Dementia: Super Saturday

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There is only one way of summing up yesterday: ‘Super Saturday’.  They say your luck runs in threes and yesterday it did.

Gemma our carer arrived on the dot at 10 am and provided superb support throughout her stay.  When you consider it was only the second time she had been here her performance could only be described as outstanding. Following a brief chat in our dining room she blended in as if she had been part of the furniture and fittings for ages.

Gemma is extremely intuitive and realised that Maureen was puzzled by a new kid on the block.  She therefore played a good card by offering to ‘pop to the shops’.  On her return she played another ace by ironing some bedding.  Then she slipped into the lounge to have a cuppa and chat with Maureen.  I am pleased to welcome Gemma into our support team.

With Gemma in the house I managed to scan the Internet for more resources on dementia and discovered Improving Dementia Education and Awareness (IDEA)  at Nottingham University.  What could be better than somewhere that is close by , at a University where I have been a student, and located in Maureens birthplace?

Later in the day things got even better.  As an avid Coventry City supporter I listen to matches live on Sky Blue Player.  Yesterday we beat Gillingham 4-1 .  It isn’t very often that I wake up on Sunday morning when the Sky Blues are top of the league.

The only dampner on this morning is that I have been woken up early once again by leg pain.  I have to start looking after myself a little more.  Those morning routines of Tai Chi and meditation beckon!

 

 

 

Dementia: Organising Our Days

General,

This post has been lifted from a helpful Web Site and edited slightly.  I intend to use it as a guideline for planning our days, as I encourage others to help us review how our journey is progressing.  It is particularly pertinent after a rather challenging week:

Organising Your Day

Remember to make time for yourself, or include the person with dementia in activities that you enjoy – for example, taking a daily walk.

A person with dementia will eventually need a caregiver’s assistance to organize the day. Structured and pleasant activities can often reduce agitation and improve mood. Planning activities for a person with dementia works best when you continually explore, experiment and adjust.

Before making a plan, consider:

  • The person’s likes, dislikes, strengths, abilities and interests
  • How the person used to structure his or her day
  • What times of day the person functions best
  • Ample time for meals, bathing and dressing
  • Regular times for waking up and going to bed (especially helpful if the person with dementia experiences sleep issues or sundowning)

Make sure to allow for flexibility within your daily routine for spontaneous activities.

As dementia progresses, the abilities of a person concerned will change. With creativity, flexibility and problem solving, you’ll be able to adapt your daily routine to support these changes.

Checklist of Daily Activities to Consider

  • Household chores
  • Mealtimes
  • Personal care
  • Creative activities (music, art, crafts)
  • Intellectual (reading, puzzles)
  • Physical
  • Social
  • Spiritual

When thinking about how to organize the day, consider:

  • What activities work best? Which don’t? Why? (Keep in mind that the success of an activity can vary from day-to-day.)
  • Are there times when there is too much going on or too little to do?
  • Are spontaneous activities enjoyable and easily completed?

Don’t be concerned about filling every minute with an activity. The person with dementia needs a balance of activity and rest, and may need more frequent breaks and varied tasks.

Read more: http://www.alz.org/care/dementia-creating-a-plan.asp#ixzz3qh6gPwps

 

Dementia: I Need Feedback!

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One of the things I need in my role as Care Partner  is  feedback on how I am doing.   I get it daily from Maureen, as her presentation is generally a reaction to my performance.  When I  get it right peace and love abounds.   All  sorts of chaos ensues when I get it wrong.  However, Maureen’s feedback is subjective, and professional staff also need to help me review my performance.

When I met with my Admiral Nurse yesterday we agreed that keeping a log of our daily activities would be useful starting point.  This can be combined with the recordings of carers, and placed alongside the observations of our social worker.  When all of this information has been brought together it will provide a platform for planning the way ahead.

As we have been discharged from the Memory Service we need to have a coordinated approach to supporting Maureen.  I need to be able to draw on the expertise of professional staff  to help me reflect on my role: to ensure I remain a supportive, and well informed, Care Partner!

 

 

Dementia: Trigger Points for Trouble

General,

Things have not been easy this week for Maureen or myself.  Her presentation and confusion has been challenging – to put it mildly.  She has also been exceptionally tired and prone to take lots of naps. There is little doubt that there have been triggers for the changes in her presentation.  I am not a believer in theories that suggest random activity from her injured brain.

On Monday evening it soon became clear that a reminder that she had forgotten a birthday of a close family member had caused immediate, and ongoing, distress. It was the only real memory she had of his phone call, and preyed on her mind the following  morning.  As her emotional memory is still intact it is not surprising that she thought ‘she was going mad’ forgetting the birthday of one of her nearest and dearest.

