Category Archives: General

Dementia: What About Me (2)?

General

This is the second time today I have reblogged a post, and this time it is from just over a week ago.  It is reassuring that I have a joint meeting with my Admiral Nurse and our social worker on Monday morning.  This will be an opportunity to move forward on the issues I outlined below:

Dementia: What About Me?

Oct21

It’s early in the morning once again.  I have woken myself up this time, no-one else is to blame.  Maureen is sleeping peacefully, thank goodness, and my mind is active far too early in the morning.  With a meeting with my Admiral Nurse  this morning and my social worker tomorrow I am trying to clarify my thinking about my aspirations.  Put quite simply it is that I want to be more than a Care Partner.

There are some people who almost brag about their total devotion to their loved one.  Any perusal of Talking Point will reveal harrowing tales of endless struggle, and acceptance of an impossible burden.  Often the marriage contract is used to justify heroic struggle, even when the odds are stacked heavily against the Care Partner.  I do not believe Maureen would expect that of me or me of her.

There are lines in the sand in our relationship, and our love is not based on evidence of self scarifice.  In fact I have often heard Maureen hint, and even say: ‘if this is becoming too much for you, put me in a Care Home’.  That is a measure of Maureen’s love: she would endure facing her worste nightmare rather than feel she was spoiling my life.

I have already outlined my thinking on being more than a Care Partner in The Way Ahead.

Once I have crossed the bridge of a Carers’ Assessment I will be a better Care Partner for Maureen. Quite simply, because I will become myself again.  It’s such a shame that this process has been postponed so many times.

Dementia: Mission Impossible (2)

General
Maureen has been extremely tired, and very confused, following the social worker’s visit on Monday. This is not surprising when you consider the effort it must have taken to convey her side of the story. Throughout the visit Maureen stressed she was fine.   In her words recovery from stroke is going well, and she ‘lost her memory once’.  You can’t blame her for doing this when she is plaugued by fears of being locked away.  She has also recently experienced a dreadful introduction to Day Care that frightened the living daylights out of her.

So as skilled as Sue is, her observations will only give her a partial appreciation  of Maureen’s current presentation.  The only way she would gain a real insight into Mauren’s capacity is to be here 24/7.  Therefore, I have reblogged a post from six weeks ago to help fill in the gaps a little.   Sue might also consider having  a chat with Chloe and Gale, our paid carers, to hear their perspective on how Maureen really is.  

So it’s Mission Impossible once again just as I posted a few weeks ago:

Dementia: Mission Impossible?

Sep18

I am beginning to wonder if social services are on ‘Mission Impossible’ trying to deal with dementia.  Members of staff are expected to make an assessment of Maureen’s condition by occasional visits for short periods of time.  They then make decisions about thFeatured imagee amount, and type, of care needed. The photograph of the hole in my neighbour’s garage will help me to illustrate the point I am trying to make.

Our social worker chatted to Maureen for a couple of hours on Wednesday morning.   Maureen seemed in good form and relatively lucid for the duration of her visit.  The social worker concluded that Maureen has capacity to determine her care needs when I plan to be out-of-town visiting family.   She accepted  Maureen’s assertion that she is safe to be left to her own devices for considerable periods of time.

Myself and Maureen’s main carer disagree with the social worker’s opinion.  We have seen how easily Maureen’s presentation fluctuates and confusion, and distress, become dominant in her presentation.  This is where the picture on the right comes in.

A short time after the social worker had gone Maureen became very concerned that next door’s builder would soon be knocking holes in our house .  She went out to talk to him to share her concerns.  Fortunately, he was aware Maureen’s dementia and he handled her concerns sensitively.  His father had  dementia some years ago and he is well versed in the confusion that is prevalent at any time of the day.

The social worker hasn’t got a chance to make an informed judgement by chatting to Maureen on the sofa.  I’m sure she knows that presentation varies but she has never seen Maureen when she is ‘acting out of character’.  The list below gives a few examples of familiar incidents from Maureen in action:

  • Not knowing who familiar faces are: including myself and Chloe.
  • Believing she is living in a Care Home.
  • Thinking her immediate family don’t know where she is.
  • Trying to boil the kettle with the lid off.
  • Being unable to switch on the TV or use the remote control to change channels.
  • Failing to understand how to adjust the central heating.
  • Wandering away from home and leaving external doors wide open.
  • Misplacing keys to external doors.
  • Struggling to find her way home.
  • Stumbling into things, as her eye sight is so poor.
  • Thinking I have gone out when I am in another room.
  • Forgetting that the social worker has visited.
  • Having no recollection of important discussions that have taken place in the previous half hour.

