Dementia: Meditation Not Medication

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I don’t need any persuasion of the benefits of meditation.  Some years ago I began to show an interest in Buddhism, and began attending local classes in meditation.  I have had several teachers in my sporadic attendance, they have all  helped me to  grasp the simplicity of Buddhism.

When Jendrik, my current teacher, heard that I was unable to attend classes, because of Maureen’s condition, he popped round to see me.  Ed one of the longest members of the Grimsby Group has also met up for a chat on several occasions: we are getting together again this morning.

The Buddhist message, from both of my dear friends, has been to use this challenging time as an opportunity to address ‘self-cherishing’ and give ‘unconditional love’.  It therefore comes as no surprise to me that Meditation is now being seen as an important component of any strategy to deal with the impact of dementia.

Maureen has always been a little sceptical of Buddhism.  Therefore, I need to tread very carefully if meditation is to become part of both of our lives.  However, I’m optimistic that with patience she will see that meditation will become as beneficial to our lives as music. 

Any reader of this blog would know by now that we are generally reluctant to see medication as a panacea for health issues.  We believe in taking responsibility for our well-being with a healthy diet and exercise.

When we are unwell we look into our symptoms and try to find a solution without troubling our G P.  If natural cures don’t work we seek an appointment and take professional advice on the best way forward.  Even then we might try to sort things out ourselves once our ‘medicine man’ has made a diagnosis and prescribed his solution.

My Admiral Nurse has set me thinking about changes in Maureen’s presentation.  Her point that triggers are behind Maureen’s presentation has resonance with how I see the world.  In short I would put Maureen’s behaviour down to cause and effect: she is frightened about being abandoned and is searching for a life boat as she fears the ship is about to go down.

Working with the Home Treatment Team feels like with are with kindred spirits as we  seek calmer waters: they do not rely on the medical model .  They are aware of research that urges caution with an approach that relies on antidepressants and antipsychotic medication.  There is a strong body of opinion that these types of medication should not be used where dementia is a factor.  Thank goodness we are in that camp and not  fighting a battle to resist the introduction of antidepressants.

On Wednesday the Mental Health Nurse suggested that Maureen needed some help with regaining her confidence.  That has been my opinion for some time and  I do my best on that front day after day.  However, it is possible that a different approach or style could reap further dividends.  How lovely it would be to see Maureen ‘come out’ from behind the sofa and regain the vitality that has gone missing since stroke: with us all singing from the same hymn sheet that is now a distinct possibility.

Chloe our regular carer returns from her holiday today.  Maureen can’t wait to see ‘her hairdresser’ this morning: eagerly anticipating a makeover.  When I come home after seeing Ed at lunch-time I fully expect to see a transformation; with Maureen sitting chatting to Chloe rather than ‘Mrs Dementia’ being in situ.

If all goes to plan a Support Worker from the Home Treatment Team will be here on Sunday morning.  With luck she will persuade Maureen to go on a much needed clothes shopping expedition.  My late afternoon conversation with the HTT yesterday helped me to understand how significant their intervention can become.  How refreshing to have skilled experienced guides to help us find our way on this hazardous journey.

This post was finalised today 8th April 2016

Dementia: Saturday’s Sprinkle of Gratitude (Week 3)

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There is so much to be grateful over the last seven days: possibly one of the most challenging weeks for a while.

I was so grateful for 256256 the emergency number of Adult Social Care on Sunday night.  I was at the end of my tether trying to settle Maureen after my day trip to London when they responded to my call to for help with support.  Just knowing that help was on the way was such a bonus in my hour of need.

I was so grateful that Simon the owner of the local chippie cooked haddock to Maureen’s special instruction on Tuesday, when I was too tired to be the in-house chef.  His lightly battered fish with chips cooked to perfection hit the spot for both of us.

I’m so grateful that I have been able to have several short walks this week.  Maureen is so kind to be prepared to be left alone while I pop out to local shops to stock up on provisions, and recharge my batteries.

I’m so grateful to Bob Marco at Alzheimer’s Reading Room for  helping me try to make sense of ‘Maureen’s Dementia World’.  His Site has encouraged me not to take her words literally and try to understand the sentiments behind her presentation.  I would have no chance of making sense of her recurring fears, very early this morning, about having no clothes for school without Bob sharing his experiences of working with Dotty.

I’m so grateful to our carers for helping me to cope with a very challenging week.  I’m hoping to get Chloe, Gail and Sue public recognition for their work through a competition organised by Accord: a community membership body for North East Lincolnshire that lets all members have a say in how NHS and adult social care money is spent.

