Organizing for Family Caregivers
Constance Faith Shanti
Organizer to the Rescue
November is National Family Caregiver Month. According to The Department of Health and Human Services Administration on Aging, there are over 22.4 million family caregivers in the US. I am one of them. Did you know that family caregivers provide an estimated $254 billion in economic value each year in the services they freely provide?
Caregivers take on the day-to-day health care and management for a spouse, a parent, a disabled child, a sibling or other relative. Often the patient’s prognosis is terminal. In addition to health care and management, caregivers frequently need to manage the patient’s financial and legal affairs. When the diagnosis is dementia, such as Alzheimer’s, difficult patient behaviors add stress to the already overloaded caregiver. It’s not all negative. Caregivers report positive benefits of caregiving. Caregivers learn new skills, they often feel they are “paying back” a family member for the care and attention they received in years past, and frequently families are brought closer together during the caregiving experience. On the flip side, many caregivers sacrifice their own careers, their health, their financial stability, and their relationships in order to take care of the patient. And, sadly, it is not unusual for some family members turn a blind eye to relieving the caregiver of part of the burden.
Ideally, only very well organized folks would become family caregivers. However, caregivers’ organizing skills, like the general population, cover the full spectrum from “not organized at all” to “exceedingly well organized.” Typically, caregiving duties are begun with little or no advance notice, leaving the caregiver no time beforehand to get their own life in order.
Family caregivers have special organizing needs. Caregivers need extremely efficient filing and paper management systems. On behalf of the patient, they must deal with medical providers, governmental agencies, insurance providers, and financial and legal institutions. All records must be easy to locate. Incoming mail must be dealt with immediately since important deadlines could be missed that might jeopardize some aspect of the patient’s care. It sometimes seems that the caregiver’s experience is heavily comprised of filling out form after form.
Efficient time management is critical. Appointments must be made and kept, banking and shopping done, laundry and cleaning completed, meals cooked, and support groups attended--all while keeping the patient’s medical needs at the top of the list in priority. Working caregivers and remote caregivers face special challenges. Finding paid help in the home can present a solution, as well as its own set of issues and concerns.
If the patient and caregiver share the same home, the patient’s medical equipment often adds to the overall chaos: the equipment can be cumbersome, ugly, and take up much space. Sometimes a public area of the home, such as a living room, needs to be transitioned into space for the patient and his/her equipment, especially if stairs cannot be managed anymore. Sometimes home safety modifications must be made. Patient safety is enhanced by these changes, but the caregiver usually has to manage these modifications too, in addition to the other duties.
Medical crises are to be expected and long waits at emergency rooms or in hospital waiting rooms are part of the job. And, in the case of many elderly patients, caregivers take on the daunting task of researching nursing home facilities and handling the patient’s placement. Additionally, since most patients don’t have long term care insurance, caregivers must navigate the bureaucratic maze that will allow the patient to qualify for government assistance during nursing home tenancy.
There are many ways a Professional Organizer can help a caregiver be more successful at managing the caregiving job. Streamlined paper management systems, safety-oriented space planning, and time management skills coaching will help relieve caregiver stress and will ultimately result in better care for the patient.
In addition to general organizing, Connie provides special organizing help for family caregivers and seniors. Her business, Organizer to the Rescue, is located in Dublin. Connie is the primary caregiver for her husband.
NOTE: Excellent information for family caregivers can be found at Family Caregiver Alliance's website at www.caregiver.org . Here you'll find all kinds of good information about certain medical conditions (Alzheimer's, Stroke, Parkinson's, and more). Other good general information relates to communication issues (family, medical personnel, etc,) and many other caregiver issues (placement, patient driving, handling difficult behaviors, legal issues, etc.)
© Copyright 2004 All Rights Reserved Constance Faith Shanti
© Organizer to the Rescue, 2003 All Rights Reserved Last Updated January 1, 2015