Dementia: ‘Houston We Have A Problem’

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I can’t remember who said it in the missions to get to the moon but we have a problem in Cleethorpes this morning.  In fact we have three problems Maureen’s current presentation, my well-being and a shortage of personnel at ‘Mission Control’.

At 2pm Maureen became concerned about her car again: she is fixated that someone else is using it and not taking her out when they are enjoying the luxury of her motor.  She went off on her own hunting for children who had been playing in her car yesterday and returned half an hour later having forgotten why she had gone out for a walk.  I’m extremely grateful to Susan Macaulay for helping me to reconsider my position on ‘wandering’.  Sue our social worker has also gave me live telephone support on this matter yesterday.  I have no intention of locking Maureen in and will support her right to go for a walk on her own whenever I feel she is in the right mode to be safe.

A secondary problem is that I am racked with pain this morning and needed a hot shower to ease the pain in my shoulders and legs.   The further problem is that Mission Control is depleted this morning as two key personnel have gone AWOL today (not really).

I have now arrived at a point in this Blog where I started yesterday when I pressed the wrong button and released an early draft: I’m spoiled for choice with the level of support that is available to me as a Care Partner this morning.  Sue our social worker never works on Wednesday’s and Mel my Admiral Nurse is on a course in London.  Despite the unavailability of such key personnel I still have a number of professional staff I can turn to if  to chat over my next move.

Just by chance I have an appointment with Paul Martin my counsellor this morning and I will arrange to see Dr Munjal while I’m at Clee Medical Centre.  I need to chat through with them my ‘cunning plan’ to deal with Maureen’s car , wanting to go home and being reluctant to take medication..  If they had not been available I know I could have chatted to staff at the Home Treatment Team or walked a few streets away to be with with Yvonna the chemist at Lloyds.  I could also contact Angie a Carers’ Support Worker and take up an offer of meeting her to discuss how things are going.

When Maureen and I decided to move to Cleethorpes lots of people questioned our sanity.  In retrospect it may well have been a reckless decision to move away from all immediate family who all live over a 100 miles away.  What they, and we, didn’t realise at the time was the range of services here is exemplary and I would be surprised if any Care Partner enjoys the options for support that I have at my disposal this morning.  I had hoped to praise the set-up to support carers here through the channels of the  Academy of NHS Fabulous Stuff and the  Huffington Post  but I fear that may not happen as Maureen doesn’t want me out of her sight at the moment.

I have a number of ideas on how to try to resolve Maureen’s fixation on her car, wanting to go home and being deserted.  It is fortunate that we have a slow puncture in the front near side tyre.  I bet those wheel nuts will be so tight it will not be possible to put the spare on this morning.  How convenient the car can be immobilised for a few days.

Bob Marco asserts that accepting the ’emotional glue’ is a prerequisite to becoming a supportive Care Partner.  He argues that once you accept this sticky solution life returns for those who are on this unforgiving journey: simple solutions all round then!

Today’s Tasks

  • Immobilise Maureen’s car
  • Seek advice on Maureen’s presentation
  • Make dental appointments
  • Encourage Maureen and carer to empty the ironing basket
  • Continue de-cluttering the house
  • Refer family members to Blog for an update
  • Continue to explore moving home with Maureen
  • Potter in the garden
  • Fast during the day to address pain in limbs

Footnote:  I will forward this Blog to the Academy of Fabulous NHS Stuff and Huffington Post and hope  they spread the word of excellent support for carers in Cleethorpes.

 

Dementia: Spoiled For Choice For Support In Cleethorpes

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This post is being revised for publication in the morning.  I mistakenly hit the publish button while I was drafting.  Things are very challenging at the moment and I’m hoping a cup of tea calms things down!

Dementia: Creating Purpose and Routine

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It is never easy as a Care Partner to know if your approach is helping your loved one. However it doesn’t take you long to realise when you have made a mistake as there is no quarter offered by ‘Mrs Dementia’: she soon lets you have it with both barrels when you get it wrong.

