Tuesday, 29 October 2013

My poem for Mum - living with dementia

Click image to enlarge

To find out more about the Purple Angel click http://www.purpleangel.org.uk

Book review - The Essential Guide to Avoiding Dementia

understanding the risks
by Mary Jordan

When I was asked to review this book, I was a little concerned about part of the wording of the title – “avoiding dementia”? Is that really possible?

Certainly maintaining a healthy lifestyle can help. But can it actually prevent dementia, or merely delay onset? As is very clearly stated in the book, dementia is not part of the ageing process, and that certain types of dementia can develop in younger people. In many cases dementia can be caused by other underlying conditions. Taking action to prevent or control these conditions, could well help to avoid dementia.

However, the book doesn’t just cover possible ways to avoid dementia, but also what to do if it is diagnosed. This is certainly helpful, both for the person with dementia, and their families.

Mary draws upon research carried out around the world, to illustrate how certain factors such as healthy lifestyles, exercise and diet, may help reduce the risk of dementia and cognitive decline. Other, less obvious factors that may also contribute positively towards avoidance are good levels of education, variety in lifestyle, social contacts and leisure pursuits. She also covers the effects of a number of factors which may increase the risks.

Where dementia is diagnosed, exercise again plays an important role, though from personal experience as a carer for my Mother, who has vascular dementia, and very limited mobility, this isn’t always possible. Maintaining a nutrient rich diet can also help, and the use of full-fat milk, eggs, cheese, butter, and oily fish on a regular basis is encouraged. Reading this was heartening, as when my Mother was discharged from hospital in late 2012, having suffered a serious UTI, it was my intention to wean her off the food supplements she had been prescribed. This I did gradually, and she now enjoys the same, non-processed, hearty meals as me.

The effect of a head or brain trauma as a contributory factor is also investigated, as is stress, psychological trauma and even PTSD, all of which appear to increase the risk of developing dementia. Illnesses and diseases - such as heart and vascular disease and diabetes, along with many others - can also be a trigger. Treatment and control of these conditions may again help prevent, or at least delay the onset of dementia.

The last chapter covers actions to be taken when someone is worried they may be developing dementia. These range from what to do and who to see for diagnosis, and how to maintain as normal a lifestyle as possible after diagnosis. The chapter closes with a simple statement, perfect for both the person living with dementia and their family – “get the most out of life everyday”. A wonderful piece of advice, and something I personally follow on a daily basis. Enjoy every moment, every smile, share the laughter, and share the journey.

Also included is a glossary of terms used, and an appendix containing a description of different parts of the brain, how they may be affected by dementia, and what some of the symptoms and effects might be.

For those wanting to know more about dementia, the underlying causes, how to try to avoid it, or how to live with it, this book is certainly a good reference point. Whilst not everyone will develop dementia, and some may well avoid it using the advice provided, some may not - there is however, sufficient information to be of use to those who are unfortunate enough to be diagnosed with the condition, and also to help their families and carers acquire a greater knowledge and understanding about dementia, and help their loved one lead as normal a life as possible.

Mary Jordan has experience on both sides of dementia care - as a carer to friends and relatives, and professionally through her work with a national charity; she daily supports people with a diagnosis of dementia, together with their carers. For many years she worked for the National Health Service and has also served in the Armed Forces. In addition to articles and papers published in medical, nursing and social care journals, and general magazines, Mary is also known for her books The Essential Carer's Guide, The Fundholder's Handbook and the award winning End of Life: the Essential Guide to Caring.


Saturday, 26 October 2013

Caring for Mum - my story - blogtalkradio interview with Denise Brown

I took part as a guest on blogtalkradio with Denise Brown from Chicago, Illinois, in October 2013. Denise runs http://www.caregiving.com/ in the States.

We talked about my caring role for my Mum who has vascular dementia. The interview is available at the link below


Worthing - Working towards a dementia friendly community

Tuesday 22 October 2013, saw the first meeting of the Worthing Area Dementia Open Forum. Unfortunately, due to my caring duties, I was unable to attend. I did however contact the organisers beforehand, asking to be kept up to date on any developments.

