A Request for information

Discussion in 'Researchers, students and professionals' started by Fr Ian, Jun 1, 2005.

  1. Fr Ian

    Fr Ian Registered User

    Jun 1, 2005
    Greetings to everyone.

    This is my first visit here.

    I am hoping that in the future people will be able to share with me some "good practice" !!! Let me explain...

    I became a C of E minister in 2003 and since then have become increasingly aware of the way dementia affects people's lives. When I was younger, my grandmother was diagnosed with Alzheimers and I remember watching her deteriorate and not understanding how the happy bustling lady I loved became quiet and withdrawn. She was haunted by people in her imagination and in her past that none of the family remembered and was convinced that she was "in trouble" for something she had done 50 years before.

    Part of my post ordination training is to give my colleagues a presentation on an issue that interests me. I have chosen to examine ways in which the church succeeds and/or fails in integrating people with dementia (including those who have been known to the church before they became ill and those who have started attending afterwards).

    I wonder if anyone can share some experiences of how they and their loved one/s have been received.

    I hope one day that the information I gather here as well as the knowledge I have of those in my congregation will be applied in a way that makes being part of being a worshipping community a less forbidding experience.

    Many thanks for reading this.

    Fr Ian
  2. janew

    janew Registered User

    Mar 28, 2005
    How I have found church life

    I have belonged to Methodist Church as long ago as I can remember and went to work for a Christian Hotel before moving back home when my father died and my mum was alone.

    Our Church family have been wonderful and as I care for my mum and work full-time I don't know what I would do without my friends in the church. On a Sunday morning I take my mum and another lady with altzheimers and I know of one more lady in our congregation who has the same illness and they are all treated with respect and most people seem to understand the problems I have to deal with, along with being there for my mum.

    During the week one of our Church Family friends will call in if she knows I am at work to sit with my mum when she comes home from the Day Centre and if I have any problems I know she is at the end of the phone.

    I am not used to putting down in writing my thoughts but just felt the need to send a reply.

  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hello Fr Ian, and welcome to TP.

    I think you have chosen a very good topic for your post ordination presentation.

    However, I think it may also prove a thorny one. All the better for that, because the most worthwhile challenges are generally those that are not that easy!

    Our experience was not good, and as a result I have left the church, other than maintaining a link to enable my wife, in time, to have the funeral service she would expect, and deserves.

    Jan studied music at Cardiff University and played organ at Llandaff Cathedral. She was always religious, yet not pushily so. Over the first 18 years of our marriage, we attended a church only on the occasional Christmas and Easter, and for Christenings and funerals. This was primarily I suppose because my family was a broken one, and no part of it had been religious to the extent of attending church.

    When we moved to the house where I now live alone [Jan is in a care home 25 miles away], we found that the small church in our little village was most welcoming and we began to attend Evensong each week. Gradually, Jan began to play the organ on the evenings we went, and I started to do Readings, as well as produce the Parish Magazine. It was because of Jan that I was baptised and confirmed.

    Jan's symptoms began in the very early 1990's and since no-one could make a diagnosis until nearly 8 years later, we continued attending church for some years. The vicar would give her special prayers during Communion and I think she liked that.

    Eventually she began to faint during services and her confidence was hit such that we began not to go as often, and Jan stopped playing organ. Then there was the diagnosis, and no-one seemed to know what to say or do, so, as was the case with the majority of our friends, the members of the church withdrew from us. Maybe we withdrew as well....

    Frankly, I can't see what one could suggest. The situation is extremely difficult when a congregation member has dementia. It seems easier with cancer and everyone rallies around. The church in the broadest sense is no different than the population generally, of course, and the problem is a general one - that of neither understanding dementia, nor of knowing how to cope with a person who has dementia.

    Certainly our church could not integrate Jan at all, and in being unable to do so it has lost me too.

    I guess my main suggestion would be for members of the church to understand the complexities of dementia to some small degree. There will undoubtedly always be people in any congregation who have been touched by dementia in some way. As each case of dementia tends to be different from each other case, they need to be treated individually.

