Between remembering and forgetting

Now for the helpful things about this book. One thing which would have been good to know before is that people with dementia live 'in the moment'. Hence the importance of visiting, even when it seems like a waste of time and energy. On reflection, this may seem pretty obvious, but I can't help thinking the quality of our visits to Auntie would have been higher if someone had explained things to us in this way, and emphasised what a positive thing it is. It's one of the things I will want to offer my congregation, many of whom faithfully visit old friends who are much changed by dementia.

The emotional difficulty relatives face is acknowledged by some of the contributors, and it was helpful, in that context, to read: "Treating people as people rather than objects is a profoundly spiritual task".

On spirituality, we noted that Auntie, a committed Christian, would respond to the reading of scripture, especially the Psalms. Of course, the Authorized Version was essential for this. She had been a speaker at women's meetings for decades, and one time we visited she was (without any acknowledgement of her visitors!) addressing such a gathering. This was one of her most lucid moments. Whatever one's cognitive ability, our relationship with God goes well beyond mere reason, and the book makes it clear we must not fall into the trap of thinking otherwise.

One contributor suggests a new way of seeing things: "By giving the gift of time and helping people to feel occupied, included, respected and loved, the Church has a very special ministry to offer those who have dementia." "Imagine a world where the local residential home or sheltered housing scheme was the hub of community activity in an area, with doors open to a variety of interesting experiences inside and outside the home - a place that people enjoy visiting rather than dread that they might end up there." I started reading the book looking for ways in which people with dementia might be most blessed through our acts of corporate worship, but have come to a point where I recognise we may do better the other way round, by partnering caring institutions in offering acts of worship accessible to people with dementia, and inviting the rest of the world to join in. But always the problem of time and resources! Meantime, people with dementia need to be loved and cherished by the congregation, and I wonder whether the mere practice of 'coming to church' can not in itself be a blessing.

I'll come back to this in a later post, but there are comments about making worship more accessible (colour and font sizes on service sheets; symbols and pictures to"amplify the purpose of the text"; audibility, etc) which have great value for many people with disabilities.

Finally, a quote which expresses the frustrations of many of the contributors, and which links two of my themes for this sabbatical. "What goes wrong, that we can no longer recognize our fellow humanity in a person with dementia? It is the same problem that used to blight the care of people with learning disabilities.... It is a valuing of people according to the functions of their brain, ignoring the rest of their personality."

Between remembering and forgetting: the spiritual dimensions of dementia, edited by James Woodward, is published by Mowbray. ISBN 978-1-4411-3114-0. Available from Amazon.

Two confessions and a whinge

Confession 1: One of the reasons for including dementia as one of my topics was my experience with visiting Tricia's aunt. When she died last year at the age of 95 she was in a nursing home, and had been in residential care for the last seven or eight years. Tricia had power of attorney, and we were her only regular visitors. Although never formally diagnosed with dementia, in the last four or five years Auntie displayed many of the symptoms. She had no idea who we were, was confused generally, and conversations were very difficult. I often felt the visits were a complete waste of time, and found it difficult to communicate with this person who wasn't the Auntie I knew. Often it was a real drag to even go in the first place. And yes, that did make me feel guilty, especially when I felt I was making things difficult for Tricia.

Confession 2: One of my responsibilities has been to conduct services about once a quarter at a local home. A new chaplain came, and made some excellent suggestions for making worship accessible to the residents, more and more of whom were dementia patients. The suggestions involved set liturgies and extensive use of the visual and tactile. He was absolutely right, but my main feeling was of relief that I would soon be retiring! It shames me to say it, but there's something of the old dog and new tricks about this.

Whinge: In my last post I mentioned the book I was looking forward to reading. Thus far it has been a disappointment. Written by health professionals (including chaplains), it seems to also be for health professionals. The only time a congregational or parish minister is mentioned is in an extended complaint by a chaplain who felt her mother was neglected by her church's Rector. Apparently regular visits by the parish pastoral team weren't enough. In my church are 9 people either diagnosed with dementia, or clearly at some stage in the process. I'm busy enough - an Anglican parish minister even more so, with a much wider range of responsibilities than any health service chaplain. Having said that, there is some justification in the complaint, but it has been galling (thus far) to find this as the only comment on the wider church.

