals with elevated cholesterol; for many the use of statin drugs and lifestyle changes successfully prevent serious heart disease.  The same may one day be said regarding Alzheimer’s disease.

Estimates vary, but experts indicate that as many as 5.1 million Americans may have Alzheimer’s disease.  The diagnosis of MCI will greatly increase these numbers.  Already there are studies are suggesting that up to 10 million baby boomers will suffer some form of dementia.  These numbers are overwhelming but we must not give into despair.  The push for more research, more and better screening tools and more effective treatment options is critical.  Education, preparation and support of the already 15 million Americans caring for someone with Alzheimer’s or dementia is essential.  Without these family caregivers, the quality of life of an Alzheimer’s patient would be impossible.

So Far Away

Looking at the calendar this morning, I realize it has only been three weeks since we learned the diagnosis of Dad’s cancer but it feels as if this journey has been much longer. Today will be Dad’s last chemotherapy treatment for the first scheduled round; with the exception of some bruising on his arm, a shorter haircut and more fatigue than usual he has survived it better than we could have anticipated.  Dad has also had time to contemplate the shock of the diagnosis, the anticipated treatment plan and the reality that the choices are his alone.    

Living just 100 miles away over this last year has often felt more like 1000 miles.  I am aware that I am not alone in feeling this exaggerated distance when someone we love dearly is ill or elderly and we are not living nearby.  There are approximately 7 million adults who are long-distance caregivers, providing care for aging parents who live an hour or more away.  Many of us frequently ask ourselves the same questions:

• Are they telling you everything?
• Will they ask the questions you prepared for them?
• How will they handle all the information directed at them?
• Should you have taken the time off and gone to the appointment/treatment with them? 
• Are they eating regularly and sleeping enough?
• What else can you do to decrease their stress?

Just as other long-distance caregivers have learned; I will learn that I cannot be there as much as I would like and that I cannot control all that I wish I could.  There is a fine balance in helping them through the medical obstacle course, trying to make day-to-day life easier and not infringing on their independence.   

Eat Smarter for Less

Looking for ways to save money and eat healthier?

Reading numerous ads and clipping coupons is a thrifty but time-consuming practice for the busy caregiver.  Running from one store to the next to save money is gas-guzzling and tiring.   Here are a few other practices that will save your money, time, and energy while improving your dietary choices:

·        Make a grocery list; try organizing it based on the store’s layout to save steps and backtracking.

·        Don’t go to the store hungry; it is too easy to be tempted by poor choices if your stomach is grumbling.  Snack on crackers and peanut butter or a piece of fruit and cheese before leaving home to quiet the rumbling.

·        Grab the store’s advertisement flyer on arrival and briefly review it.  Many other unadvertised sale items will be marked in specific departments and aisles.  

·        Work the perimeter of the store first for healthier selections; fruits, vegetables, meats, dairy products are usually placed on the outside walls of grocery stores.

·        Too rushed to read labels?  A few quick tips include:  beware of canned soups and vegetables, sauerkraut, pickles, processed meats, and frozen dinners, all of which contain higher quantities of sodium (salt).  The difference between fresh and frozen fruits and vegetables is price.  Canned fruit is also higher in sugar content.  There are more health benefits from eating a piece of fruit rather than drinking a glass of fruit juice.

         Increase the variety of proteins you eat by incorporating beans, nuts, and soy in your diet. They cost much less than animal proteins such as beef, pork, and eggs.  Plant proteins are lower in calories and fat, and are good sources of fiber.

When the opportunity arises to eat out, enjoy the change of pace while still keeping it healthy.  When eating out, start with a salad.  Immediately ask for a to-go box when the main course arrives and place half of the meal in it -- out of sight, out of mind -- and the leftovers will be a reminder of an enjoyable meal outside of the house.  When cooking at home, the quantity of food prepared often exceeds the needs and appetites of the diners.  Follow the restaurant practice and serve only a portion of what was prepared and save the remainders for another meal.

