Health Condition is Strongest Driver in Determining Ongoing Caregiving Needs

Managing Health and Stress Brings Long Term Benefits for Both Caregivers and Care Recipients.

As part of writing my book, I’ve been trying to sort through the different caregiving scenarios I’ve experienced in my life – with my great-grandparents, grandparents, parents, aunts and uncles, friends – as well as the scenarios that I’ve heard about while talking with many caregivers in a variety of stages. Based on all that I’ve heard so far, it seems to me that there are three big categories of “aging and approaching the ends of our lives;” all are largely related to health condition and all have a strong impact in determining the depth and breadth of caregiving needs that might develop for an individual over time. While many other factors come into play along the way (such as family situation and make-up, financial resources, etc.), overall health condition is probably the single most important driver when thinking about how an individual’s caregiving needs may develop over time.

The three big categories I keep seeing and hearing about are:

Age naturally with limited health problems and die in place … Overall physical and mental health and mobility is stable with very few challenges, and independent living is viable pretty much “until the end”; there is slow but steady deterioration related to aging, with small medical challenges related to the natural aging process over time, such as expected health issues like cataracts, knee or hip replacements, diabetes, pacemaker, etc.) – but nothing that dramatic or insurmountable in terms of lifestyle. The loved one is able to die at home (or perhaps in assisted living or hospice), mainly due to natural causes and largely without much medical intervention or prolongment of life by artificial means. Minimal support may be required at first, but as time goes by, more support will be needed with driving, running errands, meal preparation and other daily activities.

Slow but steady decline (related to natural aging, as above), but punctuated by a sudden health issue or worsening chronic health condition that hinders mobility and ends independent-living abilities… Health starts deteriorating over time, with a series of small medical challenges, and then there is a fall, a stroke, or worsening of an existing condition (heart disease, diabetes, etc.) that results in lack of mobility and restriction of ability to perform IADLs (instrumental activities of daily living, such as cooking, driving, using the phone/ computer, shopping, bill paying and managing medications), and onward to ADLs (activities of daily living, such as walking, bathing, dressing, toileting, teeth brushing and eating). Depending upon the severity of the situation, it sooner rather than later becomes clear that living independently is no longer possible (or will not be viable for long). Final days, months or years might be spent at home or in an assisted living facility (or in hospice) – but most probably, support will be needed from medically-trained personnel in order to meet the loved one’s daily needs. The length of caregiving time, as well as the depth and breadth of caregiving needs varies greatly, depending on specific health conditions, which are highly individualized.

The third category seems to me as though it should be broken down between “longer-term” and “shorter-term” situations, since the emotional mindset required by the caregiver can be quite different for each.

Time-related longer-term diagnosis of specific disease or health condition such as memory loss or dementia, Alzheimer’s, Parkinson’s or ALS … that results in lack of mobility and restriction of IADLs and ADLs, such that living independently is no longer possible (or will not be viable for long). As above, decreasing ability over time to manage IADLs and ADLs, and a need for greater support – except for the average length of survival time is typically longer than the average caregiving situation (i.e., 3.5 to 10 years, or even more), and the course and treatment of the disease/ condition has become rather standardized from a medical viewpoint (medications, benchmarks, etc.). Again, final days might be “at home” or “in an assisted living facility” or hospice entity.

Time-related shorter-term diagnosis of disease or health condition such as cancer, leukemia, etc. … that results in lack of mobility and restriction of IADLs and ADLs, with the average length of survival time typically shorter than the average caregiving situation (i.e., less than 3.5 years).

The caregiving requirements to be met (and how they are met) in each of these health-related scenarios can vary greatly not only on the specific health condition or disease, but also based on whether the loved one:

• is part of a couple (i.e., has a life partner who for at least some period of time, can serve as the main caregiver), or not
• has children (and if so, how many siblings, as well as their genders and ages – and their relationships with each other (whether open and honest, or some level of dysfunction)
• is open to having difficult conversations about the situation, and how they would like their wishes honored
• has a proper plan in place, including designation of Power of Attorney and all medical documents related to “Do Not Resuscitate,” etc.
• is willing to consider assisted living or hospice as an alternative, if the time should arise when caregiving requirements may become too great for non-professional family caregivers

• financial resources in place to ensure safe sheltering and care to the end of life
• type of insurance in place (Medicare or Medicaid, long-term healthcare insurance, supplemental health/ cancer/ disability insurance)
• presence of a medical and/ or healthcare professional among family members, since this can often be extremely helpful to non-professional caregivers