Tag Archives: Distress

Dementia: A Rude Awakening

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It’s 5 am in the morning and I have been awake for an hour.  The events of the last hour have set my mind racing, and sleep is impossible.  Perhaps this ‘rude awkening’ was meant to be: it has clarified my thinking over next weekend.

Maureen returned from a bathroom break feeling cold.  She put the light on to recover a blanket that had slipped off the bed.  Then she left the bedroom, and everything went quiet until I heard her call my name. I found her downstairs, in the dark, saying that she was: ‘lost and couldn’t find her way back to bed’.  As often happens she is now fast asleep, and I am left awake with my thoughts.

This morning is a stark reminder of her presentation.  One constant is the unpredictable nature of her mixed dementia. On occasions  Maureen can present being in complete control of her faculties.  At other times she is overtaken with abject confusion, and ensuing distress.  It is therefore not safe to leave her to her own devices for anything other than very short periods of time.

My rude awkening confirms what is needed for next weekend, when I will be visting relatives: round the clock care in our home.  Anything else would be nothing short of a negligent approach to her welfare.

Dementia: ‘When I Need You’

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I always try to listen to When I Need You by Leo Sayer on this day every year.  It is something I have done for the last 40 years as it is the birthday of Annette, my first wife, who died at the age of 29.  She passed away after a very brave battle against cancer.  I can recall listening to Leo on many occasions and getting great comfort from the words of the song.  So 40 years later, and once again my wife has a diagnosis that may well shorten her life.  However, the similarities in what has happened to these two beautiful people don’t just end with being married to the same man.

Annette, and Maureen, have both experienced a delayed diagnosis of  life threatening conditions.  All of the tests Annette had for her condition suggested that the lump in her breast was benign.  It was only when we insisted on a  biopsy that we were given the news that the lump was malignant.  We will never know but earlier intervention may have led to a different outcome.   There is no doubt that the options for treatment that are now available, may well have extended her life.

Maureen has also experienced delays in her diagnosis.  There is no doubt that had she been sent to the Stroke Unit at Scunthorpe her treatment would have been different.   It therefore seems likely that the damage from stroke could have been contained with the use of thrombolytic medication.  She may well have regained her vision, and dementia may not have occured.

One of the shining star in both Annette’s and Maureen’s experience has been the contribution of General Practitioners.  Annette’s G P looked after her like a daughter, and shed tears on her passing.  Dr Munjal couldn’t do any more to help us on our journey with dementia.

One other positive about Dr Jarrett, who looked after Annette so well, he supervised the home delivery of three children to my ex wife Julie.  He has sadly passed now but he was there as Juile delivered, Steven, Anna and Esme.  We are so lucky in the country to have such skilled and devoted G P’s

Dementia: Maureen Is Missing

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Yesterday evening it happened once again; I turned my back for a few minutes and Maureen went missing.  I had spoken to her few minutes or so before, as I took a call from one of my daughters on my mobile.  Five minutes later  there was no sign of Maureen in the immediate area, so I took to the car to widen my search.  I eventually found her making her way in the general direction of home.

There are many aspects of concern from this incident.   When I picked Maureen up she said she thought: ‘I had gone to work, and didn’t expect me home for some time’.  Evening was drawing to a close and light was fading.  The temperature was dropping and she was clad: in a T shirt, wearing light joggers, and shod in slippers.  She commented that few people were around to help her find her way home.

As we travelled the short distance home she was completely unaware that her behaviour could have caused any concern.  When we got back in the house she thought it was strange that the light was fading, as she thought it was morning.  She expected that we would be taking breakfast as our next meal.  Later in the evening her behaviour raised further concern.

Maureen often goes to bed early but last night she was frightened to retire unless I joined her.  This meant missing ‘Match of the Day’ and I revealed my addiction to football in yesterday’s Blog.   However, as she was obviously so tired I agreed to an early night.

The developments of yesterday are an illustration of Maureen’s current presentation.  She has no concept of person, place, or time, and her behaviour is unpredictable.  This means I have to maintain constant vigilance to ensure her welfare.  Little wonder that I need a break no-one could sustain this 24/7.   The Pussy-Footing Around  simply has to come to an end and a revised Care Plan along with a Carers’ Assessment is required as a matter of urgency.

The irony in all of this is that Maureen went missing while I was talking to Anna on the phone.  She is the Campaigns Director for a Missing Persons charity – you couldn’t make it up!

Dementia: Not Again

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There are times as a Care Partner, for a loved one with dementia, when you think it couldn’t get any worse.  Then it does, and you think it couldn’t get any worse.  Then it does.

