Category Archives: General

Dementia: ‘Life Begins At 70’

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Well I’ve made it: today I enter my 8th decade.  There’s no party or Cruise to celebrate my 70th birthday. Celebrations have already begun with Maureen singing ‘Happy Birthday’ around 5 am. Her card has been on display for over a week, as we couldn’t find Valentine’s Day Cards amongst our keepsakes.  I have always said ‘her that her presence is my present’, and today is no different.

We are going to have special food today: home-made soups.  As the in-house chef, and Birthday Boy, something special will be on the menu today: with a new version of Golden Vegetable Soup for lunch, and Birthday Dhal for the evening meal.  So it’s going to be a ‘Souper Birthday’,

I remember one of my bosses saying to me that it was all down-hill after 40.  Fortunately, I have never followed his jaundiced approach to becoming middle-aged.  My current focus on life has been sharpened by Maureen’s condition.  What I have to grasp is how to enter her ‘Dementia World’.  Once I am comfortable in her world, I’m sure we will continue to enjoy our lives together: despite my advancing years.  One thing I can be sure of is I would never have caught Des Walker, and I will never catch up Maureen.  That young lady of mine isn’t that far off entering her 9th decade!

There could only ever be one song for today:

I hope all readers of this Blog have someone they can sing it to.

Dementai: Use Shank’s Pony

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Being a Care Partner for someone with dementia is a steep learning curve.  Dementia is an unrelenting teacher – get it wrong and  it’s unlikely you will get off with lines or detention.  I got it wrong yesterday, and paid the price.

My first mistake was to travel on Sunday.  On the way down to London Network Rail apologised that overnight work was causing us to run late.  Things were even worse on my return journey as no trains were going to Doncaster from Kings Cross because of problems with overhead cables.  Nipping across to St Pancrass added a couple of hours to my journey but at least I got home by eleven.

As soon as I walked in I sensed that little had changed since my departure.  Mrs Dementia looked sternly at me, and launched into a verbal tirade as soon as Sue had clocked off. There’s  little point in listing the accusations or her command of Anglo Saxon. Unfortunately, I couldn’t take her back to ‘where she lived’ as we were already there.

With the battle showing no sign of cooling down I summoned assistance from Rapid Response.  A little like a visit to the dentist the pain had eased when they arrived following trailing Maureen on a walk .  Fortunately, the stars were out at one in the morning, and the pavements were safe to walk on.

Later this morning and Mrs Dementia is in full flow once again.  Maureen is time travelling and confusing me with her ex-husband.  She is now repeating to  me,all those things she must have said to him at the dreadful time in her life.

Thankfully, Chloe our carer is here now.  We have just had a good chat about how rapidly Maureen’s condition is progressing.  We are so fortunate with the quality of our carers, and as always Chloe has helped me to put matters into perspective.

It’s a lovely sunny morning today in Cleethorpes.  I’m off shortly on ‘Shank’s Pony’: even with my hips it has to be a more reliable form of transport than British Rail!

 

Dementia: Looking Back: Looking Ahead (Week 7): A Simple Plan

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On Wednesday I posted my concern about an unfortunate carer sit on that morning.  ‘Madam X’ was so bad that we told a ‘porkie’ about an appointment with the G P to give her an ‘early bath’.  Her presence was damaging to Maureen causing considerable distress.  I have set a Simple Plan that would avoid such damage in the future.  We all know that ‘Prevention Is Better Than Cure’:

  • All carers need to have had relevant dementia training such as the Level 2 Certificate in the Principles of Dementia Care.  I have completed this free Distance Learning Course with Grimsby Institute.
  • Continuity of carers is essential
  • Our Care Agency need inform us of any changes to their rotas
  • Carers need to familiarise themselves with our Support Plan before they arrive at our door

This is a very Simple Plan that needs to be adhered to in the future.  Maureen needs continuity, with carers who understand dementia, and are familiar with the way she wants to live her life.

