Twenty-four-seven

When caregivers are on call 24/7, they are often so selfless in their care of a loved one that they neglect to take care of themselves.

Did you know caregivers have a higher than normal incidence of getting sick? They often become so depleted they cannot maintain the stamina to continue caring for another person. Don’t let this happen to you.

Ten Tips to Nurture YOU

Follow these 10 tips to nurture yourself physically, mentally and spiritually every day, even when you are at the bedside of another:

1. Eat well-balanced meals on a regular schedule. Take a daily multivitamin. Drink 6-8 glasses of water a day.
2. Exercise every day, even if it is simply 15 minutes of stretching, yoga, calisthenics, or a short walk. Use the stairs to keep your circulation going.
3. Get outdoors, even briefly. Fresh air renews the body and spirit. When possible, open a window.
4. Strive for a minimum of seven to eight hours of consecutive sleep in a 24 hour period. Nap when your loved one naps.
5. Get treatments for your own aches and pains before they turn into something more serious.
6. Pay attention to your own feelings and emotions and seek counseling if needed.  Vent feelings to trusted family members or friends.
7. Take time for yourself. Use relaxation or stress management methods such as meditation, visualization, and yoga. Books and videos are available to guide you in these techniques.
8. Read, pray, or meditate for at least 15 minutes per day. Read daily prayer books and helpful magazines to uplift your spirits. If religious, seek the counsel of a religious leader you trust and respect.
9. Laugh, reminisce, and share stories of happy times.
10. Ask for help. Friends, family, and religious groups are often eager to assist and are only waiting to be asked and directed. Doing everything yourself deprives another of the opportunity to serve.

Following these tips will help you find the health and happiness you deserve. And when you care for yourself, you can care for your loved one even better.

Article by Leann Thieman, a certified speaking professional, author, and nurse. To contact Leann visit her website at www.leannthieman.com.

Latest Clinical Research

Dr. Katherine Siminovitch of Mount Sinai Hospital in Toronto, Ontario Canada is undergoing research for WG. The purpose of this study: ‘Identification of Novel Wegener’s Granulomatosis Susceptibility Genes’ is to identify the genes that confer risk for disease. The study has already identified variants in three of the genes studied and determined them to be significantly associated with WG. While we are continuing to assess other gene variants for their relevance to WG, the study needs at least 250 more WG patients to donate samples to have sufficient data to develop results. It is very simple to participate in the study. Patients enroll in the study and have a blood sample drawn at their doctor’s office or laboratory and shipped to Dr. Siminovitch with the materials provided. If it is not convenient for you to have your blood drawn, we can send you a saliva kit – the saliva sample can be done in your own home. Identification of WG susceptibility genes will provide a promising avenue to the development of improved diagnostic and prognostic tests, as well as new targets for therapeutic management.

All WG patients are eligible for the study, regardless of geographic location, age, and gender.

For more information email Jennifer or Stephanie at clinicalgenet.research@gmail.com. They are the research coodinators of the project. Or call at 416-946-4501 x3297.

The Godspeed Caregiver

Your role as caregiver ended more than two years ago. You find yourself compelled to make a difference in the lives of other caregivers. You share information readily with caregivers in the earlier stages, or you start a business dedicated to helping family caregivers, or you find a job in which you assist family caregivers. And, you treasure each relationship you have in your life, recognizing that each day, and your health, should never be taken for granted.

Your Purpose: To implement your lessons learned from your role as caregiver, from your care recipient and from your family members and friends. During this stage, which can last as long you wish–even your lifetime–you reap the benefits of your efforts.

Steps you can do in this final stage:

1. Follow your dreams. Make your goals your achievements.

2. Family caregivers will look to you as a mentor and leader. Allow caregivers in earlier stages the same freedom to stumble and steady themselves that you had. All worthwhile journeys have trips and wrong turns; the journeys become meaningful as we learn from our mis-steps.

Share your experiences with expectant caregivers, freshman caregivers, entrenched caregivers and pragmatic caregivers. They can learn from you! Many of the books, web sites, audio tapes and videos which helped you along your journey were developed by Godspeed Caregivers.

