EVERY Friday morning, I get into my car and drive about 30 miles to collect my friend Anne. She is usually waiting for me, handbag and blue disabled car-badge in hand, ready to go.
I arrive after 10 a.m. because that’s when her husband, Peter, is collected by the minibus that takes him to the day centre, where he and a handful of others with dementia will be looked after by staff and volunteers. Peter doesn’t particularly want to go, but he knows that this gives Anne a brief respite from constant surveillance and care; and a little time to restore her perspective. Every week she tells me, “You don’t know how much this means to me.”
Like many older caregivers, Anne has health problems, too. She has been fitted with a heart pacemaker to correct an irregular rhythm, takes steroids for polymyalgia, and has osteoporosis in her spine which makes her unsteady on her feet (hence the blue disabled badge for the car).
The day centre provides more than lunch and company: through different activities, carers aim to deliver cognitive stimulation that might help to slow the dementia progression. Anne has given them a map circled with the countries that Peter has visited in his long Christian ministry, and suggested that they ask him to talk about those places and his work.
For he doesn’t play games or do art and crafts; his whole adult life has been about people, both his family and friends, and as an evangelist and pastor. He once was pastor to the biggest church in a large northern city that attracted many young people, and has been a spiritual father to hundreds.
He is so much a “people person” that Anne and I wonder whether he was one of the victims of the Covid lockdown that we’d read about. Deprived of the human contact that was his life, he slowly sank into himself, and the vascular insufficiency he’d been struggling with seemed to take over.
A FEW months before lockdown ended, he was diagnosed with a mixture of vascular dementia and Alzheimer’s. Now, Peter has become a statistic, one of the 517,412 diagnoses in the UK reported by Alzheimer’s Research UK, and Anne, his wife of 61 years, has become an”‘informal carer”.
Their local social services have been able to arrange a carer one day a week, and the day centre on Friday. Anne knows that, as the dementia advances, they will need residential care, although sometimes I wonder whether, with her poor health, they will “go home” together — which would be a blessing, although there would be a big hole in friends and families’ hearts.
Also, I wonder what Peter could have done differently to prevent the dementia. He never smoked; they had a healthy diet, with only the occasional glass of wine; loved reading and long walks; and were well connected to their large family and their many friends. They are not given to anxiety or stress or any mental-health issues, and have good education levels. All these are known preventative measures.
But Peter did have cardio-vascular problems: he’d had two TIAs (transient ischemic attacks, mini-strokes) some ten years earlier, and took medication to thin the blood and control high blood pressure. Perhaps research will discover better ways of dealing with cardiovascular disorders in future.
At present, there are two research paths; one into social and health-care interventions, which have reduced the rate of new cases of Alzheimer’s by 16 per cent over the past 20 years; and one into a pharmaceuticals cure, which has a fail rate through the 21st century of 100 per cent, producing only drugs that modify symptoms for a while. So, it was good to read mention of “new hypotheses” in the Government’s press release (14 August 2022) about doubling funding to £160 million by 2024 into dementia research.
In the mean time, there needs to be more practical support for people like my friend Anne. The NHS estimates that there are 540,000 informal caregivers like her; but there are not enough carers, and not enough money in the social-care system; so they struggle on, some developing health issues and even dementia themselves.
Many churches are doing excellent work in supporting “their” family caregivers, and one pastor told me that, if the Government allocated funds to churches, they would be able to do outstanding work in their communities. They would also take the spiritual support that is so essential for believers.
Anne and Peter are blessed by helpful neighbours in their upmarket apartment block, and one in particular is “like a daughter” to them, collecting shopping and bringing meals and always being available. Anne says that there aren’t the words to describe how grateful they are.
But it’s our Christian chatter through WhatsApp in the week, and our meanders on a Friday that buoy Anne’s spirit (and mine). Over lunch, we talk about the real life that is to come, with all our loved ones, and, above all, in the presence of Jesus. We wonder whether there will be coffee in heaven, and what sort of conversations we will have with our loved ones. “It’s our hope of glory,” Anne says. “It holds us up whatever our circumstances in this life.”
THIS Friday, we are off to the garden centre, where we’ll walk through the plants to the restaurant, thanking God for his creation and for his goodness to us.
Recently, she has had two falls that portend worsening health; so I mentioned the promise in Psalm 143 that we would spend eternity praising the Lord and dancing before him. We cannot deny that both her and Peter’s condition will worsen, but, instead of letting her mind dwell on that, she lifts her heart to the real life in heaven, where they will both be perfect.
Listening to dementia caregivers after a talk at New Horizon, in Northern Ireland, in August, I heard the same needs expressed in different ways, for practical and spiritual support. I heard, too, how some feel deserted (even in congenial Ireland) because friends and family avoid them, not knowing what to do or say. But it isn’t rocket science, and you don’t need special training. For the caregivers you know, just go and be there for them, and God will give you the words to say.
Louise Morse is a cognitive behavioural therapist, author, speaker, and specialist in dementia and issues of old age who works for and writes for Pilgrims’ Friend Society.
Her Master’s degree examined the effects of dementia on family members. She has been following news and research for more than 20 years, and has published five books on dementia (published by Lion Monarch and SPCK).
World Alzheimer’s Day, part of World Alzheimer’s Month, is today (21 September). More information here.