Dementia: Facing Reality

Mixed Dementia, ,

Image result for Facing Reality Picture

I felt tired and completely overwhelmed by our situation yesterday.  Throughout the day I struggled to cope with my environment.  Maureen’s presentation fluctuated at such a rate that at one stage I doubted who I was and where I lived.  Our builders, along with two joiners, were making such a racket that any thoughts of a siesta were out of the question.  The shell of our Day Room was being used as a dumping ground and resembled a bomb site.  Towards the end of the day, I began to wonder whether I had got carried away with the ideas about a Day Room and was failing to face the reality of life as a Care Partner.

Maureen woke very early this morning and I tried a bit of Barney to cajole her into the marital bed:

This was a person-centred approach as Maureen loves a lot of Barney and will always join in with the chorus.  Once again she was ‘having none of it’ as they say and went on to berate me for ‘never being at home or often in the bed of others’.  It didn’t take me long to understand that she was confusing my behaviour with ‘her previous’.  However, shifting tack again did the trick and led to a really positive outcome.

I decided to give Maureen space before turning on Mr Nice Guy by telling her about my faltering attempts to return to drawing.  After describing my struggles with the pencil yesterday I told her that I wanted to attempt to sketch her while she was sleeping.  She then asked me what I wanted to do today and I suggested going for a walk on the beach and collecting shells.  We made this a date and collection will begin later – weather permitting.  If our mission is successful we plan to paint the shells and add to the collection that we already have from the efforts of our grandchildren.

The reality of this morning is that Maureen may well forget about our planned walk on the beach.  What I have to face is that I can’t go on like this: no-one could or should be expected to.  The demands being placed on me are unsustainable.  This became obvious when I met our Key Worker last week.  He was uncomfortable with my plans to engage a carer for a 48-hour stint so I could have a break.   Any reader of this blog will be aware of the exhausting sagas that have followed previous ‘Respite Breaks’.

I have not been able to sleep, and have been ruminating over our situation, since my early morning awakening.   A ‘Respite Break’ is far from the solution, in fact, we have been worse off after a period of separation.

The ‘shell seekers’ have to come up with their own solutions to the challenges we now face.  Some of my initial thinking has been along the following lines:

  • Using carer sits to reduce my involvement in domestic tasks and cooking.
  • Exploring the possibilities of short breaks together.
  • Exploring new activities together and with others.
  • Seeking advice on how to make our home more dementia friendly.
  • Reviewing the outline plans for our Sun Room.

There is no doubt that the level of support we receive in our neck of the woods is exceptional.  The attempts to support carers and their partners in a person-centred way are genuine.  However, the reality is that I’m tired and ‘Respite Breaks’ have not worked: so we have to try something different!

Footnote:  Just as I am about to post Maureen is campaigning to be taken home.  She doesn’t want to stay in here any longer as she is now fully recovered.  I doubt we will make the beach this morning but the aspirations of the ‘shell seekers’ remain viable!

 

Dementia: A Change Of Tack

Mixed Dementia,

Image result for Changing Tack Dementia Cartoon

I got it completely wrong this morning with my 2 ‘o’clock greeting to Maureen as I heard her make her way upstairs.  She didn’t respond at all well to my Charlie Drake impression of: ‘hello my darling’.  It soon became clear that the feelings were not reciprocated as I was the man who was encouraging her ‘to sleep or dress up in horse blankets’.  She then went on to ask ‘why was I talking in a strange voice or if I was drunk?’

It didn’t take me long to grasp that my aspirations to get her into bed beside me were rather optimistic.  Clearly, my hopes to provide early morning cognitive stimulation were out of the question: getting my marching orders were far more likely!  However, rather than leave Maureen to rant I decided to change tack in an attempt to shift her reality.

My first move was to address the horse blanket issue head on and agree that we needed softer bedding.  Two old nags like us need the comfort of continental quilts and all we have to do is cut up a double to make two singles.  Having solved this issue I returned to something I had mentioned yesterday: to start sketching again  I  showed Maureen some of my previous work.  She suggested that I had a hidden talent for drawing and that led me to mention Susan Boyle.  Once I called her up on YouTube we were away; singing along for over an hour, especially to this one:

I think I will leave my Charlie Drake impressions alone for a while: I’m clearly not at my best first thing in the morning!  Sketching is something that may well become a joint activity particularly if I choose the right moment and have some music on in the background.

A short while ago Maureen asked me ‘how is grandma this morning?’  I’m used to her not knowing who I am but her son was shocked yesterday when for a while she thought he was her brother.  He was also surprised by how much her dementia had progressed since his visit earlier in the month.  Maureen has not mentioned anything about her son following his visit and remains distressed by the absence of visitors!  I have asked our Key Worker to visit on Wednesday afternoon to review Maureen’s presentation.  It is now a year since I was told Maureen had ‘moderate to severe dementia’ and her son and I both wonder if that diagnosis is still appropriate.