3. Treasure the memories you have of your care recipient. Continue to remember your care recipient regularly through rituals, such as enjoying an ice cream cone in her honor on her birthday, or by planting trees in her name. Reading and reviewing your diary will be a great way to remember.

Of course, your best memorial to your care recipient’s memory is a life you build for yourself filled with healthy relationships, productive careers and joy and laughter.

The Transitioning Caregiver

You’ve been a caregiver over a period of several years and have recently made a decision about your role as caregiver. Or, your care recipient’s condition has taken a turn for the worse and you know his time is very limited.

Your Purpose: To walk with your care recipient during his last months and weeks, implementing his or her decisions about end-of-life care that you both discussed during Stage 1. This stage is about loving and feeling good about the shared journey. As you both feel the journey end, this is also a time to mourn and grieve. As you mourn, you might find yourself questioning what will be the next chapter in your life. You’ve been a caregiver for so long, how can you possibly do anything else?

Some steps you can take during stage 5:

1. Allow yourself time to mourn and grief.

A nursing home placement may have been as painful a loss as a death. Both experiences are tremendous losses–and need to be respected with time to process, and then heal, the emotions. Or if the choice has been made for assistance at home, life will still require process.

2. Remember your care recipient.

You don’t have to give away clothes or remove pictures–until you want to. When family and friends seem hesitant to talk about your care recipient (they worry they will upset you), assure them that sharing memories, laughs and stories brings you great comfort.

3. Reflect back on your caregiving responsibilities and decisions with pride.

Find comfort in knowing that you did the best you could. You did your best, which is the very best you can hope to do.

4. Review your journal.

How are you different today than you were on the day you first started writing in your journal? How will you use this experience to enhance your future relationships?

The Pragmatic Caregiver

You’ve been caregiver for an extended period of time. You’ve been through it all: hospital admission and discharges; short-term rehab stays in nursing homes; a vast array of community services. You may appear to doubt the advice given by health care professionals; you’ve just been through the health care system long enough to know that sometimes health care professionals may not seem to have your best interest in mind.

Some family members and health care professionals worry about your ability to find humor in situations they find offensive. They view your attitude as “calloused” and “uncaring”. Far from it, you have a very practical, very realistic approach toward your caregiving role–and your sense of humor has been a critical tool for your survival. Without your sense of humor, you would have given up a long time ago.

Your Purpose:
To gain a better understanding of yourself and your care recipient. You’ve settled into your role and your routine; now is your opportunity to step back and reflect. The first three stages laid the groundwork for this stage, your period of personal growth.

Some steps you can take during stage 4:

1. Work on finding joy in your relationship with your care recipient.

The biggest joy-killers may be your hands-on duties: bathing, dressing, incontinence care. But these duties bring you together, this is your time together. Add some fun to your hands-on care: Sing songs, tell jokes, share goals and dreams.

2. Work on forgiving your care recipient for past hurts.

Resentment toward past wrong and injustices will make your present caregiving role very difficult. Let go of what was and concentrate on making what is healthy and productive.

3. Develop a habit of enjoying shared activities.

Develop a routine of time shared as husband-wife, mother-daughter, father-son rather than as just caregiver and care recipient. Releasing the roles of caregiver and care recipient allows you to enjoy each other.

4. Begin to think about your future.

What goals have you yet to achieve? How can you achieve them? Can your care recipient help you achieve them?

The Entrenched Caregiver

You’ve been involved in your care recipient’s care for a few years. Your involvement is almost daily–if not constant. Your care recipient may live with you–or your involvement means that your day is structured to be available to your care recipient. You begin to wonder, how much longer can you live this way? Your mood is sometimes upbeat–you’re proud you’ve been able to provide such wonderful care and make decisions that support your care recipient’s best wishes–and sometimes melancholy–why you? You’ve been mourning the loss of your care recipient’s abilities and functions and often long for the days before caregiving. And, you’re tired.

Your Purpose:
To develop a routine, create a familiar schedule for both yourself and your care recipient. A routine will help you deal with the overwhelming stresses and responsibilities that wear you out. A routine will provide comfort for you and your care recipient–this stage may be the most difficult for both of you. The changes you prepared for in Stage 1 and 2 are now a reality–you have become something of a lifeline to a family member or friend.

