An exploration of the UK unpaid carer's world

              How can anyone hope for volunteers to help within a DMC if they have no understanding of dementia?

Page started on 5 12 2016  and most recently updated on 5 Jan                hidden page  

This page will receive no additional text from 15  12  2016.

It cross-references the page here with items marked *

The DMC situation December 2016 page here updates several aspects

Sent to DC on 06 December 2016 08:39    -   later - 1711 - sent this -   "The only optimistic note has come from M (Tuesday organiser)  who announced a dementia knitted comforter and passed it round this afternoon." 

7 Dec - italics added at 7 and 9 

Carers who have no one to turn to here.  

Refer to this entry "32  Working towards Panels 3 & 4 here"  in the links column of the Ross DMC Home page here.   

Council members are asked to give the red panel here a lot of thought.  Would they prefer that it is not associated with Ross DMC?  I can remove the connection.   However, that means the Council is in denial.  It has grand designs for its space age church with no foundation of attention to those in need of care.  Hijacking the Ross DMC is the wrong way of achieving its first attempt at proving that it is qualified to offer new services to the community.  Perhaps that is why Ross DMC doesn't appear on the NEST boards.       

9 Dec

The normal route to a new DMC is long and very involved. The main outcome is paid staff who don't need all these pages.  I present the situation on the basis of the readership having little knowledge of the unpaid carer-world and its huge dementia satellite.  If a topic is complicated, as much relevant info as possible is provided. Reference system v bullet-points is used to aid discussion and email referencing within most pages.  This page excluded.

The Ross Mental Health Steering Group - MHSG - meets on Wednesday 14 Dec.  It was hoped to have resolved issues within this page before.  MHSG presents a variety of project opportunities which I hope to make real in due course.  

I appreciate Christmas is on the horizon and the other seasonal excuse factors, but the project has no infrastructure. Without it, a business plan cannot emerge. It will be supported by the Ross DMC public webpages, as yet to demonstrate that Ross DMC has organisational structure. Aspects are listed on the left of this page.


The two PDs are the only real support so far and have promised to carry out the following action:

  • To pass suitable information to the Rotary Club of Ross-on-Wye for the members to see how they might be able to support the group using the various skills members have acquired through their professional careers.

  • To visit the group in Leominster to see how they arrange their business affairs with supporting evidence of their financial plans & the approaches they made in seeking funding.

  • To see what particular pieces of legislation they have had to adopt in order to comply with health & safety legislation, and safeguarding vulnerable adults.

  • To help put together a business plan that will show how all the relevant needs can be met, at what cost, at what can be raised locally & what will be required from outside funders.  It will be important that this clearly shows how funding will be affected when the work on the church site means a temporary alternative venue will be required.

  • To help in conversations with potential funders to ensure that they clearly understand the need for finance.

  • The plan will also need to ensure we have followed any specific requirements laid down by the M Church as the owners of the building.

  • To help ensure that the requirements of the Charity Commission are met in full.

  • To meet with the group you establish to ensure that we clearly understand the aims & objectives of the group.


1It needs to be said again that this is the only tangible support which has come from CC.  Apart from new room etc hire enquiries, what will be the response to in-need groups which respond to future text on the CC website.  Apathy? more later

                        DIY DMC Business Plan here

                                 Staffing matters here

                                 Under starter's orders here

*2   11 Dec 08:15 - Press release - PR1 - Dear J and team here 

This comment needs to be made.  I have spent weeks with no feedback in the context of wanting to make contact with DC but knowing how much she has to do.  You will read Dancing with disability later.  It dealt with the night-time routine of T's personal care until such text was removed.  See why later.

After a lot of agonising, my sleep pattern has improved since the decision to process the press release was made.  The night disturbance routine is unchanged.  T has no idea of the situation.

12 Dec

I have been to the RG office and Jo has welcomed the page.  All being well, the project will move on a pace after Weds.16 Dec - no reaction to publicity  However, that does not mean that CC does nothing.  The DBS process needs to be looked at vis a vis who is to deal with it if vols come forward.  Start talking about £ routines and applications.  Ditto CC equipment. 

I have investigated vol training and it is not going well.  

CC needs to make up its mind how best to proceed.  PR1 talks about introductory meetings before 1 March.  Weds 1030 to noon, I suggest.  One in January, one in February, may be more. If there's a healthy PR1 response, perhaps a meeting before Christmas. At CC?  

If there are two CC vols, when can we meet?  

The Mental Health Group on Weds will be told that I have booked the library for the week of the public meeting planned for 9 Feb.  If MHG joins the booking the broad theme of dementia will surround the Ross Dementia Friendly Community theme.  Ross DMC, of course, will be prominent.  Will CC organise a rota of its members to man the exhibition?

