When you’re the caregiver: Setting Boundaries

A major frustration for caregivers is trying to do what is in the best interest of your charge only to have them challenge and/or resist you every step of the way. Nothing is more frustrating than hearing,  “It’s my life and I can do what I want.”

Yes, they do get to make that choice, but the caregiver also has the right and responsibility to determine how much and how long they can serve in that capacity.  

The demands of being a caregiver are enormous and can easily lead to burnout and high anxiety. I worked with a caregivers group, where almost all of them either died or became seriously ill before the “patient” succumbed to their illness.

Entry into caregiving comes in different ways. The person has an emergent situation, such as a heart attack or accident. At the beginning it’s addressing the immediate needs but over time, the situation changes from acute to chronic care. Other situations evolve over time, such as caring for an elderly parent or someone whose chronic condition progresses.

Regardless of how you enter into the caregiving partnership, the sooner you put boundaries in place, both with your charge, family and significant others, the more likely you can reduce stress and burnout.  

Consider the following:

• Understand that the only thing you can control is your relationship to your own thoughts, feelings, and behavior. We can’t control others, including close family members and the person you are caring for. Investing in things we have no direct control over leads to misery.

• Identify the reasons you are a caregiver: Are you doing this because you want to or because you think you should? Are you afraid that not doing all that is being asked will cause people to be angry with you or reject you? Do you identify as a caregiver and are more willing to take care of others and not yourself?

• As much as possible, know exactly what you are dealing with. What is their diagnosis? What stage of progression are they in? What kind of care do they need now? What symptoms indicate a changing disease status? What kind of care will they need as the disease progresses? Talk to other caregivers who are caring for someone with a similar diagnosis. Talk to the treating physician. If the person does not want you to talk to their care provider, why? The answer to this question may help you better understand whether you should be in the caregiving role with this individual.  

• Know your limits and capabilities. Be realistic about what you can do and when.

•  Inform family, the person being cared for, as well as medical providers about what you can and cannot provide. If you are caring for a spouse, parent or adult child you may think you have to do it all. Not only is that unrealistic, it’s unhealthy for you and the person. Further, in today’s medical climate, where more and more responsibility is being deferred to the patient and those caring for them, be very clear about what you will and will not do. For example, many home health nurses think the family can handle certain types of treatment, wound care etc. If this is going to be a problem for you, let them know it right up front so other arrangements can be made.

• Put it in writing: Spell it out, via e-mail or writing, about what you are willing to do and limitations you might have.

• Just because they ask doesn’t mean you have to do it. Learn to say no.

• You are not responsible for making everyone happy and comfortable all the time.

• Recognize the need for physical and emotional boundaries: It’s easier to determine physical boundaries, such as having the person live with you or vice versa. This can also extend to how much personal care you feel comfortable giving, which can be impacted by your relationship to the individual, culture, gender etc. Emotional boundaries are more complex and require that you are aware of your own wants and needs and can separate these from the wants and needs of others.

• Take time to respond to requests: For example, Family and friends will often want frequent updates about how the person is doing. Make it easy on yourself by providing a group update once a day, week, month or whatever time period make sense for you.

• Identify the help you need and seek it: If people ask how they can help, don’t just brush it aside. Give them ways they can help. Join a caregivers group and by all means, contact local organizations that can help you. Use the How to Get What You Need; Check List for Those Living with a Chronic Condition & Those that care for them.

• Know when it is time to change your caregiving role: The longer you are a caregiver, the more likely it will be that you reach a point where you just say, “I can’t do it anymore.”  Does that mean you’ll just walk away? Could it be modified if others pitched in and helped? Do you just need a vacation or more time off during the week?

The following are signs you need to make a change: avoiding the person, anger, anxiety, fatigue, depression, impaired sleep, poor health, irritability or believing there is “no light at the end of the tunnel.”

This is the time to sit down with your charge and/or family and be clear. This is not about making people feel guilty but it’s about your ability to set clear boundaries and work with others to problem solve.

Using the three prong approach can help:

• Outline what you are no longer able to do and why

• Recognize it will have consequences for the person being cared for

• Provide a suggested solution

Some examples include:

“ Due to my work schedule, I will no longer be able to clean your house and shop for you during the week. I know you don’t like other people in the house, but other members of the family will be taking my place.”

