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Dementia: A Walk Down Memory Lane

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I took Maureen a walk down Memory Lane this morning.   Her parents came to Cleethorpes when she was still at Primary School so her father could benefit from the sea air. They only stayed for a couple of years because Jack couldn’t find suitable employment.  Fortunately, he managed to get his job back as a metal polisher at the Raleigh so they went back to Nottingham.  This meant leaving lots of family members who had joined them on the East Coast behind.

One of the reasons we moved to Cleethorpes was because we often came up here to visit Maureen’s Aunties and Uncles.  On one visit I was so taken with the place that I said ‘I could live here’: the rest is history.

The photos below follow us on this morning’s walk down Memory Lane:

 

Maureen outside her grandparents former Guest House: previously The Richmond Hotel.

Maureen with Roy the Head Gardener at Kew Road, where she lived as a child.

 

Maureen outside her Primary School.

The Airman is a reminder of my dad’s time as a Rear Gunner; it’s just across the road from the RAF Club where we spent happy times together.

I will print these photos to remind us both of a very enjoyable Father’s Day

 

 

Dementia: ‘What About Me?

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Dementia is giving Maureen an opportunity to ask ‘what about me?’  She is posing that question to me day after day.  What she is asserting is that in my hour of need she has always been there for me: totally devoted to helping me to recover from periods of being unwell.

Maureen is also asking the same questions of her family.  She says: ‘they don’t know where I am; have never been here; I can’t remember what some of them they look like’.  She is saying ‘I raised you and where are you when I need you’.

We are fortunate that we live in an area where the biomedical model for dealing with dementia has been consigned to the history books.  I witnessed first-hand the person centred model that is used here after I had summoned help from the Home Treatment team yesterday.  Amanda was walking down the road holding Maureen’s hand trying to console her.  Her colleague was talking to me at the end of our drive making the point that ‘we have to treat the person not the condition.  She is part of a team who see Maureen’s environment as key in her presentation.

Maureen gave me a wonderful hug at the end of a trying day for her: once again she was pleased that I was listening to her concerns.  Cleethorpes is a place of great sadness for her – our holiday romance at the sea side may need to be drawn to a close.  She sits on a sofa where her daughter fell into her arms and told her devastating news that her life was drawing to a close.  Her view as she thinks of Denise is through the ‘bars of her prison cell’ looking at Pat’s bungalow: a picture of sadness and loneliness.  She told me yesterday that she longs to walk down the familiar streets of Bell Green where we used to live in Coventry.

Maureen is not ‘Sundowning’ she is lonely and disappointed by the behaviour of others: including me.  She wants us close by in her hour of need: if I’m not in sight she is frightened.

Those who love Maureen can no longer afford to hide behind dementia being a progressive condition.  I am pleased that my wife has the courage to ask ‘what about me’ and she is already aware of my response.  Unfortunately, I cannot do this alone and other people need to step up to the plate and tell Maureen when they will be with her in her hour of need.

Postscript:  A brief note of thanks to all family members who sent messages of support yesterday: from the Midlands, Royal Albert Hall and North bound trains.  Things are hectic here at the moment all I can do is update you on my Blog.

 

Dementia: Spoiled For Choice For Support In Cleethorpes

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This post is being revised for publication in the morning.  I mistakenly hit the publish button while I was drafting.  Things are very challenging at the moment and I’m hoping a cup of tea calms things down!

Dementia: Creating Purpose and Routine

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It is never easy as a Care Partner to know if your approach is helping your loved one. However it doesn’t take you long to realise when you have made a mistake as there is no quarter offered by ‘Mrs Dementia’: she soon lets you have it with both barrels when you get it wrong.

I have made some progress in the last couple of days in helping Maureen find purpose in her life.  On Sunday I kidded her into going to Nottingham to support her brother and try to lift his mood.  Maureen warmed to this theme as she is a natural nurturer and I reminded her off her good works throughout yesterday whenever the opportunity arose.

Yesterday I encouraged her to follow the tradition of Monday is wash day and change our bed linen.  When I returned from a shopping expedition there was a line full of washing and Maureen had been spruced up in the shower.  Then I dropped a clanger asking if fresh linen had been put on the bed.   I soon got my come-uppance as Maureen refused to help our carer follow my hints about further tasks.  As Chloe said ‘she doesn’t like you telling us what to do’.  Later in the day I paid the price for another silly mistake.

Mike my neighbour asked if he could put his car alongside ‘Maureen’s’ on the drive.  When she awoke from her afternoon nap she was very distressed about our drive doubling as a car park for Mike’s car; particularly as it obscured the vision of her motor.  It also gave her a further opportunity to become frightened that strangers were always visiting this place.  I hastily asked Mike to remove the offending vehicle and return ours to its rightful place in the middle of our drive  As you will see from the photo, our car, Maureen’s beloved Space Star is now home alone in its rightful place in the centre of our drive.

