On Wednesday I held the hand the hand of two people who have been very important in my life: my mum and my brother.  Mum is now in a Care Home with a diagnosis of vascular dementia.  My Brother John is in a Nursing Home with a diagnosis Alzheimer’s. Today’s post shares glimpses of Wednesday’s visit to Coventry .  The picture below was taken three years ago, when I took mum to see John in his Nursing Home.  Even at that stage of his condition he was unsure it was his mother sitting next to him.

When my daughter and I arrived at my brother’s Nursing Home he sat in the lounge, adjacent to a couple of his fellow residents.  Nan who normally walks the corridors, holding my hand, was fast asleep in her chair on his left.  A gentleman to his right lay on a trolley continually moving his legs.  Other fellow residents were on manouevers: wandering around the lounge.  Carers were strategically placed monitoring proceedings: ready to intervene if things got out of hand.

John looked clean and tidy but a shadow of the handsome man in the picure above.  It doesn’t help that his false teeth have gone missing so many times that he no longer has them in his mouth.  I encouraged Lisa to sit with him for a while, as he has always been extremely fond of his niece.  I watched from a distance as his face lit up with an attractive woman sitting holding his hand.  At my suggestion Lisa put some rock and roll music on her phone.  I’m sure he tapped his feet, and was back to jiving at the Locarno with us all trying to catch a glimpse of him on Saturday lunch-time television.

I took over from Lisa after a short while.  John looked troubled as his eyes scanned the lounge watching the antics of his fellow residents.  Very occasionally he smiled, and tried to mouth a few words.  I held his hand and tried to say something that might have meaning.

Lisa and I stayed with John for about 20 minutes.  We caught up on his welfare by chatting to staff: he had fallen twice in the last few days but paramedics had established that the consequences were not serious.  Lisa was crying as we made our way back to her car, I bit my tongue to keep control of my emotions.  We both needed a short walk before our onward journey to see mum.

We decided that it would be better for me to visit mum by myself.  Lisa had visited a few days earlier, and mum wasn’t really sure who she was.  I think mum recognised me as soon as she caught sight of my face.  I took the precaution of saying who I was, after she had been walked gingerly into the visitors lounge on the arm of a carer.  Her opening question, as always, was: ‘Have you come to take me out in the car?’.  This question was repeated several times during my visit, despite my explanation that I had travelled down by coach.

Mums hair had been washed and set earlier in the day.  When I looked at her I thought I hope I look that attractive if I make 94.  You can see what a stunner she was as a young mum in the picture opposite; with John at her side, and me on her lap.

I joked that she must have known I was coming, and had a hair do especially for me.  Mum responded with her question about going out.

It wasn’t easy to find much to say, and to my disgust we couldn’t repeat our singing session of the last time we were together: no signal to my phone!  However at one stage mum burst into song with: ‘Don’t Sit Under the Apple Tree’ .  I don’t know why but I responded with: ‘What Shall We Do With the Drunken Sailor?’

I stayed with mum for 40 minutes or so.  My hands were obviously warmer than on my last visit as mum didn’t recoil when I reached out to hold hers.  Without music we both found it a struggle to find anything to say, and mum closed her eyes on several occasions; dropping off for several minutes at a time.  As the time to catch my bus arrived it was quite a struggle to ease mum out of the chair, and help her to shuffle back to her place in the Resident’s Lounge.

Mum’s home seemed very quiet on the day of my visit.  Carers were busy attending to the personal needs of residents.  Some familar faces were not around.  Joyce who normally has much to say sat quietly in her chair.  Mrs A, now over a hundred, normally has a flirtatious word  was not in her seat.

My travel home was arduous, with delays leading to the journey taking much longer than it ever had before.  It made me think of taking the car next time and being able to say : ‘yes mum I’m going to take you out today’.

When I arrived home at 9.30 I met one of the carers who had been holding Maureen’s hand in my absence.  We caught up on the day, and Maureen mentioned that she had been entertaining her companions with circuit training in the garden.  As you will see from the photo this cold snap has not prevented her from taking the advice to keep walking very seriously: she’s out there in all weathers!

