Stepping Out of the Dark Hole

As 2017 came to a close and endless googling,  I turned to Twitter to see what I could learn about my new world of Dementia.

In January I took part in my first research study and Twitter became a source of information and support, which I am truly grateful for. Twitter was an empowering experience, which made me realise that the media perceptions of wrinkly hands and suffering didn’t apply to me and reignited my passion for good quality person-centered care, which had been my ethos throughout my time working in care.

Some of the “new” initiatives I read about made me smile, such as #EndPJParalysis, something I had practiced since my first day working in a Care Home nearly 20 years ago. As the years went on, I am became an advocate for patients, enabling them to speak out and stand up for their rights and challenging Doctors and doing the best I could for the people I cared for.

Another turning point was at the beginning of April, I began to read about the “A Good Life with Dementia” course, which I was lucky enough to attend, even though it meant a 130 mile round trip and I had begun to write my blog by this time.

In my blog, I write about my journey, rights, events amongst others to raise awareness and advocate for change.

At this time I also learnt that simple things like an app on my phone, so that my wife could track me and thereby reduce her worry, enabled her to allow me to get out more and feel like I was living not surviving. 3 more research studies followed and I am now a couple of months into a 1 year study.

Since then, along with Twitter and a new Facebook group, I have joined a number of Groups:

South Yorkshire Research Advisory Group
Young Onset Dementia & Alzheimer’s (YODA)
Young Dementia UK Network
Dementia Alliance International
DEEP UK SHINDIG Group
Dementia Diaries

along with a couple of Dementia Cafe’s. Last week I had discussions with Sheffield University and Dementia UK about bringing Admiral Nurses to Sheffield and next week I will be trying out a Dementia Friendly Cinema screening.

6 months into 2018, my lived experience is more positive. I seem to be in a much better place going forward and the path of learning, advocacy and raising awareness have given me the strength to continue fighting mine and for others Dementia for as long as I can.

My blog reader, as well as record of my journey, I hope, will perhaps empower someone going through the same journey as I started about four and a half years ago to put aside the negative stereotypes and look for ways to live their life with Dementia.

 

In The News – June 2018

In the news this month:

Free app helps Dementia suffers find their way home

Care home to put on Dementia support groups

Why all care homes need sensory stimulation

We’re told we are a burden. No wonder disabled people fear assisted suicide

New service for young Dementia patients in Suffolk

Anger as wheelchair users left unable to ride trains on major route

My son has Dementia at 12 years old

New data confirms postcode lottery for old

Herbert protocol arrives in north east Scotland to help people with Dementia

Bridgewater woman determined not to let early onset Dementia stop her adventures

People with long term conditions, shouldn’t be forced to pay for prescriptions

Dementia in your 40’s – Life isn’t over, it just changes

Since my husbands diagnosis with Kennedy’s disease, Our income has plummeted

There’s comedy as well as tragedy in Dementia

Dementia friendly park in Stirling is Scottish first

Disabled people losing their benefits a scandal

France starts work on revolutionary Alzheimer’s village where patients roam almost free

Memory interrupted

Do we have a right to a good death

Can technology help Dementia patients

Non drug approach leads to massive decrease in BPSD

In a wheelchair and want your benefits? You’ll need to take the stairs

Dementia Dogs at the ready for new patients and carers

Four years after my Father died, we’ve reached a milestone in Dementia care

Thousands in Shropshire unaware they have Dementia

Tireless Dementia activist awarded the British Empire Medal

Councils tighten reigns on personalised care

Living with a Dad who has Dementia

Sainsbury’s trials relaxed checkout lanes

Inquiry into Dementia and Disability launched by APPG on Dementia

Elderly social care should be free at point of need

Carers don’t need to be paid compliments, they just need to be paid

Dementia checks from 40 to be carried out by GP’s under plan to tackle disease

Why won’t ministers come clean about the impact of cuts on the disabled

Alzheimer’s Society says new dementia guidelines is just the start

Lewy Body Dementia: One couple’s story of caregiving

New Dementia briefing suggest that behaviour that challenges can be the result of unmet needs

How patients with Alzheimer’s disease hide their forgetfulness

Staff caring for Dementia patients must be trained in understanding their identity