I have made some progress in the last couple of days in helping Maureen find purpose in her life.  On Sunday I kidded her into going to Nottingham to support her brother and try to lift his mood.  Maureen warmed to this theme as she is a natural nurturer and I reminded her off her good works throughout yesterday whenever the opportunity arose.

Yesterday I encouraged her to follow the tradition of Monday is wash day and change our bed linen.  When I returned from a shopping expedition there was a line full of washing and Maureen had been spruced up in the shower.  Then I dropped a clanger asking if fresh linen had been put on the bed.   I soon got my come-uppance as Maureen refused to help our carer follow my hints about further tasks.  As Chloe said ‘she doesn’t like you telling us what to do’.  Later in the day I paid the price for another silly mistake.

Mike my neighbour asked if he could put his car alongside ‘Maureen’s’ on the drive.  When she awoke from her afternoon nap she was very distressed about our drive doubling as a car park for Mike’s car; particularly as it obscured the vision of her motor.  It also gave her a further opportunity to become frightened that strangers were always visiting this place.  I hastily asked Mike to remove the offending vehicle and return ours to its rightful place in the middle of our drive  As you will see from the photo, our car, Maureen’s beloved Space Star is now home alone in its rightful place in the centre of our drive.

On Friday I became so concerned about Maureen’s presentation that I arranged a check- up for her this morning.  She is sleeping a lot lately and plagued by an extremely sore mouth.  I managed to make this a joint appointemnt yeaterday so I can also discuss one or two matters of concern of my own. I know that ‘Rav’ (Dr Munjal) will pull out all the stops to see if there is anything he can do to make our lives just a little easier.

Personal reminder: Maureen has been a new woman with purpose in her life but any changes in routine can knock her for six. 

I’ve just remembered a helpful suggestion from a Mental Health Nurse during one of my periods of depression.  He said ‘never go to bed without some idea of how you are going to spend the next day’.  His advice along with support from various other people helped me to find my way out of recurring periods of anxiety and depression.

From now on I will list some possible tasks for the day at the end of each post to try to ensure that we don’t get lose our way on this challenging journey.

Today’s Tasks

  • Attend medical appointments for  health assessments.
  • Make dental appointments.
  • Sort out better arrangements for storing spare bedding.
  • Continue to de-clutter our house.
  • Print photographic reminders of how we spent yesterday.
  • Continue to potter in the garden.
  • Stick to established routines.

Great News: I’ve just had an amazing find – the missing bread knife that belonged to Maureen’s grandmother.  As I gave the bathroom a much needed early morning clean I found it safely tucked away behind the sink.  Now if only I could find the missing butter knife: also precious for the same reason.

Wow the latest search has revealed a key, sharp knife, Maureen’s distance glasses and bus pass all safely stashed away in the pocket of her fleece hidden from view in a wardrobe in the spare bedroom. It’s only a matter of time before I come across Maureen’s engagement ring, our address book and the remaining missing key.  They don’t call me P C 70 for nothing: I’ll make the CID at this rate!

Dementia: Looking Back: Looking Ahead (Week 21)

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Maureen and I had a lovely day out in Nottingham yesterday.  My suggestion that her brother needed cheering up raised my nurturing wife from her bed and we were on our way by 10 am.  Unfortunately, we had to return home 15 minutes later as I had topped up the car with petrol and left my wallet at home.  I also did my usual trick as we approached our destination and took a wrong turning which delayed our arrival even further.

Dianne, our sister in law, provided a beautiful lunch which eased our introduction to new surroundings.  It didn’t take me long to see that it had been worth an elongated journey on a hot day: brother and sister were soon back in the old routine.

After lunch we walked to a nearby park in beautiful sunshine.  Once again the siblings were chattering away as we made our way around a Vintage Car Show.  I was in my element as I stumbled across an Austin 1800 in mint condition and reminisced with the owner about my days on the shop-floor at British Leyland.

We decided to delay our departure from Nottingham until early evening when it was a little cooler.  Maureen was obviously very tired on the homeward journey but we continued with the banter that we had enjoyed on our way to Nottingham.  She took to the sofa shortly after we arrived home and was asleep almost as soon as she laid her head on a cushion.  Around 10.30 pm I managed to ease her upstairs to sleep alone as she wanted a bed to herself because she was too hot.

