Category Archives: Uncategorized

Dementia: Feeling The Fear

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Maureen was terrified yesterday as insight into her condition overwhelmed her throughout the day.  Her fears that someone was watching us or preparing to break into our house meant that she kept close to me throughout the day and night.  The woman who often wants to be alone in bed pleaded with me to be beside her last night.  Fortunately, we have both had the best night’s sleep we have had for ages.

I called in the troops to help me address Maureen’s current presentation.  Gary our social worker was on the case yesterday morning as soon as our meeting began.  He has petitioned the Mental Health team with a request for a Care Coordinator for Maureen.  He also counselled me on the importance of keeping well so that I could continue to look after Maureen at home.  He has requested substantial carer sits alternate Wednesdays, and encouraged me to set up regular respite breaks using Ashgrove Care Home.

My evening call to the Home Treatment Team also let further light into a fairly dismal day.  Amanda is exploring the availability of support from Occupational Therapy that could lead to the one to one support from Maureen.

Susan Macaulay put the icing on the cake this morning with comments on this Blog of a  Webinar on Sleep and Dementia.  My cyber pal Kate Swaffer also posted some further useful items on Facebook that are even more grist for the mill.

Camomile Tea is on my shopping list today: another natural remedy that might just help us both with improving our sleep patterns.  Sincere thanks to all who try to support us as we try to stop that ‘Elephant in the room’ from spoiling our lives.

 

 

Dementia: Seeing The Light

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Maureen and I both saw the light in a number of ways in the last 24 hours.  We played musical beds again last night moving from the lounge to the bedroom; then back downstairs again.  When I popped in to check on her early doors I noticed something strange on the bed. I thought no more of it and returned to the spare room.  When I spoke to Maureen this morning she thought there was a baby beside her in a basket on the bed. A little later I saw the culprit – a basket of washing that I had left on the bed earlier in the evening.

I have realised that lighting is so important in our lives now.  If I leave lights on in the house when we go to bed it means that Maureen can move around without being frightened by shapes in dark corners.  Thankfully babies in baskets are not a threat when they are sharing your bed!

We tripped the light fantastic again last night listening to Frank Sinatra and Nat King Cole.  Maureen also burst into song and gave a lovely rendition of Rambling Rose, which created great amusement when I zapped it to her son on the mobile phone.  Unfortunately, I have not figured how to post in on here yet!

I managed to brighten up my morning yesterday with a visit to the Leisure Centre.  I had forgotten how warm water, and good conversation, regenerates the body and soul.  If things go to plan this afternoon I hope to gain similar benefit from a local Meditation Class.

 

Dementia: All Singing and Dancing

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We often start the day with YouTube Maureen loves singing along to the songs her dad used to sing to her when she was a child.  This one is a particular favourite and a lovely way to start the day:

In the evenings I often become our resident D J and put some vinyl on the deck.  Last night Maureen was in exceptional form and took to the floor as you will see .

With dementia you can never predict what is going to happen next.  This morning Maureen has just summoned me because she is frightened because there is a large dog in the lounge and she is frightened by the beast.  She often reminds me that she witnessed one draw blood from your mother’s leg when she was a child.

I understand that those deeply held emotional memories are the last to fade when you have dementia.  Therefore, it isn’t surprising  that Maureen remembers me being ‘horrible to her for putting her in a Care Home last week’.  This could well be one of those emotional memories that will not fade as quickly as some would suggest!

 

Dementia: Missing Without A Trace

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Maureen took off at great speed yesterday evening.  I hastily grabbed my jacket and trailed her down the street.  Despite wearing a pair of my size 11 gardening shoes she was going at quite a pace.  When I caught her up, and handed her a jacket, she said she was looking for her sister who had gone missing whilst in her care.

We spent about an hour looking for Maureen’s sister who eventually became ‘the little girl’.  Our search involved driving around the local area.  On our return home Maureen searched the house and eventually consoled herself that the little girl must have gone home.

My post yesterday pointed out something else that is missing in any appraisal of Maureen’s presentation; common sense and co-ordination.  The snapshot approach by professionals has serious shortcomings as it is infected by the dynamic nature of dementia.  Even the most basic reader on dementia points out that ‘once you have met one person with dementia, you have met one person with dementia’.  They also allude to the constant change that is a feature of the condition.

My mission remains to minimise distress something that was made quite clear to me very early on. by my Counsellor Paul Martin.  His advice is based on substantial experience as a Mental Health Nurse on a Dementia Ward.  Paul will always be a significant other for me, as he helped me to think my way out of depressive episodes, and escape from a life-time on medication.

It is easy to spend your life criticising the approach of hard-working professionals who are often adhering to legislation and the way things have to be done.  That has never been the intention of this Blog.  Therefore, in the next few days I will have exploratory discussion with a number of players to explore if it is possible to adopt a common Agenda that seeks to minimise Maureen’s distress, whilst also protecting her independence.  After all what is the point in having a Master’s Degree in Lifelong Learning and the Management of Change if it remains on our bookshelf?

 

 

Dementia: ‘You Don’t Know What You’re Doing’

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I wanted to make clear that my earlier post was not a personal attack on any individual.

My point is that the procedures that are being adhered to make no sense.

Dementia is viewed as a progressive condition.

There is no treatment available for vascular dementia in this country.

Maureen has been discharged from the Memory Service as further testing is deemed pointless.

