The Chronic Illness Journey Blog

You’ve probably seen the ad for a shingles vaccine that states, “Shingles doesn’t care.”  That’s true.  Other diseases don’t either.  Cutbacks on healthcare in the “Big Beautiful Bill” do not primarily target seniors.  And yet, seniors will suffer serious collateral damage.  This is not a partisan statement.  Illness doesn’t care if you are red, blue, white, brown, or green.  It is the way of things that most Elders will develop chronic illnesses.  If hospitals, clinics, and nursing homes are forced to shut down or restrict care, if home care options are restricted, Elders will be disproportionately impacted.  After all, we need and utilize the most resources.

This is particularly true in rural areas.  Imagine that you or a loved-one is on dialysis and your local dialysis center is forced to shut down and the next nearest center is two hours away.  How are you going to make that trip two to three times a week?  If hospitals close and you can no longer care for your demented parent at home, what are you going to do?  Even if you manage to get your loved-one admitted to the hospital, they may get ‘stuck’ there as alternatives such as nursing homes or home care become less available.  Hospitals are dangerous places for Elders!

So, what to do?  There is no easy answer, but a good first step is to educate yourself and make a plan.  Some ideas:

• Review your current healthcare insurance. Read the brochure they sent out.  Consider changing your insurance during “Open Season,” depending on how your health status changes and what plan best matches your needs.
• Stay alert to changes in legislation, both federal and state, as they evolve, and how they might affect your insurance and healthcare availability in your community.
• Start planning now. Most elders will develop a chronic illness, if they haven’t already.  Discuss this as a family. Consider likely ‘what-if’ scenarios.  While there is no perfect plan, “no plan” is probably not the optimal one.

In my book, The Chronic Illness Journey – Finding Your Way, just published, I go into how to plan for chronic illness in seniors in more detail.   Available on Amazon.

One of the things I write about in The Chronic Illness Journey is how families have changed. It used to be that when a family member got old and frail, needed care was provided by families.  Indeed, prior to the 1960’s, when Medicare/Medicaid came online, you might say that families were the main form of insurance most people had.   While private health insurance was expanding during the 1950’s, by the late 1950’s only 25% of Americans over 65 had insurance.

Prior to widespread availability of birth control, large families were common.  My paternal great grandparents had 7 children!  They were needed around the farm, but it was more than that.  It was a common expectation that at least some of the offspring, especially the girls, would live nearby and provide support for their elderly parents, when it became necessary.

Obviously, much has changed since the 1960’s in terms of healthcare and insurance – some for the better and some for the worse.  Underappreciated has been the changing roles and expectations of family members in terms of support for ailing elders.

Two big things stand out – 1) fewer elders have family members living nearby and 2) more families have dual incomes.  In the 1950’s about 65% of families had a working husband and a ‘non-working’ wife.  Today about 60% of married couples are dually employed.  The reasons for these changes are obvious – greater social mobility, changing gender roles, especially for women, and economic necessity requiring a dual income.

The changing role of women, now more likely to live at some distance and more likely to be employed, has had a great impact on elders.  The explosive growth in assisted living and nursing homes reflect this change.  That we now have more old people with more chronic conditions also undoubtedly contributed to this expansion.  The first inventory of nursing homes in 1954 estimated approximately 270,000 people lived in 9,000 nursing homes.  In 2025 there are approximately 15,600 nursing homes with 1.7 million licensed beds.

It almost goes without saying that despite more assisted living facilities and nursing homes being available, there is a massive unmet need for caregivers.  The problem is not just a lack of warm bodies to do the work; we haven’t figured out how to pay for the care that is needed.  Medicare does not pay for long-term care. Medicaid, as described in more detail in The Chronic Illness Journey, requires people to be functionally impoverished.  Even if a person has Medicaid, the per-diem rate for nursing home care does not adequately cover costs.  Something has to give.

Barring some radical, positive change in how we pay for care of the elderly, which looks most unlikely in the near future, things look to get worse before they get better.    There is no federal white knight riding to rescue us. It will be up to us to protect those we love.  And that may require a re-thinking of what family means.

It may be that some adult children see far enough ahead that they decide to live near elderly parents in order to help.  They may build accessory dwelling units (ADUs) for parents to live with them (assuming they have the necessary funds).  They may even adjust expectations regarding dual incomes to accommodate future caregiving obligations.  Still, I am doubtful that many will do this or that it will be enough.  Such adjustments may be possible for those who are well-off, but impossible for many others.

Another, more radical possibility is rethinking the very notion of family.  Groups of people might consider banding together as mutual aid societies – with formalized expectations and responsibilities for other members – something like the “communes” of the 1960’s come to mind, without the hippy trappings.  I imagine any such arrangements would be driven less by cultural or political sentiment than economic necessity and survival.

Hillary Clinton famously wrote that “It takes a village.”   The saying has almost become trite.  But she’s got a point.  If there is one thing I would think Americans of all political stripes would agree on is that the current system of healthcare in general and how we care for elders in particular isn’t working.   I don’t claim to have the answers, but solutions will require a clear-eyed acknowledgement of the challenges we face and a willingness to experiment with new ways of doing things.