Balancing the Needs of Patient and Caregiver

Years ago, a friend who was dying said, “There are two patients-me and Dick,” the latter being her husband and caregiver. She could not have put it more aptly.

Caregivers are hidden patients themselves, with serious adverse physical and mental health consequences from their physically and emotionally demanding work as caregivers and reduced attention to their own health and health care. Supporting Family Caregivers in Providing Care 

A newly released study  points out that the elderly are more frequently cared for by their spouses (other elderly) versus their children. While much is made of the “sandwich generation,” those who care for parents as well as children, this turns out to occur far less than previously thought.

While there are various studies that identify the incredible health risks to caregivers, it’s a bit like the cartoon of the elephant in the living room who answers the phone by saying, “No, it’s the elephant.” We know it’s a problem, but the conversation of how to balance the needs of patient and caregiver doesn’t happen as much as it should. 

So this post is an effort to begin a much needed conversation

What patients and caregivers have in common: While they may be coming from different places, patients and caregivers share many similar feelings including:

• Isolation

• Burdened

• Overwhelmed

• Lack of control

• Afraid and fearful

• Guilt

• Fatigued and disturbed sleep

• Lowered immune function

• Depressed

• Worried about finances, their inability to meet expectations and responsibilities, of work, families and/or friends.

Unique to patients:  Dealing with what can seem like never ending ailments, such as pain, lack of mobility, fatigue, “brain fog,” pill burden, anxiety, depression and more can easily explain why patients try to exert as much control in their life as possible. Often times they can be so absorbed in what they are dealing with that they have no perception of how it’s affecting their caregiver, let alone what are realistic expectations of other people.

What is unique to caregivers: Putting their life and needs on hold to meet someone else’s needs can feel fulfilling at times, as well as very frustrating. Limited access to patient information, lack of education and training about the person’s condition and how they can provide the best care as well as having to deal with other family and friends who question what’s going on can make a difficult situation feel impossible. Continually viewing their charges’ needs and feelings before their own is a set up for disaster.  

Striking the Balance

• Caregivers need education about the patient’s condition, their needs and how they can best meet them.

• Patients need to understand the importance of their caregiver being involved in visits to medical and social service providers, being educated about their condition, as well as have the ability to speak with them at other times.

• Caregivers need to be clear about what they can and can not do. Medical and social service providers, as well as family, friends and the patient, need to accept this and not try to make them responsible for things they clearly are not capable or willing to do.

• Patients need to be clear about their needs and not expect caregivers to surmise what they are.

• Patients and caregivers need to respect boundaries of one another.

• Tools that help to coordinate the needs of the caregiver and patient-such as a Lotsa Helping Hands page  should be utilized as they benefit both patient and caregiver.

• Advocacy is needed by both patient and caregiver.

Take a Break: Create Sacred Space

According to Joseph Campbell,  Sacred space (a space for uninterrupted reflection and unrushed creative work) is an absolute necessity for anybody today. You must have a room, or a certain hour or so a day, where you don’t know what was in the newspapers that morning, you don’t know who your friends are, you don’t know what you owe anybody, you don’t know what anybody owes to you. This is a place where you can simply experience and bring forth what you are and what you might be. This is the place of creative incubation. At first you may find that nothing happens there. But if you have a sacred place and use it, something eventually will happen.

Qigong is my sacred space as it helps me focus, calm down, problem solve and much more. I have some of my best ideas and insights while so engaged.

Unless I’m doing Qigong outside, and nothing makes me happier than being able to do this by the ocean, I find it important to clean the space. If it’s in the bedroom, where I have a niche, the bed needs to be made and the floor clean as I don’t like being distracted by dirt or other items that don’t belong there.

Sacred space can be a time of day, a place and/or a practice, (e.g. yoga, meditation, Qigong). There are no requirements here. As Campbell put it, “Your sacred space is where you can find yourself again and again.”

Maybe you already have a sacred space that you’ve never identified as such. Could be a cafe where you like to just sit, the perfect bench at the park, a walking path, Tuesday night yoga or even tea in your favorite mug first thing in the morning.

