A Family Caregiver's Introduction to Caregiving

Who are caregivers?

Do you go grocery shopping for your mom because she can’t get around like she used to? Do you help your elderly neighbor around the house? Do you run errands for your grandfather? Maybe you do even more for someone you love like helping them to bathe, get dressed or even help them get in and out of bed. Are you the one who makes sure they take their medication and get to their doctor appointments? Do you find yourself going along to those appointments, and speaking with the doctor? If so, you are a family caregiver.

Many times, people like you don’t consider themselves family caregivers.  You’re just doing what you need to do to help your husband, mother, sister, friend, or neighbor.

The term ‘family caregiver’ means an unpaid family member, foster parent, or other unpaid adults who provides in-home monitoring, management, supervision, or treatment of a child or adult with a special need, such as a disease, disability, or the frailties of old age. But in reality “family caregiver” means so much more.

Four Kinds of Caregivers

Former First Lady Roslyn Carter famously said that there are four kinds of people - those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.

Here at Caregiver Action Network, we say there are four kinds of family caregivers – those who are new to caregiving, those who have been doing it a long time, those who are caring from far away, and those who are working and are also family caregivers.

New Caregiver: It might have been a gradual process. You hadn’t seen your mom in a while and when you did, noticed she seems to be getting confused. Or it might have been something sudden. Your grandma lives alone and had a stroke. No matter how it started, you are now a family caregiver. CAN is here to help you navigate your new role. Being a family caregiver can be overwhelming and you are bound to have questions. What should go into my loved one’s patient file? What do I need to do before a  visit to the doctor? Is there help out there for me? Caregiver Action Network has the information and tools you need to manage your new caregiving responsibilities.

Long-Distance Caregiver: Most people want to stay in their homes as they age while their adult children may live elsewhere. Being a family caregiver from a distance has its own set of challenges. The caregiver's role is less "hands-on" and more focused on gathering information and coordinating care and services for your loved one. Caregiver Action Network has information for you on topics such as learning to think like a care manager and coordinating care with other family members.

Caregiver while working: Being a family caregiver is hard enough without having to also juggle your caregiving responsibilities with the responsibilities of your job. Some workplaces are more flexible and understanding of your caregiving duties. Caregiver Action Network can help you handle these two important roles with information on things like the importance of asking for help and managing the cost of care.

Long-time caregiver: When caregiving has gone on for several years, it brings its own set of challenges and concerns. You may feel stressed or depressed. Maybe you just need a break now and then. Your loved one’s condition may have progressed so that it’s too much for you, but you want to keep them at home.

What do family caregivers do?

The duties of a family caregiver vary greatly depending on the level of care needed by their loved one. If your loved one is aging, but otherwise in good health, they might need help with daily tasks, so you run errands, help around the house, and provide companionship. If your loved one needs more assistance, you may need to help them with activities of daily living (ADLs). These activities might include things like getting out of bed, bathing, getting dressed, toileting, getting around, and eating.

In some cases, family caregivers are called on to take a more active role in managing their loved one’s care. You may need to monitor and administer medications, communicate with their doctors, advocate for your loved one, and deal with insurance companies. More than half of family caregivers (58%) perform more complex nursing care tasks such as giving injections, tube feeding, wound care, catheter care, and monitoring vital signs.7 

Another aspect of caregiving is making sure that official documents are in order. Advance directives are written instructions for your loved one’s medical care if they are unable to communicate their wishes. One example is a living will that gives details of your loved one wishes for their emergency or end-of-life care. This may include a Do Not Resuscitate (DNR) order that specifies that your loved one does not want a life-prolonging treatment such as intubation or ventilator in the case of cardiac or respiratory arrest.

In powers of attorney documents, your loved one can give their caregiver or someone else that they trust the ability to make decisions on their behalf. A health care power of attorney—or health care proxy--allows a designated person to make medical decisions on their behalf—including ensuring that advance directives are followed. Financial power of attorney gives the designated person the authority to make legal or financial decisions on behalf of your loved one. This included accessing your accounts to pay bills and health care costs.

What are some pain points of caregiving?

Caregiving often increases in intensity over time. The average duration of caregiving is 4.5 years, and 29% of caregivers have been in this role for five years or more.8 Being a caregiver can be stressful. You may feel as though there isn’t enough time in the day to do everything that you need to do or that whatever you do, it’s not enough. Often, this stress can make you feel depressed, anxious about whether you will be able to handle the responsibilities of caregiving, fearful about the outcome of your loved one’s condition, guilty that you’re not doing more, or even angry or resentful. Caregiving can lead to feelings of isolation when you no longer have time to spend with friends and other family members or participate in outside activities. Caregiver stress can cause physical symptoms trouble sleeping, headaches, muscle tension, chest pain, fatigue, and leave you more vulnerable to infection.  It can even lead to abuse of alcohol and other substances.

