All posts by It's My Time Now

About It's My Time Now

I am a retired adult educator. My wife had a stroke in February 2014 and developed mixed dementia. I was her Care Partner until she passed in October 2025. This Blog has told the story of life as a Care Partner and now focuses on the aftermath of dementia. View all posts by It's My Time Now →

Dementia: All Singing and Dancing

October 9, 2016General, UncategorizedGood PractiseIt's My Time Now

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: Revolutionary Service To Close

October 8, 2016GeneralIt's My Time Now

7 October 2016

Diana Princess of Wales Hospital, Grimsby dementia ward to close

A hospital ward specialising in dementia care is to close due to lack of money.

The service at Diana Princess of Wales Hospital, in Grimsby, started in July 2015 but has not been able to find the necessary funding of about £2m.

Home from Home helped patients improve their independence and minimised hospital stays, said a statement from NAViGO Health and Social Care.

There were 828 referrals to the service in the year, it said.

Diana Princess of Wales is a 439-bed hospital is run by the Northern Lincolnshire and Goole NHS Foundation Trust.

The trust has 6,500 staff and runs other hospitals at Goole and Scunthorpe.

Home from Home was a partnership between NAViGO Health and Social Care and the trust.

Six weeks ago:

24 August 2016

Challenging the norm: North East Lincolnshire leading the way in Dementia care

By Ebony Chapman News Comments Off

This week North East Lincolnshire has been highlighted as a leading light in Dementia care.

Government data published in the “Dementia Atlas” shows that service users in North East Lincolnshire have the best regular Dementia care in the country, with 86 per cent of service users receiving regular check-ups compared to just 46 per cent in other regions.

Janine Smith, Senior Operational Manager of Older People’s Services for NAViGO who provide a number of Dementia services in North East Lincolnshire, said: “Dementia can have a profound effect on an individual and those around them. It is our duty to offer them the highest level of care and compassion and the publication of the Atlas shows that here in North East Lincolnshire we are striving hard to achieve that aim.

“The report highlights that NAViGO, along with other healthcare partners, are providing an extremely high quality service for our local community which is at the core of everything we do: to provide services that we would be happy for our own families to use.”

Jeremy Hunt, Health Secretary, said nationally: “People living with dementia deserve the best possible care- and this new Dementia Atlas is designed to drive improvements across the country.

“By publishing the current levels of care, we are shining a spotlight on areas where there is still work to be done, whilst highlighting where we can learn from best practice.”

NAViGO recognises that people with Dementia need specialist care and support throughout the different stages of their illness and with this in mind, the new ground-breaking Home from Home service was launched last year here in Grimsby, in partnership with North East Lincolnshire and Goole Hospitals Trust at Diana Princess of Wales Hospital (DPoWH) and is now delivering impressive results.

Older people with confusion and delirium (Dementia) require specialised treatment above and beyond what can be provided on standard hospital wards which often only address their immediate acute medical needs.

The revolutionary Home from Home service combines physical and mental health care for older people in a bespoke environment, in what is believed to be the only unit of this nature in the country.

Service users are extremely pleased with the care they receive from the Home from Home team, with 94 per cent saying they would recommend Home from Home to friends and family.

Spending less time in hospital has a profound impact on an individual and studies have revealed a notable reduction in the average length of stay in DPoWH for people with confusion or Dementia which declined by almost 4 days from 12.7 days to 8.8 days from the inception of Home from Home to the end of May 2016.

It is statistics like these as well as the dramatic improvements to care pathways for people with Dementia which led the unit to be honoured by the Dementia Action Alliance as part of the Dementia Quality Improvement Awards 2016.

Janine added: “We need to think differently about the way in which we provide care and support for people living with Dementia and the Home from Home service is a fantastic example of how doing something in a different way to the norm can achieve better outcomes for the individuals we support as well as their families.”

Can we afford to let this happen?

Dementia: The Benefits Of Humming

October 7, 2016GeneralConfusion, DistressIt's My Time Now

One of the constant tasks of any Care Partner where dementia is a factor is seeking solutions to changing presentation. Some of my latest approaches to our journey are summarised below:

Sleep Disturbance: When I’m woken at some ungodly hour I often find it difficult to get back to sleep. What seems to be working at the moment is to hum this song to myself:

If humming fails to do the trick I stay in bed and I pick up my latest novel:

Image result for The Girl On The Train Book Picture

I’ve almost read 300 pages now after a couple of years without a book on the go!

Frightening Animals In The Room: Maureen woke several times last night scared that there was a dog, then a large fish in the lounge/bedroom room. I eventually managed to ease her upstairs into the marital bedroom where there is more light and less dark corners.

Keeping Tea Warm: Maureen often asks for a cup of tea and falls asleep before it has cooled sufficiently to drink. I plan to put hot drinks in a flask from now on so that they are available at an ambient temperature when she awakes.

Ongoing Distressing Assessments: I’m going to suggest that a Multi-Disciplinary Team approach is adopted by professionals, so all the information on Maureen is brought together and shared. This would end duplication, ensuing distress, save time, and wasting resources.

We Can’t Be Married: I admit I was confounded by Maureen’s early morning assertion that she couldn’t have married me when we were in Coventry because she already had a husband. It was one of those occasions when I resorted to humming another tune to myself and hoping for the best:

Dementia: Missing Without A Trace

October 6, 2016General, UncategorizedBetter PractiseIt's My Time Now

Image result for Little Girl Missing Without Trace Picture

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’

October 5, 2016General, UncategorizedDistressIt's My Time Now

Image result for You Don't Know What You're doing Picture

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: ‘Help Me: Please’

October 5, 2016GeneralDistress, Vascular DementiaIt's My Time Now

Image result for I'm Scared Picture

As the Baby Alarm came alive at 4.30 am this morning I responded promptly to Maureen’s plea for help. She had woken earlier at 3 am needing a drink and I had gone upstairs to read a novel: my latest solution to inducing further sleep.

It is disappointing that after two nights of good sleep we are back on familiar territory. Yesterday’s assessment by our social worker has triggered another night of disturbed sleep. Maureen found Gary’s assessment disturbing; worrying that they are going to put her in a Care Home again.

I sat in for the majority of the assessment. My conclusion is that the process may serve the needs of social services but it inevitably causes distress for the subject. In my opinion the assessment is relatively pointless: a snapshot infected by inevitable confabulation.

No wonder Maureen is scared this morning: feeling that an authority figure is conspiring to lock her way again ! It is disappointing that my priority to minimise Maureen’s distress is being undermined by a bureaucratic need to carry out meaningless assessments.

Dementia: What A Difference A Day Makes

October 4, 2016General, UncategorizedRespiteIt's My Time Now

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

October 3, 2016General, UncategorizedGood PractiseIt's My Time Now

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’

October 3, 2016UncategorizedRespiteIt's My Time Now

Image result for Just what the doctor ordered picture

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: Sending Myself To Coventry

October 2, 2016Mixed DementiaDistressIt's My Time Now

3 am

I have had 6 hours solid sleep and will be leaving for Coventry after a energy boosting breakfast.

My observations of Maureen yesterday leave me in little doubt that she would not live long in a Care Home.

If I leave her there much longer her feelings of being abandoned will lead to further rapid deterioration.

Seeing my mum and brother in their Care Homes this morning will be a helpful reminder of Maureen’s stark prospects if I don’t act quickly on my return.

Footnote:

Arrived safely now waiting for Sky Blue City to wake up!