Dementia: The Missing Link

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Great news: a Care Coordinator for Maureen is only a phone call away.  This arrangement has resulted from a significant interdisciplinary team effort to address a missing link in the support available to Maureen.  Her diagnosis of vascular dementia led to a discharge from the Memory Service, as there is no medical treatment for the condition.

I am optimistic that a Care Coordinator may help Maureen to address her concerns that she has been left ‘up the creek without a paddle’.  She frequently says that she has been offered no treatment for her condition.  It remains to be seen whether she has the ability to retain, or the willingness to respond, to what might be placed on her table: time will tell.

I’m also hoping that the Care Coordinator will be someone who I can bounce ideas off.  As ‘the Manager of this Care Home’ (as Maureen often sees it) I would welcome the opportunity of chatting over my approach with someone who is on the case and is seeing what is going on here first-hand.

Maureen is still high from our trip to Nottingham on Saturday.  I have stuck a couple of photos on the doors of kitchen cupboard as a reminder of being with her sister.  Her brother phoned last night and hearing her recount her efforts to support her sister was heartening.  I have provisionally booked an overnight stay with her brother towards the end of the month to carry on the good work.

 

Dementia: Y S Phone Home!

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Image result for Please Phone Home PictureAs 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.

Dementia: What Could You Fix?

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What could you fix?
News and Comment from Roy Lilley

 

Before Xmas I linked to this story about NHS car-parking charges.  Out of the blue I got an email and had a follow-up conversation with a charming lady.  Here’s the story.
‘No one will ever know how I felt that night… walking out of the ward… along the soulless corridors, across the concourse into the car park.  I found the parking ticket in the bottom of my bag.  It was creased up, I smoothed it against the face of the box and fed it into the slot…
Ninety eight pounds….
John had taken a long time to die…
‘Dementia.  He died just before his seventy seventh birthday.  Two days before Christmas.  I’d been with him for five days.
Watching, as every component that made him the dad, the husband, the runner, the graduate, the scientist, the inquisitor, the friend, the lover, the lifelong companion… closed down.
Inch by inch, sense by sense, slipped from his grasp.  He forgot how to speak, forgot how to eat, he forgot how to see, he forgot how to drink, he forgot how to live.  He forgot how it all worked and surrendered into the arms of Morpheus. 
‘I panicked.  Where would I find 98 pound coins?   I pressed the help button on the machine.  A recorded voice said; ‘Out of hours I should call…’ a mobile.  I had no way of remembering the number or writing it down.  My phone was out of battery…
What would John have done….
I walked around the dark, empty car park.  Tears running down my face.  I found the last remnants of a tissue in my pocket.  I didn’t think I could cry anymore.  
 
Neon lights flickering, pools of darkness.  Back on the ground floor I found a machine that took credit cards; drove home.  Parked on the drive. I sat for a while and eventually put the key in the door.  I was on my own now.  I burst into tears, again…
Holiday photographs, clothes, magazines, books.  A time capsule of a life together.
‘I had to go back to the hospital the next day.  The car park, again.  
I went to the ward.  The shifts had changed and they didn’t know who I was.  They sent me to an office.  It was just after one o’clock.  Lunchtime.  I had to wait for an hour until it opened.
They weren’t ready for me. There were phone calls, patronising looks and a woman who apologised for calling him James.  Apparently, I should have telephoned.’
This story gave me an intimate insight.  
However good the the care, whatever they did… if you think the NHS is all about doctors and nurses; it’s not.  Everyone plays a part.
Which bit of this could you fix?
How about that there is no treatment for vascular dementia and it is likely to be mistakenly looked at from a Mental Health perspective.  All I can ever do Roy is keep banging the drum based on our experiences on this unforgiving journey!

Dementia: ‘Please Cut Us Some Slack’

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The postponement of today’s Best Interest Meeting may well have been an inconvenience for some people but I want to argue that it is a positive development.  It is an opportunity to ‘cut us some slack’: to give us time to demonstrate that we are gradually finding a way of living beyond dementia (Swaffer).

