She Still Knows Who I Am
I was inspired to write this diary entry after a telephone conversation with a very old friend, now 87 years of age. I began in my usual fashion by announcing that I had made a note in my diary to ring him up, annoy him and generally try to wind him up, although I have never been particularly successful in this endeavour. He took it in good part, as always, but the conversation soon turned to something considerably more serious.
His wife is now living in a care home, suffering from dementia. My friend visits her five days a week, having previously managed six. He told me that yesterday she had been unusually alert and wide awake, whereas today she was sleepy. Indeed, on most days she sleeps so much that there is little opportunity for conversation. Sometimes he stays for only fifteen minutes, but he considers even that short visit worthwhile.
I found this rather touching. There is something profoundly moving about an elderly man continuing to make the journey to see his wife, even when there is little prospect of an ordinary conversation. He believes that, somewhere beneath the surface, she is aware of his presence, even when apparently fast asleep. I suggested that there may be a connection between people which goes beyond the spoken word. I used the expression quantum entanglement, metaphorically rather than scientifically, to describe the bond between two people who have shared their lives. A familiar voice, a gentle touch or simply the presence of someone loved may offer reassurance, even when the person concerned cannot respond.
The most significant moment came when my friend said, almost in passing, “She still knows who I am.” I was delighted to hear this. It is one of those small mercies which might mean little to an outsider but everything to a husband who has spent so many years with his wife. He intends to continue visiting five times a week for as long as she recognises him.
Here lies one of the cruellest aspects of dementia. The person you love is still physically present, yet the familiar exchanges, shared jokes, recollections and countless little understandings accumulated over a lifetime may gradually disappear. A husband may sit beside his wife remembering everything they have experienced together, while she can recall very little of it. The marriage has not ended, but its everyday expression has changed beyond recognition.
There is a name for this experience: ambiguous loss. It describes the grief of losing aspects of someone who is still alive. Unlike bereavement, there is no definite moment of farewell. Instead, there are good days and bad days, moments of recognition followed by confusion or withdrawal. One can feel grateful for what remains while grieving for what has disappeared.
The unpredictability is another difficulty. One day the person may be alert and responsive; the next, sleepy and withdrawn. Such changes can be influenced by fatigue, medication, illness and the time of day. The visiting spouse never quite knows what to expect, and disappointment must sometimes be difficult to avoid.
Five visits a week represent a considerable commitment for anyone, let alone a man of 87. There is the journey, the preparation, the emotional adjustment before entering the care home and the return to an empty house afterwards. Fifteen minutes may sound a very short time, but the visit itself is only part of the experience. What matters is not necessarily the number of minutes spent beside the bed but the affection and consistency behind them.
There is also the question of guilt. Many husbands and wives feel they should visit more frequently, stay longer or somehow do more, even when they are already giving as much as they reasonably can. Yet nobody can remain constantly available without eventually becoming exhausted. A spouse is entitled to a life of his or her own, and maintaining that life is not a betrayal of the person receiving care.
My friend has health concerns of his own and is awaiting news about a possible operation. At 87, medical appointments and the prospect of surgery are substantial matters. He has reduced his visits from six days to five partly because of these additional demands. This seems entirely reasonable. He must look after himself if he is to remain capable of supporting his wife.
It raises a question which is easily overlooked: who looks after the person who is doing the visiting? Much attention is rightly given to the person with dementia, but the spouse who remains at home may be experiencing loneliness, anxiety and a profound change in identity. Meals are eaten alone, decisions once made jointly must now be taken by one person, and there may be nobody waiting at home with whom to discuss the day’s events.
There are practical ways of easing these difficulties. A visit need not involve continuous conversation. Sitting together, holding hands, listening to familiar music or looking at photographs may provide comfort when words are difficult. It may also be worth asking the care home whether there is a particular time of day when the person is more alert. Any sudden increase in sleepiness should be mentioned to the staff, since illness, dehydration or medication may sometimes be responsible.
Above all, visiting should remain a manageable expression of affection rather than an inflexible duty. If five days eventually become three, there should be no sense of failure. The quality of a marriage cannot be measured by attendance figures.
Friends have a responsibility here too. It is easy to ask how the person with dementia is getting on, but perhaps we should sometimes ask how the husband or wife is managing. Does the person have someone to talk to? Are they getting enough rest? Would they welcome a visit, a telephone call or an occasional outing? Organisations such as the Alzheimer’s Society and Age UK can offer practical advice, while carers’ groups provide opportunities to meet others facing similar difficulties.
I was also struck by the importance of allowing my friend to remain himself. He has not lost his sense of humour, his interest in current affairs or his ability to enjoy a good conversation. We wandered off into our usual subjects, exchanging opinions and indulging in the gentle banter which has always characterised our friendship. He is not simply the husband of a woman with dementia; he remains a person with his own interests, pleasures and considerable personality.
Towards the end of our conversation, I returned to the question of his wife. I suggested that whatever happens to memory or outward awareness, there is something about the essential dignity of a person which remains. I spoke of the integrity of the soul, reflecting my own spiritual understanding of human life. Dementia may affect recognition, language and behaviour, but I do not believe these losses diminish the fundamental worth of the person concerned.
I have promised my friend that the next time I am in his part of the country I shall visit him. We will undoubtedly put the world to rights and discuss the most profound matters in the universe. More importantly, we shall enjoy one another’s company. At his age, and indeed at mine, such friendships become increasingly precious.
After putting down the telephone, I reflected on the extraordinary devotion required of people in his position. There is no applause for visiting a wife who is asleep, no public recognition for sitting beside her for fifteen minutes. Yet there is something deeply human in turning up, again and again, simply because someone matters to you.
Perhaps love, in its later stages, is not always expressed through grand gestures or passionate declarations. Sometimes it consists of making the journey, sitting beside a familiar face, speaking a few gentle words and returning home, knowing that tomorrow or the day after you will do it all again.
And for the time being, his wife still knows who he is. I hope that recognition continues for as long as possible. But even if it eventually fades, the history they share will not cease to have existed, and his devotion will not become any less meaningful.
