Dementia: The Most Amazing Day

Posted at 6 am after an amazing sleep.

Yesterday was nothing short of amazing.

We received outstanding support from the early hours and Maureen thrived as the day progressed.

• Our early morning visitor, a nurse, gave me a bird’s eye view of the Konar Suite and paved the way for a personal inspection.
• Our Key Worker phoned at 8 am to catch up on developments
• Once the after effects of lorazepam wore off Maureen was in great voice.
• The  Home Treatment team rang by 10 am to check on Maureen’s sleep pattern.
•  As soon as ‘Girl Friday’ arrived Maureen asked her for personal care.
• My conducted tour of the Konar Suite took place before noon.
• On my return home, my well-groomed wife was singing along with Girl Friday.
• An impromptu call at Clee Medical Centre led to a GP appointment.
• The dip test suggested Maureen doesn’t have a UTI.
• Maureen’s blood pressure was excellent; lower than it had been for ages.
• Maureen had great fun playing with a four-year-old boy in the Waiting Room.
• Maureen loved shopping in Cleethorpes and seeing lots of friendly faces.
• Maureen fell asleep late afternoon and we have both slept for most of the night.

On reflection, I think it is possible that Tuesday’s visit by Occupational Therapists spooked Maureen.  She may well have been thinking ‘he is conspiring to lock me away again’ and sought comfort in delusions on Wednesday.  I realise this is all conjecture, but what else is there?

There are no experts on dementia – only considered points of view!

Dementia: The Stark Reality

The joy of Wednesday morning has been replaced with a couple of days of stark reality.  Just as I thought I’d got vascular dementia in the bag, it escaped and the stark reality of Maureen’s condition hit me straight between the eyes. My optimistic plans of Wednesday morning were a pipe dream and are long forgotten aspirations of someone who has lost the ability to recollect.

Today Maureen’s early morning mode is fear and confusion.  Earlier on she was asking who the young woman was who came the other day.  She has no recollection of why we might need a Wednesday night sitter and says she has never met the woman before, despite it being her third visit.  Yesterday morning she told me that she thought her diagnosis of dementia ‘meant she was mad’.

It was a little reassuring when Maureen’s Care Coordinator reminded me yesterday that with vascular dementia just as you think you’ve got it in the bag it changes and you have to get used to a new reality.  She also asked me if I had heard of ’emotional incontinence’ as it could be behind aspects of Maureen’s presentation, and I confessed I hadn’t.  However, there is one thing I generally have in the bag – how to distract and redirect when Maureen is upset: Bocelli is the man of the moment:

Although I recognise that his exalted position could change and I’ll have to find the next idol for a mature lady: thank goodness for YouTube!

Dementia: Transformed by Bocelli and Brightman

Maureen was really upset when she woke this morning.  She was very concerned that ‘the lady she had been looking after was cold’ and was hunting around for extra bedding.  At first, I thought she was talking about her mum but then she clarified it was ‘one of the ladies’.  It took me a while to persuade her that there was no one else here and perhaps she had been dreaming.  Then a stroke of luck via YouTube led to a positive change in her presentation.

I had heard this song for the first time earlier in the morning:

When I called it up again for Maureen she was transfixed and we spent over an hour listening to Andrea and all the beautiful ladies who accompany him.  What a medium music is at any time of the day here!

Dementia: Compassion and Fear

On Wednesday I received the sad news that a neighbour had passed away.  I delayed telling Maureen the news until the next day, as I feared it would cause a certain amount of distress.  Once again I was wrong as Maureen remembered with fondness an elderly lady across the road who had scolded her for being out by herself.  She still tells the story of an 86 year old woman with dementia, running down the road to bring her back home to me.  Later in the day, she showed great compassion to the grandson of the deceased when I invited him to our house to share our sadness over his loss.

