Till death, or the nursing home, do us part?

published in The Hippocratic Post,
11 August 2016

link to The Hippocratic Post article

“For better, for worse, for richer, for poorer, in sickness and in health, till death us do part”. These are the promises made between a loving couple as they look ahead to a long and happy marriage. But will you really be together until one of you takes your final breath? According to the Office for National Statistics, 42 per cent of marriages ended in divorce in 2010.

For those who stay together, few can hope to pass away in each other’s arms as disease or frailty renders one of the couple confined to a hospital or nursing home bed. This is a sad fact of life, but should more be done to help couples spend their last days together? Having provided end of life care in hospitals and care homes, I have witnessed a husband or wife being forced to grieve prematurely for their loved one as circumstances force them apart.

An unequal frailty

I remember the day that Victor received his telegram from the Queen for his platinum wedding anniversary. Tears rolled down his cheeks as he clutched the card and wept for his wife. She was actually alive and less frail than him, but living in a separate wing of the nursing home. Victor was classed as having nursing needs whilst Dorothy, his wife, was classed as having residential needs as she was more able.

They had no children, and whenever an over-worked carer might attempt a reunion, toileting, mealtimes or a daytime nap would interfere. The management was asked whether they might have adjoining rooms; the couple’s differing level of need was cited as a reason why the couple, together for 70 years, were now unreconcilable.

The management says no

According to the Alzheimer’s Society, more than one third of people living with dementia have at times been aggressive, either physically or verbally, perhaps because of frustration, pain or even as a side effect of medication. In one care home, the wife of a resident with Alzheimer’s was advised not to visit her husband because he seemed to become particularly agitated in her company.

As nurses, however, we are taught ways to communicate with and interact with people with dementia in order to reassure, orient and calm them: music, reminiscence, listening and even hand massage may all help, though some cases are extremely hard to manage. Nurses can come alongside the married couple to help them learn a new way of interacting with each other: logical argument and reasoning often being replaced by an attempt to understand the perspective of the person with dementia. The visiting spouse will also learn not to take the aggression personally, especially if they interact with other families in the same situation.

A lack of resources

Some excellent care homes offer specialist dementia care, focussing particularly on challenging behaviour, but these are hard to find. Couples are sometimes separated by hundreds of miles as a husband or wife’s needs can no longer be met by local care homes.

Even when care can be found relatively close to home, an elderly spouse is sometimes no longer able to drive or to manage public transport, and local dial-a-ride services, once a lifeline to the elderly, are being reduced or removed due to funding cuts. Relatives can help, often juggling visits with commitments to family and work. Unbelievably, one ward sister refused admission to an elderly spouse brought in late one evening, as her visit fell outside visiting hours.

Overwhelmed by grief

It can be hard to watch your spouse receive intimate personal care from a team of strangers; accepting his or her disability or terminal diagnosis can be too much to bear. Sometimes it is easier to remember the husband or wife as they used to be, and not to visit. I have witnessed spouses at breaking point, yet a compassionate care team with time to look out for the visiting spouse as well as the resident can embolden and encourage. This, of course, can only happen in an NHS or care home which is not understaffed and which retains care and compassion at its centre rather than checklists and computers.

The perfect ending?

This really is possible, even when care is needed. Jeanette and Alexander Toczko, married for 75 years, died in each other’s arms at home, after Mr Toczko broke his hip and passed away in bed, with his wife’s health failing hours later. Meanwhile, Henry and Jeanette De Lange died twenty minutes apart in the same nursing home room after 63 years of marriage. These events happened in South Dakota and California – could they inspire nursing care in this country?