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The old Benjamin Franklin adage reads “If you fail to plan, you are planning to fail”
Today’s post is all about planning for the unknown future.
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I would like to share something with you.
As some readers will be aware, last year I inherited an elderly care situation.
With an aging population, it is not a unique circumstance. And like many who find themselves in this role, I was definitely not ready for it.
It’s been a continuous and humbling learning experience, but increasingly it has been an all consuming task that has left little time for other matters (think: blogging). And while it has taken a toll in many different ways, perhaps it has left me a better person.
Regardless, there is an important purpose to sharing this otherwise very private matter.
There was a recent event that I would like to tell you about, for reasons that will become clearer as we go along.
It was a mid week, overcast English day like any other, and my ward and I had driven to the hospital for an important appointment. At said appointment, we received a significant (if somewhat expected) diagnosis.
I say we, but I was really just a spectator. An observer with a very personal connection maybe. But after 12 months of unexpected struggle, I was certainly an attendee with a vested interest.
The care team had asked me to sit in on the appointment as the primary point of contact, but it was my perspective that made the session particularly interesting.
You see, I know intimately the long case history. And I openly admit to having a bias towards sentiment and denial – plus a strong desire to help even though I know we are fighting a losing battle (I mean, at 85+ years of age, wellbeing and dignity are basically the goals).
And the diagnosis (a moderate cognitive impairment) wasn’t really a surprise, I have known this individual all my life, but there have been moments over the last 12 months where I have not recognised them (and I suspect at those moments that they probably did not recognise me).
But my point is: My perspective was one of knowing the person affected.
Knowing the patient.
I also understood very well the cognitive assessments & the language used by the clinician. The careful balancing act of words to convey information while minimizing any upset. I salute the neurologist who gave the sermon that particular day – the delivery was handled with care & compassion.
The words did not come across with the apathy of being well rehearsed (having been given a thousands of times before), but rather as from one human being to another. The doctor spoke to my ward, not through them & continually asked if they understood what was being said and if they had any questions.
I marveled at the humanity of it.
Most striking of all on the day in question was the primitive nature of the clinical tools we apply to our analysis and assessment of the brain. I am embarrassed to say this, but I never fully appreciated how little of “the patient” is captured and conveyed by instruments like the MOCA and the ACE-R. Even after listening to patients complain about this very topic.
Administering these tools had previously been a measuring stick for me – giving me a convenient number that I could put into a medical file. In other words, a means to an end. But when you actually know & personally care for the individual in question, there’s a kind of sick horror about the ridiculous limitations of these assessments.
Another detail: I was in awe of the stoic manner in which my ward took the diagnosis. Even afterwards, in the quiet hospital corridor (me: “Are you ok?”, my ward: a nod). The fortitude was admirable. A generation made of stronger stuff perhaps.
In the car on the way home, however, I couldn’t be sure if it was fortitude or whether any memories of the recent experience had floated away. Either way, the news was not going to change the rest of the evening’s activities (dinner at a marvelous little pub tucked away into an exquisitely beautiful part of the world).
Not the pub, but a good imitation. Source: Tripadvisor
Like I said, it’s been a humbling learning experience. One that I appreciate many others have gone through before me, are going through now, and as our society ages there will certainly be more to follow. My heart goes out to those who find themselves caring for a loved one.
And I am extremely grateful to the professional that we dealt with on the day in question, as well as those behind the scenes who work to make things better. Their efforts do help to make the process easier.
But now I come to the heart of this post.
The real reason for sharing what is – as I said above – a very private matter.
The reason is this: A warning.
You see, the diagnosis “we” received had serious consequences in terms of planning for the future.
My ward (and their late partner) never put any plans in place (not that we have been able to find at least). They did not have any kids, so maybe they didn’t see a need. But future planning is about more than simply transferring generational assets and making funeral arrangements.
It is now apparent that my ward’s partner had been their carer over the last few years. My wife and I had suspected something was not quite right a couple of times. And during the lockdowns of the COVID-19 pandemic, once or twice I had asked the partner about several concerns regarding my ward and inquired if any help was required.
“No, we’re fine” was the immediate response.
In addition to fortitude, ‘pride‘ is also important to this generation.
But the unfortunate passing of the partner laid bare the futility of pride and the absence of planning (and I don’t write those words with any malice or anger, they are simply a truth).
The absence of instructions made everything more challenging – from the payment of bills to what to do with confidential work-related paperwork. And as soon as the funeral was out of the way, came the rush to put plans in place for my ward.
But for that, proof of capacity was required.
(and maybe now you can see where all of this is heading)
The pandemic slowed our process of determining capacity. It required a series of clinical assessments by an overstretched health care system that is still catching up with a backlog of appointments. And now – following the diagnosis of the neurologist – my ward no longer has capacity in the legal sense.
The signing of power of attorney (or a will) is no longer an option.
And our particular situation is made more complex in that my ward has power of attorney for another individual who has extremely pressing care matters of their own that need to be dealt with (honestly, the complexity of this entire situation makes it feel like a mine field with many moving parts).
We (more specifically me) are now exploring the UK court process of getting a guardianship order.
A guardianship order allows someone to make ongoing decisions on behalf of an adult with incapacity. This includes the paying of bills, dealing with bank accounts, and making decisions about care and personal welfare matters.
The problem is that the assigning of guardianship takes time – which is rather problematic on a number of levels in terms of the current situation. There are a number of matters that “we ” need to have dealt with yesterday.
At the end of the day, you can not help but feel that all of this could have been avoided with just a little planning for the future (and again, these words are not said with malice or anger, they are simply a truth).
As I said above, the point of this tale of woe is a warning for those who have made no provisions for the future.
At the very least, each of us should have a written and notarized letter (the existence and location of which is known to multiple parties) providing instructions for the various aspects of our individual lives.
These instructions could relate to:
- what to do in a situation where we no longer have capacity (who to notify, who is allowed to make decisions, etc)
- the welfare of children involved
- funeral plans (and how they will be paid for!)
- your home, and any other property you own
- savings in bank (including bonds & shares)
- insurance, such as life assurance or an endowment policy
- any social responsibilities
- pension funds that include a lump sum payment on death
- motor vehicles, furniture and other household contents
- family heirlooms, such as jewelry, antiques and other personal belongings
- pets (a wonderful little dog is involved in my current situation)
And none of this takes into account advance care planning when considering the long term consequences of neurodegenerative conditions.
“Advance care planning” is an element of palliative care in which the needs/wishes/preferences of a patient are provided regarding disease-specific and end-of-life issues. They are typically discussed in an iterative process, but all too often this discussion does not begin until there is progression of symptoms, cognitive decline, or the condition enters the terminal phase (there has been some research on this area of Parkinson’s care – click here to read an example).
All of this said, until recently I too apparently had been under the silly illusion that I was going to live forever, and had no instructions in place. This has now been rectified, and (famous last words) it will be reviewed regularly.
This has been a difficult post to write, but it felt necessary – if only to prevent others from going through the same frustrations of an avoidable predicament.
Next post, we’ll get back to the regular research.
But always remember: Be kind and do not judge
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