Postscript:  I’m exhausted after a marathon return journey from London yesterday.   That was nothing compared to nightmare that followed my return.  I had to call out Rapid Response to help me settle Maureen after my trip.  She continues to be very distressed this morning, and I have to be at my best when all I want to do is sleep.  As the BBC used to say ‘normal service will be resumed as soon as possible’

Dementia: Good Timing?

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A change of plan a post today after all:

When dementia first came into our family my response mirrors what has happened to Maureen and I.  I recall my brother acting rather strangely after my dad died. At that time I had no idea he had dementia. When mum was first diagnosed I made some awful gaffs, and may well have snubbed those who were on the spot day after day.  I try to remember my faltering attempts to come to terms with the condition, as some family members are nowtreading a similar path.   Yes I still get frustrated; even angry with their lack of understanding.  However, I then take a breath and remember that the only way to have any hope of understanding dementia is to have it staring you in the face; day after day.

One of the things I did when mum and John’s condition progressed was to enrol on a Distance Learning Course with Grimsby Institute.  The great thing about this course was that a seasoned professional commented on my answers.  Therefore, I had an ongoing dialogue as I tried to figure out how to be with mum and John.  My motivation to study was heightened by suspicions that Maureen was going the same way.  Only a couple of other family members had any sympathy with my view; others thought my suggestions were way off the mark: unfortunately they were wrong.

I have continued to attempt to grasp what it means to be a Care Partner to someone with dementia by: reading, through Forums, and exchanging with others in the same boat.  Even so when it came to telling Maureen that I would be going to London today I sought guidance from two of my mentors.

On Friday I talked it over with Chloe, our carer; yesterday with Kate our next door neighbour.  Both have extensive experience of the condition: Chloe professionally; Kate through caring for both her mother and father.  They both agreed that Saturday evening was the time to share the information with Maureen: they may well have been right.

I gave Maureen the news about my trip around 9 pm.  For about an hour she was very hostile, and angry.  Divorce was put forward as the solution if we weren’t a team any longer.  Maureen played every card in her hand as she struggled to deal with my wish to go it alone.  At times it was very unpleasant, and I realised she was probably talking to the previous incumbent rather than me: hence the suspicion, and doubting my motives.  I reeled from the attack for a while taking verbal blow after blow on the chin.   Eventually  I mentioned my concerns about my youngest daughter beeing unwell, and refusing any contact. I told Maureen that I wanted to talk to Anna about Esme.  This seemed to ally her concerns somewhat but pushed her into a guilt trip about me leaving my own family for her.

Something like an hour and a half after I had broken the news, things moved in a positive direction.  Maureen emerged from the kitchen in a different mode, and we went to bed.

At 2.30 this morning she sang lullabies for quite some time.  She told me something I already knew from the songs: she was singing to her dad.  After several renditions she asked me what time I had to be at the hospital this morning.  She thought today was my day for a scan on my shoulder.

A couple of hours later she was in floods of tears.  She was frightened that she was going to be by herself for the day.  My reassurance that she will have Sue with her all day  eased her concerns but she still felt desperate. Many of the old chestnuts  surfaced about money or ‘losing her marbles’.  I have never seen her so upset in my life.  I’m hoping that TLC and tea will help her get back to sleep.  It is tempting to call off my trip but that would only delay developing a life of my own alongside being a Care Partner.

 

It seems likely that we got it right over the timing of the news that I’m on an away day this morning.   Perhaps, I could have played it better last night, and pointed out that a carer would be with Maureen during my absence.  My hunch was that would have led to recriminations about ‘independence and being baby sat’.  There seemed little point in giving lots of notice, as that would have added to Maureen’s distress. If I had told her earlier it is likely she would have forgotten, and I would have had to go through it all again.

Maureen’s initial response to my trip was suspicion; that was to be expected: men can’t really be trusted in her experience.   After all even I’m not a good role model on that front, as Anna often reminds me ‘you left us, and ran off to be with Maureen’.

