The Perfect Holiday Caregiver: It’s All a State of Mind

by Anne Pagnoni

The holidays are always a wonderful time of year for family gatherings, reflection on what we have and the spirit of giving. The television is packed with specials showing relationships and families coming together for the holidays. But the holidays can also be a time of stress and sadness for those who are caring for family members that are struggling with health problems, frailty, dementia and loss. Those who care for these individuals may feel overwhelmed, frustrated, depressed or resentful as they watch “perfect” families enjoying the holidays. There are many surveys and documents that show that caregivers are highly susceptible to these feelings. If you are a caregiver, there are measures you can take to avoid this.

First: you are not alone.

If you are new to caregiving or have been caring for someone for a very long time, remember that the perfect family on television is not reality for many Americans. You are not the only one with these challenges. A recent study by the National Alliance for Caregiving and AARP found that 44.4 million Americans age 18 or older are providing unpaid care to an adult. In fact according to the survey provided by the National Family Caregivers Association:

• The typical caregiver is a 46-year-old Baby Boomer woman with some college education who works and spends more than 20 hours per week caring for her mother who lives nearby.

• Female caregivers provide more hours of care and provide a higher level of care than male caregivers.

• Almost seven in ten 69%) caregivers say they help one person.

• The average length of caregiving is 4.3 years.

• Many caregivers fulfill multiple roles. Most caregivers are married or living with a partner (62%), and most have worked and managed caregiving responsibilities at the same time (74%).

Second:  find help.

There are many resources available to a caregiver. Some of these include family members, friends, a local religious group, elder care agencies and homecare providers. The internet provides many great resources and help. The National Care Planning Council offers many articles, brochures and local referrals to help caregivers find the help that they need.

“When my husband’s stepfather was released from the hospital in December of 2009, he called us to give him a ride home. Once he was home, we quickly realized that he was not able to care for himself at all. He lived alone and we found ourselves driving back and forth three or four times a day to assist all of his needs. It was overwhelming and frightening to suddenly become a caregiver to a man we weren’t even that close to. With my husband working full time days, I became his primary caregiver. I would pack up my two little girls every day to come with me to take him to the doctor, do his laundry and feed him his meals, do his grocery shopping and help him with his bills. I had no idea what his finances were like or how to pay his medical bills. He was too sick to care or even understand what I was saying to him. I quickly realized I was going to have to find help. First I called his children. They were sympathetic, but gave all kinds of excuses as to why they could not help. Next, I went to the internet. I went to the website for National Care Planning Council www.longtermcarelink.net and found and contacted a Care planner in my area. The Care Planner came to my stepfather’s house and met with the two of us. They helped me get organized and set up time to meet with someone to explain his Medicare services and what my next steps would be. It was such a relief to have a plan and to know what to do.” MH- Salt Lake City, Utah

Most family members are willing to help, but just don’t know what to do. Many caregivers feel that they are the only one who can give the best care. It is important to communicate with other family members about what kind of help you need and let them know specifically what they can do.

A number of organizations and private companies will give you advice and guidance -- many for free. If your care recipient has a very low income, you might get free help from your local Area Agency on Aging. A lot depends on available funds. Click here for a nationwide list of agencies.

A good source for professional advice is the rapidly growing business of non-medical home care companies. Most will offer free consultations and will provide paid aides to help you with your loved-one with such things as bathing, dressing, shopping, household chores, transportation, companionship and much more. These people may also help you coordinate adult day care or other community services.

You may wish to pay for a formal assessment and care plan from a professional geriatric care manager. Even though it may cost you a little money to hire a care manager, this could be the best money you will ever spend. Care managers are valuable in helping find supporting resources, providing respite, saving money from care providers, finding money to pay for care, making arrangements with family or government providers and providing advice on issues that you may be struggling with.

Lastly: it is important to take care of yourself first in order to give effective and loving care.

Stephen Covey tells a story in his book The Seven Habits of Highly Effective People about a man who is sawing a tree. A woman approaches and asks the obviously exhausted man how long he has been sawing the tree. He tells her that he has been there for hours.

She says “Well, I see that your saw is dull, if you would just sharpen your saw you would be able to saw it much faster and with less effort.”

He replies, “I don’t have time to stop and sharpen my saw, I need to chop this tree down now!”

It seems pretty silly that the man just doesn’t stop for a few minutes to make the work easier. It is common for caregivers to do the same thing. They focus on caring for their loved one and run themselves down instead of stopping to “sharpen their saw”.

