Death and Dementia

Christians right from the start have lived in the expectation that Jesus might return in the next five minutes, and so death may not be an issue. That is not the reason we rarely talk about death, but Christians probably ought to be at the forefront of helping our society have a conversation about death. This includes the perceived death of the personality in dementia:

Professor Elizabeth Mackinlay is a nurse and an Anglican priest in Australia. In her book Palliative Care, Ageing and Spirituality she writes:

“Fear of dying is one of the greater fears for humans … Most people are less afraid of death than they are of the process of dying…. In contemporary western society the subject of death and dying has been denied or avoided over the past century, as death has been gradually removed from the intimacy of the home to institutions, especially hospitals. Denial and avoidance can take many forms. Possibly the primary form originates from the fact that many lives today are prolonged by medical means, which promotes the ideas that, in any circumstance, something more can always be done and that disease can be cured. This has been called the medicalisation of death, where ageing and dying are treated as diseases to be defeated by medical technology.

Spiritual care is care that addresses the needs of people in their search for meaning in life; it helps them to make sense of their lives and is especially relevant during the journey into death.

Some factors in a good death are:

• To feel the time is right – a sense of life completion

• To have come to final life meanings

• To be comfortable, pain-free and to have symptoms well managed

• To be reconciled to others

• To have handed over the story to the next generation

Sometimes dying can be pretty grim and it is hard to find anything to laugh about, and yet, at times, humour and joy come and give great relief and a sense of being together on this journey…. Humour has a special place in the process of both living and dying. Humour can help us through the darkest places and give us courage for the next steps. Too often we feel that we must be serious in this process of dying. There may be times when humour is right! At these times, let it flow … One study of the use of humour in hospice settings found that humour was used in 85% of observed nurse visits, and that 70% of these were initiated by the dying person, underlining the importance of the interaction with the person who is dying.”

Dementia

Prof John Swinton of the University of Aberdeen writes in his book Dementia – Living in the Memories of God:

“Dementia creates strangers…. To be a stranger is to be a threat to the cohesion and safety of a group or community.… We don’t really understand those who choose to be with the afflicted or those who have no choice other than to be with them. This was one of Jesus’s problems. Because he spent time with strangers – tax collectors, sinners, prostitutes – their stigma and alienation became his (Luke 7:34) …. It sometimes seems that strangeness rubs off on those who hang around with strangers… Above all else, the stranger threatens our peacefulness, our sense of Shalom…. It is easier to position people with dementia as strangers whose customs, worldviews, and experiences are alien to “us”… In an odd way, recognizing the ways in which those involved with dementia become strangers is the first step toward developing a way of looking at their strangeness which has healing possibilities. The idea of offering hospitality to strangers is a key theme that runs throughout the Old and New Testaments. …. The word “hospitality” means “stranger-loving” ….. To practice hospitality, then, is to learn how to love the stranger.”

Swinton lists some practices that can help bring healing out of the brokenness of dementia:

“These practices aren’t complicated. We just have to learn to recognise them: Critical thinking and re- description, Care as a reflection of Godly action, Recognition of holiness in the other, Presence and being with the other, Remembering well, Lament, Hospitality among strangers, Visitation. At the heart of these practices lies the practice of visitation. If we don’t visit one another, if we don’t take time to be present for one another, we will never see dementia for what it really is. So, my concluding thought would be quite simple: We must visit one another – spend time together and offer friendship, respite, relief, listening, and loving presence to both sufferers and carers. … As we do these things, as we practice in such ways, God is worshipped and attended to. As we do these things, so a little piece of heaven is revealed on earth.”

“It has often been said that healing is not an event, but a journey. This is because, essentially, Christian healing is not just the wonder of physical or mental recovery, however startling the occasion; it is ultimately the repairing and developing of relationships with God, with others, with ourselves and with the world and society in which we live. This is the journey of a lifetime and it will involve mystery and mess, failure and growth, but our final destination is to look God in the face for the brilliance of an eternity. Healing is the ongoing resource which will enable us to walk this path where we will grow into wholeness, into God’s likeness. Consequently, each experience of healing is not a terminus where we can stop and believe that we have arrived at the end of our journey but a stepping stone on the way to becoming complete in Christ. We also quickly discover that we are not alone in this quest, it is a journey in the company of others.”

Russ Parker Healing Wounded History

“In fact, healing is probably easier for Catholics to understand than for most Protestants, since we have grown up with a tradition of saints blessed with extraordinary gifts, including healing, the one that is still used as a test of canonization. Consequently, most traditional Catholics have little difficulty in believing in divine healing. What is difficult is to believe that healing can be an ordinary, common activity of Christian life.”

Fr Francis McNutt

“After this it was noised abroad that Mr Valiant-for-Truth was taken with a Summons, by the same Post as the other; and had this for a Token that the Summons was true, That his Pitcher was broken at the Fountain (Eccl 12:6). When he understood it, he called for his Fiends, and told them of it. Then said he, I am going to my Father’s, and though with great Difficulty I am got hither, yet now I do not repent me of all the Trouble I have been at to arrive where I am. My Sword I give to him that shall succeed me in my Pilgrimage, and my Courage and Skill to him that can get it. My Marks and Scars I carry with me, to be a Witness for me, that I have fought his Battles, who now will be my rewarder.

