To die of old age is a death rare, extraordinary, and singular…a privilege rarely seen.
– Montaigne, Of Age, 1575
Getting old isn’t for sissies.
– The PracticalDad’s grandmother (circa 1990)
You should probably start writing this down…
– BH, The PracticalDad’s wife (circa Autumn, 2014)
American Elderhood is terra incognita. Our parents are living longer and yet the tide of financial assets to support them in their elderhood is ebbing, as is our own. The structure of the family is imperceptibly changing as a result and it is up to us in the moment to figure out how to manage. The model that we’ve known for the past three generations, retiring at a relatively early age and spending our later years with a degree of material comfort, is ending. And it’s not just happening in the United States. The general unrest in France is wholly rooted in the question of retirement funding and the unrest in Chile is partially rooted in anger at the status of retirement and pension funding.
Not only has the lifespan increased, but the causes and nature of death for Americans have changed as well. At the turn of the 20th century, 120 years ago, the American lifespan was approximately 50 years and it has since risen to almost 80 years, with a few years differential by gender. In that same span, the causes of death have shifted as well. Back then, the top three causes of death for our elders were pneumonia/influenza, tuberculosis and GI infections whereas today, they have been supplanted by heart disease and cancer. This doesn’t touch upon accidental death more than a century ago and the statistical rise of Alzheimer’s today; their elders died young enough that Alzheimer’s wasn’t a consideration whereas our elders won’t get offed when the family buggy is whacked by a train at an unmarked crossing.
Death was a quicker process back then and consequently, far less expensive. Eldercare is challenging with a varied set of demands that range from assistance in ordering and managing medications to getting a declining Elder to appointments, and even attending the appointment with her. Factor in the degradation of mental and/or emotional status that might accompany the decline and it can be highly problematic for both Elder and adult child. My own parents were a microcosm of this disparity. My father succumbed to a relatively short four-month course of cancer while my mother passed after a several year affliction with Alzheimer’s. And it was early in that latter illness that BH made her suggestion: You should probably write this down…
The suggestion was god-sent although it wound up being a far different thing at the end than at the outset. It wasn’t a consideration for my father’s illness as his disease course was relatively fast and straightforward and he was in full possession of his faculties up to the moment of his death. But contending with a lengthy and convoluted process like Alzheimer’s involved not just medical, but logistical and legal issues that made it the singularly most important tool in the endeavor, serving as a resource and stay against the confusion that arises out of contending with a stressful, prolonged and complex situation. My exercise in this lasted for more than two and a half years and in the end comprised 63 typed, single-space pages with entries that only ended upon the day of her death. But having done it and finally reflected upon it, there are some points that can be taken from the document and the process.
First, understand precisely what it is…and what it isn’t. I referred to my notes as a journal at the outset and that, in retrospect, was a poor descriptor. Journaling is now a practice in which someone engages to record their feelings and/or thoughts and is recommended for self-help and exploration. Keeping notes for the process of Eldercare is wholly for informational purposes and you should expect that you will likely share at least a portion of the document with a sibling or spouse. Full disclosure: managing a parent with Alzheimer’s tinged with paranoid dementia led to instances of personal distress that are best left unrecorded for others. To put it in terms of professional journalism, you are writing to cover the essential questions: who, what, when, where, why and how. If you are compelled to actually maintain a journal for reasons of self-care, keep it completely separate from the log notes and never mingle the two.
Second, decide if it’s even necessary and if so, whether it’s even the appropriate time to start the log notes. It might not even be necessary, as in the case of my father. But if you do deem it necessary to begin keeping log notes, there isn’t necessarily any hard and fast rule about when to begin. It doesn’t just tick over automatically, such as the arrival of the first AARP magazine at age 50 or Medicare at age 65. There should be a defining instance that drives the start of the process, and for the logkeeper, it will indeed be a process. In my mother’s situation, it was a spate of mutually frustrating incidents for both my mother and I that led to my wife’s suggestion. This was confirmed in conversation with my sister, who was also noting separate incidents. Every entry that I made noted the date, except for the first entry which referenced an entire two month period followed by a synopsis of events.
Third, understand that this is something that perhaps shouldn’t be shared with the Elder. Pride is a driving factor for many people and is especially so for an elderly parent who has raised you and saw you into your own adulthood. It can be physically dangerous for them as they are unwilling to accept that their debility can pose significant risk, particularly in regards to the driver’s license. Hell, I can attest to this in my own debility as my toddler grand-daughter will sometimes yell “Pop! Cane!” if she sees that I don’t have it when we venture out somewhere. Sweetpea, I love you to death, but please…do I have to?
The point is that while it is an invaluable tool for you, consider what their response would be were they to know. I have met adult children who openly carry a notebook for the appointments and the elder is fully accepting. In my mother’s case, her knowledge that I was taking prolific notes would have disastrously exploded in my face.
Fourth, establish ground rules on making entries. What prompts an entry and what are your rules on maintaining it? Mine had weeks between some entries just because there was nothing materially new to write. If one daily phone call is just like another ad infinitum, what’s the point? At other times, she simply refused to speak with me; there were a few instances when I made notes that I had at least attempted contact just for informational purposes. But if there was a new thread of conversation, concern, allegation or news, then it was worthy of an entry. Likewise, any interaction with another individual – doctor/nurse, lawyer, social worker – led to an entry just to help keep straight the growing cast of characters as well as their input.
The other two comments here are the need to stay current and disciplined in the process to minimize the confusion. There were instances when I had to refer back to texts with wife and sibling to jog the memory, but that was the exception to the rule. I also kept a small notebook in the glove compartment in the event that I needed to take a few notes after leaving her. Finally, consider the depth of information that you are planning to retain. I rarely wrote anything pertaining to exact medical findings – blood pressures, etc. – because that’s the purpose of the medical record. If there was a material change in the physical or mental status and especially if it lead to some new circumstances, then I’d make the entry. But I never saw the point of writing every last piece of data.
Fifth, expect to share this information with family. When there are siblings involved, communication is critical to keep a bad situation from getting worse. One of today’s boons is the technology that allows almost instant communication; texts were a lifeline with both my sibling and wife and there were occasions when we literally blew up the text feed. But texts aren’t a great way to fully capture the gist of an extended conversation with the elder or a doctor/lawyer. It wasn’t uncommon to follow a brief text with a lengthier email, followed by the log entry and towards the end, I simply did the log entry and then cut and pasted it into the necessary email.
It’s only been in the past two weeks that I’ve come to realize this: Google Docs could have made my life much easier. There are potentially thorny questions, such as who has administrative access and what are the family repercussions of limiting access; but with one sibling who was in lockstep agreement on where we were headed with our mother, it would have made life a bit easier.
Sixth, make certain that the information is backed up or printed.
If you’re a Philadelphia Eagle fan, you’re familiar with Coach Doug Pederson’s philosophy of the Next Man Up. In the worst case scenario of your death, the document should serve as a reliable guide to what has occurred so far with your elder, making your successor’s work at least that much easier.
The last entry in my own log notes simply covers the final hours prior to Mom’s early morning demise. There were separate notes for the logistical and legal activities that arose after the fact but it just seemed appropriate to keep them apart so they have no part of the log. The binder then went into the bookcase and it wasn’t until many months later that I was able to read any part of it without anxiety or nausea. There are a few entries from the month prior to her death that still affect me deeply. But I have pulled it occasionally to read just to remind myself of certain things, and to see what can be taken from it for when my own family might be responsible for me.
And for the record, when the grand-daughter reminds me to take the cane, I take the cane.