Category Archives: General

Dementia: Still Trigger Happy

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The wedding ring is now safely (I hope) back on Maureen’s finger.  We collected the resized ring from the jewellers yesterday.  Maureen is still not sure it is the correct size and we will need to keep it under review so she doesn’t take it off and put it in a safe place; where hopefully her engagement ring resides.

I am hoping that wearing a wedding ring will remind Maureen that she is my wife.  It may have helped last night as we shared the marital bed until I got up at 5.30 am.  I have already pulled down the continental quilt in the spare room so it becomes that rather than ‘my bedroom’.  It is possible that my ideas around the Wedding Album may begin over the weekend, it depends how things pan out.

I had a positive meeting with Mel my Admiral Nurse yesterday.  We are not completely comfortable with the ‘going with the flow’ approach to dementia.  We favour a ‘trigger-happy approach’ by trying to look behind aspects of presentation.  So we see my taking to the spare room only as a last resort when it is necessary to avert distress.

There is little doubt that Maureen is becoming increasingly confused. Yesterday Chloe, our longest serving carer, said she frequently asked her if she knew anything of her whereabouts.  Maureen also mentioned to me that several carers had been assisting her during the course of the morning.  The apparent progression of Maureen’s dementia means that I need to keep the 12 Helpful Hints from yesterday’s blog to the forefront of my mind as I attempt to minimise distress and try to help her remember who I am.

 

Dementia: Beautiful Song From A Care Partner

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Kate Swaffer and Susan Macaulay continue to help me in my role as  Care Partner  by sharing their experiences of dementia and making helpful suggestions.  This morning they have brought this beautiful song to my attention through a post on LinkedIn and I wanted to share it with others:

 

Dementia: Carpe Diem

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Procrastination is the thief of time so I wasted no time yesterday in my plan   To Take The Bull By The Horns.  An early morning phone call to my G P led to a consultation at 11 am to discuss my latest concerns with Maureen’s presentation. Dr Munjal was extremely supportive acknowledging the difficulties of being a Care Partner as dementia progresses.  He urged caution in confronting Maureen about her reluctance to take medication or recognising who I am.  Dr Munjal knows Maureen well: it is always helpful to discuss my concerns with him. 

I also manged to speak Mel, my Admiral Nurse, before 10 am and arranged to meet her on Friday morning.  She has hinted that Life Story work may be a positive way forward and I have just scanned Dementia UK’s approach to such an initiative.  I am optimistic that we may be able to develop something that helps Maureen to remember key events in her life: particularly our wedding .  There is an opportunity to open this door today when we collect her wedding ring from the jewellers.  I’m hoping that the reduction in size will help to keep it on her finger and that her engagement ring will eventually turn up from the safe place where she has placed it.

Once the ring is back on Maureen’s finger we might even try to sort out our Wedding Album: even place some of the duplicate photos strategically around the house.  The only problem is that may make recognition even more problematic as we have both aged a little since our ‘Happy Day’ (pictured right). Then of course we have the Wedding Video to watch if if reminiscing seesm to help. .

The 3.30 alarm call came on time this morning as Maureen yelled out ‘Paul’.  I found her downstairs concerned that her car was about to depart and leave her alone in the house.  My attempts to placate her fell on stony ground with all sorts of abuse aimed in my direction.  A cup of tea an hour later seems to have hit the spot and I’m hoping she will sleep as Mrs Dementia and wake as Mrs Collins.  

Postscript: I’m optimistic my wife is back: Maureen has just woken moaning ‘she won’t go swimming today after all’ (the mind boggles) and just to help her focus I have gone straight into Tea Boy mode and topped her mug up with further supplies.  

 

Dementia: Time To Take The Bull By The Horns

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We are at the mid-point of Dementia Awareness Week and it seems an appropriate time to take the bull by the horns and deal with two pressing issues.  Firstly, I need to encourage visitors to understand the condition a little more and help them become more dementia friendly.  Secondly, Maureen and I are both aware that her confusion about who I am is becoming more prevalent and needs to addressed

I made our day very busy yesterday by encouraging Maureen’s brother and his wife to come to Cleethorpes.  That resulted in a challenging afternoon and evening with both of us being totally exhausted by the time they went back to spend the night with Clarice, Maureen’s Aunty.  We went to bed together around 10 pm last night both worn out by the presence of three other people with their resultant constant conversation.  

