Tag Archives: Distress

Dementia: ‘I don’t believe it’.

General,

I have chosen  YouTube footage of Victor Meldrew’s  to open this post: ‘I don’t believe it’.  Quite simply because there appears to be progress on the underwear crisis that has bugged Maureen since stroke.  Yesterday morning: no tears and an announcement that decent support and coverage was in place.  Quite unbelievable after the tears and upset that have been part of Maureen’s early morning routine for months.  I think it is worth explaining the team effort that has gone into solving this problem.

My efforts at solving the shortage of suitable underwear have been fun but unproductive.  I have been pleasantly surprised at the help I have received from female shop assistants as I have trespassed amongst the ladies undies.  My knowledge of the intimate detail of ‘unmentionables’ (as my mum used to call them) has blossomed as I have perused the hangers of most superstores.  I think it is possible that my white thatch has eased my way around those silky areas that are not normally familiar to men.  On the brink of giving up I asked Chloe, Maureen’s main carer, to intervene.  With just one mission she appears to have hit the jackpot; with just a little help from your truly.

Chloe has obviously sized Maureen well; as my efforts had never felt comfortable.  However, It is possible that I have played a key card to ease things along.  I not only washed the latest purchases before secluding them in Maureen’s undies drawer, I also used fabric conditioner to make them softer to her sensitive skin.   Another example of helpful advice from friends on Talking Point.   So teamwork may well have brought to an end the distress that became part of Maureen’s daily routine.  Only time will tell and I certainly hope I will be able to continue with my Victor Meldrew impressions.

NB: This is an early morning post as Maureen ‘camped out’ on the sofa last night.  I will explain all tomorrow.  Things are changing rapidly here and this is more than a little dip in her presentation.

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

General, ,

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: Time To Call A Halt To This Madness

General,

Featured imageThere had to be some changes in the initial plans for D Day following the arrival of a new kid on the block.  When our carer arrived for the morning sit I realised we had never met her before so I asked her to leave.  She fully understood Maureen’s need to have people that she knew around her and happily went on her way.

There had been some crossed wires with our social worker and the review of my Carer’s Assessment will now take place on Friday.

One of the outcomes of Tracey’s meeting with Maureen yesterday afternoon is pictured on the right: packing to go home .  Maureen experienced discomfort and upset following her visit.  My conclusion is that these visits may satisfy regulations but they are unhelpful as far as we are concerned.  They appear to achieve little that is of any help for either of us yet cause considerable distress.

I am unclear if the problems are structural or more about the way an individual carries out her statutory duties.  I accept the need for social workers to carry out capacity assessments on specific matters.  The social worker has to explore with Maureen the nature of the care she would prefer if I am to be away from home for a day or two.  What I struggle with is her constant need to try to encourage Maureen to move outside her comfort zone.  Encouraging Maureen to take ‘baby steps’, and that is what is needed following stroke, is my job in conjunction with carers.  We toddle forward with that focus in mind day after day: we are sensitively relentless on that front.

I am not surprised that Maureen was packing to go home in earnest last night.  I am also not surprised that she was unable to do her normal washing up stint:  the kitchen looked like a bomb site after her efforts.  I am not surprised it took her around half an hour before she was comfortable in bed and I could switch the lights off.  It is obvious what caused her to go off the rails as soon as the social worker had gone.

Well my focus is clear this morning: I have to find a way of bringing some sanity into proceedings. I have to find a way to call a halt to this madness.  Maureen has just woken in tears asking ‘Why do I have to stay here in this Care Home?   Why can’t I go home and be with my  family?’  and much more.

Wish me luck if you can: social workers don’t take too kindly to telling them they ‘don’t understand dementia’.   If they did why do they persist in talking to someone at length who only has an extremely short concentration span?  Why don’t they realise Maureen will pick a negative out of the conversation on dwell on it?   I wonder what it will take to get them to listen to care partners, rather than concentrating on their statutory duties?  Well I may be in a position to let you know very soon.  Fortunately, I have  appointments to see the Head of Casework and the Assistant Director of Strategic Planning for the Clinical Commissioning Group in my diary .

I often reflect on why I chose a Masters Degree in Continuing Education and the Management of Change for my year’s secondment at Warwick University in 1987.  Well I think I know why now!  What good fortune that the internet means that I have resumed contact with Tom Schuller my Supervisor from Warwick.   I think he is still keeping a watchful eye on his student even after almost thirty years have passed of the parting of our ways.   Even during my retirement he is   suggesting relevant reading material –  yes Tom I have skimmed the opening passages of Musicophilia by Oliver Sacks!

Dementia: It’s the Environment Stupid!

General

I made a classic error last night and caused Maureen untold distress.  The film ‘Side Effects’ was on the TV and I had missed it when it was on the cinema a couple of years ago.  At that time is was very pertinent to my voluntary role as Facilitator to the Anxiety and Depression Support Group at Clee Medical Centre.  I couldn’t believe my luck that a film I wanted to see would be available in my living room.  I had no idea that my personal interest would cause such problems later in the night and early this morning.