It has already been established that Maureen lacks capacity in terms of her social welfare.

Therefore why is any further assessment necessary?

All yesterday achieved was sleep disturbance and  further distress!

 

Dementia: What A Difference A Day Makes

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Twenty four hours on from finding Maureen in despair in Ashgrove Care Home she was singing and dancing along with Bing Crosby.  She astounded me as she sang along to most of the numbers on a double LP – amazing value at 50 pence from a local charity shop.

This morning she was empathizing with me for being exploited by the owners of this ‘Care Home’ – who she feels are making lots of money from my good nature.  I have assured her it doesn’t matter to me as I enjoy looking after her.

You will gather I’m a great believer in accepting Maureen’s reality, and stretching a point  to keep things on an even keel.  It is easier to go along with the extremes of Maureen’s presentation when I have energy, and I now have a ‘insurance policy’ to call on whenever Carer Burnout threatens: Ashgrove Care Home.

When I called at Ashgrove yesterday morning to collect one or two things we had left behind, I was greeted with a resounding message: ‘Maureen is welcome back at any time’. How reassuring that I now have a safety net on our doorstep that I can utilise at short notice whenever I need a period of respite.

I have mentioned on many occasions that we are relatively well served with support in our neck of the woods.  To have found a local Care Home of such quality  is good fortune indeed.  Maureen’s feelings about the place are ambivalent ranging from: ‘never wanting to go back there again’; to saying she would be ‘better off back in hospital as there is always someone looking after you there’.

Edit:

Maureen thinks Ashgrove was hospital just as she frequently thinks our house is a Care Home!

Dementia: Preventing Discouragement

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Following  a few days of Respite, including a break at the Madhymaka Buddhist Meditation Centre there is only one way to move forward: to never get discouraged as I try to fathom out the best way to support Maureen:

As Kelsang Dorde, my dear friend from Madhymaka, would say: ‘its a no brainer’.

Dementia: ‘Just What The Doctor Ordered’

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I journeyed over 200 hundred miles yesterday to hear a common plea from my mum and wife: ‘can you get me out of here’.  It didn’t take me long to consider both situations and  to heed their desperate pleas for help.

Following our usual run to Coombe Park and sharing an ice cream mum was happy to go back to Elm Farm Care Home.  She told me how much she had enjoyed her escape into the outside world for a little over an hour.  As always I told her that her ‘little boy’ would be back soon and resisted the temptation to reassure her once again that I had a woman (wife) to look after me back home.

There wasn’t a great deal of conversation while I was with mum; she doesn’t have a lot to say these days.  I resisted the temptation to give her news of her eldest son.  She wouldn’t have coped well with the news that I’d found him fast asleep in his Nursing Home: comatose in the later stages of Alzheimer’s.

Maureen looked forlorn when I found her in the evening – sitting alone at a dining table in Ashgrove Care Home.  She broke down when she saw me as she thought: ‘I’d abandoned her there for the rest of her life’. It took me half an hour to arrange the second breakout of the day.and bring Maureen home.

As I am writing I’m also trying to deal with Maureen’s reaction to being here: ‘this is not home’ – where she wants to be!   I fully understand that I will continue to pay the price for ‘dumping her in a Care Home’.  However, that is a price worth paying for much-needed respite:  just what the: doctor, Admiral Nurse, social worker, and the Home Treatment Team ordered!’.

 

Dementia: Preventing Carer Burnout

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Image result for Preventing Carer Burnout PictureI’m back home after a very refreshing break at Madyhamaka Meditation Centre in Pocklington.  Being out of the firing line of dementia has given me an opportunity to recharge my batteries and think about how to avoid Carer Burnout.  Good fortune led me to choose Ashgrove Care Home as Maureen’s holiday home.

If Chloe, one of our carers, had not given positive feedback on Ashgrove I would not have gone near the place, as it had been in Special Measures.   That would have been a mistake: as any perusal of Ashgroves latest CQC report will show the improvements that have been made at all levels. My experience since the first time I stepped through the door has been equally positive, and I have no doubt that Maureen remains in good hands.  Ashgrove has now become a serious contender for preventing Carer Burnout with; Day Care, overnight stays, and substantial periods of respite becoming distinct possibilities for the future.

As my good friend Kelsang Dorde would say: ‘its a no brainer’

 

Dementia: What A Team!

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It took a real team effort to ease Maureen into Ashgrove Care Home yesterday.  She was at her articulate best to frustrate any plans to remove her from her home and separate her from her husband.  However one carefully construed last throw of the dice eased her way into Respite Care.

I had never met Sue, the Mental Health Nurse from the Home Treatment Team, before and it was our chat in the garden that was the turning point in proceedings.  We then played out our plans to persuade Maureen to have a look at a place that was not too far away.  Gail our carer accompanied Maureen as ‘her friend’ holding her hand as she stepped into unknown territory.  Once through the door Joanne the Manager of the Home came into play as Maureen was guided to her room.  At this point I read the hand signals of June and faded into the background.

My phone call to Ashgrove from the Buddhist Centre at 7 pm told me just what I hoped to hear.  Maureen had settled in well; had been singing, dancing and had befriended Margaret. What a relief to hear such genuine good news!

All I can do now is take it one day at a time.  We are both in places where we are surrounded by kindness and  will hopefully  get the rest we need.