There are lots of recommendations on line about creating a sacred space in your home with icons, prayer pillows, altars and so forth. One site to check out is How to Create a Sacred Space in Your Home .

If you have a place that means a great deal to you, e.g. ocean, bring something from there (rocks) and put in your home so that it can serve as a reminder to recharge and your connectedness to it.

There is no right or wrong way to do this. Let how you feel be your guide.

Journal Watch June 2015

CHRONIC PAIN

Spinal Cord Stimulation System that Treats Pain Without Tingling Sensation Approved: The FDA approved the Senza spinal cord stimulation (SCS) system (Senza System) as an aid in the management of chronic intractable pain of the trunk and/or limbs, including pain associated with failed back surgery syndrome, low back pain and leg pain. The Senza System can reduce pain without producing a tingling sensation called paresthesia by providing high frequency stimulation (at 10 KHz) and low stimulation amplitudes.  

Shingles Vaccine Appears to Cut Odds of Long Term Pain: Even when shingles vaccination does not prevent the disease, it reduces the risk of long-term pain that can occur as a complication of the condition, according to a new study. Journal of Infectious Diseases. 

Talking Therapy Shows Promise for People WithChronic Low Back Pain: A new treatment, contextual cognitive behavioural therapy (CCBT), is particularly promising, as it focuses on accepting pain that cannot be cured, and learning to live life to the full amid the pain. BMC Musculoskeletal Disorders 

COMPLEMENTARY AND ALTERNATIVE MEDICINE

Keep calm and Carry On: Reacting positively to stressful situations may play a key role in long-term health, according to researchers. Adults who fail to maintain positive moods such as cheerfulness or calm when faced with the minor stressors of everyday life appear to have elevated levels of inflammation. Furthermore, women can be at heightened risk, the researchers say. Health Psychology 

FDA ACTION

• Approves additional antibacterial treatment for plague

• Spinal cord stimulation system that treats pain without tingling sensation approved

• Safety communication for LifeCare PCA3 and PCA5 Infusion Pump Systems by Hospira

• Cautions about dose confusion, medication errors for Ceftolozane, Tazobactam

• Reported that it’s not always possible to tell if dark chocolate contains milk by reading the ingredients list. Of 94 dark chocolate bars tested, only six listed milk as an ingredient but 51 of them actually contained milk.

• Approved brain stimulation device for Parkinson’s Disease

• Banned harmful trans fats

• Recommended Approval of two New Cholesterol Drugs: evolocumab (Repatha) for use in patients who at very high risk for high cholesterol and alirocumab (Praluent), both of which are PCSK9 inhibitors.

PREVENTION

• At Home Walks Help Those with Clogged Leg Arteries: Support groups that encourage walking exercises at home can improve the mobility of people with clogged leg arteries-called peripheral artery disease- a new study finds. Journal of the American Heart Association 

• Cholesterol Drugs May Lower Stroke Risk for Healthy Older Adults: A study found that when people took statins or fibrates, their risk of stroke over almost a decade went down by about one-third. BMJ 

• 1 Dose of HPV Vaccine May be Sufficient: One dose of the human papillomavirus (HPV) vaccine Cervarix could prevent as many cases of cervical cancer as the current two- and three-dose schedules, a new study contends. The Lancet Oncology 

• Diet and Exercise May Not Stave off  Muscle Loss: A meta analysis of 17 studies that looked at whether diet and exercise programs in men and women older than 65 could prevent the loss of muscle mass that current evidence is incomplete and inconsistent. Further research to determine the benefits of supplementation and exercise training for older people is therefore needed.” Clinical Interventions in Aging

• Most Physical Activity Helps You Sleep Better but not housework and child care: Researchers looked at data from a survey of more than 429,000 American adults. They found that activities such as walking, bicycling, running, weight lifting, aerobics/calisthenics, gardening, yoga/Pilates and golfing were all linked to better odds of a good night's slumber. But, people who got physical activity from household chores and child care had a greater risk of poor sleep, according to the study. Associated Professional Sleep Societies 