“ Winter is coming and the combination of high heating bills and difficulties of getting to you during snow storms means we need to make a change. While it’s not easy to leave your home, we need for all of us to be safe. There are several options we can consider but remaining here is not one of them.”

Caregiving is a dynamic relationship that evolves over time. As caregiving tasks increase, so will stress on the caregiver. A caregiver and his or her loved one will manage this challenge successfully if each person is able to express directly what he or she needs, wants or can do. A relationship that allows for and respects boundaries and individual limitations can expand to include other caregivers without the risk of lessening the importance of the primary relationship that sustains the elder in the aging process. When and How to Say “no” to Caregiving.

Take a Break: Use Paper Napkins for Creative Inspiration

Whether it’s walking through a store or being at a party, napkin designs can be inspiring. Below are a variety of ways you can incorporate paper napkins into various projects.

A number of these will require that you remove the other “plies” (the white sheets) so that you have just the sheet with the design on it. There are two quick ways to do this: run a hot iron over it and the top layer with the design will easily peel off. The other trick is to put a piece of Scotch tape in one corner and pull.  It’s important that these layers are removed otherwise the ply that’s glued down will stick and the design side will fall off.

Make cards, name cards etc.: Use spray glue, glue stick or even a piece of “peel and stick” the same size as the card. If you use a glue stick, be sure it’s completely smooth-no globs of glue. To ensure that it sticks, lay the card onto the paper napkin and rub the card and not the napkin side.

Another option is to cover the paper with contact paper. It’s now stiff enough that it can be used in the same way you’d use regular paper or fabric.

Decoupage it: It can be flower pots, furniture, picnic basket, a final layer on a pinata, a picture frame, sneakers or whatever strikes your fancy, paper napkins are great for decoupage. While Mod Podge is generally recommended, you can make your own by mixing equal parts white glue and water.

Place the glue on the surface of the item you will be covering, then place the napkin down on top of it. Use a piece of plastic wrap on top to smooth the napkin down without tearing. Start in the middle and work out to the ends for smoothest results.

You can spray several coats of hair spray on the napkin, let dry, and then decoupage as usual. 

Make a candy bowl 

Not interested in today’s activity, go to the Take a Break Pinterest and pick something else.

Life with Chronic Conditions: Be Prepared Not Scared

What would you do if you have to suddenly evacuate your home because of a natural disaster? How about if you are stranded for several days because of a power outage, snow storm, hurricane or tornado?

September is “National Preparedness Month.” Today’s post is about being prepared, not scared.

It’s common for people to wait until just the day before a hurricane, blizzard or other event is about to happen and make a mad dash to the store only to be greeted by bare shelves. Many events happen without any warning, such as earthquakes and fires. Consequently,  the better prepared you are now, the better you’ll deal with an emergency.

In addition to having sufficient medical supplies (7-10 day supply of prescription medications), water and food to last 72 hours, as well as protect important documents and medical records, there are specific things you might need depending on your condition.  

Register with local agencies if you will need help evacuating or need to be checked on at home. If your state doesn’t have a registry, contact your local fire department and/or police department as they will be heading up rescue operations if they are needed. They can also advise you about special programs to register for.

Know your state’s emergency management program/protocols. Every state has an emergency management division usually within their Department of Public Safety. You can find your state’s program by googling the name of your state with “emergency management.” Read through the website as it can help you prepare for emergencies specific to your area.

Know the alerts for your area: Depending on your community, there can be specific sirens and alerts depending on the type of emergency.  Know the best places (radio stations and websites) to monitor the emergency situation.

Wear a medical alert bracelet or other ID

Know your exact diagnosis

Carry your insurance card along with medical provider information (Name, phone number, e-mail address, hospital they are affiliated with). Also have written down the medications you are on, dosages, and other relevant information.

Depending on medication, keep some in multiple places: This includes oxygen

Consider registering with a life alert program as you can contact them even if there is a power outage and phone lines are down.

Create a plan with family and friends: Use the Ready Guide  to help you.