I now have the minutes from the meeting, and will discuss here some of the matters arising.

35 people attended the forum including representatives from the Alzheimer’s Society http://www.alzheimers.org.uk/, Guild Care http://www.guildcare.org/ and West Sussex County Council http://www.westsussex.gov.uk/ along with carers, people living with dementia and health and social care professionals.

The opportunity for people to become Dementia Friends or Dementia Champions was raised. Dementia Friends http://www.dementiafriends.org.uk/ is an initiative funded by the UK government and run by the Alzheimer’s Society, with the primary aim of creating dementia friendly communities.

Some of the issues raised at the meeting included:

Doctors (GPs)
From personal experience many GPs and their staff, have little understanding of dementia, yet for many, GP’s surgeries are the first point of contact in the UK health care system. Improved dementia awareness in GP’s surgeries should be made a priority.

Information about services available
A need was identified for printed information about all of the local services available to those living with dementia and their carers. This information would of course have to be kept up to date, all too often such information is out of date with incorrect contact details, or signposting services no longer available.

There is certainly quite a lot of printed information available for carers, including the West Sussex Care Guide, which contains useful information and a directory of services available.

Future representatives from other organisations
Suggestions were put forward for representatives from other local organisations to attend future forum meetings, these included; a GP lead for dementia, the Salvation Army, Carers Trust, local theatres, local cinemas, the Red Cross, ICIS (part of the Helplines Partnership finding help for people when times are difficult), local leisure centres, coffee shops, the Rotary Club and the local Freemasons.

Being from a military background, I’d also add SSAFA and The Royal British Legion, to represent ex-service people and their families.

Another suggestion from a Twitter friend would be Sussex Police, who are already supportive and well informed about dementia.

From my own point of view, I think the more local organisations and businesses represented the better. It is important that employers are aware of the difficulties sometimes faced by working carers. It was such a lack of understanding and flexibility that caused me to give up working, in order to care for my Mum.

Dementia friendly shops and taxis
Shops and taxis identified as dementia friendly to display stickers to let people know. A similar scheme is currently operating in Torbay, under the Torbay Dementia Action Alliance http://tdaa.co.uk/ , encouraged by the inspirational Norman McNamara (Norrms) and his wife Elaine. Norrms has Lewy Body dementia. As part of this alliance, and inspired by Norrms, the Purple Angel http://www.purpleangel.org.uk/ has been adopted as a symbol of hope for all those living with dementia. In fact, the Purple Angel has been adopted in many places around the world.

Perhaps Worthing should do the same.

The use of Social Media
Although the minutes confine this to “spreading the word, for things such as meetings”, many of us who regularly tweet on Twitter, are already doing it! We “spread the word” about dementia across the world. I could list a whole raft of people I’ve met on Twitter “spreading the word”, so for anyone interested, it would probably be easier to give my Twitter name, @ZkidooKreativ, so anyone can then discover the many who are indeed “spreading the word”, including Norrms!

Carer recognition
Encouraging services and business to recognise that someone is a carer - this is certainly a problem, many of the businesses and services carers have to deal with, are completely unaware of what being a carer really is like. This also, as already mentioned, involves carers who are also employees. Refreshingly, I recently took part in an on-line survey for Argos, the section asking about employment actually listed “full-time carer” – well done Argos! At least one company recognises us!

Unfortunately other companies don’t! Very recently I was in contact with Sky, due to problems with my phone line and broadband. Whilst trying to be helpful in resolving the issue, I was kept on the telephone for over an hour, even though Sky had been informed in an email regarding the same matter, that I WAS a full-time carer. Had my Mum needed any help during this time, which fortunately she didn’t, I would have had difficulty in explaining to the Sky representative that they would have to call back. Why? Because the representative was totally unaware of my carer status.