Some steps you can take during stage 3:

1. Determine your limits.

How long can your care recipient remain at home? What’s your comfort level in providing care in your home? For instance, some caregivers feel uncomfortable providing care when their care recipients become incontinent. Others determine they can provide care at home as long as Medicare or insurance benefits offset some of the home care expenses. Others feel that they can provide care as long as their other family members, like spouses and adult children, will put up with it.

But, everyone has limits. What are yours?

2. Continue regular breaks.

Consider annual weekly breaks–investigate short-term respite stays in your community’s nursing homes. Or, ask relatives to take over the caregiving role for a week or two every year or every two years. Continue to take daily, weekly and monthly breaks. Keep up with your own interests and hobbies as best you can.

3. Keep up with a support system–a caregiver’s support group or empathetic and understanding family members or friends.

And, if you find yourself struggling to stay sane, consider finding help through a counselor or therapist. In addition, check with your doctor about a screening for depression; if you are depressed, ask about treatment and medication options.

4. Continue to learn about your care recipient’s illness or condition.

Sometimes its good to go back and review/remind yourself what you and your loved one is faced with.

The Freshman Caregiver

This is your entry into the caregiving role. This is your time to experiment, to get your feet wet and see what works. This is your opportunity to learn how the health care industry works with, or in some cases, against, you. Now is the time to shape your caregiving personality: What duties are you comfortable with? What duties make you uncomfortable? How well are you and your care recipient getting along? What situations would create overwhelming stresses for both of you? What situations should you try to avoid because you know they will lead to nasty fights and bitter arguments?

Some steps you can take during stage 2:

1. Continue to learn as much as you can about your care recipient’s illness, disease or condition. Knowledge of a disease can help you feel comfortable and build trust with your loved one

2. Learn how to provide proper care from health care professionals or from health care videos, manuals or books. There are others out there that are going through similar scenarios that have published their experiences. It is so beneficial for caretakers and loved ones to know how to handle the unexpected, and be prepared for the  journey ahead.

3. Join a support group–online or in your community. We have hopefully made this step a little easier for you. Please check out the community and organization sections of this blog.

4. Count on regular breaks from caregiving. You cannot take care of someone without taking care of yourself. This means being a little selfish, and some caregivers are unfamiliar with this. Practice one or two things everyday that are for you and you alone.

5. Rely on help from community organizations. Because Wegener’s Granulomatosis is a disease that few know about, it is difficult to find a local organization. But there are support groups for cancer patients: this may be beneficial for those of you who have been on chemotherapy. There are also other resources out there for you. For food, health care, public agencies, legal, counseling or housing services in your state please call 2-1-1.(it is a national service help line)

Also check out our list we have created for you!

6. Keep in mind what your care recipient’s wishes are. Control is a real temptation for caregivers. Remember that your loved one is human, with real feelings and limitations. Be mindful of the ways you are treating them.

How Vasculitis is Diagnosed

The diagnosis of vasculitis is based on a person’s medical history, physical exam, signs and

symptoms, and laboratory tests.

Specialists Involved

A person with vasculitis may be referred to various specialists, including:

 A dermatologist (skin specialist)

 A hematologist (blood specialist)

 A pulmonologist (lung specialist)

 A cardiologist (heart specialist)

 A neurologist (nervous system specialist)

 An ophthalmologist (eye specialist)

 A urologist (urinary tract and urogenital system specialist)

 A nephrologist (kidney specialist)

 An infectious disease specialist

Diagnostic Tests and Procedures

A variety of tests are used to diagnose vasculitis. The type of test chosen will depend on the signs

and symptoms a person has. Some of the tests used in the diagnosis of vasculitis include:

Blood tests. These may be done to look for abnormal levels of blood cells or antibodies, which

could be a sign of inflammation in the body.

Biopsy. During this test, the doctor takes a small sample of tissue from a blood vessel or one of

the affected organs and looks at it under a microscope for inflammation or damage. A biopsy is

often the best way to make a firm diagnosis of vasculitis.