Incurable Faith

 “Tell me, Father, why is there so much pain and darkness in my soul?”  – Mother Teresa

This week -- even as men and women of faith across the world observe Passover, Holy Week, and Easter -- our lives are shadowed by peril. For some of us, the peril is quite personal – illness, disability, dementia, joblessness, and economic hardship.  And all around us, natural and man-made peril scars our landscape – earthquakes, tsunamis, tornadoes, war, terrorism,  and mindless violence.

During these times, one might wonder if faith really makes a difference.  We are not alone in wondering.  Mother Teresa of Calcutta, one of the most celebrated women of faith in modern times, struggled with “spiritual dryness” and prolonged struggles of faith, as her personal letters posthumously revealed.

Ultimately, each of us must answer questions of faith for ourselves.  Faith, at its essence, is trust in what we cannot see, cannot confirm, and cannot validate with technical proof. Faith cannot be directed, inherited, or prescribed.  The faithful know that their spiritual witness is intimate and individual.  The faithful also know that they must work to achieve their personal witness of faith…and work to maintain it. 

In times of trial and tragedy; during decades spent in pain, fear, and disability; and especially when our prayers appear to go unanswered, it takes super-human effort to keep the faith … to believe vibrantly, to hope steadfastly in what cannot be seen, to pray fervently when desperate silence surrounds us.  Yet many things suggest it is precisely in these critical times that we need faith the most – and when the power of faith may be most potent.

 

Harold Koenig, M.D., author of The Healing Power of Faith, has examined the healing powers of religious belief, including 70 data-based, peer-reviewed papers published in medical and scientific journals, that found:

• People with strong faith who suffer from physical illness have significantly better health outcomes than less religious people.
• People who attend religious services regularly have stronger immune systems and lower stress than their less religious counterparts
• Religious faith seems to protect the elderly from cardiovascular disease and cancer.
• Religious patients recover from hip fractures and open-heart surgeries better than nonreligious patients.

These studies do not suggest that keeping faith is easy.   If you are struggling to find solace for your soul, it is wise to remember that the course of faith is a course in courage and continuous renewal.  While the news media focused intensely on Mother Teresa’s personal doubts, they overlooked the only point that matters:  she continued to pursue a courageous course of faith, working with some of the most abject misery and poverty we can imagine, in spite of and in the throes of struggles of faith.  She did not have terminal doubt; she had, instead, incurable faith. 

She may have understood that faith – like molten iron – becomes as strong as steel only when it is tested, tempered, and refined by fire.  The Old Testament prophet Isaiah, speaking the words of the Lord, counseled:  “Behold, I have refined thee, but not with silver, I have chosen these in the furnace of affliction.”  (Isaiah 48:10)

~SDS 

Stress-Busters, Part 4

Our emotions – our thoughts, feelings, beliefs and attitudes -- are greatly affected by stress.     When we are well-rested and relaxed, a spilled glass of milk is just that.  When we are stressed and exhausted, that same spilled milk can be a major source of frustration or anger. The amount of chronic stress often experienced by caregivers will play havoc with emotions, causing even simple setbacks to elicit annoyance, irritability, anger progressing to depression. 

Studies have shown that almost half of all depression is caused by chronic stress.  It is vital that caregivers recognize the signs of depression in those they care for and themselves.  The most common signs of depression include:

·         Chronic feelings of sadness, excessive crying, feeling hopeless or worthless,

·         Loss of pleasure in activities once enjoyed,

·         Tiredness, fatigue, sleeping too much or too little,

·         Eating too much or too little with resulting weight loss or gain,

·         Irritability,

·         Poor concentration , forgetfulness, and

·         Chronic aches and pains that do not improve with treatment.

Depression changes how we view the world and how our body tolerates the demands we place on it.  If you or your loved one experiences five or more of these symptoms for 2 weeks or longer, contact your physician for advice.  Thoughts about suicide or persistent thoughts of death require immediate intervention from your physician or area emergency department.