I sincerely hope our carers’ are short-listed and go on to receive an award.  They have provided sound support to us over the last year: helping Maureen to retain her independence, and me to become a supportive Care Partner.  I’m hoping that my nomination shows them how much we appreciate their hard work.

I’m very grateful to Bob Marley for his reggae music.  Hearing Maureen accompany Bob last night was heartening. When she asked me to dance with her to ‘Stir It Up’ in memory of Denise, her daughter, it was the end to a perfect vinyl session.  Check it out below and think of us moving smoothly around our dining room.

Dementia: Four Significant Questions

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Sue our social worker popped in for an hour yesterday morning for one of her regular calls. She has a lovely way with Maureen and I left them chatting while I carried on with one or two things around the house.  Her visit clearly worried Maureen as she wondered ‘why that woman was asking how she folded sheets?  Maureen had concerns that she was trying to establish if we still needed Chloe, our carer, and if she could sort out the sheets by herself.  I did my best to reassure her that Sue’s motives were sound but I doubt I have eased her concerns about ‘all these people who are taking over our home’.

When I returned from a short shopping late afternoon  Maureen said she was going back to bed as 5 ‘o’clock was too early to get up.  She then asked me if I was going to join her in bed.   I said I would be with her in a few minutes after tidying up the kitchen, knowing she would be sound asleep within minutes.

When I turned if for the night around 10.30 Maureen stirred and asked me her final question of the day.  She wanted to know if she had upset some people and that was why they had stopped phoning or coming to see her.  Maureen also wondered if they knew she had been ill.  I tried to reassure by telling her how busy folk were these days with work and their families.

Maureen’s intellect shines through day after day.  Her four questions were all valid. When she has energy you wouldn’t know that stroke has caused brain damage:  when she is tired it’s a different story.

This song from Johnny Nash is perhaps the best way to close this post:

Dementia: Dump the Risky Drugs

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Having tweeted two articles on this front today I have decided to reblog a post of mine from August 2015

It's My Time Now's avatarMemory Issues

More on the dangers on using risky drugs for dementia from an article by Irving Kirsch in New Scientist. I make no apologies for continuing to use Irving as a resource on this Blog.  I am pretty certain if I had not read his book: The Emperors New Drug I would have remained on mirtazapine for life.

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Dementia:’Get A Man In’

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On Wednesday Maureen suggested ‘getting a man in’ and I thought welcome to being a septuagenarian.  I feared she was being insensitive and could have given me a couple more days getting used to my new status.  With trepidation I wandered down the road and told Kev of Maureen’s request and he agreed to help out.

Kev arrived an hour earlier than expected and soon sorted out what was needed.  In his forties he had the dexterity to see things in a different way.  He was able to get into positons that I can now only dream of.  He didn’t need to be helped off the floor after his initial inspection.  He didn’t yell out in pain trying to see where things were going wrong.

Two hours later and there was satisfaction all round.  The leak under the sink had been solved, a new tap fitted we were no longer sloshing around in pools of water in the kitchen.  He also did a couple of other small jobs while he was here.

Maureen often jokes she’s not‘the full shilling’.  She certainly helped us get our money’s worth on that one as Kev is always reasonable,and saved her middle-aged husband a lot of pain into the bargain.

Dementia:Staying Focused

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As Maureen’s condition progresses it is time to make some hard choices to maximise my chances of remaining a supportive Care Partner.   I need to make significant changes in how I spend my time if I’m to cope as dementia tries to up its game.  My counter attack needs to include the following:

  • Using my Blog to communicate with professional staff and family
  • Visiting  family members who are unable to travel
  • Establishing our bedroom as a place of refuge for Maureen..
  • Reviewing my involvement in Distance Leaning Courses
  • Using the Alzheimer’s Reading Room as my reference point for on line support
  • Making changes to our diet in line with recent research
  • Adding supplements to our diet, including magnesium
  • Building meditation, and mindfulness, into our lives
  • Integrating walking into our daily routines

Maureen needs me by her side at the moment.  Therefore, visits, text messages, and phone calls, to those who can travel here, are luxuries that I can no longer afford.

It is reassuring that our support teams continue to offer excellent advice and guidance as we try to find our way on this hazardous journey.

Dementia: Learning From An Old Hand

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I have always seen Maureen’s Aunty Clarice as an excellent reference point in the steep learning curve that I have needed to traverse in becoming a Care Partner.  She is a veteran in the field, as her late husband had Alzheimer’s for approaching 20 years. Her other asset is that she has known, and been close to, Maureen for a very long time.

Clarice was clearly taken aback by Maureen’s demeanour yesterday.  I think she perhaps saw breakfast/lunch in bed after noon as decadence.  When she joined us in the bedroom she was taken aback by Maureen continually asking her the same questions.  Then she was disappointed Maureen’s reluctance to join us downstairs.

