Spring Cleaning Your Meds

Many of us greet the arrival of spring with a dust rag and mop in our hands, in an attempt to clear away winter’s clutter.  If you are a spring cleaner (and even if you are not), this is a good time to “refresh” the medication storage area in your home by discarding old or unused medications and restocking frequently used medications and supplies.

Where is your medication cabinet in your home?  If you are like most Americans, you are storing your prescriptions in either your bathroom or kitchen  –  the very worst places for medicine storage.  The heat and humidity in these rooms can quickly degrade medication.  Medications should be kept in a cool, dark place away from sunlight, heat, and moisture.  Medications should also be kept in a safe place out of reach of children, confused individuals, and pets. 

Medications are best kept in their original containers, but please remove the cotton that often is packaged inside the bottle with many over-the-counter medications! You should also:

•           Check the expiration dates all medications:  prescription, over-the-counter, vitamins and herbal  preparations.  They all have expiration dates.  If they are at or past that date, throw them out!  

•           If medications have changed in color, disintegrated from their original form, or have an unusual odor or taste, throw them out! 

•           If the medication is no longer being prescribed for or used by you or your loved one, throw it out!

•           Unrecognizable medications need to be thrown out, too.

Keeping any of these medications increases the risk of misuse by you or others. Some young people will experiment with unused or left-over prescription medications from their own family’s cabinet with dire consequences.  Also remember to remove any identifying labels on the medication containers before discarding them.  

Some individuals go on and off medications according to their health status or their doctor’s instructions.  If this is the case, remove these medications from those currently being taken and store them in a safe place away from other medications.  If these medications are restarted at some point in the future, always check that they are the correct dose and that the instructions for use are the same as currently prescribed.     

Do not share “left-over” medications with anyone -- even if they are prescribed the same medication or have similar symptoms.  The risk of serious interaction or allergic reaction is a very dangerous possibility.

There are some basic medications and first aid supplies you may want to have on hand:  over-the-counter medications such a mild pain reliever, antiseptic solutions, an antibiotic ointment, band-aids, and preparations for stomach upset, heartburn and diarrhea. You should always check with your doctor or pharmacist to make sure your choices will not interfere with your prescribed medications.  Always use over-the-counter medications according to the directions on the container unless your doctor has instructed you otherwise.

Following these simple guidelines makes quick work of spring-cleaning your medicine cabinet.

 

Prevent, Detect, Protect

Centuries ago, when the correlation between chimney sweeps, chronic exposure to soot and smoke, and the occurrence of scrotal cancer were made, drastic changes were adopted to protect the young children and men employed in that occupation. Cancer rates dropped dramatically.  Yet here we are, still smoking -- decades after smoking has been conclusively demonstrated to jeopardize our health and contribute to cancers, emphysema, asthma and prenatal damage. 

Researchers will continue to discover other causes of cancer.  Physicians will continue to develop more effective methods of cancer treatment. They and others will strive to determine the best preventive actions to fight cancer. Yet, we are ultimately responsible to act on their advice for ourselves and our loved ones.

Cancer survival rates are improving significantly, but there is still much to be done to increase the survivability of cancer.  How can we continue to increase the ranks of survivors and to prevent the occurrence of cancer and other life-threatening diseases?

•    Prevent. Smoking, obesity and inactivity are linked to a number of cancers.  These behaviors can be changed.  Prevention involves active participation.  It is up to each of us to act on these warnings and to follow the recommendations to avoid preventable cancers.  If watching a loved one suffer through surgeries, chemotherapy, and radiation does not cause family and friends to stop smoking, how can a warning label on a pack of cigarettes be effective? 

•    Detect. Yearly visits to your physician are important.  Preventive testing such as mammograms, pap tests, prostate exams and colonoscopies do detect cancers and pre-cancers.  A short period of discomfort or embarrassment is nothing compared to the physical and emotional pain cancer can bring to you and your loved ones. 

•    Protect.  Cancer survivors are at greater risk for reoccurrence of cancer and the development of secondary cancers.  Doctors, nurses, therapists and social workers can address more than the physical aspects of follow-up care; they can also help with the “AC” (after cure) emotional, financial, social and spiritual concerns survivors and loved ones face.  
 
What are you going to do today to fight against cancer and other chronic life-threatening diseases?

Cancer and Its Aftermath

Cancer changes everything.  Its aftermath is different for every one.  I share two examples; I would be happy to share yours as well.

Brian had been coming into the urgent care frequently for quite some time; his visits always coincided with the completion of a round of chemotherapy.  He was so sick when he arrived:  pale, dehydrated, feverish.  Often he was transferred to the hospital for further care and more time away from his family and home.

