Sooner or later, many adults are faced with the complex and overwhelming responsibility of caring for an elderly parent, spouse, or other close relative or friend. Unfortunately, most people are unaware of the magnitude of this challenge until there is a medical or other kind of crisis and they must step in as caregivers and take charge of the situation.
Suddenly, one is called upon to become knowledgeable about a host of things he or she may not have had reason to think about before. Tasks include assessing the short- and long-term needs of the person needing care, locating homecare resources and services, employing homecare attendants, assuming management of the patient’s financial affairs, coordinating needed medical care, processing and following up with health insurance claims, consulting with eldercare attorneys to protect assets, and drawing up needed legal documents such as wills, powers of attorney and health care directives. And the list goes on…
However, caregivers are often not given the help, the attention, the support and services that they sorely need. Medical professionals, understandably, are often focused primarily on the “patient,” to the exclusion of those others, the family members, whose lives are also altered by the new and ongoing requirements of the person who is ill. It is not uncommon for caregivers to feel that they should be selfless and stoical, that their own needs don’t count, that they cannot or should not express themselves or ask for help, that they should be solely focused on the well-being of the patient, and not at all about themselves.
Burdened by the onslaught of caregiving responsibilities, in addition to those of pre-existing career and family demands, the emotional and physical toll may become significant. It is not surprising that most family caregivers become very stressed, eventually experiencing a form of burnout. This may lead to exhaustion, feelings of resentment and guilt, depression, and general deterioration of psychological and medical well-being.
Many caregivers feel isolated and lonely, and may hesitate to ask for help and to reach out to others for social contact. Their hesitancy to do so may be a function of their innate shyness, but it may also be based on experiences in which relatives and friends have become “unavailable” or unwilling to expose themselves to the grim realities of a caregiver’s situation.
In addition, interpersonal relationships often become strained, in that the caregiving adult often feels torn between the conflicting needs of the patient, the spouse or partner, children, friends, employers, colleagues, to say nothing of one’s own requirements for self-care and essential gratifications.
Beyond all of these challenges, many people face new levels of financial strain, along with growing anxiety about how they will be able to afford the exorbitant costs of home and medical care.
Given the unavoidable strain of taking care of a person who is either physically ill or suffering dementia, it is important to consider ways to ease the burden of the caregiver.
If you are a friend or relative of a caregiver, and want to be helpful, try encouraging him or her to talk about the concerns and stress they are experiencing Be prepared to really listen. Don’t be judgmental of their feelings and be receptive to learning about aspects of the caregiving that they might not otherwise mention, for fear of alienating the listener.
Offer respite. Even if you can only spare a couple of hours a week, take over for a while so that caregivers can get out and take time for themselves. Be sure to ask them to show you how to do necessary tasks, such as helping someone to go to the bathroom, or feeding someone who can’t feed themselves. Remind them to show you where emergency telephone numbers are listed, should a crisis arise on your watch.
Help out with everyday tasks whenever possible. If you come for a visit, bring some home-cooked food they can keep for later meals. Or offer to do a load of laundry, wash or dry dishes, pick up the kids from school, or get the groceries and dry cleaning.
You might consider helping caregivers keep up to date with medical research, especially if they are caring for someone with Alzheimer’s, Parkinson’s or another disease for which new treatments are being developed.
Also, if the elderly patient has dementia, you might help make the home safer by finding ways to stop the person from wandering outside, storing dangerous substances out of reach and removing or locking away items that could be dangerous in the hands of someone who undergoes episodes of aggression.
Finally, if you detect that caregivers are unduly stressed, frustrated or burned out, you might offer to help find community resources for them. These might include counseling or support groups for caregivers. For people who cannot easily travel or leave the home, there are also support groups conducted via conference telephone calls, or online. Organizations such as AARP, the Alzheimer’s Association, and the Parkinson’s Disease Foundation, the National Alliance for Caregiving, and the National Family Caregivers Association, among others, offer listings and links to caregiver support services.
And if you, yourself, are the caregiver, please reach out for help. Your needs matter! As always, the MAP office is available to help in any way we can. Call us if you have questions, need information, or want to talk about your situation.