On the other end of the spectum however, is anorexia nervosa. Anorexia is simply a loss of appetite, yet anorexia nervosa is a disorder characterized by a fear of becoming fat, leading to a refusal of eating food, or at least eating enough for a person to remain healthy. Even though many cases are seen in adolescence, it has been found in children as young as seven. This (and other eating disorders) have a physical, behavioral and emotional component. Some symptoms to look for in those with anorexia include the following:

• being 15% below ideal weight
• fear of becoming overweight even though they may be normal weight for their age and height
• a distorted body image
• unusual avoidance of food, monitoring what is being eaten or eating in very small amounts
• excessive exercising
• menstrual cycle may be irregular or stop (missing at least three in a row)
• frequently feeling cold
• dry skin, thinning hair

Where children are concerned, it’s especially difficult to determine if the child is just a “fussy eater”, or perhaps just going through a growth spurt. Yet if you suspect your child or someone you know may be anorexic, it is important to speak to the parent and/or pediatrician right away. Sometimes a parent may suspect, but are not sure until someone else observes signs that there may be a problem too. If it’s discovered a child does have a problem, professional treatment may include a medical doctor, nutritionist as well as a psychotherapist. For more information about anorexia nervosa, contact the National Association of Anorexia Nervosa and Associated Disorders.

Many years ago I worked with a child who had been diagnosed with a terminal leukemia. He was the oldest of four children, an incredibly bright and talented boy, his family routinely referred to him as the “voice of reason.” He was remarkable. Always polite and concerned for his parents and siblings, he kept his role as the family’s pillar of strength until the very end of his life.

He made the decision to die at home. His parents obliged. As a parent I can see that this must have been painfully difficult for his parents. The last wish is something many loved ones struggle with, but his family accepted it. He lasted only a short time at home but during this time his loved ones were all around him.

How can a smart phone be used to help others?

Yes, I’ve posted a blog about how caregivers can use some iPhone apps during the course of their care with their loved ones, but those apps can enhance the experience of caring. They do not replace real presence. It’s one thing to hand the phone over to a loved one so he or she can watch a You Tube clip of a classic movie while the caregiver completes another task. It’s a whole different experience to watch the clip together, to share the moment as one.

If my mom had a choice between a week of text messages from me wishing her a good night or a 30 minute back rub, I know she’d take the back rub. Caring touch is deeper. In some cases touch (in the form of massage) can diminish pain and anxiety. The research backs that up. As a culture, we’re still accumulating data for the positive effects of mobile apps and smart phones devices.

The National Alliance for Caregiving and United Healthcare “found more than two-thirds of family caregivers who have used some form of technology to help them with caregiving believe web-based and mobile technologies designed to facilitate caregiving would be helpful to them.” The article doesn’t indicate the kinds of technologies that would help. I’m sure there are many effective uses that will benefit caregivers (and already do), but we need to consider the patients too.

If an insurance company offered to give my mom a tablet device with cool apps to document her daily blood pressure and caloric intake for three months OR biweekly visits from a professional trained in guided imagery and massage, she just may go with the real person. In fact, charting the data would require more work for her; whereas, the holistic practitioner would allow her time for self-care and rejuvenation. Each option promotes health, but different individuals may select one choice over the other.

So as we move further into this age of technology, how do we ensure that tech doesn’t replace the importance of touch? How do we balance the two?

Below, one of our wonderful Girl Scouts shares some thoughts on what this program means to her. Her words provide an interesting insight into how the kids’ perceptions have changed as a result of the time they’ve spent here. ( Plus, I love what she calls our seniors!)  Enjoy.

“Hi my name is Nikki G! I am a student at a local high school and while I participate in many activities, I am most proud of my community service as a Girl Scout. Here are some of my thoughts on our experiences with seniors at VNSNY.

My troop has been visiting the VNSNY CHOICE Adult Day Center for the past three years. You can say we adopted the “seasoned classic VNSNY elders” since 5th grade. Before I went to VNSNY, the only seasoned classic people I was comfortable with were my grandparents. I thought the VNSNY elders would not understand a youth perspective. But after going to the center and talking with the seniors, my views have changed about them and they are “cooler” than I thought. I have a greater respect for seniors because I know that they went through a situation similar to my own and are always a source of advice.

