Dementia: Where’ve You Been?

I came across this story a few minutes ago and just had to share it:

Where’ve You Been?

#1 MUSIC VIDEO – A TRUE ALZHEIMER’S STORY: When Kathy Mattea first sang, “Where’ve You Been”, she wondered to herself, “Do people want to hear this on the way to work?” To her surprise, radio stations could not play it often enough, as the song struck a deep chord in millions of people. It became the world’s 1st song about dementia to top pop-music charts. It won Song of the Year at the Grammys, CMAs and ACMs. Watch the Music Video, Lyrics & How The Song Came to Be: Read more »

Dementia: As Blind As A Bat?

Yesterday’s  visit to Madyhamaka failed to get me the respite I was seeking.  Maureen didn’t like it in a strange place – particularly as she was thinking that we were going to visit her mother.  The whole experience has left us both worn out and put Maureen on red alert about my motivation for doing anything.

When I reflect on my aspirations yesterday they were a clear indication of myopia: a short-sighted approach to the real issues here. The issue isn’t  about seeking some form of a Respite Break it is concerned with getting more rest from my role as a Care Partner.  It is fortunate that I’m due to meet our Key Worker this morning.  Unfortunately, his agenda is preparation for the Best Interest Meeting; while mine is how to increase my opportunities for rest until we gather on the 6th of April.

As Maureen thought I ‘tricked her’ again yesterday I think it would be unwise to carry out our ‘cunning plan’ on Friday.  Care Homes and Maureen do not mix and to con her that she is just going out for a meal and then leave her at Homefield House would lead to accusations that I had gone completely ‘batty’!

Dementia: Cynophobia -Maureen’s Fear Of Dogs

Maureen’s extreme fear of dogs (cynophobia) dominated yesterday afternoon.  It is the result of witnessing a dog bite her mother when she was a little girl and seeing blood flow from a leg wound. She is, therefore, uncomfortable with any dog near her and will cross the road to avoid them.

The dog issue emerged following a conversation with our next door neighbour who we chatted to following a short afternoon walk.  He informed us that a new dog was pending following the death of a previous pet. This conversation led to Maureen thinking that I was going to have a dog and is indicative of how easily she gets confused at the moment.

Once we were in our house, Maureen was convinced there was a dog in our lounge.  She was said their smell had permeated the house and our clothing.  Despite my reassurance to the contrary, this theme continued for some time with Maureen venting her negative feelings about canines. In fact, she said she was moving out because of dogs in the house.

There are no dogs where I’m hoping we will be around noon.  Dan the Man, our chauffeur, will be here this morning to take us to visit Maureen’s brother and his wife.  I have shifted my aspirations from the Buddhist Centre near York as I think Maureen will warm to some family time, rather than being in unknown surroundings.

It will be good to be back in Nottingham visiting old haunts that are familiar to Maureen.  I have a distant memory of being told as a teenager that was where there were lots of beautiful girls: I have been privileged to share my life with one for over a quarter of a century!

 

Dementia: All The Way

Maureen’s self-image was under further attack yesterday when we visited a relative who has her own troubles at the moment.  Unfortunately, her aunt added further fuel to the fire by failing to pay much attention to how Maureen was feeling.  As we walked home I listened as Maureen told her tale of woe and drove a further nail in her coffin ‘that nobody loves her’.

On our homeward journey, Maureen returned to her her theme that visitors to our home are now few and far between.  Although she forgets when people have been, and understands that family members have busy lives, she has a point. The words of her late daughter are worth recalling here: she often said ‘I have a lot on my plate because I put a lot on my plate’.  Her plate was always full but she was our most regular visitor until her condition weakened her so much that she could no longer make it to Cleethorpes.  Maureen really misses her daughter knowing her action spoke louder than any words could ever do.  Celine and Frank have a few words to say on this front:

It has been another difficult night with Maureen lashing out on several fronts.  Theft has been a constant theme of her discourse with the initial focus being on me stealing her car and warnings about the consequences of taking it again.  At 2.30 this morning I was again the guilty party for failing to prevent thieves from stealing her clothes. It has been one of those occasions when Maureen has an unplayable hand and empathy – even a cup of tea – have made little difference.

