September 21, 2020
One of the most important jobs we will ever have is the job of caregiver to someone with a serious, critical or terminal illness. Whether you are a paid caregiver or a caregiver that is paid in the currency of duty and love, it can be an exhausting and emotionally draining commitment. If you or a family member is currently acting as caregiver to a loved one, it is important to know that you are not alone.
Some Basic Facts About Caregivers
We should talk about the two basic types of caregiving – the informal caregiving done by family members and friends, and formal caregiving, that is paid, either at home or in a care setting such as residential or long term care communities.
As many people learn, even when formal caregiving is part of the mix, friends and family still do a substantial amount of caregiving as well. A recent article about the impact of caregiving during the pandemic states, “The absence of visiting family members, who can provide social support and help with hands-on care during normal times, adds to the burden [facing formal caregivers].”
Whether you are a formal or informal caregiver, you should know the challenges are shared with a lot of people- here are some facts courtesy of The Family Caregiver Alliance:
- Approximately 43.5 million caregivers have provided unpaid care to an adult or child in the last 12 months.
- About 34.2 million Americans have provided unpaid care to an adult age 50 or older in the last 12 months.
- The majority of caregivers (82%) care for one other adult, while 15% care for 2 adults, and 3% for 3 or more adults.
- Approximately 39.8 million caregivers provide care to adults (aged 18+) with a disability or illness or 16.6% of Americans.
- About 15.7 million adult family caregivers care for someone who has Alzheimer’s disease or other dementia.
- 65% of care recipients are female, with an average age of 69.4. The younger the care recipient, the more likely the recipient is to be male. 45% of recipients aged 18-45 are male, while 33% of recipients aged 50 or higher are male.
- Upwards of 75% of all caregivers are female, and may spend as much as 50% more time providing care than males.
- Male caregivers are less likely to provide personal care and 40% of male caregivers use paid assistance for a loved one’s personal care.
What Do Caregivers Do?
Caregiving seems like a broad area – what tasks are caregivers providing? Almost all (96%) of family caregivers help with activities of daily living including personal hygiene, dressing, taking medications, shopping, transportation and more. Help also includes changing position in and out of bed and chairs, often referred to as transitions.
About half (46%) of family caregivers also help perform medical and nursing tasks as well, which can include changing bandages, monitoring medications, helping with therapy and more.
How do Caregivers feel about their Caregiving?
Over half (57%) of caregivers report that they do not have a choice about performing clinical tasks, and that this lack of choice is self-imposed.
- 43% feel that these tasks are their personal responsibility because no one else can do it or because insurance will not pay for a professional caregiver.
- 12% report that they are pressured to perform these tasks by the care receiver.
- 8% report that they are pressured to perform these tasks by another family member.
Caregivers report holding significant decision-making authority regarding the following:
- Monitoring of the care recipient’s condition and adjusting care (66%);
- Communicating with healthcare professionals on behalf of the care recipient (63%);
- Acting as an advocate for the care recipient with care providers, community services, or government agencies (50%).
In a nutshell, caregivers not only provide care and comfort to their loved ones, but they serve as an important medical and socio-economic function as well. Statistics aside, the duties of a caregiver are important and far reaching, providing personal care, medical care and most importantly, emotional support to the patient/person needing care. But the question remains, in the midst of a seemingly endless number of tasks caregivers are asked to provide – What do caregivers do when the burden of providing care feels overwhelming?
Caregiver burnout is real. It is a state of physical, emotional and mental exhaustion. It may be accompanied by a change in attitude, from positive and caring to negative and unconcerned. Burnout can occur when caregivers don’t get the help they need, or if they try to do more than they are able, physically or financially.
Many caregivers also feel guilty if they spend time on themselves rather than on their ill or elderly loved ones. Caregivers who are “burned out” may experience fatigue, stress, anxiety and depression.
Caregiving is one of the most stressful jobs a person can have. The personal nature of caring for family members coupled with feelings of loss and helplessness frequently prevent us from seeing the toll the intense role of caregiving takes on our psyche and physical health.
Luckily, there are caregiver support groups and experts writing and speaking about managing caregiver stress. One such expert is Maggie Sullivan, Caregiving Support Facilitator, with the Alzheimer’s Association. Ms. Sullivan has been writing a blog directly addressing the topic of helping caregivers cope and manage their own feelings of stress and burnout. You can read her blog at the Silver Century Foundation by clicking here.
Maggie’s expertise comes from personal knowledge, being a family caregiver herself. Maggie took care of her mother for eight years as her Mom wrestled with the debilitating symptoms of Alzheimer’s Disease. Maggie has been writing her blog and helping other people learn how to cope and manage their own caregiving challenges for the past 23 years.
Maggie Sullivan Comes to Chandler Hall via Zoom!
Chandler Hall is excited to welcome Maggie Sullivan on September 26th from 10:30 – 11:30 AM as she shares her many years of accumulated knowledge and insight on “How to cope with Caregiving”. You can sign up for the presentation by clicking here.
In her talk, Maggie explores the impact of such topics as “role confusion”, when the child becomes the caretaker or takes on the parental role, and how to set realistic expectations for yourself and your abilities. Maggie will also explore recognizing the signs of “burnout” and how to make time for yourself in the midst of overwhelming demands on your time and emotions.
Be sure to RSVP for the free virtual event. You can even ask Maggie your questions about caretaking. Be sure to sign up for future events as well, and let Chandler Hall help you navigate the complex care journey, together.
Find out more about Personal Care
at Chandler Hall
At Chandler Hall, we have a variety of living options for those needing care, ranging from our Residential Living apartments, where a Homemaker can help residents with light housekeeping, to our Personal Care residences, for those needing more assistance in day to day care, including medication management and other activities of daily living. Find out more about our personal care residences by clicking the button below.