The social worker is being placed in an invidious position and given an impossible task.  Maureen remains a highly intelligent woman who can still ‘talk a good game.’  She is unaware of her ‘out of character behaviour’ and the social worker has never seen her in action.

It also appears that there may be practical, and cultural,  issues within the social workers organisation.  It has not been possible to get through to her dedicated mobile for the last couple of weeks.   Her number has been unavailable.  There have also been several examples of E Mails not being acknowledged, let alone progressed . It is also possible that her workload makes it difficult to keep to deadlines or arrange meetings.

If those with dementia and their Care Partners are to remain safe, and sane, we need to call time on Mission Impossible. On Wednesday next doors builder gained a much clearer idea of how Maureen was than the social worker.  He had two distinct advantages:  he saw Maureen in action and probably more importantly; he had experienced dementia within his own family.  He knows, from bitter experience, it would be risky to rely on chatting on the sofa for a couple of hours before judging whether Maureen is safe to be left to her own devices.

Footnote: Thursday is ‘Trip Day’ by hook or by crook she’s going somewhere today!

Dementia: Gone Fishing!

General

In my plight to find a title for Wednesday I have decided on ‘Work Out Wednesday’.    Firstly, after the events of yesterday it’s going to be a day to review the week and plan ahead.  Secondly, it’s going to be a day for ‘working out’ in all sorts of ways.

Today I have to take it easy and take a low key approach to things here.  It’s time to let the dust settle and see what happens as a result of the social worker’s visit yesterday.  I have flagged up a couple of ideas to Maureen for activities today.  Her  response has been luke warm.  With luck we might make it to see her Aunty Ethel and Uncle Dennis.

The other aspect of ‘work out’ is on the mind and body.  Time to return to a bit of meditation and tai chi.  I think it is sensible to be home based today – using the resources we have here.  I may well put the DVD and the CD on in front of  Maureen to see if she will join in.  If she takes the bait it may be possible to cajole her to join in with others at some later date.  It’s a bit like fishing being a Care Partner.  You throw out the ground bait to see if you can get the fish into the swim.   Once there is interest cast out your line and try to reel them in.  The real struggle is getting your catch to stay in the keep net.

By the way I found the missing premium bond prize yesterday.  I’m still trying to find those spectacles!

Dementia: ‘They’re Coming To Take Me Away’

General,

Sue our new social worker visited yesterday for the first time and was with us for an hour and a half.  Initially Maureen was very nervous with yet another professional in the house, on a mission to prove: ‘she is mad and not the full shilling’. That was not surprising as her last experience of someone calling at the house eded up in being ‘dumped at a mental home’. So when I reflect Maureen’s agenda was to convince Sue that she hadn’t reached the stage where she needed to be locked away; a constant fear.  Therefore it wasn’t surprising that Maureen took every opportunity to demonstrate that her intellect was still intact.  Early on she was at pains to recall when her birthday was, and that she could recite from July until February without pausing.

What is puzzling me is what profile social services already hold on us?  I would expect that there has been a handover of our case, and Sue should be ready to roll.  I am sorely tempted to ask for a disclosure of our records to establish what social services are working on.  I just wonder how they see us as a couple?  I recall Maureen being grilled on a previous occasion to try to find if her fear of men came from my behaviour?  It is so tiring for her to tell her story time and time again, and it is not surprising that she was exhausted following Sue’s visit.

I think the time has come for me to present a profile of Maureen from my perspective; as things have moved on since the proforma I used in April.  This document can only help discussions about my Carer’s Assessment and a review of Maureen’s Care Plan.

It was not surprising that Maureen slept for most of the day following Sue’s visit.  Performing to try to retain your liberty must be exhausting when you have suffered stroke and have dementia.

