Archive for the ‘Alzheimers’ Category

Grief and bereavement for people living with dementia

23 April 2014

                                                                          Guest post by Helen Findlay                                    

What is grief and bereavement?

Can we ever truly describe in words how it feels even though we may be feeling all manner of intense emotions and thoughts? Is there etiquette to it? Should we hide away from others? Should we not give in to public displays of grief whatever that may mean? Is there an accepted time limit to getting over the loss of someone close to you?

At times of grieving, it is possible to find refuge in literature to try and find something that may explain the void in the soul. Such as in the writings of great poets like Keats. Or in the incisive and resonating lines that capture complex and virtually indescribable states and feelings that come from authors like CS Lewis to be found in his book “A Grief Observed” (1961 Faber). Whether such writings offer comfort is moot but at least they may help to give some kind of frame to how we are feeling and assuage the notion that we are alone in our grief and no-one else has ever felt like this.

If it is difficult to assimilate and find ways of coping with the intense trauma that the death of a loved one can provoke, then how is it for someone who has dementia?  How does someone with dementia understand what has happened when someone close to them, perhaps their spouse, is no longer there?

Can they really comprehend what has happened?

Can someone with dementia express sorrow or be upset? If so, then how do they express it and how would others know that is what they are doing?

Family members and others who care for loved ones who have dementia may well have had to cope with this situation. Perhaps when caring for an ageing parent with dementia and their wife, husband or partner dies first possibly after many decades of being and living together. Suddenly the safe and enduring environment in which the person with dementia has been cared for is (more…)

Is the government prepared to take action? Carers Week report

14 June 2013

Carers Week logoWhen the invite came to attend a speed-networking event in Parliament with MPs I initially said no. Doing a return trip from the North East in same day is not ideal, early start and extremely late arrival home, all for a 2-hour event. However, I have always said that apart from our own MPs, those of us in the North East don’t get much opportunity to meet with other politicians, so I changed my mind and said ‘yes’.  I am now glad I did so, and appreciate the opportunity given by CarersUK and CarersWeek.

The train journey down started really well with an unexpected turn of events. A young man sat a few seats from me and I recognised him as Chris Ramsey, stand-up comedian and actor from South Shields. Those that know me will not be surprised at my next actions, which was to start tweeting him. As most people travelling were using phones, he was unaware who was relating to his twitter  followers what he was doing. Once I identified myself we spoke a little while. Talk about Big Brother is watching. Thanks for the laugh Chris, you were a good sport.

After this light relief it was over to Westminster for the event. I was met by Carers Week staff and introduced to others from various organisations, including Age UK and Carers Trust. Then it was to business.

As a Carers UK member my companions were Emily Holzhausen, Director of Policy, and Chloe Wright, Senior Policy Officer. They took turns to sit with me. Also helping oversee the event was Steve McIntosh.

It was explained how the event would unfold. As MPs arrived they would be guided to tables to speak with carers, how long for was unsure, depending on if they had any other appointments they needed to attend.

I had no worries about speed networking. Those that know Geordies will know we talk fast. My main concern was how much ground could be covered when the issues surrounding carers are many. It was not just about my family’s’ circumstances, but many others out there too, struggling to cope on a daily basis.

We managed to see 8 MPs, names as follows –

Carers Week blogIan Mearns  Lab
Guy Opperman  Con
Norman Lamb  LibDem
Peter Aldous  Con
Sheila Gilmore   Lab
Grahame Morris   Lab
Stewart Jackson  Con
Caroline Lucas   Green

As well as outlining how caring has impacted on my family, other issues discussed were as follows.

1.    The issue of the Children and Families Bill and the lack of parent carer rights in it, and the concern that they would be left behind. We also talked about when the Care Bill comes to the House of Commons, to stop carers from being charged for their own services and to put an amendment, which would prevent family and friends’ support being taken for, granted.

2.    We discussed the impact of welfare reform on carers, in particular the bedroom tax

3.    The benefits system, which causes huge difficulties in trying to juggle work and care.

4.    Lack of services that are right for the people we care for, e.g. lack of dementia services and support for younger people.

5.    Lack of investment locally in carers’ support e.g. carer’s dementia work.

6.    Concerns about cuts to services and reassessments of severely disabled people and the impact on the caring support and family

7.    Concerned about the cumulative impact of different changes and cuts that are hitting families hard.

8.    Problems surrounding Employment Support Allowance process

9.    Impact on disabled people, as well as carers, re closure of Independent Living Fund.

10.   Advice and information being hard to come by but being vital.

11.  Importance of strong local advocates within local carers’ organisations.

12.  The level of Carer’s Allowance and the failure of this Government and the last Government to reform this benefit.

With thanks to Ian Mearns, Grahame Morris and Guy Opperman for the North East presence, to Norman Lamb who stayed longer than intended and was late for his next appt, and remaining MPs for the interest they showed, and the many questions asked.

