Caregiver Burnout

Many family members who find themselves caring for a loved one may be unable to recognize their own limitation before the strains and stress of their care giving activities turn them into a patient as well. This is especially true for someone who started out providing intermittent assistance to someone with simple tasks as shopping, errands, or bill paying who, as their loved one declines ends up providing heavy personal care such as bathing and dressing. Studies have shown recently that nearly 25% of American families are caring for an aging family member, friend or adult child with disabilities. Part of the art of being a successful caregiver in the ability to set expectations, see one’s own limitations and learn to care for ourselves as well as others.

In many cases, care giving responsibilities saturate one's life to the extent that we may not even recognize what was once our "normal" routine. The responsibilities for providing care for someone else can become gradually overwhelming as the personal needs of the loved one inevitably increase over time. But burnout isn't like the flu with defined and recognizable symptoms. It creeps up on you gradually over time. You may wake up one morning look into the mirror and not even recognize the person or professional that you once were.

Symptoms of burnout can have a profound influence on your quality of life. Most caregivers experience a heightened sense of helplessness and depression along with a sense of ongoing and constant fatigue. Care giving activities for others may force a withdrawal from social contacts and friends who are your primary support structure, or even cause you to lose interest in work where you may receive professional validation. Still others may experience a change in eating habits, or an increasing use of stimulants and alcohol. While most people can endure and recover from some of these symptoms, they tend to accumulate over time and increase in severity. Eventually they can have a dramatic impact on the overall health of the caregiver and their ability to effectively provide care for someone else. Ultimately this can lead to a collapse of the "cushion of care" that was originally intended and render the caregiver a patient himself or herself. This can create a cycle of failure, which becomes self-perpetuating.

Strategies to cope with burnout are critical to maintaining the health of both parties. Acknowledge your emotions and find an outlet for them. Feelings of anxiety, worry, anger, guilt, sadness and resentment are normal, and should be shared with others. Most communities have well-organized networks of support groups. These are groups of people who have experienced similar family crises and have banded together to help one another. Support group meetings such as those sponsored by the Alzheimer's Association provide a monthly forum for caregivers to receive feedback and coping strategies from others in the same predicament.

Recognize the importance of your own identity, and allocate some personal time for things you enjoy such as exercise, hobbies, other family members, and even some "quiet time." Establish some understandings regarding what an emergency is, and more importantly what is not an emergency requiring your immediate response or interruption. Do not hesitate to say "no" if the problem can wait, someone else's crisis only becomes yours if you accept it. Knowing what things can wait can provide you more control over your life. Also recognize that the more you do for someone, the more dependent they can become. Studies have shown that starting or completing tasks for people can offer more independence for both than doing it all for them "quickly." Try to focus of what abilities remain rather than those that have become lost or difficult. This helps to build confidence, rather than leaving you with the feeling that you can never do enough.

Don’t allow yourself to get into a rut. Often caregivers can become so wrapped-up in handling one problem after another that they can lose perspective. Varying the responsibilities of the caregiver is a way to stay fresh. If possible rotate tasks between other family members, or look into day care to give yourself some personal time during the day. Most senior living providers also offer respite programs to allow short-term residency while caregivers take a well-deserved rest or vacation. These programs can provide the caregiver some peace of mind in knowing that professionals are looking after Mother or Dad so that the caregiver can relax, recharge and regain their perspective. Respite can also serve to introduce your parents to the concept of assisted living so that they can overcome any fears they might have of living there one day. Once they see that others have made the choice to live there and how their lives and family relationships have improved as a result, they might consider the option for themselves.

Recognize that you do not have to do it all. Being a good caregiver doesn't mean that you have to be a martyr. If other family members are giving you direction and advice, then they should share in the burden. Learn to ask for and accept help from others, maintaining a balance in your life will help you avoid future burnout. Take time for yourself to recharge and to nurture your own family and friendships. Make time to protect your own health; you will need it now more than ever.

Is Alzheimer's Memory Care a Tax Deductible Expense?

Over the years I have been asked countless times by residents and families "Are the costs associated with the care they receive tax deductible?" While much of the tax code is subject to varied interpretations, and each individual should seek competent advice from their own professionals, it appears that the answer to this question is "likely."

