Taking a personal moment - why I am thankful for comprehensive advance planning.
Updated: Sep 29, 2020
Even end of life consultants, advance planners and doulas sometimes need to stop and remember to appreciate how much time and effort solid advance planning can save, especially when an unexpected diagnosis happens in our own family circle. This week I have been incredibly appreciative...
As attentive Gentle Readers will have noted, my writing has been on the scant side of late. Firstly, as already disclosed in an earlier post, my writing schedule has been truncated in part due to writing commitments alongside exciting new education and training content that I will be offering online and face-to-face very soon*. Secondly - and I have not disclosed this aspect of my private life to date - my mother has been hospitalised twice in the past few months, with admission by ambulance, which is always quite serious. So, between navigating a disinterested and very entitled medical doctor for the first admission, and deciding to file a formal complaint with the hospital in question (outcome = whitewash), and dealing with a second serious admission this past month, my time - and therefore my attention - has been otherwhere. We finally this week received a definitive diagnosis for my mother, however without a good deal of advocacy and years of advance planning being in place we might still be wondering what was going on. This post, therefore, will be a personal reflection on why advance planning and death literacy really matter as much as they do.
*I need to move website platforms in order to do this, which does not affect you the reader, but has delayed my rollout of the education components while I transition the site at the back end. Your patience is appreciated. Thank you!
All the Hats!
Before I reflect on the diagnosis and prognosis aspects of my mother's condition, I will disclose that I am the person who wears all of the "hats" in terms of responsibility for decision making for my mother. These hats, by the way, are in addition to the range of headgear I don already in my various roles as end of life consultant, university lecturer and tutor, social researcher, writer and editor, and dog owner. I do have siblings, one of whom is our mother's carer, however there are compelling reasons for not sharing around the authority and responsibility hats that I do not need to disclose here. Suffice it to say that every buck, at every point in the process, stops with me.
I am my mother's Enduring Guardian (EG), so I make medical decisions for her, I am her Enduring Power of Attorney (EPoA) too, so I manage and maintain legal and banking processes for her (I am also her Executor for her estate after her death, but she is very much alive at the time of writing, so this information is for context only). The 'Enduring' aspect matters in places like the state of NSW in Australia, where - in the absence (at the time of writing) of general, formally-recognised forms for authorising people to be spokespersons and representatives - the only way to ensure wishes are followed is to pay a solicitor to draft and formally lodge EG and EPoA documents. Medical Guardianship and PoA without the 'Enduring' aspect are practically meaningless, so do not draft or sign off on these - I must emphasise that you must insist on the most rigorous and legally-effective document types that you can. This paperwork then denotes you as the Responsible Person in the eyes of the law, the banks, and the medical staff - so everything that can be streamlined in terms of information transfer and taking care of admin for someone's life is made possible with this paperwork. If you don't have yours in place now, please undertake to complete it as soon as possible.
Fortunately, in the case of my mother and I, we had undertaken the formal documentation process many years ago, and the paperwork has been active for many years - this means that when bills come in for my mother I pay them, I negotiate the strata work for her villa, and when she needs to be hospitalised I am the person that the doctors speak to so that I, in turn, can inform the rest of the family. I am comfortable in this role as I am good at holding boundaries, and I am absolutely clear about my mother's own parameters for desired care and hoped-for outcomes so I can advocate and communicate with administrative and medical staff alike. In a nutshell, I am my mother's built-in end of life doula, but sort of on steroids, at least legally speaking. I cannot emphasise enough though, that without the appropriate legal documents - and the attendant conversations over the years where I have re-checked her wishes and boundaries - it would be hard to keep my mother as comfortable as she currently is, and arguably impossible to do now with her own wishes as the guiding priority.
The Unexpected Diagnosis
I mentioned earlier that my mother has had two hospitalisations within a relatively short time-frame. During the first we did not really get any answers as the doctor assigned to my mother's case was quite disinterested, despite repeated requests for answers regarding a physical diagnosis, and therefore knowing the likely prognosis. On a truly personal note, part of me is incredibly angry that the first hospital admission late last year did not include more cognition testing - I was open with nursing staff, as well as the so-called geriatric specialist whose team my mother was assigned to, that my mother's memory and recall were showing signs of considerable decline and that we were concerned about her cognitive capacity. But as the doctor concerned did not take her case seriously and did not follow through on any aspect of her care that had been discussed I am working on letting go of wistful fantasies that maybe things could have been better... After all, this doctor put his hand physically into my face and said to me when I had questions for him: "No. Stop. I'm talking now." Yup, this is a male doctor in charge of vulnerable elderly patients and responsible for communicating with family members - and even end of life workers sometimes have a hard time with medical staff.
