Living with Alzheimer’s – a love story

By Robin Thomson

What is the most important thing we can do for the person living with Alzheimer’s, or other kinds of dementia? It’s easy to feel powerless or uncomfortable. ‘I don’t go to visit my grandmother in her care home,’ a young friend told me. ‘I don’t know how I can relate to her or help her.’

When my wife, Shoko, was diagnosed with Alzheimer’s in 2012, we had no clue what lay ahead. Later, when the disease really began to bite, we learned the hard way, as Shoko’s personality changed and she lost her capacity in many areas of life. Despite this her affection remained constant and it was a deeply spiritual journey. She died of heart failure in 2018.

Each person’s experience of dementia is different. But there are common questions. What can you do to help the person you are caring for and sustain yourself?

It is estimated that there are 850,000 people living with dementia in the UK, with 700,000 families providing an estimated £11.6bn worth of unpaid care. What resources are available to support this army of caregivers? They do it gladly but find it draining and sometimes overwhelming, as we did.

We received a lot of help, for which we were grateful. But we had to navigate our own way through systems that were not ‘joined up’.

Medical and social care

The first division was between medical and social care. Our medical team were kind, professional and always supportive. But when we asked about managing daily life, they pointed us elsewhere for social care.

Within social care we discovered a wide, and sometimes confusing, range of services on offer. It took a lot of work to find our way and there were times when we felt lost. Eventually we were put in touch with a team that gave us the right combination of medical excellence with personal and accessible care. This experience confirmed for me the vital place of a team like this, to enable people to go on living in the way that is best for them.

It also highlighted the support that family, friends and churches can give for those living with dementia and their caregivers.

Friends have a vital role. Caregivers can’t be left to respond by themselves. So friends need to be intentional in supporting them. They can give practical help across a range of areas, from food to financial matters, health issues, going for a walk, help with transport, and more. One of our friends turned up from time to time, bringing a complete meal which he left with us.

Friends give the gift of their time by keeping in touch, whether through visits or phone calls, letters or emails.

Don’t forget, stay away or give up

It isn’t always easy. Sometimes they may visit and find their old friend changed, perhaps not recognising them. Or even if she recognised them, she might not have engaged very much with them that day. If that is all that friends see, they may become discouraged and wonder if it is worthwhile to come again. But it is. It brings pleasure at the time, even if the person forgets soon after. And, crucially, it supports the caregivers too. If friends stop visiting, as sometimes happens when the dementia continues over a long period, the caregiver(s) can become isolated, especially if they have no other family.

Friends don’t forget. They don’t stay away. And they don’t give up.

What can churches do? Our local church supported us well. 9.30 on Sunday morning was a highlight of the week. Shoko might be struggling to find her glasses, looking through her handbag, trying to open the hymn book or Bible, not sure which was the right book. Sometimes she seemed sleepy. But she was always happy to be there and would greet our friends with a smile, whether she knew who they were or not.

People were kind and friendly, greeting us both with affection and warmth, talking to Shoko. It was an oasis for me as well: joining in the singing and prayers; listening to the Bible being taught with amazing relevance; being reassured by the concern of friends who understood something of our situation and were praying for us. Their practical support truly demonstrated the gospel and the support of a community of love and friendship – at a time when my faith was severely challenged.

At the same time I could see that many felt ill-equipped and unsure about how to relate to people living with dementia, and their families; what practical help they could offer; afraid, perhaps, of making mistakes.

Strange situations

Living with dementia, and caring for a person living with dementia, are strange situations. The disease may come in stages: sometimes not noticeable at all. There may still be a certain stigma to acknowledge it openly. At what point do we speak about it? There are no rules; like any relationship it needs our respect and sensitivity. But I believe we can be more open and intentional. When people clearly recognised our situation, and spoke to give support or ask how we were (and meaning it), I always found it encouraging, especially as they spoke to us both so warmly.

Practical help will depend on the situation. It isn’t always easy to ask for help, or, as mentioned, people may not be ready to acknowledge their situation. So it’s important for friends/the church to take some initiative and work out what they could do. Two actions that will almost certainly be welcome are organising a meal rota, as appropriate, and visiting at home. This could be to spend time with both, but it will often be most valuable to spend time with the person living with dementia, so that the caregiver can be free, perhaps to go out. It’s very common for the person living with dementia to be so dependent on them that they have little or no time for themselves. Giving them that time could be like gold.

Someone to talk to

Another important need for the caregiver is to have somebody they can talk to in confidence, to share their feelings and pray together. I met our vicar once every three weeks and it was a lifeline.

Some churches organise groups where people living with dementia and their carers can meet to talk, pray and sometimes worship together.

I have focussed here on the caregiver. The same principles apply for those living alone or in a care home. We can give them the same loving attention.

So what is the most important thing we can do? There are many practical things, as we have seen. But what I learned – rather slowly, rather late in the day – was that my most significant contribution was the way I related to Shoko.

‘Your body language is more important than what you say,’ our daughter told me many times, long before I understood it myself.

It was true. If the tone of my voice was impatient, or if I hustled Shoko to sit down, or get up, or go out, she found it distressing. Sometimes it made her cry. ‘Why are you so cross with me?’ But if I spoke softly, or held out an encouraging hand, the rewarding smile warmed me more than I deserved.

Of course, maintaining a loving relationship isn’t automatic. There is a lot to learn. But it’s not a technique, just friendliness and warmth.

Alzheimer’s and other forms of dementia can be fearsome and mysterious. But we don’t need to be afraid. The persons affected by them are still persons and we just go on relating with love and attention.

Robin Thomson

Robin Thomson is the author of Living with Alzheimer’s – a Love Story, published by Instant Apostle.

Photograph: Photo by David Matos on Unsplash