After the death, the guilt remains
My name is Elfriede Sangkuhl. I am a reasonably competent, middle-aged, middle-class woman who cares.
This is my story, of someone who cares, and has cared for someone with dementia: Marie Karoline Sophie Wilhelmina Sangkuhl, geborne Wietelmann.
In February of 2010 my mother, at the age of 84, suffered a catastrophic stroke. She didn’t die, but was left severely brain damaged. Her death occurred fours year later. When it came I could only feel relief that this useless waiting for death, which Mother endured for four long years, was over.
But I was also left with an overwhelming sense of failure. Failure to know what was in store, failure to properly care for her, and failure as a daughter.
My mother was a giant of a mother packed into a 5 foot 2 inch package. She was fiercely protective of her family: witty, wordy and with a wicked sense of fun. Then, from one day to the next, it was gone. Not all of it – but it was the brutal start to an inexorable decline.
At the hospital, Katoomba Hospital, the staff was caring but not very informative. For example, we – my siblings and I – were advised that they would not operate to relieve the pressure on Mum’s brain because of her age and the real risk of her dying from the procedure. Of course, with the benefit of hindsight, I would have insisted on the operation. Far better to give my Mother a chance at continuing her life than the hideous slow decline she endured. Also, had she died from the operation, it would have been my Mother who died. Instead, a woman who, eerily, had echoes of my mother in her emaciated frame, the snowy hair, the beautiful smile, died after four needless years of a miserable existence.
In those first few days at the hospital, Mother had another serious stroke. We didn’t know it was a stroke and called for help. All the available medical resources were employed to keep Mum alive. We were horrified. Horrified that we’d asked for help, instead of just holding her hand and letting her go. And, horrified that despite a DNR (Do not resuscitate) order she was resuscitated. We didn’t know that when a person can no longer make a decision the DNR doesn’t count and the staff have to do what they can to prolong life.
Well, her life was saved and now the bed was needed.
Mum was, literally, placed in a ward in a cellar, where those chronically unwell old people, who didn’t die quickly enough for the hospital administrators, were placed before being shipped home or to a nursing home.
A social worker came to rescue us – ‘us’ being Mum’s four surviving children.
We took advice from the social worker. The advice we acted on included:
To question the doctors about the prognosis
The prognosis was that Mum would bounce back, but not to her previous level. Then, Mum would decline gain, bounce back, but to an even lower level. And this pattern would continue till she died.This was an accurate description of what actually happened. We did not have this information when the decision was taken by the hospital doctors to not operate on our mother.
Hold a family conference
At the conference, we siblings had to decide on whether we could care for Mum at home or whether we should commit Mum to a nursing home. This was agonising. Home was examined to see how it could be kitted out and altered for full time care. The only person with no family, me, had to decide whether I could do the caring. Then I faced the realisation that I didn’t know how long I would be caring for Mum and whether the caring was only delaying the moment when Mum would need to go to a nursing home anyway. It was the most difficult decision of my life.
Look at nursing homes
We decided to try and find a nursing home near where my brothers lived in Sydney. It took time and it was depressing. But luckily(?) we found a nursing home, one that was not smelly, near my home. By that time the Hospital was pressuring the family to make a decision, so that we would take Mum out of the hospital.
The social worker, bless her, told us just to ignore the pressure. We did.
A Visitor Register
Set up a visitor register and post it on the wall near Mum’s bed.
This was such good advice. My brothers and I organised a roster which meant that Mum had a visitor every day. We each went on every third day. We wrote our name on the register. The advantages of this were that the nursing home staff knew that Mum had visitors. It also meant that ‘little’ problems stayed little – if we noticed anything amiss, we could bring it up straight away. I believe that this is one of the reasons Mum got the splendid care (under the circumstances of an underfunded nursing home) she got. The other advantage was that we siblings shared the load and didn’t become resentful of each other. It also meant that we could go on holidays knowing Mum was still being visited.
The only practical advice we got was from that wonderful social worker.
Then, the four years of decline. Far too painful.
Then, Mum’s death, from pneumonia and starvation.
Then, the guilt.