It has been estimated that up to two million frail, confused, elderly Americans are presently being cared for in 18,000 nursing homes across the US. While this may seem like a large number, in reality it represents only a small proportion of the aging population in need of care in the US. The vast majority of these elderly patients, many with dementia of varying degrees of severity and degeneration, are being cared for by their own adult children. Because this work tends to happen silently and invisibly ‘behind the scenes’ of working life, it has, until recently, received little social policy attention.
It is relatively easy to see this care giving as part of ordinary family life. The profile of ‘ordinary family life’, however, has changed much in the last few decades. Increasingly, family expenditure demands the incomes of two individuals; the traditional family structure of the homemaking mom and the breadwinning dad is less and less the norm, with both parents today more typically working long hours.
When an elderly, much loved parent becomes increasingly unable to care for themselves safely, a major source of severe stress beckons the adult son or daughter who takes on a care giving role. The stress has many determinants: the inevitable wear and tear of trying to juxtapose work and family commitments with travel to the elderly loved one on a regular, frequently daily, basis; the emotional strain of watching a loved relative become increasingly ill or confused with little prospect of improvement and every prospect of further decline and eventual death; the sometimes bewildering tasks of making sense of medical diagnoses and treatment and of finding additional sources of help. Add to this the guilt that caregivers frequently experience – either that they are not being good enough or (sometimes ‘and’) that partners and children are being deprived as a result of the extra commitments – and a potentially dangerous predicament begins to emerge.
More than 44 million adults – that’s 21% of the adult population – are presently acting as unpaid caregivers to elderly parents or other relatives, providing 80% of long-term care in the USA. This is a sizeable army of potentially highly stressed individuals, 61% of whom are women, often with children of their own and active working lives. Research has strongly suggested that care giving is associated with increased probabilities of various health problems. These include depression and anxiety disorders (ranging from feeling chronically sad, tired and worried to acute panic attacks), higher levels of stress-related blood cortisols, diminished immunity to colds and influenza, slower healing of wounds and injuries, and increased risk of serious health disorders such as obesity, diabetes, arthritis, and even heart disease and cancer. Some of this is undoubtedly associated with self-neglect and sheer exhaustion arising directly from the care giving role, which can become all-consuming unless one develops a repertoire of pragmatic survival strategies
Surviving the Struggle and Resisting Self-punishing Attitudes
One immediate starting point is to try to resist self-punishing modes of thought. Caregivers are human beings with personal limitations and finite resources; to believe otherwise is to create unnecessary self-torment. Anyone who believes that only perfect care is good enough will rapidly be destined to nosedive into painful self-disillusionment. Impossible aims can only fail, and impossible wishes can only be disappointed. ‘Good enough’ is far less self-punishing than ‘ideal’ or perfect. And good enough means being realistic – no mortal can be in more than one place at any one time. Negotiating with human resources departments at work to explore caregiver’s leave options may be an essential first step – some organizations permit 12 weeks of caregiver leave per year under the federal Family and Medical Leave Act.
Clarify Medical Diagnoses, Prognoses and Treatment Recommendations
While it can be a painful business to fully determine the nature of the problem, how it is likely to develop and, ultimately, how much longer an elderly parent is expected to live, it is also essential. While physicians vary in how comfortable they are in relaying often distressing information, it is enormously important to be as clear as one can possibly be about what is likely to lie ahead. Asking for lay descriptions wherever a medical phrase causes confusion or incomprehension is vital, as is obtaining a clear description of the treatment plan.
Family Conference
Unless one is an only child, a sister or brother (plus spouses if there are any) may be recruited to help out on a regular basis. Wherever possible, it is inestimably helpful for family members who can help in sharing the care giving to all be aware of the nature and severity of the problem, what needs to be done, and who is going to handle which portions. Clearly, close and supportive family networks will be a good deal easier to co-ordinate and make plans with than more strained family relationships. Even here, though, adversity can sometime bring out the best in people. Sharing the load begins with the family, but it may also involve more formal sources of support.
Asking For Help
It benefits no one for a principal caregiver to fall ill; asking for help (and knowing who to ask) should come before a crisis like this, preferably, rather than after one has occurred. Caregivers who are either losing or gaining weight appreciably, not sleeping, feeling worried or sad and even suicidal, are not coping with the strains being placed upon them.
This may have nothing to do with personal inadequacy or weaknesses, except insofar as all human beings have inescapable vulnerabilities and needs (like adequate recuperation). The primary treatment physician may be a good person to start with for advice on what forms of community support may be available. These can include help with meal delivery, home health care services such as physical therapy or nursing, ‘homecare’ services (anything from cooking, cleaning, and shopping to companionship) and home alteration (such as improving bathing and toilet arrangements for disabled patients). Additionally, there are also facilities available for occasional ‘respite care’ breaks, ranging from home visiting for companionship for a few hours to day care to short-stay nursing home care.
One sometimes needs to be kind to oneself before one can be kind to others.
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