Urine analysis. This test might be done to look for abnormal levels of protein or blood cells in the

urine, which could be a sign of vasculitis affecting the kidneys.

EKG (electrocardiogram). This test measures the rate and regularity of the heartbeat, and is done

to see if vasculitis is affecting the heart.

Helpful Chemo House Products

The information on this page is a guide for you, it is many of the recommendations of others that have worked well in an immune compromised household. As always, you should check with your oncologist to see if additional measures are needed for your particular situation. Additional measures are usually necessary during and after medication, and they are not covered here. Published scientific references which are the sources of the recommendations made in this article are provided at the end of the article. Here are the items of preparation that we think are important:

It is essential that all dishes and eating utensils washed in hot water with soap after eating.  A dishwasher is preferred if possible.  Clean dishes and silverware also can lower the risk of infection during low blood counts.  Alternatively, paper plates, utensils, and napkins may be used. Make sure the dish soap specifically says antibacterial.

All clothes should be washed regularly with detergent, and preferably after every wearing, and with warm or hot water.  Commercial laundry facilities should not be used. We use detergents that are non-toxic and hypo-allergenic in addition to fabric softeners which are not harsh on the skin. Pure baking soda assists in killing germs, and the 12lb resealable bag is very economical for entire household.

Probably the most important thing to be done by both the patient and the family is hand washing.  We recommend adding Hibiclens, a surgical scrub available over-the-counter to each bathroom to be used instead of, or after regular soap and water.  Rinse using Hibiclens like regular soap and wash off.  Hands should be washed for 30 seconds.

Paper towels should be used in both kitchen and all bathrooms. The brand does not particularly matter, as long as good hygiene practices are used.

It is very important to keep all the floors and counter surfaces clean especially in the kitchen and the bathroom. A simple disinfectant such as Pine-Sol^® or Lysol^® or another household product that has a disinfection claim on the label should be used regularly. Wipes are great for wiping shoe soles when you or your guests arrive and for dogs’ feet as not to track in outside dirt.

Masks should be worn by the parent only if the parent is sick, or feels a cold coming on. Masks are not generally needed unless someone who has to be with the patients has a cold.  Hand washing by the person who has the cold is also essential as described above. There are various types of masks that can be used.

For additional cleanliness, we use Clean Shower^® after every shower. It helps reduce mildew build-up and makes cleaning easier.

An air filter is not normally necessary unless you are in a high mold or dust area, or there is another known airborne hazard; however, if you do decide to use an air filter, a HEPA filter is necessary. They are available at most hardware stores as well as at Costco. High Efficiency Particulate Arresting (HEPA) filters stop mold spores as well as many bacteria and viruses and of course larger items such as dust. This particular HEPA filter is Honeywell HEPA™ Air Filter. It is the #1 choice of physicians and is ideal for rooms up to 28.2 sq. m. (304 sq. ft.). There are many types of HEPA filters to suit your family’s individual needs. We use it because it reduces 100% of bacteria and germs as well as pet dander, pollen, dust and other airborne particles.

Various types of HEPA vacuums can be purchased depending upon your budget. We enjoy the bagless vacuums because it is so much easier to maintain a dust free and dander-free house with two cats and a dog. Areas that house pets should be vacuumed with a HEPA vacuum, and disinfected regularly with a household disinfectant.  Pet snakes, turtles, and lizards are regular carriers of salmonella bacteria, and should not be kept in the house, nor should they come into contact with the patient.

Recently we came across an amazing product by CleanWave® and wish we had it long ago. By using powerful UV-C light, the CleanWave® Sanitizing Wand quickly eliminates germs, dust mites, viruses and molds. According to the Environmental Protection Agency, air in homes is as much as 100 times more polluted than outdoor air. These pollutants can cause the immune system to overreact producing allergy symptoms, inflaming mucous membranes, causing upper respiratory distress, asthmatic outbreaks and chronic head-aches. Light disinfection has been used in hospitals, food processing facilities, water treatment and HVAC systems for over 30 years.The technology is proven and recognized by the FDA, EPA and USDA as valid and effective means of eliminating biological contaminants.

