Saturday, July 23, 2011

In Hartpury with Arnold and Edna

We arrived yesterday in the small village of Hartpury, near Gloucester, where we are being wonderfully hosted by Rob Merchant, the rector of seven Anglican congregations in the area. This morning he took us to visit Arnold and Edna, a delightful couple who belong to one of the churches he serves. Arnold was diagnosed with dementia several years ago. He is a well-known and highly-regarded artist whose paintings carry a nostalgic appeal that has led to them being reproduced on biscuit tins and made into jigsaw puzzles. This is not meant pejoratively; his work is wonderfully constructed making fine use of color, and some of it is charmingly whimsical in a classic, Gil Elvgen pin-up style (always with Edna, a most attractive woman, as his model; she appears in some manner in all of his paintings).

Distressingly, the dementia has caused him to be unsatisfied with many of his paintings, and lately he has been "correcting" some of them by scraping portions off, leaving expanses of white where vibrant colors used to be. This creates an ethical dilemma for Edna. They are his works, after all--should he not be permitted to do with them as he wishes? But at the same time, can she allow the works which are the source of his considerable acclaim to be defaced, even by the artist husband she so dearly loves? She has tried to steer a middle course, hiding works she particularly values while grieving the manner in which he is damaging others in his restless dissatisfaction.

Even though his confusion is obvious, Arnold remains a witty and charming host. We had tea and cake (we have yet to enter an English home where we were not served tea) and then went from room to room to view his paintings.

Arnold and Edna regularly participate in numerous programs for persons with dementia and their carers. One is a Memory Cafe. A second is an art program in which they both paint. There is a "tea dance" once a month, and likewise a monthly dinner group that goes to a restaurant together. And then there is "Singing for the Brain,"a program that draws about fifty participants. They begin by singing one another's names, enjoy tea and biscuits, then sing beloved songs together. Arnold gets a great lift from these activities that stays with him for hours, even days.

Edna receives a "carer's allowance" from the government, and can use it to purchase three hours of respite care each week. A community psychiatric nurse who works with a consulting psychiatrist also visits both of them regularly in their home, and the psychiatrist comes to see Arnold in his own home. This is huge: Arnold does not have to contend with the anxiety or confusion that would come from traveling to an impersonal medical center.

Clearly the British government through the NHS has made a significant commitment to providing all that is necessary to keep persons with dementia in their own homes as long as possible. This means not just a much higher quality of life, but greatly reduced overall cost. People here refer to these programs as "social care." One can only scratch one's head and wonder why the American health care system has not yet discovered the obvious.

Recently there have been disturbing hints that Edna will not be able to maintain the present arrangement indefinitely. As is almost always the case, Arnold's dementia is progressing, and a point will likely come where Edna will not be able to provide for his needs at home. But further resources will be available to them to forestall that day for as long as possible. For example, Edna is still able to bathe him, but if a day comes when she can no longer do so she will be eligible for home health workers to do so. For the present they are able to share in a rich web of relationships and activities that greatly enhance the quality of life for both of them in their small, rural village. It is not always easy to be a carer, even under the best of circumstances. But we are impressed by, and envious of, the support Edna and so many like them are are receiving in the U.K.

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