During the afternoon Maureen was again in a compassionate mode as she tried to console me over the pain I was experiencing in my legs.  Once I shared the news that a medical opinion was needed, to seek advice over my restricted movement in both legs, her concern was palpable.  Unfortunately, she got the wrong end of the stick and it took me a while to understand how her compassion turned to fear.  It was only when she shared that perhaps she would need someone to come and stay with her that I grasped the significance of her concern.

I think Maureen believed that a stay in hospital would follow my visit to seek physiotherapy treatment this morning.  She shared that she had mistakenly been thinking that her deceased daughter would come up and stay with her in my absence.  Her thoughts are quite understandable as I will be returning to the hospital where I had both hips replaced.

Maureen is in a state of panic this morning with the prospect of my early morning visit to the hospital looming.  Her initial concerns have been about us being on time.  Now she is worried that she doesn’t know what to wear; alongside a thought: ‘if she doesn’t know how to dress they won’t let her go home’.  It’s clearly one of those occasions when I should have said nothing and gone for my hospital appointment alone!

I realise that most of the time I’m guessing how Maureen might be seeing things.  I must confess I have no idea why a publication that the Care Coordinator left for her consideration was first placed behind the sofa and then wrapped in a fleece.  My guess is because it was from the Alzheimer’s Society but I will never know.  What I do know is that Maureen is still a compassionate woman who is often frightened by her reality and attempting to minimise her distress remains my priority: not causing it – as I have clearly done at the moment!

 

Dementia: ‘It Is Worth It!’

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:

• I realise that ‘wanting to go home’ is likely to feature in Maureen’s dialogue day after day so I’m going to give this approach a go for a while:

• After 25 years together I’m trying to learn more about Maureen’s extended family – her mum was one of ten.  The search is on for photographs of Maureen’s relations and hearing her talk about her family is fascinating.
• Today’s planned expedition to Nottingham has been postponed and our chauffeur has been stood down.  Maureen is far too confused to take her away from the home base at the moment.
• I hope to make Wednesday night a fixed feast for an overnight sit as soon as professional staff and the relevant Care Agency are open for business this morning.
• I need to seek medical advice over tightness in my shoulders and legs with a return to Tai Chi imminent.
• To have a chat with Girl Monday this morning about how Maureen has been over the weekend and adjust our approach accordingly.

It is worth it to progress the above irrespective of how you view dementia.

Dementia: A Star Appears

I know it’s a little late for this analogy but a star has appeared in our sky of carer support. Girl Friday Night arrived at 10 pm she will be going home at 7 am.  Maureen and I have the sleep that you can only dream of when you are exhausted.  You move quickly in these situations and I will be seeking for our newbie to be a regular Girl Wednesday Night and  Girl Friday Night every other week -she’s up for it.

Once again I have to praise our social worker for the speed of his action in adding Girl Friday Night to our Team.  He had the newbie available as soon as he called here yesterday afternoon.  Maureen really likes our Key Worker and was keen to show him that she had been sleeping in a drawer in the bedroom for the last few nights. On his advice, we managed to get one of our by one of our GP’s to rule out infection as a cause of her confusion and distress.

Refreshed from a good night’s rest we hope to be in Freeman Street Market early doors.  We both have a new found energy in our step this morning after what feels like a life-saving rest but I know that with dementia one swallow never makes a Spring!

 

Dementia: What Could You Fix?

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: It’s A Farce

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 Wish For 2017

I have decided to post today, despite my vow not to post at weekends, with a wish for 2017:

Dementia: Going Home

I woke at one this morning after going to bed before nine.

On Remembrance Sunday I thought of my dear dad, sadly no longer with us.

Finbar’s words express far better than I could what a wonderful father he was:

As a Tail Gunner with a Lancaster crew, he flew over 40 missions.  When I thought about what ‘ops’ I would be on today my mission became clear: to travel to Coventry to hold my mum and my brother’s hand.  Mum has vascular dementia, John has Alzheimer’s.  It is possible that neither of them will recognise me.  However, I know I’ll remember them and it’s what dad would have wanted.

I’ll be setting off shortly and may post more when I arrive at my hotel in Coventry.