When the sense of losing emotional control occurs, many simple coping skills can restore our calm and perspective.  Previously, I’ve mentioned the importance of walking and relaxation techniques like deep breathing, yoga, and meditations.  In addition, journaling is another coping technique that costs little, can be done at any time, and can help us regain a sense of perspective.  Journal-writing allows us the cathartic release of writing down what we are feeling; what we have experienced us; what worries or troubles us.  It allows us to write without concern for grammar, creativity, or organizational structure.  We can allow our thoughts to flow freely and release our emotions on paper.   You can choose to keep your journals private, and pull them out for 5 minutes a day to jot down the day’s events and emotions.  Over time as you review what you’ve written, you will undoubtedly see significant patterns – including patterns of how you’ve successfully endured bad days, bad moods, bad luck, and big struggles.

 

Some of us choose to keep journals with the specific purpose of sharing them with future generations of our family.    If you have inherited the journal of your parent or an ancestor, you probably consider it a cherished keepsake.  This type of journaling is a simple but powerful way of sharing your history with your children, grandchildren, and generations to come, teaching them life lessons that are of incredible and enduring value.

Many people keep a daily gratitude journal.  They discipline themselves to find even three things every day – even on brutally hard days – for which they are grateful.  This habit is deeply rooted in spiritual beliefs that in every burden there is a blessing:  something to learn, something to refine us, something to strengthen us.

 

All of these journaling experiences can help us make sense of our daily stress and help us restore order and meaning into our most chaotic circumstances.

Stress-Busters, Part 3

Why might you want to learn healthy ways of coping with stress?  As a caregiver you may want to be able to better meet the needs of your loved one and you know that in order to do so you need to stay as healthy as possible.  As an individual you may want to stay healthy to avoid health care problems or complications of already existing problems.

Stress has been shown to exacerbate of various health problems:

• Cardiovascular diseases (heart, blood pressure, circulation)
• Diabetes complications
• Digestive disorders (diarrhea, constipation, ulcers)
• Immune system disorders ( rheumatoid arthritis, MS, Crohn’s disease) as well as decreased immunity to infections, and
• Unhealthy lifestyle choices (obesity, smoking, inactivity).

Learning to read your body’s signs of stress and knowing when and how to take action can minimize the effects of stress on your health and increase your enjoyment of the caregiving experience. 

Biofeedback is a technique in which an individual learns to be aware of and respond to subtle signals from their body.  The first step is learning to be aware of these signals; for example, when you feel hungry, you eat; when you are tired, you sleep. Waiting until your body is totally depleted of nutrition or rest is dangerous and slow to resolve; waiting until your body is contorted by stress is no different.

Biofeedback is simply “body feedback” -- signals that alert you to your body’s needs. What signals might your body send you when stress is increasing? Do you ever feel tightness in your neck or shoulder region? Do you ever find yourself clenching your fists or grinding your teeth?  Do you feel a knot or burn in your stomach?  All of these are important feedback signals should alert us to deploy healthy coping mechanisms.

Walking, for example, is a simple, accessible, and free relaxation tool.  Many individuals find walking a great relaxation tool.  Walking can remove us from stressful situations because even simple changes in our environment change our focal point and clear our thought processes.  Physical activity stimulates deeper breathing that increases the oxygen to the brain and muscles, which in turn promotes relaxation as well as the release of endorphins -- the “feel good” hormone -- we all have in our bodies.  Taking a walk as part of your daily routine is a stress reduction goal that requires no special equipment or ability for most – and even a 10-minute walk helps.

Muscle relaxation also can release stress.  This process takes practice – we must actually learn how our bodies feel when they are at ease. 

• Practice sitting in a comfortable chair with your feet flat on the floor, take 3 deep abdominal breaths, and allow your body to relax more with each breath.  Extend your arms in front of you, keep the rest of your body relaxed, and clench your fists tighter and tighter.   Now, relax… drop your arms, letting them go completely limp. 
• Now practice with your facial muscles.  Again sitting in a chair, wrinkle your forehead as much as you can.  Can you feel the tension in your forehead and scalp?  Now relax and smooth out your forehead.  Imagine your forehead completely soft and smooth.  Next:  frown.  Can you feel the strain spreading throughout your face?  Let go of your frown.  Squeeze your eyes tightly closed.  Release and let your eyes stay softly shut.

These relaxation techniques can be used whenever your body feels stressed by taking a few deep breathes and focusing on releasing the tension you feel.    