Maureen awoke at 1pm very distressed and confused about where she was.  Eventually she joined me in the spare room.  Two hours later she was awake again crying that ‘she was in a madhouse where she didn’t know who was in bed with her and she wanted to go home and be with people she knew in her family’.

At around 6 am we have had a very positive conversation about ‘going home’ and being closer to our loved ones.  Maureen has been a revelation saying ‘let’s not get carried away and rush into anything’.  It is lovely to see my wife firmly in control using her intellect to appraise our situation.  I wouldn’t be at all surprised if she didn’t outwit ‘Mrs Dementia’ one of these days and send her back to where she belongs: it might just be that there is something in ‘The P C Approach To Memory Loss’.

 

 

Dementia: Super Saturday

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Maureen and I had a great day yesterday with lots of exciting possibilities emerging on the horizon. She was a revelation once she had come round telling me that she had to stop feeling sorry for herself and get on with her life.  Action spoke louder than words and we were down the road by 9 am seeking advice form Yvonna our chemist about Maureen’s sore mouth.  I jumped at the chance for an early morning walk and an opportunity to return a carrier bag full of out of date medicines that I had sorted out earlier in the morning.

Yvonna chatted with us for a while: charming and informative as always.  Maureen shares my opinion of this lovely woman who is a credit to her profession always willing to go the extra mile for her clients.  Fortunately we already had Yvonna’s prescription in stock so it didn’t cost us a penny to resolve what may well be a viral infection.

We called in for milk on our return journey at a local convenience store.  As we walked home I suddenly realised that I had left the plastic box with ointment and tablets for Maureen’s sore mouth on the shop counter.  We decided to collect them later as we were bot needing our breakfast.  I also knew that Gail was imminent for a carers sit.

Gail played the game of popping in to see how we were but Maureen appeared to smell a rat.   She was clearly puzzled by Gail popping in and it was possibly a mistake to offer cake and coffee to our ‘visitor’. Later in the day I cancelled an extra carer sit today rather than feed Maureen’s concern that our home is never our own.

Maureen slept on and off for the remainder of the day.  I put her exhaustion down to  entertaining of Mala and Amba on Friday.  It is also possible that the infection in her mouth is dragging her down and I have booked her in for a review by the G P on Tuesday.  As Sleeping Beauty rested I managed to move forward on a several of fronts:

If We Don’t Use It Bin It

I continued to recycle or bin anything I came across that we no longer need.  This is something I will build into every day as we need a minimalist approach to life to make this place dementia friendly.

P C Phone Home

Throughout the day I contacted several family members and friends to discuss our options for the next stage of our lives.  This led me to realise how fortunate we are to have such a rich diversity of experience to consult with in our family.   How lucky we are to have those with both a practical and theoretical understanding of dementia so close at hand.  It is so helpful to be able to ring up people you are close to and say ‘what do you think about this idea….’ knowing that you will be supported rather than judged for being so tired that you can’t see the wood from the trees.

‘Do You Know Nana’

Johnathan one of our Grandchildren often used to hail Maureen with the phrase above.  We often use it along with his more famous ‘ Don’t ‘ike it want Bumbi’; telling us quite clearly to get E T off the T V and put on Bambi.  The young man is now a graduate and about to make his way in the world and we  have decided to entitle our book of memories ‘Do You Know Nana’.  We are going to sift through photographs to remind  ourselves of some of the things we have got up to in the last 20 years: those that have meaning will be captioned in a book others will be binned.

Walking By the Trent

I almost persuaded Maureen to have a day out in Nottingham yesterday following her early morning thoughts on doing more.  I returned to the theme a couple of times during the day and phoned to check the availability of her brother and sister in law.  I’m hoping that she has the energy to go today as seeing family will be good for us both.

Here’s hoping for a Sunny Sunday on the banks of the Trent.

 

 

Dementia: Hopscotch, Wandering and Wanting To Go Home

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I wish I could have filmed Maureen yesterday as she entertained Mala and Amba.  We didn’t need to take two of our grandchildren to the circus as the in-house show continued throughout their visit.