Around 3.30 am Maureen woke up and said she ‘didn’t know who I was’ and wanted me to leave the marital bed.   I retired to the spare room with a throw away comment that ‘this was happening more frequently’.  Maureen replied that she ‘didn’t understand why this was happening’ and suggested that we needed someone to help us on this front.

I will approach taking the bull by the horns with caution – compassionate confrontation comes to mind.  It is time to discuss the best way forward with professional staff and fellow Care Partners: doing nothing is no longer an option.


 

Dementia: Pleasure And Pain

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It would be wrong to say that all is sweetness and light in our household.  My experiences yesterday paint a stark picture of how life can be on most days: the pleasure and pain with dementia the elephant in the room.  

I decided to stay around yesterday morning and not hoot-foot it to the Leisure Centre when the carer was in situ.  Chloe assumed the role of ‘cleaning lady’ and Maureen and I pottered in the garden as she made our house a little more presentable.

I felt tired in the afternoon and decided to seek a nap on the bed.  Maureen continued her quest for a walk by opening and closing the front door as I tried to get some shut-eye: so my siesta came to an abrupt end as I feared Maureen would wander off.  Maureen eventually got her way and within half an hour we had a lovely experience as we began our walk in search of blue bells in nearby Weelsby Woods.

We came across a friendly group of people as we made it to the top of a steep incline just as we were about to enter the woods.  Following a brief greeting we chatted to them for half an hour or so.  After a while we found out they were a group of Missionaries from the Church of Jesusu Christ Latter-Day Saints.

Maureen was particularly taken by Lesly a young woman from Bolivia (pictured right) who she chatted to for quite some time. Lesly was lovely with Maureen and very keen to keep in touch.  I hope it is not the last we hear from this lovely group of young people but Maureen was concerned that we must have biscuits in stock if they took up out invitation to visit our home.

When Maureen discovered that some of the group were French speaking she sang  them one her favourites from South Pacific:

We didn’t find many blue belles on our walk but what we did find more than compensated for my disappointment at not being able to catch up on some sleep.  The pleasure of seeing Maureen in her element in the woods soon turned to pain at ten ‘o’ clock as we went to bed.  Once again Maureen made it clear that she wanted the bed to herself as she didn’t want to be too hot. She continued on a similar them at 4 ‘o’clock this morning as she didn’t want a stranger in her bed as she ‘didn’t know who I was’.  I’m not finding any of this easy and need to consider whether the best way forward is acceptance or some form of intervention.  Any reader of this Blog would realise that my predisposition towards neuroplasticity is likely to mean that I’m not just going to lie down and accept that I belong in the spare room but on the other hand I need to seek to minimise distress.  As I have drafted this post I have just received comments from Gill that give me real food for thought.

 

Dementia:Who Am I?

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One of my most difficult tasks as Maureen’s Care Partner is working out who she thinks I am or alternatively who I am not at ceratin times of the day or night.  We had great fun for most of yesterday with an early morning stroll around a local Car Boot Sale to set us off on sound footing.  In the afternoon Maureen sang along beautifully to Anne Murray and many others as I kept the deck well supplied with vinyl.  We managed another walk early evening checking on the activities at nearby Holiday Centres.

On our return I scanned YouTube for an episode of Dinner Ladies and we both enjoyed seeing Victoria Wood and her fellow workers at their best.  I thought we had spent the day together as husband and wife until about 9 pm when Maureen asked me ‘to take her home to her husband’.  I was taken aback by her request and explained in a low key way that she was already at home.  Unfortunately, none of my attempts to help her grasp my reality worked until sleep rescued us both from a tricky situation.

Maureen woke after about half an hour dozing on the sofa and decided to go to bed.  I managed to sleep beside her and we had a relatively peaceful night with a couple of interruptions.  Around 4 am she muttered something about ‘making chips’ and a little later on was pleased with my reassurance that she didn’t need to ‘get ready for school’.

I decided to get up around 5 am and have a shower to try to ease discomfort in my shoulder and hips. As I walked across the landing after showering Maureen appeared looking startled and then saying ‘thank goodness it’s you’.  I quickly slipped into my ‘Tea Boy’ role to help her snuggle back down in the warmth of the bed.