What I like about coming to this Center is the excitement that I see in the seniors’ faces when we are visiting, how much fun they are having and talking with them about anything. My troop is planning a fun event this year for the seniors — a tea party, a talent show and an intergenerational, hands-on activity. The tea party will be a combination of fancy, fun and proper. We will showcase a new set of talents that the Girl Scouts have been practicing for several months. The hands-on activity is a surprise. We have also agreed to allow a local Cub Scout Troop to help us in this year’s activities. Can’t wait! SEE YOU SOON!”

But how should or can a person, or a society, react when those who have died number in the thousands or tens of thousands? The televised events at the time of the Pope’s death suddenly roared back into my consciousness as I’ve watched and read about the tragedy unfolding daily in Japan.

The natural disaster in Japan and its aftermath evoke reactions at multiple levels, from horror that such a thing could happen at all to relief that it didn’t happen here to the pricking of the thin protective shell of our own mortality. Life can change in a moment, and it did for the people of Japan. It’s almost too much to bear. Too many lives lost, too much destruction and displacement — entire families, towns and prefectures literally wiped away as if they never existed.

So, how does the human spirit absorb and process such trauma?

Remember, the catastrophe in Japan is viewed over the same medium (television) that broadcasts nonsensical reality shows about survival or dysfunctional families. Regarding the ever-present “breaking news”, one can simply change the channel and watch something else, as if changing the station somehow diminishes or extinguishes the suffering. We can watch the unfolding events in the Pacific without a break, making ourselves numb participants in the global tragedy. Or a third approach is to disengage completely and choose not to view any of the unfolding events.

It’s safe to say that we live in an increasingly small world and that major events have global impact, including potential impact on our daily lives. The media brings distant events into our living rooms with live and constant coverage, immersing people in the details of tragedies, local and far-flung.

We might experience fear and anxiety over uncertainty of the future; we may have a sense of helplessness and feel out-of-control as the normal life stresses of job and family continue unabated or seem exaggerated. We might feel confusion from losing the assumptions we have about the world as a safe and predictable place.

While grief-responses do not flow in a straight line, we can look at certain sequences that occur after such a global tragedy. After the initial crisis — the shock and visceral response to the earthquake and tsunami — both individuals and groups of people begin to process the events in some way. It is important to be honest with how we are feeling about the tragedy — frightened, sad, angry, confused. Talk about the feelings with family or friends. Listen to how they are feeling. Look for common elements that flow between us and bind us together. Another important step is the “What can I do?” response. Here are a few suggestions:

• Allow yourself to reflect on the situation and understand why you feel the way you do.
• Take time to give gratitude for the good in your life right now — kiss those you love and let them know how you feel about them.
• Exercise compassion towards those you live, work or recreate with.
• Find a way to offer support to those who have survived the disaster (make a donation, volunteer, pray).
• Surround yourself with people you love and trust and who will allow you to express your feelings.
• Recognize that your visceral response to a global disaster may be a sign of unresolved grief from events that personally affected you in the past. If this is the case, give yourself permission to do the work of healing now — it’s never too late and you are worth it!

The lives of the dead, though they may number in the thousands, are important and should be honored. Our global community is becoming smaller every day thanks to increased travel and the likelihood of knowing people from different countries and cultures. We are connected to people around the world because we are human beings sharing similar hopes and dreams.

May our connectedness help us to celebrate our commonalities and rally us to be a force of hope in a world filled with uncertainty.

Peace on the journey,

Vince

Resources to explore:

www.hospicefoundation.org

www.whyy.org/widerhorizons/caringcom.html

www.redcross.org/services/disaster

www.nvoad.org (national voluntary organizations involvement in disasters)

www.imhi.org/dealing_with_disaster.html for helping children with disaster

There are many recurring themes in all of those stories. Each depict caregivers as selfless, compassionate, hard-working, resilient individuals who are truly inspiring to their friends and family around them.