Singing for memory groups
Many of us who care for someone living with dementia, know of the value of music as a tool both for the memory, and for helping to calm and reassure. I won’t add anything further here, as I have already written an earlier post on the subject – http://design4dementia.blogspot.co.uk/2013/07/dementia-music-and-emotions.html

Men in Sheds
Men in Sheds was an AgeUK pilot project that supported older men who wanted to get together, share and learn new skills - all in the welcoming space of a ‘Shed’. There are now several similar groups around the country.

Men In Sheds Worthing http://meninshedsworthing.org.uk/ is about a larger version of the typical man’s shed in the garden, a place where he feels at home and pursues practical interests without worrying about making a mess. Men In Sheds offers this to a group of men where members share the tools and resources they need to work on projects of their own choosing at their own pace and in a safe, friendly and inclusive venue. It is a place of skill-sharing and informal learning, of individual pursuits and community projects, of purpose, achievement and social interaction. A place of leisure where men come together to work.

The activities usually involve making or mending in wood (e.g. carpentry, wood turning, carving, and furniture renovation) and may include activities as varied as tool renovation and upholstery. Reclamation, reuse and restoration feature strongly in what they do. The essence of Men In Sheds is not a building, which some don’t have, but the network of relationships between the members.

I have to admit, it’s probably not a group I’d join myself, but I am sure it proves helpful to many.

The availability of information about dementia
There is of course a plethora of information about dementia on the internet, from a variety of different sources, some reliable and some not so. The Alzheimer’s Society http://www.alzheimers.org.uk/ has quite a lot of information on its website, but something highlighted at the meeting was the simple fact that the Alzheimer’s Society doesn’t make it clear enough that its services are for all types of dementia and not just Alzheimer’s Disease.

At the time of Mum’s diagnosis (Vascular Dementia), I was completely unaware that the Alzheimer’s Society did indeed cater for all types of dementia.

Whilst Alzheimer’s is the most common form of dementia, there are many other forms of the condition. Across the world, many organisations use the umbrella term of Alzheimer’s to identify themselves. This, unfortunately, is often unhelpful, especially in the early days of diagnosis, both for those with other forms of dementia, and their carers. A simple name change could help, such as the Alzheimer’s and Dementia Society, instead of the Alzheimer’s Society, in the case of the UK organisation. Just a thought.

Local on-line dementia forum
Whilst this could work, it would rely on a reasonable uptake by potential users. Local forums can often exist with no-one posting on them for months at a time. There are however national forums already in existence, where threads can be created for a more local feel, and where people from a specific area or region can share thoughts and information. Generally, sharing is pretty much on a national basis, giving access to far more information, and sharing experiences with a greater number of people who find themselves in similar situations.

Personally, I use the Carers UK Forum http://forum.carersuk.org/ regularly, and whilst not all members are carers for someone living with dementia, quite a few are, and there is a specific group of threads dedicated to dementia.

The Alzheimer’s Society also has its own on-line forum Talking Point http://forum.alzheimers.org.uk/forum.php . I’ve posted there a few times as well.

Educating younger people about dementia
This is certainly an area that should be given serious consideration, and it has recently attracted considerable interest on a number of Twitter chats. I won’t go into any great detail here as a Twitter friend has already covered much of it at http://karims3d.com/2013/10/17/dementia-friendly-schools-%e2%96%b7-a-primer-to-anti-stigma-campaigns/

Gathering momentum
Whilst this was the first meeting of its kind in the Worthing area, it already indicates that there is a hint of what could hopefully be a strong movement to create a dementia friendly community. Let’s hope it continues and gathers momentum.

Friday, 18 October 2013

Dying with dignity

This is a subject close to my heart. I experienced death with dignity in 1994, when my Father lost his long battle with cancer. Right up until his last few days, he fought against multiple myeloma and cancer of the oesophagus.

After diagnosis, and a little research, Mum and I knew Dad had a maximum of two years to live. Yes he smoked, hence cancer of the oesophagus. The multiple myeloma, his primary cancer, was a different matter - no-one knew what had caused that. Some specialists even asked if he’d been anywhere near some of the atomic detonations during the 1950s. He’d been a soldier during that time, right up until the early 70s. As far as we knew, he hadn’t, and that’s what he said too.