Maureen soon expressed her concern about the nature of Side Effects by asking: ‘Is this the best that is on?’  She persevered with her question and it became obvious that the topic of the film was causing distress.  I  looked for other options via the remote and could find little of interest; so I removed myself to the dining room to continue watching the film in there.  Maureen followed me and said: ‘I thought we were spending the evening together’.  After a short while we returned to the lounge to continue watching the film, sat next to each other on the sofa.

It took me a while, and a doze, to realise that the film was unsuitable viewing.  Maureen had already expressed concerns and now she doing something very unusual: scanning a newspaper.  As I had lost the plot during my doze I switched the T V over to ‘Match of the Day’.  When I had seen a couple of matches I called time out and suggested we went to bed.  This is when I began to pay for my stupidity.

To cut a long story short Maureen became very confused at my suggestion to retire to bed.  She returned to a familiar racket:  ‘this is not our house – I have nowhere to sleep – I sleep alone’ etc etc.  Just to be on the safe side I put myself to bed in the spare room.  I slept well until 3 am when I heard Maureen wailing in the other room.

I entered the marital bedroom with great caution; fabricating that I had just returned from a visit to the bathroom. Maureen told a haunting tale of being kidnapped and brought to a strange house by a wicked man.  She had fears that he would drug us and all sorts of evil things might happen.  Within her story were elements of  last night’s film: ‘Side Effects’.

So a short message to myself here: ‘It’s the Environment Stupid’.  Day after day, hour after hour, I need to remember that my wife has dementia.  Minimising distress is my focus – not causing it!  Television programmes, just the same as any other input, need to be dementia friendly: even watching the news here is risky!

From now on I intend to post one blog a day at around 8 am.  So this is it for today folks.

Fear effects our dreaming

General

Great post from Kate again today.

Kate Swaffer (she/her) Kaurna Country's avatar

Toby Mac #speaklife

Fear

Diagnosed with dementia

Too often brings us intense fear

Worry for our future

Our losses

Then

Loss of reason

Inability to think clearly

Leaving us immobile

Or raging

In fight or Flight

Or somewhere in between

Nightmares and worrying

Tempting us to give in

To give up

Don’t let fear cripple you

Find a way, any way

To rise above it

And to live beyond

The diagnosis of dementia

Don’t let the fear of dementia

Kill your dreaming, or

Stop you from living.

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Dementia: Lack of Confidence or Capacity?

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We had a lovely walk around Cleethorpes yesterday evening.  It is always interesting to see where it is at for the Friday night crowds in this town.  As always there were quiet spots and places where real action was taking place.  We both agreed how pleased were were far too old to join in the celebrations that the weekend was here.

As we returned to the car Maureen began to talk about her frustration about the consequences of stroke.  She was particularly concerned that she had forgotten how to deal with her personal banking.  There are many issues here for her to confront but primarily she just wanted to be able to access her cash.  After a fairly long conversation I reassured her that i would help her to learn how to deal with her personal finances again.  On our journey home she mentioned another matter that has the potential to move things on as we live our life with dementia.

Maureen had some recollection of a chat with a man who wanted to take her to Nottingham; her home town.  She talked for a while about this man and her concerns that he wanted to stay the night with her.  Then she asked: ‘was it me?’  I reassured her that it was me who had suggested going to visit family in Nottingham this coming Tuesday:  the day after her brother’s birthday.  Maureen laughed and seemed happy when she put the conversation into context.

I am just wondering how much confidence rather than capacity is at the heart of Maureen’s concerns?  It is possible that the fear of embarrassment is holding her back on many fronts; not just banking and going to see family.  I have often seen her shudder when she realises she has made a ‘boo boo’ in conversation or action.  At her age I suppose it is really difficult to accept that you feel you have made a fool of yourself.

It is now time to ‘go back to work’ to resume my role as an adult educator.  After 20 odd years  in the profession I need to get out the WD 40, blow away the cobwebs, and see if I can help Maureen regain her confidence.  Never had a better Job Description in my life!

Worrying about people with dementia

General

Kate always says it as it is. Her Blog today sums up so many of the feelings I have about my role as a primary care giver. Although I have to say I like Kate’s term of ‘care partner’ better and will use it from now on.

Kate Swaffer (she/her) Kaurna Country's avatar

Image source: www.seashell.com.au via googleimages.com Image source: http://www.seashell.com.au via googleimages.com

Worrying is normal for the person living alongside a person with dementia, and as a family care partner or support person for a few people who have died from dementia I understand too well how difficult it is not to worry. When you love someone, and they are sick or troubled, not only do you want to support and help them, you worry about them. All very normal.