Many have given up their weekend free time or even their jobs to care for someone. One husband gave up his dental practice to care for his wife. Another mother stood by her young son after he had a stroke. One story celebrated the magnificence of a hired caregiver who became an extended member of his client’s family.

Some of the caregiver stories stress the importance of advocating for their loved one. For example, the “MomCologist” has championed for her young daughter, who was diagnosed with cancer, by learning about her daughter’s cancer, treatments, lumbar punctures and more while keeping notes about day-to-day medical events. She also had to quit her job in order to be with her daughter.

All of the stories exemplify the power of love.

It’s important for caregivers and those who know caregivers to continue to share their experiences. Health care organizations need to know what caregivers are going through in order to provide necessary education and support. Politicians need to know about all of the sacrifices that are made to care for someone, so that policies can be created to make things easier for caregivers. Not everyone is able to quit his or her job. Other caregivers need to hear about the hardship and joy of supporting a loved one through illness, so they don’t feel isolated.

Keep telling your stories!

1. Cleveland Clinic Stress Meditations (Cost: $1.99) You can choose from eight different meditations including a Body Scan Relaxation, a Mindfulness Meditation and a Calm Mind Meditation. Play the tracks for yourself to ease stress, or for your loved one, to promote comfort and healing.

2. Crock-Pot Slow Cooker Recipe Finder (Cost: FREE ) In A Caregiver’s Cookbook, I recommended using a slow cooker to create tasty meals with minimal preparation and cook times. This app allows you to find some recipes for a slow cooker with ease. You can search by meal course, ingredient or even size of the meal, in quarts. Unfortunately, recipes are not specific to health conditions, so use with caution. (As soon as I find an app with that function, I’ll post it here.)

3. Green Smoothies (Cost: $1.99) This app allows you to create smoothies from ingredients available to you. Nutritional information is also listed for each smoothie.

4. Family Health Notebook (Cost: $0.99) Log medical appointments for you and your loved ones including doctor’s name, reason for visit, symptoms, diagnosis by physician and treatment or medications ordered during the visit. You can also write additional notes pertaining to the visit, then email the entire encounter to yourself or other family members.

5. Mindfulness Meditation (Cost: $1.99) Need help learning how to be more mindful? Try this app to practice mindfulness in 5 to 40 minute increments. The app also includes useful tips to cultivate mindfulness.

Test them out and tell me what you think. Do you have any suggestions for apps that are useful for caregivers? Please share them below.

(photo by Craig ONeal)

What is mindfulness?

Mindfulness is a type of awareness meditation. The purpose is for you not to focus on anything but the thing you are doing at the moment.

That may sound simple in theory but we all know life is full of distractions. A walk in the park may be interrupted by a text from a spouse, a phone call from work, or even your own thoughts may be a distraction. Mindfulness encourages you to just take a walk. And that’s it.

Thich Nhat Hanh who wrote The Miracle of Mindfulness suggests that one way to be aware of the moment is to be aware of your breathing.

I recommend to begin your mindfulness practice by taking three to five deep breaths and focusing your attention on the breath itself. Notice how when you breathe in the air, it passes through your nasal passages and into the back of your throat, down your chest and bronchus and into your lungs. Become more aware of the expansion of your lungs and the movement of your diaphragm. Hold the breath for a moment, then exhale while noticing the muscles surrounding the ribcage assisting you in the exhale and the sound of the breath as it exits the nares.

You will increase oxygenation to your cells, promote relaxation and hopefully feel a clearer mind in the process, while doing focused breathing exercises.

What if I get distracted during mindfulness?

Ok, so you feel distracted or restless or worried through the exercise. Acknowledge it (”I am worried”) and return your focus to the breath. Try not to judge your thoughts. Your thoughts are a part of you too. Instead, attempt to return to the movement of your breath. The more you do it, the easier it will become to center yourself.

What other ways can I practice mindfulness?