It is not easy to be at your best when you are woken in the early hours to find Maureen in full flow; particularly when the changes in presentation are so dramatic that you can never predict what you are going to be up against. As I  tried to stem the tide at 2.30 I wondered where the compassionate woman had gone who a couple of hours earlier had been attending to my needs as if I was a young child who was feeling unwell.

I’m hoping that Dan the Man will help me to change things for the better on Tuesday.  He is booked and I’m hoping a day of peace, love, and tranquility at the Madhyamaka Buddhist Meditation Centre will have a lasting impact on us both.  If the going is really good we might even stay overnight.

Maureen found me in the garden early this morning digging a trench for this season’s kidney beans.  She called out: ‘granddad it is too cold for you to be out there’.  I didn’t mind her confusion as she always knew how much he cherished her and he was from a generation that was never too busy to see his family: he loved her all the way!

 

Dementia: Seeing Red

Posted at 4.40 am:

I decided to give myself a Red Card this morning and take a very early bath.  Relaxing in the lavender oil aroma helped to ease my aching limbs and troubled mind.  Maureen chose to converse with me through the bathroom door about ‘her car being stolen’.  I couldn’t quite catch all of her concerns but she was clearly reluctant to enter the bathroom.

Once out of the bath Maureen gave me another Red Card launching into vitriol about being kept a prisoner here.  The usual diatribe followed: I’m not her husband, I’m mad and once the police find out I will be in real trouble.  It didn’t take me long to realise the only solution was to give her space and hope that sleep had a positive impact on her presentation.  She is currently waiting for ‘someone who loves her to pick her up and take her away from this dreadful place’.

At 4.30 Maureen is standing on the window sill shouting for help out of a quarter light.  I have phoned Single Point of Access who are hoping to get Night Rovers to call in and provide support.

Dementia: Reclaiming Our Lives

Hey Kate Swaffer, my cyber friend, we still feel young so I hope you don’t mind me using the cover of one of your publications to introduce this post:

It was good to have a long chat with our Key Worker yesterday.  He was concerned that arrangements needed to be put in place to ensure my wellbeing.  As he rightly pointed out if I burn-out then matters would be taken out of my hands and Maureen would be taken into care whether I liked it or not.

As anyone who reads this blog would expect it would be unlikely that I would walk down that well-trodden path of seeking respite by placing Maureen in a Care Home.  This route has been far from safe in the past and does not address our aspirations of togetherness.  So I am exploring what all couples do: having a break together.  My initial inquiries have gone well.  One of my sisters has offered open house: although it is a bungalow in her case.  The Madhyamaka Buddhist Centre are also keen to accommodate us in their tranquil surroundings:

My previous plans to have a regular break by myself at the Centre do not make sense: we are a married couple who enjoy being together.  I’m sure this is only the tip of the iceberg of getting our lives back as we come up with other ideas for mini-holidays and family members invite us to travel around the country to share their company.

‘Ginger’, as Maureen calls him, also encouraged me to put in place structured arrangements for personal support.  I have, consequently, arranged to meet my Admiral Nurse every two weeks.  This Blog will be used as a basis for discussion on how things have gone in the preceding fortnight along with the reflections of carers.  In addition, I will use my Support Worker from the Alzheimer’s Society to chat over my plans ‘as and when’ as they say.

Plans are already in place to make our home safer and more dementia friendly.  Our decorator is imminent to use colour to make it easier for Maureen to find her way around. Our builder is holding off on plans to make our patio safer until the danger of frost has passed.

Spring is in the air and there is plenty to do in our garden.  It would be easy to spend the summer months pottering in the garden and enjoying the tranquility of Cleethorpes.  This would not address aspirations to get our lives back.  However, if we make sensible arrangements to travel further afield who knows where we might get to in the coming months: then we will both feel we are living again!

Dementia: Communicating With Carers

I have decided to make a copy of my daily posts available to carers on their arrival.  This will give them an inkling of how things have been in the last 24 hours.  I will also suggest how they might approach their time with Maureen. In return, I’m also requesting that they provide a brief summary of how their three hours has gone.

Maureen woke in the early hours of this morning searching for a young boy who she thought had been in bed with her.  At first I though the lad was her son but later she told me it was her grandson.  She searched incessantly for over half an hour and eventually said she must have been dreaming.  I didn’t challenge her reality at any stage of her search and just said I hadn’t seen him.

