Dementia: We Shall Overcome Them

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Last night caused me to wonder if I needed to make a radical change to my approach to caring for my wife.  After experiencing a vicious verbal attack I wondered if it would be easier to accept that a more conventional approach to dementia would be sensible.  I have woken early this morning pondering the best way forward and one song springs to mind: We Shall Overcome Them.

I have deliberately chosen Joan Baez version of this song because we saw her in concert over 20 years ago and she probably sang this song.  What we are going to overcome is accepting conventional wisdom in the approach to dementia. I think it is a negative approach to the condition.  From what I have seen in the last year or so the model that is generally being applied to dementia is unhelpful.  I may not be using appropriate professional jargon but my draft manifesto for caring for my wife reads something like this:

  • There is uncertainty over damage caused by stroke
  • It is possible for the brain to relearn how to function
  • Mood is a response to environment
  • A psycho social model is the best way of approaching dementia
  • The emphasis needs to be on what goes on 24/7 not attending occasional events
  • Professional staff need to concentrate on helping carers develop appropriate skills
  • Entitlement to support/ benefits needs to be clearly outlined.
  • Care Plans need to be reactive and flexible
  • Celebrating achievements needs to be the focus rather than watching decline

That will do as a draft Manifesto for the Dementia Party for now.  The date for Annual Conference has yet to be set.

You Just Have To Smile

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I decided to get my hair cut this morning and my wife came along for company.  It is a shop run by a group of young women and they are all compassionate towards M.  She found the shop a bit claustrophobic so she went out into their rear garden to sit on  a bench and take the sea air.

E cut my hair today and she asked me how things were going.  It was the first time she had seen M since stroke and she was shocked by the transformation since she had last seen her. I was in the chair for 15 minutes or so and M came in from the garden just as the finishing touches were being applied to my head.  I paid up and we left to make our way to M’s chiropody appointment.

M seemed rather quiet as we walked the short distance to the chiropodist.  On route she suddenly said: ‘tell her not to wear perfume the next time she comes to see you’.  I asked her who she meant and she said; ‘ the black haired one – she said she’s been to our house’.   This puzzled me somewhat as her description was of someone I didn’t know.  However, I took the opportunity of finding out who this figment of her imagination was.

I decided to walk back to collect our car, and call in at the hairdressers, to try to make sense of M’s comments.  Sure enough the young girl who had been keeping an eye on her in the garden had long black hair.  By the look of her she was young enough for me to have been her granddad.  The girls in the shop smiled when I told them of M’s concerns.  Funnily enough they are all aware of M’s problems with hypersensitivity to perfume.  Not that any of them even know where we live but if they were to call they would be unlikely to wear perfume.

It’s puzzling where such suspicions come from but I am hoping that if my wife has an eye out for me in the future she will consider my age.  I don’t think that I would have had a lot in common with the youngster with the long black hair.

Keeping A Sense of Humour

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When my wife is lucid she tries to catch me out over her poor memory.  She will even set little traps and then say: ‘ can’t you take a joke any more?’  It’s hard enough trying to deal with dementia but when your loved one has high intellect you are in trouble.

This morning before she came round confusion is abound: this is not our house.  She is complaining about being kept in bed and given tea, as it is all part of a plot to keep her here.  Someone has stolen her dressing gown as it is not where she left it.  Nothing is making any sense to her.

An hour later things are almost back to her being completely lucid.  She is joking about the measures she is planning tonight to catch the ‘thieves in the act’.  She often laughs at some of the things she has said to me when she has been ‘acting out of character’.  I think her favourite its claiming that: ‘I only told her we were married so I could get in bed with her’.

A sense of humour is essential when dementia  is the elephant in the room.   It is not funny to have the beast here but we do our best to laugh together whenever we can.   My wife is singing her heart out now  – ‘Singing in the Rain’ and I have no idea what has tickled her fancy and  hope she doesn’t bring on a storm.  Wow: it’s clouding over – perhaps she’s had a premonition!

Pssst She’s Got Dementia

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Yesterday morning highlighted the importance of communicating to to others that my wife has dementia.  I have stood at the side of her on many occasions when a frown has appeared on the recipient of her comments.  Sometimes they twig it – that she has dementia – at others they seem totally confused.  This can lead to embarrassment  and distress for all concerned.  Just a little person detail here may help………………….

When your memory is poor you can get all sorts of things mixed up or plainly wrong.  You may forget that people have died and ask relations about the welfare of someone who has passed long ago.  Not being sure about the time of year, let alone the day, all sorts of questions may surface that bemuse the recipient.  None of this is helpful to the person with dementia; particularly if the recipient of their enquiry has no understanding of the condition.   Following an unhelpful response to her enquiry, I have heard my wife say: ‘i’d better stop asking questions because I keep getting things wrong’.

Generally, once people know they are dealing with someone who has dementia an immediate attitude change takes place and they do their best to be supportive.  The problem is how do they find out apart from guesswork and sometimes they might not twig it.  Yesterday I managed to steal a private word and let the assistant in the Supermarket know the score. Immediately, an transformation took place and an enabler was on the scene supporting my wife to find the garments that she needed.  Before I got my message across the same busy shop assistant was merely pointing my wife in the right direction.

I am not sure if the Supermarket concerned has engaged their staff in Dementia Friends Training or we just had a lucky break. That is one issue: the other is how do I communicate my wife’s dwindling capacity, without causing further distress, when she remains in denial about her condition.  Perhaps a bit of sign language would be helpful as you can’t always have a word on the Q T.

Dementia: ‘I Hate It’

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This is not the post I had in mind earlier today, it is far more important.  The events of last night are now of far less significance after this morning.  Towards the end of our a shopping expedition my wife said: ‘I hate it’.  She was referring to her experiences in a local Supermarket, where she had been dependent on an assistant for the last half an hour or so.