• Eliminates Germs, Viruses, Molds and Dust Mite eggs
• Chemical free alternative for household disinfection
• Operates up to 60 minutes on a single charge nylon carrying case and charger

Travel Verilux Wand

• Is convenient for use in public restrooms to effectively eliminate germs on fixture surfaces, on seating surfaces at airports.
• Is a great, healthy addition to dorm rooms and office environments.
• Sanitizes your environment without harmful chemicals, conveniently.
• Note, that the Verilux® Sanitizing Travel Wand incorporates a safety shut-off switch to protect eyes from exposure.

Verilux Sweeper

The sweeper uses powerful ultraviolet light to sanitize while cleaning low-pile carpeting and floors throughout your home.

• The Sanitizing Sweeper is lightweight and cord-free for quick and easy cleanups in your kitchen, bath or baby’s room.
• Light and powerful, the Sanitizing Sweeper stores easily in any closet and the dust bin empties into your wastebasket without exposing you to dirt.
• Comes with an AC adapter/Quick-charge battery charger to keep it portable but ready for use.
• The sweeper has powerful beater brushes which snatch up crumbs and dust.
• The Sanitizing Sweeper has a multi-length shaft to convert for use on stairs and upholstery.
• The UVC light eliminates dangerous germs – leaving your floors truly clean and disinfected.

Tired of Being Invisible?

National Invisible Chronic Illness Awareness Week is held annually in September and is a worldwide effort to bring together people who live with invisible chronic illness and those who love them.

A virtual conference in held at www.invisibleillnessweek.com and the blog is updated a few times a day during August and September.

Bloggers are welcome to participate anytime, but are encouraged to unite efforts during August and September to increase awareness online and share their experiences as well as encouragement. A badge is available that says you are blogging during the actual awareness week.

For additional information go to http://invisibleillnessweek.com/

Flu Vaccine Appears Effective in Patients With Wegener’s Granulomatosis

NEW YORK (Reuters Health) Jun 17 – A form of the influenza vaccine induces an adequate antibody response and does not appear to raise the risk of disease relapse in patients with quiescent Wegener’s granulomatosis, according to a new study.

The adequate antibody responses occurred despite the patients’ age (an average of 59 years) and their use of immunosuppressive drugs. The open, randomized trial by Dutch researchers was reported by Dr. Bert Holvast of the University Medical Center Groningen, The Netherlands, and colleagues in the June issue of Annals of the Rheumatic Diseases.

“Although questions regarding serological responses to repeated vaccinations may remain,” the researchers write, “annual vaccination can be considered clinically effective. Therefore, annual influenza vaccination may be recommended in Wegener’s granulomatosis patients with quiescent disease.”

Despite the facts that patients with Wegener’s granulomatosis typically take immunosuppressive drugs and have a relatively high median age, the effectiveness of the influenza vaccine in such patients has been questioned, because the disease itself or the immunosuppression could hamper the response to the vaccination.

The study participants had quiescent disease, defined as a Birmingham vasculitis activity score of less than 2. The 72 participants were randomized 2:1 to receive an influenza vaccination or to serve as unvaccinated controls. An additional 49 healthy controls were also vaccinated.

The trivalent subunit vaccine, containing A/New Caledonia/20/99 (H1N1), A/NewYork/55/2004 (H3N2) and B/Hong Kong/330/2001, was administered as a single intramuscular dose. Quantitative detection of influenza antibodies was performed by haemagglutination inhibition test.

One and 3-4 months after vaccination, rates of seroprotection — defined as a titer that can be considered protective in a healthy adult — were similar in subjects and controls for all vaccine strains.

Likewise, seroconversion rates were similar for patients and healthy controls, except for the A/H1N1 strain, for which the seroconversion rate was lower in the Wegener’s granulomatosis patients.

No differences in seroprotection or seroconversion rates were found between patients using immunosuppressive drugs versus those not using them. The authors note, however, that given the low number of patients using immunosuppressive drugs and the drugs’ heterogeneity, this finding should be approached with caution.

They also cautioned that “our findings are restricted to the use of a trivalent subunit vaccine for intramuscular use.”

Article From Reuters Health Information

Ann Rheum Dis 2009;68:873-878.