Brian was a sweet, soft-spoken young man in his mid-30s, married with 2 preschool-aged children.  When I met him he was almost done with the chemotherapy treatments for testicular cancer.  Once he would begin to feel better we would have time to chat for awhile, he told me that the doctors had already told him he would survive the cancer but the chemo was needed to catch any random cancer cells that may be left.  He felt that the surgery to remove his testicle was nothing compared to the agony of post-op chemo.  He always was so exhausted, he was depressed by watching his wife carry so much of the load; and his children’s energy wore him out and sometimes his tone was sharp with them, which only made him sadder. 

I also had the opportunity to meet Brian’s wife and two children.  Carol was quiet, worried and exhausted.  This battle was wearing her spirits down, too.  The little ones were precious, they stood near their father’s bed asking with their ‘inside’ voices if their daddy was going to get better and come home soon. 

When Brian successfully completed his chemo, his doctors had told him “the cancer was gone, the battle was won,” and he would regain his strength over time; he just had to be patient.  Yet Brian continued to have more complications.  One return visit was due to the development of a clot in his port, and another time he had an infection caused by the port.  They finally removed the offending port.  It was evident that he was slowly regaining strength, but he was still having side effects from the chemotherapy.  On one visit several weeks later he was wearing a baseball cap and refused to take it off; he had lost all his hair many weeks after the final treatment – the one loss he thought he had avoided.

I had the opportunity to see Brian and his family again several months later; they were bringing his son into the urgent care for an ear ache.  I would not have recognized him except for his shy smile. He looked good; he had gained some weight and was able to carry his little one, consoling him gently.  It was difficult for him to come back to the same building that held bad memories from the difficult days of chemo.  Yet he and Carol were quietly grateful and hopeful.  They shared their plans to take some time for a short family vacation before Brian returned to his work as a school teacher.

                                                           

Kelly and I had been coworkers and friends for several years.  She was a fun-loving woman with a wild head of short curly red hair and a mischievous yet caring nature.  Her cynical sense of humor and wicked laugh were a striking contrast to her gentle approach to our patients and her own four children.  Because she was such a fair-skinned redhead, she avoided the sun by wearing layers of sun block and large hats.  So she was very surprised when she finally went to see a doctor (at the nagging push of a nurse practitioner at the clinic) and learned that the pinpoint spot on her cheek was malignant melanoma, the deadliest form of skin cancer.

Surgeons operated immediately and believed they had removed all the cancer, but Kelly insisted on chemotherapy just to be sure.  She continued to work throughout her therapy, the infusion pump hidden under her scrubs discreetly infusing the medication, unbeknownst to those in her care.  Her spirits stayed remarkably strong.

A year later, still cancer-free, she celebrated with friends, but those closest to her noticed grave changes in her personality.  It was as if a meanness had crept into her spirit.  She was openly critical of friends and coworkers who had helped her during her cancer battle, complaining even about those who prepared meals for her family or those who had looked after her children while she had been so sick.  True or not, her words were very hurtful and bad feelings grew.   

Her anger mounted towards her family, too; it was as if she was on a mission to destroy those closest to her that had not also directly experienced the cancer.  She began to spend money wildly, choosing to refurnish the house rather than pay the mortgage owed.  She separated from her husband of 20 years, certain that he had been unfaithful to her during her cancer, despite having no proof.  She forbid him contact with the children, yet she herself was at odds with her children, complaining that they had emotional disorders. She tried to have the two oldest removed from the family home.  Despite concerns from many, she refused to seek any intervention for herself and her family, and she would end relationships with who voiced concern.  It was a nightmare to observe what was happening and to be helpless to intervene.  

Several years later, Kelly lost her life after a reoccurrence of melanoma.  During this last battle, her circle of caregivers was much smaller.  She had chosen to allow cancer to redefine her relationships, thereby surrendering the essence of her life well before her death.

The BC to AC Transition

“You are cancer free…the cancer is gone…you are cured.”

After long and torturous battles with cancer, an increasing number of cancer patients are hearing these remarkable words.

According to the Centers for Disease Control, 1 in 20 adults are surviving their cancer diagnosis; according to the National Cancer Institute, 1 in 5 seniors diagnosed with cancer are cured.  The most promising cure rates are for those diagnosed with prostate, breast, colorectal, bladder, and uterus cancer, because survival rates for these forms of cancer have tripled in the last 30 years.

In the face of such good news, it is perhaps surprising to know that being “cured” is not without its own unique challenges.  No one – no one – who experiences cancer is ever quite the same afterward.  The world is not restored to a “BC” (before cancer) state;  indeed, cancer survivors and especially their family caregivers should prepare for a new and challenging “AC” (after cure) state.

For many, “AC” is marked by a process of changes nearly as profound as the cancer itself.  Roles and relationships have changed (in many cases, roles have reversed, with the family caretaker now accustomed to being the dominant partner in the home); financial concerns can be overwhelming; and self-esteem and body image concerns might now take the forefront.  And always fear persists:  what if my doctor is wrong?  What if the cancer is metastasizing even now, unseen? What if it comes back?  “Cure” – the word they have prayed and longed to hear – cannot be immediately grasped or fully trusted.

