When I called to see mum today she was asleep in a chair in the lounge of her Care Home. She looked so.peaceful I decided not to wake her. When I told the.Manager I would come back later later she said she will be asleep then. She also explained that she sleeps because she is bored so she woke her. She also told me how important it was for Mum to drink her cup of tea.

It too me a few minutes to deal with mum’s  boredom with tunes on YouTuse from Frank and Nat. Mum was a revelation singing along to some old favourites tapping her feet and fluttering her eyes. It brought tears to my eyes to see the transition: mum alive and kicking rather than driven to sleep by boredom.

Maureen was in good form yesterday and kept me in stitches for much of the day.  The best giggle of the day didn’t come from watching her dancing whilst holding onto the washing line: it was when she saw off ‘Blackie’.  She said ‘they were playing chase’.  How wrong I’ve been when we have been walking around the streets looking for a lost boy that’s she’s been playing with – it’s her tame blackbird she’s been talking about.

Things were not looking so funny after a late evening walk along the beach.  When we arrived back home she refused to get out of the car as I had brought her to ‘a strange house’.  I left her by herself for a while then took her out for another ride around.  Then the prospect of a cup of tea eased her into the house.  She was fast asleep on the sofa before she had time to drink it.  I bet she was dreaming of chasing that bird around the garden!

When Maureen woke shortly before midnight she was ‘giving me the bird’: telling me to go away in Anglos Saxon.  She was also making it clear that she didn’t think my parents were married when I was born.  How on earth could I be any other when I ‘kept stealing her car and never took her out in it’.  A couple of hours later and my status had changed as she searched for somewhere to sleep before deciding to bed down on the sofa in the lounge.

At six ‘o’ clock this morning Maureen was clearly about to tell me to ‘Buzz Off’.  Finding her freezing cold and my slippers adjacent to the pedal bin in the kitchen I decided upon emergency action to warm her up on the sofa:

Once I presented myself as her Tea Boy with the first cuppa of the day I knew this lad would not be given his Marching Orders just yet!

It is almost three days since I collected  Maureen from her stay in Ashgrove Care Home and I still clearing up the mess.  Thankfully, the visit of Rapid Response on Sunday night has faded in her memory as has the aroma in the bathroom.  Most of the casualties from that little episode have been washed and are ready for use again.  However, there remain several  issues to clear up from our time apart:

• Clarifying how Maureen presented when she was in Ashgrove
• Establishing how Maureen came out of Ashgrove in such a poor state.
• Reclaiming certain items of missing clothing
• Seeking a refund from the provisional bill

Every time Maureen has been into Respite Care I seems to spend ages clearing up.  Once again, I’m chasing my tail as I try to clear up issues that should never have happened in the first place.  The whole process leaves me with real concerns about using Care Homes for a respite break in the future.  It’s fortunate I’m meeting with my Admiral Nurse on Thursday and we can consider better ways forward for both of us!

At half-past five this morning I’m being stretched to the limit as Maureen tries to make sense of her world.  She wonders where the others have gone and why she has been left here by herself?  An offer of a cup of tea is not doing it this morning – all I can do is leave her to rant: good morning Mrs Dementia.

My call to Single Point of Access at 6.30 will lead to a referral to District Nurses so that Maureen’s bowel movements and skin condition can be kept under review.  Once again, I count my lucky stars that we moved to North East Linconshire where there are systems in place to support those with dementia remaining in their own homes for as long as possible.

‘Sleeping Beauty’ has dropped off again and Susie is resting on the window sill.   It’s a beautiful morning so I’m going to tidy up my vegetable plot and keep in touch with things upstairs via the baby monitor.

Heartbreaking:  at 8 ‘o’ clock  Maureen in tears as she grabs me as I return from our garage saying: ‘ I thought you’d left me’.

As a contribution to Dementia Awareness Week I ‘m submitting this short piece to Dementia UK for possible publication:

Admiral Nurses: Rescue Rangers

Any diagnosis of dementia for your loved one is frightening.  When it’s vascular it’s terrifying as there is no treatment for this condition.  When Maureen diagnosis moved from Mild Cognitive Impairment to Vascular Dementia a discharge from our Memory Service followed, along with information about groups and organisations that might be able to help.