What happens too often though, in the carer role of the person with dementia – paid service provider or a family/friend support person – is that the their worry can become the catalyst for taking away our life and our rights.

It is an important statement to make, and the catalyst for this blog. Too often in the caring role, paid and unpaid, we do things in the ‘persons best interests’, or to remove the danger of litigation…

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Dementia: Time For Straight Talking

General

The time for beating about the bush with Maureen’s dementia has long gone.  It is now time for some straight talking in all quarters.  First of all the mix up of diagnosis needs to be straightened out: there needs to be a consensus on mixed or vascular dementia.  Then there needs top be clarity over the deal on the table from social services.  No care partner should be expected to soldier on in the current vacuum.

I need to bite the bullet  and end the prevarication and mystique that is totally frustrating.   Social services may need to conduct their own assessment of Maureen’s capacity to satisfy their own masters.  That is there business.   If they need to go forward on a ‘best interest’ basis so be it.  However, I wonder how I figure in their plans?  What about my best interests?

My feeling is that primary care givers are left to get on with it until they call time on their deal.  That is what I am about to do.  I hope I do not have to repeat my tactic of a few weeks ago when I threatened to abandon Maureen unless social services ‘pulled there socks up’.  I won’t go into detail here to protect the guilty but my goodness me their incompetence drove me to taking extreme action.  Then they failed to impress when under just a little pressure.

So the time for straight talking, and honesty, all round has arrived.  I am quite happy to honour my marriage vows: ‘until death do us part’.  That does not mean I have to ‘forget about me’ as: a son, father, brother, grandparent  and a person in my own right.

Dementia: A Master Class

General,

Yesterday I attended a Master Class in how to respond to someone with dementia.  During the evening we called in to see Clarice to hear how Dennis was following his return from hospital to his Care Home.  I had already sought a progress report from their son, so there would be no real surprises in store.

Clarice never faltered in her support to Maureen during the half an hour or so we were in her company.  If I had been able to video her performance we would have had some excellent training material on our hands.  She maintained a compassionate response to all Maureen’s questions; even when they had been asked several times.  Never once did she show any impatience as Maureen demonstrated that she simply could not grasp developments of the last couple of days.

Just to put matters into context Dennis is now on end of life care.  He has been discharged from hospital with a terminal diagnosis.  A District Nurse will  call at his Care Home to keep him comfortable: at 97 he is worn out and his life is drawing to a close.  Despite Clarice’s gentle performance it was clear that Maureen had little idea where he was or the severity of his condition.

It is not surprising that Clarice was able to deliver a Master Class: she has cared for Dennis for 15 years.  We have popped round to see them on many occasions and seen the progression of Alzheimer’s disease first hand.  I am not sure how Clarice has coped with something akin to a marathon of caring.  I have often looked at what she has dealt with day after day and shuddered.

Clarice has been something of a mentor to me in my approach to caring for Maureen.  Like myself she spotted signs of dementia well before others accepted there were worrying signs on the memory front.  Even in what might be seen as her darkest hour her support to Maureen was first class.  She has always had a soft spot for Maureen and her love for her niece has never been in question.  The other thing she has is experience of living with dementia; being on call 24/7.   That is why she was able to deliver a Master Class in how to interact with someone with dementia – despite her own harrowing experiences of the last couple of days.

Dementia: Looking Ahead

General

Lots of people advocate ‘Going With the Flow’ when dementia is resident in your home.  I’m not particularly fond of his phrase as it is jargon that stems from political correctness.  I much prefer: ‘Fail to Plan: Plan to Fail’ and often resort to GIGO as a tool as analysis when things go wrong.  In short if my input is Garbage the response from Maureen will reflect the quality of my intervention and I will get Garbage in return.

We didn’t make it to give Clarice any support yesterday and have no idea of developments during the night.  Maureen has woken this morning wanting to ‘get away from here’.  Not an unusual theme for her on waking up: perhaps intensified by her ‘flight’ mentality.  Maureen has tended to ‘flight’ rather than ‘fight’ throughout her life.  She has often ran away or hidden bad news from the press (family members).  There is no need for the sake of this blog to give such personal detail but running away has left haunting memories that continue to surface with dementia.  There is lots of stuff that she has never dealt with and never will.

Maureen is unsure of the best way to support a woman who is close enough emotionally, and in age, to be a sister.  She is a little confused about her uncle’s condition.  On occasions she forgets that his Alzheimer’s has progressed to the stage where Clarice could no longer meet his care needs.  My understanding of his current condition is that he will need to remain in hospital or return to his Care Home to be kept comfortable.  His life is drawing to a close.

None of this is going to be easy for Maureen.  She is still grieving for the untimely passing of her daughter.  Her dementia means that she is not really sure of what is happening to Dennis and how she can help.  Her predisposition is to run away and that is driving her approach to dementia.  There is nowhere for Maureen to run any more and that is really hard for her to deal with.