Family caregivers must be attuned to and prepared for these changes and must continue to support themselves and their loved ones through the often overwhelming transition to life “AC.”  Caregivers may feel frustrated that their loved one does not feel an immediate flood of relief, joy, or gratitude.  Or, they may be shocked when a loved one’s immediate rush of elation just as quickly deflates into depression, worry, or prolonged anxiety. All of these emotions are legitimate: their bodies and their lives have been up-ended and assaulted in the treatment of cancer.

Caregivers must set realistic expectations and allow time to temper the rollercoaster of emotions they and their loved ones will experience.  The post-cancer issues – finances; responsibilities; spiritual, social, and psychological well-being – can be managed and alleviated with time.  Now more than ever before, caregivers must offer support to loved ones living with, through, and beyond cancer.

In transitioning from “BC” to “AC,” caregivers can rely upon assistance of many local, national, and virtual cancer survivor’s groups, including:

• National Coalition for Cancer Survivorship (NCCS; www.canceradvocacy.org) offers “The Cancer Survival Toolbox” that assists in the building of survival skills, with a focus on choices and control. T online video programs.
• The Cancer Keys to Survivorship (www.cancereducation.com/cancersyspages) also offers free video program on the important skills of living with, through, and beyond cancer.
• The American Cancer Society (www.cancer.org/Treatment/Survivorship.com) offers a cancer survivors’ network which focuses on general health, nutrition, physical activity and recurrence concerns.
• The Leukemia and Lymphoma Society (www.leukemia.org) offers help to survivors and families of these diseases.
• The National Cancer Institute (www.cancer.gov) is focused on emotional needs, prevention, and reducing the risks of recurrence.
• LIVESTRONG (www.livestrong.com) provides keys to survival, with a focus on  nutrition and physical activity, as well as coping with physical, emotional, financial and relations changes that may have taken place.

Survivorship is a new opportunity to live beyond the disease, to redefine and renegotiate our lives on new terms.  It offers cancer survivors and their caregivers the opportunity to grow, make lifestyle changes, appreciate every day, show love in new ways, and become prevention advocates.

Is TV Killing Us?

 

            Recent Australian research suggests it is.  Researchers found that each hour a day spent watching TV was linked with an 18% greater risk of dying from cardiovascular disease, an 11% greater risk of all causes of death, and a 9% increased risk of death from cancer.

           

            Why?  The primary risk is the sedentary nature of TV viewing.  The lack of physical activity is a major risk factor for poor health.

            Should Americans worry?  Yes.  Americans spend 28 hours a week watching TV according to one report…or more than 4 hours a day.  The Nielsen Company released a report in 2009 stating that American TV viewing was at an all-time high, and is boosted even higher by the fact that the average American watches 3 hours of Internet video a month.   TV viewing increases with age, when other factors also contribute to more sedentary life styles.

            Our digital addictions are dangerous, too.  According to AOL's E-Mail Addiction study, 40 percent of e-mail users have checked their e-mail in the middle of the night, literally sleeping with their blackberries, iphones, and other personal hand-held devices. This addiction increasingly disrupts normal sleeping patterns.

            The implications for family caregivers are clear and compelling.  TV often becomes a comforting ritual against loneliness, impaired mobility, and illness for our loved ones, especially the elderly.  It should not be the substitute for physical activity (even for the bedridden) and mental stimulation.

            We need to turn off, tune in, unplug…and live longer and better!
          

‘I’m Not a Doctor’

“…But I play one on TV.”

This slogan made for a catchy TV ad campaign – but it is generally a bad prescription for seeking professional medical.  Yet thousands of us turn to “surrogate doctors” for our medical advice.

Who are these surrogates?  They might include popular TV doctors or therapists, pharmacists, fitness trainers, wellness coaches, medical assistants in doctor’s offices, insurance case workers, social workers, the health food store clerk, our favorite health blog or website -- not to mention doctors, nurses, and other medical professionals we meet in social settings.  Even when these people are licensed, certified, well-qualified professionals, acting only on their advice can expose us, or our loved ones, to unnecessary risks.

The popular appeal of celebrity medical advice is undeniable and understandable.  We are strongly influenced by all popular media, and there is something highly accessible, personal, and soothing about the telegenic presence that comes into our home every day, giving us advice in simple sound bites, radiating warmth and charm, never making us wait, and never charging us.  Likewise, the pharmacist (or anyone working in the pharmacy) can be a convenient neighbor – the person you see regularly at the grocery store.  The nurse in your church group might provide a more sympathetic ear about the pains in your leg.  These surrogates appeal to those of us can’t afford to see our doctors, who are intimidated by physicians, or who don’t want to “bother” our doctors.  