Fiona Phillips has revealed she feels guilt of not seeking justice for Dad who died after being over-medicated in Hospital

UKIM Briefing – Westminster Hall Debate -Government’s response to UN Committee on the Rights of Persons with Disabilities report

Stigma and negativity has effect on people with Dementia specialist says

Dealing with dementia: Alzheimer’s New Zealand provides support and education

New fund to help local charities implement Carers (Scotland) Act 2016

Incredibly moving moment Sky News host brought to tears during touching dementia interview

Simon Pegg lends his support to new Dementia awareness film

REAL LIFE: ‘Dementia is not a life sentence’

Fundraiser aims to cycle 330 miles for dementia charity

Blue crockery increases appetite of Ysbyty Gwynedd patients affected by Dementia

‘It was very scary and isolating’: The Veronicas discuss the shock of learning their mother Colleen has dementia after four years of misdiagnosis

Achieving the WHO’s Global Action Plan for Dementia

Stigma and negativity has effects on people with dementia says specialist

Dogs helping those with dementia look for new home

Baroness Thomas: We were world leaders in how we treated disabled people, but the crown has slipped

Specialist shares how to help local dementia patients

Access to care for dementia must improve, says Owen

College students work in community with dementia charity

I am not paid or induced in any way to mention any articles and I do not necessarily support any comments, language or the use of specific words.

I haven’t included any articles about cures, as I feel they are misleading. Apart from the current medications, all recent clinical trials seem to fail by stage 3.

I have also excluded the eat this, drink that, do this to reverse Dementia type of articles. We are all different, so again false hopes and impressions do not help.

UN: spend an extra £5tn by 2030 to tackle global ‘care crisis’

May 2018 July 2018

 

 

Coping Strategies

This is a series of 5 articles about coping strategies, suggested by Truthful Loving Kindness.

I should say reader, at the outset, that I understand that the previous articles may not all be suitable for everyone, all our Dementia’s are different in some way and , you may not be able to use some of the things mentioned for whatever reason and we are all at different points in our journey but I hope it has given you a little insight into ways that we can live with our Dementia.

In general, I would say reader, that it’s what works for you whether you, the person living with Dementia and their carer.

We are all different and you couldn’t draw up one strategy for all of us. If there are 850,000 people with Dementia in the UK, there would need to be 850,000 strategies.

The only thing that should be the same in all coping strategies is respect for our rights under the UN conventions.

You may need to make adjustments around the home, patterned walls and carpets may become a problem as can dark colours, taste changes so the food and drink we like can change, tablet boxes usually enable you to put a weeks tablets in separate compartments and thick curtains to emphasise it is night time, whatever works for you.

Music can be beneficial to a persons mood and can bring out memories of a better time.

Henry and his music

Dance can be an enjoyable activity for a person that used to enjoy dancing. As well as evoking memories it can also be seen as a form of activity.

If you are a person living with Dementia or caring for someone with dementia reader, there is no shame in seeking help, you should see it as part of your coping strategy, you may be surprised at how many people are feeling the way you do or may have a solution to a problem you have.

This may just mean joining a support group or online forum. It may be you go to talk to one of the carers charities.

We each have individual needs, likes and dislikes which need to be taken into account when working out a coping strategy.

We can resist change, even at the early stage of Dementia, we may not want to go somewhere new but you may find once we get there, we enjoy it.

We may not be able to express ourselves in ways people are used to, but whatever stage we are in, we are still the same person inside.

We will face challenges from sounds, patterned flooring/walls, communication, taste, sights, walking. memory amongst many others which are normal for our Dementia’s and should not be a source of embarrassment.

We should be accepted for who we are not what we have become. A diagnosis is not the beginning of the end, it is the end of the beginning and we can live within the boundaries of our Dementia’s with the help of coping strategies.

Primarily, a coping strategy should be enabling not disabling, it should enable us to live our lives fully, to continue to do as much as we have done before, within the limits of our Dementia however, it should also be enabling for the person/family who do the caring.

If you are the carer reader, there is no shame in making time for yourself, YOU MUST have time away from our Dementia, as much as is practical.

