Tag Archives: Dementia and Risk

Dementia: ‘Slowly Slowly Catchee Monkey?’

Maureen has always advocated: the above phrase and it is somewhat at odds with my approach to life.  Whilst she might urge a cautious approach to things I am inclined to ‘let them have it with both barrels’.  At the end of a frustrating week in terms of progressing my Carers’ Assessment I am left with a dilemma.  Maureen’s more conciliatory approach  will lead to further delays as our social worker is unavailable for ten days or so.  My inclination is to up the ante and seek an earlier resolution to my poor conditions as a Care Partner.

It is worth comparing my working conditions with those of my stumbling block: even adversary; as that is what she appears to be at the moment.  Our social worker is unavailable for most of next week, as she is on three days training. When she called in on Wednesday she told us of a week’s holiday in the Isle of Wight and another short break  on the horizon.  I am not sure of her plans for the weekend but she is unlikely to be on duty.  By the way she couldn’t see me earlier in the week as she needed to get her phone fixed.    I  had to phone yesterday to get confirmation that she couldn’t see me.  She had failed  to respond to an E mail sent on the previous day.  When I make any comparison it is obvious I have drawn the short straw here: my working conditions are appalling compared to hers.

There comes a time in any set of negotiations when you have to call ‘time out’.  As a dyed in the wool trade unionist there is no other way for me to see a Carers’ Assessment: it is a bargaining situation and I can’t even get to the negotiating table.  As I am pretty worn out at the moment; waiting is a risky option both for Maureen’s welfare and my health.  Maureen’s needs are growing and I need a Carers’ Assessment.

I will play Maureen’s game over the weekend and hope I can give her the support she needs.   It is unlikely that any family will visit and that may be a good thing.  Neither of us are really capable of putting on the hostess mode at the moment and more bodies in the house won’t help.

My tactics on Monday?    Will I threaten to abandon Maureen again as I did five weeks ago?   That would be telling and you never know who is reading this Blog.  Well my threat certainly ruffled a few feathers five weeks ago and moved them from seats in their offices.

To to put all of this into it in simple language the ‘status quo’ cannot continue.  Do you know I still haven’t found the Local or National Agreement for Care Partners.  I reckon it’s time to ring Doug our Best Man when Maureen and I married, as he’s a Full Time Official with Unite now.  Lots of potential recruits out there my old mate: paid and unpaid carers.

Dementia: Coaching for Carers: It’s Even More Madness!

It appears to me that there is a lack of any significant coaching for those who have any caring role where dementia is present.  This lack of coaching in any structured form is apparent for paid carers and those who inherit the role when the condition invades their family.

The normal period of training for paid carers is three days.  Those that we have come into contact with through our Agency mention  three days induction at the Office.  It is my understanding that such basic training concentrates primarily on health and safety matters. Then they shadow an experienced carer for a short period of time before they are let loose with their own round of calls.  I believe that are given a handout or two on how to handle clients who have dementia.

Lets just imagine the scenario during this ‘baptism of fire’.   The ‘fresher carer’ is given a list of calls without scant detail, if any, of the clients they are about to visit.  Calls can be a short as 15 minutes or as long as a couple of hours.  They arrive at the door for the first time, might be able to scan a Care Plan and then it’s all hands to the deck.  Hey all of this reminds me of my days as a Supply Teacher.  That was challenging enough but this little lot has much greater potential to go wrong and you are completely on your own.   There is one word for this if dementia is around madness.

Now moving on to dementia within the family.  It is likely that Care Partners, and possibly other family members, have seen the signs well before diagnosis. They have adapted to their loved ones brain injury and life has gone on.  Following  diagnosis they are faced with a new reality: what had hoped was age related is something far more sinister.  Depending on where they live in the U K there will be various levels of support available to prepare them for their fate.  I have had the good fortune of an Admiral Nurse: a personal coach but they are few and far between.  With only two in this County, Heather is pretty stretched and her availability could never match my need to pick up my new role before it ‘bites me in the bum’.  Yes I get frequent painful reminders that I have not played my cards right here: distress and chaos gives me instant feedback on my shortcomings.  The approach to coaching Care Partners is also madness.