What are the risks of seeking and following “surrogate” medical advice?  The chief risk occurs when individuals turn to surrogates in lieu of their personal physician, or when the advice of a surrogate contradicts the advice of your physician.  Most surrogates don’t know your personal medical history or your family history, they’ve not read your health records, they won’t know all the medications you are taking or what your doctor has specifically recommended.  Sometimes, they extrapolate based on their “hunches” or prior experience.  This happened with my mother, when a physician she met in a health-food store casually suggested (without benefit of any professional examination) that my mother’s complaints sounded like Celiac Disease, influencing her to drastically change her diet, which led to significant and counterproductive weight loss.  All based on a single, casual conversation! 

The helpful person at your pharmacy may not even be the pharmacist.  The medical assistant in your doctor’s office may be very bright, but she doesn’t speak on behalf of or in place of your doctor.  Most surrogates are well-intentioned (and some have no idea they are advising in lieu of a doctor), but they are reacting to symptoms without a fuller understanding of what the bigger problems might be. 

And bear in mind:  surrogates have no accountability for the outcomes of their advice.

Irreconcilable Differences

Judy was a divorcee in her mid-60s who had taken a retirement for disability from several years before.  She lived alone and had a variety of progressively worsening ailments – migraines, arthritis, poor eye sight, diabetes.  She was under the treatment of several physicians – for short periods of time.  No matter how well the relationship began, it was not long until she was shopping for a new doctor.  Her son Spencer, who lived nearby, began to notice not-so-subtle signs that suggested his mother consistently found cause to “fire her physician.”  The reasons ran an interesting gamut:  the doctor’s office forgot her appointment, the doctor did not want to treat her, the doctor refused to run tests, the doctor inappropriately touched her or made personal comments.  Spencer was a single parent who worked full-time and could seldom accompany his mother to medical appointments.  So he wasn’t sure if these complaints were real, or whether something else was happening.  Could each of these doctors be so incompetent?  How important was it for his mother to feel complete comfort and confidence with her doctors?  And what if she never did?

Judy’s situation may sound extreme, and many of us are more familiar with the opposite situation: loved ones who are extremely reluctant to change doctors, even when there appears to be good cause.  How long should you give a doctor before you decide to move on?  Is good chemistry a good-enough reason to stay with a doctor (or is lack of chemistry alone a reason to leave?)   As caregivers, how can we know when a loved one is experiencing problems serious enough to change physicians?  The decision may not be easy but a few considerations might help:

·        Separate chemistry from competence.  We have the right to expect both, but if we have a good track record with a physician and if a relationship of trust has developed, don’t allow a single incident of brusque treatment or an insensitive comment to be the deciding factor.  On the other hand, a sterling reputation or dazzling skill is not sufficient reason to stay with a physician if he/she is consistently rude, demeaning, impersonal, or insensitive – or if your loved one simply cannot develop rapport and confidence with the physician.

·        Try the three-question test: “Why is this procedure necessary?  What are the risks and benefits?  What are my alternatives?”  If your physician is unwilling or unable to answer these basic questions for your loved one, you have a right to find a physician who can and will.  These are not the only questions that matter, of course, and physicians should be willing to answer your questions – even if the answer is, “I don’t know.” 

·        Make note of patterns that are unacceptable.  We complain if the delivery company schedules an appointment and keeps us waiting for hours, but we are usually far more tolerant of physicians who misuse our time or show poor customer service.  Your loved (and you) are entitled to respectful, honest, and courteous care at all times.  If a physician keeps your loved one waiting more than 30 minutes for consecutive appointments – and especially if this occurs without explanation or apology – it could be time to move on.  If your physician does not provide test results without you repeatedly calling the office or if your physician disregards his own policy for providing test results, discuss the pattern with him directly.  If your appointments are rushed to the point that your loved one’s basic questions are not addressed, problems will ensue.  If his service does not improve, exercise your options to look for healthcare elsewhere.

·        Seek eye contact.  One of the simplest measures of a physician’s empathy and diagnostic skill is whether she will make eye contact with your loved one.  Far too many physicians appear more focused on the patient’s chart than the patient himself, often missing important nonverbal cues.  If your physician fails to make and maintain eye contact with your loved, particularly after you or your loved one has asked them to, you can expect the situation is unlikely to change and you should explore other options.  (And yes, you can prompt eye contact by simply saying, “Dr. Fisher, my father will be less anxious if you and he can make eye contact during the appointment.”)

·        Be confident about emergency and after-hours arrangements.  If your physician and his office staff have inadequate or unreliable arrangements for responding to you outside normal office hours, you should seek other options.

·        Be attentive and vigilant to any sign of inappropriate behavior.  If your loved one feels he or she was inappropriately touched or that questions were overly personal, make it a point to join them at appointments.  Be careful not to accuse or “investigate.”  Simply attend the appointment and be observant.  If you observe inappropriate action, report what you have seen to hospital staff (if it takes place during hospitalization) or to the appropriate medical board.  Whether you detect inappropriate behavior or not, if your loved one is insistent that it has happened and is fearful or offended, the relationship is unlikely to be saved.  It’s time to find a new doctor. 