There is an opportunity for CC members to be involved and there is no reason for NEST to be excluded. Set out the CC stall re community aims.


EO has written an A4 on "Is the Church in full retreat?"

It includes ".... what we need is people who will 'set the heart on fire' .. ", in the context of care and companionship.  The text goes on to talk about the CC beacon of fellowship in the 21st century.  

Has the set of people who will 'set the heart on fire' been identified yet or will the eggs-in-one-basket approach suffice? That puts an immediate strain on the new minister.  Will a new such set of people be recruited and if so, what is the plan?  WIll there be a marketing plan for the CC beacon of fellowship?

Is there an established context of care and companionship?  If so, this observer has not come across it. 

Do you offer a befriending service?

Do you offer a sign-posting service? ... ... ...

And wave goodbye?                                               red panel here

Those questions to ask re CC members first before looking wider afield.

CC members sometimes engage with T, which is good.  However, . . . . . .  

*4  Fund-raising   declined by email

Start planning now.  January 25 is Robert Burns Day. What is the maximum number to sit down to a proper meal at lunch time or in the evening?  Better to arrange for the Friday or Saturday evening if readers want more info.

In 2008, I piped at Monmouth Castle.  Tickets were expensive and it was a RNLI black-tie event.  Towards the end, envelopes were placed on the tables.  There were individual donations of £500 and £1000.  Obviously, guests were wealthy and influential.  It was a fine-food dinner.  Who can suggest how we target such people?

Contrast that with Brampton Village Hall another year.  £10 tickets and egg mayonnaise, haggis, swede and mash, followed by trifle.

If CC is interested, its venue won't suit the first clientele but we shouldn't go to the Brampton Hall level.

If interested, I will add much more info.

Far less formal is "A ‘Sit-down’ Ceilidh and Burns Nicht - in the afternoon".  It could be for the DMC participants, their families, and possibly - CC members.  A chance for integration and better awareness for CC members.

Put the price up and raise funds from a much larger audience-participation session separately.  more

If 250 attend at the Larruperz Centre, quite a few vols from CC could help.  The webpage says "Anyone can tell a story, sing a song or whatever. This dates from the days when people made their own entertainment.  Those were the days!"  Who are the CC members with persuasive skills?  Organise half a dozen CC members to contribute with song etc, as needed on the day.

The latest Alzheimer mag talks about a Dementia Ball.


And now for something daring.

New Year's Eve on looks horrendous here  and here.  

It's a matter of faith in young people.  I am prepared to emerge from the shadows with bagpipe in hand on the stroke of midnight.  CC members distribute leaflets.  Several carry collection boxes.  An engagement protocol has been agreed and understood by everyone.   Probably need to contact Ross TC before.

One CC member needs to be at our house at 2300 to be with T.  

If a reply can be given yes or no before 1600, I  can approach the MHG  on Weds evening, if no.

But - is anyone reading this page?


Final note on funding

To explore

After the service on 10 Dec

Pen and ink one belonging to John the Baptist might have been used to write some of the text spread across this page. 

Take stock of your situation.  Repent - in the sense of change direction.


I was asked by a woman if I knew anything about the DMC project.  I replied "I am the prime mover." She may have read p 5 of Dec Connections.  If so, at the time of the conversation, she knew more than I did then.  Nowhere in CC print am I given a mention.  Nothing in the previous issue mentioned on p 3.  Is it any wonder no one knows about my role?

Internal DMC info

Possibly the first time the DMC was mentioned in church was a fortnight or so before the AGM. I had been left dangling for weeks with absolutely no feedback so that event was a revelation.  My name was mentioned at the AGM.  What was wrong in asking me to stand?  That's the normal procedure.

*5  80% of page 6 of the Nov Connections discusses the Ross DMC.  Further info via DC.  If CC members interact mainly on Sunday mornings when I am there, would it have made better sense to have included my name?  How frequently is DC there?  If I had not put the project forward, no one would have heard of it. 

Dr L is included in the context of MHG.  DC and I are also on it.  Another opportunity missed in widening info availability.  I do not suffer from bruised ego.  I suffer the .. management of the project beyond my control.

While DC was absent, I produced leaflets and gave out about two dozen.  The remaining two dozen were left on the table.  Checking them a week ago made me realise that no encouragement to pick up leaflets has been made. I see no point in leaving more than five leaflets at a time.  I don't speak to many on Sundays but so many do not know anything about the DMC.


Jean P hits the nail on the head - p 8 of Dec Connections.  Apathy has a much stronger grip on the DMC project. 