When Tapan, my son in-law, and I went off to the local chippie Nana Maureen was playing hopscotch jumping around the patio.  Following lunch the Songbird came into her own with some favourites  from The Sound of Music and South Pacific. 

Popping across to a play area across the road after lunch was a mistake.  The girls enjoyed their time on the swings and slides but Maureen was excluded from the action because of age restrictions.  I failed to understand her response to being excluded and mistook her need for action as wandering.  Thanks to Susan Macaulay I will never use that word again in relation to Maureen’s presentation: ‘wanderism’ is a term that feeds discrimination against minority group – those with a diagnosis of dementia!

My other lesson from yesterday is that it has been a mistake to discourage visits from grandchildren when Maureen’s presentation has been challenging.  My aspirations to keep her safe and comfortable have deprived her of the very things she loves to be:  Nana out in the fresh air.

We are both considering whether it is time to bring our holiday at the seaside to an end.  When we look back we ran off to Cleethorpes to get away from Coventry.   We had both lost our jobs for wanting to be together because our employer responded to the plea of my ex-wife to move us out of her workplace.  Maureen’s post was disestablished leading to redeployment and I accepted a post where I struggled to cope with the levels of corruption and political involvement. The generous settlement terms of my early retirement deal, on the grounds of ill health, meant that I could  pay my way towards a fresh start away from it all at the sea-side.

It would be a mistake to see Maureen wanting to go home as dementia related.  Just the same as it is wrong to describe her wanting to be out in the fresh air as wandering.  As she frequently says ‘we have got no-one here’: she is right.  All of our immediate family live over a 100 mile away with busy lives of their own.  It is time for us to consider the best place for us to be for the next stage of our lives together.

Dementia: What A Team!

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I would not have survived yesterday without significant help from friends (including cyber) professional staff, and family members.   It is possible that I will not have space to thank them all so apologies in advance if I fail to mention you!

My day got off to a good start when I met Ed one of my friends from the Buddhist Meditation Group.  Our chat for an hour or so helped me to understand the ‘message’ a little more.  Ed is such a generous man who is always prepared to meet me at the drop of an E Mail and fields my questions in a very helpful manner.  Like all good Buddhist we ended our chat by talking football as Ed is a ‘Town’ supporter and they have just got back into the Football League.

I returned home from the calm of Buddhism to the storm of Dementia.  Maureen was incensed that Gail her carer had stopped her from walking alone.  She vented her frustration at me for several hours and I had to trail her for well over an hour.  There is little point in repeating her recriminations or accusations: they are familiar tales in the dementia bubble.

During one of the intervals in the hostilities I sought advice from Mel my Admiral Nurse but failed to reach her.  Yvonne the Occupational Therapist who had declared Maureen unfit to wander was on holiday but I had a helpful chat with one of her colleagues about the practicalities of re assessment.   I also managed to reach Sue our social worker who provided excellent telephone support and reassured me that I was on the right track (the digital tracker is currently on charge).

I hoped that tea would move things in a new direction as the vegetarian burgers ended Maureen’s hunger strike and I anticipated all was fine and dandy.  Unfortunately the food may have hit one spot but opened another door and Mrs Dementia re -entered wondering ‘when her husband would come to pick her up’.  She asked me ‘if I could give her a lift home as her kids would be wanting their tea’.  Despite my best efforts I couldn’t help her to see that she was home: during her musings she mentioned Clarice, her aunty, and that opened a door in my thinking.

At a lull in the attack I slipped away to call Clarice with a cunning plan.  Half an hour later I dropped Maureen at Clarice’s where she could wait for ‘her husband’ to pick her up.  Once home again I spoke to Colin Maureen’s son on the phone to appraise him of developments.  He was very supportive and we chatted about contingency plans for my visit to Coventry in a couple of weeks.  Colin made some very helpful suggestions about Ian (his brother) and Barrie (his uncle) potential involvement in the arrangements to see my own family.