·        Expect your physician to be familiar with alternative therapies.  Your physician should be able to describe the benefits and risks of such therapies, and how easily available they may be.  If your physician is unfamiliar with options that you have been able to research on your own, it could be a sign that he or she has failed to keep current or is reluctant to describe different courses of treatment.

·        Seek realistic hope from your doctor.  Some diagnoses are terminal; some diseases are incurable; some pain will persist.  But in every situation, your physician should be able to offer some level of hope or relief.  Be careful you are not seeking false hope, when immediate symptom relief is the more realistic option.

Balance these judgments with fairness.  Sometimes physicians run late; sometimes they are as rushed as we are.  Sometimes they do not have all the answers, sometimes a diagnosis may elude them.  The most important litmus tests are your loved one’s confidence and patterns of poor behavior.

Ultimately, the decision to change doctors belongs to your loved one, not you.  You can raise questions, discuss options, or probe for more information – but avoid imposing your views inappropriately. 

The Caregiver’s Promise

Caregivers, it is time to make a commitment…to yourselves.  Commit today to your own health and well-being.  Quit compromising your own health because you don’t have the time or energy.  The short-cuts you take today because you feel over-burdened will become serious health compromises more quickly than you think.  If you do not take care of yourself, you cannot take good care of those that depend on you

Make a promise to yourself that starting today you will begin to make your own health a priority.  Here are the essential parts of that promise:

“I will be an active partner in my own health care needs:

• I will make and keep appointments with my doctor. 
• I will be prepared with the questions and concerns I need and want answered.
• I will be open and honest with my doctor and expect the same from my physician.
• I will ask the questions and expect answers I can understand. 
• I will repeat back to my doctor the key points of our conversations.
• I will understand what actions I can take and I will make a plan to do what is needed. 
• I will ask for a second opinion when I think it will help me understand my condition better or help me to make a decision about treatment.”

Complete all preventative health care screenings and tests...take your medications as prescribed...keep your doctors informed of any reactions you experience with or without the medications...eat healthy...stay active...sleep restfully...stop smoking...avoid over-indulging in unhealthy foods and alcohol.

Care for yourself as you care for others,  It's a promise you must keep.

An Ounce of Prevention

Anyone who has ever cared for a loved one with diabetes knows the increased stress and caregiving needs the disease can bring. The complications of the diabetes - nerve, vision, circulation, kidney and heart damage - can have devastating effects on the individual and his caregivers.  If a loved one has Type 2 diabetes, their family members are also at risk of developing the disease. Other risk factors of Type 2 diabetes include being overweight, advancing age, being non-Caucasian and having hypertension (high blood pressure).

The symptoms of Type 2 diabetes seem harmless, but if these symptoms persist your doctor should be consulted:

• Frequent urination
• Unusual thirst
• Extreme hunger
• Unusual weight loss
• Extreme fatigue or irritability
• Frequent or recurring infections
• Blurred vision
• Slow wound healing
• Tingling or numbness in the hands or feet

Some individuals will be completely asymptomatic.

Caregivers can be especially at risk of developing Type 2 diabetes. Their days are busy but their level of activity is often in short spurts rather than regular exercise (and long stretches of their day may be sedentary, such as sitting at bedsides or waiting in doctor’s offices); easy to prepare meals and unhealthy snacks can take the place of well-balanced meals, which packs on the pounds; and too many time demands cause them to forego their own regular medical exams and preventative screenings.  All these factors can conspire to allow the disease to develop when it otherwise might have been prevented. 

Changing your lifestyle starting today is a big step towards diabetes control and prevention.   Here are a few lifesaving tips:

• Get more physical activity; it will help you lose weight, lower your blood sugar and increase your body’s sensitivity to insulin which keeps your blood sugar in a normal range.  Fitness programs work well, but when time is limited a 30-minute walk 3 to 5 times a week is a great way to get moving.
• Get rid of the extra pounds.  Every pound you lose can improve your health.  Studies have demonstrated that those who lost even a modest amount of weight (at least 5-10 percent of the initial body weight) and who exercised regularly reduced the risk of developing diabetes by 60% over 3 years.
• Get lots of fiber.  It will help improve your blood sugar, promote weight loss by giving you the sensation of fullness, lower your cholesterol, and decrease your risk of heart disease.  Good food choices are fruits, vegetables, beans, whole grains, nuts and seeds. 
• Go for the whole grains; they reduce your risk of diabetes and maintain blood sugar levels.  Many whole grain products are ready to eat and include breads, pasta products and cereals.  Read the label when you shop, the word “whole grain” should be on the label or be one of the first ingredients listed on the package.
• Make healthy food choices.  Fad diets don’t work in the long run and often deny your body of essential nutrients.  A better approach is portion control and improved variety in your diet.
• Get regular medical care.  The American Diabetes Association recommends screening if you are 45 or older and overweight, or is you are younger than 45 and overweight and have the risk factors of a sedentary lifestyle or family history of diabetes. Talk to your doctor about your concerns.