• Poor Sleep Associated with Increased Risk of Heart Attack, Stroke: Poor sleep is associated with increased risk of heart attack and stroke, according to results from a recent study. The study included a representative sample of 657 men aged 25 to 64 years with no history of heart attack, stroke or diabetes. In terms of sleep quality, very bad, bad or poor ratings were considered a sleeping disorder in the study. European Society of Cardiology 

• Aerobic Exercise Can Help Curb Asthma: Researchers led by Celso Carvalho of the University of Sao Paolo School of Medicine looked at outcomes for 43 people, aged 20 to 59, with moderate to severe asthma. They were randomly selected to do 30-minute yoga breathing exercises twice a week, or the breathing exercises plus a 35-minute indoor treadmill session twice a week. After three months, those in the treadmill group showed greater reductions in asthma severity and more improvement in their quality of life. Thorax

• Exercise, Games, Puzzles Don’t Prevent Signs of Alzheimer’s in the Brain: Physical and mental activity don't appear to prevent the brain from developing the telltale beta-amyloid deposits that are a hallmark of Alzheimer's disease, a new study suggests. Neurology 

• Treating Gum Disease Might Help Prostate Symptoms: Treating gum disease may help reduce symptoms of prostate inflammation, which can make urination difficult, a small study suggests. Denistry

• Weight Training’s Benefits May Depend on Genetics: Strength-building workouts seem to be most effective for those with a low genetic risk for a high body-mass index (BMI), the study found. BMI is a rough estimate of a person's body fat -- the higher the number, the more fat a person has. "This doesn't mean that resistance training is futile for women with higher genetic risk for obesity. It means those with lower genetic risk just benefited more. International Journal of Obesity

SUPPLEMENTS/VITAMINS/NUTRITION

• Coffee May Help Keep Impotence at Bay: The study, from the University of Texas Health Science Center at Houston, found that men who consume more caffeine each day had a lower risk of erectile dysfunction. The exception? Men with diabetes -- for them, extra caffeine didn't lower their odds for impotence. Plos One 

• Older Americans Need Protein to Keep Muscles Strong: Older adults need a protein-rich diet to maintain muscle mass and strength, a new study suggests. Protein should come from animal and plant sources, since each type of protein appears to play different roles in maintaining lean muscle mass and leg strength. Plant protein helps preserve muscle strength, while animal protein is linked to muscle mass, the researchers said. Journal of Nutrition 

• Nut Consumption Associated with Reduced Risk of Some Types of Cancer: A new systematic review and meta-analysis shows that nut consumption is, indeed, associated with a decreased risk of certain types of cancer (colorectal, endometrial and pancreatic), but not type 2 diabetes. Nutrition Reviews 

• Fish Oil Tied to Better Brain Function in Older Adults: A study of 40 mentally healthy adults, aged 65 to 75, who had the gene variant APOE e4, which put them at risk for late-onset Alzheimer's, found that those who consumed higher amounts of two omega-3 fatty acids found in fish -- DHA and EPA -- did better on tests that assessed their ability to switch between mental tasks. They also had a larger anterior cingulate cortex, a part of the brain involved in mental flexibility.  The findings suggest -- but do not prove -- that consuming DHA and EPA omega-3 fatty acids might improve mental flexibility by boosting the size of the anterior cingulate cortex. Frontiers in Aging Neuroscience 

• Soy Supplements Don’t Improve Asthma: Despite previous findings suggesting a link between soy intake and decreased asthma severity, a new placebo-controlled study shows soy supplements do not improve lung function for patients with asthma. The paper highlights the importance of focusing on overall health -- not just one food -- to manage disease and the importance of performing well-designed studies. JAMA 

• Drinking Chamomile Decreases Risk of Death in Older Mexican American Women: Drinking chamomile tea was associated with a decreased risk of death from all causes in Mexican-American American women over 65, a new study has shown. Chamomile is one of the oldest, most-widely used and well-documented medicinal plants in the world and has been recommended for a variety of healing applications. It is currently widely used as an herbal remedy in Mexico and among Mexican-Americans. Science Daily 

• More Research Hints at Chocolate Benefits: Middle-aged or older folks who ate as much as 3.5 ounces of chocolate-milk or dark- a day seemed to receive heart health benefits, British researchers report in the June 16 issue of the journal Heart. While the study uncovered a link between chocolate and heart health, it didn't prove cause-and-effect. The research team mainly based its findings on almost 21,000 adults taking part in a study that is tracking the impact of diet on the long-term health of 25,000 men and women in Norfolk, England. 

