Dementia: From Dignity To Disappointment

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.

3 thoughts on “Dementia: From Dignity To Disappointment

  1. Maybe some of the capabilities offered by Skype on the PC or Facetime on the smartphones would help Maureen maintain contact. Of course, you would have to execute the programs, but she may be able to comprehend. You would know. When my parents and I lived states away from each other, we would exchange audio cassettes. Your children might be able to make their own DVDs, which you could use and then use again when she gets to feeling lonely.


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