The woman who asked if I knew anything about the DMC project said she might help but, by the sound of it, not very much.  In discussion with another woman, she said, in response to my saying that she is welcome to volunteer, that two vols are the best expectation from the congregation.  I asked how anyone can think that the DMC is a CC project.  Her response was that it will be a Churches Together project.  DC has hinted at that.  Why am I left in the dark all the time? 

It is evident that apathy prevails.  Has any attempt has been made to determine its extent and to 

reduce it?  Go to the top of the page here and re-read the caption. 

Wasted weeks are pointed out later.  I must wait until Thurs 15 Dec for feedback.  My only hope was that the Council meeting would have taken place before. See large red text much lower down.

Carers are keen to state their case.  However, as long as they do not, everything is OK.  The minute any carer voices are raised, the carers are seen as trouble.  It is as a carer that I have instigated the Ross DMC.   

Dementia Friends

Back to Dec Connections p 5 where it says "training to become a Dementia Friend."  Anyone can become one here.  However, with our member profile, talks will be more appropriate.  "Dementia Friends Information Sessions are run by volunteer Dementia Friends Champions, who are trained and supported by Alzheimer’s Society. Each Information Session lasts around one hour."  

I will repeat what I have already said below.  I am a Champion and it is a reasonable expectation that I would give talks and would have given them very early within the project..  Furthermore, I made it clear that a Deputy Project Leader (DPL) must be appointed asap and be involved in the talks programme as presenter.  But no.  Three external women are involved but I have no idea how.

End of updates

  1. No momentum
  2. Loss of sleep
  3. Is CC the best host?
  4. Dancing with disability
  5. Aspects of dementia
  6. The purpose of these insights
  7. No volunteers for DMC
  8. My investment
  9. Dancing With Dementia 
  10. Conclusion

                                                                                                                                                         hidden page  

Dear D             6 12 2016 

1  No momentum

You will remember that I sent you an email on 5 Nov which included various points.  You replied by saying that you'd deal with them on your return on 17 Nov.

I have been worried about the lack of progress since before 5 Nov but have not voiced concern.   It is now voiced. 

I understand that, on top of the normal list of things you deal with, you have the DMC and your new duties in Brighton.  I understand that the DMC will not be the priority for you and I hope you understand that it is for me a great priority but second best to my wife T.

*6  You will remember that I walked to the church on Monday last week in the dark and freezing cold having just come out of hospital in order to see you and agree a date to meet.  This was in emphasis of the urgency I feel towards the DMC project. You said you would phone the next morning.  

I now learn that we will meet a week on Thursday.  The fact that nothing will have happened between 5 Nov and 15 Dec is perturbing.  Almost six weeks.  I have lost a lot of sleep.

In the early discussion stage I said that I am a Dementia Champion licensed to give talks and offered to give one. See caption under header graphic here.

2  Loss of sleep

EO (organist) was kind enough to drive me home on Monday evening and I remarked that I am losing a lot of sleep through the lack of DMC progress and no volunteers.  She said it was because we are not asking the right people.  I didn't say that we are not asking people in the right way or within a foundation of care.  An early talk on dementia would have helped the situation.

The loss of sleep statement was made in the hope that the comment would reach you.  On Thursday, AS (Bookings Sec) asked how the DMC was progressing.  I replied "No comment." and she was perturbed.  Again said with the hope that the comment would reach you.

The fact that there are no CC volunteers mitigates against the DMC being perceived as a CC project. None of the three women you have brought into the project is likely to take on the role of Deputy Project Leader.  It just doesn't sound right to advertise for a DPL and core volunteers.

3  Is CC the best host?      

Is it not time to evaluate the project in the context of where best it should be placed?  The Baptist Church is well-acquainted with dementia.  I do not propose to take any action in that quarter as CC must be given every opportunity to fulfil its aims.  However, most opportunities have been used to no avail.  The indications are that the 1 March date will need to be extended assuming that CC can maintain sufficent self-confidence to operate as a premises provider or host.

I am not prepared for any further extension when all that has been achieved is the conclusion that no volunteers ensue from CC. I could announce that I am starting the project much earlier elsewhere.  However, I hope that it will not be necessary.  

Update 13 Dec

If tomorrow brings the DMC to the attention of Ross, I hope this section can be deleted.

*74   Dancing with disability

I want to sleep at night. On 11 Dec, the rest of this section which dealt with my caree's personal care was removed.  I consulted a pre-1983 Edinburgh friend who advised that readers cannot relate to such info.

Update 17 Dec

The first time the text was inserted, it had no impact and was removed.  It was sent as an an email.