I think it was just by chance I heard about Admiral Nurses during a meeting of the Patient Participation Group at our Medical Centre.  Someone I respected was singing their praises and gave me some contact numbers.  Three years and one Admiral Nurse later I’m indebted to my colleague from our PPG.

I’m sure like most Care Partners I’m often in despair, completely at a loss to try to understand my wife’s presentation.  On other occasions, I’m not sure what to do when nothing I try seems to shift my wife from an unattainable focus: ‘I want to go home to live with my parents’ – (who have long since passed).

I’m demanding by nature and our Admiral Nurses are frequently overloaded with my requests for support and advice.  Mel and I are now scheduled to meet every fortnight as I attempt to cope with the progression of my wife’s condition.  I also forward my daily Blog or telephone Mel when the going gets tough: it would be unusual if there isn’t a reply within hours.

IMHO Admiral Nurses should be available throughout the country.  I certainly would not cope with the expertise that is always available despite workloads that are probably exceed anything a professional would be expected to undertake.

Ends

I’m catching up with a member of staff from Navigo in an hour.  Five years ago as the Manager of an Acute Psychiatric Unit, she advised me to ask my Psychiatrist for Day Release.   Returning home for a day was a significant step in my recovery from recurrent depression.  Forgoing basking in the Spa and Sauna for a glass of water is a small price to pay for an opportunity to thank her for that advice!

I spent a considerable part of last week trying to find a suitable place for Maureen to go while I have a much-needed break.  During this time Maureen’s Care Coordinator said to me something along the lines that ‘I wouldn’t find a perfect place’ but hearing on previous occasions that she has escaped or finding her bruised and battered whilst in the care of others is beyond the pail.

It is less than a month since my last ‘Respite Break’ which turned out to be nothing of the sort.   When you get to bed after a long day nudging your wife into Residential Care and the phone rings advising you that ‘she isn’t settled’ the writing starts to appear on the wall.  If you spend the next day seeking to avoid her being moved to an Enhanced Unit that is far from ‘respite’.  Then you are ‘bounced’ into paying almost an additional £100 one to one care through the night the writing is firmly on the wall.   To cap it all, despite an additional member of staff, this establishment continued to fail to get her to bed until the early hours and not at all on the last two nights.

When I  decided to bring her home after five days so she could get some rest things turned from bad to worse.  We had to spend  8 hours at Accident and Emergency at our local hospital to gain Maureen relief from extremely painful constipation.  This problem was visually obvious once I encouraged her to take a bath.

After our meeting with the new Manager at Ashgrove on Friday, I’m optimistic that this time I have found a solution to actually having a Respite Break.  All I have to do today is to get Maureen there with the minimum of distress and then leave them to it!

Maureen has now spent her second night at Homefield House.  It was no simple matter to get her there: it was 4 ‘o’ clock on Wednesday before we were able to persuade her to put her foot in the door.  Initially, she appeared to settle well then her behaviour during the early hours became extremely challenging and disruptive to fellow residents.

The phone lines were busy yesterday as we tried to find a way of minimising Maureen’s distress and enabling me to have a much-needed break.  At one stage it looked as if she would need to be moved to an Enhanced Unit where staffing ratios would have been more supportive to her needs.  However, I responded positively to the suggestion to pay for some one to one support in an effort to help her settle.  The news this morning is slightly more positive with Maureen being abusive but less aggressive during the night and eventually going to bed at 2:30 am.

I am getting wise counsel from a number of quarters during this challenging period in my life.  It is reassuring that staff from Social Services, Admiral Nursing and the Alzheimer’s have all played a significant part in helping me to keep my cool as we tried to find a person-centred approach to our dilemma.  I always know that empathy and skilled professional help is available at the end of the phone whenever I need to mull over my thinking.

I’m hoping that Maureen will continue to settle for the remainder of the week and I can make my informal retreat at the Madhyamaka Buddhist Centre for a few days from Sunday.  How profound that the focus of their meditation programme is about to be:

If none of our local Care Agencies can provide staffing for a 72 hour period then an option would be to put Maureen in a Care Home for Respite.

The article below, which I have reproduced with the with the kind permission of Roy Lilley, convinces me that this is a rather risky option: