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Spiritual care of dementia

Doctor AdrianTreloarConsultant and SeniorLecturer in Old AgePsychiatry

Declaration of interest: I am a Catholic and so what I say isin a small part said from that perspective, though the realityof what I say is very much applicable to those of all faiths.This talk was written to help Catholic lay people whoprovide spiritual care for those with dementia. But I hopethat it may show the way for those of other faiths to helppeople with dementia. Each faith should bring its ownstructure to the spiritual needs of their patients.

The greatest sadness is if professionals feel that they areunable or not allowed to help and support the spiritualneeds of all the patients for whom they care. To acceptthat situation may be to accept the imposition of a form ofatheistic secularism.

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What is spiritual care?

•Not only religious care•But must include care appropriate to the

patients religious background

Spiritual care is widely recognised as being crucial in the care ofthose with dementia and those who are dying. But the concept ofspiritual care is poorly understood and poorly supported. Many areinclined to think that it is about making people feel better, providingcomfort and support and enabling understanding. That is of coursetrue, but as I thought through this I was aware that that was and isnot enough.

There must also be a religious and spiritual componentfor those who want and need it. As I thought about all this I cameacross a hymn which, for me, gives a sound and sensiblephilosophical and practical basis for understanding what spiritual careis. It comes from the Catholic“stable”. But it might just as well applyto any other Church or Faith stable with a bit of adaptation.

The hymn sets out how the gentle kind and nurturingsupport that all people of faith must wish to bring to those who aredying must be set out alongside a clear understanding and of thestructures which that faith brings to provide such comfort and care.Put together, good spiritual care becomes a powerful tool for many.

I must admit that the model probably does havelimitations for atheists, but for agnostics, we know that as death andcrisis nears, the acceptance of the possibility of the supernaturalgenerally increases substantially. Even for atheists, we must allowthose who are dying to hope in the future, even if they conclude thatthat future will simply not include them.

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Our Lady Star of the Sea

•Storm tossed CatholicSailors terrified for theirlives knew what it was tolook to Our Lady as theirStar (guide) to safety

•The North Star is ofcourse the sailors guidehome.

•Insert picture of a clippership or better still a video

The hymn which, for me, sets out that basis ofunderstanding is a hymn to“Our Lady, Star of the Sea”called “Hail Queen of Heaven”. What we have just playedis of course not a hymn about dementia. It is in fact a hymnwritten in the 18th century at a time when sailors wereregularly subjected to massive storms, while sailing in smallwooden ships around the world. They routinely knew whatit was to fear for their lives upon the sea and routinely knewthe prayers they would say as they hoped to survive thestorm. On such nights storm tossed sea sailors would lookto Our Lady to keep them safe, to protect them and to bringthem home safely to their families. The stars (especially theNorth Star) are the guide for sailors and it is naturaltherefore for Our Lady, who is the guide and protector ofsailors at sea, to be seen as the “Star of the Sea”. So it isthat for sailors, who may be more regularly frightened andterrified for their lives than any others, Our Lady becomestheir guide and protector in those darkest and stormiestnights.

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Praying for the wanderer

•Verse 1 •Hail, Queen of heav'n, the oceanstar,Guide of the wand'rer here below;Thrown on life's surge, we claimthy care:Save us from peril and from woe.

Mother of Christ, O Star of the sea,Pray for the wanderer, pray forme.

So the first verse of this in sets out the vision of OurLady as the guide of the sailor thrown upon the sea.The verse pleads with her to save them from periland from woe, bringing them safely home to port.But inevitably when people who work with dementiasing this hymn they are bound to smile a wry smilewhen they pray for the wanderer. Dementia is, afterall, a condition which causes more wandering thanany other medical illness.

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Calm our fears, tend our sorrows

•Verse 3 Sojourners in this vale of tears,To thee blest advocate, we cry;Pity our sorrows, calm our fears,And soothe with hope our misery.Refuge in grief, star of the sea,Pray for the mourner, pray for me.

Mother of Christ, O Star of the sea,Pray for the wanderer, pray for me.

But here in Verse Three we see what Our Lady does forsailors at sea. What is it that the terrified man would lookfor in the mother of Our Lord? Actually he would look forsomeone who is able to understand their needs and able tounderstand how to help someone who is in such fear.Someone with dementia who is unable to remember orunderstand what is wrong with them will also look for thesame qualities both in Our Lady and in those who set out toprovide spiritual care for them.

We cry out to Our Lady to take pity upon our sorrows, tocalm fears, to sooth our suffering and to give us hope. Weask Our Lady very simply to pray for us; to pray for thewanderer; to pray for the person with dementia. So it is thatwe should set out to provide care for people with dementia.

Verse three is a manifesto for the spiritual care of peoplewith dementia.

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Why and how do we do this?

•Why?–Because we simply must–We are dignif ied by the

carewe show to the mostvulnerable

•How?–By understanding about

dementia and–Providing good care–Being able to give effective

spiritual care too

Of course it is simply a necessity that we shouldsupport and care for people with dementia. Bydoing so we not only help them but we are helpedourselves. We are truly dignified by the care whichwe show to the most vulnerable members of oursociety. Just as Mother Teresa was hugely dignifiedby the love she showed to deserted children we tooare dignified by what we do for those who need usmost.

To do this better we must of course understand theproblems faced by the people we seek to help. Wemust understand about dementia and learn a littleas to how we provide good care. Then we will beable to give effective spiritual care as well.

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Living well with dementia

•For some not actually adistressing illness, it withgood care and goodsupport many can livewell with dementia tillthey die

•Dementia requires us tocare and support thosewho suffer it so that theycan live as well aspossible and becomforted in their illness

It is worth noting that it is quite possible to live well with dementia. Forsome, dementia is not actually a distressing illness. For some theworries of being responsible, running a family, worrying aboutfinances and dealing with all the conflicts of life is reduced bybecoming forgetful. Some people actually become happier as a resultof dementia than they were before they got it.

Many more can indeed be perfectly happy with adequate caresupport and love. There is a massive difference between somebodywho is struggling, hungry, with mouldy food in the fridge and anunheated house and somebody who is cared for, is warm and cleanand has food and company. The latter may well be perfectly happywhile the former will struggle greatly. The difference between the twois procured entirely by right minded people giving good care.Dementia requires that we provide the right care and support to thosewho suffer it, so that they can live as well as possible and becomforted in their illness. Sometimes this can be excellently achievedin their own home and often with their own families. Other times it isbest achieved in care homes. Sometimes it needs medication inaddition. Wherever somebody with dementia is looked after theyreally do require the best possible care.

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•For many, dementiais a distressingcondition which doescause substantialdifficulties for thosewho suffer it.•For these we must

also alleviate theirdistress and suffering

For many others dementia is a distressing conditionand here is a picture of a lady who was extremelydistressed, struggling and frightened when westarted caring for her. It is important that we dowhat we can to alleviate the distress and sufferingof people like this. Just as surely as we must treatthe pain of people dying with cancer, we must alsoseek to effectively alleviate the suffering of thosewith dementia. The good news is that we canusually do this fairly well although the reality is thatwe often fail to achieve this as well as we should:people often do not get as much care, assessmentand understanding of their needs as they should.

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Living well with dementia

•Good quality life withmaintained ability tosocialise and also theongoing reality of atwo way relationshipbetween patient andfamily exists. Even inadvanced dementia,people can continueto be a part of theirfamilies .

This lady was living at home with her husband withgood care and good support having had medicationadjusted appropriately and with the right assistancein terms of other carers and trips out etc. Herhusband was delighted she was at home and wouldsend me pictures such as this as a token of hisgratitude. Indeed he was so pleased that he askedme to show pictures of her at talks like these.