Dementia: Having It Off

Uncategorized

Image result for Having The Weekend Off PictureI have decided that until further notice I will not be posting at the weekend and intend to keep all social media switched off.  This will give me plenty of time to explore whether playing this week’s selection of Good Music really does improve cognitive function!

Dementia: Raising The Roof

Mixed Dementia, Uncategorized

Image result for Raise The Roof Picture

There are lots of reasons to raise the roof  today in our neck of the woods:

  • Navigo has once again been nominated for a national award for its work.
  • The ‘joiner’ is due today or Monday to begin his work on Our Day Room
  • I’m meeting our Key Worker this morning to review how things are going.

When Roy Lilley praises something then it is worth taking note.  He was full of praise of Navigo following his flying visit to Grimsby earlier in the week.  As I have often posted we are very fortunate to live in North East Lincolnshire where person-centred care and support for carers is the order of the day.  There is also a willingness to listen when things are not going well.

Our builders continue to make significant progress with our Day Room.  The shell of our extension is now standing and if a joiner makes it on time we will be ready for the roofer next week.  Maureen often goes out to check on the progress of our builders and their interaction with her is ‘as sound as a pound’.  If there was a register for dementia friendly businesses I would campaign for their inclusion.

I’m looking forward to my meeting with our Key Worker this morning as we need to consider Maureen’s presentation.  He is the only professional that Maureen ever remembers.  She often asks if ‘Ginger’ will be popping in to see us and that is a mark of his impact: she has no idea who the other professionals are!   She is also unaware how he will pull out all the stops to support us to continue living together in our own home.

 

Dementia: Just When I Needed You Most

Mixed Dementia,

I did my very best to give Maureen a lovely birthday.  Things went well until late evening when we walked along the Prom and Maureen she told me that she felt so alone living in a strange place.  This feeling intensified when we returned home: ‘somewhere I had bought with money I had stolen from her’.  This theme continued as the evening progressed until I decided to take myself out of the firing line and go to bed.  I was awoken a couple of hours later by Maureen banging on our front door and begging to be let out.

Once I was in sight the verbal assault continued about my selfish nature: ‘bringing my wife to a horrible cottage and completely ignoring how she wanted to spend her time.’   The attack became relentless and I phoned Single Point of Access to advise our Key Worker that I was exhausted I would need additional support today.  As always he will phone as soon as he in the office to discuss an appropriate way forward.

Once things calmed down a little with Maureen eventually apologising for her ongoing outburst, I had time to think about what was going on.  I  noticed that all of her birthday cards were scattered around the house unopened.  I remembered how she had been adamant that people should be coming to see her on her birthday rather than chasing around the country to see them.  Then I also recalled how she had refused to take a phone call from her son late in the evening: we had missed earlier calls from him and his brother.

Maureen’s presentation on her birthday reminded me of David Sheard’s  thesis that feelings matter most with dementia:

How would we expect someone with moderate to severe dementia express feeling deserted of their birthday?  What other option did  Maureen’s have than to share her feelings of neglect with the only person who had been present on her birthday!

Dementia: Distract and Redirect With Helium

Mixed Dementia

This morning I have used helium to distract and redirect Maureen.  Half an hour into her birthday she was crying that she wanted her mum.  I tried to console her for a while before encouraging her to seek further sleep.

Once she was in the land of the nod I fetched a helium filled balloon with ‘Happy Birthday’ on it from my car.  She stirred when I came back in the house and was very pleased to be reminded that it was her birthday.  I then decided to begin the birthday celebrations by calling up appropriate songs on YouTube.

The early morning birthday party continued for a couple of hours.  I’m not sure how we will spend the rest of the day.  I have suggested visiting family but her understandable reaction has been: ‘why should I go and see them, they should be coming to see me?’

I very flattered by Maureen’s thoughts that she just wants to spend the day with me.  However, I hope we are able to catch up with some people who are never too busy to show Maureen how much they love her!

Footnote: I have blanked out Maureen’s face following safeguarding advice.

Dementia: Dreams and Reality

Mixed Dementia

Image result for Dreams and Reality Dementia Picture

The times I really feel out of my depth here is when Maureen wakes up after a sleep.  Yesterday was a prime example of my struggle on this front as she awoke from her afternoon nap convinced that ‘her sister was missing in the water’.  It was one of those occasions when I decided it was advisable to challenge her reality by telling her that she had probably been dreaming as we hadn’t seen her sister for months.  I even suggested that she should make a phone call to confirm that her sibling was safely at home in Nottingham.  She replied that this would be pointless as she didn’t know where we were herself!

Our Key Worker contacted me yesterday to touch base after being on leave for over a week.  He was obviously concerned about the early morning events and wondered if such episodes were becoming more frequent.  He has also raised concerns about the back up that would be available for Our Night Sitter with my plans for her to be on duty for 48 hours in mid-August so that I can go to the Buddhist Centre in Pocklington. Therefore, we have agreed to have a catch-up meeting on Friday morning.

