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Where can I find caregiver support?

Linda Ercoli, PhD
Psychology
Every caregiver needs support, but not everybody needs the same kind of support. Nevertheless, getting support is essential because it reduces caregiver burden and improves quality of life.

There are many ways to get support. One way would be to have professionals who can work with the person you are caring for do home visits. It could be a physical therapist or an occupational therapist. You yourself may need professional help like psychotherapy.

Support groups are invaluable. There are in-person, telephone and online support groups. Moreover, you can get support from friends. You might also find support through your church or temple.

Research shows that combining different strategies is most helpful. Don't feel like you can do only one thing. Do whatever works for you. Talk to a friend, read a book or research online for helpful videos. You can work out your own program for getting support.
If you are tackling the caregiving role for the first time, you may be surprised to learn that a great deal of help is available. A good starting point is the Eldercare Locator, a service of the Administration on Aging at the U.S. Department of Health and Human Services. The Eldercare Locator can connect you with a broad range of services in your community, such as transportation, home-delivered meals, legal services, social opportunities and respite care. All you need is the zip code of the person needing care.

Another source of referrals is the social worker or geriatric care manager employed by the aging services, hospital, nursing home or hospice organization involved in the caregiving. For private help, contact the National Association of Professional Geriatric Care Managers.

It's also important to communicate with the appropriate healthcare professionals. Be sure to contact the local chapter of an advocacy group representing people who have the condition you're dealing with—for example, the Alzheimer's Association, the Multiple Sclerosis Association of America, the American Cancer Society, the American Heart Association or other advocacy groups.

There are many excellent legal, financial and geriatric care management services available free online. The more educated you are, the easier your job will be.

States are starting to provide more caregiving services and support. They receive funding for these services from the National Family Caregiver Support Program. Contact your state Division of Aging office, your area Agency on Aging office or your state Elder Affairs office for more information.

As you gather information and assume more responsibility, try to include your family member or friend in the decision-making process whenever possible. Does your mother want to remain in her home as long as possible? If relocation is necessary, does she have a preference as to where. or with whom, to live? You'll need to factor in your relative's condition. Is she in a wheelchair? Does she require a walker? The choice of residence—your home, her home, an assisted living facility, a skilled nursing or rehabilitation facility—may be dictated by such mobility concerns.
Alexis Abramson
Caregiving

While caring for a mature adult may come naturally to some, it can still take a toll and may eventually lead to caregiver burnout. Caregiver burnout is a state of physical, emotional and mental exhaustion that can be accompanied by a change in attitude -from positive and caring to negative and unconcerned. Here are some signs of caregiver burnout:

  • Being on the verge of tears or crying a lot
  • Feeling helpless or hopeless
  • Overreacting to minor nuisances
  • Feeling constantly exhausted
  • Losing interest in work
  • Withdrawing from social contacts
  • Increasing use of alcohol or stimulants
  • Decrease in productivity at work
  • Nervous habits such as chain smoking
  • Change in eating and/or sleeping patterns
  • Use of medications for sleeplessness, anxiety, depression
  • Inability to relax and scattered thinking
  • Frequently being short-tempered and feeling resentful

If you want to prevent burnout, you might consider turning to the following resources for help:

  • Aging Agencies - Local Area Agencies on Aging and your local AARP chapters provide services available in your area such as adult day care services, caregiver support groups, and respite care. (n4a.org)
  • Home Health Services - Organizations providing home health aides and nurses for short-term care if your loved one is acutely ill. (homeinstead.com)
  • Adult Day Care/Assisted Living/Nursing Care - Programs serving as a place for seniors to socialize, engage in a variety of activities and, in some cases, receive needed medical care & other services. (jcca.org & seniorbridge.com)
  • Private Case Managers - These are professionals who specialize in assessing current needs and coordinating care and services. (cmsa.org)
  • Caregiver Support Services – Organizations offering support groups and other programs that can help caregivers recharge their batteries, meet others coping with similar issues, find more information & locate additional resources. (www.nfcacares.org)