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Palliative care ofdementia

•But dementia, is acondition that leads todeath

•It also causes suffering•We must therefore

envisage dementia assomething that requirescare and support and inwhich suffering ought tobe alleviated

• Link tohttp://www.ncpc.org.uk/download/events/Dementia_191006/AdrianTreloar_180107.pdf formore on this

It turns out that in fact the two ladies in the two slides arethe same person. The surprise is that the top picture is herin 1995 and the bottom picture is her in 1997. She gotbetter as a result of good care, and a large part of herrecovery was due to her return home from nursing homeand appropriate medication etc.

For her the best care made her better but it isworth pointing out that often enough the best care will be topalliate the distress, accept much of the decline which isassociated with dementia and seek to provide the bestcomfort and care right through until death. Dementia isindeed a condition which causes death and on averagepeople have about four and a half years after it isdiagnosed. There is a wide variety of life expectancy (somelive much longer) but the notion that dementia does notcause death is a false one. Dementia leads to inactivity,reduced resistance to illness, and an increased risk ofstrokes, heart attacks, pneumonia etc. Painful and difficulttreatments become rightly limited and as a result deathcomes sooner to those who have dementia.

So it is right to be sure that we reduce distressin people with dementia when they are distressed but at thesame time cherish and encourage them in every way wecan.

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For all with dementia

•The illness is anopportunity for us tosupport the sick and alsoan opportunity for the sickto prepare spiritually andsocially for the end oftheir life

•But also to accept careand support in a way thatthey may neverpreviously have done

But for all those with dementia the illness does provide anopportunity for us to support the sick and to help them toprepare both spiritually and socially for the end of theirlives. Indeed this is an opportunity which is often notavailable to those who die suddenly and unexpectedly.

But dementia also requires anybody who gets itto accept care and support in ways in which they maypreviously have never done. Personal care, washing,cooking, being fed, accepting some of the indignities ofbeing changed and having accidents are part of the illness(although that perception as an indignity is value based:accepting care can demonstrate the worth of the personcared for who is thus dignified).

In a Christian sense we must accept that allthose who fed them, all those who clothed them, and allthose who visited them when they were sick and all thosewho visited them when they were in care homes visitedChrist just as he told us in the Gospels (Matthew 25, 36).Each person with dementia gives us the opportunity to loveChrist and to serve the people he loves so much. We canalso support those whom he expects and hopes to take tohim so soon.

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What is dementia?

•A progressive conditionthat is associated withbrain cell loss and

•Global poor function ofthe brain in terms ofmemory but also in termsof

•Personality change•Reduced ability to do

things•Reduced understanding•Reduced ability to

communicate etc.

Dementia is a progressive condition associated with theloss of brain cells. The underlying pathological processcauses brain cells to die and the connections betweenbrain cells to become reduced. As a result the entire brainfunctions less well. As well as difficulties in memory thereare changes in personality, reduced ability to do things,reduced understanding and a reduced ability tocommunicate.

The picture shows a brain scan of someone with acombination of Alzheimer’s type dementia and a vasculardementia. The amount of brain (which is grey) is reduced.The black shadows in the middle are the ventricles whichare enlarged and the black lines around the outside showthe increase gap between the folds of the brain. Thisperson has a moderate dementia. In severe dementiachanges are often more marked.

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Pathology of dementia

•Microscopic things calledneurofibrillary plaquesand tangles which thenlead to

•Brain cell loss and brainatrophy

•Or•Small blood vessels

disease which then leadsto small patches of braincell loss producing asimilar picture

In Alzheimer’s disease you see microscopic things calledNeuro-fibrillary tangles and plaques. It is these microscopicprocesses which cause the brain cells to becomedisordered and to die.

In vascular dementia small blood vessel disease causestiny infarctions (small areas of cell death) and hundreds ofthousands of these areas combined together to produce asimilar effect. If there is a difference between the twodementias, it is perhaps that insight is often a little morepresent in vascular dementia and then maybe sometimesmore focal deficits in ability.

Most dementias are a mixture of those two types.

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•Most dementias are amixture of those•There are also

dementias linked toParkinson's diseaseas well as other rarercauses.