This has been my experience today.  Once again our social worker is ill, and her Line Manager is on holiday.  So yet again no progress on my Carers’ Assessment.  This all makes me anxious about plans to visit family in a couple of weeks.  There has been a disconnect between the social worker and the Care Agency before, and I have had to cancel plans at the last minute.   They both blame each other, and I have been left frustrated and out of pocket.

Anna my middle daughter told me a while ago that she thought she had inherited my tendency for impatience.  I wonder if her nerve will hold, if I have to cancel on her yet again.  No such problems with my mum and brother.  Their dementia means they have probably  forgotten who I am, after not being able to get down to see them for so long.

Dementia: A Care Giver Knows

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I cannot think of any better words that sum up what it is like for me to be a Care Giver to my wife than the following:

A Caregiver Knows…

Did you ever wonder how much pain and grief your heart could take?

A caregiver knows.

Did ever wonder how strong you are, how many things you can do at once, or how many failed attempts you could endure?

A caregiver knows.

Did you ever wonder if frustration, anxiety, or sheer exhaustion could actually kill you?

All too often, caregivers know this too.

Have you ever cared for someone, who instead of getting slowly better, is slowly fading away, piece by piece… right before your very eyes?

Have you ever felt the despair and hopelessness of that?

Caregivers for dementia patients know this despair and live it every single day.

The remainder of this piece can be found at: A Care Giver Knows

Dementia: Whatever Next?

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Life is never straightforward when you are living with dementia.  Yesterday didn’t get off to a good start with news that Chloe brought with her when she turned up for the carer sit.  Her conditions are to become even worse when the new Agency takes over next week:  the hourly rate is going to be reduced and the slight enhancement for working weekends is going to be removed.  I listened intently to the news, and questioned if such changes were legal with the regulations around transfer of undertakings.

I have mentioned before that paid carers and Care Partners need to get organised.  A Trade Union for all those involved in the care industry is needed.  I can see no other way forward to end the blatant exploitation that is currently taking place.  We decided to keep the bad news from Maureen but it is posiible that she has ‘came out in sympathy’: taking to her bed following Chloe’s departure.

It looks like the clothing issue has resurfaced yet again.  Maureen spent a long time after Chloe had gone deciding that none of her clothes were suitable, and retreated to her bed exhausted.  Underwear that appeared to be suitable has now been declared too tight, and having no clothes has surfaced again as an issue.  She stayed in bed for the remainder of the day despite my gentle encouragement to get up.  That meant that her only meal of the day was breakfast and she did not taken her evening blood thinner.  I saw no point in doing battle over that – she is reluctant to take it at the best of times.

My optimism about solving the clothing issue has diminished.  Perhaps apparent progress being little more than a false dawn in the general discomfort that is a feature of Maureen’s presentation.

I had a relatively a positive phone converstaion with the new Care Agency yesterday afternoon. Time will tell if they match their compassionate rhetoric with practise.  It is not going to help that the hard working Chloe, and her colleagues, are going to have less in their wage packets.

Dementia: ‘The New Reality’

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I have mentioned before the words of a Consultant at the Memory Clinic following Maureen’s diagnosis: ‘You will have to get used to the new reality.’  At the time I hadn’t got a clue what he was talking about.  Eighteen months down the road and Maureen’s reality can be grasped from her words below:Featured image

  • ‘Other people keep moving my things from where I have left them.’
  • ‘Why do people have children if they can’t afford to buy them clothes.  Haven’t my parents got any money?’.
  • ‘Where is my mum?  Why doesn’t she come to see me?’
  • ‘Why don’t my children come to see me?  Don’t they know where we live?’
  • ‘Have any of my family ever been here to this house?’
  • ‘How do I know we are married?  Where is the Marriage Certificate and wedding photos?’
  • ‘Please tell me where we met?’
  • ‘Where are the other people who own this house?’
  • ‘Do the children know where we are going today?’
  • ‘Are you going to work today?’
  • ‘What day, time, month or year is it?’

The above list is only a snapshot of the new reality.

The Counsellor at our Medical Practice puts it in a nutshell.

Dementia means having no concept of PLACE, PERSON or TIME.

Dementia: Funny Friday

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It was a funny old day all round yesterday.  Maureen seemed exceptionally tired and so we didn’t have ‘breakfast’ until 4 pm.  When I returned from shopping in the morning Chloe said Maureen didn’t want to get out of bed because she felt tired.  Chloe had taken her a drink up and chatted to her in the bedroom.  As always Chloe had smartened up the house in my absence and ironed all the clothes in the basket.

