Maureen continues to be uncooperative with the regime in the Konar Suite.
She has ‘sent the medical staff to Coventry’ and refused an ECG yesterday.
Perhaps, this is part of her strategy to get back home to the Midlands.
She is very angry with me for ‘telling lies’ that have led to her incarceration
I look forward to hearing the plans of the Multi-Disciplinary Team this morning
The struggles of the last few months all seemed worthwhile yesterday when our visitors from Occupational Therapy made it clear that they supported our approach to ‘seeking the good life’. They were impressed with our extension and how we have attempted to prepare for what might lie ahead. They also supported how I attempt to resolve issues of independence and safety. Once we have made a couple of minor changes to our set up OT feel that we have addressed all predictable risks.
Maureen was in exceptional Hostess Mode all day. Her intelligence and humour shone through as she showed OT the ropes. She continued in a similar vein when in the company of my sister and brother in law. In fact, she was in such good form that there were occasions when some observers may have questioned her diagnosis of dementia.
Maureen has paid a heavy price for the overstimulation that I subjected her to yesterday. She is now hyperactive and has not slept all night. I should have left things as they were with my sister visiting today. I’m paying a small price for my naivety as I try to support a very confused wife this morning.
We appear to be on a Cruise Ship again this morning. I hope Maureen is not too disappointed when we dock at Grimsby: we couldn’t possibly pull into Cleethorpes with the tide going out!
It’s fortunate that family will be arriving shortly as I could do with a helping hand or two. I’m being outrun this morning with Maureen being as confused as I have ever seen her. She woke at 2.30 singing ‘God watching us’ at the top of her voice. I soon realised where that had come from:
However, I declined another early morning YouTube party and encouraged Maureen to go back to bed: I’m getting too old for these raves. She managed to drop off again but I had no suck luck so I carried out an early morning Spring Clean – it was surprising what I found stashed away in the most unlikely places.
I can’t seem to settle her today, she is either ‘packing to go home’ or sitting in an armchair looking distressed. Perhaps, she will drop off on the sofa a little later and wake up in a different mode. I was hoping to get out when our visitors arrive but I fear that may only add to her confused state.
Maureen was complaining this morning that ‘leaded windows make this place seem like a prison’. When I suggested that we could change them she said ‘it was not worth it’. Her comment led me to think what is worth trying to change on this hazardous journey? Many argue that dementia is a progressive condition and decline is inevitable: others see that as a negative approach which Kate Swaffer has termed Prescribed Disengagement.
Anyone who follows this blog will know where my money is and will have read my feelings about Prescribed Disengagement. Perhaps there is little point in having clear glass in our windows but it is worth trying to move some things forward:
It is worth it to progress the above irrespective of how you view dementia.
As I I hadn’t E T at my disposal I rang Maureen’s Youngest Son at 10 ‘o’ clock last night and it did the trick. He phoned back and his mum gradually reduced her pleas to be taken home so she could look after her aged parents faded. A short while later she dropped off to sleep on the sofa; exhausted from a hectic couple of hours. I took to the spare bedroom and Maureen woke me to tell me how relieved she was that she had found me.
My earlier attempts to solve the ‘take me home’ crisis had fallen on stony ground. A late night drive around Cleethorpes and Grimsby had not done the trick. On our arrival back home Mrs Dementia was out in force with threats and accusations that I would be in real trouble once the authorities were aware of how I had kept her against her will in a strange house.
Maureen was very frightened that I had left her when I took a bathroom break early this morning. I’m hoping that a pain relieving lozenge and a cool drink will sooth her sore mouth so she might get a little more rest. The chronic condition needs further diagnosis if we are ever going to find a solution.
Last night was a disappointing end to a positive weekend. Maureen had been in great form on Saturday trying to help her sister who was in a sorry state. It is possible that hearing her sister talk about her own memory problems and seeing her in such a pitiful state has shocked her – creating a focus on her own shortcomings. Visiting her little sister in Nottingham was always a risk and may have been a bridge too far on this occasion.
Girl Monday will be her in a couple of hours and I will seek her counsel about recent events. She is unique: she understands dementia and knows Maureen. I also have the luxury of being able to chat things over with my Admiral Nurse and staff at the local Alzheimer’s Society if Maureen remains unsettled.
NB: From now on I’ll print of my posts and add them to the Girl’s (Carers) daily briefings.
We had a relatively peaceful day yesterday. I pottered in the garden for most of the day, while Maureen busied herself in the house. Our afternoon siesta went well with us both having some shut eye. As we began to prepare our evening meal I decided to pop some vinyl on the record deck.
Rod Stewart was belting out some of the old favourites as we ate our food. After our meal I introduced the Everly Brothers, followed by Anne Murray. As you will see from today’s Good Music page Anne Murray made the charts because Maureen sang along so beautifully to: ‘For No Reason At All’. I closed down our music session at 8 pm, so that I could watch some television.
Maureen didn’t want to watch T V, and filled her time in a number of ways. I popped out of the lounge when the adverts were on, and noticed that she had been involved in some light ‘packing to go home’. Then she decided that it was time to add to the underwear to what she had been wearing all day. I found the missing bra, and she went away to try it on. She then spent about an hour trying on various permutations of shoes.
Maureen clearly can’t remember what to do when she has time on her hands. That is often when ‘packing to go home’ takes place. When that has been completed, or abandoned, clothes become the issue; particularly missing garments. The other time filler is the incessant search for missing items: it’s a wonder that the hunt for spectacles didn’t feature last night!