Stress-Busters, Part 2

                

When a caregiver is feeling frustrated, frazzled, or overwhelmed walking away from the situation to ‘de-stress’ may not always possible.  There are a few quick and effective coping mechanisms that can be learned and adopted to restore our inner calm.  These skills require no special preparations or equipment; they are easy to learn with fast results and can be used for a lifetime.

The first is simple deep breathing.  When you feel a stress melt-down occurring, stop and focus on your breathing; begin by taking an extra long, slow, and deep breath through your nose; pause and then let a long slow  breath out.  Focus on the movement of your abdomen.  Take only 3 to 5 of these deep breaths or you may begin to experience dizziness. If dizziness occurs, stop the deep breathing and reduce the number of your breaths.  Deep breathing allows more oxygen to reach your brain and sends a signal to our brains associated with relaxation and calmness. This technique also slows down your response, allowing you to focus and increases your mental and physical resilience.  

The second technique is humor.  Having something to laugh about is a rapid way to calm inner stress.  This method takes prior planning:  select 3 to 5 funny memories and store them away for tough situations.  When your stress reaches a tipping point, take a deep breathe and “retrieve” a memory, allowing yourself to laugh out loud at the recollection.  Keeping things in perspective is essential.  Caregivers may face daily trials and tragedies that can steal peace of mind and happiness, so keeping humor in our day-to-day life will help to improve the quality of our health and life.   

The third coping mechanism is chanting. Repeating a few short and calming words or a short phase will allow mind and body to again slow down and relax.  Everyone needs to choose what works for them but several examples are:

• “I am a good person.”
• “This too shall pass.”
• “I can and I will.”

Stress plays an important role in how our bodies function.  It cannot be completely eliminated from our lives but the way we respond to stress can be changed.  Practicing these quick-to-use mind exercises can allow us to remain positive and healthy.  We also need to be gentle with ourselves.  No caregiver can be flawless and entirely selfless; we all do our best, and when things fall apart, we must find a way to pick ourselves and move forward, without guilt, recrimination, or debilitating stress.

Stress-Busters, Part 1

 A little stress is not a bad thing.  We all know people who do their best work under pressure … who need deadlines to avoid procrastination.  Stress is a basic part of daily living, and it can be motivating or exhilarating.


But chronic stress, similar to chronic pain, can impact every level of our lives.  Without a healthy release from this tension, the effects build up and may begin to appear as physical, mental or emotional symptoms.  The cost of stressful living is personally and socially staggering:

    * One-third of Americans feel they are living with extreme stress
    * One-half believe their stress has increased over the last 5 years
    * Almost half of all Americans report they have overeaten, consumed unhealthy foods or skipped a meal because of stress during the last month
    * Two-thirds of smokers report they smoke more when stressed
    * More than half of employees in a recent survey felt they were less productive when stressed; and
    * 75 percent of the same surveyed group reported experiencing physical symptoms when stressed, often causing them to miss scheduled work time.


Chronic stress symptoms may sneak up on the individual; sometimes the symptoms are attributed to other issues, like fatigue; at other times, the individual may believe that they are just “prone to” headaches or diarrhea.  The same source and level of strain may cause completely different reactions in each of us.  The sooner the stress is recognized and treated or resolved, the quicker we get relief and the less likely we are to develop more serious conditions like depression, high blood pressure or heart disease.


Everyone experiences stress differently and everyone copes with stress differently.  Some of us have learned to cope in healthy ways, such as walking away from an argument rather than losing our self- control.  This strategy is not denial or avoidance; it allows time to respond in a clear-headed manner rather than reacting emotionally.  Others may cope in ways that are far less healthy, such as uncontrollable outbursts, excessive alcohol use, or aggressive driving.  When the reaction to stress is self-defeating, self-destructive, and/or hurtful to others, the coping strategy is unhealthy.


The good news?  Coping skills are learned behaviors; generally, our coping mechanisms are based on  behaviors we observed in others as we grew up or habits we developed on our own as we matured.  We can choose to learn new and healthier coping skills.   


