Dementia: ‘Nobody Loves Me: I’m Such a Nuisance’

minimising distress,

Image result for I'm Such A Nuisance PictureWhen Maureen woke early this morning she was very sad feeling unloved and a nuisance.  She was beside herself with her loss of independence and her reliance on others. Her feelings are not surprising when you reflect on such a capable woman now being limited by dementia.  I hope my assurances that I loved her and would do all I could to help her rediscover her capabilities and enthusiasm for life had some impact.

Our Circuit Training went well yesterday and a similar approach is needed to address Maureen’s sadness this morning.   If I pitch it right I have no doubt that Maureen will see glimpses of her old self.  Dementia will mean that she forgets those brilliant moments when she shines but the feel good factor will remain.  Her performance on walking around Royal Court by herself yesterday was remarkable.  She stopped at a lamppost outside the house of a new found friend.  I would speculate that she wanted another conversation with her friend from Durham who she had a lovely chat with the other day.

Her performance on walking around Royal Court by herself yesterday was remarkable. She stopped at a lamppost outside the house of a new found friend.  I would speculate that she wanted another conversation with a lady from Durham who she had a lovely chat with the other day.

Circuit Training will take place again today along with another cunning plan.  With luck, I will persuade Maureen to visit a nearby Auntie who looked after her when she was a young child.  Maureen will feel, and remember, the love of this elderly couple and I will get to hear a more about my beautiful wife when she was a little girl: a BOGOF approach to reminiscence therapy!

Just had the first smooch of the day in the kitchen to this one from the Brothers Gibb:

I think the answer from both of us is an emphatic YES.  What I continue to wonder is if Maureen will ever let me lead?

 

Dementia: Dealing With DOLs

Mixed Dementia,

Image result for Deprivation of Liberty Safeguards Picture

After Maureen’s Run Away Day professional staff are considering if they should apply for a DOLs order in her own home.  It can be argued that DOLs is the best way of keeping Maureen safe in the community but there are serious shortcomings of this approach.

While we were out walking yesterday evening Maureen thought we would be in trouble as she had got the impression that: ‘they thought she was stupid and should be locked in the house’.  She had told Girl Friday a similar story: ‘that her cousin had told her that she was no longer allowed out’.

I have decided to address the DOLs concerns with Circuit Training.  We started the programme last night with several walks around the block.  Maureen may not have remembered the route but her pleasant memories of walking hand in hand will remain: feeling matter (Sheard):

Our Training tonight training will be moved up a notch as I let go of her hand for short periods of time and encourage her to stroll around safe areas under her own steam i.e. set her off at one end of a Close and meet her at the other.

If Maureen believes she is ‘stupid’ then we are on the road to Prescribed Disengagement:

With luck ideas, concerning DOLs can remain where they are best kept: on the shelf!

Dementia: Following The Dementia Sherpa Pays Off

Mixed Dementia,

Image result for tHE dEMENTIA sHERPA pICTURE

I have never been fond of the concept of ‘going with the flow’ as an approach to being a Care Partner: it has always seemed too liberal for me.  When I read the Dementia Sherpa’s thinking it seemed more my style.  As we searched for Jamie yesterday afternoon I think Christy’s hand was close by and led me to the distraction that we needed.  Her guidance also helped me to fill in gaps about Maureen’s recent experience in Respite Care.

When Maureen became concerned that Jamie had gone missing again yesterday afternoon I suggested that we should go and look for him.  As we searched around our neighbourhood the little boy that Maureen believes she plays tag with was nowhere to be seen.  She assured me that he can’t run fast enough to catch her but he is great fun to play with.  I tried to reassure her that he was probably in the safe care of his mother but she didn’t think he would be able to find his way home.  Fortunately, as Maureen was becoming increasingly upset distraction arrived before our eyes with one of our neighbours walking with her daughter whilst pushing a pram.  When her daughter addressed Maureen by name I suddenly twigged: she had cared for Maureen when she had been in Ashgrove.

Maureen enjoyed admiring the baby and exchanging with her great grandmother but she clearly had no recollection of her daughter.  Despite several prompts, it soon became clear that Maureen had no recollection of being in Ashgrove less than a fortnight ago.   However, there were two important things that I  learned during our exchanges.  Firstly, Maureen had hardly slept while she had been she had been in Residential Care.  Secondly, there had been an exodus of staff from Ashgrove who have joined the previous Manager at a neighbouring Care Home.