Covey states that “sharpening the saw” is to take care of yourself by keeping your physical, mental, emotional and spiritual self balanced. There is joy and respite in balancing all of these areas in our life. This is what makes us efficient and happy. Here are some ways for you as a caregiver to sharpen your own saw:

• Maintain a positive attitude. Take time to be grateful for everything that is good in your life. There is always something. Adjust your expectations for the holiday season. If you aren’t expecting that perfect holiday family picture, then you won’t be angry and frustrated that it isn’t something you have right now. It is always possible to change your attitude and perceptions, but it is not always possible to change your circumstances.

• Eat healthy food and be sure to get some exercise. Do this in small increments if it is too overwhelming to plan menus. Drink more water, cut down on sugary snacks, pick up some vegetables and fruit to grab. Walk or do marching in place. Run or walk up and down stairs if that is all the time you have right now.

• Forgive and let go of frustrations, anger, resentment and guilt. These are common feelings for caregivers. The best thing a caregiver can do for their own emotional health is to clear out these negative thoughts and feelings. Get counseling, talk to a friend or family member or simply write down the negative feelings to get them out of your system. Never take your anger and frustrations out on those you care for.

• Take time to do something you enjoy and give yourself a little bit of rejuvenation everyday. Laughter is a great stress reliever. Find something funny to read or get on the internet and find a funny video to watch.

• During the holidays, be easy on yourself. If you enjoy holiday activities, then get out there and do them. Ask someone to help with your caregiving duties even if it is just for an hour or two to shop or to see a concert or movie. There are day care facilities or home care services available for short term care. See www.longtermcarelink.net for a service in your area.

Being a “perfect” caregiver during the holidays does not have to look like the perfect on-screen holiday family. How you handle your circumstance will be the key to creating your own peace, happiness and cheer during the holiday season. The holidays can be a time of reflection on good things. Your attitude and a little care for yourself can make a big difference in the care that you give in the coming year.

Home Care Assistance of Greater New Jersey Delivers Cost-Free Caregiver Support

By Anne Pagnoni

Being a primary caregiver for another individual is a daunting experience. In addition to making sure that the individual's personal care needs are met, the caregiver is responsible for making financial and health care decisions, managing doctors' appointments, and maintaining a safe living environment for the care recipient. The caregiver needs support, too, during this tumultuous time. Where can the caregiver turn for help? Home Care Assistance of New Jersey is excited to announce its partnership with a free, online, caregiver support program called MyCareCommunity.

Studies show that caregivers find stress-relief in three ways: access to information and tools, support from other caregivers, and the ability to share caregiving responsibilities with family and friends. MyCareCommunity allows caregivers to do just that, by providing a convenient, easy-to-use website that offers:

• Practical advice and expert information
  
• Caregiver blogs, discussion forums and sharing of real-life stories and experiences
  
• Ability to get answers from local NJ professionals on a variety of health and elderly care issues
  
• Search features for care services, care providers and community resources
  
• Access to a private webpage that is focused on the care of a loved one
  

MyCareCommunity has a true Ask the Expert feature. Experts in the field of aging from all over New Jersey have availed themselves to caregivers. Each expert is listed with a short biography which allows caregivers the opportunity to direct their questions to the expert best able to answer their questions.

One of the greatest features of MyCareCommunity is the Personal Communities, which enable users to create a webpage for their loved one and then invite other family members or friends to view it. The caregiver is able to provide updates about their loved one via the personal community, which alleviates the need for the caregiver to make numerous phone calls or send multiple emails with notifications. There is a care scheduler feature, which allows the caregiver to enter appointments into a calendar. All other personal community members are able to see the appointments and offer assistance to the caregiver accordingly.

If you're a caregiver, then take a few minutes and check out all of the features of MyCareCommunity. It's an invaluable resource that will make your caregiving responsibilities easier. By visiting www.mycarecommunityNJ.org, caregivers will find the support and information that they need to assist them in managing their caregiving journey.

