I am beginning to wonder if social services are on ‘Mission Impossible’ trying to deal with dementia.  Members of staff are expected to make an assessment of Maureen’s condition by occasional visits for short periods of time.  They then make decisions about the amount, and type, of care needed. The photograph of the hole in my neighbour’s garage will help me to illustrate the point I am trying to make.

Our social worker chatted to Maureen for a couple of hours on Wednesday morning.   Maureen seemed in good form and relatively lucid for the duration of her visit.  The social worker concluded that Maureen has capacity to determine her care needs when I plan to be out-of-town visiting family.   She accepted  Maureen’s assertion that she is safe to be left to her own devices for considerable periods of time.

Myself and Maureen’s main carer disagree with the social worker’s opinion.  We have seen how easily Maureen’s presentation fluctuates and confusion, and distress, become dominant in her presentation.  This is where the picture on the right comes in.

A short time after the social worker had gone Maureen became very concerned that next door’s builder would soon be knocking holes in our house .  She went out to talk to him to share her concerns.  Fortunately, he was aware Maureen’s dementia and he handled her concerns sensitively.  His father had  dementia some years ago and he is well versed in the confusion that is prevalent at any time of the day.

The social worker hasn’t got a chance to make an informed judgement by chatting to Maureen on the sofa.  I’m sure she knows that presentation varies but she has never seen Maureen when she is ‘acting out of character’.  The list below gives a few examples of familiar incidents from Maureen in action:

• Not knowing who familiar faces are: including myself and Chloe.
• Believing she is living in a Care Home.
• Thinking her immediate family don’t know where she is.
• Trying to boil the kettle with the lid off.
• Being unable to switch on the TV or use the remote control to change channels.
• Failing to understand how to adjust the central heating.
• Wandering away from home and leaving external doors wide open.
• Misplacing keys to external doors.
• Struggling to find her way home.
• Stumbling into things, as her eye sight is so poor.
• Thinking I have gone out when I am in another room.
• Forgetting that the social worker has visited.
• Having no recollection of important discussions that have taken place in the previous half hour.

The social worker is being placed in an invidious position and given an impossible task.  Maureen remains a highly intelligent woman who can still ‘talk a good game.’  She is unaware of her ‘out of character behaviour’ and the social worker has never seen her in action.

It also appears that there may be practical, and cultural,  issues within the social workers organisation.  It has not been possible to get through to her dedicated mobile for the last couple of weeks.   Her number has been unavailable.  There have also been several examples of E Mails not being acknowledged, let alone progressed . It is also possible that her workload makes it difficult to keep to deadlines or arrange meetings.

If those with dementia and their Care Partners are to remain safe, and sane, we need to call time on Mission Impossible. On Wednesday next doors builder gained a much clearer idea of how Maureen was than the social worker.  He had two distinct advantages:  he saw Maureen in action and probably more importantly; he had experienced dementia within his own family.  He knows, from bitter experience, it would be risky to rely on chatting on the sofa for a couple of hours before judging whether Maureen is safe to be left to her own devices.

NB: There will be a further blog today sharing a really positive experience.

Maureen and I have always been fond of ballroom dancing.  I often take her in hold at home and we strut our stuff in the kitchen or lounge.  We are a little out of step following Maureen’s stroke and my bilateral hip replacements.  Some years ago we got to Gold Medal standard with Latin and Ballroom.  We are always taking about rejoining a group of friends we used to go dancing with at a local studio.  Whenever we bump into one couple we always say: ‘we’ll be back’.  I genuinely believe it won’t be long until we are back on the floor and I may just have the courage to lead my Dancing Queen.

A couple of days ago when taking to a colleague from the Memory Service dancing came up in our discussion.  I contact Kelly occasionally, as I do a small amount of voluntary work for Dementia Engagement.  She asked me when we would be along to the Tuesday afternoon Dance Session that she has organised?  I had to tell her that she would never see us on the floor at her sessions.  The reason being quite simple: Maureen doesn’t want to go to activities dedicated to those who have ‘memory issues’ – mustn’t use the term ‘dementia’ you see with the Memory Service!

When I mentioned Kelly’s initiative to Maureen she said: ‘You are not taking me along to make an example of me’.   I had suggested that  we might help Kelly out by taking some organisational responsibilty for Tuesday afternoons.  Maureen made it plain that she would sooner stay at home, alone, and let me do my ‘voluntary bit’.  Within minutes I saw her point.

We will go dancing again; perhaps later today.   I’m sure I only have to put the right music on and we’ll be off somewhere in the house.  When we venture out to blow off the cobwebs at a dance studio, or hall, it will be along with familiar faces.  Attending events put on by the Memory Service, or other well meaning organistaions is, not for us.  We both still have the capacity to choose how we want to spend our lives – we don’t need others organising things for us.

By the way the photograph is of Kevin (from Grimsby) and his partner.  His dad Keith taught us the slow foxtrot a few years ago.  I don’t think we would get a ‘Ten from any of Them’.  However, it would be our version of the dance at a venue of our choice!