Nearing the end
Psychologists love naming the conditions they encounter and the types of clients they meet - and those of us who are also grief counselors are no different. There are over a dozen recognized categories of grief, ranging from “classic” to “complicated” and from “disenfranchised” to “delayed”. One of the categories that has received a lot of attention is called “anticipatory” grief, and if you’ve heard of the “Five Stages of Grief”, this is where it comes from. Originally, Dr Elisabeth Kubler-Ross was working with terminally ill patients at the University of Chicago Pritzker School of Medicine, and the now ubiquitous five stages that she came up with – denial, anger, bargaining, depression, and acceptance – related not to grieving relatives, but to the dying patients themselves, and their attitudes to their own demise. But the book she published on her research in 1969 entitled “On Death and Dying” became an international best-seller and we have her to thank for bringing the important and multifaceted topic of grief further into public view, even if it was based on the rather specific category of the terminally ill patient.
Over time, the term “anticipatory Grief” began to include the caregivers, and a new term – “preparatory grief” was introduced to describe the patient’s feelings about their own situation. Today, both terms are used almost interchangeably, which can be confusing, but the reality is that the two categories of client – the dying patient and the attendant care givers – have different needs and require a different approach from their grief counselor. For both categories, the situation would appear to be similar: death is coming, and everybody knows it, but it’s unclear exactly when and how it will occur. But while their death will be an “end” for the patient, in many ways it is a “beginning” for the care-givers. The beginning of a life without the deceased loved one.
On the one hand, for the grief counselor, there is the profoundly sick person who is coming to terms with their own mortality. Some are scared and apprehensive, others are looking forward to the time when the pain and discomfort will be over. Some worry about the loved ones hovering around them, others withdraw into their own private world. And for those suffering from one of the many dementias, reality is becoming a less and less relevant concept, peopled as it is by strangers and ghosts, briefly illuminated by shards of memory.
On the other hand, there are the caregivers – spouses, sons, daughters, parents, siblings and friends – for whom the situation is agonizingly real. Their loved one is deteriorating in front of them, as bodily system after bodily system begins to malfunction and fail. It is often not a pretty sight, and invariably causes distress and despair. Slowly helplessness is overtaken by hopelessness.
It's a process that can take weeks or months to evolve from the patient being “very ill” to them “actively dying”, and for most of that time the emphasis is on them, the patient. Are they pain free? Are they comfortable in their surroundings? Are they coherent and aware? Are they feeling depressed or distressed?
But once the patient enters into that “actively dying” phase, usually a few days or a week before they take their last breath, I have found that it is the care-givers that need the services of a grief counselor more even than the patient. There’s little, if anything, that can be done for the patient, other than to ensure that they are comfortable and pain-free. The care-givers however now need to be helped to understand that what they are witnessing is real and irreversible. For the patient, there is no “next week”. No “next Christmas”. No “next Thanksgiving”. No “next anything”. But for the care-givers those milestones will arrive, but the soon-to-be-deceased won’t be there with them. It is a critical time for the care-givers to connect with the dying loved one – and to connect with each other. This is a time when family bonds can be strengthened or, in some cases, re-established. A time for goodbyes with family and friends.
A few years ago, one terminally-ill client asked her son to review her Christmas card list, in order to identify which family members and close friends should be invited to come and say goodbye. He created an excel schedule, with the most distant family and friends first and the more local ones last, extending over eight days. They all came, in order, on time, and were given the gentle but firm notification that this was a time for “goodbye”, not “get well soon” or “au revoir”. There would be no “revoir”. They were followed by her lawyer and accountant, who finished their work on a Friday. With nothing left to attend to, she died two days later on the following Sunday, in her own bed, with her son, daughter in law and best friend from their school days in attendance. A good death.
The daughters of another client asked me to counsel their father, who was having a very hard time dealing with the imminent death – from dementia - of his wife of forty-six years. She had become unresponsive to everyone but him, and then only sporadically. He cycled through desperation, frustration, anger and heartache, reproaching himself for wishing it would all end soon. It’s a common phenomenon, and after his wife died many of the subsequent counseling sessions were taken up with those feelings of anger and guilt. At his daughters’ request I continued to see their father for many months and slowly his acute grief began to transition into integrated grief. He’s now back on his feet, emotionally, and has taken comfort – as many clients do - from Elisabeth Kubler-Ross’ prescient quote ……
"The reality is that you will grieve forever. You will not ‘get over’ the loss of a loved one; you will learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again but you will never be the same. Nor should you be the same, nor would you want to be."