M has always been fiercely independent and capable: the stroke has robbed her of so much capacity.  No longer can she wander the aisles of the Supermarket at will; her restricted vision alone make that problematic.  When you add in her dementia the difficulties are almost insurmountable.  So as she sat in the changing rooms partially clad a kind shop assistant ferried garments back and forth.  It is uncertain if we have come away with anything that will be suitable but we have left with a feeling of disillusionment.  I did my best to say something appropriate but could have added: ‘I hate it too’.

I hate watching my wife slowly disappear before my own eyes.  She is now a shadow of the woman that left many in awe with her intellect and looks.  Beauty is in the eye of the beholder and she still looks good to me.  However, she is often incapable of rational thought and applying logic to situations.  We have both aged since meeting over 25 years ago but what I hate is seeing my wife a shadow of her former self: stroke has left her incapacitated on so many fronts.

Some say that things will get easier as time passes and my wife will become more compliant: easier to manage.  I am not sure I am looking forward to that stage of the condition, as I will miss the period of lucidity.  We both hate it: dementia has robbed us of so much and watching the condition progress is heartbreaking.

Dementia: Blogging Therapy

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Blogging is part of my therapy; it is a means of preserving my sanity trying to cope with caring for someone who has dementia.  I can’t get to the computer for more than a few minutes at the moment as my every move is being watched and questioned.  This is not a good start to the day and I know it is not my wife’s fault: she is rarely in control of her thoughts and actions.

I hope to be back soon to try to make sense of the events of the last 12 hours or so……………………………….

Dementia: Being A Flexible Friend

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I have had some challenging roles in my time but being a carer where dementia is involved takes the biscuit.   The simple fact being you never know what you are going to get or who.  This morning I have had ‘Mrs Upset’.  I am trying to keep things respectable here; so it is safer to say she had her underwear in a twist.  Nothing I said or did led to anything positive: my wife seemed to be looking for a fight.  I stayed out of the ring and avoided a pointless contest where the outcome would only have been joint distress.

Around an hour and a half ago she woke up and thought it was morning.  She greeted me with a smile on her face in a completely different mode.  It didn’t worry me that she thought it was morning and enquired if I had slept well.  I was just relieved that my lovely wife was back in residence.

We still have to resolve the food issue as she thinks our lunch was eaten yesterday.  She asked for breakfast and has then changed her mind; as she anticipates a cooked meal a little later.  I am not sure where we will go on the food issue and may just bide my time.

We have cancelled the carer sit tomorrow as there is nothing that needs doing in the house.  It is possible that if things are favourable in the morning we might make a trip out to visit family in the East Midlands.  The initial enthusisam for a trip out has evaporated and all sorts of reasons for not going have now emerged.  It just a question of seeing how the land lies in the morning.  No pressure just gentle nudging and see if we can make it a little further down the A 46 this time.

Dementia: Finding Some Respite

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I have sought advice about my wife taking to her bed today.  It is to let sleeping dogs lie and hope that her mind set changes soon.  Trying to shift her from being tired, or her leg hurting, would likely cause further distress for us both.

It is possible that the carer will be able to encourage her to become active tomorrow.  I have now decided on a change of plan and will go out shortly after she arrives, as I have one or two things that I need to get done.  When the eye brows get long it is time to get a hair cut and I need to return the alarm to CareLink.  I simply feel it is too risky to go out and leave M in bed at the moment.  If she awoke and found she was alone in the house then anything could happen.

It is never easy to get respite as a carer, because personnel are simply not available and finances are a hurdle that has to be overcome.  So I have to see my wife taking to her bed as an opportunity to have some respite.  I can have a bit of time to myself as she dozes and rests her leg.  When you are on call 24/7 you need to take every opportunity that comes along to have a break.

Dementia: Sorry I Forgot You Can’t Remember

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I have just committed the cardinal sin.  I have reminded my wife that she has dementia by talking of events from a week or more ago.  Not only is she struggling to understand what happened, she cannot accept that she has no recollection of Black Thursday.  I have also forgotten that her memory can falter and have failed to keep to my mantra of KISSS.

On that fateful night we suddenly had three new faces in our living room.  The Rapid Response Team had turned up to try to ease tension in the household  followed by a carer for an overnight sit.  This was a poorly handled approach to giving your truly a night’s respite.

The best laid plans eh …. At 5 pm we had been told that there were no carers available to stay with my wife so I could have a break for the night.  Shortly after 10 we had three additional support staff in the house.

In retrospect I should have let another sleeping dog lie and put Black Thursday down as a bad experience.  It is quite remarkable that I am still to receive any explanation or apology for the distress caused to us both.  Then to put icing on the cake I have mentioned it to M again early this morning.  I won’t share the detail but her incessant questioning about another woman staying in the house over night have been taxing; to put it mildly.  I am hoping that sleep will shift it from her mind otherwise I am in for a rough few days: all of my own making!

When someone has dementia : Keep It Simple Stupid and Short.

Dementia: Still An Uphill Struggle

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I still feel the treacle is around and the uphill struggle continues.  It’s just been one of those days.  All my normal strategies to lift mood, or prompt some activity, have come to little.  My poor wife has eaten well and slept for most of the remainder of the time.

She is currently sitting in the dining room struggling to accept that it will be time for bed in an hour or two.  She thought it was morning and is very distressed that she is often confused between day and night.  Some say this is the most challenging time of the condition; when lucidity kicks in and there is insight that there is something wrong.  I am not sure what I can do to help as nothing I suggest has any impact on her distress.

I hope that this is just one of those days and tomorrow will bring a new dawn.  It is horrible watching someone you love so distressed and not be able to do anything to help.  Perhaps a hug might do the trick, as talking is not shifting her mind set.