    Final point: our local community is a small one and the majority of the congregation is mature. Could be they feared they saw their own futures in Jan's condition, or felt they might 'catch' it. Fear and ignorance are good bedfellows.
  4. Anne54

    Anne54 Registered User

    Sep 16, 2004
    Dear Fr Ian
    I have sent you a private message.
  5. snuffyuk

    snuffyuk Registered User

    Jul 8, 2004
    Near Bristol
    As most of you know my dear mum died recently. She had been a member of our local church since her early 20s. She and dad did not actually marry in church as both families dissaproved so they "nicked" off to the nearest Registry office!
    Anyway, mum had us all Baptized and later Confirmed in the parish church. Over the years mum helped clean the church weed the churyard and did the flower rota for the war memorial in the church.

    Mum was a regular church goer on a Sunday and then later to a Thursday 10am Communion for those older members who found the later time easier.Then mum for various reasons was unable to attend that service. She then received communion at home once a month. All very impressive re the church so far.BUT when not able to attend church visiting by parishoners was nil. Apart from Communion clergy visiting was nil. The parish "visitor" came twice.The others at the Thursday service did not visit. all were happy to ask after mum.

    The only REAL visitors were 3 or 4 old freinds who found it so hard towards the end to have a proper conversation with mum. They found the visits difficult and sad. BUT THEY CAME!

    Today one of the churchwardens came to visit ME.Not visited before. Very kind to think of me but where was the visit when mum needed it?? So many ask after ME now mum has gone. Where were they when mum was alive. Prayers are all well and good but the visit, the touch, the smile gives so much comfort to those who are not long for this life.

    Church no more for me.


  6. daughter

    daughter Registered User

    Mar 16, 2005
    How like the church to 'prey' on the vunerable. No offence but, in my opinion, if people with AD were already religious, then 'the church' should show compassion and understanding. If not then the last thing people, who are already having delusions and paranoid feelings, need is someone tryng to convert them.
  7. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Hazel

    I'm the last person to be an apologist for organised religion, but I really don't think Ian was doing more than accept that the C of E doesn't cope with this part of its community at all [perhaps in some locations - Jane felt differently], and wants to explore how to address that.

    I'd not want to reject any offers of help, support, consolation, whatever from any quarter, and I do think Jan would have gained benefit from a more caring local church.

    I say hooray for Ian's attempts. Good luck to him. No-one needs to reply if they don't wish to. It might be a good thing for all clergy to have to be aware of support services like TP. Might focus them more on the real problems around.

    The church - in my opinion - has a major confusion generally with its community and - in my opinion - tries to address too many different groups in too many ways, rather than presenting a single face. In our church all the services were different - some tradional, some modern, some happy clappy, some with no music, some with one verse sung many times [hardly music!] in the modern way of hymns, some with PC-based presentations, many with over emphasis with problems abroad while omitting to look within the local community and its problems. We had one vicar who was more interested in his local radio slot than the services.

    We went to Evensong always, in the days we attended services, because they were traditional and originally gave time for reflection. Most of the people there - very few in fact - were older and it was really nice.

    As vicars changed from career clergy to retired Human Resources and other business managers who needed something to do in retirement, the services became shorter and crammed with material, leaving no time for reflection at all. In time, the next vicar rather wanted to watch TV on Sunday evenings, so the service was dropped.

    Grief, I'm onto religion now, so I may as well take in funerals too....

    I've attended many funerals, from traditional Welsh burials, where all the women remain at home and make tea and the men go to the graveside [rather moving, actually], to more normal interments, to cremations with good services, to cremations with appalling clergy. The best ever was a Humanist cremation service, quite the most moving and to my mind, 'right' one of the lot.

    Amen. ;)
  8. daughter

    daughter Registered User

    Mar 16, 2005
    Point taken Bruce and let's hope some good comes from Ian's efforts.

    I still stand by my comments though because encouraging someone, with AD and obsessive thoughts to believe there's something/one watching them all the time, could (in my opinion) be disastrous. Church people, or any kind of people, all that is required is some consideration and not baptism.