In short, the coaching available for paid carers and care partners is pitiful.  Those with dementia are being sold short. How come that some of the most vulnerable members of society are being cared for by people who have had so little coaching for such a challenging role?  Now I understand why dementia is under the umbrella of Mental Health.  I wonder and who really needs to be assessed?  One of the purposes of  this Blog is to draw attention to this madness: my wife and all those with dementia deserve better than this.

Dementia: Hoping Sleep Therapy Helps

I am hoping that Maureen’s afternoon siesta will help to get things back on an even keel here.  Things went well early on this morning, then the slide began.  My complacency has not helped.  As soon as my back was turned ‘packing to go home’ took place in earnest.  You should see the stack of gear in readiness for the homeward journey.  This is the first time for weeks that Maureen has been on this racket.  There has been more evidence of abject confusion whilst I have been at the keyboard.

I thought she had done a runner a couple of hours ago.  I returned from my office and the signs were not good, as I had foolishly left the side gate invitingly open.  Then I caught sight of Maureen in next doors garden holding a pair of my joggers.  As i cajoled her back here she mentioned she had been looking for me to see if I wanted her to put my clothes in the car.

It is possible that tiredness is taking its toll.  Maureen has been up much earlier than usual this morning: on the go all the time.  I am hoping that a short rest will help her to make sense of things.  Optimistic I know because confusion about: person, place and time are the constant features of dementia.  So it’s not surprising if she is frequently confused on these three front.  However, it’s just possible that a short nap will make it easier to keep her on the straight and narrow.

I don’t know you just can’t turn your back for a minute when you are a care partner for someone with dementia.  Oh dear it’s very quiet down there and Maureen may have scarpered.  Phew that was a close one – she is getting the washing in.  A woman’s work is never done even when they have dementia.

Dementia: Preparing for A Carer’s Assessment

It is still unclear to me what any carer is entitled to In North East Lincolnshire.  We had a generous Care Plan when Maureen came out of hospital following stroke.  I believe the usual arrangements in this are are to offer a 6 week package. Within a couple of weeks we said we didn’t need the early morning, and evening calls, as Maureen has never needed personal care.  Later on we reduced things even further to the current arrangements of 3 hours on Monday, Wednesday and Friday mornings.

In the early days I heeded advice to ‘skid addle’ as soon as a carer arrived.  With take your ‘me time’ as my mantra I followed all sorts of pursuits.  Lately I have let some of my regular hobbies fall by the wayside, in response to the dynamic nature of things here.  As Maureen’s presentation has changed I have played it by ear to provide support to my wife and carers.  Things got particularly difficult a month or so ago when Chloe, one of our regulars carers, went off for a three week period on honeymoon.  Now that our ‘adopted daughter’ is back it is time to review the best way forward.

It is clear that Maureen has responded well to me being around more.  It must have been awful for her to think i couldn’t wait to get away as soon as a knock came on the door and a carer clocked in.  In retrospect I played that one badly. Panicking when Maureen has taken herself off for a stroll has also not helped.  The scars from these tactical errors remain and are evident from Maureen’s ongoing dialogue about: ‘feeling like a prisoner here’.

I would contend that after a dodgy performance in the last few months there is room for optimism on a number of fronts. Maureen’s mood at the moment is fine and we are having lots of fun together.  She enjoys, and jokingly moans about, her household duties: ‘I am not going to run a Guest house again’; is how she might put it.  Perhaps, a reference to helping her grandmother here over 60 years ago.  However, as she puts it: ‘if I don’t continue to do stuff around the house i will have nothing to do and forget how to keep the house clean and tidy’.

I am a little nervous about what lies ahead.  It must be really difficult for any social worker to assess Maureen’s presentation.  They are likely to see the ‘hostess mode’: Maureen at her best to prevent them ‘locking her away because she is mad’.   The other factor that has to be overcome is the implications of the new Care Act.  It is also possible that dwindling Local Authority resources will mean that finances are a significant factor in the support on offer.  It is not easy to establish what we are entitled to under new arrangements for supporting Care Plans.