Section #213 of the publication Selected Federal Taxation Statutes and Regulations states "There shall be allowed as a deduction the expenses paid during the taxable year not compensated for by insurance or otherwise for medical care of the taxpayer, his spouse or a dependent to the extent where that expense exceed 7.5 percent of adjusted gross income." The exact definition of medical care has been further explained in Section 1016 "If an individual in a nursing home or a home for the aged because of his physical condition and the availability of medical care is a principal reason for his presence there, the entire cost of maintenance, including meals and lodging is deductible." The key distinction is the purpose of living there. If it is for personal or family reasons, then only the portion of the cost attributable to medical or nursing cost is deductible. The reason that the deductibility becomes cloudy is that service fees in assisted living facilities bundle the medical care component with room and board, making it difficult to determine or justify what portion of the rent covers the care of the resident. Further, most assisted living facilities go out of their way to advertise that they are not a medical care facility. Officially it is defined as: "Assisted living facilities are a type of living arrangement which combines shelter with various personal support services, such as meals, housekeeping, laundry, and maintenance. Assisted living is designed for seniors who need regular help with activities of daily living (ADLs), but do not need nursing home care." Under this definition the deductibility of costs associated with these facilities may be hard to justify.

Publication 502 by the Department of the Treasury, Internal Revenue Service entitled Medical and Dental Expenses helps to clarify the question. "You can include in medical expenses the cost of medical care in a nursing home or home for the aged for yourself, your spouse, or your dependents. This includes the cost of meals and lodging in the home if the main reason for being there is to get medical care. Do not include the cost of meals and lodging if the reason for being in the home is personal. You can however, include in medical expenses the part of the cost that is for medical or nursing care." This means that in an assisted living facility, unless the purpose of the stay is to receive medical care, the cost of lodging and meals may not be deductible.

However, if the individual is chronically ill, as defined under the section entitled Qualified long-term care services all costs associated with the care and supervision of the individual may be tax deductible subject to the 7.5 percent adjustment. Chronically ill is defined in Publication 502: "A chronically ill individual is one who has been certified by a licensed health care practitioner within the previous 12 months as: 1) Being unable for at least 90 days, to perform at least two activities of daily living without substantial assistance from another individual, due to the loss of functional capacity. Activities of daily living are eating, toileting, transferring, bathing, dressing, and continence or 2) Requiring substantial supervision to be protected from threats to health and safety due to severe cognitive impairment." With the enactment of the Kennedy-Kassebaum bill, the law is now clear. Congress stated clearly that the tax code should provide equal consideration for persons with Alzheimer's disease or other irreversible dementia. The only cloudy area remaining is the fee structure of the facility in which they reside.

Another important consideration is the entrance fee, lifecare fee or "founder's fee". "You can include in medical expenses a part of the lifecare fee or founder's fee you pay either monthly or as a lump sum under an agreement with a retirement home. The part of the payment you include is the amount properly allocable to medical care." Many of today's assisted living communities charge an entrance or maintenance fee. This fee is intended to cover administrative processing and maintenance of the property, rendering it a non-tax deductible expense according to the Internal Revenue Service.

Memory Care Units, which are dedicated to caring for people with Alzheimer's disease and related dementia rendering substantial supervision to protect residents from threats to health and safety due to severe cognitive impairment, meet the test. Residents fall under the care of licensed health care practitioners who certify their status. In units specifically designed for the care of those with Alzheimer's disease and related dementia, the care, meals and lodging are in integral part of the complete service plan to constitute "medical care." An entrance fee, if it is intended to cover the cost of the initial assessment, and development of the plan of care for the resident and relates completely to medical care, should qualify it as tax deductible under the definition.

What does all this mean? Well, depending upon your personal income, the deductibility of your monthly fees in a special care unit properly qualified can result in an annual after tax savings of between 15 and 20 percent. If you are looking at several different providers offering similar environments and care, this after tax savings could be a deciding factor on who to choose. So it might be more than worth your while to check this out with your accountant or financial advisor prior to making your decision on where to place your loved one.

Alzheimers and Dementia at Holiday Time

Maintaining (or adapting) old family rituals and traditions helps all family members feel a sense of belonging and family tradition. For an Alzheimer’s resident, this link with a familiar past is reassuring and builds self-esteem. Remember that your situation is different now; you must set your own limits early on and be clear about them with others. You do not have to live up to the expectations of friends or relatives. Simplify!