There are various types of dementia. We have alreadymentioned the Alzheimer’s type and the vascular type.There are dementias associated with Parkinson’s disease,and also rarer forms of dementia such as Picks disease orfronto-temporal dementia.It is worth just mentioning that it is the Alzheimer’s type

and the Parkinson related dementias that appear to benefitmost from the memory improving medications.

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Needs for care of dementia

•Care•Support•Good treatment including

memory improving drugsbut also just goodmedicine optimising allthe other conditions thepatient has

•The highest standards ofcare and support

•The alleviation of distress

The greatest need in dementia is really good care. Withoutcare people will suffer in pain or distress and discomfort.Support is so much more effective than any othermedication or treatment. Sensitive support, understanding,communicating well and respecting and loving is absolutelyessential.

Good treatment does include memory improving drugs butwill also include excellent medicine optimising all the otherconditions the patient has. In addition alongside the higheststandards of care and support distress must be alleviated.Sometimes this requires medication. Other times it justrequires good quality care.

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Need for hope and trust

•Those with a life endingillness ought to be able tohope and trust that–Their carewill be excellent–Good effective care will be

offered–They will have ongoing

care and support fromboth professions but alsofrom clerics and those whovalue their faith

–They will alw ays berespected etc

–They will not be seen as anencumbrance

Of course all those with a life limiting illness should be ableto have hope and trust that their care will be excellent andthose looking after them will do the very best they can.

In all honesty patients with dementia have the right toexpect ongoing care and support from both professionalsand also clerics, as well as from those who value their faithand appreciate what their faith means in terms of the call tocharity.

People with dementia must always be respected andshould not be seen as an encumbrance. I have seenpeople with dementia in the last days of life continuing tocontribute to those around them and continuing to functionas a member of a family. We too easily conclude that thosewho are dying no longer serve those who will be leftbehind. Even at the very end of life, we can see a two wayrelationship between the patient and carers.

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Communication

•Take time, be relaxed•Don’t be too complex•Enjoy the person you

are with•Be able to do things

differently•Avoid arguments•Put answers into

questions etc

It is worth mentioning that communication is a really important issuein dementia care. Anyone visiting the sick needs to take time andthey need to be relaxed. Try not to be too complicated. It is a realblessing to be able to enjoy the person you are with. If you knowmore about their background this becomes easier. It makes itpossible to do things differently and people with dementia rememberthe past much better than they remember the present. In this contextdiscussion about the pastmay well be helpful.

A gentle chat about Church last Sunday will remind the individual oftheir trips to Church throughout their life. Gentle chats about anythingrelatively trivial will give a calm and relaxing atmosphere enabling thebest communication and the best quality of interaction.

People with dementia become distressed when they cannotunderstand. They equally become distressed when they cannot workout how to reply to somebody. So it’s really important to try and avoidarguments. It’s also useful to try and put the answers into questions.Rather than saying“do you want Holy Communion”it is perhaps alittle better to try something like“it’s my day for visiting you and so Ibrought you Holy Communion.”The latter may well get a far morepositive response.

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So is it enough just to be nicecaring and comforting?

•Very definitely not–Real changes are

needed as life is reallychanged– and the opportunity to

think and pray aboutthese changes is reallyimportant–As is the necessity of

being valued andrespected

But it is very definitely not enough just to be nicecaring and comforting. Dementia brings the needfor real changes as life is truly changed. Dementiaalso brings the opportunity to think and pray aboutthese changes. Given that someone with dementiais no longer as able to practice their faith bythemselves, it is really important that we providethem with the opportunity to do so.

By doing so we will help to value and respect themas we should. If we leave them alone, we neglectour Christian duty.

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Spiritual care of dementia• Most of all dementia is a social

and a spiritual illness.• We tend to focus upon the

medical, but in fact, foreveryone it is about a profoundchange in life and also ajourney towards God.

• So if we neglect the spiritualthen we fail our patients

• In fact health services almostalways forget the spiritual andwill almost always only sendfor the Church at the lastmoment if at all

• They fail to see the bigmeaning of the illness

Indeed most of all dementia is a social and spiritual illness. While wefocus mainly upon the medical, it is about a profound change in lifeand also unquestionably about the final journey of individual suffererstowards God. So if we neglect the spiritual, we fail our patients.

