I have been in hospital chaplaincy for eight years in south Wales, six years in East Anglia, twelve years in Leicester. The greatest suffering I have seen over those many years is Dementia/Alzheimer’s (D/A), the burden borne by loving families and carers. The terrible switches in mood, the confused vicious and spiteful words of those who are ill listened to by people who love them.
Two sisters had a mother who needed to be looked after. The one refused absolutely, saying she could not bear to live with her mother. She would visit every month. No more. In those monthly visits the mother would grumble about the daughter looking after her to the ‘lovely’ daughter who came to visit her. It was hard for the care-giver sister to take. When she begged her sister to look after the mother for a week or two so that she could have a holiday with her family she was told to pay to put the mother in a home out of the care allowance that she received.
I have sat with family when the D/A sufferers have formed new relationships. The husband or wife has to watch the spouse holding hands lovingly with someone else, knowing they have no place now in the memory of someone they still love but who does not even know who they are. They have told me of the loneliness of going home when the warmth of memories become cold, sad and painful.
Children are affected in various ways, finding their loyalties divided, even siding with one parent or the other and remembering moments in previous years which suddenly are recalled. Children remember not being favoured more easily than being a favourite and old jealousies can come alive. What bitterness might be in the earlier years that was not resolved, resentments were buried, but are suddenly brought alive in hurtful shouting and sneering insults, daughters confused with mothers and sons with fathers, even grandchildren disliked because they remind the D/A sufferer of another family member whose place in resentment they discover they have been given.
Ignorant and arrogant people pride themselves on knowing more than caring family or experienced care-givers. They take at face value what the D/A person says, give credence to delusions and say “There is nothing wrong with you” which causes tensions in the day-by-day burden of care and mood swings.
Suffering is hard to witness but good nurses and doctors taught me by their example. Every patient receives full attention but must give way to the next patient who will also receive full attention. To move from someone making a recovery to someone almost certain to die is the day-to-day in dedicated nursing. The work on the ward round is to reassure every patient “We are here for you and you must allow us to be equally here for everyone else.” I was grateful for learning from such wise and caring staff. I asked one doctor what he felt about being a doctor. “Grateful,” he said, “that I can help bring healing.” That was a perfect answer.
To help make life worth living is a privilege all of us can share by acts and words of kindness and gentle silences. But it costs. The rejection by loved ones, unable to remember anything good about you, can cause great loneliness. Care for the carers is our duty: help and appreciation they need, not criticism.
We pray for all carers but especially for those hurt by the D/A sufferers and those who think they know better.
God bless us with understanding and gratitude for those who care with love,
(21st May 2023)