Category Archives: General

Dementia: TGIF

General

What a day Thursday turned out to be.  Talk about after the Lord Mayor’s Show of Wednesday : yesterday certainly took the biscuit. It was a day of extreme contrasts where an emapathetic husband was called for in the morning, and cast adrift as a stranger, or ghost from the past, at bedtime.

Maureen’s early morning concerns were once again about whether her daughter had died.  She couldn’t sort out if her thoughts were a nightmare or reality.  I listened, held her tight, and reassured her that she wasn’t going mad.  I explained that  stroke had damaged her memory of the sad events surrounding Denise’s death. Maureen also wanted to go over the events of her baby son dying over 50 years ago.  Once again I heard a harrowing tale of how she presented her lifeless child to her mother, and asked if he was dead?

It is always difficult to know how to deal with this unresolved grief: particularly as my own approach to premature death has not been psychologically healthy.  When my first wife, Annette, died at the age of 29 I tried to carry on without having a period of sadness: something I paid for later.

Later in the day I took advice from my Admiral Nurse and may seek guidance from Cruse, to check out if there is more that can be done to help Maureen with her unresolved grief.  However, I may not have done so bad as Maureen thanked me and said: ‘now she knew she could move on’ – if only!

The day was realtively uneventful with Maureen spending a lot of time resting.  When I went to dispose of unused tablets Yvonna our local chemist raised concern about the number of blood thinners that had not been taken.  On her advice I contacted the G P and he has encouraged me to battle on trying to persuade Maureen to take Rivaroxaban.

I decided to join Maureen in our bedroom shortly after nine but  she left me in no doubt that I was banished to the spare room once gain.  With a smile on her face she told me that: ‘we didn’t sleep together’.  She then proceeded to bang doors and move furniture about.  This went on for quite some time along with complaints that there were: ‘no locks on the door and there should be’.

At 1.30 am I awoke to hear Maureen on the landing searching for socks.  I joined her in the search and over half an hour later I eased into bed beside her as I could see she was extremely confused.  Her search included rummaging through her drawers considering all sorts of clothing to add to what she had already got on this went on for half an hour or so.

After a journey to the bathroom around 3.30 am Maureen told me that: we needed : ‘do something about the animals in the bed’.   She went on to enquire: ‘what they had said about our problem:  probably a reference to the people who are in charge of ‘this place’.

Around 4 am I decided to call it a day and got up to tidy things up a little.  Despite an eventful night this is longer than I have usually managed to stay in bed for the last few days.  I clearly have to do something about my sleep pattern as I can’t carry on like this!

There’s only one thing I would say about today: TGIF.  Chloe, today’s carer, will be here at ten and I have a physio appointment at eleven.  This gives me an acceptable reason to go out, and have experiences where dementia does not impact on opportunities to converse.  The only problem is that Oliver, my physio, is a Manchester United supporter and he isn’t going to be in the best of spirits at the moment.   However at least he will know who I am!

Postscipt: Never blog early in the morning you might just post at an unearthly hour and I have!

Dementia: Sleeping Beauty Needs Her Rest

General,

Maureen has now been in bed for fifteen hours.  I enticed her to have a nap alongside me, late yesterday afternoon, as I knew she needed to doze after a very busy day:  Sleeping Beauty has earned her rest.

As her mouth soreness and catarrh was ‘driving her mad’ she went to see her G P yesterday morning.  As always, Dr Munjal was extremely supportive, and gave her a number of options to resolve her difficulties.  He understands, very well, her intolerance to all sorts of medication, and is always very wary of introducing more tablets to her daily regime.  The good news from the consultation was that her blood pressure is well under control.

Maureen was very pleased with the outcome of her consultation: particularly the news on her blood pressure.   Seeing that she was in good spirits I pushed my luck to see if she could get her hair trimmed.  She responded postively to my suggestion, and luck was on our side as Mark squeezed her into his busy schedule.

Mark is one of the many examples of the ‘dementia friendly’ nature of Cleethorpes.   Lots of people in our neighbourhood, and beyond, are very supportive to us as we continue on this journey.  I could fill the page with examples of those who ‘go the extra mile’ to help us day after day.  While Maureen was in Mark’s chair I popped up St Peter’s Avenue to thank Specsavers for their recent assistance.  Lucy seemed delighted with the news that Maureen was getting used to her new glasses, after the uncertainty that had arisen when she first tried them on.

When I made it back to ‘Hairsmiths’ Maureen was sitting in the window looking a picture.  In a short space of time Mark had made her look like a model again – I kid you not!

As always when you have had a good sheering it takes you a while to get used to a shorter mop, and surely enough Maureen struggled with having a cold neck for a while.  Maureen spent quite a time in front of the mirror on our return home, checking on Mark’s work with a degree of satisfaction.

The remainder of the afternoon passed in a normal fashion: the chef at work and his assistant tidying up the debris.  As the afternoon was drawing to a close I realised that I had to encourage Maureen to rest after a busy day.  With a bit of persuasion I managed to get her to lie on the bed with me for a while, and that is where Sleeping Beauty remains as I post this Blog.  To put a football slant on things: ‘the girl done well’.

Dementia: Neuroplasticity In Action

General

In October I outlined my approach to being a Care Partner to Maureen.  Her recovery from stroke continues, as does improvement in her cognitive capacity -neuroplasticity in action.  I am now using  a numbered list to clarify the approach we are taking to life:

  1. Maureen’s dementia is not a mental health condition.
  2. The brain does find avenues to re route or repair: neuroplasticity.
  3. Some recommended supplements are included in our diet: including coconut oil.
  4. We take regular exercise:  Maureen has developed her own circuit in our garden.
  5. We build cognitive stimulation, and lots of fun, into daily living.
  6. We avoid activities that separate and label participants
  7. I try to refrain from giving Maureen any bad news: others should do the same.
  8. I need to ask relations to keep phone calls short, and never ask questions.
  9. I try to avoid saying : ‘Do you remember?’ to Maureen.
  10. I try to talk less and listen more.
  11. I attempt to grasp Maureen’s reality at any particular moment in time.
  12. We play music that has meaning for Maureen.
  13. We are trying to simplify our lives and build in more routine.
  14. Maureen tires easily and needs plenty of rest.

I am sure I have missed out one or two things from the above list:  after all our approach is a ‘work in progress’. Maureen continues to make excellent progress and we all need to sing from the same hymn sheet to make sure she maximises her recovery from stroke.

Dementia: Superb Poem By A Man Diagnosed With Alzheimer’s At The Age Of 50.

General

Behind The Smile

Behind the smiles lies a broken man,
Shattered in so many pieces,
Just wanting his old life back again,
Away from Dementia`s crease`s,

Behind the smile, the man cries out,
To all who want to hear,
But his sobs and woes are deafened out,
By the sound of drying tears

Behind the smile, is a man so scared,
Shaking every day,
From fears and tribulations,
That often comes his way,

Behind the smile, the man’s worn out,
So tired from lack of sleep,
Secretly waiting for the end,
To death he slowly creeps,

But behind the smile, of this broken man,
Lays the person he once was,
Still smiling to one and all,
WHY? Well just because !!

Please share
Norrms, Diagnosed with dementia, eight years ago, aged just 50 xxxxxxxx

I have copied this poem with permission of the author a contributor to Talking Point.

Dementia: Flogging A Dead Horse

General

When our central heating boiler developed a fault a couple of weeks ago I had a number of conversations with the Heating Engineer.   Craig compared our heating system to: ‘flogging a dead horse’:  it’s nowhere near as efficient or cost effective as it could be with modern radiators to match our boiler.  There are parallels here with Maureen: there is little point in encouraging her to do anything when she is tired.

I now realise that she gets all the stimulation she needs on Monday, Wednesday, and Friday mornings.  When Chloe or Gail are here she is in full flow.  As I sat at the keyboard yesterday morning I could hear Chloe and Maureen catching up on their respective weekends.  Apart from the occasional bit of repetition Maureen was conversing eloquently.  It many ways it was a joy to overhear but part of me thought OMG she’s going to be worn out for the rest of the day.  Maureen rested her eyes as she put it for a couple of hours after lunch, worn out by her morning’s endeavours.

At various times of the day I try all sorts of things to lift Maureen’s mood or provide cognitive stimulation.  Cooking and music go hand in hand.  When the going is good my dance partner will appear and pull me away from a hot stove.  Later in the evening it is unusual if we aren’t singing along to someone or having fun with a crossword.  I have even eased her into using her new glasses, knowing they are still on trial.  All I need to do is: keep a watchful eye on Maureen’s energy levels, stay by her side or she might start ‘packing to go home’, or wander off on one of her walkabouts‘ .

It is easy for me to understand that Maureen tires easily and needs plenty of rest.  What she also does is frequently resort to the Hostess Mode to persuade professional staff and close family that all is well. This may mean that occasional visitors have no idea about how she really is, and often engage her well beyond her physical capacity.  It is difficult for them to understand how fragile she is, as they never see her sleeping for days, after she has kept herself going for their benefit.  One of my tasks is to try to help them understand that she needs periods of rest throughout the day, otherwise their visits lead to days of exhaustion that may well have a long term impact on her wellbeing.

 

 

 

 

Dementia: Code of Conduct for Caring

General

There is already a Code of Conduct for Care Agencies, and Care Staff, with guidance for all interested parties.  I would hope that Hica (our Care Agency) are familiar with these documents.

In future if our regular carers: Chloe, Gail and Gemma and are not available then replacement staff need to have some information about us.  This needs to include details of:  Maureen’s current presentation, personal history, and how we run our household.  They also need to have had considerable experience of supporting clients who have dementia.

It was evident that the carer who arrived on Saturday morning knew nothing about us.  It is fortunate that I decided not to go to Coventry, and Maureen didn’t wake with a stranger in our house.  Maureen’s reaction to this well-meaning elderly lady was to go out for a walk because she is fed up with people she doesn’t know  ‘interfering in our lives’. As she often says: ‘the house is not our home any longer’. Her assertion is just another sign that when she has energy her ability to think rationally and logically is intact.

I made a wise decision to cancel my plans to go to Coventry on Saturday. We also had a very lucky break on the same day:  Maureen’s cousin spotted her heading into Cleethorpes; going in the opposite direction of home.  He pulled up in his car as she was attempting to cross a very busy road.  Terry described Maureen as: ‘looking very confused and exhausted’.  I’m not surprised by his description as she had been walking for well over an hour: ill clad on a very cold and windy day.  I had been out looking for her  around her usual haunts, and I was very relieved to see a note in our letter box saying that she was in his safe hands.

I will be rather reluctant to allow Maureen to run off again: even if it’s to escape from strangers who have been sent her to support her.  However, prevention is always better than a cure, and there is a simple solution to all of this!

 

 

 

Dementia: Code of Conduct Needed!

General

As the majority of professional staff are not at work today I will deal with our experiences on Saturday morning tomorrow.   What I am intending to do is to suggest an interim Code of Conduct for Care Agencies and Carers. This will hopefully avoid a stranger arriving on our doorstep, ever again, without: any prior knowledge of Maureen; our set up; or training in dementia awareness.

Todays post is my tentative attempt to help family members be supportive over Christmas.   It is a copy of an Email that I sent yesterday  to clear up any misunderstanding over our capacity during the Festive period:

‘There have been significant changes in Maureen’s presentation in the last couple of weeks.  Periods of confusion are more frequent and intensive.  Maureen tires easily and sleeps a lot.  I disconnect the landline when she is resting.

Maureen is still be able to put on a ‘hostess mode’ for visitors, and professional staff, that masks her general presentation.  I continue to seek  professional advice on the best way to provide support.
Our plans for Christmas have to be very conservative, if I am to cope.  We will not send any cards or buy presents.  It is unlikely we will put up any decorations.  Our time will be spent here.  Visitors are welcome in very small numbers; for short periods of time, providing they are spaced out.  We will be unable to provide food other than cake and biscuits.
You will appreciate that this is a very tough time for us and your understanding is appreciated.
Kind regards’

 

Dementia: A Lucky Break

General,

Whatever the reasons for the mix up over carers for today it now has to be seen as a lucky break.  With Maureen’s current presentation my suggested arrangements would have put her at risk.  Leaving her to cope alone for three hours in the morning and two in the afternoon were at best optimistic: now I view them as niave.