When the carer had gone Maureen seemed genuinely pleased to see me.   I wondered where the angry woman who had berated me when I phoned her from Leicester on my outward journey had gone.  She had clearly forgotten telling me to come home, rather than continue with my trip to Coventry

There are three lessons from my trip to Coventry.  Firstly, when  I go to see John again take him some chocolate as that always puts a smile on his face. Secondly, try to make sure that I have music to hand on my next visit to see mum: it fills the long silences when we both have nothing to say.  Finally, never again phone Maureen when I’m away for the day again: it only adds to her confusion, and causes distress.

There’s only one way to close this post.  All together now:

I’m posting earlier today as I have a coach to catch at 7am.

I became rather concerned on Monday when I heard that there would be some new faces looking after Maureen today.  At first I wondered about the wisdom of leaving her for 14 hours ,mostly with people she has never met before, while I visit family in Coventry .  Then I remembered the work that we had done to provide some ‘Handy Hints’ for carers.  Any newcomers will now have the benefit of some basic guidelines on how the ‘old hands’ care for Maureen.  The guidelines are  predominantly about preserving independence, and dignity.

The other thing that is reassuring is the quality of the support team I now have available to me.  Within the last few days I have received good support from a:  neighbour, Social Worker, Admiral Nurse,  Chemist in addition to carers. They have all played a significant part in helping me to cope with Maureen’s changing presentation.  It’s so good to know that I only have to:  call next door, walk around the corner, switch on my computer, or chat with our carers and informed support is available.

There are three of pieces of advice that are particularly pertinent from the last week.  Firstly, I need to take time-out to see my own family.  Secondly, not to absorb what Maureen is going through: otherwise it will overwhelm me, and disable my effectiveness as a Care Partner.  Finally, Maureen still has some capacity but that doesn’t mean that she is necessarily capable of making rational decisions about her own welfare.  The advice from Yvonna our chemist about not absorbing Maureen’s presentation, was particularly poignant yesterday afternoon.

When I reminded Maureen of my plans to visit Coventry today it caused quite a reaction. Maureen began her normal routine of coming with me in: the car, coach or train.  She even suggested that she could  be dropped off at her sister’s in Nottingham, and I could make the onward journey alone.  When I outlined the impractical nature of her suggestions she became very hostile.  Following a sleep on the sofa she said she was surprised I had already got back from Coventry. I chose not to contradict her confusion, and fabricated answers to her questions about how mum and my brother were.  An hour or so later as she was preparing for bed she said she was surprised I was here, as she thought I was staying overnight in Coventry.

Unfortunately, all is not well in my birthplace: Mum has a heavy cold, and my brother has recently had a couple of falls in his Nursing Home.  His wife Jean has flu and hasn’t been able to visit for a few days.  I am hoping that my lunch buddies:  daughter Lisa and sister Jill, are well enough to make our date at the Red Lion.

Unfortunately, reading the writing of those diagnosed with dementia doesn’t help me with a particular aspect of Maureen’s presentation at the moment.  Whenever she wakes up from a period of rest, confusion abounds and she thinks it’s morning.  Yesterday she was also worried about where the children had gone.  She wanted reassurance that they were at school: most of their children have now left university!

My attempts to persuade her that it was time to go to bed at 11pm failed, and she insisted that she always slept on the sofa.  Eventually, at 1am I managed to cajole her to climb the ‘wooden hill’, and fall into bed.  These patterns of behaviour are becoming more prevalent and I need to think of a way of breaking this cycle.

This morning I am hoping that Chloe will be able to persuade Maureen to have a ‘Pamper Day’.  Chloe can assume the mantel of beautician, and encourage Maureen to wash and style her hair.  If the going is good Chloe might even persuade her that it’s preferable to wash her hair and shower at the same time.  It has been a couple of weeks since Chloe has been successful on that front.  To make things easier I will go out in case Maureen sees me as a ‘strange man’ in the house: that might just ease things along.

We all do our best to help Maureen to enjoy her days, and it sometimes difficult to know what to do for the best.  She can remember how to carry out household tasks but seems to have forgotten how else to fill her time.  Trying to keep her occupied all the time is exhausting but left to her own devices she often chooses to ‘rest her eyes’.  How on earth I am going to break this cycle, and wrest her from the sofa when it is time to go to bed I am yet to discover.  Leaving her alone late at night downstairs while I’m in bed risks her waking and feeling she has been deserted.   Then she may become extremely distressed, and anything could happen..