When my Mother died in longterm care it was the first time for her – and for me.
There were no preparatory talks, no heads up, no conversations with the doctor, no one to take me aside and gently confide that the end was approaching. One might assume that in an institution of long-term care considered by many to be the last stop, staff would not be in a death denying state and would assist a resident’s family member by informing them and reaching out to make the impending reality easier to accept. But a death denying culture exists – even in longterm care.
I was confronted with the gravity of her situation when I visited on a mid Thursday afternoon to find her heavily medicated, unable to move and in what appeared to be mental distress.
Months earlier she had been diagnosed with a condition which would have required surgery and other medical interventions. As her family custodian, I had made the wrenching decision of not putting her through surgeries and after treatments given her age of 95 and her advanced dementia. Before I made that decision I had asked the doctor how it would all play out. He could not give me an answer but promised if my Mother were in any pain, they “would be all over it.” That didn’t happen.
Outrageously, her palliative care consisted of Tylenol.
Several times when I visited her for lunch I could see her steeling herself against some unknown torment. I then asked the doctor about stronger pain medications asking him to converse with my brother who was a dentist and more informed about pharmaceuticals. The recommendation was hydro morphone. Without further consultation with me a regime was begun on a Tuesday. My Mother was dead on Thursday.
When I entered her room that fateful day, her two private caregivers were in attendance, one weeping and the other angry. They protested she was being given too much medication, too frequently. My Mother had been taken off food and water for 2 days but as I approached her bed a tear ran out of her dehydrated body and down her cheek. She must have known, even through her dementia that she was leaving this life she had so loved.
I fled the room, literally running to the nursing station and called to speak with the doctor who never came to the phone and never, ever returned my call
That was followed by someone at the nursing station asking me, now in complete shock, if I had made final arrangements.
20 minutes later my Mother died. I was not there at her bedside but on the road home to make the recommended final arrangements. I got the call on my cell, pulled over and sobbed.
Can we in North America learn anything from other cultures when it comes to dealing with death?
Could there not have been a more compassionate approach to my Mother’s impending death other than denial and avoidance? Aside from the PSWs who approached me as I was clearing out my Mother’s room, no doctor or nurse took me aside to explain what had transpired. I had to ask. I had to ask as I was removing all her belongings and vacating her room within the 24 hour deadline. Are we a death avoidance, death denying culture? Even in longterm care? And how does that benefit anyone?
In these days of Covid -19 we often hear about the agony of being unable to say a final good-bye to a family member dying alone in hospital. I myself never knew a reality more painful than that of having to face the final moments of a loved one and being helpless to change that course. I experienced this with my Mother’s first time dying.
Am I but a coward? What do you actually say in those last moments?
As you stand there, feeling completely helpless, is that dying family member still hoping for a reprieve? Do they actually understand that they are leaving this earth? You confront the reality of mortality – theirs and yours at the same moment. Neither party is prepared for what is coming and to stare this in the face for the first time requires courage.
I so admire those who make a career of dealing with issues of life and death.
They are the realists, the helping professionals devoting their working lives to making things better for others and accepting when they can’t. How do they reach such a place of acceptance? I know death is a reality we must all face but bearing witness to its occurrence is/was unbearable. It was all too real. Too final. Too excruciating. And then just like that, life resumes. We wonder how life can continue after such loss. Why do the trains still run? How can it be that others are still enjoying life? Don’t they know?
If you are religious you are consoled in believing that souls live on in some version of heaven. If you are agnostic you simply cannot believe in the unknowable and are stranded somewhere between religion and atheism. If you are an atheist, things are so much simpler, it’s just game over and oblivion. You will be but a memory… there is no heaven or hell awaiting. Just lights out.
Apparently the West is one of the more predominant death denying/defying cultures
People go out of their way to beat back the hands of time: cosmetic surgery in order to feel and look younger, use of human growth hormone and all forms of exercise, some extreme, to fool our bodies into thinking our birthday was a decade later than the original.
And in longterm care facilities you see the same family custodial caregivers day in and day out. Although these custodians may come from a large family network, it is the same family members who confront the demise of their Mother or Father, usually alone because other family members practice denial and avoidance.
Then there are the death defying individuals in our North American culture: the brave and dare devil souls engaging in death defying sports like rock climbing, or scaling Mt Everest despite its hazards. They are not afraid but rather the immortal walking among us. Others skydive from airplanes in parachutes in order to get a rush, thus giving the finger to their own mortality.
There are the aggressive medical procedures and interventions in Western Society which when they do not deliver salvation from death, are seen as failures.
But back to Longterm Care with its apparent resistance to dealing with death, for those who are dying, and for those family members who are standing by trying to cope. What can be done to improve the situation for everyone? Most homes have a chaplin but I never met that person nor did one approach me. Although I am not a person of faith, my Mother was and a chaplin’s visit might have calmed her. Surely the administration could brief chaplins on imminent deaths and reach out to family who could choose whether or not to engage those services.
And what of the doctors, those gods of longerm care? Could they not improve their bedside manner and set aside time to speak with family members about the realities of the situation and make helpful, compassionate recommendations? It would have enabled me to cope so much better than I did, questioning whether I had made the right decision for my Mother given her dementia and the final outcome.
Was my experience unique or was it typical? I tend to assume the latter – which would be completely congruent with the way many seniors are treated in longterm care as well as in retirement residences today.