Make a plan with your medical provider: Depending on where you live, as well as your chronic condition, it’s important that you know where to go to get immediate medical help you may need in the event of an emergency. This is particularly true for those on dialysis and certain respiratory diseases.

Emergency Preparedness by Condition

• Cancer 

• Diabetes 

• Epilepsy

National Preparedness Month

Take a Break: Paint on fall leaves

Step 1: Collect leaves-fall as well as green will work. Best to pick them off the dry before they have fallen and started to curl

Step 2: Press leaves in a heavy book to make sure they are flat and dry. Best to leave in over night

Step 3: Use paint, gel pens or markers to color. The leaves can be spray painted, or a base coat applied, before decorating.

Not interested in today’s activity, go to the Take a Break Pinterest and pick out something else.

Journal Watch September 2019

PAIN

Virtual Reality for Management for Pain: VR significantly reduces pain versus an active control condition in hospitalized patients. VR is most effective for severe pain. Future trials should evaluate standardized order sets that interpose VR as an early non-drug option for analgesia. PLOS One

Lower back pain? Self-administered acupressure could help: A recent study found that people with chronic lower back pain who performed self-administered acupressure experienced improvement in pain and fatigue symptoms. "Acupressure is similar to acupuncture, but instead of needles, pressure is applied with a finger, thumb or device to specific points on the body." Pain Medicine

Use of PainReliever Tramadol May Up Risk for Hypoglycemia: Use of the widely prescribed opioid tramadol is associated with a greater risk for developing hypoglycemia compared with almost every other opioid, according to a study published online Aug. 28 in Scientific Reports.

 

Losing 20 lb Improves Knee Replacement Outcomes: Losing at least 20 lb before total knee arthroplasty is associated with better outcomes among morbidly obese patients, according to a study published online Aug. 21 in The Journal of Bone & Joint Surgery.

 

Risk Factors ID'd for Worse Quality of Life From Knee Osteoarthritis: It may be possible to identify persons at risk for suffering a worsening in health-related quality of life (HRQoL) due to knee osteoarthritis (OA), according to a study published online July 19 in PLOS ONE. Female gender, overweight, smoking, knee pain, lower income tied to rapidly worsening quality of life.

Facial Involvement in Primary Headaches Occurs Infrequently: Facial involvement in primary headaches occurs infrequently, according to a study published online Aug. 21 in Neurology. Facial pain reported as independent or additional symptom in 291 patients of 2,912 patient data sets.

Ultrasonography Helps Differentiate Arthritis Types: Ultrasound is effective for differentiating between the major types of arthritis when combined with a physical exam and patient history, according to a review recently published in The Open Medical Imaging Journal.

 

COMPLEMENTARY & ALTERNATIVE MEDICINE

Benefits of cognitive behavioural therapy for IBS continue 2 years after treatment: Irritable Bowel Syndrome (IBS) is a common gastrointestinal disorder affecting 10 - 20 per cent of people. Previous research (the ACTIB trial) showed that that Cognitive Behavioural Therapy (CBT) tailored specifically for IBS and delivered over the telephone or through an interactive website is more effective in relieving the symptoms of IBS than current standard care one year after treatment. This 24 month follow up research published in Lancet Gastroenterology and Hepatology has shown that benefits continue two years after treatment despite patients having no further therapy after the initial CBT course.

Study shows BioCell collagen can visibly reduce common signs of skin aging within 12 weeks: In one of the most substantial studies of a skin health supplement, BioCell Collagen®, was found to visibly reduce common signs of skin aging, including lines and wrinkles, within 12 weeks of daily use. The findings reported in this randomized, double-blind, placebo-controlled clinical trial included a measurable improvement in signs of aging in women, represented by increased skin elasticity, reduction of crow's feet, and improvement in depth and number of fine lines and wrinkles. The full findings of the peer-reviewed study are presented in June 2019 during the annual meeting of the American Society for Nutrition. No adverse reactions were reported during the study. Participants surveyed at the sixand twelve-week marks reported a positive perception of the supplement effectiveness. published in the September/October issue of Alternative Therapies in Health and Medicine and posted on PubMed.