If you are in that dark place that I was last year reader, take a step back, put strategies in place to live your life, fight for your rights, be who you are now and remember if someone cannot accept you as you are now, it is their problem not yours.

Life is for living, Live your life with Dementia, Whatever the challenges

The pother 4 articles are:

Coping Strategies – Day to Day

Coping Strategies – Going Out

Coping Strategies – In the Kitchen

Coping Strategies – Self Esteem

I am not paid or induced in any way to mention any products.

Coping Strategies – Self Esteem

This is the fourth of a series of articles about coping strategies, suggested by Truthful Loving Kindness.

I should say reader, at the outset, that I understand that they may not all be suitable for everyone, all our Dementia’s are different in some way and , you may not be able to use some of the things mentioned for whatever reason but I hope it will give a little insight into ways that we can live with our Dementia.

One important part of any coping strategy is to maintain the persons self esteem through their appearance and finding simpler ways of doing things.

Hair Washing – This can be seem claustrophobic, frightening, or recall the memory of childhood bath time or other event. There are shower caps and no rinse hair shampoo’s available like the one I use

HairShampoo

Liquid Soap – These may be easier for some to use.

Roll on Deodorant – These may be safer than aerosol versions

Bed Rail – One part goes under the mattress and gives the person something to hold onto as they get in and out of bed

Bed Rail

Leg Lifter – A simple device helps getting legs into bed or even a car that the person can do themselves if able

LegLifter

Grabber – If the person drops something on the floor they may be able to pick it up themselves

Grabber

Hair – A Hairdresser/Barber is essential, you may find a mobile one locally or the person may prefer to still go to the one they have used for years if appropriate.

Signs – Putting signs on doors to show what is in the room. Signs for toilet’s can be important as the person may get embarrassed asking where the toilet is.

ToiletSign

Raised Toilet Seat – For safety and also helps if they struggle getting on or off or they need help.

Raised ToiletSeat

I am not paid or induced in any way to mention any products.

Coping Strategies – In the Kitchen

This is the third of a series of articles about coping strategies, suggested by Truthful Loving Kindness.

I should say reader, at the outset, that I understand that my suggestions may not all be suitable for everyone, all our Dementia’s are different in some way and , you may not be able to use some of the things mentioned for whatever reason but I hope it will give a little insight into ways that we can live with our Dementia.

In the Kitchen it is all about safety and enablement.

Cooker – I cannot use the oven or hob as I wander off and forget that there is something cooking or turn the gas on without lighting it.

Microwave – For now I am able to get a meal out of the freezer when my wife is at work and put it in the microwave.

Electric Steamer- using an electric steamer with a timer, I cannot cut up veg but I can put them in the steamer.

ElectricSteamer

Slow Cooker – Good for doing many things including joints of beef.

SlowCooker

The steamer and slow cooker combined, enable me to take part in cooking a Sunday lunch, my wife prepares the veg, does roast potatoes, carving meat and Yorkshire puds but I can do the rest.

Cleaning Products – In the future my wife may have to move all cleaning products or put a lock on the door,  in case I confuse them with something to eat or drink.

Sharp Knives – I cannot use sharp knives, I cannot use them properly any more and previously I have tried to cut things with the blade upwards.

Ceramic Knives – You can get ceramic knives and they can be quite sharp. I’m not sure whether everyone would be happy using them, some might feel they are being treated like a child (remember reader, we don’t always think logically, we may have gone back to our childhood etc), my personal choice, thinking forward, is that it is safer for me not to use any sharp knives.

Perching Stool – As time goes on I may need a perching stool in the kitchen to enable me to continue to help in the kitchen, even if it’s just doing the washing up.

PerchingStool

Adapted Cutlery – In the future I may need adapted cutlery, not just for eating meals but to enable me to do simple things like make a cup of coffee whilst I am still able to do so.

Adapted Cutlery

Whiteboard – We have a whiteboard on the fridge door, for messages, reminders, shopping lists etc.

Cupboards – In the future, I may need photographs on cupboard doors to show what is in the cupboard.

With small changes a person with Dementia can still be empowered to be safely involved in the kitchen.