Journey back took several hours and it was past midnight when I got home, extremely tired but an enjoyable day.

So, following on from the Carers Week theme of ‘I’m Prepared to Care’ – my question would be – What next?

Many of us have already been caring for as long as we can remember. Governments past and present have failed to fully address many of the carer issues.

We need action now

Give us the tools to assist us in our caring roles. It may be finances, respite, services, equipment, understanding from employers etc. Investing in us now can only strengthen the foundation we provide that prop up both NHS and Social Services.

We are ‘prepared to care’ 

 Is the government prepared to take ACTION?

Rosemary

Carers UK blog

Alzheimer’s Society Campaigners Network

7 March 2013

Welcome to the first of our Alzheimer’s Society Campaigner’s Network Newsletters

There is plenty happening on the Alzheimer’s Society campaign front and lots to shmonthly newsletter will keep everyone

Our bulletin not only reflects the great work already under way among our campaignhopefully inspire new ideas and new initiatives.

The same applied to the Campaigners’ Network Away Days that took place at SocTuesday 5, February, and Bristol on Thursday 21 February. For those people unabyou can still receive copies of the notes and presentations by emailing sian.blackham@alzheimers.org.uk

In addition, two more events will be held later in 2013.

Read in full here –  Alzheimers Newsletter March 2013 FINAL

( an error in the newsletter as the Care Homes Toolkit is live and ready and can be located at

http://www.arena.alzheimers.org.uk/site/scripts/download_info.php?fileID=5807  )

 

 

 

 

What a difference a year makes – early Alzheimers

3 October 2012

Sharing our story is not something I would normally do. However, I hope by doing so other people can be directed to support and advice. – Rosemary

Most of us have certain dates we remember. From birthdays, anniversaries, passing driving tests etc. Yet for my family just now the date imprinted in our minds is August 12th 2011, the day we were told my husband had early Alzheimers. He was 51 yrs old.

He had been ill from work for several months but was for medical tests. He had lost a vast amount of weight, losing blood, no appetite and in severe pain. At the back of our minds, as you do, we assumed we knew what it was. His dad had been 59 yrs old when he died of bowel cancer, so our minds went in to overtime.

It was during these medical tests his consultant asked hubby if he had been experiencing any other problems, asked him some basic questions and from then on in we had a whole new lot of tests. This time for his brain. These continued long after his medical issues were sorted.

For our beloved NHS we have only praise. Over several months we attended 4 different hospitals, referred to 5 consultants. Community nurses/occupational therapists visited our home. We were given one to one counselling, just to talk through the illness and the services provided locally. The advice and support were second to none.

Medication (Aricept) was started, 5 mg for 12 weeks and then increased to 10mg. He remains on that dosage today.

Coming to terms with the diagnosis was difficult. Even now hubby talks as if it is happening to someone else. He does not really understand what lies ahead, but I do. Having over 30 yrs experience as a family carer I knew where to go for advice and support. Yet nothing had prepared me for this.

That is when Liz Williams from South Shields Alzheimers Society entered our lives. Liz supports those with Alzheimers, especially those providing the care needed. She guided us through, and always at the end of the phone/email.

So when Liz phoned a few weeks ago asking for a favour, my husband did not hesitate to say Yes. She asked if he would be willing to cut the ribbon for the North East Memory Walk 2012. He felt it was an honour.

After discussions with Debbie Keenan ( locality manager ) and Howard Keal (Press officer) we were all set. Our only worry was that the atrocious north east weather we have been having would hold off..and it did.

I will post again soon about how Alzheimers is affecting hubby, affecting us as a couple and as a family but for now it is all positive.

He is still the 16 year old boy I fell in Love with. The man who for over 36 years has been my rock, and more importantly, my best friend. It is time now to create new memories, ones that myself and daughters can hold on to in the years ahead.

The support received from online friends has been immense, for which I thank you all.

Memory Walk 2012

Scaffolder Sean scales new height  For Tyneside Memory Walk  Shields Gazette

Posted on Alzheimers Society website

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Never Will Forget – Ian Calvert

30 September 2012

Alzheimer’s Song. – Never Will Forget – Listen here

Taster of new song release in September
Written and performed by Ian Calvert, Produced by Andy Roo McKeller

 

 

Dementia friendly Communities – your views wanted

25 July 2012

Received from DementiaUK

On March 26th, the Prime Minister and Secretary of State for Health launched a new challenge on dementia, the aim of which is to deliver major improvements in dementia care and research. A key focus of this initiative is the creation of dementia friendly communities across England over the next few years.