Women Who Smoke Marijuana May Have Less Success with Fertility Treatment: Among women undergoing fertility treatment, those who reported smoking marijuana at the time were more than twice as likely to lose a pregnancy than those who never smoked or did not currently smoke. Aug. 14 Human Reproduction

Review: Biofeedback could help treat a number of conditions: A literature review by Veterans Affairs researchers highlights the usefulness of biofeedback for headache and incontinence treatment, and stroke recovery. There was less evidence for its role in other conditions.

Temps up blood pressures down in hot yoga study: Adults taking hot yoga had lower blood pressure measurements after three months of classes, in a small study examining hot yoga's impact on blood pressure. Hot yoga is typically a vigorous workout practiced under hot and humid conditions. Study researchers say this is one of the first studies of hot yoga's benefits in lowering blood pressure and more research is needed to determine if the practice has true blood pressure lowering power. American Heart Association's Hypertension 2019 Scientific Sessions

FDA ACTION

• Alerted that some ranitidine medicines, including some products commonly known as the brand-name drug Zantac, contain a nitrosamine impurity called N-nitrosodimethylamine (NDMA) at low levels. NDMA is classified as a probable human carcinogen (a substance that could cause cancer) based on results from laboratory tests. NDMA is a known environmental contaminant and found in water and foods, including meats, dairy products, and vegetables.

• Issued a warning letter to JUUL Labs Inc. for marketing unauthorized modified risk tobacco products by engaging in labeling, advertising, and/or other activities directed to consumers, including a presentation given to youth at a school.

• Approves first treatment for patients with rare type of lung disease-Ofev capsules for adults with interstitial lung disease associated with systemic sclerosis or scleroderma

• Approves new add on drug-Nourianz-to treat patients with Parkinson’s Disease experiencing “off” episodes

• Approved Xenleta to treat adults with community-acquired bacterial pneumonia.

PREVENTION

Do Not Use Electronic Cigarettes: Americans should not use electronic cigarettes while health officials investigate cases of severe lung illness that may be linked to the devices, according to a statement issued by Patrice A. Harris, M.D., president of the American Medical Association.

Dog ownership associated with better cardiovascular health: Owning a pet may help maintain a healthy heart, especially if that pet is a dog, according to the first analysis of data from the Kardiozive Brno 2030 study. The study demonstrates an association between dog ownership and heart health, which is in line with the American Heart Association's scientific statement on the benefits of owning a dog in terms of physical activity, engagement and reduction of cardiovascular disease risk.

E-cigs can trigger same lung changes seen in smokers, emphysema: Scientists found that the lungs of vapers -- like the lungs of smokers -- have elevated levels of protease enzymes, a condition known to cause emphysema in smokers. The researchers also found that the nicotine in vaping liquids is responsible for the increase in protease enzymes. Journal of Respiratory and Critical Care Medicine

Sleeping too much -- or too little -- boosts heart attack risk: Even if you are a non-smoker who exercises and has no genetic predisposition to cardiovascular disease, skimping on sleep - or getting too much of it - can boost your risk of heart attack, according to a new University of Colorado Boulder study of nearly a half-million people. The research, published Sept. 2 in the Journal of the American College of Cardiology, also found that for those at high genetic risk for heart attack, sleeping between 6 and 9 hours nightly can offset that risk.

It takes a community to lower cardiovascular risk: Concerted effort by friends, family and non-physician health workers can make a dramatic difference in reducing the risk factors for heart problems in patients with hypertension, an international study by Hamilton researchers has found. The Lancet

Cardiovascular disease patients benefit more from exercise than healthy people: A study of nearly half a million people has found for the first time that those with heart or blood vessel problems benefit more from having a physically active lifestyle than do healthy people without cardiovascular disease (CVD). European Heart Journal

Aspirin should not be recommended for healthy people over 70: Low-dose aspirin does not prolong disability-free survival of healthy people over 70, even in those at the highest risk of cardiovascular disease. The late breaking results of the ASPREE trial are presented today at ESC Congress 2019 together with the World Congress of Cardiology.(1)

