As Eldercare Comes Home

When not overshadowed by President Trump’s perfect Ukraine phone call, the national conversation in this Presidential election cycle pertains to higher education funding and healthcare.  But the issue that is approaching steadily from behind is how we’re going to manage our rapidly growing population of senior citizens.

Youngest and I sat before the television screen, watching and commenting upon the potential candidates during the fourth Democratic debate on October 15.  It was the usual back-and-forth and the only recurrent question between us was why in the hell is Beto O’Rourke still here?  But out of nowhere, Senator Amy Klobuchar of Minnesota caught my attention with her comments that apart from the two principal issues, who was paying attention to other pertinent topics, such as the rapid growth of the aged population in the United States – what she referred to as The Silver Surge.  Perhaps it’s that Minnesota has a significantly larger and growing elder population; next year, Minnesota’s 65-and-above age cohort will exceed the 17-and-younger cohort for the first time in their history and by 2030, more than 20% of Minnesotans will be senior citizens.  They aren’t as far along as Maine, thank you Jesus, but they are well on their way.

Klobuchar is right.  The almost complete absence of political conversation means that any meaningful programs moving forward will not pertain to the elderly; we will have to manage via programs cobbled together at the state and local levels.  The reality is that the onus will devolve down to the granular level of the family unit.  I purposefully stated that the issue is approaching from behind because the adult children in a society with a declining middle class are looking forward generationally, attending to the needs of their own families and children.  Kids are very squeaky wheels requiring investment in time and money and their parents will hear very little from their own elders about their conditions until there is a significant health event which knocks the axle off the elder truck.  It’s generally a two-way silence; the adult children are simply trying to keep things afloat and the elders say little out of pride, fear or shame.

So once again, it’s up to the family to work this out.  Our society has become so complex that inattention can have potentially catastrophic results personally, medically and financially.  The obvious question then is where do we even start?

The good news is that old age doesn’t just happen overnight, like – *POOF* – Mom’s suddenly old.  Aging is a continuum and while there’s always a downward trend, the slope is typically longer and shallower until there’s one or more medical events that sharpen the decline before culminating in death.  Perhaps the first question to answer then is where are your elders on the continuum?  Are they poster elders for Senior Olympics or are they already doddering around on gimpy legs with a laundry list of daily medications required for simple survival?  Even then, how is their condition mentally versus physically?  The body itself might be in decent shape for elderhood but Alzheimer’s, while severely affecting mental capacity, is a physical malady.

The question of location on the continuum is important.  Once you have a sense of that location, you can begin to consider some of the aspects that must be covered as they move forward along it and with that, a sense of the time and criticality with which these aspects must occur be addressed.

What are some of these aspects?

The Conversations.  American Elderhood can be aptly described as terra incognita for our society.  We’ve been obsessed with youth and uncomfortable with the concept and practice of dying.  Medical advances have pushed the envelope of lifespan so that the fastest growing demographics are our elders; and remember that there is not just one age cohort for the elderly.  But that increase hasn’t been correspondingly matched by either assets to financially support the longer lifespan or an increase in individual mental and physical capacity to support it either.  There have to be multiple conversations with them to help plan so that their waning days are as comfortable and meaningful as possible.  Given the complexity and emotional discomfort that can accompany such discussions for both elders and adult children, it’s entirely likely that these won’t be completed quickly.  The time to start having the conversations is sooner than later.

The Overwatch.  Is it possible to develop meaningful, yet discrete and respectful, tabs on how our elders are doing?  It’s been difficult to even find a term for this situation; surveillance is laden with negative connotations and is disrespectful to them, not to mention potentially counter-productive.  The difference between a declining elder and a kid is that a kid with an offended sense of pride can’t blind you by tearing up your HIPAA forms.

The Siblings.  Do you have siblings and what are their circumstances?  Are they geographically nearby and what is their relationship with both the elders and you?  How are the lines of communication and is there a delineation of responsibility?  Most importantly, are they willing to acknowledge elder wishes even if they might not be in agreement with them?

The Finances.  How aware are you of their finances and are they capable of handling them?  If you have to step in, are measures in place to allow it?

The Documentation.  There is a considerable amount of paperwork involved with the elderly and much pertains to assuring that their rights are protected, particularly as they become less able to care for themselves.  Everybody knows about wills, but do you know where your elders have theirs and is it accessible?  Is there paperwork granting Power of Attorney not just for financial matters but healthcare matters as well?  Do you have the appropriate clearance to speak with the potentially numerous medical providers?

The Allies.  The demands upon you will increase as your elders age and you will likely have to depend upon the assistance of others in the eldercare system.  Have they reached the point of requiring your attendance at appointments and who can get them there?  What if they have a pre-existing relationship with another professional, such as their own lawyer or financial adviser?  Do you have a go-to person for help in navigating a complex medico-legal eldercare system?

The Systems:  Healthcare and Housing.  You’ve likely been spending your time dealing with the kids and haven’t had to seriously consider the complexity, opacity and cost of the healthcare system and elder housing structure.  Getting a crash course in navigating them is frustrating and fraught with peril.  What exactly is the Doughnut Hole – yeah, that’s actually a thing – and why must your elder leave their continuing care retirement community for somewhere further away for skilled care?

The System:  End of Life.  Even if your parent has been clear about everything – communication, paperwork and documentation, final wishes – getting him or her to that point at which final wishes can be honored can be problematic.  Most of us have little experience with death and the confluence of physical and emotional factors can create an immensely stressful situation.  Is there clarity about what the final wishes are?  How do you contend with the potentially large number of specialists who might be called in because of multiple systemic failures?  What are the resources available to you?  What exactly is hospice and when is the best time to get them involved?

What’s the aftermath?

These various aspects itemize neatly, as though each was a Lego block that stacked and nestled neatly together in a self-supporting structure.  But the reality is that each aspect is more like a thread that would be woven among the other threads in a tapestry.  Each can dramatically impact another aspect for better or worse and how one works out can be dependent upon how well another aspect was addressed.

Caring for your elders – parents or grandparents – can be a rewarding and fulfilling experience and there are those who count it as a privilege.  But it can still be problematic and there are moments when you are likely to find yourself pushed and exhausted and at times, bereft.  Understand in those moments that you aren’t alone and if you’re able to look up, there will be moments of amazing grace emanating from circumstances and people that will pull you through.

Much of what that’s written moving forward will not necessarily be an exhaustive What to Expect When You’re Expecting type of guide to everything about aging.  But it will be framed extensively by the experiences of being involved with an aging parent with Dementia, including the missteps and miscues.  All of the aspects mentioned can be drawn directly from personal experience and to the extent possible, these experiences will touched upon so perhaps something of value can come from them.