So there is some hard thinking, and talking, to take place over the next couple of weeks.  Maureen does not need ‘baby sitting’ as she puts it: she continues to make remarkable progress following stroke.  We are hindered in all of this by dementia being placed under Mental Health rather than Brain Injury.  Therefore suggestions about Day Centres, Clubs and the like are unhelpful.  We are a married couple who remain close: we do most things together.  All that needs sorting out is the best way for me to be a little more than a caregiver.  This requires some clear thinking about best way to support Maureen; when she wants to stay at home, rather than join me on my travels or in various pursuits.

Dementia: The Happy Wanderer

It has taken me a while to let go and not keep Maureen under constant surveillance.  I suppose it has been natural to err on the side of caution when someone has had stroke leaving them with dementia and 50% peripheral vision loss.  At first i panicked when Maureen went missing the first a couple of times and heeded to call to almost ‘lock her in’.  In the last couple of weeks or so I have taken a more liberal approach to going out by herself.

I need to praise the wisdom of Yvonna my chemist confidant in helping me to adopt a revised approach to Maureen’s presentation..  Her advice to see Maureen as someone recovering from stroke; rather than focus on her shortcomings has been really helpful.  So when I find Maureen has gone on walkabouts I no longer panic and reach for the phone to report her missing.  This morning has been a classic example of my revised approach.

I returned downstairs after checking up on the latest exchanges on Talking Point to find Maureen gone. After making the house secure I fired up the car to begin my search around the local streets.  My first trawl around her usual routes was uneventful.  I eventually spotted her, within a few minutes, on her way in the direction of home.  She soon jumped in beside me and we returned home together.

Maureen waved at a passing car on our return journey to our house.  She is convinced that she is under surveillance when she is out for a stroll, with police monitoring her safety.  On this occasion she was walking in her slippers as she said they were to hand when she decide to go out.  The rest of her attire would not have been out of place for anyone walking the local streets.

Maureen loves walking and follows advice to take regular exercise.  We have a laugh about my ability to track her down. Such arrangements may not be risk averse but they appear to fit the bill at this point in time.  Like all things with this condition there is no room for complacency and the daily challenges with dementia mean that things always need to be kept under review.

Dementia: A Happy Wanderer

There are occasions when my wife goes off for a walk and I am not sure where she has gone.  My initial reaction when this first happened was panic.  I became anxious when she had been gone for some time and followed advice to call the police. Their arrival coincided with hers and caused great amusement.  A few weeks later when she had been missing for quite some time they managed to find her a few streets away on her way back home.

My anxieties about her being out on her own stem from two sources.  Dementia means that she appears to wander, rather than walk, and has no particular route in mind.  She finds her way back home by asking people to direct her to our particular Drive.  Secondly, with 50% loss of peripheral vision mistakes are possible and accidents could happen.  Yet walking is one of the things her G P has advised her to do, as part of stroke recovery, and she retains and enthusiasm to take his advice.

Although we frequently go out walking together M likes to go off on her own and sometimes tells me she is going for a stroll.  On other occasions I find her missing and  realise she has taken herself off for a stroll.  Additional safety measures we tried with CareLink proved more trouble than they were worth and M refused to use a tracking device.  So I decided to set up an informal Neighbourhood Watch Scheme and yesterday my efforts in this direction paid off.

Yesterday afternoon I sat at my P C posting on my Blog confident that M was in the garden.  When I finished my musing I found she had taken herself off for a walk.  One of my neighbours was watering her garden and had not seen M pass by.  Shortly afterwards a friendly dog walker from a couple of streets away gave me the nod: ‘hey mate I have just seen your wife…’  As I travelled in the car to pick her up another neighbour flagged me down in his car and said: ‘I’ve just been following your wife and redirected her this way’.  Sure enough a few minutes later I hailed her and she jumped in beside me.  It gets even better than that, but more on how the evening went later.

Any reader of this post might frown and say you are taking silly risks.  Maybe my luck is in at the moment: only time will tell.  Locking the doors and throwing away the key might be a safer option.  My question would be what would that do to the morale of a highly intelligent woman who has always been fiercely independent?   Dementia may be robbing my wife of many of her attributes but I am not inclined to take away any more of her independence at this moment in time: particularly with Neighbourhood Watch on call.

