I think our experience of Dignity Action Day was extremely positive.  I’m not sure that we, or others, behaved any differently from any other day but it is interesting to look at Monday morning from that perspective.  

Early in the morning I stepped into my role as Maureen’s Tea Boy, and provided liquid refreshment on demand.  I think the first pot went cold so a replacement was provided on to ease my wife’s dry throat.   Maureen seemed sleepy, and dropped off almost before her mug had hit the bedside table.

Chloe arrived on the dot at ten, with Maureen still in the land of the nod.  We chatted for a while about the best way of handling Maureen’s presentation.  I never cease to be amazed at Chloe’s understanding of the nature of Maureen’s dementia.  We hatched a plan for carers to have specific jobs on the days that they call, to avoid Maureen’s concerns about being ‘baby sat’.  

Chloe also does her best to protect my welfare.  She is very astute after years of witnessing Care Partners struggling to escape the bonds of dementia.  Her message is always that: ‘you need time for yourself; otherwise you will feel like a prisoner’.

I mentioned to Chloe the supportive nature of my contact with Sue our social worker prior to her visit.  We are both relieved that we now have a social worker who is competent, and compassionate.  Within half an hour of my request Sue had set in place arrangements for me to visit my daughter in London, later in the month.  On her first day back at work from a holiday she had also made time for a chat about a tactical approach to Maureen’s presentation.  We are agreed that Maureen is ‘unsettled’ at the moment, and we all need to tread carefully.

With Chloe in residence I went to sort out the servicing of my car.  I discussed some additional matters that needed to be looked at including the air conditioning.   I was amazed that Warwick remembered that Maureen had a fragrance intolerance, and we needed to avoid using certain cleaners.  He also found time to ask me how Maureen was ‘holding up’.

Unfortunately my call to see Maureen’s Aunty Clarice was unproductive.  I found out later in the day she was sorting out funeral arrangements for Dennis.  I will to find time later in the week  to pay my respects.  It’s good to know that there is a consensus between; Chloe, Clarice, Sue and myself on  not giving Maureen news of Dennis’s passing.  

As I neared home I caught site of Maureen hot-footing it down the road.  I slowed down and we exchanged briefly as I caught sight of Chloe in hot pursuit.  I drove on and checked that matters were in hand, and returned home.   The walkers arrived home a short while afterwards.  A quick perusal of Chloe’s notes for the morning reveals: Maureen seeming confused, and lost, as she wandered into other peoples’ gardens on her journey.

As the ramblers took on liquid refreshment there was a knock at the door from a neighbour.  Pat from across the road is 85, and has dementia.  She was enquiring if flowers destined for her had been delivered to us by mistake.  I encouraged Maureen to deal with the enquiry, and she used her natural warmth to ease Pat’s concerns.  She spent quite some time chatting to Pat.  It would have taken a very astute obsever to see that these two women were not totally in good shape.  Pat saw that we had ‘the Nurse’ in residence and apologised for intervening in our morning.  Maureen suggested she should pop across to see us more often.  Our ‘Nurse’ departed shortly afterwards after a morning full of dignity and respect.

The above passages were written early this morning when Maureen suggested it was time for breakfast: that was the dignity bit.  Then disappointment has arisen 3 hours later in the day with a familar theme:

Maureen has awoken; crying that her family never contact or visit her.  She wonders why her brother and sister in Nottingham never phone.  She has asked me if I have brothers and sisters who contact me.  It’s fortunate that one of my sisters and her husband is visiting at the week-end, as Maureen has said: ‘at leaste she’s got my family’.

Then she remembers her brother did come to see her, following the intervention of a lady she asked to help.  Maureen says her relatives don’t know that she has got me to look after her.  Then she says that now she is better she will contact them: maybe phone or write a letter but she is unsure where they live.

It’s upsetting to hear her return to this theme so often.  Sometimes she is puzzled why her mum hasn’t been to see her when she has been is so ill.  Today her focus is on those in Nottingham, and there is no mention of her sons who live elsewhere.

I think family have gathered that Maureen is uncomfortable on the phone, and calls have dried up.  That means that she has little contact with immediate family, who all have busy lives of their own.  The distance that they live from here means that they now spend longer travelling than visiting, as Maureen tires so easily.

We need to come up solution to Maureen feeling isolated from her family.  The distance they live from here and their busy lives should not become a barrier to the contact she craves.  I need to take advice on what to do about Maureen’s feelings that her family have cast her adrift.

One of the things that I need to do over the next few days is to review our daily routines.  I also need to watch what buttons I press on the keyboard as I have posted this a couple of hours too early!

The article that follows is something that should be helpful as I try to work out what works best here:

‘By Bob DeMarco Alzheimer’s Reading Room Establish a Daily Routine Nothing is more important than the daily routine. Persons afflicted with dementia do not have a good sense of time. As a result, they tend to fall out of the daily routine they used before the diagnosis. You can look back to what it was they were use to doing; and then, incorporate some of those things into their daily routine. As you establish a routine take it one step at a time. Eventually you should come up with a routine that covers the entire day. Do the same thing, at the same time, every day when possible. If your love one read the newspaper in the morning, organize the newspaper and put it in front of them. Ask them to read to you from the newspaper. If your loved one went to the store at a certain time of the day – take them to the store. You should get out and around every day. Walking is good if they can do it, and the weather permits. A ride in the car is always good. Talk about the scenery or whatever you can. Keep you loved one engaged in conversation. Think about what your loved one liked to do. Then go do it. If you need to modify the daily routine a bit for them, modify it. Make things more simple to do if necessary. Incorporate Activities into Your Day If you incorporate activities into your day –

This will set you free.

The more activities the happier the afflicted becomes, and the happier you become’

When I was in Coventry on Monday I managed to confirm that Maeve our own Songbird would be here today. 

I met Tom, her dad, in the Red Lion and we chatted about things, and their impending visit.  Maureen was thrilled when I told her that she would be seeing Maeve today, even though she will remind Maureen of the gap in her life since Denise died.

I think I am going to go for it today on a number of fronts.  Maeve’s presence gives Maureen an opportunity to relive happy events from her past.  If the going is good I will encourage Maureen to trim up for Christmas.  I’m sure that decorating our house – even at this late stage – may well help to bring back such lovely memories for Maureen.  I have already marked Tom’s card on this front and hope Maeve will be compliant.

Today might also be an opportunity for a bit of forward planning.  When Denise was alive, her and Maeve were regular visitors to our house.  It was unusual if we didn’t see them every six weeks or so.  Maureen really misses Maeve and the happy memories of Denise.  It would really help if we could sort out the next time we will see them before they leave.

It looks like an interesting day ahead with all sorts of possibilities.  I think I read somewhere that with dementia around strategies were more helpful than plans.  I’ll let you know tomorrow how my strategies work out……

I’m back sooner than expected as Maureen is in panic at the prospect of today’s visit.  She doesn’t want Maeve to see her looking a mess, and a clothing crisis is underway: nothing fits once gain.  I need to be at my level best to sort this one out.  I have disconnected the landline to avoid any further clumsy interventions in our lives.

I think the first song Maeve ever posted on YouTube sums it all up: Panic Chord.