On Friday I became so concerned about Maureen’s presentation that I arranged a check- up for her this morning.  She is sleeping a lot lately and plagued by an extremely sore mouth.  I managed to make this a joint appointemnt yeaterday so I can also discuss one or two matters of concern of my own. I know that ‘Rav’ (Dr Munjal) will pull out all the stops to see if there is anything he can do to make our lives just a little easier.

Personal reminder: Maureen has been a new woman with purpose in her life but any changes in routine can knock her for six. 

I’ve just remembered a helpful suggestion from a Mental Health Nurse during one of my periods of depression.  He said ‘never go to bed without some idea of how you are going to spend the next day’.  His advice along with support from various other people helped me to find my way out of recurring periods of anxiety and depression.

From now on I will list some possible tasks for the day at the end of each post to try to ensure that we don’t get lose our way on this challenging journey.

Today’s Tasks

  • Attend medical appointments for  health assessments.
  • Make dental appointments.
  • Sort out better arrangements for storing spare bedding.
  • Continue to de-clutter our house.
  • Print photographic reminders of how we spent yesterday.
  • Continue to potter in the garden.
  • Stick to established routines.

Great News: I’ve just had an amazing find – the missing bread knife that belonged to Maureen’s grandmother.  As I gave the bathroom a much needed early morning clean I found it safely tucked away behind the sink.  Now if only I could find the missing butter knife: also precious for the same reason.

Wow the latest search has revealed a key, sharp knife, Maureen’s distance glasses and bus pass all safely stashed away in the pocket of her fleece hidden from view in a wardrobe in the spare bedroom. It’s only a matter of time before I come across Maureen’s engagement ring, our address book and the remaining missing key.  They don’t call me P C 70 for nothing: I’ll make the CID at this rate!

Dementia: What A Team!

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I would not have survived yesterday without significant help from friends (including cyber) professional staff, and family members.   It is possible that I will not have space to thank them all so apologies in advance if I fail to mention you!

My day got off to a good start when I met Ed one of my friends from the Buddhist Meditation Group.  Our chat for an hour or so helped me to understand the ‘message’ a little more.  Ed is such a generous man who is always prepared to meet me at the drop of an E Mail and fields my questions in a very helpful manner.  Like all good Buddhist we ended our chat by talking football as Ed is a ‘Town’ supporter and they have just got back into the Football League.

I returned home from the calm of Buddhism to the storm of Dementia.  Maureen was incensed that Gail her carer had stopped her from walking alone.  She vented her frustration at me for several hours and I had to trail her for well over an hour.  There is little point in repeating her recriminations or accusations: they are familiar tales in the dementia bubble.

During one of the intervals in the hostilities I sought advice from Mel my Admiral Nurse but failed to reach her.  Yvonne the Occupational Therapist who had declared Maureen unfit to wander was on holiday but I had a helpful chat with one of her colleagues about the practicalities of re assessment.   I also managed to reach Sue our social worker who provided excellent telephone support and reassured me that I was on the right track (the digital tracker is currently on charge).

I hoped that tea would move things in a new direction as the vegetarian burgers ended Maureen’s hunger strike and I anticipated all was fine and dandy.  Unfortunately the food may have hit one spot but opened another door and Mrs Dementia re -entered wondering ‘when her husband would come to pick her up’.  She asked me ‘if I could give her a lift home as her kids would be wanting their tea’.  Despite my best efforts I couldn’t help her to see that she was home: during her musings she mentioned Clarice, her aunty, and that opened a door in my thinking.

At a lull in the attack I slipped away to call Clarice with a cunning plan.  Half an hour later I dropped Maureen at Clarice’s where she could wait for ‘her husband’ to pick her up.  Once home again I spoke to Colin Maureen’s son on the phone to appraise him of developments.  He was very supportive and we chatted about contingency plans for my visit to Coventry in a couple of weeks.  Colin made some very helpful suggestions about Ian (his brother) and Barrie (his uncle) potential involvement in the arrangements to see my own family.

I returned to pick up Maureen an hour after I had dropped her off.  In my break from hostilities I completely change my outfit and deliberately wore a red fleece that belonged to Maureen.  Clarice was very tolerant of her niece and husband catching up on the latest news for half an hour or so.  When we returned home as Mr and Mrs Collins I manged to keep conversation on how Clarice was coping living by herself now she was widowed.

Maureen had clearly been frightened by Clarice’s plight and shared her fears about being left alone in a strange place.  She was pleased that ‘I wasn’t angry’ about her thoughts about ‘the need to move from the sea-side and go back home’.