I clearly need to give Maureen more support on how to fill her time. It is unrealistic that she will want to join me in my endeavours all of the time. It might be a tad ambitious to try to direct her into her some of her old hobbies, and interests. My holding position has to be as resident D J, running a slightly longer session tonight. I might even chance my arm and take her in hold when the slower numbers are on the deck!
I am really grateful to several good Samaritans who came to my aid yesterday, in my hour of need. As I made my way back to my car inGrimsby I began to feel as and stood restingat the side of the road. A gentleman who was passing by enquired if I was alright escorted me back to a safe haven. The girls in reception of my solicitors took care of me until I felt well enough to drive to my doctors for assessment.
Nina a Practice Nurse delayed her lunch, to discover that low blood pressure was causing my discomfort. Chloe Maureen’s carer contacted Michelle at the Care Agency to arrange emergency cover to step in as my return home was going to be delayed. Apart from my mobile phone creating problems everything else worked like clockwork.
All of the people involved rescuing me in my hour of need stepped up to the plate without hesitation, as did other cogs in the wheel that I have not mentioned. The gentleman who stopped in the street just happened to mention that his wife had lung cancer, and was on palliative care. The women in the solicitors were all working away like beavers. My friends at Clee Medical Centre were all busy trying to deal with the pressures within the NHS. Chloe needed to get to her next call, and I’m sure Michelle at Hica was in the middle of her daily juggling act: matching need with scarce resources.
There is only one word I would want to say to you all: ‘THANKYOU’, for keeping Maureen safe, and reassuring me that my ticker wasn’t about to give out on me just weeks before I have had my three score years and ten!
I also need to apologise for the extra work I caused so many people yesterday: I needn’t have been rushing around in Grimsby. My apology is based on failing to understand dementia. My missions to try to find Maureen suitable clothing are pointless. The hours I spend trawling clothes outlets are a complete waste of time. The problems are not clothes: the problem is Maureen has dementia. That means that only certain clothes will ever be suitable for her. They may look worn or ill-fitting but if she is happy in them that is all that matters. The days of Maureen looking like a well-dressed woman have gone: she has dementia!
On the underwear front, again I am wasting my time. There will be days when nothing is comfortable: everything will irritate her in one way or another. Things that she has worn for days will be too tight, and scratch her tender skin. On those days I need to provide TLC and not go on shopping expeditions for suitable attire: Maureen has dementia!
When I returned home shortly before 2pm Maureen was still in bed. She had refused to eat or get out of bed for Chloe. Apparently on occasions, she used some unpleasant language to express concern that I had ‘gone out to enjoy myself yet again’. She showed some concern about my dizzy spell in town, and carried on as normal for the rest of the day.
Early evening I left her to tidy up the kitchen; complaining about a shortage of staff in this Care Home. I realised l my mistake later when I saw the state of the kitchen. When I went into the utility room I saw what else had been keeping her busy: ‘packing to go home’, as you will see from the photo opposite.
There is a clear lesson from today: Maureen has dementia – forget that for one moment and I’m in trouble!
Anosognia and hiraeth two extremely important words in any attempt to understand Maureen’s presentation. They are recent acqusitions to my vocabulary, and would certainly warrant a challenge in any game of scrabble.
Anosognosia defines a reluctance to accept a medical diagnosis.
Hiraeth explains ‘wanting to go home syndrome’. 
I see little point in encouraging Maureen to accept that she has dementia. I can fully understand how she wants to go with: ‘I lost my memory once and it was frightening’.
Following our trip back to Nottingham, Maureen’s home town, one destination has been ruled out as a better place to live. It is possible that the same job will need to be done on Coventry.
What is going to happen next on our journey with dementia? I have to confess I have no idea where we will be going. It doesn’t worry me in the slightest when you have a Champions League Winner in your midst it doesn’t really matter. All I need to concentrate on to adulterate a Strictly Come Dancing phrase is to: Keep Listening
It had to abandon all my good intentions about how to spend the todayday: Action Man frustrated once again. Maureen was quite adamant how she wanted to spend the day: packing to go home. During the morning she emptied wardrobes, and drawers, in preparation for the homeward treck. She pursued her goal with some rigour, with piles of her belongings all over the house.
I tried my usual distraction techniques to no avail. Not even my best impressions of the ‘Fab Four’, along with their music on the CD Player changed things for long. Even a smooch to ‘Yesterday’ in the kitchen made little impact on her focus. Although she did comment I was becoming a little forward in my movements. As a last ditch effort I managed to persuade her to join me for a catch up rest in bed late afternoon.
As I have said before ‘home’ is that place in the past where dementia did not have an impact on Maureen’s life. A place where she reacalls being an idependent woman; not saddled with memory loss and its attendant difficulties. Who can blame her for packing? What a shame the map is sadly unavailable.
Apologies for this being the third blog of the day. Tomorrow there will only be one blog about my Admiral Nurse Heather is currently packing her bags before emigrating to New Zealand. She deserves a special focus in my blog: as she has shone as a beacon of good practise.
I have mentioned before the words of a Consultant at the Memory Clinic following Maureen’s diagnosis: ‘You will have to get used to the new reality.’ At the time I hadn’t got a clue what he was talking about. Eighteen months down the road and Maureen’s reality can be grasped from her words below:
The above list is only a snapshot of the new reality.
The Counsellor at our Medical Practice puts it in a nutshell.
Dementia means having no concept of PLACE, PERSON or TIME.
Dementia: Sharing The Good Times 