I’m  clear that Fiblets are a part of my style as Maureen’s Care Partner: honesty is the best policy.  I don’t think it is too much to ask for Care Homes to open the books and let their clients know what is really going on in their neck of the woods.  Is it too much to ask that they provide a basic written report on how things have gone while a loved one has been in their care and that it doesn’t take so long for missing clothing to be returned to the owner?

Footnote: It’s rough terrain early doors as Maureen is on my case about her car and me taking it out and leaving her at home.  I might have to get on my bike today!

Dementia: A Change Of Perspective

Mixed Dementia,

 

Image result for Seeing Things Differently Picture

I think I have been looking at things from the wrong perspective as I have tried to fathom a way forward on this hazardous journey.  Firstly, I have been focusing on Maureen behaviour rather than my reaction to her presentation.  Secondly, I have been concentrating on the view from our lounge rather than reflecting on the beauty of our back garden.  Yesterday,  two people offered me another route on this journey that might just help us return to the straight and narrow.

Christy Moore posted Validation Therapy& Therapeutic Fiblets in Action with real life examples of how to deal with some of the very issues that  Maureen presents on mosts days.  I found her suggestions on how to deal with ‘Wanting To Go Home’ particularly helpful.

The plans from Daniel our architect on a Sun Room as an extension to our house helped me to see how our usual view has been from the wrong perspective.  How lovely it will be to spend our days overlooking our beautiful rear garden rather than the bungalows that are across the road.

If I begin to focus on my behaviour rather than Maureen’s, and we concentrate on looking out of rear windows this journey might just become a little easier in future!

My perspective on yesterday was that we had a really good day:

  • Girl Wednesday was back on duty after 12 weeks off sick
  • Maureen passed her physical with the GP.   His compassionate approach was, as always, person-centred.
  • Maureen’s Care Coordinator discharged her from the Memory Service back into the care of her GP.
  • Maureen was happy and contented for most of the day.  She wondered why the Care Coordinator and her colleague had paid us a visit.  She was puzzled why they hadn’t rewarded us with a prize following their compliments about our rear garden.
  •  We had a lovely afternoon walk around our neighbourhood.
  • We slept well together for most of the night apart from one minor incident when Maureen thought there was a leaking gas pipe in the bedroom.

 

Dementia: A Run Away Day

Mixed Dementia,

Image result for Dementia Assessment Needed PictureI  am requesting an urgent review of our Support Plan this morning after Maureen chose to run away yesterday, rather than have an Away Day.  She slipped off from a carer early afternoon and a couple of hours later declined a short car trip preferring to walk around the local area almost to the point of exhaustion.  Her behaviour during that time exceeded anything I had seen before: vitriol towards me was par for the course but trying to get into neighbour’s cars and homes were new territory.  Thankfully, even those we had never met before grasped that Maureen was unwell and reacted to her compassionately rather than summoning the Police.

It may have been a blessing that the Emergency Services were unable to respond to my request for assistance; their presence could have taken Maureen down an unhelpful path.  If she hadn’t turned round from her mission to walk towards Cleethorpes an ambulance crew were scheduled to intervene.  That may have led to a lengthy period of assessment that would merely have confirmed that her presentation had changed or her condition had progressed.

The night has been far from peaceful with Maureen waking around 2 am convinced that ‘they are trying to put her into a black box.’  She fails to understand ‘why they are trying to get her as she has no money.’

As soon as lines open I will seek a physical review of Maureen’s condition with her GP.  It is possible that infection is creating havoc with her presentation.  I’m also concerned that she appears to be losing weight, as yesterday’s carer was keen to point out.

I’m hoping that our Key Worker will be able to put in some additional support to see if we can help Maureen settle down.  Her Care Coordinator from the Memory Service will be here at 3.30 pm ‘to close the case and refer her back to her G P.’  I think a review of that decision would be appropriate the way things are going!

I just couldn’t resist this after yesterday:

Dementia: An Away Day Beckons

Mixed Dementia,

Image result for Respite Break Dementia picture

If things go according to plan today we are going to have another Away Day.  We plan to be chauffeur driven to visit family in Nottingham.  An Away Day with family is a great way of having a time off from my caring role.  All we will have to cope with tomorrow is a little tiredness; rather than clearing up from the aftermath of Maureen’s stay in a Care Home!

Unfortunately, yesterday did not go according to plan as I had overlooked that Girl Monday has moved to Tuesday.  Now heavy with child ‘Maureen’s Hairdresser’ has reduced her hours and no longer works Monday’s.  However, she will be here on Wednesday and I’m hoping that can be a Pamper Day.