After the events of the last twelve hours I am pleased that I have already cancelled my plans to travel to Coventry this morning.  It would take more than the time I have at my disposal to detail events of the last 12 hours.  In summary there have been periods of real confusion; about time, place, and person at a level I have not seen before.  This has included such assertions as ‘you do not belong in my bed to why do the owners of this place not do this that and the other’.  Maureen has also been hearing voices and seeing people that are not here.  This morning she has no recollection about my plans to go to Coventry.

If Maureen continues in this vein I will have to try to ease her to Out of Hours G P services at the hospital.  Unfortunately, my attempts to get her assessed earlier in the week failed.  It might be better to keep her calm over the week end and try to get her to see her own G P on Tuesday – he is not in work until then.  The risk of seeing other people is that they may not understand her intolerance, and reluctance, to take medication.  Dr Munjal treats her with the understanding and compassion that she deserves in all her interaction with other people.

In terms of seeing my mum and family in Coventry it’s back to the drawing board.  I no longer think it is safe, or sensible, to leave Maureen to her own devices while I’m over a 100 miles away.  A tiring day trip to Coventry is no longer a practical option as I’m pretty tired, and not in great health at the moment.  What I now need is an overnight stay where Maureen is looked after, in our own home, by familiar faces.  Simples as the Meerkats would say.

 

Dementia: I Don’t Believe It Once Again!

General

I am breaking my new rule and blogging again today  because I need vent.   Once again my plans to see my mum and other family members have been frustrated.   I have just called off tomorrow’s trip  because Maureen would have been looked after by a carer she had never met before.

It isn’t rocket science to understand that routine, and continuity, are very important when someone has dementia.  So imagine the scene tomorrow when I leave the house shortly before 7 am to return by   9.30 pm.  At 10 am a total stranger arrives in the house.  Maureen may already be distressed that her ‘tea boy’ has not delivered at 8 am: perhaps she has been wandering around for a couple of hours looking for him.  Chloe one of our regulars had mentioned that she would be popping in, and now a new face 30 years older is in the house.

The stranger would have stayed until 1 pm unless Maureen had given her early release.  Then she was due to return at  3 pm for 6 hours.  Imagine having to spend a total of 9 hours with someone you had never met before.  Why would you want to do it?  Imagine how difficult it would be if you had dementia.

A short while ago I phoned up the Agency and expressed my concern.  I asserted that the arrangments were bad practise and totally unsuitable for someone who has dementia.  The person at the other end of the phone totally agreed with me and apologised.  As Victor Meldrew would say: ‘I don’t believe it’ !  How on earth can this happen when a Care Agency know the requirements of its clients?

Dementia: Preserving Independence

General, Uncategorized

It is possible that I’m sailing close to the wind this morning by deliberately giving Maureen late notice that I am going to Coventry tomorrow.  However, after another difficult day on the clothes front, mentioning my trip yesterday would have been unhelpful.  Therefore, I will broach the subject with Maureen once Chloe, today’s carer arrives.  This will give Maureen an opportunity to chat about the amount of care she would like on Saturday.  Our social worker is on standby to fine tune the arrangements once Maureen has outlined the level of support she feels she needs.

My attempts to visit my family in Coventry have been frustrated on a number of previous occasions.  Maureen and I have sometimes had plans to go and then she has not felt up to travelling.  A couple of weeks ago I postponed a visit as I didn’t think it fair to leave Maureen after a rather difficult few days. On other occasions carers have not been available to stay with Maureen in my absence.

Carers are available to stay with Maureen for the whole time I’m away on Saturday. What we are all trying to preserve is Maureen’s independence, and at the same time ensure her safety.  This is not a simple path to tread, as Maureen’s presentation can change so quickly.  Therefore,  late notice of my plans for an away day seem the most pragmatic solution to a challenging situation for us all.