I popped up to see Maureen a couple of times in the afternon and she was still sleepy.  During one of my visits she complained that Chloe had woken her up to discuss how her brother and his wife were having discussions about the forthcoming addition to her family.  She also mentioned that someone had told her I had been drunk on the previous evening.  Rather puzzling as I had been with her all night and not a drop of alcohol had passed my lips.

Porridge was served about 5 pm; along with normal accompaniments. We then went out for a short walk to retrieve a discarded dusbin that I had spotted on a previous stroll.  Maureen enjoyed the walk but had no recollection  we were following our steps from earlier in the week.  Nevertheless, she could see that another bin for compost making would be helpful to my horticultural pursuits.

Friday fish and chips was prepared and consumed as normal; followed by fresh fruit salad and ice cream.  You will note that we are taking the advice about healthy eating seriously.  Also the glass of sherry, or two, can only have helped any stroke prevention regime.  I’d better add Maureen only had a very small glass and left the rest to me!

Maureen got into a heck of a mess clearing up the chaotic evidence of my efforts in the kitchen.  I had ‘bobbed off’ in the chair to find her disgruntled over the kitchen sink.  Clean pots and pans were alongside those that had not been washed on the draining board.  It was not surprising she had got in a mess – I had  caused it.  I have to tidy up as I go along as I am being unfair on my washer up!

It will be interesting to see how things go today.  Hello….  Maureen has just woken up very confused asking me who has been on the phone.  There have been no calls this morning.  The way she is looking at me it is likely she is unsure who I am.  She has just asked me:  ‘ if am going to work today’.   Now it’s: ‘Where is the other Paul; not you?’

Just another day at the office then………

Common Symptoms of Dementia

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I have just come across this graphic that highlights the common symptoms of dementia.  Maureen exhibits them all every day of her life as her dementia progresses.

Dementia: Additional Care Needed To Cope With Further Decline

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I could give examples galore that illustrate how Maureen’s dementia is progressing and the impact it is having on me, Perhaps just a glimpse of the last couple of days will suffice.  On Tuesday night Maureen insisted that she always slept on the sofa as she didn’t have a bedroom here. At 6 am on Wednesday morning she awoke and said: ‘Where is everybody?  I thought you had all gone out and left me on my own again.’  She was very frightened; confused and agitated.  Her confusion continued well into the morning.   When a carer knocked at the door at 10 am Maureen greeted her with:  ‘Hello who are you and what are you doing here?’.  Later in the morning she confided in me that it was: ‘Very naughty of the Care Agency to send people without giving us warning.’  This morning she woke at 2 am and asked: ‘if it was time to get up’ and the same again an hour later.   I could go on……..

The top and bottom of all this is Maureen is extremely confused for large parts of the day.  She is very frightened if I am out of sight, as she fears she has been left on her own.   On occasions she is not sure who I or the carers are. She frequently doesn’t know where she is. Her ability to distinguish between day and night has gone.  Generally, her attempts to assist with household tasks only helps rather than hinders if she is continually prompted.   In the last few days she has been outside the house partially dressed.  It is no longer sensible to leave to Maureen in the house on her own.

I now feel I have to be on constant watch to keep Maureen safe and sound.  This is fundamantelly different to her presentation when our current Care Plan was drawn up.  Therefore, the demands on me as a Care Partner have increased significantly.  Hence the need for an urgent review of our situation.

There are a number of things that need to happen to cope with the ongoing progression of Maureen’s dementia.  Something needs to be done to deal with my present level of exhaustion as carer burnout may be near.  I have informed our social worker accordingly and Tracey is trying to arrange additional support.  Unfortunately she is on a training course for the next couple of days and is dealing with a  Care Agency that continues to be in turmoil as it hands things over to another concern.

I have managed to progress a couple of matters that should make life simpler and safer for Maureen.  Yesterday morning I  pared down the clothes in her wardrobes so that choice is no longer so much of a burden.  I am hoping that fewer outfilts will simplify life for her in the morning.  In addition, I have ordered a walkie talkie type monitor so that Maureen can contact me immediately when I am out of sight.  This will also allow me to be in the garage or garden and know that Maureen is safe in her own surroundings.  I am hoping that this will reduce the times when anxiety kicks in when Maureen thinks she has been left alone in the house.

So Monday becomes another D Day here with the social worker calling around one’o’ clock to see how things are going.  It would be great if she has been able to set up a couple of additional sits before her visits.  That would really help to get things off on a positive note as soon as she walks through our door.

This is a very early morning post and I am hoping that now I have got this off my chest I might manage a little more sleep.