My simple assertion, this morning,  is that it is in our Best Interest to give us a little more time to enjoy our lives together with minimal interference from others.  I’m very happy to have ‘behind the Chair discussions’ to agree how developments might be monitored.  Apologies for using a ‘trade union’ phrase for how I hope to progress matters but ex-shop stewards never die: they just go white on top.

My suggestion is to put the BIM on hold:  giving us three months to show our Spring Term Programme is working. Sorry again for resorting to old parlance but we worked together organising Adult Education Programmes for years.  Yesterday’s post indicated that music and foreign languages will feature this Term and there is more to come.  We have already piloted chauffeur driven away days and have been talking about short breaks together, rather than traditional approaches to respite.

Anyone who has seen or spoken to Maureen recently will have seen a positive change in her presentation.  I know that my wife can never return and Mrs Dementia is only ever around the corner.  However, the ‘student is learning’  and is beginning to grasp how to deal with the fact that there are now ‘three people in this marriage’. What a shame I have a lovely photograph of Maureen with Princess Diana’s ex-husband and that would have been a fitting way to end this post!

 

 

Dementia: Distraction and Redirection in Action

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I had to pull out all the stops yesterday to try to ‘settle’ Maureen, as they say.  She struggled in the morning when Girl Wednesday was here and I had to lock down for a while to keep her within the four walls of our home.  During the evening, her restlessness continued so I decided to try a little musical distraction and redirection, by attempting to play my ukelele.  Once again YouTube came to my rescue with an introductory lesson that included singing this song from Bob Marley:

We both love reggae; are fans of Bob Marley and were familiar with this song.  In many ways, it epitomized what had been happened earlier in the day with the cancellation of the Best Interest Meeting.   It would be wrong to share too much detail here but Maureen’s right to have an Independent Advocate is now being processed.  The suggestion that I might fulfill that role in addition to being her husband and Care Partner, smacks of overload.  However,  I’m optimistic that a pragmatic approach to discussing Maureen’s welfare might develop in the next few days that could result in the  BIM becoming redundant.

Returning to the theme of distraction and redirection, I pulled another rabbit out of the hat, last night, when Maureen was on a comfort break.   I found an Introductory French Lesson on YouTube and exchanged simple phrases on her return.  Maureen has always been a good linguist and her French is far better than mine but she was kind about any mispronunciation

Towards the end of the evening we moved onto Maureen’s favourite musical and sang this one, along with many others, together:

There’s only one way to describe how things are this morning: comme ci, comme ça as Maureen has woken a short while ago wanting her mum.  I have asked if she would like to go to Nottingham today, to see her family but she is ‘too tired to travel anywhere’ and has returned to sleeping on the sofa.

Dementia: It’s A Farce

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I have decided to follow my dear old dad’s advice to his children: ‘tell the truth and shame the Devil’.  In my opinion, the Best Interest Meeting scheduled for Friday, to discuss Maureen’s future care and accommodation, is waste of time and public money.

My experiences of a Best Interest Discussion have not filled me with confidence.  Apologies have been forthcoming but I’m far from inspired with the scuttling around that is going on as professional staff attempt to get their house in order for Friday’s meeting.    I hope that such busy people are not overlooking the simple fact that Maureen wants to stay at home and I’m happy to continue as her Care Partner.  

My suggestion is that any review of Maureen’s care takes place with those people who are directly involved in her wellbeing.  What is the point of discussing such matters with those who only have an occasional involvement, and a  passing interest, in her welfare?

To keep within the spirit of my dad’s advice I would respectfully suggest that the Best Interest Meeting is little more than a farce and a very expensive one to boot!

Dementia: A Friend In Need Is A Friend Indeed!

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Image result for A Friend in need is a friend indeed pictureMaureen decided to take matters into her own hands on New Year’s Eve and find her own friends.  She had a great time in the morning in Freeman Street Market where she wandered at will chatting to stallholders.  When we moved onto Aldi she was equally at home as we topped up on basics.  We went with the flow in the afternoon when one of us left a tap on in the kitchen.