Maureen will love going to Nottingham today to nurture her younger sister.  I’ll be happy to take a back seat while the two of them catch up and chat about the good old days.   I  only hope I have got my days, and who will be where and when, right today.

OMG, the odds have just lengthened on us making Nottingham.  Maureen has just told me she is aiming to ‘get back into hospital as no one is looking after her here.’  It’s going to be another interesting day!

Footnote: the amount of sleep I’m getting continues to improve as you will

Bad News: Maureen says it is too cold to go to Nottingham so no Away Day Today.

Even Worse News: Girl Tuesday has been taken to hospital following a fall at a previous call – I hope she is OK!

Dementia: ‘They All Know Us!’

Mixed Dementia

 

Image result for citizen khan pictures

We would not be able to cope without the support of lots of people who live in our vicinity.  I often adapt a Citizen Khan quote ‘they all know us’ to summarise our notoriety in our neighbourhood.  What the locals know is that Maureen has dementia and we both need their support on a daily

Local shop assistants are a great help even when they have customers waiting to be served.  We often pop across the road see our friends in local stores who are all willing to give us time and consideration even when we have just called in for a chat.  If I’m out ‘wandering’ by myself the first question locals ask me will generally be associated with Maureen’s welfare.  Whenever she slips out without me noticing it would be unusual if someone doesn’t tip me off that she is out by herself: frequently they ease her back to the safety of her own home.

If ever I’m struggling with her presentation I’m spoiled for choice over whose door I can knock on for a little distraction and redirection.  I can honestly say I have never been turned down at any time of day or night in my hour of need.

When I spotted Hattie and her mum across the road yesterday I thought it was an opportunity too good to miss.  Maureen adores the company of little children and loved having a toddler on our drive.  It’s a shame that both of our families live so far away so I think we might ‘adopt’ Hattie and her brother.  He wasn’t around yesterday as he had gone to visit relatives in Coventry.  If we had known we could have asked him to pop in and see some of ours!

Maureen greeted Girl Sunday with ‘we’re seeing a lot of you lately’ – possibly remembering that she had been with us 24 hours before.  They did some sterling work tidying up while I went to top up our provisions for the week.

Following a siesta, we had a lovely afternoon as Maureen watched me pottering in the garden through the patio doors.  She popped out occasionally to assist and praise my efforts.

With vascular dementia, you can never predict how the day is going to turn out but it was good to enjoy the ‘Day Of Rest’ yesterday after a very busy Saturday!

I completed drafting the above just after 9 pm last night as Maureen lay fast asleep on the sofa.  I’m back on the keyboard shortly after 6 am, so I’m almost sticking to the regime I outlined yesterday and how the last nine hours went are outlined <HERE>.

I’m going to suggest that Girl Monday offers one of her Pamper Days this morning.  She has an excuse to guide Maureen into the shower as she is now half-way into her pregnancy and finds it difficult to bend over the sink.  I’m hoping my ‘Silver Lady’ will look a million dollars when I return from the Leisure Centre – attired in the outfit I have left on a hanger.  With her hair such a beautiful shade now I called up David Soul for her on YouTube yesterday:

 

Dementia: Hot Weather and Hallucinations

Mixed Dementia, ,

Hallucinations while sleepingTemperatures were soaring here again yesterday.  We got off to an early start at a local Car Boot Sale where I bought some additional plants for my vegetable plot.  It was so hot by the time we returned home that I’m not sure if they will have made it through the night.

When Girl Saturday arrived Maureen asked her ‘if she had enjoyed Christmas’.  She soon hooked into Maureen’s reality sharing how things had gone back in December.  As she skillfully moved Maureen from the lounge to ironing in the kitchen the catching up exercise from Maureen’s stay in Respite Care was moved forward.  All that remains from that episode is the return of several important items of Maureen’s clothing.

As  Sanchez popped in an early opener for the ‘Gooners’ in the F A Cup Final a challenging series of events began to unfold.  Maureen told me she had rescued a little boy in the garden who had got entwined in some garden canes.  He had been taken away by firemen as he had also fallen into a ditch used for drainage by the Golf Club.  We then searched the local streets for him for over an hour with Maureen becoming increasingly upset about his welfare.  It took a couple of calls on my mobile to and from the Home Treatment Team before I managed to get Maureen home.

During our final trek home, Maureen left me in no doubt that she could see through the ‘lies of the Nurse’ who had advised her to go back to the house saying: ‘those people think I’m stupid and tell me anything to get me to do what they want’.   However, her choice of language left me in no doubt that she thought the Nurse who spoke to her on the phone was born out of wedlock. 

