By Pamela D Wilson CSA, CG, MS, BS/BA
Planning for life, health and the future care of a loved one involves predicting what might happen. Predicting what might happen may be easier in some situations than in others depending on the number of factors that must be considered, for example financial, health and available caregivers, potential complications and the ever present unknown, identified as we don’t know what we don’t know.
A common disclaimer that appears in many financial planning documents states that “past performance is not an indicator of future returns.” The same might be true of planning for health. While an individual’s lifestyle and behaviors contribute to the present situation, there are always complicating and unknown factors that occur at what seems to be the worst possible time.
Is it possible to make realistic plans for care? What factors might be involved in attempting to identify options for the future? Do family caregivers really want to know information, good or bad, about what might happen so that more, rather than fewer, options might be available? Will health care providers be honest about situations, rather than omit or sugar coat information so as to avoid upsetting family members? What steps should be taken to avoid unexpected surprises when caring and planning for the care of a loved one? What are the pitfalls of inadequate or poor planning?
I have been on both sides of this situation as a family caregiver and as an advocate for families whose loved ones are in situations of needed care. It is possible to make realistic plans when various scenarios and assumptions are made.
It is more difficult to receive honest information and feedback from health care providers who become immune to care situations because of daily involvement in situations that become routine. Aspects of care and changes in medical conditions that become insignificant to health care providers are very significant to family members seeking answers and attempting to plan for the future.
Many times unexpected events occur because health care providers fail to inform or to discuss future possibilities. Unexpected events also occur because families don’t know what they don’t know and fail to ask questions – the right questions. In these situations, having an experienced advocate who has helped families through similar situations proves invaluable.
Common pitfalls include these common assumptions: we will live forever, a health condition may be cured by prescription drugs or treatment and that the current situation (health) will maintain and not advance to a more serious state. While maintain health may be possible in situations of early diagnosis, where the effects of disease may not be significant or life altering, maintaining health is not always possible in older adults experiencing multiple health diagnoses who take a long list of medications.
In situations where health is compromised there are a number of factors, for example nutrition, weight, exercise and hygiene that benefit from ongoing monitoring. A change in any of these factors may indicate a significant change in condition. For individuals diagnosed with dementia, something as small as a change in routine or a change in condition has the potential to have life changing results.
In considering planning, it is best to draw up a list of concerns. For some caregivers these concerns include finances to pay for care, where a loved one will live, driving and transportation, time available for the role of caregiving and location – where the caregiver and the parent live.
Once a list of concerns is identified then a list of possible scenarios might be developed. For example, a parent may be able to live independently today but if health declines what is the next option. How willing is a parent to accept help in the home and what are the costs? Might assisted living be an option and what are the costs? If a diagnosis of dementia or Alzheimer’s exists what are the short and long term scenarios for care? What are differences between assisted living and other types of care as well as the costs? What are hospice and palliative care?
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