Caregiving can also lead to financial strain and stress. Caring for a loved one can be more than a full-time job—which might make it difficult to work full-time or at all. At some point, your loved one may need more care than you can provide, requiring that you move them into a facility or bring in paid home care. There are out-of-pocket costs for things like medical premiums, co-pays, assistive devices, and supportive services.

Caregiving Statistics in the U.S.

If you are a family caregiver, you are not alone. In fact, there are currently more than 90 million Americans just like you who are caring for loved ones of all ages with chronic conditions, disabilities, disease, or the frailties of old age. For more Caregiver Statistics, click here.

• Most caregivers are employed. Among caregivers aged 50-64 years old, an estimated 60% are working full or part-time.1
• While the vast majority of caregivers (87%) are caring for a family member, the family relationship varies by generation:2
  • Generation X (42%) and Baby Boomers (42%) are more likely to be caring for a parent, compared to Millennials (24%) and Silents (8%);
  • Silents (57%) are more likely than Baby Boomers (24%), Millennials (12%) and Generation X (11%) to be caring for a spouse or partner;
  • Millennials (14%) and Generation X (12%) are more likely than Silents (8%) and Baby Boomers (7%) to be caring for a child; and
  • Millennials (21%) are more likely to be caring for a grandparent compared to Generation X (9%), Baby Boomers (1%), and Silents (none).

• There are approximately 39.8 million caregivers providing care to adults (aged 18+) with a disability or illness or 16.6% of Americans.3
• There are about 15.7 million adult family caregivers who are caring for someone who has Alzheimer’s disease or another form of dementia.4
• In California, a statewide study of caregivers of adults with cognitive disorders such as Alzheimer’s showed that caregivers provided an average of 84 hours of care per week, the equivalent of more than two full-time jobs.5 Older caregivers often spend the most hours providing care.6 

Resources for Family Caregivers

Care Chats

CAN hosts several online chat groups—some devoted to specific diseases and some to specific aspects of caregiving:

• Alzheimer’s Disease
• Huntington’s Disease
• Parkinson’s Disease
• COPD
• Loved Ones with Mental Health Issues
• Dealing with Medical Professionals
• New Caregivers
• Life After Caregiving
• Dealing with Caregiver Depression
• Working Through Your Frustration and Isolation
• Technical and Practical Advice for Caregivers

Caregiver Help Desk

CAN has a free Caregiver Help Desk to provide support to family caregivers across the country. The Help Desk is staffed by caregiving experts to help you find the information you need to navigate your caregiving challenges and support you on your caregiving journey. You can reach the Caregiver Help Desk by phone, e-mail, or live chat Monday through Friday, from 8:00 AM – 7:00 PM ET. The Help Desk can be reached by phone at 855-227-3640 or by chat at https://www.caregiveraction.org/helpdesk.

CAN’s Top 10 Tips for Family Caregivers:

1. Seek support from other caregivers. You are not alone!
2. Take care of your own health so that you can be strong enough to take care of your loved one.
3. Accept offers of help and suggest specific things people can do to help you.
4. Learn how to communicate effectively with doctors.
5. Caregiving is hard work so take respite breaks often.
6. Watch out for signs of depression and don't delay getting professional help when you need it.
7. Be open to new technologies that can help you care for your loved one.
8. Organize medical information so it's up to date and easy to find.
9. Make sure legal documents are in order.
10. Give yourself credit for doing the best you can in one of the toughest jobs there is!

References

1 AARP. Beyond 50.03: A Report to the Nation on Independent Living and Disability. Washington DC: AARP, 2003.

2 The Many Faces of Caregivers: A Close-Up Look at Caregiving and Its Impacts Transamerica Institute’s Inaugural Study of Caregivers September 2017. https://www.transamericainstitute.org/docs/default-source/caregivers-research/the-many-faces-of-caregivers-research-report-2017.pdf

3 [Coughlin, J. (2010). Estimating the Impact of Caregiving and Employment on Well-Being: Outcomes & Insights in Health Management.]

4 Alzheimer’s Association. (2015). 2015 Alzheimer’s Disease Facts and Figures.]

5 Family Caregiver Alliance, “Caregivers at Risk,” 2004/05. 6 Partnership for Solutions. “Chronic conditions: Making the case for ongoing care.” Baltimore: Johns Hopkins University, 2002.

7 AgingCare: https://www.agingcare.com/articles/who-are-family-caregivers-459287.htm

8 AgingCare: https://www.agingcare.com/articles/who-are-family-caregivers-459287.htm