Dementia: Risk Taking Can Lead to Good Outcomes

I have taken a couple of risks here this morning and on both occasions the outcome has been positive.  Early on  I received a call from our Care Agency that our normal carer was not in work and they were struggling to find a replacement.  As they were unable  guarantee a familiar face, as C’s replacement, I told them we would cope by ourselves.  There would have been little point in sending someone who didn’t know the ropes here and M’s response may well have been to refuse to get out of bed for a stranger.

This meant that I had to hurriedly change my plans to meet my Admiral Nurse as I couldn’t risk leaving M alone for a couple of hours: I made do with a chat on the phone.  It also created an opportunity for us to regain control of our own house: no longer invaded by carers and me scooting off.  So the happily married couple had their house to themselves this morning and things have gone well.  It raises the question about the need for flexibility within Care Plans but I recognise the difficulties with such arrangements.

Early in the afternoon I took another risk by watching Bargain Hunt on the T V and leaving M to her own devices in the kitchen and garden.  I kept my ears finely tuned to have an idea that she was still on task.  It is likely that I ‘bobbed off’, as they say around here, for a moment or two during the one o clock news.  When I came too all was quiet and M had scarpered.

After asking a couple of neighbours if they had seen her, I jumped in the car to widen my search.  Sure enough I soon came across her on a familiar route a couple of streets away.  With minimal encouragement she joined me  in the car and returned home, saying she didn’t know where I had gone.

Some would concentrate on the dangers of my risky behaviour and perhaps I have had couple of lucky break today.  However, no harm has been done and all is well without the involvement of carers or police.  Just another day in the life of caring when dementia is the elephant in the room.  Once you have had one day with dementia; you have had one day with dementia.

Dementia: Think Before Responding.

When someone has dementia your mistakes are not very often held against you.  Quite simply, misdemeanors even harsh words are forgotten and life goes on.  That is if your deeds are not being stored in the emotional filing cabinet.

I think I may have misunderstood what my wife was thinking about first thing this morning.  Therefore, I almost scalded her for sharing her negative thoughts with me.  So I may pay for that one: another black mark in the book.  Missing your mum is not a crime it is perfectly normal – I miss mine.

What I should have done was listen a little more; then I may have grasped the issue.  The ‘book of dementia’ would have suggested talking about M’s mum.  Unfortunately, she had passed before we met but I have heard lots of stories of a lovely woman.  I know enough to have opened up chat about the things she used to do and say.  I missed my opportunity there.

Caring for someone with dementia is no picnic.  You continually have to think on your feet and never take you eye off the ball.  This role challenges my approach to life: the talker now needs to be come the listener.  If he doesn’t he will continue to: ‘put his foot in it every time he opens his mouth’.  How fascinating that was one of my dear old dad’s sayings.

Dementia: Clear and Present Danger

No this is not a plug for Harrison Ford – it is an attempt to consider risk in our household.  I have just found my wife trying to turn a hot plate off on the cooker.  Her efforts have resulted in all hot plates being switched on. Checking up on me is nothing new:  I frequently fail to turn the heat off after my efforts in the kitchen.  I am in such a rush to down my creations that I often leave the kitchen overheating.  So the activity is not new but her ability to make things safe has diminished and in fact she has made things worse.  This has caused me to reflect on the risks that are around with her current presentation.

There is little doubt that her functional capacity  fluctuates.  Sometimes she appears to be lucid and completely in control of her thoughts and action.  At others we are at the other end of the spectrum and she has little idea what is going on.  Last night was a prime example of her brain misfiring and confusion being predominant.

The flood earlier in the week was another example of her brain misfiring.  Water pouring over the kitchen floor and she had little idea how to stem the tide.  If I hadn’t intervened there may have been significant damage to more than her ego. So where does all this leave us?  What are the clear and present dangers?   How can we have a life with dementia and minimise risk?

There is a balance to be struck in our plans.  It is not possible to eliminate all levels of risk.  However, it is important for me to continually assess how my wife is at any particular moment in time.  Get it wrong and things will get wet, overheat or even worse.  In short, all I can do is stay by her side as much as possible prompt and mirror safe behaviour.  I think the time has arrived to discourage her from going out on her own.  It is no longer safe to leave her to her own devices for more than a few minutes.  So no more dozing or popping out to the shops for an hour or so for me.