In fact health services almost always forget the spiritual and willalmost always only send for the Church at the last moment if theyever do at all. Priests and Church visitors are excluded from theconfidential network of hospitals. Therefore they are never told thereare Catholics in hospital: they must tell us themselves. People withdementia cannot do this and nor can other very sick individuals. It isreally important therefore that we keep an eye open for all thosewhom we know so that we are informed when they go into hospitaland when they go into care so that we can provide the right input andright support for them. What a tragedy it is when the sick andvulnerable members of our society are thus denied access to thespiritual care they should have a right to receive.

I remember when I first qualified taking a couple of people to Mass onSunday at a time when there was a Mass in the hospital. A few daysbefore a lady had collapsed unconscious with a cardiac arrest.Happily she survived, though she was very ill. Seeing Me takingothers to Mass she asked if I could take her too. I told her“no”because she was too ill. She was still there the following Sunday andshe called me over to ask if I would take her this week. After Massshe burst into tears and told us that she had not been to Mass in 40years. It was a beautiful afternoon!

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Sacramental and prayer support ofdementia

•Lots of evidence thatprayer works, so we atthe very least cannot saythat prayer does not work

•Therefore we ought toallow and support prayer

•We ought to help peopleto pray and know how toguide them towardsprayer that fits the needsof those with dementia

We should not forget that there is plenty ofevidence that prayer works. Even the doubters atthe very least cannot say that prayer does not work.So we need not apologise for praying with the sickand we need to be able to help some people to prayand to guide them towards prayers that fit theneeds that they have.

Of course if prayer works (which we believe that itdoes), it does more than to just comfort or make usfeel good. It can make a real difference and lead toreal changes for individuals.

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Sacraments

•Are concrete means ofgrace

•Are acts done in a specialway to enable that grace .e.g Baptism

•For those who suffer wewill most commonly offerHoly Communion,Confession and the lastrites.

Beyond that of course the sacraments are realmeans of actual concrete grace and these must notbe neglected or denied to the sick. In baptism weare born to Christ, and in Holy CommunionCatholics believe that they truly receive the body ofChrist. In Confession their sins are forgiven (byChrist) and in the Annointing of the Sick they aregiven the strength, peace and courage to overcomethe difficulties that go with the serious illness orfrailty of old age as well as prepared in a specialand spiritual way to meet Our Lord. Sins are alsoforgiven by the sacrament of the Anointing of theSick

Through all the sacraments we are helped furtheralong our path of redemption by Christ our Saviour.

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Confession• Requires an awareness of sin

and an understanding ofrepentance and thereforereally ought to be offered asearly in the illness as possible.Once people have dementiathey may do terrible things(hitting, spitting, swearingstripping off etc but this is alldone in the context of illnessand therefore almost neversinful. These are notwilful actsbut acts of a disordered mind. Practical tip

Offer confession early if you thinksomeone isable to understand andconfess their sins.

Confession does require an awareness of sin, an understanding ofrepentance, and the ability to articulate both the sins and therepentance. Confession is quite possible to do early on in dementiabut in advanced dementia it will really become quite impossible.

So let’s think about things early rather than leave it too late. Let’sconsider offering confession to those with early dementia who areCatholic rather than forgetting the spiritual needs of our patients untilit is too late.

A note here:- it is worth mentioning that people do some remarkablyinappropriate things when they have dementia. Perfectly decent kindand saintly people will start hitting, spitting, swearing and strippingoff. I have had wonderfully good Catholics telling me to do things invery colourful language. These are almost certainly not sins. Theyare not wilful acts but they reflect acts of disordered minds and wemay console ourselves and their families with the thought that theyare done in the innocence of dementia. Indeed in the circumstancespeople with dementia are probably just as innocent as a one-year-old.

So offer Confession early while people can understand the issues ofdementia.

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Ability to receive Holy Communion

•Requires freedom fromserious sin

•Understanding and beliefthe host is special andnot merely bread.