Once Maureen settled down following her strenuous efforts she was very confused; unsure about where she was and who I was.  An offer of a cup of tea appeared to help matters but she was fast asleep on the sofa by the time I returned to our front room.  These types of incidents are becoming more prevalent and are particularly challenging when you are trying to wake up from a deep sleep.

Our early morning music session on YouTube has brought back a lovely memory.  The first cassette tape Maureen ever bought for me was Working Man:

This song brings back such memories, as Maureen was born in a mining area and tells me she was in trouble as a child for being rude for asking where all the black spots came from on faces of her relatives.

Rita is still singing now and bringing back romantic memories of our early years together.

Update: Maureen woke from a nap at 10 am remonstrating with someone about her finances.  She accused them of stealing all her money and said she ‘hadn’t even got tuppence in her purse’.  It seems it is becoming increasingly difficult for her to distinguish between her dreams and real events.  I will be glad when Girl Every Other Sunday arrives at noon as it is a beautiful day here and I will be able to indulge in some gardening therapy once again.

Dementia: How To Reduce Accidents

Sensible advice from a G P on YouTube:

This is one of our favourites and always brings a smile to proceedings in the mornings.

Dementia: The Stark Reality

The joy of Wednesday morning has been replaced with a couple of days of stark reality.  Just as I thought I’d got vascular dementia in the bag, it escaped and the stark reality of Maureen’s condition hit me straight between the eyes. My optimistic plans of Wednesday morning were a pipe dream and are long forgotten aspirations of someone who has lost the ability to recollect.

Today Maureen’s early morning mode is fear and confusion.  Earlier on she was asking who the young woman was who came the other day.  She has no recollection of why we might need a Wednesday night sitter and says she has never met the woman before, despite it being her third visit.  Yesterday morning she told me that she thought her diagnosis of dementia ‘meant she was mad’.

It was a little reassuring when Maureen’s Care Coordinator reminded me yesterday that with vascular dementia just as you think you’ve got it in the bag it changes and you have to get used to a new reality.  She also asked me if I had heard of ’emotional incontinence’ as it could be behind aspects of Maureen’s presentation, and I confessed I hadn’t.  However, there is one thing I generally have in the bag – how to distract and redirect when Maureen is upset: Bocelli is the man of the moment:

Although I recognise that his exalted position could change and I’ll have to find the next idol for a mature lady: thank goodness for YouTube!

Dementia: ‘It’s Surprising What Comes Back’

It’s been another early start this morning.  Maureen awoke around 2.30 am, having gone to bed at 7.30 pm.  I followed her shortly afterward and had a reasonable sleep apart from having to rescue her when she was wandering around the house clad in blankets at midnight.   I need to check if the CCG’s plans to bring in a programme for improving sleep patterns for those with dementia and their carers has come to fruition.

As we chatted away this morning Maureen said: ‘it’s surprising what comes back’ as she recalled her father’s funeral but mentioned she had no recollection of her mother’s.  This is the first time I have heard Maureen acknowledge that her parents had passed for ages. Generally, one of her first ideas, on most days, is a desire to contact her parents by phone or letter.

Maureen’s thinking this morning encouraged me to push at a door our Care Coordinator had nudged open a couple of weeks ago, and talk openly about her memory problems.  I have to admit this is something I have been nervous about for fear of creating further distress. Having heard a professional skillfully raise the issue I felt a little more confident about taking the plunge myself. I was pleasantly surprised about the conversation that followed and hope that I have moved things on in a very positive direction:

• I have suggested that Maureen keeps a diary of her thoughts, achievements, and aspirations – it is already on the coffee table.
•  Maureen wants to learn how to use YouTube and prompt cards are pending.
•  Following singing along to ‘Do Cry For Me Argentina’, Maureen wants to find out more about Eva Peron and I will remind her of this aspiration

I’m rather tired after a busy morning: thank goodness our night sitter will be here tonight. How fortunate I am to have Key Worker who encouraged me to engage a night sitter and a Care Coordinator who made it easier for me to raise the thorny issues of Maureen’s memory problems without causing distress.