I’m very conscious that my Blog is becoming a place where I concentrate on the extremes of Maureen’s presentation.  The events of Monday morning meant that I didn’t share a very positive experience from Sunday morning.  With an LP by Roy Orbison on the deck, I decided to try a little art therapy.  As Maureen sang along with Roy she even added the ‘GRHH’ in Pretty Woman:

She coloured in a picture for a while and even wrote me a message. Unfortunately, the book that we were using has gone missing, so I can’t share her work. What was interesting was her that phonetic spelling of my name as ‘Parl’ and you as ‘yoo’.  I’m out of my depth trying to draw any conclusions from her writing.  What I do know is that playing familiar music in the background seemed to encourage Maureen to participate in new activities and is a strategy worth repeating.

 

 

Dementia: You’re Never Alone Here

Mixed Dementia,

Image result for Keep Calm You're Never Alone Picture

One of the advantages of living in North East Lincolnshire is that support is available 24/7 and I certainly needed it at 2 am this morning.  Maureen had already woken twice: at midnight searching for shoes that had been stolen, and an hour later trying to find her missing blanket.  By 2 am she was demanding to be let out as she was being kept here against her will.

Once outside she sought help by knocking on doors and shouting for help as she walked around the local area.  My call on my mobile to Single Point Of Access led to an assurance that help would be on its way as soon as it was available.

Maureen continued on her journey announcing to all and sundry that she was ‘being followed by a pervert’.  She was telling me in no uncertain manner that ‘I had problems with my head’.  I tried all I knew to get Maureen to go back home but as they say ‘she was having none of it ‘.  Then I spotted Jack a young man smoking at the side of his car and summoned his help.

Once I had explained the situation to Jack he introduced himself to Maureen and attempted to guide her back home.   I walked behind them for some time keeping a safe distance.  Then I received a call from Roving Night Carers from our Agency that they had us on their radar.  When they drew up  Maureen was hostile towards them and resisted their offer of a lift back home.   This gave me an opportunity to intervene; so I crossed the road said ‘hello Maureen’ and took her hand.   She seemed very relieved to see me and happy to escape from the ‘two nosy women who were asking her questions’.  The RNC trailed us in their car until Maureen was safely back home again.  However, once we were back in the house I was back to being this guy who messes with her life.

At 7 am Maureen woke up and greeted me with ‘hello Granddad’.  I think she thought I was ‘John-Willy’ as her maternal grandmother often called her husband.   I saw no point in challenging her reality and asking if he was ever known as Jack but I am very grateful to the stranger with that name who was so helpful last night!

 

Dementia: Having It Off

Mixed Dementia,

Image result for Having It Off Picture

After a very disturbed night, at silly ‘o’clock, I have decided to have a day off.

Girl Sunday will cook today’s lunch and it’s ready made pizza for tea.

All social media is being switched off for the next 24 hours.

I’m about to try to get some more sleep.

Have a good day.

Dementia: Seeing The Light

Mixed Dementia,

Image result for elderly man seeing the light picture

I went to bed shortly before 9 pm last night, leaving Maureen fast asleep on the sofa in our lounge.   As always, I left the landing light on hoping that it would lead Maureen to the marital bedroom later in the night.  My cunning plan worked and a few hours later I heard her coming up the stairs making for the bathroom.  Just to be on the safe side, I hastily made for the spare bedroom to try to avoid the issues of a ‘strange man’ in the bed.

I left Maureen to it for a while before attempting to ease her into bed.  However, she told me that ‘she would be in trouble with the school if she stayed in the bedroom’.  She sat on the bed for a while before going downstairs again.  I heard her close the door of the lounge so I decided to leave her to her own devices for a while.  An hour or so later I found her curled up on an armchair asleep.  When she stirred she told me she had been singing that I was The Wind Beneath Her Wings: then I got a short sharp shock.

Maureen hero was, in fact, her dad.  That became clear when she reminisced over my (his) generosity in funding a family holiday to France.  She went on to say she hoped I (he) had some photographs of a wonderful camping holiday.  Her confusion of people became even more evident when she pondered over whether ‘Paul had been the driver’. Then she decided he couldn’t have been but she was unsure who was!

As I drafted this post, Maureen appeared upstairs again announcing she ‘doesn’t want to go to school today’.  Apparently, it is ‘one of those dressing up days’ and she ‘doesn’t want to be involved’.

Whenever Maureen talks to me as if I am her dad I accept her reality.  She clearly has very fond memories of a wonderful father.  At other times I am supportive when she is sad about the tough life he had coping with epilepsy and trying to make ends meet. Her confusion about time, person, and place means I have to listen very intently throughout the day. to work out who she thinks I am.  If I don’t ‘see the light’ and make assumptions about my status I would find myself in real trouble when I try to persuade my wife to join me in bed or even risk asking her to take her pants off!