This recent era of distance-keeping has led me to consider, as a daughter of someone who had dementia, as a doctor, as a human being, that of course we must stem the tide of this horrendous virus – but we must also beware of cutting off something as fundamental as life itself.
It is our ability to feel and think and relate and connect with another human being... The power of touch.
It made me think about waiting for the ambulance to bring my mother to a nursing home.
It was a decision which came after many years of illness and efforts of my sister and I to look after two parents with multiple illnesses. One was in hospital more often than not, in recent years, due to physical problems, multiple heart attacks, seizures etc. The other was his beloved wife, who had developed symptoms which we later found out were part and parcel of a dementia. In her case, periods of obsessionality, obsessional thinking and images of great distress to her, paranoia that had never been there before, distrust at times, rage and anger neither had been there before. The forgetfulness. The disorientation. The changing of night into day, and day into night. The wandering at night. Her frustration at trying to communicate. The relentless anxiety.
The one weekend myself and my sister happened to leave the country – the only time we were both away at the same time in years – that very night, my elderly father woke to find his wife had risen from the bed and had fallen against the sink in the corner of the room. Splitting her skull wide open.
Falling and vulnerability
He, with his multiple heart attacks, looking at the open skull, and the bleeding, bringing her to the nearby hospital, driving in his car, that normally went at 30 miles an hour, focused and with speed following the ambulance which carried her. How he didn’t have another heart attack that night I do not know. Certainly, the image of her falling and her vulnerability and the bleeding did not leave him and led to the decision which we had all been avoiding for a long time.
It had come to the point when our multiple attempts at providing full-time care, and our many attempts at additional home help, our attempts at trying to manage things, were failing more and more. The strain on my father was evident, and the worry that Mum was not being helped as she needed grew. He wanted to look after her himself. After all, he had gone against his particular background, Catholic, rural, in marrying a beauty queen who was musical, romantic, artistic and from a family of immigrant orthodox Jews. The life they forged together was one that he was deeply at one with, not only connected. But he wanted to protect her forever. Eventually, a very kind geriatrician said to us “Your dad will be dead if you keep this up, if you keep trying at home. Your mother needs 24-hour physical care to attend to her everyday needs.” (These arose from her repeated kidney infections, incontinence problems, an unsuccessful hip operation which meant she could not walk and so many more things, and a depression that was the cruellest of all.) And so because it was better for her as outlined by the geriatrician in such a skilful way, where all of us had failed before, he also had come to this point. A nursing home.
Wandering residents
Having visited so many places, trying to get the feel of them – the ones that seemed to be pristine, and clean, everything was on the button and everything was on the hour, your cup of tea was at half past four, not before and not after; and the ones where it was too lax, the sight of somebody wandering around and saying ‘isn’t it great how easy going we are here?’, with bits of food lying around and the not-so-hygienic feel – I was left devastated at the thought that my mother could also be one of these wandering residents.
We finally found a nursing home, due to a personal recommendation, as the woman in charge had what was truly a calling to be kind and engaged and loving and human to people who were entrusted to their care.
A nursing home is not a hospital.
It is not a residence.
It is an extension of your own family home . . . where you entrust your loved one to a home. It must be somewhat homely. Yes, the hygiene was good, yes the food was good, but more importantly, we could visit any time. My father could go every day, and even at Christmas, if she could not come to us, then he could spend Christmas dinner with them. We were welcomed.
But I digress.
The first day she arrived at the nursing home, we came from a general acute hospital due to a fall Mum had two weeks earlier and a delirium, which is a confusional state, all of which had taken some time for my mother to recover from.
We waited for hours for the ambulance that was transferring her to the nursing home. We had spent time explaining to all teams her tendency to panic thus the timely and orderly transfer was important. Her understanding was that she would go to this place for further rest and help. But how much she took in I do not know. An hour went by and another hour and another hour. There were more important and more urgent and more necessary cases. The ambulance came some nine hours later than it had been booked for. By that time, my mother was very anxious.
Screaming and shouting
When we arrived at the nursing home, our plans to talk to the staff and to know who would be there and who would welcome her were all affected by the delay. She was now met by the night shift and by somebody who we later heard was only there as a stand-in for a week. That person was nervous, wondering who this lady was and how she would be. It was so late. Before we knew it, she was bundled upstairs and out of her clothes and into her night dress. All of this terrified her. She started to scream and shout and get agitated. I insisted in going into the room, as she was beside herself with agitation. The hospital had told us that she could have a sedative which they gave her and then she needed an injection which they also gave her.
It was utterly distressing for her and utterly distressing to witness.
My sister and myself were beside ourselves with helplessness and sadness. We didn’t know what to do. Our father had just come out of coronary care from yet another heart attack. We had hoped to save him the worry, telling him how nice the place was, how welcoming the staff were, and how they were prepared. Nobody in this group seemed at that time to be prepared, and I suppose, how could they? We said she was a lovely lady who wanted her own way at times (don’t we all?) but was charming and fun, and loved a bit of chat. As her care plan later said, her “likes” were “men and chocolates”. Long live us women! She was screaming and scratching. I said to my sister, “There is nothing for it, I am going to have to get dad.”
I went and got my father complete with his recently inserted pacemaker, and he came up the stairs coughing, to the top room where she was in that distressed state. He went over to her, not glancing at anyone around, all six foot of him, and calmly and lovingly kissed her on the lips. With that, she became completely tranquil. He placed her head gently back on the pillow, pulled up the sheets, tucked them under her chin, kissed her on the forehead, and said “Now don’t worry. Sleep, rest and I will be here in the morning.”
She slept the whole night through.
‘Years of practice’
Amazed at how quickly this worked and how beautifully intimate that moment was, I thought about how my parents were very united but not ones for external shows of affection. This tender kiss was something of a special moment between the two. I said to my father “Dad how did you do that?” and he smiled with that characteristic humorous smile, in a quiet way that I noted many men of the same county (Kerry) have, and said “Years of practice, years of practice”. I drove him home, and he also slept soundly. He then proceeded to visit her day by day, for hours, and she always knew him, enjoyed his company, and they deeply stayed connected until the day he died years later. He predeceased her.
Myself and my sister – who no longer had the frequent emergencies of two parents going into hospital at different times, or at the same time, with all the ensuing interactions and agitations and two hugely different major care needs – were also somehow reunited with the emotional connection with our parents. We sat with my mother, spending time, knowing that the things that we had done willingly, but not so well – like incontinence care, the mobility aids, the contractures – all of these things could be looked after so well by the care staff and they were caring. The kind carer who brought her back rosary beads from the Philippines. The lovely Portuguese nurse who worried because he forgot to bring her back chocolate, and ran out to the shop the first day he was back from holidays to get it and gave it to her.
When she did die, they were crying as much as we were, coming in and out holding a vigil with us, through the night; giving us their sympathies and condolences and us to them; united, because we had provided “home” together for her.
In a Covid-19 world, where we keep our distance, we could not have brought our vulnerable father in to our mother. He could not have kissed her through PPE gear and a mask. What agony and what mental torture she would have had, having to be without that connection, that human touch again with the man who she had been married to for 50 years.