It is probably not surprising therefore, that no diagnosis of any kind was forthcoming from that admission.
The second admission saw the same underlying physical condition present again, and it took some pinning down, but we are now on top of it (the second hospital admission saw a different, and far more organised geriatrician in charge of my mother's care so we had firm results and answers). The unexpected information that this hospital admission has seen, accompanied by a shockingly extreme diagnosis, is that my mother not only has 'moderate to severe cognitive impairment'; a confirmed advanced Alzheimer's diagnosis is the final medical determination. As often as I tell students and clients that each path of dementia is unique to each individual, of course that all goes out the window when it's personal. I knew, we all knew, that our mother was not transferring short-term memory into long-term memory anymore, and that her world was getting smaller. However, on the superficial, standardised cognition test which is offered by GPs and as a perfunctory process for hospital testing of older persons my mother scored 30/30. Every time. We had no idea and I am truly upset and sorrowful that my mother is slipping away with incredible rapidity. Alzheimer's takes no prisoners, and in my mother's case her day-to-day function is quite coherent and clear which is why we didn't realise the extent of her cognitive decline.
It was due to deeper, more sophisticated cognition testing undertaken during this latest hospital admission that the extent of my mother's cognitive decline was discovered, and these tests were undertaken because I advocated strenuously on her behalf. Mind you, the hospital staff were also aware that a complaint had been filed, so this factor may have played a part in ensuring a full panel of testing was undertaken. Ultimately though, she is not a candidate now for early-intervention drugs which have some chance - one in three, so not great odds necessarily - of slowing the progress of the disease. The deeper testing, which included the Montreal Assessment test among others, proved that despite my mother's capacity to know what day it is and who all the people are around her, Alzheimer's can still be eroding cognition and memory in peripheral and other general areas of the brain.
Why Advance Planning Matters for the Unexpected Diagnosis
When I found out my mother had been transported to the hospital again earlier this month, my first stop was the nurse's station to ask which geriatrician had been assigned to my mother. Had it been the same doctor as last time I would have immediately organised a transfer to a new and different team - don't be afraid to ask for change, public hospitals are run by our tax dollars and we do have options. My next action was to hand the ward clerk a certified copy of the EG and EPoA paperwork for my mother so the ward clerk can take a copy to put into the file on my mother's bed which all the medical staff have access to. I strongly recommend you all to follow this protocol, it will save a good deal of time and energy; hospital staff like knowing what the legal position is of a patient, who the responsible person is, and therefore how the information will transfer. The social benefit too, is that this process makes the nurse's job easier; the nurses work incredibly hard as it is, and nurses anywhere are not paid nearly enough so anything to streamline their workload is a boon. In addition, Responsible Persons who are well-informed about the medical and personal history of a patient can also help to catch details of a symptom presentation that may not be identified quickly without the extra information an EG can offer. Remember too, when dementia of any kind is present, the person you are responsible for - in this case, my mother - may genuinely not remember what has happened or what their history is. Responsible EG persons fill in the gaps and offer important context as well as detail. This is where thorough and rigorous conversations and note-taking are incredibly helpful. The more you do now, when everyone is healthy and fully aware of what is going on, the more effective the treatment and diagnosis options will be when illness or injury happen.
Had we not put the paperwork in place, my mother would have no advocate of authority, we would not necessarily have complete and rapid information transfer from the doctor/s involved, and the medical history for my mother would be patchy in places.
The honest pluses and minuses of being the Responsible Person...
Obviously there are upsides to being the Responsible Person - I am able to offer a good deal of input and know what everyone's schedules are, which makes coordination simpler. However, I notice that more and more these days I need to try and work my own activities and workload around hospital visits, phone calls, and inter-personal negotiations. This last is often related to transferring information between family members, however sometimes this is also a requirement of working with support service agencies and their contractors. When mum comes home from the hospital there will be a Transpack in place, where a service provider will have staff come in for personal care, and this system is particularly helpful for older people with dementia returning home as there is a good deal of high-level support and care for the transition. From a carer's perspective this system is good too, because some of the burden of high-demand care is lifted from their shoulders. We are grateful, given my mother's diagnosis (which we are all trying to come to terms with), that a Transpack is possible. Had my mother's presentation and cognitive ability been worse then we would not be eligible for Transpack care at all, so private care would be the only remaining option.