I have managed to stay in bed for about 7 hours and recharge the batteries a little. Maureen has woken a couple of times and reopened a number of issues.  Her initial concern was about going back home.  Then she has moved onto her concerns about short-term memory loss.  Once again she claims that ‘no-one has told her how to get her memory back’ and I have gently contradicted her assertion.  This has not gone down particularly well and I hope I haven’t overplayed my hand.

I have never mentioned  Kate Swaffer to Maureen or Dominique Klotz who advised me to check her out.  I’m so fortunate that Paul Martin my counsellor suggested that blogging might be helpful to me as a Care Partner: as it has opened the door to neuroplasticity.  Kate continues to bang the drum about potential and just as Irving Kirsch was my route out of depression Kate’s has to be the guide on this journey.

I firmly believe that Maureen has the potential to regain her independence and wander safely at will.  It is possible for her to show us that she can cross roads safely and with the tracker in place can get safe help if she feels lost.  All she needs is patience from yours truly and she will prove to others that she is safe to wander.  Once we have overcome that little matter it may well be possible to encourage her to explore other opportunities to get her memory back.

Thank goodness that Lisa will be here with her husband and two beautiful daughters by noon.  We both need a day off and with luck we might make it to the circus together.

Jen one of my cyber friends uses her blog to show gratitude and we wouldn’t cope  without such a wonderful Team who have supported us to find our way on this journey. Once again sincere apologies to anyone who I have missed out on today’s post but you know who you are!

Please note:  I am short of time and have not provided any links to Kate Swaffer or Irving Kirsch on this post: they are well worth following up on Google.

Footnote:  I just couldn’t resist that photo.  Did I ever mention that Coventry City won the FA Cup in 1987?

Further Footnote: 8.15 am the attack continues with a vengeance that I have not seen before: another type of circus.  Where are the clowns?

Dementia: Seeking To Increase Awareness

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It is rather ironic that as Dementia Awareness Week comes to an end that yesterday I found myself hurriedly trying to bring some unexpected visitors up to speed  The nature of our relationship made my intervention relatively simple as we had only met our guests earlier in the week  However, we had probably both overlooked that they were ‘on a mission’ and keen to share the benefits of their faith and leave us with the Book of Mormon.  After a while I could see that Maureen was reeling from the flow of information and sentiment so I decided to invite one of them to help me tidy up the kitchen.

It must be really hard for occasional visitors to see beyond Maureen’s Hostess Mode.  They never see her frustration and exhaustion following their visits.  It is also very difficult for me to encourage them to back off when they and she are in full flow.  What I was able to do yesterday was without fear of recrimination: something not so easily done with family members who get carried away when they are in Maureen’s company.  Perhaps the time has come to have some open conversations and share the 12 Helpful Hints from an earlier post.

I intend to take a low key approach to today and see what Maureen presents.  It will be interesting to see what she remembers from yesterday: I have purposely left the Book of Mormon around.  It’s possible that she has forgotten her behaviour at 2.30 am when she returned from the bathroom, after getting lost on the way, complaining this was an ‘a******* sort of a place with no names on the doors’.  This was an unusual turn of phrase expressing her concern about not being able to find her way around and having a ‘stranger’ in her bed.  I removed myself to the spare room to bring to an end Maureen leaving and returning to the room and switching the light on and off – presumably to see if ‘a stranger’ was still in her bed.

There are many occasions when I wish I had someone to pull me to one side and tell me where I might back off or try something a  different.  Now I wonder if it is time to top up Maureen’s tea pot: always a safe staring point on any morning.

 

12 Helpful Hints

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It is easy to lose your way when you are a Care Partner: particularly when you are tired. I’m hoping that the following hints will steer me, and others, on a sensible path as we move forward on our journey.

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Communicating with someone who has dementia

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What can someone with dementia feel?

Imagine if you were to lose the ability to say the right word or understand what was being said, eg when on holiday in a foreign country where you don’t speak the language. You may feel frustrated, angry and look for help, perhaps to someone to interpret for you. You might respond by not speaking at all and withdrawing into yourself of avoiding situations where you have to communicate with people.

Here are 12 Helpful Hints for communicating with someone living with dementia.

  1. Be calm and patient.
  2. Face the person, speak clearly and slowly.
  3. Make sure that you have their attention by gently touching their arm and saying their name.
  4. Use short, simple sentences and say exactly what you mean.
  5. Try to get one idea across at a time.
  6. Allow plenty of time for the person to take…

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Dementia: Looking Back: Looking Ahead (Week 18)

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Maureen continues to be preoccupied with the things that she is unable to remember. Once again this morning she has been saying that she doesn’t know anything about me and can’t remember us getting married. We have been talking about her memory loss for quite some time and our discussions provide food for thought.