Encourage family and friends to visit, even if it is painful for them, but keep the number of visitors at any one time to a minimum. Explain to the guest as clearly as possible what they might expect from the resident–particularly odd or unusual behavior that may occur. Make clear that the resident’s memory loss makes it impossible for him or her to remember what is acceptable, but that he or she still needs contact with family and friends. In addition, several days before the guests arrive, begin showing the resident photos of the people you expect to visit. Spend more time each day explaining who each person is. If possible, arrange for the resident and the guest to talk on the telephone; they will all get a better idea of what to expect when they meet.

Try some simple holiday preparation with the resident several days ahead.  Observing preparations will familiarize him or her with the upcoming festivities and participating with you will allow the resident to experience the pleasure of helping and giving as well as the fun of anticipation and reminiscing.

Prepare potential quiet distractions (e.g. a family photo album or a simple repetitive chore like cracking nuts) to be used if the resident becomes upset of over stimulated.  Try to avoid situations that may further confuse or frustrate the resident–crowds of people who expect the resident to remember them, loud conversations or music, strange surroundings, changes in light intensity, overindulgence in rich food or drink (especially alcohol), changes in routine and regular sleep patterns.

If you receive an invitation to a holiday celebration, which the resident cannot attend, go yourself.  Enjoy the chance to be with friends and family and remember that your missing a fun occasion will not help your loved one.

START NEW TRADITIONS 

Look at the holidays as a chance to start new, simpler traditions. Do not let “what you have always done” bind you to do something that will not nourish and comfort you. Give yourself permission to make changes and to be flexible.

RELIVE HAPPY MEMORIES 

Pick several memories of past holidays to reminisce with your Alzheimer’s family member. Do so frequently.

ASK FOR ASSISTANCE

Sometimes it is impossible to get everything done. Others may want to help but are unsure what to do and are waiting to be asked.

ENJOY YOUR FAMILY 

Don’t forget the rest of your family, especially the children. Total involvement means happier times.

TREAT YOURSELF 

All too often, people place their own needs last. Don’t neglect yourself during the holiday season, plan to do something just for you.

INVOLVE THE ALZHEIMER’S PERSON 

Encourage participation in the holiday preparations and festivities. Allow them to help with wrapping gifts, baking and caroling activities.

REMEMBER LIMITATIONS 

Maintain normal routines as much as possible. Plan smaller, quiet gatherings that are less stressful. Remember your own limitations as well.

PREPARE VISITORS 

Alert visitors to changes in the person and provide hints for successful visits and appropriate gifts.

AVOID ALCOHOL AND DRUGS 

Don’t use them as a means to cope, as they can intensify depression and feelings of loss.

PREPARE FOR POST-HOLIDAY LETDOWN 

Arrange for respite care so that you can enjoy a movie or visit a friend to help reduce post-holiday stress.

GIFT IDEAS  

• Easy to remove casual clothing

• Tapes of favorite music

• Home video of family members

• Videos of animals, travel, old-time comedy shows such as “I Love Lucy” or the “Honeymooners”

• Photo albums

• Gardening and flower arranging supplies

• Bird feeder

• Active games such as balls, indoor bowling

• Card games such as “Uno,” “Rumicube”, dominoes, trivia games

• Magazine subscriptions such as “Good Ole Days,” “Ideals,” “Reminisce”