.                                                

Resilence

The last of the scans are completed and we have been blessed, the cancer is only in my father’s bladder.  There is a certain irony to feel such a sense of relief in the statement: “the cancer is only…”  We are well aware that the road ahead remains long with many curves to maneuver and hills to climb but at this moment we feel a sense of relief.

The primary caregiver shoulders many emotional tensions in addition to providing for the physical needs of their loved one.  Caregivers are concerned about the well-being of their loved one, the risks of complications and the potential outcomes that can drastically alter lifestyles.  The diagnosis of cancer or any other life-threatening disease does not make other life stressors disappear; sometimes unrelated worries can take a back seat during the acute phase of the diagnosis and sometimes these other concerns are the burdens that break a caregiver’s strength.  It is very important that the caregiver  is able to recognize their own symptoms of stress before it becomes overwhelming and to learn to develop or strengthen coping mechanisms. 

The $10 Dilemma

Ralph arrived at the ER with his blood pressure extremely elevated, his head and heart beating frightening hard and fast.  Controlling his blood pressure and relieving his symptoms were accomplished easily with medication soon after his arrival.  The attending physician, Dr. Lee, spent additional time with Ralph once he was stable to try to identify what caused this crisis was because Ralph had already been prescribed the type of medication that rapidly corrected the problem.  Reluctantly, Ralph admitted that he had run out of his medication and until his payday the following week, he did not have the $10 needed for the co-pay.  Dr Lee called me aside, handed me a prescription for Ralph’s medication then opened his own wallet and handed me a ten dollar bill to cross the waiting room to the pharmacy and obtain a month’s supply of the medicine needed to control Ralph’s blood pressure. 

Ten dollars prevented what would have in all likelihood progressed to a stroke or heart attack for Ralph.  The cost of hospitalization due to a stroke or heart attack, the potential loss of work and the possibility of permanent disability far exceeded the cost of the co-pay.  But in Ralph’s case, finding $10 was an insurmountable challenge that nearly caused a catastrophe.

Running out, skipping or splitting doses and sharing medications are all common and extremely dangerous actions individuals and caregivers may take to save money.  Many of these same individuals have chronic conditions, such as high blood pressure, heart disease and diabetes.  When they do not take their medications as prescribed, new health problems may develop; for example, the individual with high blood pressure may develop kidney disease or have a stroke or heart attack. 

As many as 20% of Americans do not take their medications as prescribed because they cannot afford them.   Individuals need to be honest with their health care providers if they are having money concerns that affect their health care needs.   Providers need to ask their patients if they can afford to fill their prescriptions and follow-up to ensure that the medications are being obtained and utilized as ordered. 

There are assistance programs available to make medications more affordable.  Pharmaceutical companies, insurance providers, state agencies, disease support groups and senior centers are often great resources for those needing assistance.  Discharge planners at facilities, community social workers and home care staff as well as physician offices can assist in initiating this process of medication compliance.  Online sites that may also help obtain prescription assistance include www.rxassist.org, www.needymeds.org, www.rxhope.com, and www.pparx.org.

Got Drugs?

There are numerous reasons why prescription and over-the-counter pharmaceuticals become unwanted.  Some reasons are avoidable while others are not.  Many people stop taking drugs due to side-effects, their lack of effectiveness, dosing or medication changes made by physicians or quicker recovery periods than anticipated.  Also, medications may have reached their expiration dates before they are completely used up.

These unwanted prescription medications can become a hazard in homes.   Each year tens of thousands of our children and young adults and confused seniors die from overdoses and/or accidental ingestion of prescription medications.

On a national level, estimates point to upwards of 200 million pounds of pharmaceutical waste being generated each year. The old, widely accepted advice to flush these materials is no longer acceptable.  Over the past few years, this waste has been detected in growing amounts in water sources around the country. The effect of this remains unknown on our health and the health of our children. 

Few practical and safe solutions currently exist for the safe disposal of unwanted medications.  The Drug Enforcement Administration has taken action and announced that Saturday April 30, 2011 is “National Drug Take Back Day”.  This initiative allows for the drop-off of unwanted or expired prescription medications, both controlled and non-controlled, as well as over-the-counter pharmaceutical products free-of-charge and anonymously.  For more details and location information of a drop-off site near you, check out: www.deadiversion.usdoj.gov/drug_disposal/takeback/index.html.   

