Category Archives: General

Dementia: What Are We Going To Do Today?

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I recall some sound advice I received from a Mental Health Nurse during one of my many periods of depression: ‘Never go to bed without some idea of how you are going to spend the next day.’    Whenever I bump into him I always thank him for this simple piece of advice; because it works.  His advice is crucial to follow as we travel on our journey with dementia.  In my detective role ( as advised by Teepa Snow) I think Maureen’s regular query each night about ; ‘what are you doing tomorrow?’ is possibly more about: ‘what are we going to do tomorrow?’   So I always try to plant some ideas on how we might spend the following day.

As it is Saturday today there are a number of options on the horizon. There is likely to be a Car Boot Sale just across the road, and sometimes we pop across to search for bargains.  With luck I will get that fig plant that I want for my son in law.  I have also mentioned that we could visit the fruit and vegetable market in Grimsby.  We always enjoy wandering around the stalls, as there is a feeling of going back in time in such surrounding: an escape from the impersonal nature of Supermarkets.

At this time of the morning I really have no idea how we will spend our day.  The important thing is I have planted a few ideas that may just come to fruition.  It is bad enough when you are depressed and you can’t think how you are going to spend your day.  Such thoughts even surface when you are retired and have the whole day before you.  I would guess that none of these situations are comparable to having dementia, and not being able to remember how you used to spend you days. However you have to remember all of this is speculative: I am only a budding detective with limited experience of being a Care Partner to someone with dementia.  On the other hand perhaps I am gradually becoming the back up brain (BUB) that my pen friend Kate (Swaffer) has patented in Australia.

Dementia: It’s Just Another Day

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Maureen and I have never regarded it as important to celebrate our birthdays with anything special.  We are much the same about Christmas.  I always say to her that her presence is my present.  We have often been away around Christmas and joked that: ‘I paid for your holiday and you paid for mine.’

For a few years we gave each other cards from a selection of those we had sent and received in previous years. However, yesterday was rather different from previous Wedding Anniversaries.

During the early part of the morning Maureen looked through her birthday cards.  Although the event was a couple of months ago she has only opened her cards recently.  Some of them are still on display in various parts of the house.

When Chloe, our carer arrived, Maureen didn’t mention that it was a special day for us.  In fact they spent a lot of time together, before breakfast, chatting  in the warmth of the garden. I may be wrong but I think that Chloe has an eye on some of the tomatoes that are ripening!

We  passed the day in our normal fashion with me preparing meals, and Maureen clearing up the clutter. In between we played some of our favourite music and had the odd waltz around the kitchen.  Actually it may have been a slow foxtrot; as taught by ‘Kevin from Grimsby’s’ dad.  I’m not sure Keith Clifton would have wanted to take any credit for our version and we would not have got a ‘Ten from Len’.  No matter we had a lovely day, despite Maureen being unaware of the significance of the day.

None of this is surprising with Maureen’s current presentation.  She has little concept of time or date.   Sometimes, her comments on the weather show she has no idea what season it is.  I try to ‘stick to the book’ on all of this: I only correct her if it is essential.  Putting her right about time is only really needed when I am trying to get her to bed down for the night, and she thinks it is morning.  Although she wears a watch it is too small to see, and clocks don’t seem to help at all.  I am beginning to wonder if she is still able to tell the time.

So yesterday was just another day, as far as Maureen was concerned.  The fact that it was our 17th Wedding Anniversary almost passed her by.  In fact, if I had reminded her how long we had been together she would have stared at me in disbelief.  She has little memory over many important events in her life, and that may well be a blessing in disguise.

Two musical themes on the day:

Another Day by Paul McCartney

Another Day In Paradise by Phil Collins

Dementia: The Importance of Staying Positive

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If I don’t live by the graphic on the right things are going to get really difficult here.  My appointment with the social worker, to review my Carers’ Assessment, has been postponed yet again.  Therefore, we remain saddled with a Care Package that is totally unrelated to Maureen’s presentation.

It is rather difficult to progress anything without the social worker’s blessing.  So all I can do at the moment is tread water and try to cope.

What I have to ensure is that my tiredness, and irritation, is not picked up by Maureen.  It is time to keep a smile on my face and tough it out over the weekend.  I will need to focus on working with staff at the new Care Agency on Monday when they take over the reigns.

We are fortunate that Maureen’s youngest son will be here on Sunday.  He has an incisive mind, and a balanced approach to things.  He couldn’t be coming at a better time.  We need wise counsel before we take our next next steps on our journey with dementia.

Dementia: Two Important Ladies

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Today is our 17th Wedding Anniversary – an important event in itself.  We don’t normally do anything exceptional to celebrate, so we willFeatured image probably have a quiet night in.  As the ‘in house chef’ it is my responsibility to create dishes suitable for the occasion.  It is also the day when I am meeting our social worker to progress my Carers Assessment.  That is where the other woman in the photograph: my mum comes in.  I need to go to visit her as soon as possible.