It is now replaced.

I want to sleep at night.  Already, T is up for 45 mins 1/7, twice a night 3/7 three times a night 3/7.  Furthermore, she also suffers from diarrhoea 1/14 caused by the diverticulitus -Item 1.17  here.   You would understand what life is like for the two of us if you read the entire list.  Sometimes, I sit up in bed thinking about the lack of momentum of the project as it is pointless trying to sleep when another bout of commode is anticipated.  T's nightwear and the bed need changing after bouts of urine incontinence 2/7.  Sometimes there is so much diarrhoea to clear, plus nightwear plus bedclothes to change (1/28), that I use a dustpan and slat of wood to dispose of the messy stuff.  All this in the framework of keeping T in good spirit and keeping her warm.

Our elder daughter operated Plan B for the first time while I was in hospital.  Up twice both nights but no mess.  She told me that I must have the patience of a thousand saints. 

The last time T  and I went away, the bed was wet one night and saturated the next.  We left two days early.  £1000 for a week minus the two days.  Has happened before elsewhere.

Teresa is at her least energetic state to move from bed to wheelchair/commode at 3 and 4 etc in the morning. It is a dance with disability.  Carers come in the morning and evening but T cannot relate their attendance to my dance with disability.  I suffer from severe back pain at times one cause of the recent hospital 3 day trip and need to sit on a low stool to dress her.  Dementia patients often have no sense of time or urgency.  They cannot muster feelings of concern or empathy/sympathy.  They lose the other-person perspective.

end of reinsertion

2 Nov 2016 - Transient ischaemic attack (TIA) here     

Read and reflect - here

5  Other aspects of dementia

My sister and talk on the phone 1/4 months.  Two weeks ago, I put the phone down and said it was Jane.  "Who is Jane?"  I said who she is. T is rarely upset but on this occasion she was angry.  "Why didn't you tell me you had a sister?"

Life for T is TV a lot of the time.  She can watch the same episode of Cops or Heartbeat several times.  When the adverts are on, I am asked to get rid of them as she can't understand why they are there.  She becomes quite upset at times but cannot express why.

Christmas cards arrive and most relatives and friends have been forgotten. 

For much of the time, T can hold a fairly normal conversation and people may not realise she has dementia.  CC members may not realise and therefore may not be concerned.  If there was a foundation of more than superficial reaction to people with a problem, there may have been a social care response.  The eggs-in-one-basket situation prevents a need for wider appreciation and analysis of the fact that most of us are elderly and at least some of us have problems.   

*8  6   The purpose of these insights

To help the reader understand.  Not only about the DMC situation but the situation re CC.  New faces in the services.  Two or three weeks and hospitality might engage.  Two or three months and friendship might engage.  In our case M and K came to give Bible reading to T for several weeks.  Nothing specific since.  I am not complaining. However, I observe the lack of back-up for them and follow-up for T and me.

Consider the red panel on the Carers who have no one to turn to page here.   "3.7  If you have a website, do you ask "Are you a carer? " " 

Spend time thinking about that header graphic text.  Think about apathy.

On that page:

6.3  Wider aspects while I think of them.  Not related to the heading.

If time, or for the future, can we discuss - The Church and the Carer.  Ask this question on the CC website?  -  Are you a carer?   source here not to be confused with a second 6.3

A lot of work needs to be done before posting that question.  Once a foundation is laid to deal with any replies, CC can work out another level re dementia.  Once members are better acquainted with it beyond Dementia Friends level, vols are more likely to venture forward.  

Has any research been carried out as to who reads the website?  A previous page elsewhere asks about recruiting people in the 55 to 65 age bracket as a start to lowering the average age of members.

7  No volunteers for DMC

I didn't speak to many people and the common response was two-fold - "I have too much to do." and "D will sort it out."

*9  The leader-reliance syndrome is a major problem within organisations of varying types, as you must surely be aware.  You know more than I do about prayer as substitute for action  more,  particularly within elderly populations. People may tell themselves they have done all they can by praying. It may protect them from guilt about doing nothing.

Is CC ready for DMC, never mind any other community-based project?  Fine new premises might be seen as a solution to a desire to extend into the community.  What has been achieved in the past?  Who was involved?  Who will be around in ten years time to continue any new projects started in four years time?  Where is the impetus to attract younger members into CC?    . . . . 