The Strength of Hope

The wait was almost over.  Yesterday, I sat with my parents to learn the result of my Dad’s testing.  The scans they had done the week before were negative; there was no sign of cancer in his brain, chest, abdomen or pelvic areas.   My immediate thought went to a prayer of thanksgiving at the doctor’s words.   Dad has one more test, a bone scan tomorrow before a final staging of the cancer can be determined. 

His oncologist is an incredible professional with a caring manner she shares with the individuals and families facing this type of crisis.  She spoke softly and directly to us, maintaining eye contact.  Her choice of words were those that my parents could grasp; she repeated herself to clarify what was known, what was still unknown and what she would recommend.  She was patient with our questions and concerns. 

Just as my sister and sister-in-law had done on previous contacts, I asked questions written prior to the meeting and took notes.  It is hard to listen, absorb and remember when emotions are stirring.  Dad has time to consider her recommendations; she also encouraged him to get other opinions.  Understanding that every individual and situation is different, it is very important to give full consideration to all options before closing the door on them.   

The initiation of the actual chemotherapy was somewhat anticlimactic.  The infusion room was bright and calm; the nurses were friendly keeping their explanations simple and concise.  Other patients came and went as the day wore on; some chatted, others watched TV or read and a few napped.   My Dad’s anxieties diminished, he shared his thoughts with me at the end of the session; “I didn’t feel alone there”.  At the cancer center, he found a bond with others as each faced a similar battle against their disease.

Since this began, my father has found that well-meaning family and friends offer sympathy over his diagnosis and some share poor outcome stories.  He doesn’t want disheartening thoughts now, he needs encouragement.  He is strengthened by the love and confidence of his faith and family.

My Mother and I took the opportunity to take a ride and treat ourselves to lunch out during this time. When we returned we sat in a crowded waiting room with other patients, families and friends. We chatted with others, watched TV, read and shared newspapers.  

Caregivers can and should use of this time to care for themselves.  They may enjoy reading a book, watching television, making long overdue calls or treating themselves to lunch out, a shopping trip or a walk in the fresh air knowing that their loved one is in competent and caring hands.

Lend a Hand, Lend a Heart

                                      

While supporting loved one through illness or infirmity, many caregivers find a higher meaning and purpose for their own lives.  When their family crisis is completed, these family caregiver often look for other ways to help others.  These caregivers, like many retirees, find that volunteering is the perfect opportunity to re-employ themselves by participating in something they enjoy, to learn new life skills, or to give back to others. 

Every community offers many options for volunteers.   Organizations are appreciative of any amount of time offered, whether it is measured in hours or years.  The volunteer doesn't have to have special abilities to make their efforts invaluable, but those with unique talents are also needed.  Volunteer roles may range from: 

• Telephone calls or visits to the elderly and isolated living in their own homes or facilities.  A friendly voice, a gentle touch, a shared experience can brighten spirits;
• Delivering meals, running errands or transporting someone to appointments or shopping is a method of ‘checking-in’ and a great stress reliever for the homebound;  
• Assisting at senior centers, soup kitchens, and community food pantries can reassure an individual that they are not alone and that many care;  
• Helping out with correspondence or bill-paying; and
• Completing minor home repairs or making renovations for the disabled can make all the difference in an individual’s ability to stay in their own home.

Volunteering is not just about helping the elderly or ill.  Giving back is helping anyone who needs that extra hand of support.  Other opportunities may include:

·        Cleaning up or rebuilding a community after a natural disaster; 

·        Becoming active in local school functions and reading programs; or

·        Lending a hand to military families when deployment has occurred.

Contact your area senior centers, churches, interfaith groups or volunteer agencies.  Others may start volunteer groups to meet the needs of their community.  The payback is immeasurable for everyone involved.     