Although Dad slowly became visibly weaker during his last few months, he was still active, and through the pain, still tried to maintain as normal a life as possible. As a proud man, it was beyond him to ask for help, unless it was really necessary.

Like my Father, I also chose a role in the military, albeit in my case, part-time. I joined what is known as the Territorial Army here in the UK, very similar to the US National Guard. On returning home to my parents’ house after a training evening, I found Mum struggling to help Dad to the toilet. She wasn’t strong enough, and was relieved at my arrival.

My Dad looked at me and said “I’m knackered son”, he was clearly in distress, and needed assistance in order to get to the toilet, which I was able help him do.

By the following morning, a Thursday, it was clear that his life was coming to an end, the words he spoke to me the night before, were the last I would hear.

He slipped into a coma, and his body slowly started to shut down.

The Doctor came to visit that day, and said quite clearly that it wouldn’t be long now. He also left a large bottle of diamorphine, in order to relieve any pain, stating that we should administer a dose as and when needed.

For most of the day, Dad lay in bed peacefully unconscious. By the evening however, things began to change, his breathing became shallower, and he lost all bowel and urinary control. Thanks to a neighbour who worked in a care home, we were able to keep him clean, and to a degree, comfortable.
Diamorphine was administered throughout the night, when needed, as he slowly began to slip away.
The following morning, his sister came to visit him, and sat with him for about an hour.

After I’d taken her home, a short half mile drive away. I went back, and checked on Dad. His pulse was slow and weak, and his breathing shallow. I called Mum in, and said that I thought he was about to go.

As we stood there with him, I felt his last two pulses, and then he left us. He left this world in the company of the two people he cared about most - Me and Mum. We were with him at the very end. Just the way he would have wanted it to be. That’s death with dignity. He didn’t want his sister there - and just hung on until the time was right.

Yes it hurt, but in a strange way, it wasn’t just a relief for Dad. I felt relieved. His suffering was over, yet there was something else. The moment of death and sharing it with him made it so much easier to accept. Mum and I had a big hug, shed a few tears. But we knew he was now at peace, and would suffer no more. We had shared in his life, and at that vital moment we shared in his death. Something I can still celebrate. Yes, celebrate!

My Dad died in such a way that it made it easier for Mum and me to accept it, and to remember, still vividly, the moment he passed away.

That brings me on to the next part of this post – assisted dying. Should it, or should it not be legalised?

Personally, I have pretty strong views on this subject, and that is thanks to my Dad.

As stated earlier, we were able to administer diamorphine to Dad, as and when he needed it, in order to relieve pain. That is what we did. Yet, diamorphine can have a secondary effect - it can also assist in the dying process. This secondary, or double effect, is legal in many countries around the world. So long as pain relief is the primary aim, if death is a “side effect” then that’s acceptable.

There are of course other methods of “accelerating” death, many methods of which are also regarded as perfectly legal in many countries. Many care pathways, including the somewhat controversial Liverpool Pathway here in the UK, allow for the withdrawal of vital medicines, fluids and nutrients when someone is judged to be approaching end of life, or that the person concerned is in a vegetive state. Often the problem here is who actually makes the judgment. Clearly, the patient by this time - is no longer able to make that decision for themselves.

As individuals, as long as we’re able to make such a decision, whether we live or die, should be our choice. If assisted dying was legalised it would enable perfectly healthy people to state quite categorically what should happen if they were suddenly, through illness, or accident, placed in a situation where their life would be unsustainable without extreme medical intervention.

Here, I’m not talking of life changing events, where initially the casualty may feel they have lost the will to live because the psychological trauma of dealing with a life changing injury is too much. This is about whether there is a life to be lived or not. A life without pain, a life without suffering, a life that is not cruel. Where someone feels their life, through such traumatic events has become unbearable, and unliveable, they should at least be given an option, a simple yes or no scenario. Their personal choice will be based around many factors, and any conclusions or choices should not be taken lightly.