• Puzzles with an adult theme and no more than 100 pieces

• Poetry and prayer books

• Stencils to trace, easy craft projects

• Sweaters

• Sewing cards, large beads to string

• Adult coloring books

• Colored pencils

• Tote bag

• Socks

• Old time radio tapes

• Hampers

• Coffee table type picture books

• Door decorations

• Teddy bears, hand puppets and life-like dolls

• Tablets and pencils

• Calendars

Ten Durable Truths for Managing People

1. No matter how much you spend on marketing, you can’t sell something to people that they don’t want to buy. You must deliver a quality product, you can not spend yourself out of an operations problem with marketing dollars.
2. If your employees do not believe in your mission, your agenda will not advance no matter how often the pay is raised or the boom is lowered.
3. Your reputation is in the hands of your front line staff, they are the face of your company to your customers. Treat them exactly how you want your customers to be treated.
4. You can never really trust someone until you have endured a hardship with them. Loyalty is often forged in the furnace of failure. People will decide who to respect and who to follow based upon how you respond to problems. Embrace problems, for they can be opportunities to build loyalty and trust.
5. All work is teamwork. People perform best when they work together. Everyone needs to feel equally important. Each with their oar in the water pulling in unison, not because they are paid to do so, but because they believe its the right thing to do. Every team member has a crucial role to play in the operation.
6. The lower you are on the totem pole, the more you crave respect. If your opinion is solicited and your contribution is respected, you will feel valued. Valued employees feel a sense of belonging and strengthen your reputation.
7. Build employee confidence and empower them to make decisions on the spot. Confident and happy employees who are trained to believe what you believe are your best marketers.
8. Recognition is the fuel for staff satisfaction. Seek out opportunities to celebrate success, recognition will energize weary associates. Praise in public discipline in private. 
9. Lead by example. Operate in the center of the field of ethical behavior, never on the sidelines. Character is what you do when no one is looking. People want to believe in their leader, don’t let them down. Remember consistency = credibility. Treat the people below you the same as you treat people above you. 
10.  People will evaluate your leadership not by all the things that went right, but rather by how you responded when things went wrong. Look for solutions to problems not blame. Supporting people when they are vulnerable is an opportunity to build a cohesive team. A good team leader listens to people and encourages them to take risks and not be afraid to make mistakes. No one ever learned anything from doing things right.

Depression and Dementia

In a recent study researchers found that depressive symptoms were more than twice as common among assisted living residents with mild or moderate dementia than among those without dementia. Depressed residents often do not have positive outcomes and are greater risk of discharge to nursing homes and death. Chronic depression can lead to loss of appetite and weight loss, lethargy, and a host of other premature health complications. Findings of the study document the high prevalence of depressive symptomatology among those with dementia. About 54% of the depressed and 33% of the non-depressed participants were taking antidepressant medication.1 Sixty-two of the participants of the study were depressed had no formal mental health treatment. Depression was more common among participants with severe dementia, behavioral symptoms and those with pain. The study also found that over half of the depressed participants were undetected by staff.

These results indicate a strong need to properly assess residents for depression. Seeking interventions for those suffering who are undiagnosed and corrective actions for those currently treated for depression who may not be depressed can derail potential problems. Identifying these at-risk residents and advising attending physicians and family members may help operators to avert unnecessary mental health triggered discharges, while improving the quality of life for each individual.

The Cornell Scale for Depression in Dementia (CSDD) was developed in response to a need in the industry for a diagnostic tool to quantify incidence of depression in elderly populations with dementia2. This simple 19 question tool enables operators to identify at-risk residents who are suffering from depression and are undiagnosed so that they might be treated, and also identify those who may be already prescribed antidepressants who may not in fact be depressed. This way attending physicians may be offered a nationally recognized diagnostic tool to use to evaluate and prescribe for their patients, rather than relying upon sporadic observations from caregivers and family members.

Using the Cornell Scale for Depression in Dementia (CSDD) operators can create a team consisting of nurses aides, LPNs and/or RNs familiar with the residents to review their collective impressions of each resident, evaluate and identify any depressive characteristics in each of the 19 symptomatic areas. This information can then be tallied and charted to evaluate risk potential. Medication dose, frequency and indication information is also collected to help evaluate the adequacy of any current treatments in place.

Upon collection of the pertinent data, the resident's physician or a consultant Psychologist or Neuropsychologist reviews this information and evaluates the appropriate treatment options for each individual, including perhaps a multidisciplinary review if appropriate. The involvement of mental health professionals in the assessment and treatment of depression in assisted living was found in the study to be alarmingly low. Less than 50% of the depressed participants were receiving any professional help.

Among the key domains of care, depression was the quality-of-life domain with the lowest perceived treatment success1. Perhaps the main reason for this is that such a high percentage of residents are undiagnosed, or inappropriately treated. Empowered with the survey results, management can develop treatment protocols for each resident now properly diagnosed, and train staff on the recognition of depression symptoms and how to effectively deal with them. Further, involvement from mental health professionals can contribute significantly to resident wellness.