•Again therefore may notbe suitable for those withvery severe dementia andis problematic for thosewho spit it out

•But the threshold forgiving it is low

•Provided you do notexpect it to be spat outetc.

Practical tip

If the Sacred Host is spat out, you canprobably consume it yourself.You maynot like doing thisbut it is pretty safeand the infections you might get veryrare.There isno evidence that you coldcontract dementia by doing thisand itwill protect the Host from furtherindignity

To receive Holy Communion requires the properdispositions for receiving Holy Communion. It also requiresan understanding and belief that this is something special.It is not necessary to have the full understanding that thehost is truly the Body of Christ although this is, of course,desirable and hoped for in communicants who do not havedementia. In the case of someone with learning disabilitiesit would only be necessary to establish that they knew thedifference between the Eucharist and ordinary bread - "abelief that is it something special". As a result it may not besuitable for those with very severe dementia and it can beproblematic for people who spit it out. Generally one islikely to assume that if people spit out the host they arefailing to understand what is offered.

If you were to ask a person who is a devout Catholicwhether they would wish to continue receiving HolyCommunion if they reached a point where they unwittinglyspat out the sacred host, they would surely say that theywould not wish to receive in those circumstances. This isnot a question of a person being "unworthy" but ofrespecting the dignity of someone who has always lived adevout Catholic life."

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Communion continued

On the other hand I once took a lady to Mass with a quite severedementia which caused her quite a lot of distress. She chatted all the waythrough Mass and looked somewhat distressed. However, at Communion shestilled and became calm. It was not only me who thought that a significantspiritual change came upon her at the time she received communion.

So the bar to receiving Communion is really quite low, But if youclearly expect that giving it will cause the Host to be spat out etc then perhapsit is best to pray and not actually give Communion.

Finally if the Host is spat out then you can probably consume ityourself. You may not like doing this but it is pretty safe and the infections youmight get very rare. There is no evidence that you could contract dementia bydoing this and it will protect the Host from further indignity. The alternative is(remembering it to be truly the Body of Christ and thus due very specialreverence) to take it back to Church, and to put it is a glass of water beside theTabernacle until it no longer has the form of bread. By then it can be disposedand the recommended method for this is to dispose of it into the sacrarium ordirectly into the ground if the Church does not have one, and not down a drainetc. While to some such caution may seem daft, it does in fact enable us toshow the extreme love and reverence we wish to have for Christ our Saviour.

If there is doubt, then perhaps a very small fragment of a host isa good idea. Our Blessed Lords body is equally present regardless of the sizeof host given.

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Sacrament of the Sick(extreme-unction/ (last rites)

•For those with seriousillness and lifethreatening illness•Can be received more

than once•Best not left to the

last minute

Anointing of the Sick (formerly referred to asExtreme Unction")

The sacrament of Anointing of the sick is for peoplewith serious illness and life-threatening illness,including old age. It can be received more thanonce during the same illness if the patient’scondition becomes more serious, or in elderlywhose frailty becomes more pronounced. It is bestnot left to the last minute.

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Prayer

•So important,•Comforting and soothing•Practical•Responded to in advance

dementia•Helps•Possibly more effective

when offered by someonewho is really suffering(crying out to the Lord)

Prayer is so important. We remember from Verse Three ofthe hymn we discussed at the beginning the importance ofcomforting and soothing the worries and fears of ourpatients. Prayer is a practical thing that we can do andeven in very advanced dementia we find patientsresponding to it, joining in and doing other acts of devotionas a result of the prayer they are surrounded by. Iremember a lady the night she died: the family said prayersat her bedside and during the last decade she made a tinybut perceptible sign of the cross. Many others have shownsimilar signs of response.

Remember that even when people are unable to respondthey may well hear and understand what is happening. Thishas certainly been the message given by people who havebeen apparently unconscious and recovered (fromconditions other than dementia which you cannot recoverfrom)

Remember too the widely held hypothesis that perhapsprayer may be more effective when it is offered bysomeone who is really suffering.