Pollution and noise reduction advised in ESC guidelines on chronic coronary syndromes: "Air pollution and environmental noise increase the risk of heart attack and stroke, so policies and regulations are needed to minimise both. Patients with chronic coronary syndromes should avoid areas with heavy traffic congestion and may consider wearing a respirator face mask. Air purifiers with high efficiency particulate air filters can be used to reduce indoor pollution." European Heart Journal

Poor oral health linked to cognitive decline, perceived stress: Oral health is an essential part of psychological well-being and overall health in older adults. Poor oral health is associated with decreased quality of life, depression, hypertension, and cognitive decline. Two Rutgers studies published in the Journal of the American Geriatrics Society, explored the relationship between poor oral health and cognitive decline and the effects of perceived stress and social support on dry mouth among older Chinese Americans.

Concussions linked to erectile dysfunction in NFL players: Head trauma suffered by former NFL players was linked to erectile dysfunction, according to a new study published in JAMA Neurology.

 

Occasional Napping Linked to Lower Risk for Cardiovascular Events: Napping once or twice per week is associated with a lower risk for incident cardiovascular disease (CVD) events, according to a study published online Sept. 9 in Heart.

Women With Heart Attack Do Present With Typical Symptoms: Typical symptoms of myocardial infarction are more common and have greater predictive value in women than in men, according to a study published in the Sept. 3 issue of the Journal of the American Heart Association.

Intrauterine Device Use May Reduce Incidence of Ovarian Cancer: Intrauterine device (IUD) use among reproductive women is associated with a decreased incidence of ovarian cancer, according to a review published online Sept. 10 in Obstetrics & Gynecology. 

Mammos May Not Benefit Elderly Women With Chronic Illness: For older women, the cumulative incidence of death from other causes is many times higher than breast cancer incidence and death, according to a study published online Sept. 6 in the Journal of the National Cancer Institute.

NUTRITION/SUPPLEMENTS

Prescription omega-3 fatty acid medications effectively lower high triglycerides: Four grams per day of prescription omega-3 fatty acid medication effectively lower high triglyceride levels, but identification of secondary causes of high triglycerides, such as hypothyroidism and poorly managed type 2 diabetes as well as lifestyle changes should be addressed before prescribing drugs. American Heart Association

Peanuts may help protect against age-related cognitive decline: “People who eat peanuts regularly have a lower risk of heart disease; and there is growing evidence that the risk of developing Alzheimer’s disease is associated with risk of cardiovascular disease,” Sacks told the Times Free Press in an August 20, 2019 article. “We surmise that peanuts could be an important component of a diet that prevents cognitive decline with aging. That is one reason why we included peanuts in the MIND study.”

Are fake meat products better for human and planetary health?: Recently, plant-based products such as hamburger patties that mimic the taste and texture of meat have gained popularity as an alternative. In a JAMA Viewpoint published August 26, 2019, Harvard T.H. Chan School of Public Health’s Frank Hu, chair of the Department of Nutrition, and co-authors including Gina McCarthy, director of C-CHANGE, looked at whether plant-based meat alternatives can be part of a healthy and sustainable diet. They conclude that the answer remains far from clear given the lack of rigorously designed, independently funded studies. Among the health-related concerns they raise are the high sodium and caloric content in several popular imitation burger patties, and that these products are highly processed, which can lead to loss of nutrients.

Few people with peanut allergy tolerate peanut after stopping oral immunotherapy: Studies have shown that peanut oral immunotherapy (OIT) -- ingesting small, controlled amounts of peanut protein -- can desensitize adults and children and prevent allergic reactions, but the optimal duration and dose is unknown. In a study that followed participants after successful OIT, discontinuing OIT or continuing OIT at a reduced dose led to a decline in its protective effects. The study also found that blood tests administered before OIT could predict the success of therapy. The Lancet

Drinking tea improves brain health, study suggests: A recent study led by researchers from the National University of Singapore (NUS) revealed that regular tea drinkers have better organised brain regions -- and this is associated with healthy cognitive function -- compared to non-tea drinkers. The research team made this discovery after examining neuroimaging data of 36 older adults. Aging

 