Maureen couldn’t cope with my frustration at the water level in the kitchen and fled the scene.  I found her in next doors garden and our neighbour coaxed her back home.  Then she walked out again; reluctant to have anything to do with mopping up – something she was adamant was not of her making.  I tracked her in the car for a while before shepherding her in the direction of home. Unfortunately, she took a wrong turning and another thoughtful neighbour steered her back home.

We declined to see the New Year in and were in bed before 8 pm.  However, some kind neighbours decided to wake us at midnight with their firework celebration of the New Year:  I’m not sure we regarded them as our friends!

I’m clearly not Maureen’s friend this morning.  She woke suddenly at half past six, shot out of bed, seeking ‘our little girl’ and went on to tell me that she’d ‘been in a black fog for two months’ continuing with ‘you are nuts and should have your adventures when you were at school’.  It is difficult to predict what Maureen would call those who are driving the need for a Best Interest Meeting on Friday.  We all know the law -The Mental Capacity Act included – can be an ASS but I would think ‘NUTS’ would be too kind for those people behind the need for such a wasteful formal gathering on Friday!

All I can do this morning is give Maureen space and hope that a cup of tea, later on, will clear the air so two really good friends can enjoy a peaceful day together.  I also need to advise professional staff, once again, to stay away from our home as Maureen is still reeling from our social worker’s visit on Friday.  She keeps asking ‘what did that ginger haired man want: what was he trying to find out?’

My priority remains to minimise Maureen’s distress. I need to try to try to calm her down, help her feel safe and ensure that we are only visited by familiar faces for a while.  Thank goodness Girl Monday is here at 10 am: she is like family to us!

Dementia: Finding A Friend

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It took me a while yesterday morning to understand what was behind Maureen’s question of ‘have I got to go to school today?’  After a little probing, she told me she wanted to be with her friends so they could play chasing games together.   When we went for a walk later in the day she asked again about the whereabouts of her friend.

Maureen often says she is lonely and wants to go home to her mother and father, to a place where she had friends.  We haven’t any close friends here and visitors to our home are few and far between.  Moving back ‘home’, is no longer a sensible option as familiarity with surroundings is essential as Maureen can now get lost in our own house. Therefore, it is an opportune time to attempt to develop some friendships a little further and entice them into our abode.  I’m hoping to set the ball rolling on this front later this morning. One of the candidates on my short list has a young child and I know Maureen would love to have a youngster to play with.  I hope to have some progress to report on Monday: have a good weekend.

Dementia: Significant Disorientation

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We made it to Nottingham, but it may have been a bridge too far as Maureen is significantly disorientated this morning.

Girl Tuesday played a sterling role yesterday in persuading Maureen to get into the chauffeur driven Volvo. Tim, the man behind the wheel, remembered his script from the week before and played it well.  Maureen’s brother and sister in law were excellent hosts and put on a lovely lunch.  Unfortunately, the Birthday Girl, Maureen’s sister, was unwell and did not show.

Shortly before Tim was due to pick us up at 4 pm Maureen began to lose track of proceedings.  When I suggested that it was time to go she said she was ‘waiting for her husband to pick her up’.  There then followed a lengthy standoff before we could persuade her to get into the Volvo for the homeward journey. A significant personal attack followed as we were chauffeured home until a semblance of peace broke out on the back seat of the vehicle.

We had to take a natural break as we arrived on the outskirts of Grimsby when Maureen was feeling unwell.  Within half an hour of being back home, Maureen was fast asleep on the sofa; still wondering why we hadn’t seen the Birthday Girl.

As I try to deal with my own tiredness this morning it’s back to the drawing board: a good opportunity to reconsider whether long days away from home is in Maureen’s best interest.  She has been very quiet seemingly ill at ease in her surroundings and deep in thought.  It is interesting to read how other people with dementia, such as Dr. Richard Taylor, dealt with their condition but I need to understand how Maureen’s sees things!