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Forms of prayer

•Our Father•Hail Mary•Rosary•The Creed•Reading from

scripture or a textfrom a saint.

There are many forms of prayer but some of thesimplest and most familiar will be good. The OurFather, the Hail Mary, the Creed. The Rosary takesa little longer. Actually that may be quite a goodidea because 20 seconds of prayer may not beenough to produce the calm understanding and theoneness with God which the Rosary can offer. . Soif someone cannot receive Communion etc then afew decades of the Rosary said at their bedsidemay well be really helpful.

For others are reading from Scriptures or text fromthe writings of the saints may be really helpful.

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Prayers for the dying

• Beautiful prayers forthose who are dying areavailable and easilydownloaded.

• Help both the dying andthe bereaved.

• We see patients at theend of a dementia illnessrespond to theseprayers.

1. www.catholicdoctors.org.uk /Miscellaneous/Prayers_for_the_dying.pdf

There are some beautiful prayers in the St AndrewBible Missal for those who are dying and these areavailable on the Internet and easily downloaded.They help both the dying and bereaved. The litanyof players has been said by many people who weknow and can be very helpful.

The prayers for those who have just died give theopportunity to see how the soul is carried forth fromthe body to meet Our Lord and the final judgement.Of course it is right to pray for these people on theirlast journey and to pray for their forgiveness by theirSaviour.

You can find some prayers which many have foundto be really helpful atwww.catholicdoctors.org.uk/Miscellaneous/Prayers_for_the_dying.pdf orwww.faithandfamily.org.uk/dying.pdf

Or just put “catholic prayers for those who aredying”using exclamation marks into Google andyou will find it.

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Late illness awareness• Quote from prayers for the

dying booklet• On the night she died,

Margaret as prayers were saidmade a sign of the cross

• Pat joined in prayers just a fewdays before death

• Helen to calmed and stilled asprayers were offered

• Those who awaken fromserious brain injuries can oftentell of things they wereware ofwhile all thought them to beunresponsive

Practical tip

Assume the patient can always hearyou and be aware until they are actuallydead, by which time theymay see youpraying for them as their spirit leavestheir body. Pray with them and for them.

Sometimesuse wordsand set prayers

Sometimesquiet too, though words givea structure to communicate the peaceof Christ,

People who are dying may, often, seem to be unconscious or semiresponsive. We know that often enough there is good awareness,and that, even though there may be no response, they will participatein prayers and listen. The prayers below may be said therefore, firstlybecause they are effective prayers to help the dying on their journeyto meet Our Lord, and secondly because, if said aloud in thepresence of the person dying, that person will know those who careand love them are near. They may of course be said more than once,though the time they allow you to spend praying with the person whois dying will mean that frequent repetition is not required. [extractedfrom Catholic Prayers for those who are dying or who have just died]

We mentioned earlier the late illness awareness of some of thepatients we have known.

So

Assume the patient can always hear you and be aware until they areactually dead, by which time they may see you praying for them astheir spirit leaves their body. Pray with them and for them.

Sometimes use words and set prayers. But sometimes usequietness too, though words give a structure to communicate thepeace of Christ,

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Mistakes we make• Many peoplef eel that mental

illnesses ref lect ourbackground

• And/or that depression is asign of a a lack of faith

• Actually it is NOT• Others feel that dementia is a

punishment f or an earlier life(only smoking is a causativefactor for a few)

• Others that the agitation ordistress some get withdementia results from howthey were when they wereyounger

I think I should also mention some of the mistakes we make in terms of lookingafter people with dementia and other mental illnesses. Christianity is a wonderfulthing which brings wonderful support but we do have to understand when we getthings wrong.

Firstly of course there is the question of the sins of our Fathers andthe sins of our past. Our Lord specifically discounted the hypothesis that areillnesses caused by the sins of our Fathers. Similarly most illnesses simply ariseas a result of illness and not the things we do wrong. Mental illness is really notvery different from other illnesses.

Sadly many people subscribe to the idea that depression is in fact asign of emotional or spiritual weakness. This can lay a very heavy extra burdenupon those who suffer such illnesses.