However (always good to have a however after a whinge), I've just begun a section about helping people with dementia to worship. The context is separate services in day centres, hospitals and care homes, but there looks to be some help for those of us who are responsible for leading worship in a wider context, but whose congregations include people with dementia.

So the next post should be much more positive, and will include the good things I have found in the book. Hopefully I'll post in the next day or two.

More details

I said in my first post I'd let you have some more details about what I'm doing to achieve the purpose of the sabbatical. It happens that the first half will be concerned with people with learning disabilities and people with dementia. The second half will be to do with physical disabilities. That will involve visiting at least one church which has made major changes to its building with the aim of improving access; some reading; and reflection on what I have experienced and observed over the years.

In the first half I'm going to be spending time with people and local groups of Prospects. From their website http://www.prospects.org.uk/: Prospects is a dynamic Christian organisation working together with people with learning disabilities so they live life to the full. The plan is to visit a number of local groups, observe and talk to people. I'm especially interested in issues concerned with worship, communication, and spirituality.

Similarly, I have just started a book which I hope will enable me to explore similar issues in relation to people with dementia. The full title is "Between remembering and forgetting. The spiritual dimensions of dementia". The book is a collection of related essays edited by Canon James Woodward. A short comment in the Introduction will, I hope, give a picture of what is to come: 

The problem is not simply a malfunction in the person's brain, but a malfunction in the philosophy and understanding of society's understanding of personhood.

Hooray to that.

If you want to be a Facebook friend, I'll be posting there every time I publish a blog entry. Find me at https://www.facebook.com/profile.php?id=1486686681.

Wrestling with an angel

A Story of Love, Disability and the Lessons of Grace by Greg Lucas

- only available on Kindle in the UK.

The angel in question is the author's strong, severely disabled (and definitely less than angelic) teenage son. The wrestling is literal. The struggle to get his son out of bed (he's a teenager in this, if not in his mental capacity!), get the incontinence pad off him, clear up the mess and get him into a bath he doesn't want is graphically told.

How do the author and his wife cope? They don't, really, but they find evidence of the grace of God in all their suffering and trials, right from their first coming to faith: “When people ask me how I became a follower of Jesus, I always tell them that a two year old, non-verbal, mentally disabled, autistic boy led me straight to the cross and since then has been used to display God’s grace in the most amazing ways”.

The book is all about grace. Jake can never give any sign whether he's a follower of Jesus. But the author is aware that God's grace overwhelms any attempt we might make at defining who is or isn't a Christian. A short book, it is definitely not to be read at a single sitting. Emotionally draining without being remotely manipulative. For a more detailed review, with which I concur, see: http://www.thirstytheologian.com/2011/02/14/book_review_wrestling_with_an.php.

A frightening (how would I cope?) and encouraging (God's grace trumps my fears) start to the sabbatical.

What it's about

This will be a simple blog because I'm a simple blogger. During my sabbatical I'm looking at good practice in helping people with disabilities access Church in the fullest sense - buildings, people, the heart of the faith.

There are three areas in particular I shall be looking at:

• How we enable access to buildings for people with physical disabilities
• How we help people with learning difficulties to worship and draw closer to Jesus
• How we help people with dementia to worship and maintain/discover a relationship with Jesus.

Some of you will be concerned already about my use of language. There is no way to talk about these issues without either offending some or making others laugh with scorn at convoluted efforts to say the right thing. So may I make it clear that I agree with the trailers for the new BBC1 series on how people live full lives with their disabilities (Tuesdays, 10.35 pm) that we should be about removing limitations, focusing on abilities, and so on.

The sabbatical will involve reading, interviews, observation and visits. I shall also be doing a lot of reflecting on what I have observed over the years of both good and bad practice in the Church. I believe I'm at times going to find things uncomfortable, and will try to be honest about those times.

More detail on my plans soon. Meanwhile, let's get this posted and see if it actually works.