Next time, I will write about Self Esteem

I am not paid or induced in any way to mention any products.

Coping Strategies – Going Out

This is the second of a series of articles about coping strategies, suggested by Truthful Loving Kindness.

I should say reader, at the outset, that I understand that they may not all be suitable for everyone, all our Dementia’s are different in some way and , you may not be able to use some of the things mentioned for whatever reason but I hope it will give a little insight into ways that we can live with our Dementia.

Going out the house can present numerous challenges. I use technology to try and overcome some of it.

Technology

Microsoft One Note – I use this when I am going somewhere. I set up a page like this:

The Light Cinema

9, 24 The Moor, Sheffield S1 4PF. Phone: 0114 213 4531

TheLightCinema03

The Light Sheffield

TheLightCinema02

I then have the name, address, telephone number, a mini map and pictures of where I am going.

In the future as my Dementia becomes more challenging, my wife can use this app to show me where we are going maybe adding a picture of inside.

The Light Sheffield 0

Google Maps – The first time I went to the Dementia Cafe in Hillsborough, I got lost and wandered off in the wrong direction. I was off the mini map I had in “One Note” so I opened the Google Maps app which has GPS tracking on it and was able to find my way back.

Find Friends – (Phone only) It enables my wife to know where I am at all times and if I were to get lost, she would be able to hopefully guide me back or direct someone to find me. I know someone who is a long distance carer, who feels this will give them some reassurance.

Taxi App – (Phone only) The app enables me to pre-programme addresses and a debit card in it so for instance their is my home address in it, so if I got lost, could remember the app was there and could remember how to use it, I could find my way home that way.

Headphones – I have noise reducing headphones to off set things like traffic noise, voices etc. When I travelled to York, it could be disorientating/confusing navigating my way through the station, negotiating my way round people and contending with the noise from trains, tannoys and people talking. Busses can also be challenging along with the main road near where I live.

Other

Shoe Laces – In her blog today, Wendy Mitchel writes about a simple solution to tying shoe laces

Next time, I will write about In the Kitchen

I am not paid or induced in any way to mention any products.

Coping Strategies – Day to Day

This is the first of a series of articles about coping strategies, suggested by Truthful Loving Kindness.

I should say reader, at the outset, that I understand that they may not all be suitable for everyone, all our Dementia’s are different in some way and , you may not be able to use some of the things mentioned for whatever reason but I hope it will give a little insight into ways that we can live with our Dementia.

Technology

Memory Clock – I have a Memory Clock which doesn’t just tell the time as you can see below:

DementiaClock

It also has alarms with preset labels including Meals, Medication and appointments.

Phone, PC and Tablet  All have access to the same apps and they all work basically the same.

Most days I find it easier to put in new information via my PC, even though that can be challenging but the bigger buttons on the keyboard help. Some of the apps are:

Calendar – The Calendar app is where I put reminders:

for Birthdays/Anniversaries

to take my medication (I set this half an hour after the alarm on my Memory Clock)

to have meals (I set this half an hour after the alarm on my Memory Clock)

for appointments

when I’m expecting a phone call

and for anything else I may need reminding of.

Smart Watch – I have a cheaper version of a FitBit which apart from the time, tells me how many steps I have done, monitors my Heart Rate and my sleep and which links to an app on my phone.

Social Media – previous readers of my blog will know the importance of social media to me climbing out of the metaphoric dark hole my diagnosis put me in. To begin with, I made new friends and got a lot of support, now hopefully I am able to support others and raise awareness.

Shopping – There are many online shops and supermarkets and whilst maybe you should always try to get out to the shops you may not be able. The shopping, supermarket apps could also be useful for long distance carers as most allow alternative delivery addresses.

Busses – Companies like Stagecoach have an app where as long as you are near your bus route you can see where the next bus is.

Long Distance – Ordering ready meals through an online supermarket can be cheaper than using the companies that Hospitals recommend.

Presents – Places like Amazon will gift wrap a present so if you can’t travel for someones birthday, they will wrap it for you with a message for an extra charge.

Other apps – Banks, eMail, News, Text Messaging etc that can put most of what you need in one place.

Other

Front/Back Door – Fit Door alarm, chain and put up a curtain to cover the doors at night.