As Paul Martin my counsellor often reminds me my main focus as a Care Partner is to seek to minimise distress.  It’s safe to be Maureen’s DJ or Tea Boy: it’s when I’m trying to be her husband that things become hairy.  However, there is one thing that we can both be today is supporters of the Grimsby Town who are at Wembley today in the play-offs.  We can both forget our respective loyalties to Coventry City and Nottingham Forest and support the ‘Mighty Mariners’ efforts to get back into the Football League.  The outcome of the match is as uncertain as whom Maureen thinks will be sitting beside her as we follow the fortunes of ‘Town’ this afternoon.

 

Dementia: ‘I Don’t Know What It Is’

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Yesterday afternoon Pat a neighbour from across the road popped in to see how Maureen was doing.  After she had gone Maureen told to me that Pat had been ill and now had dementia but ‘she didn’t know what that was’.  She then asked me if I knew what dementia was and I gave a brief explanation.  She then said ‘you think I’ve got it don’t you?’.  I said I only knew what the medical people had said and Maureen made it clear that she had no recollection of their diagnosis of her condition.

Maureen seemed pleased with Pat’s visit and told her to pop in or call on us whenever she needed any help.  She didn’t seem spooked with the dementia issue and went on to comment on how fit and well she felt at the moment.  Maureen’s positive attitude on good days is impressive.  However, when the going gets tough I often  struggle to deal with the complexities of her presentation so I was very pleased yesterday to receive these helpful suggestions from Susan Macaulay:

‘One of the most useful things I’ve learned on this dementia journey is that when people who live with dementia exhibit responsive behaviours which appear angry and/or aggressive there’s usually a perfectly reasonable and rational explanation for it – from their point of view.

Such behaviour is not random (although it may appear to be), it’s not willful (although it may appear to be), and it’s not their fault (although it may appear to be).

“Problematic” responsive behaviour is most often the result of:

  • A physical issue they are unable to pinpoint and/or articulate (e.g. pain, incontinence issue)
  • A “trigger” or triggers in the environment (e.g. noise, temperature, activity)
  • How I or someone else has interacted with them

The obvious way to stop anger and aggression is to address the root cause:

  • Find and address the physical issue
  • Identify and remove the environmental trigger(s)
  • Stop blaming them and start taking responsibility for causing responsive behaviours

In the third instance, dementia care expert Teepa Snow suggests learning, practicing and using these six simple phrases to acknowledge the person, accept responsibility, diffuse the situation, restore positive energy and create the opportunity for healing.

  • “I’m sorry I was trying to help.”
  • “I’m sorry I made you angry.”
  • “I’m sorry I embarrassed you.”
  • “I’m sorry I made you feel stupid.”
  • “I’m sorry I didn’t mean to, but I treated you like a child.”
  • “I’m sorry, this is really hard.”

Meaning what you say when you say these phrases is important. Putting yourself in their shoes is helpful. Ask yourself these 20 questions to imagine what they might be feeling.

You can experience the power of the statements in the video below in which Teepa plays the part of a care partner, and the woman in the light blue top plays the part of a person living with dementia (see disclaimer)’.

 

Dementia: Short-Term Memory Loss?

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I managed to step inside Maureen’s world yesterday and grasp another aspect of her reality.  Mo, a neighbour, had tried to help Maureen when she found her in the street looking for our house. Her attempts to encourage Maureen to understand that she is no longer safe to be out alone resulted in hostility.  After she left Maureen explained to me that other people didn’t understand that her memory loss had been ‘short-term’.  For the first time the penny dropped with me on Maureen’s explanation of the consequences of stroke: ‘that she lost her memory once’.

It was fortunate that we were in good humour from walking in the early morning sunshine on the Prom before Mo’s helped Maureen to find her way home.  I used our happy demeanour from our early morning stroll to laugh off Mo’s attempt to put Maureen in her place about ‘being naughty and wandering off’.  Laughter has been the furthest thing from my mind at 4.30 am this morning as I have tried to distract Maureen and not absorb her hostility towards me.

As we enjoyed our day yesterday with several walks I grasped that Maureen was often unclear how I fitted into her life.  She frequently told me about ‘her Paul’ and must have asked me the same question about my son half a dozen times.  Around 8.30 pm she became agitated that she couldn’t remember or see any wedding photographs around the house.  I didn’t remind her that she had torn one of them up and moved others out of view.

