MANNA 89 Should Granny come to the Bar Mitzvah?
Written by Claire Hilton Tuesday, 20 December 2005
A member of our community recently asked if her mother should come to her son’s bar mitzvah. Her mother had advanced dementia, and was often restless. It is easy to imagine the family broigus this issue could cause. So on what basis can an informed decision be made, even though the outcome can not be guaranteed?
First we needed to talk about grandmother. Since, in dementia, behaviour patterns learnt in the most distant past are usually retained for longest, if she had been a life-long synagogue worshipper, had enjoyed services, and the music and liturgy, she might well find the service comforting and calming and would therefore be less likely to be restless on the day. In medico-legal decision making, the ‘best interests’ principle is used for those who lack the capacity to decide. Is it in everyone’s best interests to leave the grandmother out just in case she might behave inappropriately? What image of family cohesiveness and respect for older, less able people would this give the bar mitzvah boy? What pleasure might grandmother experience on the day which would be in her best interests? The principle of ‘substituted judgement’ is also often used in medical decision making. What would the person unable to make a decision about the course of action, have chosen in the past when they had been able to do so? Almost inevitably grandmother would have wanted to have attended the bar mitzvah. So her previous autonomy should be respected. If a befriender or carer, possibly from the synagogue care group, could sit near her and be available to take her out or follow her out if she wanders, that might also reassure the family. Such decision making also needs to be set in the context of Jewish teaching.
Ben Sirach (Ecclesiasticus) 3:13 states: And if his understanding fails him, be understanding of him, and do not dishonour him because you have your full strength.
And in Leviticus 19:32 It is written: You shall rise up before the hoary head and honour the face of the old. A person with dementia is due the same respect as someone one with unimpaired intellectual function.
Mental illness must not be seen in isolation, but viewed within the existing social and cultural milieu of the individual, their family and society. Mental illness is a reality for people of all age groups, and many different types affect older people, not just dementias. A huge effort is being made to promote understanding of mental illness and provide services within the Jewish community by Jewish Care, JAMI, the Jewish Association for the Mentally Ill, and other organisations.
Educational programmes are being organised, such as for volunteers within synagogues. But these tend to focus on needs such as communication in dementia and support for carers.
There is far less understanding of related cultural issues. Care of older people with mental illness may create cultural and religious dilemmas within available statutory health and social services. For example, seventy-two year old Mrs Y is the only Jewish client attending a local authority dementia day centre and enjoys concerts performed by local teenagers. But she has become distressed when Christmas carols are played — she was always exempt from school carol services in her teenage years, and avoided carols ever since. What should the day centre do for Mrs Y? Clearly they should have some knowledge of her religious-cultural background. But do they always ask? Or make the links? Sadly, I think not. Perhaps her synagogue, aware of her illness and attendance at the day centre, could be more proactive with Chanukkah activities at that time of year, as well as events meaningful to her at other times in the Jewish calendar.
Only last week I assessed at home a non-observant eighty-five year old widowed Jewish lady with dementia. Extremely lonely, she wanted additional support, possibly a day centre. She told me about her childhood in Belgium and her escape to England at the beginning of the War, then asked me if I was Jewish. When I replied that I was, she took me to her piano and played a piece of Yiddish music, asked me if I recognised it and if I knew the words. Her cultural Jewish identity was important to her, and it may be that a Jewish dementia day centre would be more appropriate for her than one serving the local wider population.
Only in recent years have health care staff begun to be more proactive in exploring spiritual aspects of life for people with dementia. The Christian Council on Ageing Dementia Group, established in 1990, has published booklets and guidelines on religion and spirituality in dementia. Daphne Wallace, a psychiatrist for older people, has written on spirituality in dementia, defining spirituality as ‘a search for that which gives meaning and identity to a person’s life and the wider world’. Its manifestation will be different for each individual, but it applies to all people regardless of their intellectual functioning. Dementia sufferers may have a different kind of awareness of the world. Those with poor short term memory may not remember details of recent events, but the emotional experience of meaningful activity can give a sense of calmness and pleasure well beyond the duration of the activities themselves.
The interface between dementia and religious practice may be important. Mr X needs a carer to help him lay tefillin each morning — is this appropriate? There are at least two aspects to Mr X’s tefillin ritual: the halakhic and the stability of a daily routine. Does he have an illness which impairs his intellectual function so much that he is classed as a shoteh, one of the groups of individuals exempt from carrying out time bound mitzvot? In this case, he would be exempt from laying tefillin. But even if he does not understand the meaning of his actions, if he finds that the repetitive ritual gives structure to his day it should be continued. It is well recognised that the routine of a meaningfully structured day may be helpful for a person with dementia. Incidentally, the word shoteh is derived from shatah, which denotes somebody whose mind wanders. Coincidentally, wandering in mind and body are not uncommon features of dementia.