 

Dementia: ‘The’ve Worked Their Socks Off’

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My train to London leaves just after 9.30 tomorrow morning and I won’t be back in Cleethorpes until 9pm in the evening.  A number of people have ‘worked their socks off’ to make it possible for me to spend the day with Anna, one of my daughters.  I want to use this post to acknowledge the tremendous effort that has gone into supporting my away day.

First of all my heartfelt thanks have to go out to Sue, who will sit alongside Maureen in my absence.  I bumped into her in the Card Factory a few weeks ago and mentioned my plans.  Following a brief chat she offered to do a 12 hour shift on her day off.  Then Sue, our social worker, got clearance to fund my day off within an hour of returning from a week’s holiday.  My final thanks have to go to Jo the Deputy Manager at our Care Agency who pulled things together on Wednesday to finalise the arrangements for Sue to be on duty.

I appreciate that I am very fortunate that Anna and I will be able to celebrate her birthday in retrospect, and mine in advance.  It is reassuring that so many people have worked hard to ensure that I can begin to reconnect with my family at this challenging time in my life

Oh dear  I just pressed the wrong button and posted this today.  It should have gone out tomorrow: so no Blog on Sunday now!

Dementia: Saturday’s Sprinkle of Gratitude (Week 3)

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I’m grateful that  I was able to walk to the local shops yesterday to buy some provisions.

I am grateful that my hips have been replaced and walking is pain free.

I’m grateful for all the medical staff involved in my operations and recovery.

I’m grateful that Maureen was happy that I could leave her in the house while I went for a walk.

I’m grateful to all the people who spoke to me while I was on my walk.

I’m grateful that we have shops within walking distance of our home.

I’m grateful that Chloe our carer came yesterday, and gave us both excellent support.

I’m grateful that Mike and Kate, our next door neighbours, welcomed us so readily when we popped round yesterday.  With Kate’s birthday on Monday; mine on Tuesday, Maureen will simply have to learn to play ‘Happy Birthday’ on the piano!

I’m grateful for all the people who post on YouTube: we had a lovely evening listening to so many artists last night. Why not pop over there to listen to three of last night’s favourites?

Dementia: Yesterday Is History

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Dementai UK to the rescue: Mel my Admiral Nurse has forwarded this poem following my earlier post.  Is there no limit to the skills, and knowledge, of the staff of this organisation?

Yesterday Is History – Poem by Emily Dickinson

Yesterday is History,
‘Tis so far away –
Yesterday is Poetry –
‘Tis Philosophy –

Yesterday is mystery –
Where it is Today
While we shrewdly speculate
Flutter both away

Emily Dickinson

Dementia:Yesterday’s Gone

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Following an early morning conversation with Maureen  I’m going to shift the focus of this blog for a while.  We often reflect on ‘yesterday is history, tomorrows a mystery, all we have is today’.  I’m not sure who said it or if I have got it right but I’m going to stick with it as a mantra for a while, and see how it goes.

There is little point in recounting the ‘interesting’ day we had yesterday: ‘challenging’ might be a more appropriate adjective; even ‘exhausting’.  Yesterday has gone all we have is today, and that is where our early morning chatter came in.  Maureen is back in the land of nod now, and will have forgotten our lively banter. I haven’t, and have hopefully opened a door on trying to help Maureen find purpose (enjoyment) in her life.

Today’s thought is about seeing if I can get her to play the piano for me.  Maureen told me again this morning she used to love tinkering on the piano, and could play a version of ‘God Save The Queen’.   Her dad could play by ear you see.  She has often shared with me that she used to take that thought literally as a small child.

I prepared the ground on Maureen’s musical interest months ago.  I sounded out Kate our next door neighbour about Maureen tinkering on her piano.  She reacted positively to my enquiry, and ‘owes me one’.

A few months ago I asked Kate for support when Maureen was having a difficult day.  At the drop of a hat she came to my rescue, and accompanied me back home.  This may well have been the second time she had been in our house in 16 years.  On arrival she committed the cardinal sin and asked Maureen ‘if she remembered her?’  Things went downhill from there, with Maureen storming off.  Kate called herself a ‘silly moo’ after her gaff, and has not been round since.  So she ‘owes me one’…not really as she is an excellent mentor: her dad had a brain tumour; her mum dementia.