You have seen what diabetes can do to your loved one.  Don’t let diabetes take control of your life, too.

On the Road: Wednesday, March 23rd, 2011

   The Caregiver’s Caregiver is taking a road trip, and I hope you’ll come along. 

   I’ll be speaking on Wednesday, March 23rd for two special seminars located at: 

            The Turtle Creek Senior Center in Turtle Creek, PA at 10:30 am 

     and

The Forest Hills Senior Center in Forest Hills, PA at 12:30 pm

If you are in the greater Pittsburgh area, please stop by. We’ll also share caregiving   stories, insights, and experiences, and I’ll be happy to answer your questions.

If you are a family caregiver, or if you know and love someone who is, won’t you please join us (and spread the word)?  I am eager to meet you, there is no cost for this event, and no reservations are required.  If you would like to schedule a seminar for your group or organization, please contact me at caregiver2caregiver@gmail.com

REACH VA

Many families are struggling to care for loved ones with Alzheimer’s Disease and many   afflicted are veterans.  The family caregiver may not know where or how to seek help. 

The Veteran’s Administration (VA) recognized a need to help these caregivers and

designed a pilot program:  REACH VA (Resources for Enhancing Alzheimer’s Caregiver Health in the Veteran’s Administration), which focused on resources, training and the caregiver’s health and well-being.  It provided 12 individual in-home and telephone counseling sessions for veterans and their caregivers, five telephone support group sessions, a written caregiver quick guide with various topics addressed, education on safety and patient behavior management as well as advice on caring for their own health needs.  The program lasted six months and demonstrated success in reducing caregiver stress and improving care outcomes for veterans.  Caregivers participating in the pilot  reported that their burdens were reduced and they felt less frustrated and depressed; the veterans demonstrated decreased dementia-related behaviors.  The caregivers felt better informed, more confident and less alone as they now had a lifeline with the VA staff.  Supporting these caregivers allows the veterans to stay in their own homes surrounded by loved ones.  The VA has announced that it is now expanding the pilot program nationwide for veterans and family caregivers.

The VA is planning similar programs for caregivers providing care of veterans with spinal cord injury and traumatic brain injury.

Contacting local VA caregiver support coordinators is the first step in getting help.  You can get more information on REACH VA and other caregiver support groups on  www.caregiver.va.gov.

I hope this program will serve as a model to other health care providers; hospitals, home care agencies, insurance companies and government agencies to recognize and assist the family caregiver.

The VA also offers other assistance to caregivers and their loved ones in need:  adult day care, home care, hospice, respite, special equipment and home modifications for the disabled.  Contact the VA Caregiver Support Line @1-855-260-3274 for more information.  

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Brain Exercises

Have you ever forgotten where you left the car keys or halfway through a conversation lost your train of thought?  We often laugh about these “senior moments” but for many of us it is not funny.  The nagging concern over the possible development of Alzheimer’s Disease or any of the other dementias may have us frightened.  Is this happening to me?  Is this happening to my spouse?  What will we do?  Especially if we have seen the debilitation and despair of these diseases, the prospect is terrifying.

According to the Alzheimer’s Association, 13% of those over the age of 65, or 1 in 8 people have Alzheimer’s Disease.  New studies are expressing concern that 10 million baby boomers will suffer some form of dementia.

The Byrd Alzheimer’s Institute at the University of South Florida has listed several warning signs of Alzheimer’s Disease:

• Recent memory loss affects your daily activities or job skills.
• Difficulty in performing familiar tasks
• Problems with language
• Disorientation to time and place
• Poor or decreased judgment
• Problems with abstract thinking
• Changes in moods or behaviors
• Changes in personality
• Loss of initiative

If you or a loved one is exhibiting any of these symptoms it is very important to be further evaluated by your physician.  There are other causes that could also exhibit these symptoms.

Researchers of brain health and the dementias reassure the boomers that those “senior moments” of instantaneous memory loss is just temporary forgetfulness usually caused by stress, hormonal changes or mood fluctuations.  In general, losing the car keys is not a precursor to dementia; forgetting what the keys are for may be.   

These memory lapses are a sudden reminder that our brains need exercise just as our bodies do to stay healthy as it ages.  We cannot control genetics or aging but we can improve our brain function and possibly delay the onset of dementia by:

