Case- Sarah, a 93-year-old grandmother, lives alone, in Orlando Florida. She has congestive heart failure, diabetes and Parkinson’s disease and mild memory loss. Her two children live In New York and Florida. Her daughter, who lives close by, is the primary caregiver. Both children work and have their own families. Over the past year, especially with Covid, her children recognize that their mother requires more care.
Currently, there are 65.7 million Americans who are considered caregivers. 31% of all households are caregivers for ill or disabled relatives. 53 – 68% are female. Females spend 21.9 hours/week, while men spend 17.4 hours/week. 65% of recipients Receiving the care are female. 15% of caregivers give care long distance.
Who is a family caregiver? It is an adult family member, who is a parent, adult child, spouse, friend or relative. Someone who is experiencing symptoms before or at the time of diagnosis, as well as their caregiver, may be overwhelmed, confused, angry, hopeless, emotionally drained and worried about finances and changes in lifestyle. Changes in roles within the family occur in the caregiving relationship.
Questions about their medical condition.
- What is the disorder and diagnosis?
- How will it affect my life, work and family?
- What are the possible treatments?
- Is the condition permanent, progressive or reversible?
- Will the condition shorten my life?
Caregiver Responsibilities
These include arranging all appointments, transportation, household duties of cooking, cleaning, laundry, and finance management.
Caregiver Burden
Training and education about the illness and safety issues, such as giving up driving, and changes in independent activities of daily living. Prevent further injuries in the caregiver and the care recipient. The caregiver must acknowledge grief, sadness, anger, frustration, shock, stress, denial, fear, loneliness and isolation, depression and anxiety, guilt and inadequacy. The longer the time the caregiver works, the greater the depression. Caregivers must reach out to resources, such as non-profits, apps, assisted housing, government benefits, respite care, legal aid. Other stresses are the need of the caregiver to balance his/her work and personal and family life with caregiving. The caregiver and care recipient may seek strength and support from their clergy and faith-based institution.
And understand the purpose of faith to the care recipient.
Caregiver support groups: identify the needs and issues facing them, mutual support with others in the same situation, provide the resources to meet the individual needs, and identify who is on the team in terms of family members and outside resources.
How does the caregiver communicate with the family member receiving care? He/she can participate and listen, acknowledge their accomplishments and be supportive and collaborative. Also, they can enjoy time together and respect autonomy and independence in decision-making. With regard to other family members, the caregiver can delegate responsibilities and set boundaries for short and long term tasks and goals.
Long Distance Caregiving
There are special challenges when faced with long range caregiving. Some options are to move the care recipient closer to your home, more frequent visits taking into account your own work -life balance, setting limits, creating a network to address emergencies. Have an up to date account of the recipient’s doctors, neighbors, friends and all medical papers and medication list.
Caregiving can be meaningful, purposeful and rewarding. It can demonstrate a selfless relationship of love and devotion. However, it may also demand the need to know when to ask for help. The Misheberakh Prayer invites our responsibility to support those who are ill and their caregivers.
You can use this article and the following questions for a Hearing Men’s Voices Program :
HMV Questions:
- How can family and friends be involved in the support network?
- How do you manage long distance caregiving?
- How do you manage conflict when it arises?
- How do you prepare for bereavement?
- What are your boundaries with work/life balance?
- How do you engage in self care?
- When should you take respite care?
- When do you reach out to the clergy?
Steven Mandel MD - Adjunct Clinical Professor of Medicine, New York Medical College
Heidi Mandel PhD DPM LMSW - Medical Social Work Consultant