This morning Maureen’s confusion is rampant: utterly bewildered about how her daughter let her marry a guy she didn’t know.  I have tried everything I know to put her mind at rest and eventually withdrawn myself from the firing line.  ‘Mrs Dementia’ is no fun to be with this morning she clearly isn’t happy with arranged marriages and is threatening divorce.

I’m hoping that further sleep will lead to a change in Maureen’s presentation with ‘Mrs Dementia’ taking time off.   Chloe today’s carer will be here at 10am and I will be off shortly after her arrival for an appointment with my physio to discuss the way forward with the tear in my rotator cuff.  When I return I must stick to the mantra of not absorbing and using distraction to minimise distress.  

It would be really nice if ‘Mrs Dementia’ took a short-term break over the weekend if not I will need to be on the phone to the Care Agency for additional support.  I realise I am very fortunate to be supported by a team of professional staff who recognise the need for flexibility in our Care Plan: they will fully understand that yesterday I was able to cancel a carer sit but on Saturday and Sunday I might need additional support.  As I have said before the mantra in North East Lincolnshire is: ‘look after your carers’.

Dementia: Admiral Nursing To The Rescue Again!

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Yet another disturbed night has led me to realise it is time to back off on several fronts.  I had a good chat with Sandra one of the Support Workers in the Admiral Nurses office yesterday and began to see that ‘jaw jaw is creating war war’: challenging Maureen about sleeping on the sofa only leads to distress for both of us  It is time to accept that trying to persuade Maureen of the errors of her ways is naive: I have to accept her reality.  Bob DeMarco from the Alzheimer’s Reading Room talks the need to take a step to the left and enter the world of the person who has dementia.

I followed Sandra’s last night and didn’t object to Maureen sleeping on the sofa.  I heard her moving around at 1pm and found her worried about intruders.  She looked a fearsome sight armed with a large plastic spoon and draped in a blanked: no wonder she saw the scoundrels off!  I accepted my reprimand for going to bed and leaving her to keep us safe.  After a while Maureen decided to go to bed and I eventually chanced my arm and lay alongside her for a pleasant half hour.  Unfortunately my thinking-hat was switched on and I hope blogging might help me to clear my mind.

I’m going to cancel this morning’s carer sit and have a chat with the Admiral Nursing staff about reviewing future arrangements on Tuesday and Thursday mornings.  I think it is possible that the trigger for Maureen’s current presentation is the additional carer sits fuelling her accusations that  I’m arranging baby-sitters so can I go out and have a good time.

There is little doubt that Maureen rose the occasion during our day trip to Coventry last week.  Another similar opportunity beckons this weekend when we could venture up North rather than receiving a visit from her younger son and his family.  I think a change of scenery coupled with backing off by taking a ‘step to the left’ might help on the next stage of this journey.

 

Dementia: A Quick Step Out Of Trouble

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I had to step into my ‘Tea Boy’ mode this morning to get out of a hole I was digging for myself.  Maureen changed the rules of  ‘Musical Beds’   last night by refusing to move from the sofa. This meant that I have had little sleep with one ear tuned to the Baby Monitor all night, listening to her every move, and frequently popping downstairs to check that she is safe. My ‘hole-digging’ started around 4 am when I tried to open discussions about it being sensible to sleep in a bed.

I often forget that dementia means logic, rational thought, and empathy are early casualties of the condition.  My attempts to assert that it is normal to sleep in bed fell on fallow ground with threats to leave if I didn’t want Maureen to live here anymore.  Early morning tea has turned the tide on what became a fruitless discussion with accusations that I was telling Maureen what to do: even treating her like a child.  I simply have to find another way of prising her off the sofa at night and encouraging her to sleep in bed: suggestions as ‘comments’ please – no closing date or prize for a solution only my gratitude.

The good news from yesterday is that Charlotte our new carer made a positive start to becoming part of the team.  She has a lovely nature and Maureen seemed to like our new ‘Shopper Lady’.  I realise it is early days and one false step from myself or Charlotte can easily lead to all sorts of problems in the future.

We didn’t make it to see our friends from the Bowls Club last night but I have flagged up the possibility of catching up on some familiar faces from Social Dancing this morning.  I have already been demonstrating that I still have a lock-step in my quick step repertoire so with luck we’ll be ‘tripping the light fantastic’ at Clee Church Hall before noon.