• Exercise.  Increasing the blood flow to the brain is the most important factor in keeping it healthy.  The American Geriatrics Society recommends exercising for at least 30 minutes, three times a week.  You could try walking, gardening, swimming, cycling or dancing if a more strenuous or formal form of exercise is not an option.
• Stimulate your mind.  Read a book, newspaper, subscribe to a word-of the-day or “this day in history” site to challenge your brain to learn something new.  Word search and crossword puzzles as well as video games improve your visual and decision making skills. Building a model or beginning a new craft will also keep your mind fresh.
• Eat a well-balanced diet.  The same cholesterol that clogs your heart’s blood vessels will clog your brain’s vessels.  Eat more fruits, vegetables, and protein foods and limit your fat intake.  Adding B vitamins and omega-3 fatty acids (available everywhere) to your daily regime may help too. Stay hydrated by drinking an adequate amount of fluids each day.  Enjoy your coffee drink as coffee has been now proven to increase brain activity, short term memory and concentration.
• Get enough sleep and reduce stress in your life.  Lack of sleep and high chronic levels of stress will impair memory, learning, concentration and increase your risk of accidents and illness.  Twenty minutes a day of prayer, mediation or yoga can also help decrease stress.
• Stay connected.  Keep in touch with friends, family co-workers.  If you are retired and feeling isolated, consider a part-time job or volunteering in your community.  Enjoying new adventures, like traveling to new locations with others, is another way to keep your mind stimulated.
• Review your medications.  Take all your medications, including vitamins, over- the-counter and herbal preparations to your doctor or pharmacist to evaluate for possible interactions that could cause memory loss or cloud your ability to concentrate.  Always ask your doctor before beginning any new drug or supplement for possible adverse effects.
• Limit TV watching.  Keep your viewing to less than seven hours a day.  Just watching hours and hours of TV is like putting your brain on auto pilot; most programs do not offer much stimulation of those vital brain cells.

Above all:  don’t live in fear.  If you are worried about your memory, talk to your physician.  Don’t let your senior moments be fearful moments.

Many Medications, Many Opportunities for Error

Ralph was the sole caregiver for his wife who was suffering from dementia.  He had health problems himself especially with his vision.  Overall, he was doing a good job balancing household and caregiver duties.  He had designed “his and hers” poster boards of medications to make it easier to fill their pillboxes.  He taped a specific pill on the board and wrote in large letters the name of the medication and when it was to be given, it was much easier to match the pills this way than to try to read the small writing on the prescription bottle weekly.  My biggest concern with this method was what would happen if the pharmacy changes suppliers and the size, color or shape of the medication changes? Would Ralph recognize the change?  Or would a medication error occur?

A recent study observed highly-educated individuals at the average age of 63 and their ability to organize medications for daily use.  They were instructed to place 7 different prescription medications in a weekly pillbox according to the labels on the bottles.  Only 15% of the participants got it right.  Medication errors – including missed, doubled, or incorrectly administered dosages – are more frequent than one might think and highly dangerous.  

Consider the conditions that lead to medication errors:

• The first is the sheer number of meds an elderly person takes. Individuals over the age of 65 are prescribed on average 20 prescriptions a year, not counting over-the-counter medications which only add to the confusion. 

• The second conditions of concern are the visual, cognitive, and dexterity impairments and literacy limitations that can increase the risk of mistakes.

• The third condition of concern is the confusion caused by medication instructions.  A study demonstrated that medications with identical instructions -- “take one tablet by mouth three times a day” -- were arranged incorrectly by nearly one-third of the participants.  There is a new movement to standardize the way prescriptions are written; instead of the label reading “take one every 12 hours” or “take one twice a day,” the new label would be written as  “take one tablet at 8 a.m. and one tablet at 8 p.m.”  Even with these new simplified directions, health literacy should not be assumed.  Supplemental instructions from the physician or pharmacist are needed to ensure understanding.    

Instructions to individuals and caregivers need to be specific and exact.  In the absence of specificity, I have witnessed these medicine misadventures:  rectal suppositories labeled “insert one daily” being swallowed because the patient did not know what a suppository was; an individual instructed to practice injecting insulin by using an orange -- a common practice -- was then eating the orange as he did not understand that he was to inject the insulin into himself; another individual who accidentally overdosed with a pain medication because one caregiver forgot to tell another caregiver that the individual had already been given their pain medication. 

Communication is as always vital. To avoid bad outcomes, it is not enough to ask the patient if he understands; ask him to repeat the instructions and demonstrate what needs to be done, and leave specific instructions of when medications are due or when medications were last given.

Life-Saving Health Literacy

An estimated 90 million American adults have difficulty understanding and using health information.  The reason for this is not stress, fatigue or confusing instructions, it is the inability to read and understand what is written.  The epidemic of health illiteracy is not confined to the poor or elderly and it is of grave concern to health care providers because of the dangerous consequences to the individual.   The strongest predictor of an individual’s health status is not age, race, or ethnicity but literacy.

 

Many are embarrassed or ashamed to admit that they cannot read or do not understand what they read.  Others learn to make excuses for this obstacle, “I forgot my glasses” or “I don’t understand what to do, can you explain (show) it to me?”  And some patients normally capable of reading and comprehending begin to experience challenges with the strange lexicon and fast pace of the healthcare industry.

Asking questions like, “Can you read?” or “Do you understand this instruction?” can be awkward for both the individual and the health care professional.  Yet knowing the answer to those questions is imperative because individuals with low health literacy and comprehension are less likely to comply with prescribed treatment and self-care regimens.  