Yesterday, we stumbled into her Aunty Clarice and Maureen was plunged into her murky past.  Some old photographs had been passed on from the belongings of a relative who had deid.  This led to an hour or so of reminiscing.   Skeletons buried in the cupboard  came out into the open once again.  Therefore, it is not surprising that Maureen became distressed about the man in her bed last night.

We are all at the mercy of our memories.  When you have experienced stroke I am not surprised that you might think you are going mad, with things never being the same again.  You certainly don’t need clumsy relatives reminding you of your inability to recall dates that are important to them.  It is also obvious that if you have buried bad memories it is another occasion where it is preferable to let sleeping dogs lie.

It is unfortunate that many only see Maureen when she is in ‘hostess mode’.  Consequently,they have no idea how frightened and confused she can become.  Unless we can find a way of helping some people to become more Dementia Friendly the road ahead for us will continue to be very rocky indeed.

 

 

Dementia: Another Rude Awakening

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It’s 5.30 am in the morning and Maureen woke about an hour ago and got out of bed in a distressed state.  She was very confused about lots of things: particularly about who is in her bed.  I am not going to quote her as I couldn’t possibly recall her words.  Basically she is wondering why strange men get into her bed in the night?  She is talking about the importance of having her own private bedroom.  If people in the Office can’t sort things out, she will go to the Press.

I have had to use all sorts of strategies to try to calm her down.  I am hoping that  she can get back to sleep, although I am concerned about the amount of rest she has needed in the last few days. No such luck for me: I need to reflect on what has gone on, and review my plans for tomorrow..

This morning we are back to Maureen’s fears about men in her bed.  Such concerns often arise and her fear is palpable.  They continue to haunt her when confusion about where she is in her life history surfaces.  Those who are familiar with events in her life understand the origins of her concerns.

I no longer think our plans for tomorrow are safe: Maureen’s presentation this week has fluctuated more than ever.  It is no longer sensible to leave Maureen to her own devices for  more than a short periods of time.  There have been too many instances this week when she has woken up and been totally confused. The sensible option is to postpone my visit to Coventry until we can review Maureen’s current presentation and plan accordingly..

 

A manifesto for people centred care

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This is my third blog of the day and by far the most important. I couldn’t put it any clearer than George’s address to the UK Dementia Congress: people centred care is the only way forward.

georgerook51's avatargeorge rook

This is my speech to the National Voices Assembly yesterday, in the fabulous architectural gem, the Great Hall, Westminster…

Good afternoon.

What a privilege it is to be invited to speak here.

I came to a conference here last year, in the main hall, and was really looking forward to spending in that great arena, with such wonderful architecture…

Well, it’s a lesson. It’s not the architecture or the building that matters, it’s the people inside. It’s the interactions, the networking, the sharing…the people…You

I want to start a revolution. Right here, right now.

The crisis in healthcare and social care, the result of, let’s be clear, political decisions about funding, means we absolutely have to change.

We have an NHS that provides mostly crisis care, interventions when people become acutely ill, and which cannot survive much longer in the form we know.

We have social care that provides ever…

View original post 872 more words

Dementia: Many Hands Make Light Work

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Listening and thinking has to be a priority for a day or two following recent developments. Maureen believed she was back in Nottingham for quite a period of time yesterday evening.  Then this morning following conversations about a trip to Coventry Maureen is wondering: ‘why I brought her here?’  There are also the constant grief related issues about her parents or two children who have passed away.

The simple plan today is to potter around the house and garden.  We will be trying to catch up on one or two outstanding tasks.  This will give us a chance to think about where we go next on this journey.

Fortunately I am well placed in the next few days to share my thinking on a way forward.  At some time today I may well wander around the corner to have a chat with Yvonna our helpful chemist.  Tomorrow I am meeting with Mel, my Admiral Nurse.  Sue our social worker is back on the scene next week and a chat with her is pending.  So many hands should help this Care Partner to continue with good work.

Dementia: Kay is More Than Ok!

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I nearly made a silly mistake on Tuesday when Maureen was having such a difficult day.  As Gail our normal carer was on holiday I decided that a new face in the house wouldn’t help, so I phoned up the Agency and cancelled the call.  Later in the day,when I was on my knees from relentless challenge I asked for the call to be reinstated.

When Kay turned up shortly before 10am  I intercepted her on our drive.  I quickly marked her card on my ‘cunning plan’ for the day.  I explained that things had been difficult on Tuesday, and mood lifting was the order of the day.

Kay played a blinder throughout the morning.  She went along with the ‘lesson plan’ and even moved my aspirations to a higher level.  Within minutes of being here her rapport with Maureen was exceptional.  It helped that she had been here a while ago and she knew how to play Maureen.