The process is very simple and can be fun and enlightening with potential to positively impact the lives of the residents and contribute significantly to their overall quality of life and well-being.

1. Baldini-Gruber, Ann, Zimmerman, Sheryl, Boustani, Malaz, Watson, Lea, Williams, Christianna, Reed, Peter. Characteristics Associated with Depression in Long-Term Care Residents with Dementia. The Gerontologist. Vol. 45, October 2005, Page 50-55.

2. Alexopoulos, G.S., Abrams, R.C., Young, R.C., & Shamoian, C.A. Cornell Scale for Depression in Dementia. Biological Psychiatry, 23, 1988, Page 271-284.

Combating Appetite Loss in Seniors

It is not surprising to find that seniors almost unanimously name meals when asked what is the single most important aspect of their daily life in a retirement community. Mealtime brings seniors together for socialization and companionship, and for many it represents the only time during their day when they can share their frustrations about the effects of their own aging process with others who can relate to them. This is particularly true for new seniors or those with serious medical conditions or ailments. Although many seniors readily accept most of the effects of aging, they can be very challenging for others. Most people understand that as we age, the way in which we experience our world through our senses of sight, hearing, touch, taste, and smell changes as those senses deteriorate over time. As our visual acuity diminishes, we wear corrective lenses; with auditory loss, we wear hearing aids. However, the least accepted and least understood deprivations are those of taste and smell, the two senses that primarily control the body’s ability to experience food. Disorders of taste and smell are viewed as affecting the “lower” senses—those involved with sensual and emotional life—rather than the “higher” senses that serve the intellect.

The taste and smell of food have a major effect on levels of food intake and the maintenance of good nutrition. Losses and distortions in these chemosensory mechanisms contribute to a significant degree to anorexia in the elderly. Taste and smell are considered chemical senses because they are stimulated by molecules that contact receptors in the mouth, throat, and nasal cavity. The sense of taste is mediated by taste buds located on the dorsal surface of the tongue and on the epiglottis, the larynx, and the first third of the esophagus. Olfactory receptors are bipolar neurons located in the upper portion of the nasal cavity that project into the limbic system of the brain. The limbic system also processes information associated with emotions, so there is, in fact, a medical explanation for the emotional response we have to food. The olfactory bulb shows considerable degenerative changes during aging, and cross-sections of the bulb often look “moth-eaten” owing to losses in the number of cell bodies of neurons. Those losses are especially profound in patients with Alzheimer’s disease.

Because of reduced function in these key chemosensory systems, the natural biochemical responses designed to break down food as it enters the body are consequently also less active. When the body smells, tastes, or simply sees appetizing food, a number of biochemical responses are set in motion to aid subsequent digestion. For example, saliva builds up in the mouth, gastrointestinal juices are released into the stomach, plasma insulin is released into the bloodstream, and the pancreatic system is engaged. All these responses have the combined effect of aiding absorption of food and promoting overall nutrition. As the aging process affects the body’s internal response to food, seniors do not enjoy food as much or absorb it as well, and as a result they can become vulnerable to malnutrition, which can contribute further to health problems.

Taste and smell decrements arise not only from the normal aging process, but also from certain disease states, pharmacological and surgical interventions, the effects of radiation, and environmental exposure. Similar medical conditions and drugs affect the sense of smell. For example, most people have experienced the metallic taste of orange juice after brushing their teeth; the chemical in toothpaste responsible for this effect is sodium lauryl sulfate, which is also used to help fat-soluble drugs dissolve. Most elderly persons take their medications with their meals to offset the potentially harmful effects of the drugs on the stomach lining, which in turn affects their ability to taste and smell their food. Their senses are inhibited by these drugs, as is their digestive system, and this effect can at times induce a negative reaction and in severe cases lead to malnutrition.

Many medications commonly taken by the elderly are prescribed to be taken with food. Typically, seniors in a retirement community will take their medications in the privacy of their rooms before coming down to the dining room for a meal. By the time their meals actually arrive at the table 30 minutes or more could have passed, giving the medication taken on an empty stomach ample time to be absorbed into the bloodstream and the opportunity to adversely affect the seniors’ ability to taste and smell their food. Simply advising seniors to take their medications after they eat rather than before can have a profound effect on their overall dining satisfaction. In fact, at one community, after the seniors were educated about this concept, senior satisfaction in food and beverage service increased by 10 percent over the previous survey, while perceptions of all other conditions remained constant.