    I am interested in your comments about Humanistic cremation services. Is there any more information you could provide on this?
  9. Geraldine

    Geraldine Registered User

    Oct 17, 2003
    Dear Fr

    Our local church helped my Mum attend servcies and functions for as long as she was able - her biggest problem was the decreasing problem caused by lewy Body Dementia. After she moved into a home parishoners regularly visited. During 'crisis' before this at home our vicar would come literally at the drop of a hat, Mum also had communion at home and once in the home. I know they would have organised this more if I had asked - but I'm ashamed to say never got aroung to organising it. Our church also supported me as a carer letting me withdraw from activley participating as priororities in life changed but always being there if I needed them . What I would have likes was to the churches in the locality to Mum's home to be more proactive in going in for occasioanl worship and prayer - whatever the denomination.


  10. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
  11. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Hi Daughter
    I do agree with most of your comments on religion.
    My age group were sent to Sunday school and all that went with it.
    As a young man I was in a sea school and we were packed off Sunday mornings to church.
    I never attend church now and I do wonder how much ministers know and understand about dementia?
    Best wishes

    this was a post that I made August 2004

    Like Bruce I am neutral on religion.
    We went to a Humanist funeral a little while ago,I was impressed.
    He was an old bowling friend,a Welshman from the South Wales valleys.
    He loved big bands and jazz,when we entered the church(crem)Joe Loss was playing,no hymns,no preaching.
    His son spoke about his father and some one from the undertakes gave his life history,with much detail.
    All very nice.
    I will try to get more details for you
  12. Fr Ian

    Fr Ian Registered User

    Jun 1, 2005
    Thank you to all who have shared their thoughts and experiences so far. Yesterday I was out of the office all day and so unable to send replies to individuals, but I will catch up at some point...promise!

    As for Hazel's comments...
    Unfortunately there are some elements within the church that lack sensitivity and have tunnel vision, I for one often challenge clergy I meet that see conversion above compassion as to where their priorities are/should be.

    My intention in setting up this thread is to find examples of good practice that people have experienced or suggestions as to what would make church, worship etc more accessible. I'm not here to make converts, just to make those with AD who are Christians not feel they are unwelcome/unwanted.

    Regards to all

  13. Ruthie

    Ruthie Registered User

    Jul 9, 2003
    South Coast
    Dear Fr Ian

    My husband, who had been "raised" in the C of E (choirboy etc) lapsed into only Weddings, Funerals and Baptism attendance until very early on in his dementia in his early fifties, when he did the Santiago de Compostela pilgrimage in Northern Spain with a group of friends.

    When he returned he seemed to have renewed his faith and started attending church every Sunday and on special days, almost without fail, took communion (well, it was a "high" church, so it was called Mass). He seemed to derive real benefit from it, despite being told off by other parishioners when he "sat in their pews"! He loved to sing and knew all the "old" hymns by heart, and was still able to follow the service until he suddenly went downhill three months before he was admitted to hospital. I tried to go in with him a few times, but couldn't take the ritual, which seemed to be more important than human contact.

    I was raised in the Methodist Church but decided in my teens that I was an Atheist. I had a lot of issues with organised Christianity, which I won't go into now, but I expect you know what arguments many people have against the church. However, over the last 15 years I have become increasingly interested in spiritual matters, but this interest encompasses all religious systems and although I know it could be a great source of comfort to me if I could just have faith in Christ, especially as I now have terminal cancer, I can't make the leap.
    One of my friends (a Christian) once described me as a "Fourth Division Christian", but I think she was putting it a bit nicely!

    Having said that, one of my main beliefs is in tolerance for other people's beliefs, so I was able to make sure that my husband was able to attend his church until about a month before he was finally admitted to an NHS Dementia Unit 18 months ago.

    Although the priest and churchwardens and many others at the church were aware of our situation, there was absolutely no contact from the church apart from a card put through our door 6 months later from the priest saying that he had called but we were out. I must admit, I became very angry, and if it had not been for the fact that at that time I was very ill myself and awaiting diagnosis, I would have been inclined to phone up the priest and give him an earful!

    After I had recovered from major surgery and chemotherapy through last summer and autumn, I asked the named nurse in charge of my husband if they could arrange for him to receive Communion, as it had been important to him before and at some level I believe that it is still important now for him. Even if he doesn't understand what it is about, he is always co-operative about food and drink, and if he does have even a little understanding at whatever level, then he should have the opportunity.