Kay had two things in her favour that gave her a head start on other carers.  She is a grandmother and her maturity was a welcome relief for Maureen.  Kay is also a ‘Meggie’, a local, who went to the same Primary School in Cleethorpes as Maureen.  Once I left them too it they got on like a house on fire.

I got it right on two fronts yesterday morning.  Firstly, I went ahead with the call: much needed company after Tuesday!.  Secondly, I stayed around to set the scene, and popped in an out whilst catching up on some domestic tasks.  I have to thank Mel my new Admiral Nurse for the ‘staying here bit’.  As Mel said to me the first time we met: ‘I wouldn’t leave my cat with someone I didn’t know’.  Thanks for that one Mel – it helped to keep me on the straight and narrow yesterday!

Dementia: ‘It’s A Frame Up’

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I am really looking forward to Saturday when I will see mum again after such a long time of not being able to get to Coventry.  I just wonder why it is so simple for me to have an away day every other weekend now, when it has been so difficult in the past?  Some colleagues on Talking Point have raised questions about my, combative style, and my approach to commenting on poor professional support. However, it is reassuring to see that the Local Authority have responded so openly to my concerns, and provided a social worker who is a dementia specialist to ensure that appropriate support is now being put in place.

One of my sister’s phoned the other day to say that my mum is being assessed to see if she needs a walking frame.  I’m not at all surprised as the last time I saw her I realised how difficult it was for her to get around safely.  She is ok if she is holding on to your arm, with a stick in the other hand but is very unsteady on her feet unsupported.  I wonder if her current state is inevitable and that at 94, with vascular dementia taking its toll, we will all need some form of walking aid or another?

I just have a sneaking feeling that mum’s condition has been brought about by her environment.  She is a resident in a small Care Home and is mainly chair bound.  For long periods of the day she sits in her chair staring into the middle of the lounge.  She is mobilised when she needs to go to the toilet or at meal times.  From what I have seen that is her daily routine.

It isn’t rocket science to realise that muscle strength and tone is maintained by exercise.  The mantra of ‘use it or lose it’, is well-known but it seems to have been difficult to adhere to in mum’s Care Home.  It’s probably too late but I would think that my dancing teacher of 50 odd years ago could still have joined me on the floor if others had helped her to keep active.   I think it must be over a year since we entertained her fellow residents with our version of the slow Foxtrot.

It is possible that staff at the Care Home are so stretched,  looking after the personal needs of residents, that they don’t have time for much else.  However, I just wonder if her age and diagnosis of dementia have meant that she has been sold short?  Surely some limited form of exercise that did not take place in the chair could have been part of her daily routine.  Unfortunately, despite the vigilance of my sisters this has not happened.  They tried to nudge the Care Home on lots of issues with little success.  So mum will need to be ‘framed up’ or she will be in a wheelchair next.  Now I wouldn’t want to be the one who tries to persuade her on that one!

Dementia: ‘Sitting Next to Nellie (Chloe)’

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I wouldn’t have got through yesterday unless I had watched Chloe, Maureen’s main carer, in action over the last year or so..  I have looked on in amazement on many an occasions as she has cajoled Maureen in positive directions. There have been times when I have been at the end of my tether with Maureen when Chloe has waltzed in and transformed her into my cooperative loving wife.

There have been many occasions in my working life when I have learned on the job by ‘sitting next to Nellie’.  Fred taught me how to be a Cost of Sales Clerk; Roy how to recondition cylinder blocks, and Bob how to run a Youth Club – I could go on.   In the absence of a structured induction I have had to pick up ‘tricks of our trade’ from fellow employees on many a day.   I have also  witnessed a Master Class in caring  from Chloe in our own home.

I think the sentiments behind Chloe’s approach were acted out last Friday.  Time was running out on her three hour slot as Maureen belatedly agreed to have her hair washed.  Maureen enquired if there was time for further pampering and Chloe replied: ‘there will always be enough time for you Maureen’.

The going got increasingly tough  yesterday as Maureen struggled to get through the day.  On several occasions I bit my tongue, as Maureen’s presentation became even more challenging: with the insults coming thick and fast.  I held on hoping that sleep would lead to ‘Mrs Angry’  becoming a figment of  Maureen’s presentation.

As confusion abounded over bed-time and ‘the clocks being wrong’ I thought of what Chloe would do in the circumstances, and then it came to me.  I left the room, changed my language on my return,  and soldiered on with moving us up the ‘wooden hill’.  Lo and behold it worked, and we were wishing each other ‘night night’ before you could say ‘Jack Robinson’.

Chloe is one of the most unassuming individuals I have ever met.  I am very fortunate that I have had the good fortune to ‘sit and stand next to her’ since Maureen’s stroke.  She would never remind Maureen of her faltering memory and wouldn’t even tell her when it’s her birthday!