To be perfectly frank with you Gentle Reader, one of the more difficult aspects of this entire medical diagnosis journey with my mother over the past few months has been the paucity of time which I have had to process my own personal responses. I 'know' a good deal about different forms of dementia, and how the family often reacts. I also 'know' intellectually that my mother is at end of life, and while not immanently dying memory loss is inexorable and she will not regain lost ground now. However, 'knowing' and experiencing are entirely different bags of ferrets... Fortunately, I also have decades of experience working with PTSD, trauma recovery across the life course, grief, loss, and the unexpected. So, even though there were times this week when I really just wanted to go off by myself to cry and process - being the Responsible Person meant that every day I put on a hat and kept going, because decisions cannot be put off regarding future care plans and I have enough resiliency and life experience to compartmentalise my self-care needs. This does not mean I ignore my own needs, in fact quite the contrary - I have weekly peer exchange sessions with a trauma recovery colleague who is invaluable in terms of supporting me and helping me to process my own responses and feelings. I have end of life doula colleagues who I stay in touch with and ask to help me out from time to time when I feel in need of support, and I have good friends who help me to laugh and live in the moment. Healthy self-care matters, and I cannot emphasise enough that asking for help is not a weakness, nor is it a sign of personal failure. Part of the reason I have the resilience I do is because I do know that I need support in order to wear my hats appropriately for my mother.
I am spending a good deal of time with my mother in the hospital every day as we sent the full-time carer away for a much-needed holiday while our mother is in the hospital. I know that erosion of memory and self is happening for my mother every day, and while a part of me would like to be able to grieve the loss that Alzheimer's has wrought, I am aware that my Responsible Person hat is forcing me to focus on quality time with my mother. Because, regardless of my own personal emotions, we do have this time together now. Currently my mother has a new interest in colouring books, so I spend some time each day quietly colouring in and enjoying smiling with her as we admire her use of colour and handiwork. This may seem a small and inconsequential use of my time from an outsider's perspective, but for me this is irreplaceable time; we are on the Alzheimer's unpredictable clock now, so every moment is a precious one.
Reflecting on my hats and advanced Alzheimer's
On good days I can do my own work, then don the relevant hat for my mother's needs and do things at my own pace and in my own time. On less good days I may need to change hats rapidly and unexpectedly, and my not get around to my own work at all. While not begrudging my responsibilities - even when they do take up time I had thought to organise differently - it can be very challenging because some days I need to change multiple hats and function quite quickly. Frequently I need to operate on different levels simultaneously, and in spaces that overlap or intersect the deeply personal. I am, therefore, incredibly thankful for all the advance planning conversations my mother and I have had over the years as this enables me to be absolutely secure and unquestioning in the decisions I take and the boundaries I hold on her behalf. Sometimes these boundaries need to be held with siblings - and this is generally the most difficult aspect of being a hat-wearer that I can think of. One of my siblings, for example, wants to be privy to our mother's banking history and current net worth - my solution is to have discussions in public/neutral spaces and to remain quiet rather than argue with their control issues. As I am not able to change my sibling's mind or understanding of how inappropriate it would be for me to divulge that information (EPoAs have a legal duty of care concerning confidentiality), I choose to not argue or engage at all. This tactic is not always easy, but when I offer nothing to push back against the drama and shouting is minimised, and I am not interested in fostering other people's tragedy porn. To be honest, I simply don't have the energy, let alone the interest, right now. In a weird way, the hats help me to maintain some distance in instances like this, and also to remember that my mother's comfort is my overwhelming priority - this too, is something to be grateful for.
In the end, in the midst of all the uncertainty of dementia and hospitalisations, I am grateful for several other things in my life. I have a supportive spouse who gives me space and hugs without expecting words when I am feeling sad. I have very good friends. I have supportive colleagues in academia and end of life arenas around the world - and well-wishing sometimes arrives as DMs, unexpected and loving text messages, and phone calls. Cully always ensures I get up and move regularly, and works hard to keep my spirits on the bright side. My mother still knows who I am, and is happy to see me when I come to visit. I have a good deal of professional, personal, and life experience to call on, so even when I think things are a bit shite, I still have more positives than negatives in my overall life scales. I count myself indeed fortunate for all my support networks, as my hats could arguably weigh far more heavily on my head than they otherwise do. In short, things could be far worse.
If you would like to talk to me about advance planning and how it can save time and money, especially with a dementia diagnosis please email firstname.lastname@example.org for an appointment. Let's talk.