Monthly Archives: October 2015

Dementia: It Keeps You On Your Toes

I recall when the children kept coming along in my previous marriage people would say: ‘they keep you young’.  I wasn’t always sure about that, and when we had four in tow we decided to call it a day.  With dementia I would say: ‘it keeps you on your toes’.

There are lots of reasons I need to stay wide awake at all times.  I need to keep Maureen safe and I have to keep an eye on what she is doing at all times.  If not there is a risk that she might come to harm by burning herself for example.  Then there is the chance she will forget where I am and wander off to look for me.  She is fine at going out for a walk but not so clever at finding her way back home.  Once I hear the door open, or can’t here her in the house, I have to move quickly or she is out of sight on a walkabout.

The other way Maureen keeps me on my toes is the the way in which her mood can change so quickly.  Sometimes I know what causes her ‘to go cool on me’, at others I have no idea what has lead to hostility.  Yesterday, Maureen became Mrs Angry when she heard I was going to the Leisure Centre in ‘her car’.  When I returned home a couple of hours later my loving wife was back responding positively to my positive comments about how good she looked after her hair do.  In fact she was totally preoccupied with the need  to give Chloe,our carer, a tip for her good work.

Teepa Snow says you need to hone your observational skills, become a detective, when you are supporting someone with dementia.  Such investigative skills would be helpful along with the need to stay on your toes.  Strange that as today is ‘Soccer Saturday’ as I always listen to the Sky Blues match on the radio this afternoon!

Dementia: Pot Calling the Kettle Black

Maureen was totally exhausted yesterday afternoon.  When I looked back on what had happened in the morning I think I worked out why.  Maureen was still in bed when Chloe arrived so she immedaitely joined her and sat on the beside  chatting.  This was still going on when I left to go to the Leisure Centre.

When I returned Maureen looked lovely after a morning’s pampering.  Once Chloe had gone it became clear that Maureen had been exhausted by the morning.  She had not been left to ‘come round’ in her own time.  Then I imagine she would have had breakfast to be followed by a shower and having her hair done.  The chatter and banter would have been non-stop.  No wonder there was a look of relief on her face when she signed Chloe’s timesheet and bade her farewell.  Maureen’s immediate reaction was to seek refuge on the sofa, and I left her to it while I prepared lunch.  She joined me in the kitchen after a while and laid the table in a fashion.

Maureen always enjoys our Friday luch of home cooked fish and chips. She ate well and  was allowed sweet – an old joke from both of our chidhoods.  Then she took to the sofa and slept for a considerable period of time.

In the evening ‘Paul the Pot’ took over, and in retropsect put Maureen under significant pressure.  Following a late evening walk we popped in to see some neighbours and stayed chatting for half an hour or so.  When we returned home Maureen revealed how challenging our visit had been for her.  It had confronted her with how stroke had damaged her memory, and left her very frightened.  Maureen had no recollection of being in Hayley and Abb’s house before.  Although she enjoyed their company one of her comments during our chat with them was telling: following stroke ‘she thought she was going mad but realised she had lost her memory once’.

Unfortunatley, I fell asleep on the sofa shortly after returning home. When I woke up I was ‘lashed with resentment’:  that I am always talking to other people but don’t talk to Maureen.  In retrospect Maureen was ‘letting me have it’ for subjecting her to a very challenging situation, because I wanted to socialise.  Popping in to see neighbours late at night is the last thing you need when you are recovering from stroke!

I hope I have learned my lesson from the events of yesterday.  It is important to encourage Maureen to spread her energy over the day.  This is easier to do when I am at the helm: providing I remember Maureen is recovering from stroke!  It must be so difficult for paid carers to know how to work with Maureen, as she is keen to do things,.  What we all need do to is help Maureen to pace herself and spread her energy out over the day. Something that ‘Paul the Pot’ needs to keep to the forefront of his plans both day and night!

Dementia: Pain and Discomfort

Despite our good news posted earlier, pain and discomfort are dominating our lives at the moment.  My leg, and shoulder, pain is back with a vengance. Maureen’s discomfort and distress over clothing has returned.  There is a simple solution to my difficulties but Maureen’s problems require some blue sky thinking.

It has been made abundantly clear to me that I need a bigger bum.  Following bilateral hip replacement my glutes need building up.  The solution is quite simple: to walk in water as a simple strengthening exercise.  I haven’t been doing it lately and am paying the price.  It is the same for the pain in my left shoulder: I  haven’t made the time to do the exercise my physiotherapist recommended.  There is a simple solution to get rid my pain; return to the Leisure Centre on a regular basis and resume my exercise routines.  The solution for Maureen is not so obvious.

There were times yesterday when I felt completely impotent to help with her discomfort.  None of the normal remedies worked and her distress continued.  At one time I had to beg my sobbing wife to come out of the bathroom, so I could at least give her a hug.  All her clothing seems tight at the moment, and even extending certain garments has not helped.  It’s now time to put these issues before people who know Maureen.

Chloe, Girl Friday, will be here soon and she may be able to suggest a way forward.   She has significant experience of working with those who have had stroke, followed by dementia.   I will also run the issue by our social worker, and Admiral Nurse.  Hopefully this will lead to something that could just relieve considerable distress at various times during the day.  Just to be able to get  through the day with clothes that feel comfortable, would be a real game changer for Maureen.

Footnote: Today has to be ‘Fish and Chip Friday’ – home cooked of course!

Dementia: Good News

There is no doubt that there continues to be a very positive response to the concerns I have raised about shortcomings in the support we have received from social services. To be quite honest I could not have asked for any more.  The outstanding issues have been referred to a Senior Practitioner and our new social worker is a breath of fresh air.  So I am optimistic that we are now on a positive footing, and am confident that things will move forward when we meet along with the Admiral Nurse on Monday.

The not so good news: I am getting up extremely early in the morning.  This is because I am accompanying Maureen to bed rather early in the evening as I am trying to avoid a repetition of the screaming  episodes when I join her in bed and she doesn’t know who I am.  The next step is to doze, along with Maureen, during the day to prevent exhaustion setting in.

Dementia: What About Me (2)?

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?

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)

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?

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!

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’

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

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’

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.