It is important for the DMC to take off from a CC base.  Not least of the factors involved is laying down a foundation of broad care in practice and not limited to prayer.  Much greater effort must be focused on recruiting CC vols to the DMC project.  I can live with an external Deputy Project Leader.  The DPL is the most important role re startability, continue-ability and sustainability.  What happens if I go into hospital the night before 1 March?  That date is hardly realistic at the present rate of no progress.  Assuming that things might start to happen after the 12th day of Christmas, 5 Jan, there are just eight weeks before 1 March.  Assuming that the newspaper is first spoken to on 5 Jan and first publicity is being read on Weds 11 Jan, there's just seven weeks to hope that new vols come forward, interview them, train them. DBS them and more besides.   Press release going out on 13 Dec.

How does a R & District church-based DFs approach help find vols?  If 30 people become D Friendly, what encouragement will there be for any to become Champions?  These are the people we want to be involved in the DMC wholesale.

8  My investment

Some of the webpage-writing takes place while T watches TV and a lot of the time she is asleep.  Most of them arrive after her bedtime until around 0130.  I haven't kept formal records but there's some £250 worth of equipment.  More to the point is the emotional investment and faith in CC to be involved and I certainly do not want to look elsewhere.  However, CC may decide A) it wants to proceed without me or B) that it is not ready.  If B), can we work together to transfer the DMC elsewhere?

9  Dancing With Dementia  

*10      An amazing book and no one is expected to read it.  If anyone did, they would better understand the extract and why I would welcome its application with T in mind.     here

Is CC brave enough to try a prayer-scrum?

It also contains this   "Dementia is a sickness of society."  Anyone you want to use to explain dementia to CC members instead of me will not broach this topic.  It goes a long way to explaining why there are no DMC vols.  Fear and stigma are tied into the sentence.  . . . . . 


I’m choosing an attitude of dancing with dementia. I’m choosing to be a survivor. I’m choosing to live my life positively everyday. I love the imagery of a couple dancing with dementia. It’s a couple, a care-partnership, in which we move together. We sense each other’s needs, and change and adapt according to the changing music of the journey with dementia. It’s a very expressive way I think, of talking about the care partnership being like a dance with dementia. … as care-partners in the dance with dementia, we both have to learn to LISTEN to the music. What is happening to me, to us? What is the rhythm of our dance with dementia?   Third extract – what it means to dance with dementia  here

All fine words and one can see why medics and others don't believe that the writer has dementia.  T - my wife, certainly is unable to read the text, never mind write it.


Dementia Champions and other speakers do not give out such text.  This one me will.

Dementia Friends – Bookcase analogy  here

10 Conclusion

*11  Ask yourself why no one came forward and engaged T and I as friends except M and K.  However, that was brought to an end.  That was long before the interaction problem emerged. 

How are you both?  People MAY ask but it is a social question.  I used to lecture on non-verbal communication.

Does she take sugar?  There is little base knowledge of caree need within CC membership.

Come round for a cuppa. Never asked.

Our house couldn't take your wheelchair but let's meet somewhere. Never articulated.

My father etc has/had dementia (or similar) and I know what it must be like.  Would you like any help?   Never asked.   Even an offer of advice was not made.  


The situation sometimes in the coffee room on Sundays is that people file past us, so we go home.

That was long before the interaction problem emerged. 

I am not looking for help in the home per our conversation re my hospital session.  I'm looking for signs of a caring congregation.  T is obviously disabled.  What about those who have other non-evident problems.

The downward progression of T's condition is directly related to the number of our friends.  The worse she became, the fewer friends we had.  We now have two friends but they are very busy so we don't see much of them. "When it comes to friends, Marriott is frank.  They let you down."  1 here

What causes loneliness is not being alone, it's being unable to communicate with the people all around.  The more people, the lonelier it is.  2.1.3  here

Alone  Home page here    

Carers who have no one to turn to here   When people  treat you like they don't care here


You will have an answer and I'd like to know why there is no photo board for all the notables within CC.




Update 2 Nov 2016 - Transient ischaemic attack (TIA) here    


The leaflet take-up has been monitored with very few being read.   



07587 165586 on the website does not function.  It is out of date in other respects.  No info on December events.  Still true on 11 Dec.  A few outsiders will plan ahead for Christmas services.  

The obvious link to insert is Ross Dementia Meeting Centre - Home page here


Last post

I have as much as all this to add.  Let there be two-way frank discussion.

Is the Council brave enough to listen to a presentation?  Is apathy top-down?



pagetop       5 12 2016 here

                      DMC situation December 2016 here

                      Dancing With Dementia  here

                      Carers who have no one to turn to here   When people  treat you like they don't care here

                      Ross DMC  volunteers here
                      The Ross DMC set-up meeting here

                      Ross DMC Home page here 

                      Marriott - friends here

                      Alone  Home page here