There are a variety of tools in use that can evaluate an individual’s ability to read and understand.  In health care, we often look for a tool that is quick to use and easy to evaluate.  One simple assessment includes asking an individual to read a food label and then asking them questions to determine if they understood what they read; for example, if the label says the product has 100 calories per serving and there are 3 servings in the box, how many calories would they consume if they ate the entire box? Or asking them to pretend they are allergic to peanuts, and then asking if they could eat this product based on the label?  This is more than a reading and comprehension test; it is an important health education tool related to nutrition.  Food labels are tricky for anyone to understand.  A new initiative will soon require the most important facts regarding the product be displayed in an easy-to-read label on the front of the food container.

Developing an appropriate plan to teach the individual what they need to know to regain and maintain their health can be accomplished despite their literacy challenges, but the process is made easier if the family caregiver makes health care professionals aware of the individual’s inability to read or comprehension challenges.  To compensate, healthcare professionals may use picture-based tools and techniques, like pictures to describe symptoms or facial images to demonstrate differing degrees of pain.  Or they may ask the individual to repeat the skill they have been taught several times. 

There are many creative options to help patients who cannot understand written instructions.  These techniques can easily be taught and used by family caregivers.  The first step is simply to express the need.  The most important words any patient can express are these, “I don’t understand.”   

Special Needs Families, Part III

I was recently introduced to an online support group, the “CF Mamas,” by a friend who has a beautiful six year old daughter who is living with cystic fibrosis (CF). 

I have known my friend for several years and have watched her struggle to provide the care her child needs, be a good wife, and balance a career as a nurse.  I watched her carry their second child, another beautiful little girl, reassured after long months of waiting that this little one did not have cystic fibrosis.

My friend doesn’t complain about the endless responsibilities she faces every day to keep her daughter healthy.  She doesn’t complain about the time she can’t spend with her husband, family or friends.  She doesn’t complain that her beloved career has been put on a back burner.  She is devoted to her family of four.

She struggles at times with a school system that opposes her requests for basic hygiene between kindergarten classes.  She vents her anger at the walls of resistance she must climb to get answers at times from health care providers.  She voices frustration at the lack of support she must cope with from her siblings.  She shares her anguish that pharmaceutical companies do not consider cystic fibrosis an important-enough disease for research and development of life-saving drugs because of the “small numbers” affected.  Parents of these children have been doing their own fundraising with the support of the Cystic Fibrosis Foundation for research and support.  They recently received a huge helping hand from the Bill and Melinda Gates Foundation to advance their goal of a cure.

I had believed that most parents with CF kids had similar stories and struggles.  I was unprepared for some of the stories they shared on the “CF Mamas” network:  mothers with several children with CF, single mothers carrying the burden alone, mothers of children not afflicted with other birth defects in addition to CF.  They were open about their experiences, their struggles, their sorrows and their joys.  They were deeply supportive of each other; finding humor and small rays of hope in their demanding days. 

I asked this question of these gracious women:  “Will you share one piece of advice that you would give a new parent of a child with cystic fibrosis?”

  

• “Let them live. Let them be normal kids who have to keep up on meds and treatments to keep themselves healthy. Let them play outside, run with their friends, tackle the cats, throw a snowball.”
• “Let them do as much as possible without being held back. Even though she has to do her treatments and take a lot of medicine she can still play and do the same things as other kids. The harder she plays the better it is for her. Keep them as active as possible. Love them and encourage them everyday to do their best and to reach for whatever dreams they have.”

• The child has a disease, they are not a ‘diseased’ child.  Trust your gut, and make sure you kiddo KNOWS that you love them and they are NOT a burden to you. Fight CF with everything you have; doing treatments, giving meds, but appreciate the amazing gift you have been given.”
• “My biggest advice is don't let others criticism of how you decide to deal with the illness influence you, it is a difficult disease to understand -- what is and is not healthy for a CF child...so until they've sat in that room with you and gotten that news of a diagnosis of CF and all the care that goes with it...let their criticism roll of your back.  Do what you know is right, do what you as the parent feels is right.”

I want to thank these mothers for taking precious time to share these wise words.  These same questions could be asked of any group of parents of a special needs child and I am reasonably sure their responses would be very similar.

As a nurse and caregiver, I would offer this advice to parents of special needs kids; as soon as a diagnosis is made, begin the process of learning.  Learn all you can about the disease you and your child will be facing.  Seek the advice of your own doctor and also of the medical experts at the closest children’s teaching hospital.  Ask for the assistance of the social worker at the facility: what special equipment will you need? what in-home assistance is available? what financial help is obtainable?  Write down your questions, take someone with you to listen, record what is said, and ask for any literature they have.  Contact the national foundation for the diagnosed disease and discover where the nearest local support group is.  Go online; the internet has become an invaluable source of information and support.  Develop your own team of caregivers for you and your child; while your supporters may not be able to fill your shoes on all the tasks required, teach them what would help you most, ask them for what you need and accept what they can offer.