I had  real problems perusading Maureen to move from the sofa where she spent most of the evening. Once upstairs the old fears, and anxieties, surfaced at a time when I was on my knees.  It took all I had left to keep my cool and settle her, being extremely careful to avoid any form of physical contact as I she didn’t know who I was.  When I told her I was Paul she said: ‘You have the same name as my husband. There are a lot of people with that name around here.’

When I put in YouTube the other day Maureen was in fits of laughter at this rave from the grave: They’re coming to take me away, hah hah.  Obviously not really a laughing matter for Maureen as that is just what happened before. That incident makes life really difficult for Sue.  How can Maureen be expected to trust any professional after that little episode?

What is evident this morning is that Maureen is far from the charming person she presented to Sue.  She is aggressive even hostile towards me as she searches for her dressing gown.   She wants to know iif I have lent it to someone else in this Care Home?’  Perhaps, once again, I am ‘the ponce’ , as she put it, who conspired with Tracey to get her locked away.

Dementia: Missing Gear and Absent Relatives

General

When Maureen and I first got together I used to hide all over the house and she would try to find me.  Now she is getting her own back in all sorts of ways.  I am certain there is a conspiracy going on here to keep me on my toes.  On most days some of Maureen’s gear goes missing, and things come to a halt until they are found.  I am not sure if this is all part of a ‘cunning plan’ to help me to become more patient but generally when we are planning to go out we are delayed until one thing or another turns up.

I have now gathered that there are some familiar places where certain things end up.  Maureen has never put them there because her mantra remains: ‘everything has its place and everything in its place’.  So the explanations about her things appearing in the strangest places continue to confound me.  Sometimes it’s the one legged lady who nicks her shoes or the common thief who has stolen her toothbrush.  Standard advice is to go along with the explanations and never challenge their validity.  I have learned that this is the only way to achieve  anything that resembles a quiet life.

Searching will begin in earnest this morning for three relatively important missing items.  Maureen’s reading, and distance glasses, have been missing for a week.  Someone has also stolen, or stashed away, her winnings on the Premium Bonds – fortunately only £25, or unfortunately.  Best get my thinking cap on and get searching as soon as possible..

From Maureen’s perspecive people are also missing: particularly close family.  Maureen feels that: ‘they never come to see her’.  She often rationalises this thought with: ‘they don’t know where I am’.  The fact of the matter is that they do know where she is, and we know where they are.   Maureen believes that we have no contact details for each other.

In fact Maureen has forgotten that her eldest son was here eight days ago.  What she may be suggesting is that from her perspective she doesn’t see them often enough.  They all live considerable distances from us and have busy lives of there own.

Maureen never complains about the behaviour of family members; accepting that children move on when they get married.  She finds phone conversations difficult and is often reluctant to take their calls.  When they visit she resorts to the ‘hostess mode’ and puts on a show to convince them she is fine: as all mothers do at one time or another. This means that they may have little idea how her condition is progressing.   When she she puts on a show, and confabulates, her cover up is convincing.  That means they have no idea how time may be running out on them to be with the mother that has nurtured them so lovingly.  I hope that my approach to being a Care Partner gives us all  time to appreciate what a beautiful person Maureen still is – even with dementia changing her in all sorts of ways.

Dementia: One A Day and ‘Use It or Lose It’

General

Yesterday I posted that I would try to create more routine into our lives.  To carry on with that theme: today is ‘soup day’ to fit in with the Scaffold’s song.  There is one other thing I am going to introduce that is to have one particular activity to get up for in the morning.

I recall during periods of depression being haunted with not knowing how to fill my day.  It’s quite frightening when you don’t know how to fill your time and the whole day is before you.  As Maureen’s dementia progesses she has lost track of how to fill time, because she has forgotten her daily routines.  I made a start on this yesterday  and Maureen seemed pleased that we would try to visit her Aunty Ethel.  Unfortunately it didn’t happen and by the afternoon Maureen had no recollection of our plans.  We will visit Ethel some other time and she will regale us with all sorts of stories about Maureen’s childhood.

