Information and resources that support your role in caring for a loved one.

Editor’s note: The Caregiving Chronicles blog has partnered with Century Health Systems to bring additional expert information and advice to the MetroWest caregivers we strive to serve at CaregivingMetroWest.org. Century Health Systems, the parent corporation of Distinguished Care Options and the Natick Visiting Nurse Association, has allowed Caregiving Chronicles to get some valuable insight from its staff for our ongoing series of Q&A sessions with caregiving experts.

In this entry, we discuss the causes and signs of caregiver stress, some strategies for coping with it and the importance recognizing and dealing with stress for both the caregiver and the loved one they are caring for. Providing insight is Judith Boyko, MBA, MS, RN, who has served as the CEO of Century Health Systems since it was established in 2001.

Boyko holds a Bachelor of Science degree in Nursing from the University of Pittsburgh, a Master of Science in Public Health from the University of Massachusetts, Amherst and a Master of Business Administration from Clark University. She has been recognized by the Home & Health Care Association of Massachusetts as Manager of the Year in 1997 and received the Deborah Blumer Community Health Leader Award from the MetroWest Community Health Care Foundation in 2007. She can be reached at info@natickvna.org or 508-651-1786.

Boyko: Caregiving isn’t for the faint of heart. Caregivers put in time with their loved ones, support them financially and make sacrifices throughout their caregiving tenure. But while caregiving can be very stressful, it can also be extremely rewarding. Here, we delve into some of the issues faced by family caregivers and provide tips on how to manage them.

Caregiving MetroWest: Why is it so important to manage stress, especially for those caring for a loved one?
First and foremost: caregivers should maintain their own health so that their caregiving duties don’t suffer. It’s difficult to care for a loved one when one feels stressed or “burnt out,” and this feeling can develop into depression or anxiety, rendering caregiving duties even more challenging than they already are. Of course, personal health of the caregiver is also important, independent of her caregiving responsibilities.

 What are the signs and symptoms of stress or burnout in caregivers?
Boyko: Moodiness, exhaustion, adopting poor eating habits and not getting enough sleep are all ways that caregiver stress may present itself. Stressed caregivers may also find it difficult to focus their attention on the person in their care; they may lose control physically or emotionally; and they may even withdraw socially. Other signs of caregiver stress include feelings of despair; a weakened immune system; an increase in alcohol consumption; self-neglect; and difficulties concentrating.

CGMW: What are the causes of stress or burnout for caregivers?
Boyko: There are many causes for caregiver stress and burnout:

Fear of the unknown – How and when will my loved one’s condition change? Will it change for better or for worse? Will I need to make an even bigger commitment than I’m currently making? Will I be able to do the things I enjoy, or will I have to put them on hold until my caregiving duties come to an end? Will there be any help or support available? How will I know how to make complex medical decisions for my loved one? The concerns are endless, and ignoring them can be detrimental to the health of the caregiver and the person being cared for.

Demands of caregiving – Caregivers handle many tasks for their loved ones, and they can become overwhelming: financial support; accompaniment to and navigation of medical appointments; administration of medications; serving as a health care advocate, transportation coordinator, chef, personal shopper; and more.

Social isolation – Caregivers often become isolated as a result of their caregiving duties. Their days begin and end with their loved one, so they don’t have as much time to spend with friends or other family members. As a result, feelings of isolation can become overwhelming and can spark negative emotions.

Financial uncertainty – The financial aspect of caregiving can’t – and shouldn’t – be overlooked. No matter what your financial situation, caregiving is costly. According to the AARP Public Policy Institute’s report, Valuing the Invaluable: 2015 Update, “The total estimated economic value of this uncompensated care provided by the nation’s family caregivers surpassed total Medicaid spending ($449 billion), and nearly equaled the annual sales ($469 billion) of the four largest U.S. tech companies combined (Apple, Hewlett Packard, IBM, and Microsoft) in 2013.”

Some of the factors that contribute to the high cost of caregiving include time off from a full-time job without pay and potential loss of benefits; out-of-pocket medical and long-term care expenses; home adaptations; and more.

CGMW: What should caregivers do when they are feeling stressed or fear becoming burnt out? Are there some effective strategies you can recommend to caregivers to deal with and manage stress?
Boyko: There are so many wonderful and varied ways to reduce stress. Here are a few: do some gardening, go for a walk, catch a movie or read a book, practice yoga and/or deep breathing, keep a journal.

Of course, asking for help is imperative. Caregivers need – and deserve – respite. They need time to attend to their own lives and address their own needs. Whether the help is from a family member, a close friend or a professional caregiver, asking for help is critical for caregivers to support their own well-being. Caregiver support groups can be very helpful, too, as they bring together people in similar situations and can provide a forum for support, engagement, respite, resources and more.

CGMW: Caring for someone with Alzheimer`ss or another dementia can be the most demanding caregiving role. Are there additional tips or strategies for caregivers in that situation?
Boyko: Due to the ever-changing nature of a dementia patient’s behaviors, a caregiver also will experience emotional ups and downs. Some behaviors of a patient with memory impairment include aggression, wandering, confusion and agitation, to name a few. Many of these behaviors can create even deeper caregiver stress because they are unpredictable.

The Alzheimer’s Association provides five tips for caring for a loved one who has Alzheimer’s or dementia:
     1.  “Try not to take behaviors personally.
2.  Remain patient and calm.
3.  Explore pain as a trigger.
4.  Don’t argue or try to convince.
5.  Accept behaviors as a reality of the disease and try to work through it.”

See the Alzheimer’s and Dementia Caregiver Center on the Alzheimer’s Association website to learn more about caring at every stage of a loved one’s illness.

CGMW: How can stress affect a caregiver’s health and well-being?
Boyko: Stress can weaken one’s immune system, cause significant weight gain or loss and can increase one’s risk of developing a chronic condition like hypertension (high blood pressure), diabetes or heart disease.

In fact, the National Center of Caregiving’s Family Caregiver Alliance says that “evidence shows that most caregivers are ill-prepared for their role and provide care with little or no support, yet more than one-third of caregivers continue to provide intense care to others while suffering from poor health themselves. Studies have shown that an influential factor in a caregiver’s decision to place an impaired relative in a long-term care facility is the family caregiver’s own physical health.” If you are caring for a loved one in her home or in yours, placing a loved one in a facility may not be a viable option – financially or otherwise.

The Family Caregiver Alliance also says that between 40 and 70 percent of caregivers have symptoms of depression, and “approximately one quarter to one half of these caregivers [meet] the diagnostic criteria for major depression.” Additionally, depressed caregivers are more likely to have coexisting anxiety disorders, substance abuse or dependence, and chronic disease. Depression is also one of the most common conditions associated with suicide attempts.”

CGMW: How can a caregiver’s stress affect the person they’re caring for as well as themselves?
 Many of the conditions and signs of caregiver stress we addressed earlier can have a negative impact on the person being cared for. When a caregiver falls ill, doesn’t eat well or sleep enough, for example, her energy levels decrease, thereby affecting her capacity to properly and safely care for her loved one.

Caregiver stress is real. And it can be detrimental to the caregiver’s health as well as to that of the person under care. Take the caregiver stress test at Caring.com. If you are stressed or heading for caregiver burnout, call a loved one for help and contact your local Council on Aging or senior center to ask what resources they have available to help you manage your stress.

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