It didn’t surprise me that Clarice was shocked by Maureen’s presentation.  Only those who see her day after day have any idea of the marked decline in her condition.  Tiredness seems to be a regular feature of her presentation, and that poses a dilemma for me as a Care Partner.

There is a commonly held view to ‘let sleeping dogs lie’.  That has been my approach in the last few days: to let Maureen recover from her marathon on Sunday.  The risk factor in that strategy is that whilst rest may well be needed; functional capacity may well be lost.  Unless Maureen keeps up her daily routines she will forget how to carry them out. This may well leave her with limited capacity to do anything other than clean the work surfaces or put away the pots and pans.

Even in her grief Clarice continues to provide excellent support and advice as I try to support Maureen.  I have learned so much by watching her in action and chatting over her journey since Alzheimer’s entered her household. She still feels guilty about Dennis ending his life in a Care Home.  I hope my words of comfort helped this extremely generous woman as much as she continues to support us both.

 

Dementia: ‘Party Pooper’

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Maureen is still reeling from Sunday.  It’s after two in the afternoon and she’s still in bed asleep.  I’m not at all surprised after her 14 hour shift on Sunday.

Her Aunty Clarice has popped in for a short while.  They chatted as Maureen ate her breakfast/ lunch at noon.  Maureen was reluctant to come downstairs afterwards feeling that Clarice had outstayed her welcome.

This middle-aged husband is keeping a vigil by occasionally popping upstairs to check his wife is ok.  I have now taken all cards down as Sleeping Beauty will have forgotten I’m 70 today the next time she wakes up.  It’s likely more breakfast will be needed before very long:  just another day in ‘Maureen’s Dementia World’.

Dementia: ‘Life Begins At 70’

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Well I’ve made it: today I enter my 8th decade.  There’s no party or Cruise to celebrate my 70th birthday. Celebrations have already begun with Maureen singing ‘Happy Birthday’ around 5 am. Her card has been on display for over a week, as we couldn’t find Valentine’s Day Cards amongst our keepsakes.  I have always said ‘her that her presence is my present’, and today is no different.

We are going to have special food today: home-made soups.  As the in-house chef, and Birthday Boy, something special will be on the menu today: with a new version of Golden Vegetable Soup for lunch, and Birthday Dhal for the evening meal.  So it’s going to be a ‘Souper Birthday’,

I remember one of my bosses saying to me that it was all down-hill after 40.  Fortunately, I have never followed his jaundiced approach to becoming middle-aged.  My current focus on life has been sharpened by Maureen’s condition.  What I have to grasp is how to enter her ‘Dementia World’.  Once I am comfortable in her world, I’m sure we will continue to enjoy our lives together: despite my advancing years.  One thing I can be sure of is I would never have caught Des Walker, and I will never catch up Maureen.  That young lady of mine isn’t that far off entering her 9th decade!

There could only ever be one song for today:

I hope all readers of this Blog have someone they can sing it to.

Dementai: Use Shank’s Pony

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Being a Care Partner for someone with dementia is a steep learning curve.  Dementia is an unrelenting teacher – get it wrong and  it’s unlikely you will get off with lines or detention.  I got it wrong yesterday, and paid the price.

My first mistake was to travel on Sunday.  On the way down to London Network Rail apologised that overnight work was causing us to run late.  Things were even worse on my return journey as no trains were going to Doncaster from Kings Cross because of problems with overhead cables.  Nipping across to St Pancrass added a couple of hours to my journey but at least I got home by eleven.

As soon as I walked in I sensed that little had changed since my departure.  Mrs Dementia looked sternly at me, and launched into a verbal tirade as soon as Sue had clocked off. There’s  little point in listing the accusations or her command of Anglo Saxon. Unfortunately, I couldn’t take her back to ‘where she lived’ as we were already there.

With the battle showing no sign of cooling down I summoned assistance from Rapid Response.  A little like a visit to the dentist the pain had eased when they arrived following trailing Maureen on a walk .  Fortunately, the stars were out at one in the morning, and the pavements were safe to walk on.

Later this morning and Mrs Dementia is in full flow once again.  Maureen is time travelling and confusing me with her ex-husband.  She is now repeating to  me,all those things she must have said to him at the dreadful time in her life.

Thankfully, Chloe our carer is here now.  We have just had a good chat about how rapidly Maureen’s condition is progressing.  We are so fortunate with the quality of our carers, and as always Chloe has helped me to put matters into perspective.

It’s a lovely sunny morning today in Cleethorpes.  I’m off shortly on ‘Shank’s Pony’: even with my hips it has to be a more reliable form of transport than British Rail!