Mum is 94 now and lives in a Care Home in Coventry.  She is rather forgetful and has vascualr dementia.  If I don’t get to see her soon she may forget who I am.  It is likely that she will deny I have been to see her within half an hour of my departure.  However, just to be able to take her out for a short ride around local country lanes is all she asks. She remains so grateful for such small pleasures.  If she behaves, I might even take her to her favourite Country Park and treat her to an ice cream.

The meeting with the social worker is opportune after the events of this week.  It is now time to draw a line on Maureen wandering or being left to her own devices.  We have had more than our share of good fortrune on that front: chancing our luck any further is not an option. This raises the thorny issues of independence and deprivation of liberty.  These mattres have to be dealt with sensitively, as it is vital for us all to recognise the sterling efforts Maureen makes day after day in the face of adversity.

I chose well 17 years ago and it is until ‘death do us part’ as we continue on our journey with dementia.

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: Playing Your Cards Right

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It must be a real dilemma for paid carers to know what to do with Maureen when housework is done. When  I returned home yesterday Rosie mentioned that she had been playing ‘Fish’ with Maureen.  I enquired about the card game and Rosie suggested that Maureen would explain all to me later. I thought no more about it until Maureen raised concern about the game, shortly after Rosie had gone.

Maureen had no idea what ‘Fish’ was all about, and said she found the whole game confusing.  She mentioned that eventually they had ended up playing Snap, which she clearly found infantile.  Unfortunately, it gets worse than that: Maureen thought the whole card playing was part of an assessment.

She felt that Rosie was trying to establish ‘if she was mad’ and needed to be taken away to a Mental Hospital.  These fears about assessment, and being ‘locked up’ are never far from the surface.  Maureen often fears that a conspiracy is taking place to put her away in some awful kind of residential establishment.  I specualte that this is the result of seeing her father locked in one of the old fashioned EMI Wards.

Helping Maureen find pleasurable activities is a challenge to us all.  It is likley that she has forgotten how she used to fill her time.  Sometimes she stays in bed when she has no clear plans for the day ahead.  Housework often leads to complaints about: ‘it being worse than having a job’.  I am not sure there is a simple solution to trying to direct Maureen into activities that she might enjoy.  It is something that I need to think about with some urgency.

One thing is clear she doesn’t like me going out and leaving her with carers.  Therefore, she will continue to complain about her pursuits when carers are here; because she resents being ‘baby sat while I go out and enjoy myself.’  I will have to live with her discontent if I am to have any respite from being a Care Partner.

Dementia: Clear and Present Danger

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Some additional measures are now needed to keep Maureen safe. In the last two days I have managed to track her down on walkabout being shepherded back home by two kindly folk.  On Tuesday she was walking arm in arm with an elderly man; Clear and Present Danger: Bragging Rightsoblivious to any concern about her lengthy absence.  Yesterday she was in the company of a middle-aged woman who  guiding her back home.  It is fortunate that she met such friendly dog walkers on her travels.

It appears that Maureen has increased the range of her walkabout.  She is now venturing as far as the Country Park before she seeks assistance to find her way home.  Her current walkabout are now a cause of real concern for your truly.  It is no longer simple to track her down, as she increases the range of her tours of the local area.  In the past I have given her a measure of freedom before tracking her down.  The time has now arrived to review my approach to her walkabout to ensure her personal safety.

Maureen is very vocal about her independence and has indicated that restriction will lead to dire consequences.  She feels she is safe to be both left to her own devices in the house, or on walkabout.  In fact, she has made it clear that if my concern about her independence continues she would elect to end our relationship.  I fully recognise that this is dementia robbing Maureen of any realisation of the risks involved.  Unfortunately, we are no longer in a position to hold rational conversations with my dear wife.

Preserving Maureen’s independence and safety are of paramount importance, as we continue our journey with dementia.  Such matters are of immediate importance and have to be resolved before we consider the small issue of my Carer’s Assessment.  It is fortunate I am meeting with our social worker on Friday morning.

Dementia: The Way Ahead

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The next few Featured imagedays are important in our journey with dementia.  The appointment with our social worker on Friday morning will be the start of my Carers’ Assessment.   I need to take advice on how to develop a life alongside being a Care Partner. There are lots of aspects our lives that have fallen by the wayside, as we have grappled with the consequences of Maureen’s stroke and onset of dementia.

The following list outlines my current aspirations:

  • Visit family and friends on a regular basis
  • Plan holidays
  • Resume meditation classes
  • Resume tai chi classes
  • Return to ballroom dancing classes
  • Return to some form of painting and drawing
  • Attend some form of educational/interest group/class
  • Read more books and other publications
  • Improve my DIY skills
  • Resume involvement in the Labour Party
  • Continue with my attempts to improve the diagnosis and treatment of dementia

I am sure I may well revise this list in the next couple of days.  One thing for sure Cleethorpes is a lovely place to live, as you can see from my photo above of the sun rising over the Humber.

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.