I returned to pick up Maureen an hour after I had dropped her off.  In my break from hostilities I completely change my outfit and deliberately wore a red fleece that belonged to Maureen.  Clarice was very tolerant of her niece and husband catching up on the latest news for half an hour or so.  When we returned home as Mr and Mrs Collins I manged to keep conversation on how Clarice was coping living by herself now she was widowed.

Maureen had clearly been frightened by Clarice’s plight and shared her fears about being left alone in a strange place.  She was pleased that ‘I wasn’t angry’ about her thoughts about ‘the need to move from the sea-side and go back home’.

I have managed to stay in bed for about 7 hours and recharge the batteries a little. Maureen has woken a couple of times and reopened a number of issues.  Her initial concern was about going back home.  Then she has moved onto her concerns about short-term memory loss.  Once again she claims that ‘no-one has told her how to get her memory back’ and I have gently contradicted her assertion.  This has not gone down particularly well and I hope I haven’t overplayed my hand.

I have never mentioned  Kate Swaffer to Maureen or Dominique Klotz who advised me to check her out.  I’m so fortunate that Paul Martin my counsellor suggested that blogging might be helpful to me as a Care Partner: as it has opened the door to neuroplasticity.  Kate continues to bang the drum about potential and just as Irving Kirsch was my route out of depression Kate’s has to be the guide on this journey.

I firmly believe that Maureen has the potential to regain her independence and wander safely at will.  It is possible for her to show us that she can cross roads safely and with the tracker in place can get safe help if she feels lost.  All she needs is patience from yours truly and she will prove to others that she is safe to wander.  Once we have overcome that little matter it may well be possible to encourage her to explore other opportunities to get her memory back.

Thank goodness that Lisa will be here with her husband and two beautiful daughters by noon.  We both need a day off and with luck we might make it to the circus together.

Jen one of my cyber friends uses her blog to show gratitude and we wouldn’t cope  without such a wonderful Team who have supported us to find our way on this journey. Once again sincere apologies to anyone who I have missed out on today’s post but you know who you are!

Please note:  I am short of time and have not provided any links to Kate Swaffer or Irving Kirsch on this post: they are well worth following up on Google.

Footnote:  I just couldn’t resist that photo.  Did I ever mention that Coventry City won the FA Cup in 1987?

Further Footnote: 8.15 am the attack continues with a vengeance that I have not seen before: another type of circus.  Where are the clowns?

Dementia: Getting Carried Away Again!

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I’ve done it again got carried away and paid the price with a very challenging night resulting in little sleep.  I have already confessed to a silly mistake last week when I strayed into repairing a fence rather than calling a man in.  This week it’s a side-effect of the Learning The Fundamentals course that has led me to err and stray from my ways as a Care Partner.

Yesterday I spent a far too much time revising my blog and frequently checking if my modifications had been well received. This continual popping upstairs has to stop as my blog already serves me well as a therapeutic tool with the added benefit of an excellent place to seek and receive support.

My focus needs to shift to yesterday’s bewitching experience with once again someone switching Maureen’s reality at the drop of a hat (more on this in a later blog).  From around 9pm last night I was the ‘other Paul’ who emerged in Maureen’s reality without warning.  It was 4 hours later before I dared to leave her downstairs ‘waiting for her husband to pick her up’.

As always I slept fitfully in the spare room until around 4 am when I was awoken by a deafening scream.  I raced downstairs and couldn’t find Maureen anywhere and suddenly realised she had gone to bed.  My hug was well received as Maureen told me ‘she had been frightened’ and promptly drifted back to sleep..

I will continue with the Fundamentals and make minor changes to my blog but not at the expense of seeking to minimise Maureen’s distress.   My blog has already exceeded my wildest expectations as a therapeutic tool and an essential part of my support network. Sincere thanks to all who continue to help us find our own way on this hazardous journey.

 

Dementia: ‘My Wife’s A Scallywag’

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Maureen was up to her tricks again yesterday playing a dastardly prank on me after lunch.  I had drifted off in the armchair as I waited for my pudding to cool.  When I awoke I couldn’t find it anywhere and Maureen was in fits of laughter.  Despite my suspicions she denied any involvement and I had to seek additional supplies from leftovers in the kitchen.