Caregiver Stress: Hazardous to Your Health

By Anne Pagnoni
UNDERSTANDING CAREGIVER STRESS
A 2003 study of caregivers by a research team at Ohio State University has proven the off-repeated adage "stress can kill you" is true. The focus of the investigation was the effect the stress of caregiving had on caregivers. The team, led by Dr. Janice Kiecolt-Glaser, reports on a 6-year study of elderly people caring for spouses with Alzheimer's Disease. The study not only found a significant deterioration in the health of caregivers when compared to a similar group of non-caregivers but also found the caregivers had a 63% higher death rate than the control group.
The demands on a caregiver result in a great deal of stress. It is often observed in aging publications that stress can induce illness and depression. The resulting poor health can further decrease the effectiveness of the caregiver and in some cases, as proven by the study mentioned above, even cause premature death.
Stress can be defined as a physiological reaction to a threat. The greater the threat -- the greater the level of stress. A threat is a real or perceived action against our person. Threats may include the anticipated possibility of death or injury but may also include challenges to our self-esteem, social standing or relationships to others or a threat may simply be a potential or real disruption of our established routines. What is stressful to one person may not be to another. For example, bumper-to-bumper traffic might be stressful to the woman executive who is late for an important meeting but to the delivery man who has no deadline and is being paid by the hour, it may be a welcome respite to relax and listen to the radio.
Stress produces real physical changes. In some unknown way the fears in our mind, both conscious and unconscious, cause the hypothalamus and pituitary glands, deep in our brain, to initiate a cascade of hormones and immune system proteins that temporarily alter our physical body. This is a normal human physiological response inherent to the human body when a threat is perceived--real or not. It is often called the "fight-or-flight response" or the "stress response". The purpose is to give us clearer thought and increased strength as well as to activate the immune system to deal with potential injury and to repair potential wounds. When the perceived threat is removed, assuming no damage is done, the body returns to normal.
A team of researchers at Ohio State University Medical Center has found a chemical marker in the blood that shows a significant increase under chronic stress and is linked to an impaired immune system response in aging adults. The team, led by Dr. Janice Kiecolt-Glaser, reports in the June 30, 2003 issue of Proceedings of the National Academy of Sciences on a 6-year study of elderly people caring for spouses with Alzheimer's Disease. With the caregivers, the team found a four-fold increase in an immune system protein -- interleukin 6 (IL-6) -- as compared to an identically matched control group of non-caregivers. Only the stress of caregiving correlated to the marked increase of IL-6 in the caregiver group. All other factors, including age, were not significant to the outcome. Even the younger caregivers saw an increase in IL-6.
The study also found that the caregivers had a 63% higher death rate than the control group. About 70% of the caregivers died before the end of the study and had to be replaced by new subjects. Another surprising result was that high levels of IL-6 continued even three years after the caregiving stopped. Dr. Glaser proposes the prolonged stress may have triggered a permanent abnormality of the immune system.
IL-6 is only one cytokine--an immune system mediator protein--in a cascade of endocrine hormones and cytokines that are released when the brain signals a person is threatened with harm, injury, undue mental or physical stress or death. The hormones prepare the body to react quickly by increasing heart rate, making muscles more reactive, stimulating thought, altering sugar metabolism and producing many more changes that result in the "rush" people experience when they think they may be harmed.
The cytokine release is mediated by IL-6, which takes the role of directing the immune system to gear up to prevent infection, promote wound healing and repair organs and muscles from any injury that may result from the imminent danger. The release of cytokines such as IL-1, IL-6, IL-8, TNF and other proteins such as CRP (C reactive protein) also promote development of inflammation, which is essential for blood cells to home in on injury or infection. In addition, these chemicals promote development of various types of immune system blood cells in bone marrow. This response to harm -- either real or perceived -- is an important and beneficial life-saving activity of a normally functioning body.
The problem is if this response is initiated over and over again, frequently, and over a long period; it can have a dangerous effect on the body. This constant initiation of the stress response is common among caregivers -- especially those caring for loved ones with dementia. Providing supervision or physical assistance many hours a week and over a period of years turns out to be extremely stressful. This type of stress is often unrelenting, occurring day after day and week after week. And the long-term effects of this stress are more pronounced in middle-aged and older people who are precisely the group most likely offering long term care to loved ones.

In most younger people, when the threat lessens or disappears, the body reacts fairly quickly to shut down the stress response and return things to normal. But numerous studies have shown, as people age, the chemical cascade from stress lingers. Over a period of time, this constant chemical stimulus impairs the immune system and results in early aging, development of debilitating disease and early death. In this altered state, the body maintains high, potentially harmful levels of IL-6. The body does not return to normal without intervention.
Prolonged high levels of IL-6 and the accompanying hormones and cytokines have been linked to: cardiovascular disease, type II diabetes, frequent viral infections, intestinal, stomach and colon disorders, osteoporosis, periodontal disease, various cancers and auto immune disorders such as lupus, rheumatoid arthritis and multiple sclerosis. Alzheimer's, dementia, nerve damage and mental problems are also linked to high IL-6. Wounds heal slower, vaccinations are less likely to take and recovery from infectious disease is impaired. People who have depression also have high levels of IL-6. Depression in caregivers is about 8 times higher than the non-cargiving population.
This debilitating response to chronic stress is not unique to humans. Animals are affected as well. A 2004 PBS Scientific American Frontiers Special entitled "Worried Sick", explored the effect of chronic stress on animals. Observations in the field and experiments on animals exposed to chronic stress, uncovered the same phenomenon of debilitating disease and early death found in humans. Blood tests on the affected animals confirmed high levels of IL-6. The work of Dr. Janice Kiecolt-Glaser's team was also followed in the Special.

