Caregiving Roles for the Entire Family
The term “caregiver” can take on many contexts depending on your loved one’s abilities, health, living arrangement and overall well-being. The term also means different things to different people. Some find their identity in being a “caregiver” and are empowered to embrace their role, while others are so overwhelmed with the sweeping responsibility of caring for a loved one that they experience caregiver fatigue.
Caregiving requires a profound dedication and personal commitment, and the reality is, it is a season of life that can be enormously rewarding, yet emotionally and physically exhausting.
The Cost of Caregiving
According to the Family Caregiver Alliance, there are approximately 43.5 million caregivers providing unpaid care to an adult or child every year, with most (85%) providing care to a relative or loved one. The stats reveal that on average, family caregivers spend:
- 24.4 hours per week providing care. Nearly 1 in 4 caregivers spends 41 hours or more per week providing care.
- 13 days per month on tasks such as food preparation, giving medication, housekeeping, laundry, shopping and transportation.
- 6 days per month on ADL’s, like bathing, dressing, feeding, grooming, toileting and walking.
- 13 hours per month researching care services or information on disease, coordinating physician visits or managing financial matters.
Research suggests that caregiving often has negative effects on a person’s health and well-being, and that nearly half of caregivers (40%) report feeling that they are in a “high-burden” situation. Despite these facts, many family caregivers do not “practice preventive healthcare and self-care behavior,” reporting:
- Failure to exercise
- Failure to stay in bed when ill
- Poor eating habits
- Postponement of or failure to make medical appointments for themselves
- Sleep deprivation
Family caregivers are also at increased risk for depression and excessive use of alcohol, tobacco and other drugs. The evidence is clear – for the health of the whole family, caregiving responsibilities should be shared.
Caregiving Roles for the Entire Family
With many different personalities and perspectives – and under stressful circumstances – how do family members share the responsibilities of caregiving? Luckily, there are fantastic resources available to help families align themselves and come together to support their loved one, and each other.
Share the Care™ (STC) is one such resource. This highly regarded guidebook comes with printable worksheets and can be used by caregivers and families as a “loving, pragmatic approach to caregiving that can succeed no matter what the challenge.”
The idea behind the STC model is to “organize a circle of care” for a loved one in need, relieve the burden and stress of the primary caregiver, and help to involve family and friends in the care process.
Roles and responsibilities can be divvied up to all members of the family (including children, grandchildren, siblings, spouses, etc.) and assigned to provide the following caregiving tasks:
- Arrange medical appointments, drive to the doctor, sit in during appointments, monitor medications.
- Be a companion – the perfect role for an older child to assist mom in caring for grandma!
- Buy groceries, clean, cook, do laundry, provide transportation – many friends and neighbors want to help relieve the load of caregivers, but they are not sure how. Assigning these tasks can be a great help in ticking things off the over-growing to do list.
- Handle crises and arrange for assistance.
- Handle finances and other legal matters.
- Help the care receiver get dressed, take medicine, take a shower, etc.
- Talk with care managers, doctors, nurses and others to understand what needs to be done.
- Transfer someone out of bed/chair, help with physical therapy, perform medical interventions — injections, feeding tubes, wound treatment.
Ways to Share the Care
Sharing caregiving responsibilities with family members can be a difficult road to navigate. How do you get everyone on the same page?
1. Create a Plan
The AARP has published “A Caregiver’s Guide to Creating a Respite Care Plan,” which offers a step-by-step plan to assess your caregiving needs and get help from family and friends. The first step is to understand your needs, and the needs of your loved on. To do this, AARP suggests asking yourself these two questions:
- What do I need?
Three hours off, twice a week? Twenty-four hours away from the house? A regular caregiver’s day (or night) out with your spouse or friends? A combination of the above?
- What does my loved one need?
Companionship? Meals? Light housekeeping? Personal care? List every job, large and small.
By understanding your needs and the needs of your loved one, you can create a game plan that involves other members of your family and allows each member to contribute without one person bearing the burden of all caregiving responsibilities.
2. Hold a Family Meeting
The Family Caregiver Alliances suggests holding a family meeting to encourage family members to get on the same page and work cooperatively. After all, the more people participating in care, “the less alone a caregiver feels in his/her role,” and the more supported your loved one receiving care feels.
When planning a family meeting, communication is key and preparing an agenda will be helpful to keep everyone in the know. Allow each member to add topics of discussion or concerns to the agenda in advance. Agenda topics and tips may include:
- An email or telephone tree for regular updates.
- Daily caregiving needs – a list of tasks that need doing.
- How much time does each family member have to visit?
- Other ways each person can help? What other help might be available?
- Problem solving – issues that need a solution and possible ideas.
- Sharing of feelings about the illness/caregiving.
- The latest report from the physician.
- What does the person who is ill want and need?
- What sort of support does the primary caregiver need?
- What support role does each person want to play?
- Who will make decisions (e.g., financial, medical, hiring a caregiver, etc.) and how will they be made?
Remember to circulate minutes from the meeting that capture the decisions made.
A successful family meeting needs compromise to be successful. Also, try to accept that not all issues will be resolved in one meeting. The Family Caregiver Alliance suggests trying to work toward respecting each others’ opinions and “consensus building.”
Providing care for a loved one can be an all-encompassing responsibility for a caregiver; however, by involving others and assigning caregiver roles for the entire family, you can relieve many of the stresses associated with caregiving.
How are caregiving roles defined in your family? We’d like to hear your stories in the comments below.
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