All you can ever do with dementia is ‘give it a go’: see if you can push the door open.  I just had Maureen in stitches about her success on the piano as her dad was not too fond of Royalty.  However, I think from what I have heard his little girl could do no wrong in his eyes: that’s another thing I would have had in common with ‘Union Jack’, as he was fondly known at the Raleigh!

There’s only one way to finish this post: 

 

I’ve just thought of a contingency plan: I could always get a cheap keyboard so Maureen could teach me how to play the National Anthem.  I can combine searching for a keyboard with looking for more records in Charity Shops this morning: another fun activity for today.

Dementia: Whatever Next?

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Maureen woke up at 1.30 am this morning and put the light on in the bedroom.  At first I thought she was looking for additional clothing because she was cold. Then she left the room and returned a few minutes later talking about her car.  She was of a mind to contact the police because it had been taken again without her permission.  Eventually, I joined her at the window to confirm that it was still on the drive.  She still thought there were people in it, and carried on venting her concerns.

The car issue continued for quite some time, until I manged to cajole Maureen back to bed. She is sleeping now, and may well have forgotten the incident when she wakes.  It’s fortunate that a meeting is scheduled with Mel, my Admiral Nurse, tomorrow.  I need to explore the best way forward on the following issues:

  • Issues relating to the car
  • The clothing shortage
  • Developing ‘me time’: having a life beyond being a Care Partner
  • Reviewing my approach to being a Care Partner
  • Appropriate courses or reading material
  • Helping Maureen to develop a purpose in life
  • Resolving difficulties with the Care Agency

Five hours later and Maureen is awake again, complaining that she is coldso  I adjusted the bedding to provide extra warmth.  The conversationturns to poetry, and classical music. We agree on a  departure from our normal evening routine tonight, and Maureen begins reciting Wordsworth.

I wonder how on earth she’s forgotten it’s almost a week since the celebration of Jimmy  Hill’s life.  I was thinking we could watch Bobby Gould,  ‘Gouldy’ as we called him at school, on YouTube tonight paying his tribute to the Great Man.  Poetry indeed, we should be belting out the Sky Blue Song.  How on earth could I expect a Forest supporter to understand  loyalty to Coventry City?

I can tell you what Maureen would say about all of this, ‘come on you Reds; you’ll never catch Des Walker’.

Addition

At 7.30 am I found Maureen standing in the bedroom crying; looking distressed and frightened.  She eventually tells me that she is worried that she hasn’t seen her mum, and wonders if she is dead.  I hold her tight for a while, and eventually ask her if she would like her first cup of tea of the day.  I feel impotent to offer anything else!   What an ongoing nightmare Maureen’s  dementia is becoming.

 

Dementia: Does The Agency Really Care?

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It’s case of after the Lord Mayor’s Show here this morning.  Yesterday I posted absolute praise of our GP and social worker.  Today I simply have to damn our Care Agency after sending a very clumsy carer this morning.  Her opening gambit was to tell to Maureen she wasn’t as confused, and anxious, as the last time she saw her.  Then it all came back to me she was the carer who told Maureen how to plug in a vacuum cleaner, and how to peg washing on the line.  Once I realised that; I had to get rid of her as soon as I could.  We packed her off after half an hour with a ‘porkie’ about needing to get to the doctors.

The worrying thing about this morning was that we hadn’t been told that Madam X was coming to sit with Maureen.  This has come on the back of sits not being arranged for Sunday when I’m off to London for the day.  Our social worker has confirmed that the Agency have had a couple of weeks notice of my trip to London.  Therefore, sits should have been in place by now.

I have registered concern with the Deputy Manager of the Agency this morning.   Maureen is so relieved I have rescued her from 3 hour with a carer who has a very puzzling approach to her role. She had already experienced a Spanish Inquistion for half an hour that has really rattled her.   She would have been in a right state if I’d left her in the clutches of Madam X for any longer.