The Power of Giving

“Giving is the most potent force on the planet…and will protect you your whole life.”  Dr. Stephen G. Post, Stony Brook University

Giving of yourself to those you love is a gift, a responsibility, a challenge, and a life-changing experience.  Giving to strangers is also a gift:  we share ourselves with others, without expecting anything in return.  In the process of selfless giving, we so often end up receiving far greater gifts:  the gift of deeper self-knowledge, the gift of an enriched sense of personal meaning, the gift of improving the quality of our own lives.  Here is an example of the “giving” principle in action:

Edwin was a very successful businessman in our community and at least a decade away from retirement when his father became very ill.  In the last weeks of his father’s life, the family relied upon hospice services to keep their father at home. Edwin was amazed and deeply moved at the care and comfort the hospice team provided to both his father and the entire family.  At his father’s funeral, Edwin made a remarkable and life-changing decision.  He returned to his home, put his business on the market, and retired.  He didn’t retire to sit on the beach, play golf daily, travel around the world, or pursue other bucket-list passions.  Instead, he became a full-time volunteer for our local hospice.

How lucky we were that Edwin made this fateful decision.  When Edwin entered a hospice patient’s home, he was always greeted warmly – and not just because of the famously delicious oatmeal raisin cookies he baked weekly for the families (while keeping his recipe secret!).  He radiated warmth. He listened with the intent to care.  His empathy was extraordinary, because he understood from his own experience how deep a family’s anxiety and anguish could be. He helped patients and families find the good even in difficult times.  His laugh was infectious and his silence was healing.  He developed strong bonds with both male and female patients and family members.  Having Edwin on our hospice team was an incredible asset; he brought comfort to all of us. 

Through his own personal loss, Edward found a true calling.  He returned this gift by giving so generously to others.   Not all of us can change our lives as completely as Edwin did, but each of us is blessed with the opportunity to give.

The Diagnosis

My Dad is not a great telephone conversationalist.  Most calls last less than one minute and usually consist of, “Your Mother and I are heading to the track.”  Last Wednesday afternoon, he called me and his first words were, “I have bladder cancer.”  It felt as if all air and sound had been sucked out of the noisy office I was in.  He and my Mother had just left the doctor’s office after getting the report of the biopsy from his surgery of two weeks ago.  Now, they would have to wait for the hospital to call them to schedule more tests. 

I immediately prayed to God for my parents knowing this would be a rough road again for both of them.  Dad had open heart surgery last June when the extent of the heart disease was discovered in the pre-op work-up for this very same offending bladder polyp.  This meant that the polyp had been there for at least a year; when had it become cancerous?  He had experienced bladder problems for years now, was the cancer missed on previous examinations?  None of this really mattered; we would have to focus on what was now diagnosed.

After the call, I did what many would nowadays; I got on the internet and began to research bladder cancer especially the treatment options and the prognosis rates.  I also briefly spoke with one of the doctors in the office.  Being a nurse, I could comprehend what he was saying and what I read, but being a daughter I didn’t want to hear or read some hard facts. 

On Friday, my parents and my sister met with the oncologist.  My sister was prepared with a list of questions and she carefully documented the answers she received.  Thank God she was there for the support of our parents and her clear-headedness.  While my parents seemed to be coping well; my Mother later told me that she did not remember much of what was said.  I have been told that Dr. Lori was caring and honest with the information and the plan of treatment they would need to begin.  My Dad felt very comfortable and trusting of her.  Tough decisions had to be made by him that day.  Despite the stress from this meeting, his day was far from over.  He spent the afternoon and evening being scanned from head to pelvis. 

I visited with my family on Saturday.  My Dad looks good, strong and healthy which is a great way to begin the chemotherapy awaiting him next week.  I reminded him that he had survived Korea, almost 30 years as a firefighter, numerous other health issues and most recently his heart surgery.  He had questions, concerns and anxieties but more importantly he has faith and the belief that, “I will beat this.”  I had brought him the research information he had asked for and a journal that I hope he will use to chronicle this journey.  I also brought a journal for my mother as she will again be his primary caregiver. 

Waiting is rough; thoughts and emotions can be all over the place.  I have stopped my internet search, we will know more next week when all the test results are back.   Prayer is my release and my strength.   I know that my Dad is blessed with a loving and supportive family, good friends and neighbors.  It will be vital that we remain strong for him and my Mother as they begin this battle.      

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