In Avoid Caregiver Burnout!, I suggested that if you’re unable to take a period of respite away from caregiving obligations then you may need to find creative ways such as drinking chamomile tea, listening to a favorite song or lighting a candle as opportunities for self-care. Thich Nhat Hanh proposed that each of our activities are opportunities to strengthen our awareness in the moment.

If you have time to sip some tea, then do just that. Start with a few deep breaths; then, take a sip noticing the temperature of the cup between your hands, the rise of the steam from the surface and the taste of tea leaves as it absorbs in your mouth. Do nothing but what is you’re doing.

What is presence?

Presence is an outward focus of awareness. You are going within to center yourself in mindfulness in order to stay in the moment, whereas presence requires your attention to be turned toward the person you are caring for as a caregiver. It is to be fully aware for someone else. This is an especially helpful practice if you are providing physical care to a loved one, as it promotes patience and compassion.

Again, remove yourself from possible distractions as you provide care. Turn off your cell phone or the television as you feed your ill parent. Make eye contact as you administer medications. Listen to your loved one’s words, hear his or her sounds, notice the temperature of the skin as you turn or transfer a loved one. Listen to what it is he or she is saying to you. Try not to interrupt. Be in the moment of the connection and set an intention of love.

Mindfulness and presence inspire you to slow down. You can only do so much at one time. Each can be effective ways to deal with the stress of caregiving while promoting your own health and wellness.

Have you used mindfulness or presence as a caregiver? I would love to hear from you.

Home care nursing is special in that the goal is for you or your loved one to be in the comfort of your own home while receiving more treatment. Health-care technology allows your home to be a center of care, although it can certainly add an additional layer of stress for the caregiver.

What are some technologies that may be used in the home care?

• Wound Vacs – a negative pressure vacuum wound therapy which accelerates healing of specific surgical, traumatic, diabetic, and pressure ulcers.
• Feeding Pumps - a machine that allows liquid supplements to be infused through a feeding tube for patients who are unable to take fluids by mouth due to a stroke, cancer or other chronic diseases.
• Infusion Pumps - an electronic pump which administers liquid medication through tubing to an IV or port in the skin. Medications delivered may include antibiotics, liquid nutrition and fluids, chemotherapy, and other drug therapies.
• Oxygen Machines – compact electric oxygen concentrators which provide oxygen to people with Chronic Obstructive Pulmonary Disorder or Congestive Heart Failure via a nasal cannula.

As a caregiver, you may be taught by the nurse how to use one of the above technologies to support your loved one’s healing. The teaching may begin in the hospital, so make sure to ask the hospital nurses to demonstrate how to use the technology before your loved one is discharged. Once you and your loved one are home, homecare nurses and telehealth nurses (for after-hours support) are available to provide ongoing education regarding the above therapies and monitor the area or condition for improvement.

Still, there are many things you as caregiver can do to enhance your comfort and understanding when assisting your loved one with healthcare technology.

The Healthcare Technology Checklist for Caregivers

• Save all pamphlets and reading material provided by the hospital, home care agency, and manufacturer of the product. They provide helpful troubleshooting tips if there’s a problem.
• Ask the nurse to demonstrate use of the technology and then offer to do a return demonstration while the nurse is present. Hands-on experience with a device will improve your comfort level so you can support your loved one.
• Write down a list of steps in your own words so that you can refer to it if you forget something in the future. Plus, if you write it down, it can unclutter your mind.
• Search manufacturers’ websites. For example, many wound vacs are provided by KCI which has a website full of helpful information. The more you understand how something works, the more comfortable you will become using it.
• Seek out caregivers’ support groups. Talking with other people who are dealing with the same pressures of caregiving may reinforce that you are not alone and you have the support in a community. Verbalizing your fears may lessen their power over you.
• If a machine or pump malfunctions or alarms and you’re not sure how to resolve it on your own, call the homecare agency or manufacturer immediately so a nurse or tech support can assist you over the phone. In some cases, waiting until the next day for help may affect your loved one’s ability to heal.
• Keep asking questions! If you’re not sure about something, write it down, and ask the nurse.

Are you a caregiver who assists your loved one with a healthcare device? What do you do to increase your understanding and cope with technology in caregiving?