Category Archives: General

Dementia: A Rude Awakening

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Maureen was up early yesterday morning and decided to make a sandwich for herself. Seeing her struggle to find what she needed, and satisfy her need for a snack, brought tears to my eyes. It made me realise that I have probably deskilled her by becoming the in-house chef as she has now forgotten how to make a sandwich.  This experience has reminded me of Clarice’s haunting words that ‘once someone with dementia stops doing something, they will never be able to do it again’.

For a while I became very distressed about what appeared to be Maureen’s dwindling functional capacity. At first the scene in the kitchen raised major concerns about the speed that Maureen’s dementia was progressing.  Then I realised that I had unwittingly added to her struggle.  The kitchen could not have been littered with options on every work surface unless there was choice over what to put in her sandwich.  Her problem was in choosing which cheese and margarine to use.

Making sure we are well stocked in provisions is not a priority when dementia is an unwanted intruder in your lives.  The most important thing is to have the basics clearly on display so it is easy to help yourself to a snack.  I need to keep focusing on the basics of KISSS if Maureen is going to have any chance of retaining a semblance of independence.

During the afternoon I sat in our lounge for some time watching Maureen trying to remove a tissue from a pocket in her cardigan.  It took her ages to sort out how to find the tissue as she sat with her cardigan on her lap.  She has a similar problem with zips as she can no longer fathom how to find the fastener and pull the thing up.  Unfortunately, I don’t think tiredness is the issue here it seems likely that fasteners are now a problem.

Maureen had several periods when she was ‘resting her eyes’ yesterday.  I have a feeling that sleep is her response to boredom.  If she has something to do she stays awake but housework seems to be her only time filler at the moment.  This is something of major concern as she often says she is fed up with cleaning up or doing the dishes. 

As the evening drew to a close Maureen went to our bedroom for quite some time.  She appeared to be hunting for clothes, so I left her too it.   Frustration appeared to follow and as she looked tired I encouraged her to go to bed.  Once again I had to remind her where she slept, and she made it clear she didn’t want me in bed beside her.

I slept fairly well in the spare room until Maureen yelled out our around 2 am.  She came out of her bedroom in a hurry, apparently afraid of something.  Once she saw me she seemed to calm down but promptly declined my offer of joining her in the marital bed.  She shut the door firmly and I have not heard her since.

I have already been up a couple of hours this morning.  While I have been decluttering a little more, I have also been having a few thoughts on our situation.  I have some ideas that may help Maureen to retain, or even regain, her functional capacity.  It also strikes me that having someone to talk to about her feelings might help.  As problematic as the former is, the latter is even more difficult.  I can try things, and ditch them if they are not working. Suggesting to Maureen to open up to someone about her feelings is something of a different order: old habits die hard!  

Dementia: Looking Back: Looking Ahead (Week 8)

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It took a while for Maureen to settle down last week after my day trip to London.  Things began to return to normal by the middle of the week, as she began to regain her energy after her ordeal.  In retrospect I think Maureen’s reaction to me leaving her for the day was quite understandable. She objected top being left with carers for 12 hours while I went to visit someone who could have come to see us. Her thoughts about accompanying me to London were way off the mark: the trip would have exhausted her.  However, her questions about me going ton see someone who is able to come to see us was spot on. From now on I will only visit my mum and brother who are no longer able to travel to Cleethorpes.

One issue that needs to be addressed in the coming week is sleep.  Maureen is sleeping a lot of the time.   I’m not sure if this is genuine tiredness or boredom when she doessn’t know how to fill her day.  My problem is the exact opposite as I’m unable to stay asleep for any length of time.  I will raise the sleep issue in various circles in the coming week.

Next week presents  an interesting challenge with Mothers’ Day on the horizon.   I can get off lightly with my own mum. It’s easy for me to argue that she doesn’t want a crowd and leave it to folk in Coventry.

I can take the same position on her 95th birthday, early in March.  I know that my sisters, and daughter, will do her proud on both of these days.  My plan is to visit a few days after her birthday as too many visitors will add to her confusion. Maureen is keen to accompany me on my next visit – it would be lovely for them both if she could make it.

I’m not sure that reminding someone with dementia that it is a special day is always helpful or necessary.  I think letting my 70th birthday pass was a pragmatic decision as far as Maureen was concerned. Reminding her it was my birthday would have been unkind.

As Maureen has not seen her family for a while they will need to be very careful if they are able to make it on Mothers’ Day.  It’s possible she may no longer recognise some of them; remembering their appearance from when they were much younger.  The very same issue that I may well face when I eventually make it to see my mum in a couple of weeks time.

Dementia: Elvis Spoiled My Day

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I suppose it had to happen ‘Elvis’ came back to the Ricoh almost a year after he was sacked and claimed all three points.  Someone needs to tell him that he spoiled my day.

I made up my mind yesterday to put into practice something I’d read in the week.  Several research projects have suggested that gardening has a positive effect for those who have dementia.  My only problem yesterday was that I knew it would be too cold for Maureen to join me outside, or for me to stay  in the garden for very long.  So throughout the morning I popped outside for ten minutes at a time.  Maureen stayed in the warm, supervising my efforts from the patio doors in the dining room.

As I pottered she watched my efforts as I improved the prospect from our dining room. After several bursts of activity I introduced some colour, and order into what had become a tired scene.

We took our mid-morning break and I sat back with some satisfaction looking at how four additional polyanthus, along with some tidying up, had added a splash of colour to what had become a very tired scene.

After a warming lunch I sat back to my usual Saturday afternoon.  The Sky Blues were unchanged from their last match a 6-0 victory over Bury, and I anticipated another high scoring win against Fleetwood.  Elvis spoiled all that as his team ran out 2-1 winners.  I know it is rather silly but my mood always dips when we lose.  It could have been worse as my bet would have already been down had the bookies accepted my wager that not only would we win the league but we would be unbeaten for the rest of the season.  Thankfully my quid at 20-1 is still on.  I think the odds would have been even better after the way they played yesterday!

By the way for the uninitiated ‘Elvis’ is Steven Pressley the dastardly manager of Fleetwood Town. Just as Coventry City missed an opportunity to stay in touch with the leaders of the division I also failed to make the best of things.  Rather than slipping into despair about the fortunes of my team I could have turned it into an opportunity.   Elvis could have been artist of the night and Maureen would have waxed lyrical.  My disappointment with the footie meant that I failed to carry out my duties as the resident  D J.  Instead ‘we took an early bath’, as they say in the game, and were in bed by 9 pm.

I wonder if Maureen would have sang along to this one with some gusto?

 

Dementia: Meditation Not Medication

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Meditation design elements vector graphics 01

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:’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’.