TREATMENT

• Asthma Treatments Fail Older Patients More: Researchers looked at 1,200 patients with mild-to-moderate asthma, especially inhaled corticosteroids, and found that treatment failure occurred in about 17 percent of those aged 30 and older, compared with about 10 percent of those younger than 30. Researchers looked at 1,200 patients with mild-to-moderate asthma, and found that treatment failure occurred in about 17 percent of those aged 30 and older, compared with about 10 percent of those younger than 30. American Journal of Respiratory and Critical Care Medicine 

• ADHD Med for Menopause Symptoms: A drug, Vyvanse (lisdexamfetamine) marketed for attention deficit hyperactivity disorder might improve memory and concentration problems associated with menopause, a new, small study suggests. Psychopharmacology 

• Popular Heartburn Meds Linked to Heart Attack: Using medical records from nearly 300,000 U.S. adults with acid reflux disease (commonly called heartburn), researchers found that the risk of heart attack was slightly elevated among those using proton pump inhibitors (Prevacid, Prilosec and Nexium). Another class of heartburn drug -- so-called H2-blockers (Zantac, Pepcid and Tagamet) -- was not linked to any increase in heart attack risk. PLOS One 

• Using Same Hospital for Complications After Surgery Lowers Death Risk: Surgery patients who suffer complications after discharge from a hospital are more likely to die if they're readmitted to a different hospital than where they had their original operation, a new study finds. The Lancet 

OTHER

• People with Depression More Likely to Develop Parkinson’s Disease:“We saw this link between depression and Parkinson’s disease over a timespan of more than two decades, so depression may be a very early symptom of Parkinson’s disease or a risk factor for the disease.” The researchers also examined siblings, and found no link between one sibling having depression and the other having Parkinson’s disease. “If the diseases were independent of each other but caused by the same genetic or early environmental factors, then we would expect to see the two diseases group together in siblings, but that didn’t happen.” Neurology 

• Depression Linked to Death in Patients with Heart Failure: Heart failure patients with moderate to severe depression had a five times higher risk of death than those with no or mild depression, researchers found. European Society of Cardiology 

• Over 4 Million Workers Suffer From Anxiety Disorders: A new study finds that 4.3 million Americans with full-time jobs had an anxiety disorder in the past year. That number represents 3.7 percent of full-time workers aged 18 and older, according to the U.S. Substance Abuse and Mental Health Services Administration (SAMHSA). 

• Almost 1/3 of the U.S. population are informal Caregivers: Providing about 1.2 hours of unpaid work, American provide the equivalent of about 30.5 million full time care aides. Interestingly, the sandwich generation, those caring for parents and children, only makes up about 3% of this population. The elderly were frequently cared for by spouses not their adult children. About 20% of caregiving time spent on people 80 years or older comes from people of the same age.  Older men provided slightly more spousal care than women, Zagheni said, which might be explained by men dying earlier, possibly before they need much care, and women living longer but being in poor health at older ages. And much less caregiving time was spent on elderly people compared with young children. Across the various age groups, elderly people received caregiving typically no more than 1.5 hours daily, on average, compared with six hours for young children. Population and Development Review 

Take a Break: Make Tiny Paper Houses

On Saturday evening, I walked into a friend’s studio and was greeted by tiny little houses that were lit up. Being so close to Mid Summer Night’s Eve, my first thought was of fairy houses.

Using the various templates below, create fairy houses, streetscape, a small village, a scary house or something else. Light them with the LED tea-lights, so your hard work won’t go up in flames.

• Little Paper Houses from Just Something I Made 

• Paper House Luminaries and Mobile 

• 3 Paper Lantern Craft Houses 

• Gingerbread House 

• Tea light Paper Houses 

• 15+ Free Printable Houses 

Not interested in today’s activity? Check out the Take a Break Pinterest for lots of Take a Break ideas.