Today we are hoping to make a trip to Grimsby.  That will give us an opportunity to get one or two things that we need.  I am hoping that we will be successful in making more progress on the underwear front.  Maureen is getting really distressed yet again that most of her underwear is uncomfortable.  It will also give us a chance to move on an early morning exchange

As we were chatting in bed  this morning, Maureen mentioned that we had not found a radiogram.  I will need to look back but I think it is a couple of weeks ago that we were talking about possibly buying a radiogram.  In the time that has passed since the idea first surfaced I don’t think it has come up again.  So all this ,as are other aspects of Maureen’s presentation, is fascinating to me.  I try to be optimisic about the potential for Maureen to improve her short-term memory, and I find this morning’s conversation confirmation that we may be on a helpful route on our journey with dementia.

There is no doubt that stroke has had a massive impact on Maureen’s cognitive, and functional capacity.  When she is good she is very, very, good but when she is bad she is awful.  Her energy levels are clearly a significant factor as it takes so much more out of her to process, and tiredness soon sets in.  When we overdo it she can sleep for England, and often her greatest confusion surfaces shortly after waking.

I often don’t know how to play the ‘dementia game’.  From what I can see there are no rules, only guidelines to help you get by.  My instinct suggests if I don’t nudge towards exploring the radiogram it will be forgotten; buried in the routine of the day.  I don’t think I can risk that happening as the potential for cognitive stimulation in searching for a radiogram is significant.

The general advice for the brain is: ‘use it or lose it’ and searching for a radiogram takes us along that path.

Dementia: ‘2 day’s Monday’

General

I think the time has arrived to have a fairly fixed weekly routine.  Carers are now needed on most days to help me to keep Maureen stimulated and safe.  I also need to build in regular activities that I go to when carers are here.  In addition Maureen and I need to have a couple of fixed feasts in the week.  I am hoping that regular routines will be of mutual benefit.  Which day of the week it is won’t matter it will all come down to whether it is: ‘Wash Day Monday’ or ‘Fish and Chips Friday’.

I’m hoping it won’t take long to have a name for each day.  Then I can put up all sorts of clues to remind Maureen which day it is.  We want to avoid haddock in the washing machine on Monday’s at all costs.  As the song says:  ‘2 day’s Monday’ and the first lot of the day is about to spin.

Decadence seems to have set in on these cool Autumn mornings as we have taken to listening to YouTube in Bed.  I don’t know what Oliver Sacks would have said about that!

Dementia: Four Knives and A Fork

General

As I donned my chef’s outfit yesterday to prepare Sunday Lunch Maureen asked how she could help?  I suggested she could lay the table.  She moved into the dining room and began setting out the table.  When I caught up with what she had been doing I noticed she had put ou four knives and a fork.  There were no place settings with cutlery and table mats randomly scattered around.

Maureen  then offered to help with the preparation of vegetables.  She coped well with chopping peeled carrots but struggled with the cauliflower.   In the end she asked me to take over.  My sous chef is finding it increasingly difficult to make a helpful contribution in the kitchen.

If I supervise Maureen closely  things are done in a safe and helpful manner.  Leave her to her own devices and danger lurks, with attempts to boil the kettle with the lid off alongside other random behavior.  When she helps with washing up; dirty pots are often on the draining board alongside those that have been cleaned.

When we sat down to eat Maureen decided that it was too warm in the dining room.  She drew the blinds and then couldn’t work out how to open the patio doors. Then she decided her knife was sticky.  She returned from the kitchen with three and asked me if I had one.  I was already eating with all equipment at hand.  She then decided that her fork was sticky and went to replace it.  She had  laid the table with the ‘sticky cutlery

Maureen said she wasn’t really hungry, as we had recently had lunch.  All she had eaten earlier was breakfast.  When we moved to the lounge to eat sweet she spilled food on her T Shirt.   She  went to wipe it off and returned without her sweet. It took her some time, and my help, to find  where she had left it in the kitchen.

After dinner we watched TV for a while and I suggested it was time for a siesta.  I was relieved when she took up my suggestion as we had walked a fair distance before lunch.  After half an hour Maureen woke up and decided it was time for bed.  I didn’t tell her it wasn’t even 7 ‘o’ clock as she was obviously tired.  ‘Half asleep’ as she puts it,  she struggled to get ready for bed, even with my assistance.