As I washed up in the evening I counted the dishes and realised that we were one short. Putting my helmet and uniform on P C 70 returned to the scene of the crime for further investigations and located the missing sweet: stashed safely beneath the coffee table.  Maureen would have convinced anyone of her innocence by then because four hours later she had forgotten her ‘crime’.

It is lovely when the ‘scallywag’ is here playing pranks on me as she often has throughout our relationship.   Her antics followed a good morning with Charlotte, who had held the fort while I went out shopping.  Maureen likes the ‘new kid on the block’ as she has a wide range of conversation and chatting about her forthcoming holiday in Mexico had gone down well.

The ‘scallywag’ also enjoyed her afternoon walk even though she would have picked up I was on her case.  I steered her in the direction of the chemist for a possible blood pressure check.  Her response of ‘I had it checked a couple of weeks ago and I don’t want to focus on it all the time’ was refreshing.  Then as we wound our way home I built in my own ‘capacity assessment’ to check on her recollection of the Green Cross Code and ability to find her way home.  From what I saw yesterday she is safe to wander but needs help to find her way home.  I reckon there is potential for improvement possibly by bringing the digital tracker into use.

The evening went well with a sandwich and some lovely singing along to Barbara Streisand.  By 8 pm Maureen was obviously tiring and declined a joint approach to solving crosswords.  This gave me an opportunity to deal with my addiction to Salvage Hunters on Quest One.  I like to see Drew Pritchard travel around the country and find hidden gems that his team breathe new life into and make a healthy profit into the bargain.  We finished off with YouTube: eventually settling for the brilliance of Victoria Wood in yet another repeat of something or other.

At 9.30 pm we were both tired and made our way to the marital bedroom.  Once in bed we tried something a little different but were clearly not on the same page and I struggled to adapt to a new position.  In retrospect I think the ‘scallywag’ was up to her antics again; trying to claim the right-hand side of the bed which she forfeited early in our relationship.

I made a silly mistake after an early bathroom call and retired to the spare room.  When Maureen awoke around 2.30 am I realised the error of my ways as ‘a stranger was now in her room and a dog was on the landing’.  Although I joined her back in our bed I struggled to get back to sleep and once again have been up for a while.

It will be interesting to see if Maureen returns to her theme of wanting a day out today.  We had a little pillow talk last night before we dropped off and she suggested visiting my mum today or even a couple of days away (just the two of us).  Things are looking up but I clearly need to avoid dropping off or that ‘scallywag’ will be up to her antics again!

Still reeling from the antics of yesterday I nearly forgot my task from Learning The Fundamentals today: to make contact with fellow bloggers.  I currently have over a 100 followers and have received loads of messages of support and suggestions to help us on our journey.  I’d best pop across their and see how many more positive contacts I can make to help us on our way or as the ‘scallywag’ might say ‘oh are oh are shiver me timbers’.

Dementia: ‘Dharma For Dementia -The P C Approach To Memory Loss’

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This morning I have rebranded my Blog this in response to the second task in  Learning The Fundamentals course that I’m now following: the rationale behind these changes are fully explained on that page.  I have also included a Gravatar with brief personal information and contact details.  It is likely that the format of my blog will be refined as the course progresses

It has been another night of interrupted sleep and I have been up very early this morning.  Maureen is not in good spirits questioning ‘why she has been wasting her life here’.  Fortunately, there is lots of good advice around on dealing with wanting to go home and I hope to follow the suggestions of experienced practitioners on this front.

I have taken to the white board in the kitchen this morning listing four approaches to moving us forward on this journey: tai chi, dancing, meditation and bowls.  The beauty of the first three is that we can easily include them in our daily routines without moving from our home.  They might even be our salvation from boredom with our nightly routine of falling asleep while watching the television.  Bowls means popping in to the local Village Hall: tonight’s the night if we want to catch up with some kindred spirits.

Dharma is an approach to ending suffering within the Buddhist tradition: it offers a methodology for happiness.  The ‘P C Approach to Memory Loss’ is my personal approach to happiness (dharma) as we continue on this hazardous journey.