Night Light –  Plug a night light into plug sockets at top and bottom of stairs, there are LED ones that switch on when it starts to get dark and turns off at dawn automatically.

Calendar – Have a calendar on the wall with appointments/things you have planned.

Audiobooks – The person may no longer be able to read a book but may enjoy audiobooks.

Music – Even if the person cannot express a wish to listen to music, you may get a positive response when they do and can also improve mood.

TV/Films – Watching old TV programmes and Films can be a pleasurable experience for the person with Dementia.

Noise – Try to keep TV/Music volume a little lower unless the person has a hearing deficit, loud noises can be a problem.

Memory Book/Wall –  A memory book with photographs and newspaper cuttings can be a valuable reminiscence tool, as can having photographs on the wall. With a memory book you can put names, dates and how they are related, plus a little about the photograph if room.

Activities – Anything that the person is interested in or you can introduce them to, doesn’t have to be a physical activity.

Support Groups – Not easy to find but they benefit the person and their carer/family.

Carers – Make time for yourself, you need time away from the persons Dementia.

Involve family and accept help – No shame in this, does not mean you are a failure.

Next time, I will write about going out.

I am not paid or induced in any way to mention any products.

 

 

 

My First Friendly Dementia Cinema

Last Thursday started cloudy, but by the time my Daughter Evelyn and I got to town, the sun was breaking through the clouds.

We got there early so we sat on The Moor in the sunshine until it was time to go in.

We went in the building where the cinema was and I met my first challenge, the Escalator. It was running slowly but as I went to step on it, the escalator went faster, which was disorientating and then another escalator which did the same thing.

In the waiting area were a couple of friends from the Dementia Cafe’sand the DEEP UK group I go to, so we sat with them. The manager of the cinema came along and welcomed us all and he organised the tea, coffee, cakes and biscuits in a side area.

We moved to the side area and had a coffee, some biscuits and cakes, meanwhile a few more people joined us and when it was time we all moved into the cinema.

The screen was a decent size and the seats reclined, with a table between some of the seats. At the front there were flat seats, which could be moved and behind them were recliner seats that could be moved to accommodate wheelchairs, which was useful as some of the people there were in wheelchairs.

The Light Sheffield 0

The film was Seven Brides for Seven Brothers, which was poignant as its comes around birthdays of and anniversaries of, the passing of my Grandmothers and my Parents, who all liked that film.

SevenBridesForSevenBrothersPoster

When the film started the lights weren’t turned off completely which meant you could see the steps if you needed the toilet but that didn’t interfere with the film.

Sadly, there were only 18 of us there, I only found out about it from friends, which is par for the course in Sheffield as elsewhere, where the signposting of what is available to the Dementia community is poor.

I enjoyed going, the only other downside was that they forgot to turn the sound down a bit, which is one of the selling points of Dementia Friendly Cinema, hopefully they will remember next month.

I would recommend giving it a go, if you can find one locally and hopefully it will continue in Sheffield. The tickets at £5 were reasonably priced and if you have a CEA Card it’s only £5 for the person with Dementia and 1 family member/carer.

My Activities

This page brings together some of the activities that I have been doing since I finally began to live with my diagnosis of Dementia.

Apart from taking part in research, the main turning points were Twitter and the

A Good Life with Dementia course

which then led on to

My first trip to a Dementia Cafe.

First time at my Local Dementia Cafe

DEEP UK – Shindig Group

My First Friendly Dementia Cinema

Activities reader, no matter how small can help us to live our lives within our Dementia.

 

My Research

Since the beginning of 2018, I have been taking part in various research studies.

I would say reader, that taking part in research for me has been a form of enablement and has led me on to take part in other things.

This page is a listing the articles I have written about all the research I have taken part in.

AD Genetics” of Alzheimer’s study

The RADAR Alzheimer’s research study.

A Post-Diagnosis Support Study

Mobility Research at York University

“The Twitter Use of People Living with Dementia” Study

I would strongly recommend anyone with a diagnosis of Dementia, that is able to, to take part in research studies.

Any successful studies may not help us, but they may be of benefit to our children and grandchildren going forward.