Tell Me, Doctor

I recently proposed to teach a course on caregiving for seniors to a noncredit educational program that would focus on financial concerns, getting and giving care, nurturing relationships and facing challenges of extended caregiving. The course was approved, but it had to be canceled because of insufficient enrollment. Now I can imagine that the economic downturn was a factor in the low enrollment, but I can't help but wonder if another factor had even more weight. Caregiving is perceived as something not worth studying.

Perhaps it’s because many caregiving tasks are viewed as common, normal activities, like preparing food, making appointments, getting groceries, doing laundry. What’s the big deal? These activities may be part of our normal daily routine, but when we are doing them for someone else on a protracted basis, we are assuming responsibility, whether a little or a lot, for the care of another adult human being. Whether preparing a meal or dispensing medication, caregiving becomes a big deal over time.

So many times I have heard caregivers say, "if only I'd known…I would have done things differently." Too often caregivers find themselves committed, but unprepared to meet their loved one’s escalating needs. The older we get the more likely it is that our friends and family members will need care, just as we will one day need care. Wouldn't it be wise to learn as much as possible about the subject? Wouldn't it be a good idea to acquire some skills so that we didn't have to learn only from our mistakes?

The low enrollment for my course offering was disappointing, but as often happens with setbacks, it got me thinking. The only way to get folks to even consider taking classes on caregiving is for doctors and hospitals to recommend them, like Lamaze classes for pregnant couples. This would require that medical professionals acknowledge that much care now happens in the home. They need to be open and honest about prognoses and the amount of care that may be required as the illness progresses.

I envision a day when a frustrated and frightened family member can ask her mother’s physician, “Tell me, Doctor, what should I do?”, and hear something like the following. Your mother has severe chronic obstructive pulmonary disorder. Here’s the prognosis…. She will need…(equipment, services, resources). Wherever she is living will gradually become a mini-nursing home. Her care needs will escalate over time and this situation could go on for several years. We have a class here that can help you to learn more about giving and receiving care in general and for COPD in particular. This way you can be prepared.

The Caregiving Map

Our consultant to all things WEB, Sherry Knecht, suggested the What I’m Reading Now section. This makes sense since I read a lot. However as I started listing what I was reading, I realized how it might seem to be all over the map. In a way it is. Because caregiving in general, and geriatric care in particular, covers a big map:

Illness and/or geriatric issues and concerns
Caregiving issues and concerns
Management challenges and strategies

When people are faced with a new set of responsibilities it is very normal to reason---this is similar to something I’ve done before, therefore I can do this.

Here is my problem with this reasoning. The situations may only be similar on the surface. A deeper look will reveal major differences which, if unaddressed, will cause serious problems down the line.

For example, one comment I hear quite a lot from women: I raised x number of children---I can take care of my mother. Often there is a specific body language/posture---the jaw sets, the chin comes up and the arms are folded---the captain at the prow of the family ship. While I applaud the women’s commitment to family care needs and am glad they are on the job, I worry that their equating caring-for-children with caring-for-Mother will spell trouble.

In my experience, caring-for-Mother is to caring-for-children as
---cooking at home is to running a restaurant or
---starting a business is to buying a business that is 80+ years old and the founder is still the CEO!

More about this later.

New Aging

In her book Aging, the Health-Care Challenge, Carole Bernstein Lewis notes that “old age is a new concept and a relatively new phenomenon.” She quotes Leonard Hayflick as saying of aging that it is “…a process for which evolution never prepared us. One might conclude,” he adds, “that aging is an artifact of civilization.”

Our prehistoric ancestors were lucky to live to 30. Only in the past few centuries has the allotted time for a reasonable lifespan been extended to the familiar three-score and ten. Living beyond 70 into one’s eighties or nineties is new, thanks in large part to public health improvements resulting from increased food production, sewage treatment, water purification, vaccination, and antibiotics.

But along with these improvements in age extension, a host of new problems has arisen. We need to remember that a tribe taking care of three elderly people is different from three young people taking care of an elderly tribe. This extends beyond the financial burden placed on the children and grandchildren of aging baby boomers, ranging from home-care expenses to medical emergencies and future Medicare and Social Security obligations. It also extends into emotional and ethical territory, where questions about eldercare inevitably lead.

We need new ideas to begin to deal with this new phenomenon. We need to ask new questions. Seek new answers. Clarify new values. Experts may propose and debate the issues, but we all are living in this new reality and we all need to join the discussion. We need to confront the hard realities of resource production, availability and allocation. We need to come to a consensus about values. How much do we value the elderly?
How will we provide the resources—medical, financial, physical, emotional, psychological—to care for a large population of people living into their nineties?

I have found that sharing stories of actual experiences helps create programs that work. We need to confront the hard realities, clarify our values, and create solutions that work. Share your stories!