In a recent poll only 5% said that society is geared up to deal with people who have dementia. This figure points to a massive challenge and a call to action across the whole of society to create dementia friendly communities that understand how to help. 

The Department of Health are therefore very interested in understanding the views of family carers on creating dementia friendly communities, in particular the following issues:

  • What could be done to raise awareness and understanding of dementia within communities?
  • What barriers do people with dementia and their carers face when wanting to participate and access services in their local community?
  • What changes should organisations make in order to become dementia friendly?
  • What should communities do to make their area more dementia friendly? Which bodies and organisations should be responsible?
  • What should be the main factors to determine whether a city, town, or village is dementia friendly?
  • What examples of dementia friendly communities are already going on? What changes or initiatives have made a big difference?

If you would like to share your views on this issue then please use the following link, where you can leave comments and also read the views of other people: http://dementiachallenge.dh.gov.uk/2012/05/28/dementiafriendlyquestion/ The site will be closed on 31st July, but already there are several comments which have generated discussion.

We do hope this is of interest to you and that you can take the time to go to the website. If you do respond then please let us know so we can invite you to similar opportunities in the future.

 

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I need your support to save local Alzheimers services

10 March 2012

Personal post

When coping with disability, illness, caring, have you ever met someone that you just know understands what you are going through, but more importantly knows what is needed to help you come to terms with a serious diagnosis. Someone who looks to the family as a whole.

I met someone just like the above last week. Her name is Liz Williams and she works for our local Alzheimers Society organisation. She visited our home for the 1st time, and in those few hours we received advice, support, understanding,  but also something more. She gave us Hope. This was to be ongoing long term support. That is now under threat.

Last night our local paper, The Shields Gazette, ran a story outlining how through funding cuts she may lose her job at the end of this month. Both local MPs, David Miliband and Stephen Hepburn, are onboard to try stop this happening.

The number of people with Alzheimers/Dementia is increasing at an alarming rate. It would be irresponsible to cut local services.

Having been involved with CarerWatch  for some years, this is only time I have used it in a personal capacity. However, I am asking for your help

You may or may not have experience of Alzheimers but you will know some one who has. Will you help me with this campaign to save Liz Williams job?

send comments to Alzheimers Society here   include any concerns you have in your area too. Help them build a wider picture of where the cuts are happening

you can tweet them  @alzheimerssoc  or our local paper @shieldsgazette

email the journalist covering this story –

gareth.crickmer@northeast-press.co.uk

Through the use of the internet I know where the online support networks are.  Talking Point  and Carers UK support forums  have helped me so much. However, it is vital that face to face local services remain.  It was one of the reasons why I supported Pat Onions and her petition and many other campaigns.

It will take 2 seconds for you to help raise awareness. Do a brief blog post, add to twitter and facebook. Share with family and friends.

These cuts are coming fast, getting deeper each time. This time it is affecting my family, it could be you next.

Enough is enough.

Rosemary

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PM urged to take action on social care – Carers UK

3 January 2012

Carers UK has joined other charities, care providers, health bodies, employers, and unions to sign an open letter to Prime Minister calling for cross-party action on social care reform

see in full here

Further articles can be found :-

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‘They know you are vulnerable’ – plight of older people in home care

23 November 2011

Most of the women from the care agency, were, in the words of a 78-year-old, “nasty and rough”. Whatever the carers’ demeanour, the frail woman in a wheelchair did not expect attitude to translate to violence that left her bewildered and powerless.

“Rather than say ‘sit in the chair’, they’d push me back into the chair, that sort of thing, and I didn’t like that … I couldn’t do anything about it. I can’t even walk and I think they know this you see; they know you’re vulnerable”.

However, such tales were depressingly familiar in a damning indictment of council-funded home care across the country – the Equality and Human Rights Commission found evidence of a “systematic failure” in the way we look after the elderly.

The commission’s report, “Close to home”, painted a disturbing portrait of poor treatment of the old in their own homes, which breached their human rights.

READ THE GUARDIAN FOR FULL ARTICLE

What’s your Christmas message to the Government? | The Hardest Hit

18 November 2011

 

The Hardest Hit are planning to send a giant Christmas card to the Government to let them know that we are not asking for gifts, but we do want our basic rights protected and the support to enable us to live independently and with dignity.

You can sign the card and leave your message by following the link below:

Sign the card!

What’s your Christmas message to the Government? | The Hardest Hit


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