On rare occasions the presentation of a dementia may be related to religious practice. Some time ago, a general practitioner referred a seventy-five year old man because he was becoming ‘more religious’ and this was disrupting his relationship with his wife on whom he was becoming increasingly dependant. On further discussion, he had taken to going to synagogue every Shabbat, and he thought she ought to go with him: no other aspect of his religious practice had changed. This single fixed change was becoming a bone of contention and conflict in the household, into which the local synagogue leadership were also being drawn. In dementia affecting the frontal lobes of the brain, people can become excessively rigid in their behaviour. An extensive neuro-psychology assessment confirmed this man’s diagnosis. Clear explanation and better understanding of the reasons for his behaviour go some way to help in such a situation and to enable family and community to stop criticising each other, which can become so destructive.
Another aspect of dementia which may specifically affect elderly Jewish patients relates to the way in which memory is lost. Typically, in Alzheimer’s disease, the commonest sort of dementia, short term memory is lost first and, as the disease progresses, memory recedes further and further until the sufferer may have memories of childhood far more vivid than more recent events. For those who suffered as a result of the Nazi regime, vivid distant experiences may cause distress to patient and carer. One recent patient with advanced dementia who had lived in the East End of London during the War, repeatedly recalled to her husband and daughter how the bomb destroying her house killed both her parents and all her siblings. The family had difficulty dealing with her repeated accounts, and became extremely distressed. But her distress could be relieved by being distracted from the subject onto tea and cake, or watering her African violets, and she would forget her recent preoccupations. For the family and patient, acknowledging her emotions but then distracting her from them became a constructive course of action to cope with the predicament.
This kind of impaired memory is different from older people with normal memory function who have time to reflect on their lives, for whom reminiscence of distressing events needs to be handled with appropriate support, possibly from a specialist agency such as Jewish Care’s Holocaust Survivors centre.
Working with many dedicated families who care for an older person with dementia is one of the most rewarding aspects of specialising in old age psychiatry. So often a spouse, who may not be in good physical health, cares for their partner with failing intellectual function. But the stresses of caring may be such that the carer may say that life is really not worth living. The Talmud states that divorce of a mentally frail wife is forbidden, in order that men do not consider a sick, helpless wife like a piece of ownerless property (Babylonian Talmud Yevamot 113b). For a husband with dementia, divorce would also not be possible because of difficulties of intellectual function (Babylonian Talmud Gittin 7:1). Whatever the reasons for couples remaining together in a caring relationship, life may be extremely stressful, and other family members may not live locally enough to offer support. Statutory services may provide day care, but frequently only on week days. What does your community offer to carer or dementia sufferer couples at weekends?
Dementia only affects a minority of older people, but this minority increases exponentially with age — five per cent at sixty-five years, 30 per cent at ninety years. With increasing longevity, proportionately more of the community will have dementia. This has huge long term implications for providing suitable Jewish religious and cultural care, particularly in ageing communities.
In a multicultural society we must not make assumptions about the interactions of religion and culture with dementia. We may need cultural and religious interpreters as well as language interpreters at times, and skills to ask about religious practice and spiritual needs. Health care staff are beginning to explore the religious and spiritual needs of their patients. Some dementia day centres include religious services in their programmes. Although those with dementia may not remember an event or activity, if it is meaningful to them they may feel calmer and more fulfilled in their lives. In addition to the standard medical history asked of patients and carers, mental health care workers need to begin to ask “What uplifts you? What makes you feel good and fulfilled in your life?” Within the Jewish community, there is considerable room for improving our understanding of dementia, and to look for novel ways to work with, and include in communal activities, both carers and those with declining intellectual function.
Further reading
Wallace D. “Spiritual aspects of dementia” in Practical management of dementia- a multi professional approach ed. S Curran, J Wattis. Radcliffe Medical Press: Oxford 2004 pp207-218
Collins K. “Care of the elderly” Le’ela September 1995 pp19-22
Christian Council on Ageing Dementia Group http://www.levesoncentre.org.uk (click on Resources, and then Dementia)
DR CLAIRE HILTON is a Consultant Psychiatrist for older people, Central and North West London Mental Health NHS Trust. She is married to Rabbi Dr Michael Hilton (who helped with this article) and has three school age sons.
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