The events of the afternoon led me to regret not progressing an additional carer sit over the weekend.  Just another body in the house helps me to cope more easily with Maureen.    My extremely capable wife is no more, and another pair of hands is so welcome.  I think the time is approaching to have carers on hand most days: so that I have the energy to keep Maureen fed, watered and safe.

Just to be on the safe side I initially decided to sleep in the spare room last night.  Maureen has  closed our bedroom door.  She seems to do this when she isn’t quite sure who I am.  I didn’t to risk a repetition of the other night with more of those deafening screams .

Once in the spare bedroom I heard her moving about next door.  Thinking she might become confused, and anxious, I entered the marital bedroom.  As I slipped into bed she let out a loud scream.  I reassured her it was me and she said ‘I had frightened her as she didn’t know who it was’.  Maureen apologised for screaming and we soon settled down for the night together.

When Sue our new social worker comes to get to know us on Tuesday, she will hear that Maureen’s verbal ability is intact. Maureen will confabulate to put on a good show.  She will pull out all the stops to convince the social worker that she is ‘sane and doesn’t need to be locked away’.  If Sue asks her if she reads she will confabulate that she scans the newspaper daily.  If she asks her to put on her reading glasses Maureen is unlikely be able to find them, as they have  been missing for a week.

There is a vast difference between what Maureen will spin and reality.  Maureen ‘lost her memory once’ as she frequently explains it.  Good luck Sue as you try to sort out the conflicting realities and get to know us.

Dementia: ‘Sorry I’ve Been Dumped On You’

General

Maureen woke up very early this morning as she felt cold in bed.  I immediately went into action with additional bedding and clothing.  As she settled down in bed again she said: ‘Sorry I’ve been dumped on you’.  I always try to counter such angst with phrases that communicate we are in this together, until death do us part.  On occasions I try to remind Maureen of all the times she has come to my rescue. Unfortunately, she has no recollection how her interventions have kept me alive in body and spirit on many occasions.

I have no idea what it is like to have dementia.  All I know is what it is like for me to be a Care Partner. Having dementia must be your worst nightmare.  To feel that you are a burden to your husband must put such a horror show off the ratings.

Maureen is singing in bed now I can’t quite pick up the tune.  Not sure who to call up on YouTube to cheer her up.   Best let her choose the music for once. Dementia has robbed her of so much – surely I can leave her to pick her own tunes to sing in bed.

It seems as if it might be another ‘duvet day’ as all clothing is uncomfortable or too tight.  Maureen is totally exhausted by trying on one thing after another.  I am hoping that further sleep will give her a break from her toils.  It may be a day where even more TLC is needed and we won’t venture far.

Dementia: ‘Can I Have Two Minutes On Neuroplasticity?’

General

When I popped in to see Yvonna yesterday she told me that she was busy and stayed behind the counter.  I edged her into the consulting room with: ‘I could just do with a couple of minutes on neuroplasticity’.  Yvonna is always generous with her support to me, as I seek mentoring on my approach to being a Care Partner.

Yvonna has a very holistic approach to well-being; she is well read and has a sharp mind.  The Branch of Lloyds where she is the Pharmacist is within walking distance of  our home. Walk-in expertise on the doorstep: what more can you ask for when you are trying to find your way with dementia?

I wanted to run by Yvonna how music is making such a difference to our lives.   When we have chatted about this before she commented: ‘you have found your way’.  What I wanted to share with Yvonna was that Maureen was learning to  sing along to new songs.  Yvonna is a great one for bringing you down to earth:  with a smile on her face  she suggested that ‘I would need to be working with a group of 50 people for 5 years before there was real evidence that my theory had substance’.

I squeezed more than two minutes with Yvonna and left with further cause for thought.  Music has allowed us to find our way: we sing, dance and have fun with YouTube several times in the day.  What I wonder is if I put Barney on again whether Maureen can learn, and retain, far more than the chorus?  What I do know is how sorry she feels for the lad singing:  ‘I wish I had someone to love me’

I don’t think it will be long before I am back, for another ‘two minutes’ ,to let Yvonna know how things are going.  It is such a bonus to have such expertise, and radical thinking, on the door-step.