I have suggested a number of ways that Maureen might be able to improve her memory including taking advice from those who have expertise in this field.  Although I accept that when Maureen wakes up later in the morning her agenda, if she has one, may have changed.  However, I think it is worth trying to see what happens if I suggest we try to sort out our wedding photos or watch a video of our ‘Big Day’.  The other thing I have suggested is that she tries to write things down that have faded from her memory so she has a point of reference when she can’t recall something.

Maureen had a lovely morning when her son visited yesterday: they sat in the garden chatting while I popped out to the Leisure Centre.  They were still at it almost an hour later when I returned.  Before he arrived Maureen was very nervous; saying she ‘didn’t know what she was going to talk to him about as she didn’t really know him any longer’.  Her brother and sister in law may well visit this week and that should be another opportunity for Maureen to see her family and regain her confidence in the company of other people. With luck I hope to persuade her to make Short Mat Bowls or Social Dancing in the coming week.

The warmer weather always helps and I’m optimistic we will continue to have lots of walks in the coming week.  Maureen still struggles with being left with carers while I pop out for an hour or two but having some sort of respite is essential if I’m to continue to have the energy to be a supportive Care Partner.  I’m hoping that we will manage an overnight stay in Coventry mid-June so I can catch up with several family members.  It would be lovely to see Lisa my eldest daughter on her birthday and I will do my best to make it happen. Just to be on the safe side I will arrange contingency plans in case Maureen doesn’t feel able to make the trip.  

It’s the hardest thing in the world

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Another moving post from George.

georgerook51's avatargeorge rook

New York City, New York State, USA --- Two bolts of lightning hit the antenna on top of One World Trade Center in Lower Manhattan as an electrical storm moves over New York, May 23, 2014. --- Image by © Gary Hershorn/Corbis

It comes out of nowhere.

Bang.

A jolt of lightning strikes your brain.

You’re suddenly taken where you don’t want to go.

A place you’ve been avoiding, blanking, hiding, camouflaging.

It’s emotional chaos for that little flash of the future.

So, that’s what is going to happen after all.

Dementia is a slow burn. Not for everyone I know, but mostly it takes years, even decades, to develop, or rather for

Your brain to stop working.

You live on, after diagnosis, mostly forgetting about it. You get on with your life.

Yes, you find it hard to get words sometimes, or to remember where and why you’re going somewhere.

You can’t always decipher what you hear first time…irritating those you live with.

You might start to shuffle a little, become unsteady on your feet, find steps a little tricky.

But it becomes the new norm.

Then out of nowhere…

“It’d…

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Dementia: Looking Back: Looking Ahead (Week 17)

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Regular readers of this Blog will note a different picture to start the week.  This is because this morning I want to focus on moving ahead by looking at the opportunities that our experiences from last week present:

Travel: Maureen really enjoyed our day trip to Coventry and that provides inspiration to travel a little more.

Walking: We have had several enjoyable strolls this week in beautiful sunshine.  Maureen has sought to teach me the ‘Green Cross Code’ during our walks which raises interesting questions about her capacity to be safe when out alone.

Socialising: On Saturday and Sunday Maureen came into her own showing a great deal of compassion to strangers in need.  Her attempts to communicate with a woman who had suffered brain damage and offer comfort to a lonely elderly widow was heartening.  We also bumped into some friends from our Bowling Club and Maureen enjoyed some friendly banter.  It would be interesting if we could pop into to see some of our friends from bowling or dancing in the coming week.

Visitors: With the warmer weather upon us the beach beckons when we have visitors around particularly for families with young children. I’m sure Maureen will find it easier to cope with larger groups of people in the great outdoors.

‘Strangers In The Night’:  After another disturbed night I am still thinking of the best way for us both to get the rest we need. When we sleep together it is easier to ease Maureen’s fears about strange men in the room but when I am banished to the spare room that becomes rather difficult.  I turned from ‘Zero’ to ‘Hero’ in the space of 4 hours: reprimanded when going to bed for being tired with ‘how would I cope if I had to work?’:  needed at 2am to keep her safe from ‘visitors’.  I’m needed again as I type as Maureen is in floods of tears about how she misses her family in Nottingham and what a good dad she had.  I’m off to be ‘Tea Boy’ before I finish this post.

Tea provided Maureen with temporary relief from upset but now she is worrying about her poor memory.  She is concerned that she isn’t really sure who I am half the time – I hope my reassurance and a further cup of tea might help her to rest a little longer.  I’m glad Chloe, today’s carer, will be here in a couple of hours as another pair of hands will make things a little easier and one of her ‘Pamper Days’ might just help.

Meditation: I need integrate meditation into my daily routine and hold off on attending Wednesday evening classes as two carer sits in one day fuel the ‘desertion syndrome’.  With luck I will be with  on YouTube as soon as the coast is clear.

Too busy for Prescribed Disengagement   here!