So I do find myself feeling very distressed when I see a post like theone in the picture stuck up outside a local church and saying“If you have no hopethe you have not found Jesus”. To suggest that those who have a depressiveillness have not found Jesus is to tell them they are to blame for their depression.This is really deeply insensitive and quite unchristian. It is factually wrong andmisses entirely the duty we have to care for those who are ill. Depression is amajor illness which does indeed remove the hope of those who suffer it. I havemetmany good and wonderful people of strong faith through having got adepressive illness have indeed lost their hope in the future and even lost hope ofsalvation. Theirs is a grave cross and we should not add to it by telling them theyare imperfect or bad Christians.

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Mistakes we make (2)All distress can be cured by love and prayer• Pain due to a broken leg is

treated by pain killers aswellas good care support love andgood spiritual care

• The distress of dementia istreated by pain killers aswellas good care support love andgood spiritual care

• To try and treat the distress ofdementia w ithout the rightmedicines etc is asunacceptable as trying to treata broken leg with prayer but nosplint.

But depression is in fact a medical illness. It is not a sign of a lack of faith that isactually in most people a predisposition to illness caused by either inbuilt or inborntraits, or acquired illnesses. The majority of depressions in old age arise fromsmall blood vessel disease in the brain. So we need not concern ourselves withworking out why people are depressed etc. Schizophrenia too is an illness whichhas an essentially inborn cause. It is not an illness which you get because youhave bad parents or because you do bad things yourself. If we get pneumonia weconsider ourselves unfortunate. It is easier to give ourselves pneumonia than it isto give ourselves schizophrenia or depression.

In depression people may start to believe and worry about awfulthings. In the elderly their past will come back to haunt them. It’s best to rememberthis. The preoccupations, beliefs and worries of a depressed person are not thecause of the illness. The illness causes them to become preoccupied about someof the bigger worries they had from earlier life. We must not attribute illnesses inold age to things from early life.

In my experience people of faith show two versions of severedepression. In one form they merely conclude that their sins have been so awfulthat they cannot possibly be redeemed and they become convinced of theirdamnation. Even a minute tax error in the early 1950’s can provide enoughevidence to support an unshakable belief in their damnation. The other groupmerely lose their faith and conclude that all they ever did was in vain. Either formof depression is a huge torment. Tell them it is their fault for lacking faith and youmerely enhance their suffering.

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Mistakes we make contd

Dementia is not a punishment from an earlier life it is merely anillness acquired in old age.

Remember too that pain due to a brokenleg would never be treated by love a hug and a cup of tea. We willsplint it and mend it. The pain of that leg may be reduced a little bylove and good care but it will not be effectively treated.

The distress of dementia also requires good effectivetreatment along with the right love and support. To try and treat thedistress of dementia without the rightmedication should be just asunacceptable as trying to treat a broken leg with prayer but no splint.

[M1]Not sure what you intended to say here

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Final tips• Be confident but humble• Confident that by caring you

do what is good and what Godwants

• Humble know ing that in doingyour best you will bothsucceed and get it wrong

• Try and find out a bit about theperson you are caring for, it willhelp you care better

• Do not fight• Offer care and love• Cherish the dying• Love the sick• Enjoy the person for whom you

are caring

So Be confident but humble.

Be confident that by caring you do what is good andwhat God wants.

Be humble knowing that in doing your best you willboth succeed and get it wrong.

Try and find out a bit about the person you’re caringfor: it will help you care better

Do not fight

Offer care and love

Cherish the dying and love the sick

In the midst of the work and strain of it, try to enjoythe privilege of providing care for the person who isin your care.

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Sooth with Hope ourMisery

Sojourners in this vale of tears,To thee blest advocate, we cry;Pity our sorrows, calm our fears,And soothe with hope our

misery.Refuge in grief, star of the sea,Pray for the mourner, pray for

me.Mother of Christ, O Star ofthe sea,Pray for the wanderer, prayfor me

And remember the Manifesto that we have fromVerse three of the hymn.