Measurements of taste and smell dysfunction in older adults reveal a progressive decline with age. Those losses tend to begin around 60 years of age and become more severe in persons over 70 years of age. In most retirement communities, the chef and cooking staff have an ability to taste and smell that is more than twice as acute as that of the people for whom they are cooking. In one study, persons between the ages of 20 and 70 had approximately 206 taste buds each. This number was reduced to 88 taste buds for persons between the ages of 74 and 88 years. The average age of seniors in retirement communities today is about 82 years. Therefore even the best-qualified chefs working with the freshest natural ingredients are working at a considerable disadvantage, and they will express their frustration in trying to address this problem using conventional methods. Seniors may inadvertently harm themselves by trying to amplify the flavors of their food by using too much salt at the table, or by eating too much dessert because they can still enjoy the sweet taste of many of these offerings. Compensating in these ways, however, only leads to nutritional imbalances and could be in direct conflict with doctor-prescribed dietary guidelines.

 Recent studies suggest that the amplification of foods and beverages with naturally produced flavors can increase preference ratings as well as subsequent intake and absorption in elderly persons with known chemosensory losses. These commercially produced flavor enhancers, which are inexpensive (adding less than a penny to the per-meal cost), are made by reducing food such as chicken and capturing and concentrating natural flavor and odor molecules. The concentrate can then be attached to a “carrier” (such as water, oil, or flour) and added to the food. This added flavor contains no fat, salt, or other harmful products traditionally associated with flavor enhancement. Table 8.6 gives the percentage of elderly persons who preferred flavor-enhanced foods in one study at Duke University Medical Center.

Flavor-amplified foods not only are preferred from a sensory standpoint, but also can influence the body’s natural biochemical response to food, actually promoting better absorption and, as a result, improving the immune status of elderly persons. In a study by Schiffman and Warwick in 1993, elderly persons were offered regular food for three weeks, then flavor-enhanced versions of the same food. Blood samples were taken before and after the use of the flavor enhancement. They showed an increase in levels of T and B cells (white blood cells), the body’s natural defense agents against disease and injury. Schiffman’s research confirms that as the body’s biochemical absorption of food improves, so do nutrition and immune status. This research suggests that the addition to recipes of natural flavors that increase the perceived flavor intensity would improve satisfaction with the food and compensate for chemosensory losses due to normal aging, diseases, and prescription drugs. It can be argued that the use of flavor enhancements can actually promote better health as well as improve senior satisfaction.

Learning that deprivation of taste and smell is a normal part of their aging process and that changes can be made to compensate for it becomes as natural to seniors as wearing glasses to augment failing eyesight. Additionally, seniors become aware that their enjoyment of food is enhanced by this flavor-amplification technique. It is also gratifying for them to see that management is willing to combine this knowledge with its culinary expertise to create a more tailored and flavorful dining experience.

The increased preference for flavor-enhanced food is extraordinary. In fact, many manufacturers of convenience products, such as Stouffers and Tyson, now list natural flavors among their ingredients. When a convenience product and its scratch-made counterpart are served, the convenience product is often better received than the homemade one. This is simply because the commercial product is higher in flavor than the homemade product as a result of added natural flavor. Certainly natural products are important and should represent the primary ingredient source. The addition of fresh herbs and spices and pretreating with marinades should not be abandoned. We walk a fine line, however: for if too many herbs and spices are added, the seasoning then overpowers the main ingredients. Often seniors’ delicate digestive systems become agitated when aromatic herbs and spices are not used in moderation.

Flavor enhancement improved food intake in 20 out of 30 foods tested. Research has confirmed an improved immune status as measured by the total level of blood lymphocytes, which help to fight diseases inherent in the elderly population. In addition, seniors feel better about their dining experience, and opioid (endorphin) levels increase as seniors’ ability to sense their food improves. It has actually been proven that seniors become physically stronger as well. With flavor enhancement, seniors are less interested in fatty foods and in adding salt to their entrees, and thus they are better able to adhere to their doctor-prescribed dietary guidelines.

Caregiver Stress - A respite can build your resilience

According to the results of a new study of the health of caregivers, there is mounting evidence that explains why caregivers often become patients themselves while caring for a loved one.