    The nurse agreed with me, and got in touch with the original priest, who then phoned me at home (after some delay). I explained the situation and he said that it was a long way away (40 mile round trip - but I still manage to get there twice a week), so he would see if someone more locally to the hospital could go in.

    This was about two months ago, and there has been no action. I have been getting increasingly ill again as my cancer is recurring, and I have to start some more chemotherapy this week. I will have to summon the energy to chase this up again, but the whole experience has not enhanced my views on this particular church.

    My 81-year old mother, a retired nurse, has come to stay with me for short spells over the last few months to keep an eye on me. She is a convinced Methodist, and I have attended the local Methodist Church with her on a few occasions, and I have felt that the warmth and welcome I found from the minister and the congregation made it easy for me to cross the threshold. The minister is a hospital chaplain for the hospital where I was treated, and at my mother's request visited me when I was at my lowest, and we had a very meaningful conversation, even though I told her straight off that I was not a Christian (or at the very best I was a bit of a Christian, quite a lot of a Buddhist, and a humanist with a sprinkling of Paganism!)

    I know that if I asked, she would visit me at home and offer support, so I do not tar all churches with the same brush, just thought that my experience with my husband's church illustrated the very worst way the church can handle people with dementia. I feel that the attitude being demonstrated is that someone with dementia is no longer a person (i.e. that they no longer have a "soul" or "spirit' and are therefore of no value). My interpretation of Christ's teachings seem to be at variance with this - I do respect Christ as a spiritual teacher, as I do the Buddha.

    After all, if God can notice a sparrow falling out of the sky, I guess s/he could still notice a human being who has an illness (if s/he exists, that is).

    Sorry, I have really let rip here, but as you can see, I feel very deeply about the issue, and you did ask - and I am pleased that you did.

  14. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    I'd hate to be accused of blasphemy, but my view is that - if there is a god - then he/she has clearly been around a long, long time.

    Since things seem so geared to Biblical themes - i.e. long term memory - and things of the present [our loved ones] seem to go unnoticed - i.e. short term memory - then perhaps god is already on Aricept in an attempt to slow down his/her dementia?

    If this offends, do PM me and I'll remove it at once!
  15. daughter

    daughter Registered User

    Mar 16, 2005
    I wonder then, what is the defininition a christian - is it one who can remember why they are praying and who they are praying to? And if they don't - does it matter to the church?
  16. Fr Ian

    Fr Ian Registered User

    Jun 1, 2005
    #16 Fr Ian, Jun 5, 2005
    Last edited: Jun 5, 2005
    That is an excellent question. Thank you. It is a question I will use to challenge those clergy who flaunt the pastoral care of those with dementia.

  17. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    I too would like to see the defination of a christian.
    The dictionary gives a very airy fairy answer,perhaps no one can give better.
    Over the years I have asked so many questions about religion from ministers of different religions but never got satisfactory answers.
    I have made a study of many religions over the years,like so many I suppose looking for something to have faith in,I am not looking any longer,my faith,if I had any, died when AD arrived.
    Norman :confused:
  18. daughter

    daughter Registered User

    Mar 16, 2005
    Isn't the usual answer: "it says so in the bible?" :rolleyes:

    I have faith in you, Norm. :cool:
  19. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    ... and isn't that the answer really?

    If we ascribe every good thing to the influence of 'god' then doesn't that detract from the basic goodness we find in human beings?

    Also, if we ascribe all things good to 'god' then shouldn't he/she also get the blame for the bad things? He/she is supposed to be 'almighty' after all.....
  20. daughter

    daughter Registered User

    Mar 16, 2005
    I will be interested to see your clergy's answers, Ian.

    Here's another question:

    Why is it that my parents, the nicest, most kind people you could ever meet; never hurt anyone; always ready to help anyone; generous to a fault; the best Grandparents to my sister's and my children, ended up having to cope with AD, Dad as a victim of the disease and Mum as the carer? There's no rhyme nor reason, it's just life being unfair.

    Or is it god and his mysterious ways of working? :(

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