STRATEGIES TO REDUCE CAREGIVER STRESS
Ask for help.
Most caregivers are reluctantly thrust into their role without preparation because the need for care usually comes with little warning. Caregivers end up operating in a "crisis" mode--arranging medical care and living arrangements, scheduling care time, providing meals and household chores and so forth. Because they are so stressed and burdened, they rarely take time to find out what resources are available to help them. Ironically, caregivers often sever ties with family, friends and support groups about this time just when help from these people is most needed.
As a caregiver you must ask for help. The stress of going it alone is dangerous to your health. If it's difficult to ask for yourself, use an advocate--a sibling, friend or professional care manager --to arrange a meeting and get formal, written commitments from those people who are willing to help you. The extra help will give you breathing room to find all those resources that are there to help you.
Seek care management advice.
A number of organizations and private companies will give you advice and guidance -- many for free. If your care recipient has a very low income, you might get free help from your local Area Agency on Aging. A lot depends on available funds. Go to http://www.longtermcarelink.net/eldercare/ref_state_aging_services.htm for statewide lists of agencies.
A good source of free professional advice is the rapidly growing business of non-medical home care companies. Most will offer free consultations and these companies will also provide paid aides to help you with your loved-one…such things as bathing, dressing, shopping, household chores, transportation, companionship and much more. These people may also help you coordinate adult daycare or other community services. Go to http://www.longtermcarelink.net/a7homecare.htm for a nationwide list.

You may wish to pay for a formal assessment and care plan from a professional geriatric care manager. Go to http://www.longtermcarelink.net/a2bfindmanager.htm for a nationwide list of these valuable care specialists. Even though it may cost you a little money to hire a care manager, this could be the best money you will ever spend. Care managers are valuable in helping find supporting resources, providing respite, saving money from care providers, finding money to pay for care, making arrangements with family or government providers and providing advice on issues that you may be struggling with.
Take time off--find temporary substitutes.
Taking a break from caregiving is just as important as taking a break at work or taking that long-awaited vacation. A care manager may be of help in selecting the best temporary help to give you a break. Or you may make arrangements with family or friends to give you a break from caregiving.
Make plans for funding future care arrangements for you or for a healthy parent.
The analysis of data from three national surveys (Mature Market Institute, National Alliance for Caregiving and LifePlans, Inc) points out that employees caring for disabled elders who have long term care insurance (LTCI) are nearly two times more likely to be able to continue working than those caring for non-insured relatives. In addition, working caregivers of those with long term care insurance said that they were less likely to experience some type of stress, such as having to give constant attention to the care recipient or having to provide care while not feeling well themselves. Also, the group with insurance devoted more "quality time"--more companionship and less hands-on assistance--than the group without.
See if your healthy parent can still buy insurance. If he or she can't afford it, see if other family members might contribute to premiums. There are also useful strategies using a reverse mortgage to buy long-term care insurance and life insurance for your loved ones. You should also consider insurance for yourself so when you need care someday, it won't be so stressful on your caregivers. To learn all about long term care insurance and reverse mortgages go to www.longtermcarelink.net.
Use assistive technology.
There are a number of technologies to make sure your loved-ones are safe while you're away. Such things as emergency alert bracelets and pendants, GPS tracking for wandering, remote video surveillance, telehomecare, sensory augmentation and all sorts of assistive devices to help disabled people cope on their own. Go to www.longtermcarelink.net for more information.
FINDING RESOURCES FOR CAREGIVERS
The free resources of www.longtermcarelink.net are designed to provide you with government provider lists, free care assessments, information and care provider lists for reducing your eldercare burden and the attending stress. The site is a non-commercial source of help. It is the largest and most comprehensive free source of long term care information on the Internet. There are no ads or solicitations or pop-ups. A related site for the veterans aid and attendance benefit is found at www.veteransaidbenefit.org. This is a benefit that could be available to up to one third of all US residents over the age of 65 under certain conditions. It could provide an additional monthly income of up to $1,843 a month for qualifying veterans households.
Stay tuned for additional options that are available to managing caregiver stress!