 Individuals caring for a spouse with dementia show four times greater annual increases than noncaregivers in interleukin-6 (IL-6), a key immune system molecule linked in previous studies to increased risk of cardiovascular disease, osteoporosis, arthritis, adult-onset diabetes, and a greater likelihood of death, Janice K. Kiecolt-Glaser and colleagues report in the June 30 edition of the Proceedings of the National Academy of Sciences.

Caregivers’ relatively higher levels of IL-6 may provide part of the biological explanation for a growing body of evidence implicating care giving as a risk factor for a variety of illnesses. In addition to showing accelerated increases in IL-6, caregivers report greater loneliness and feelings of stress and score higher on measures of depression than non caregivers.

 For caregivers whose spouses died during the study, elevated IL-6 and feelings of loneliness and depression persisted for at least three years following bereavement. One explanation for this persistence may lie in the well-documented social isolation and loss of support that result from extended care giving. Caregivers may emerge from their care giving responsibilities with many fewer social contacts than they had before their spouses developed dementia. Social isolation, which has also been linked to increased risk of illness and death, may be an important factor in perpetuating caregiver stress.

Often caregivers underestimate the demands of providing care for another can have on them.  While it is important to try to maintain a positive attitude, often caregivers experience feelings of helplessness and lack of control over their situation.  Caregivers who educate themselves about the diseases affecting their loved one will be better equipped to recognize and understand changes associated with progression of the disease and the aging process.  This way they can be more capable of anticipating and dealing with changes as they occur rather than being caught surprised and unprepared.

It is also important to set reasonable expectations.  A child can never change a lifelong relationship by taking on caregiver responsibilities as the need arises.  Be realistic and understand that if anything, the stress associated with caregiving can often expose already weak areas in a long term relationship in even the best of situations.  Appreciation for ones contributions should not be expected by the caregiver or from other family members.  Caregivers who provide care without expectation will be rewarded if gratitude is offered and not disappointed if it is withheld. Learn to take pride in your own accomplishments.

It is critically important to strive for balance in your life.  Personal fitness, good nutrition, and maintaining social contacts can all help keep caregivers energized.  If the caregiver is beginning to feel frustrated, angry or like a martyr, it may be time to consider a support group, or a respite.  Most communities, hospitals and churches host disease specific support groups where fellow caregivers can come together to share their experiences and help each other.  Sometimes it may be helpful to just come and listen to others and see how they have learned to cope with their caregiver responsibilities.  Often caregivers themselves can offer the best support to each other because of their own personal experiences.

Acknowledge your emotions and find an outlet for them.  Most caregivers will experience frustration, anger, guilt, resentment, self-doubt, and feelings of helplessness.  These can all lead to stress which as the study revealed can contribute to health problems of their own.  Caregivers need to find some time to nurture their own needs.  Better to consider lowering your expectations when they are unmet rather than allow yourself to become stressed out by them.  You can only do so much, better to say “no” if you can then have your own health slide attempting to do the impossible. Learn to ask for and accept help from others before its too late.  Most siblings will participate in solutions for the care of a parent if they are pushed, asking for help does not need to mean that the primary caregiver is relinquishing control or backtracking.  Its is better to teach others what the caregiver has learned and empower them to help than to try to do it all one’s self.

Maintaining a positive attitude is very important.  A stressed out caregiver is highly susceptible to depression.  Depression has been known to adversely affect the immune system.  This is why people who are left alone and isolated often suffer catastrophic health failures, while their socially active counterparts remain relatively healthy.  Learn to recognize when your care giving duties begin to drag you down and find a way to get away for some time alone or with friends. 
Day care, respite and other short-term stays in assisted living or memory care are available in most senior living communities at reasonable rates.  Residents who are around other people tend to perk up and complain less.  Most seniors find the experience very fulfilling after a short period of complaining about it.  It also introduces Mom to the concept and people living there and helps to derail her fears about it.

Mother may have “known best” when you were a child, but now that roles have reversed, it may be time for the caregiver to do what he or she thinks is best for them.  After all how often did your mother allow you as a child to talk her out of what she thought was best for you?  A short term stay can also afford the caregiver opportunity to recharge their own health and attitude treating both to a better situation.