Vitamin D: How much is too much of a good thing?: A three-year study has shown that there is no benefit in taking high doses of vitamin D (4000IU and 10,000 IU). More research is required to determine if high doses may actually compromise bone health. For normal, healthy adults, Health Canada recommends a total daily intake of 600 international units (IU) up to age 70, and 800 IU after age 70. Other sources, like Osteoporosis Canada, suggest adults at risk of osteoporosis, a condition characterized by bone loss, should take 400 -- 2,000 IU of Vitamin D. Those taking high doses were more likely to develop hypercalciuria (elevated levels of calcium in the urine), which is associated with increased risk of kidney stones. JAMA

Study Reveals Mixed Effects on Health for Vegetarian Diet: Vegetarians and fish eaters have a lower risk for ischemic heart disease compared with meat eaters, but vegetarians have a higher risk for stroke, according to a study published online Sept. 4 in The BMJ.

 

Drinking More Coffee Tied to Lower Risk for Gallstone Disease: Individuals with genetic variants linked to increased coffee consumption have reduced risk for gallstones. Journal of Internal Medicine

Drinking Soft Drinks Tied to Higher Risk for Early Death: Greater consumption of soft drinks, both sugar-sweetened and artificially sweetened, is associated with a higher risk for all-cause mortality, according to a European study published online Sept. 3 in JAMA Internal Medicine.

Low-Fat Dietary Pattern Offers Long-Term Health Benefits: A low-fat dietary pattern provides lasting health benefits, according to a study published in the September issue of The Journal of Nutrition. Significant benefits seen in relation to breast cancer, CHD, diabetes, without adverse effects.

TREATMENT

Study shows metabolic surgery associated with lower risk of death and heart complications: A large Cleveland Clinic study shows that weight-loss surgery performed in patients with type 2 diabetes and obesity is associated with a lower risk of death and major adverse cardiovascular events than usual medical care. These patients also lost more weight, had better diabetes control, and used fewer medications for treatment of their diabetes and cardiovascular disease than those undergoing usual medical care. JAMA

 

For patients with diabetes, ticagrelor reduced heart attacks, strokes: Taking ticagrelor in addition to aspirin reduced the risk of a composite of cardiovascular death, heart attack, or stroke. Patients on this dual-antiplatelet therapy also experienced greater risk of major bleeding. In THEMIS-PCI, a study that specifically looked at THEMIS patients with a history of previous percutaneous coronary intervention (PCI) that includes stenting, versus the overall THEMIS population, investigators found even more favorable results for patients taking ticagrelor plus aspirin. Results of THEMIS are published simultaneously in The New England Journal of Medicine and results from THEMIS-PCI are published simultaneously in The Lancet.

Position Statement Clarifies Benefits of Testosterone Therapy for Women: Testosterone can be used for postmenopausal women with hypoactive sexual desire dysfunction (HSDD) but is not recommended for other symptoms or medical conditions, according to a position statement published online Sept. 2 in the Journal of Clinical Endocrinology & Metabolism. 

Type and Timing of Menopausal HRT Affect Risk for Breast Cancer: Use of menopausal hormone therapy (MHT) is associated with an increased incidence of breast cancer, according to a study published online Aug. 29 in The Lancet.

OTHER

Evidence Lacking for Cognitive Screening in Older Adults: The U.S. Preventive Services Task Force (USPSTF) concludes that the evidence is currently inadequate for weighing the benefits and harms of screening for cognitive impairment among older adults. These findings form the basis of a draft recommendation statement published online Sept. 10 by the USPSTF.

Poverty Rate Drops, but Fewer Americans Have Health Insurance: The percentage of Americans living in poverty declined in 2018, but the rate of those without health insurance increased, according to a U.S. Census Bureau report. Meanwhile, about 27.5 million people (8.5 percent of the population) lacked health insurance for all of 2018, up from 7.9 percent in 2017, which was the first increase since the Affordable Care Act took full effect in 2014. 

Adolescent Oral Contraceptive Use Tied to Later Depression Risk: There is a long-term association between adolescent oral contraceptive (OC) use and depression risk in adulthood, according to a study published online Aug. 28 in the Journal of Child Psychology and Psychiatry.