Life is a gift, but sometimes that gift can be too much to bear. Many people take their own lives each year, for a whole variety of reasons. Able bodied people can take their own lives whenever they want. Why condemn someone who feels life is no longer worth living, yet through disability or inability through mental or physical factors, is unable, thanks to outdated laws, to make that decision.

For some, death is a release. A release from the suffering of this world, a relief from pain. Many of us are strong enough to face many things, including death. A rifle barrel in your face could mean impending death – how would you deal with it? Some would fight, some would collapse in fright, yet others would calmly accept the outcome.

Death is never far away, and those close to it should be given the choice of whether they wish to continue to live, or not.

Personally, I believe that where a person is at the end of life, and that life has now become unbearable, through pain and suffering, they should be allowed to make that choice. Or, be given the choice to make that decision in advance.

We have donor cards, why not have an end of life card, stating quite categorically that person’s wishes when that time comes? It can still have an opt out clause, if needed. This would help alleviate many problems currently encountered between relatives and physicians, when deciding which treatments to continue and which to withhold. Even without legalised assisted dying, this would still work with care pathways and double effect scenarios.

Just a thought!

Tuesday, 8 October 2013

Stigma and the male caregiver! Time to ignore and overcome...

OK - in at the deep end - I care for my Mum, I’m male, and single – suddenly, society thinks this is wrong! Why?

Let’s get straight to the point, I’m unmarried! Therefore elements of society believe I must be gay! (No offence to any gay readers intended).

Yet ask one of the agency carers about a subject I brought up this afternoon – when, in the past, I visited Amsterdam’s red light district, or Hamburg’s Reeperbahn. Sorry to be so forthright, but some people would label me as being gay, which I’m not, though there are many gay men, and indeed straight men, who would undoubtedly carry out the same caring role as me.

This is not about sexuality, or discriminating against people who care. This is about why we care. We care, because we love – period! Don't judge us on sexuality, or the reason why we choose to care. That is our choice - a choice we are free to make.

My relationship with my Mother has always been close, but such a relationship doesn’t define anyone’s sexuality. Society however seems to have a different view. A view which, until recently, also affected me. I wouldn’t admit to being a full-time caregiver for my Mum, because I was afraid of how I would be judged.

Things have changed!

Why? Because I’m proud, and happy to be so. I’m now confident enough to admit to others what I do, because I’m proud to be an advocate for my Mum, myself, and others in similar circumstances. Being a caregiver to someone you love, is possibly, aside from having a baby, one of the most rewarding roles you will ever encounter in life. Ultimately, because of the final outcome, it can also be one of the most painful.

My life has been varied, and by comparison to others, exciting. My Dad was in the army, we lived in Germany for much of my younger life, including four years in West Berlin, at the height of the Cold War, and Northern Ireland, at the start of the troubles.

I also served for twenty six years in the Territorial Army (UK equivalent of the US National Guard).

Taking all of this into consideration, why are male caregivers regarded in such a way?

Caregiving has for far too long been regarded as a female role. Everyone has the capability to care, regardless of gender - nature only too clearly proves this - from the humble male stickleback, caring for his offspring, to the big apes, where the alpha male not only continues his genetic strengths, but also protects his hareem and offspring.

Role sharing within human society has existed since the days of hunter gatherers - the industrial revolution changed much of that. The male became the breadwinner, whilst the female stayed at home, to care for the family – very much a recent concept, in the course of human history.

Too many of us are now willing to place the care of elderly parents in the hands of others, rather than doing it for ourselves. Why?

In many ways, society dictates that they should.

Whilst as a single man with no dependents, it is easy for me to become a caregiver to my Mother. The same is not the case for a married man, with a family, wishing to do the same. This is wrong - we all have the right to care. To care, for those we love, regardless of who they are.

As we get older, and as more of us survive into our eighties, nineties and beyond - there will be an increased need for family caregivers, male or female. Age does not discriminate, nor should society’s perception of caregivers!

Whether you're a male or female caregiver, it's time to speak out! Tell the world we care! We care for the ones who once cared for us! We care for those who, because of an act of nature, were never given the opportunity to care in the first place, or to make that choice. We care - period!

Once a caregiver, always a caregiver!