Maureen woke several times in the night concerned or scared about one thing or another.  If I am to survive this part of our journey I need to work hard on getting adequate quality sleep and I will detail my approach <HERE>.

Just as I was concluding this post I  responded to Maureen crying in the bedroom.  She has returned to a familiar theme that ‘ she wants to go home as no one wants her or comes to see her’.  I have suggested that we could visit folk who can’t make it here at the moment but I genuinely think she is too worn out for a long car journey in this heat.  Thankfully, the subject of my Good Music page will be here at noon and that is something for us both to look forward to!

 

 

Dementia: A Stupid Mistake

Mixed Dementia, , ,

Image result for A Silly Mistake PictureWhen I finally decided to get up this morning, very tired after a difficult night, I thought I had made a stupid mistake during yesterday’s meeting with our Key Worker.  On reflection, I had spent too much time chatting about what had happened during my Respite Break, rather than what lay ahead.  None of that conversation will help my aching body and tired mind this morning.  Then as I woke up it came to me: I don’t need additional carer sits today or tomorrow I need domestic support.

A simple phone call to the Agency requesting that Girl Saturday and Sunday arrives at 11 am rather than noon could make a significant difference to our weekend.  We will pay for this additional time as we need help with domestic duties rather than additional sitting time with Maureen. The time has come for the Resident Chef to hand over Saturday and Sunday dinner to The Girls.  My only problem will be getting through on the phone as this particular Agency has not acted on a phone message I left earlier in the week!

As my Admiral Nurse reminded me on Friday we never know what is behind changes in Maureen’s presentation.  Last night was a belter with Maureen awake every couple of hours with extreme levels of fear and confusion.  She has just stirred again seeking confirmation that we are married and enquiring what time I will be going to work.

I’m hoping that complimentary therapy of a different kind might ease things a little during this challenging phase of Maureen’s condition.  She often says she feels useless at the moment, so I’m taking every opportunity to thank her for all sorts of things: from her pleasant demeanor to how stunning she looks since she had her hair trimmed in Ashgrove.  Unfortunately, I have mislaid the reference for this approach and hope readers remind me of the author of this strategy to supporting someone with dementia.

One obvious activity today is to dig out our wedding video and photos.  It will be interesting what memories this might evoke for Maureen: it will certainly remind me of how stunning looked on our Special Day.   I’m pretty sure we have both got our outfits and wonder about a dress reminder of our Special Day – now that would really be a special kind of a distraction if the going gets tough today.  How on earth I shift her from looking for her mum and grandmother this morning is another matter!

Dementia: Memories Of The White House

Mixed Dementia,

Image result for the white house agni corfu picture

It was warm enough in Cleethorpes yesterday to remind us of the beautiful holidays we spent in Corfu.  The memories of those hot days scrambling over the rocks from Kalami to Agni Bay taking in the White House, pictured above, came flooding back.  This is the spot where Gerald Durrell wrote My Family and Other Animals.

It may have been the aroma of factor 30 sun tan lotion that brought back the nostalgia of those beautiful days in Corfu.  One year we had three separate fortnights in Kalami; each time as we landed on the island keeping our fingers crossed that we would be ‘allocated on arrival’ to our favourite spot.  We didn’t have much money in those days and took pot luck with telephone deals from Portland Holidays costing around £150 for a couple of weeks in the sun.

I’m hoping that the hot weather was the guilty party for Maureen’s challenging presentation yesterday when I just couldn’t keep her in the house.  We walked together ‘early doors’ and then I seemed to spend the rest of the day tracking her or waiting for her to return.  On one occasion it took over an hour to persuade her to come back home. after she had even declined an offer from Girl Wednesday of a lift in her car.    Then late afternoon, a kind neighbour drove her to our door after finding her on the way to Cleethorpes.  I am beginning to wonder if she was after a bottle of Ouzo or seeking the shade of the White House.

Our Key Worker is due at ten with some feedback on Maureen’s presentation while she was in Ashgrove.  It is unlikely that he will be able to tell me anything that would convince me to risk putting her into a Care Home when I meet Irving Kirsch and Tom Schuller, in London, towards the end of June.  I wouldn’t want to be wondering how Maureen was when I  was having dinner with two people who have been so important in my life:  Irving’s research helped me to escape from a lifetime on antidepressants;  Tom supported me at Warwick University with my own research for a Masters Degree.

In future Carers’ Respite has to stick to the decision of the Best Interest Meeting to the letter: ‘for Maureen to be cared for in her own home’.  That will be expensive and difficult to organise but  Maureen has paid a very high price for the alternative!