Below are a few additional tips to help prevent caregiver burnout:

  • Establish priorities
  • Maintain your friendships
  • Take time to exercise
  • Share the caregiving role with family and friends
  • Keep your medical appointments
  • Maintain a healthy diet
  • Talk to a professional
  • Take a break from caregiving – respite is crucial
  • Stay involved in hobbies
  • Be proactive and plan ahead

PLS. NOTE:  This answer is Dr. Abramson's subjective views and her intention is to do no harm. The content of this answer should never be taken as substitute for medical advice.

In many communities, a range of services is available to assist and support caregivers. The following list, organized by type of resource, while not exhaustive, provides a starting point for searching for resources in your area.

Caregiver resources and support vary by country. Many new laws have been passed providing financial support and respite care, training, and education. Contact your local, regional, state or national government health or aging-related agencies for information on these supports.
  • Counseling: counseling for caregivers by healthcare professionals
  • Government financial support: income compensation (welfare or salary), compensation for expenditures, time compensation, paid respite, mandatory days off of care
  • Information, advice and emotional support: fact sheets, brochures and support groups by non-profits, non-government organizations (NGO), libraries, universities and healthcare professionals
  • Other support: caregiver health check-ups by NGOs/ non-profits
  • Peer support: online or group support by NGOs/ non-profits
  • Respite care programs: voluntary home-care, short-term day care, volunteer care by NGOs/ non-profits
  • Recognition and legal rights: formal government laws to recognize carers/caregiver by federal, regional or state governments
  • Training/education programs: provide "caring for the carer/caregiver" programs by NGOs/ non-profits

There are two national organizations that I have found to be particularly useful for supporting family caregivers: (a) the National Family Caregiver's Association (NFCA) and (b) the Alzheimer’s Foundation of America (AFA).

A description of each is provided below:

The National Family Caregiver's Association is a particularly useful resource because the organization’s mission is to support caregivers caring for loved ones of all types regardless of age or disability. In addition to online support chat group, NFCA has state representatives (in almost every state) who volunteer to act as a resource for caregivers in their communities.

The Alzheimer's Foundation of America is another valuable resource that focuses on supporting caregivers. AFA hosts a national monthly call in support group for caregivers caring for loved ones with Alzheimer's disease. AFA also has member organizations many of whom provide direct care and support for caregivers.

As a caregiver it can be difficult to know where to turn for support. NFCA and AFA are valuable resources with individuals ready and willing to assist you in your care giving.  

Shelley Webb
Nursing

If you are caregiving for an aging parent or loved one, there are several options available to you for caregiver support.

The first one I always recommend is the support groups offered by the Alzheimer's Association.  Your loved one needn't have Alzheimer's Disease nor even dementia i norder for you to participate.  But the participants of this group KNOW their resources very well, have learned what works and what doesn't when it comes to daily care and understand the emotional and physical drains of caregiving.  They can be a huge support for you as a caregiver.

The Alzheimer's Association is also beginning to offer a 6 week course called Powerful Tools for Caregivers which covers self-care, ways to communicate with both your loved one and other family members who be difficult, and action plans.

Other sources of caregiving support can be found by searching your community for support groups in the specific disease entity that your loved one has - for example: kidney failure, cancer, cardiac disease, etc.

Home Health agencies offer respite care (at a cost) so that you can take some time for yourself.  Make self-care a priority because just like a car, you cannot run on an empty tank.

Keep a pad of paper by your phone and write down things that friends and family can do to be of help.  When they call and ask if there is anything they can do for you, look at your list and ASK.  Learn to ask for help; asking for help is not a sign of weakness.

 

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Important: This content reflects information from various individuals and organizations and may offer alternative or opposing points of view. It should not be used for medical advice, diagnosis or treatment. As always, you should consult with your healthcare provider about your specific health needs.