When the Day that he must go hence, was come, many accompanied him to the River side, into which as he went, he said Death where is thy Sting? And as he went down deeper, he said, Grave, where is thy Victory? So he passed over, and all the Trumpets sounded for him on the other side.

Then there came forth a Summons for Mr Stand-fast …. And he said, This River has been a Terror to many; yea, the thoughts of it also have often frightened me. But now methinks I stand easy, my Foot is fixed upon that, upon which the feet of the Priests that bare the Ark of the Covenant stood while Israel went over this Jordan … I see myself now at the end of my Journey; my toilsome Days are ended. I am going to see that Head that was Crowned with Thorns, and that Face which was spit upon, for me. I have formerly lived by Hearsay and Faith, but now I go where I shall live by sight, and shall be with him in whose Company I delight myself. I have loved to hear my Lord spoken of, and wherever I have seen the print of his Shoe in the Earth, there I have coveted to set my Foot too…. After he had said, Take me, for I come unto thee, he ceased to be seen of them…..

But glorious it was to see how the open Region was filled with Horses and Chariots, with Trumpeters and Pipers, with Singers , and Players upon stringed Instruments, to welcome the Pilgrims as they went up, and followed one another in at the beautiful Gate of the City.”

John Bunyan Pilgrim’s Progress Part 2

Jesus said to His disciples:

“I’ve said these things to you so that you can have peace in me. You’ll have trouble in the world. But cheer up! I have defeated the world.”

(John 16:33)

1. The Liverpool Pathway was an attempt to find a way to a ‘good’ death. Given that we are all on a pathway to death, is the idea of a Shalom Pathway a helpful one? How can we help our friends to understand our belief that death is not the end, but that the Pathway actually leads to life, and life begins now?

2. Do you think we should talk more about death? If so, what should we talk about, and what should we say? Should children discuss this with their parents? Should schools say anything to students about death? How far should the Church take a lead in advocating in society the idea that a good death is an important part of living?

3. Should we be countering the idea in society that a death is a professional failure for the medical profession? If so, how might we start to do this? How might we help the medical profession in setting out ethical principles for end of life care?

4. Would your answers to Question 3 be any different if it was somebody close to you who was near to death?

5. Do you agree with the slogan ‘Live until you die’? What sort of things would you do? In what way does the hope of life after death inform the way we live as followers of Jesus on the later stages of the pathway to death? What do we hope our friends and family will learn from the way we handle our own death?

6. What could the Church be doing to help people preparing for and moving into what will probably be a long retirement? What expectations should we have of the retired people in our Church? Is discipleship any different in retirement?

7. Does humour have any place in a ‘good’ death?

8. Are you ready for your own death?

9. How would you cope if somebody close to you began to show symptoms of dementia? What help might you look for? Do you think it would affect your trust in Jesus?

10. There are many different types of dementia, and it is increasingly being written about. Do you think that the loss of the mind can endanger salvation?

11. Do you think the idea of people with dementia as ‘strangers’ is a helpful one in working out how to help them and their carers?

12. “Theologically speaking, well-being has nothing to do with the absence or reduction of anything. It has to do with the presence of something: the presence of God-in- Relationship. Well-being, peace, health – what Scripture describes as Shalom – has to do with the presence of a specific God in particular places who engages in personal relationships with unique individuals for formative purposes. Rather than alleviating anxiety and fear, the presence of such a God often brings on dissonance and psychological disequilibrium, but always for the purpose of the person’ greater well-being understood in redemptive and relational terms.” (Swinton). Do you agree that in some circumstances mental illness might have a short or medium-term beneficial effect, and how would you explain that to a sick friend? What benefits do you think dementia could bring?

13. What do you consider to be your story that is to be handed over to the next generation? How much of this might have come from the story you received from your own parents or their generation? How will you pass on your wisdom? Do you worry about your ‘legacy’? Should a follower of Jesus be worried about leaving something behind by which they will be remembered?

14. In II Samuel12: 1-24 the son of David and Bathsheba dies, in spite of David’s prayer and fasting. When the baby dies, he told his servants who were upset by his lack of grief: “While the baby was still alive, I fasted, and I cried. I thought, ‘Who knows? Maybe the LORD will feel sorry for me and let the baby live.’ But now that the baby is dead, why should I fast? I can’t bring him back to life. Someday I will go to him, but he cannot come back to me.” Howdoyoufeelaboutthisresponse?Howshould we grieve, and how should we help those who grieve?

15. Some people are afflicted with terrible things: is lamenting with them a sign of lack of faith in the God who heals?

16. John 16:33 ‘Cheer up! I have defeated the world.’ What do you do to cheer yourself up when you feel down? What experiences can you share of times when God made you laugh, or when the Holy Spirit brought you a deep sense of joy and Shalom?

17. Can you measure over recent years how the Holy Spirit has improved your love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control? If so, how much further do you have to go to full Shalom?

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