leading the way in end of life care

Saga Magazine are letting their readers down!

2011-09-28T02:24:00.000-07:00

I find it quite strange that Saga magazine who target audience are over 50 years of age, do not publish anything on end of life or palliative care.

They believe their readers 'don't especially want to think about it until they have to'. They encourage their readers to say ‘if something happens to me’ rather than the preparation for the inevitable ‘when’.

They are letting their readers down by not considering the implication that lack of forward planning will have on their end of life, or the potential impact it will have on the family.

They advocate informed choice in all aspects of their lives and yet ignore the importance of informed choice at the end of their lives

BMA Awards for my book End of Life the Essential Guide to Caring

2011-09-22T04:38:00.000-07:00

Well the big news was that my book End of Life the Essential Guide to Caring was Highly Commended at the BMA Books Awards and also Highly Commended for the BMA Science Award for the Understanding of Science which surprised us somewhat. Apparently ‘This guide impressed the judges with its practical focus and sympathetic style’ anyway I’m not complaining!

I have been effectively out of work since the government cutbacks, its bad news for me but also for all the carers who are not getting the training and support they need when working with people with dementia and end of life.

Frustrating is an understatement.

In the meantime I qualified as a Bereavement Counsellor and am volunteering with Cruse Bereavement Charity.

Will also be writing another book. I'm back to blogging!

Watch this space!

We always try to comfort those in distress

2011-03-24T11:53:00.000-07:00

When we know someone is in distress our immediate reaction is to comfort them, perhaps to tell them that things will get better, it won't always feel this bad.

Often we try to 'fix' them, and ask them if they have thought about X, Y or Z.

However, if we really want to comfort someone who is distressed, we could allow ourselves to listen, without judgement, without trying to fix them, without looking for ways we feel they could improve their lives.

An empathetic ear is the greatest gift we can offer - and we have two to spare.

A passion for life and living - can keep you alive and living!

2011-02-21T02:12:00.000-08:00

I have just returned from a short holiday in a warmer climate.

There I met a man who has cancer and was given six months to live - seven years ago.

He said when he was told he only had months to live he went to the beach every day and cried.

After a while he decided that instead of crying in the sea he would start to swim in it and he would swim out so far that maybe he wouldn't be able to come back.

Instead of that he found a passion - for the sea and for swimming.

For the last seven years he has spent hours swimming whenever the sea conditions permit - and he makes sure that he is able to get back to the shore.

His passion has not only fuelled his desire to live but it has given him a quality of life he never knew before.

Without a passion we are living. But are we really alive?

Children and funerals

2011-01-26T09:39:00.000-08:00

I was on the BBC Sussex radio last week talking about children going to funerals - the question was put to me whether they should be allowed to go or not.

Half the country seems to be talking about this since it became a subject of conversation on the Archers.

I said of course they should. Children have a right to say goodbye to the person who has died, they have a natural acceptance of death if they haven't been influenced by the adults surrounding them.

Of course you cannot force children to go if they don't want to - but should allow them if they do

I said we cannot protect our children from losing people they love but we can protect them from the complications that will arise if they are not able to say goodbye.

Celebrations

2011-01-11T02:20:00.000-08:00

Ten days into 2011 and I have celebrated a 21st birthday party, a 60th birthday party and Dawn's return to her family.
All causes to rejoice.
At each occasion I have felt unusually emotional.
Perhaps as I witness more and more sorrow and loss it makes me appreciate the happy and joyful moments more.
We should not forget to celebrate the happy occasions, make the most out of each and every one of them.
So we can retrieve those precious memories when we need them.

New Year new journeys

2011-01-01T04:27:00.000-08:00

A New Year.

365 new journeys ahead.

We don't know where this year will take us, and perhaps it is better that way.

Some of us will have a different voyage and won't be here to celebrate the beginning of the next year.

Wherever your journey takes you, I hope that it is one that is accompanied by people that you love and people that love you.

Communities again!

2010-12-27T04:06:00.000-08:00

Just returned from 24 hours with Crisis for Christmas the Charity that care for the homeless and house them for 7 days over the Christmas period.

A sea of people with one thing in common - and for many of them that is all they have in common.

But within that week small communities become apparent.

The alcoholics support each other and many came to the centre together, the Eastern Europeans - each year more and more - stay together as a group with a shared language and culture.

Stories emerge of how each each group find ways to support those in their community.

The hardest hit are the more recent additions to the street.

They have yet to build a community and they are often the ones who are suicidal. Who cannot believe that life has brought them to this point. An employer who cannot pay them, a wife or husband who betray or beat them, lives turned upside down in a matter of days and who have no where else to turn.

These are the people who stay with you and you never forget them - always wondering whether they found a way out

We are so dependent on each other. Sometimes communities are tied together by invisible threads only apparent when they break

Communities who support each other

2010-12-21T04:29:00.000-08:00

Two weeks ago on Saturday there was an unexpected death. Graham, a man who lived in our small very close community. The news travelled quickly and everyone came together to support each other.

It was a community in mourning. A community that cried together and shared their food and ate all their meals together for the remainder of the weekend, so that no one would be alone and feel overwhelmed by the shock and subsequent grief.

A community that travelled to the funeral together, and then celebrated Graham's life with tears and laughing and dancing to the music that he most loved, remembering a man who had been generous and kind and had lived every minute of his 57 years and will continue to live in the community because he is, and will always be, remembered with love.

Dawn is going home and sent a text of thank you to all who supported her through her crisis. A different community spread out over a wider area, but who sustained her with practical help and ‘very real kindness’ so that she could concentrate all her energy on getting strong enough to fight the blood disorder that threatened her life.

We are stronger when we stand together. The benefits of a social group are well documented. Isolation brings loneliness and loneliness brings depression and the downward spiral that accompanies it.

Reaching out to each other is a win win situation. Building a small community whatever that means to you, can only reap benefits. And you never know when you may need to access its' strength.

Good news and phobias

2010-12-18T07:06:00.000-08:00

Yes good news. It looks like, all being well, Dawn is going home on Tuesday. The end of one journey and the beginning of another. The relapse rate is 40 percent in the first year so Dawn is going to learn to live with this.

She is also going to learn to live with giving herself daily injections. Only last week I was half joking with a friend and saying that I was so phobic about having an injection that given the choice between death and an injection I would consider death a good option. My greatest fear is the needle. I am not afraid of death. But Dawn's situation has made me reconsider. How would I choose given her circumstances? I doubt I would choose death.

We all have such different fears. Dawn and her partner have two children, have been together for twenty years but have not married. Her partner has commitment phobia. Realising that he might have lost Dawn has helped him to face his phobia and marraige is in the air.

When circumstances force us to face our fears we have to reconsider our priorities. To allow our fears to rule our lives - or to allow our lives to alter the face of our fears .

Good days, bad days

2010-12-15T04:12:00.000-08:00

Good days, bad days mean different things to different people.

For me a good day is going to work and training a group that love their role in the care sector and 'get' what I am talking about and seeing the love that they have for the amazing work that they do. At some point during the day we are totally in tune with each other and we all come out 'high' because we have inspired one another to do better in our differing roles.

For Dawn a good day is a day when her platelets are up and her potassium follows. She still has no news about going home, is still positive and is still an inspiration and somehow her good day and my good day are linked by the word inspiration. Not a word often found in the health and care sector.

Good news about Dawn and some thoughts about the power of our thoughts

2010-12-14T02:03:00.000-08:00

I didn't blog yesterday about Dawn because her platelets dropped and I was sure that was temporary - which it was. Today they are up to 147! Ah the power of positive thinking! And there isn't a more positive and powerful person than Dawn!

There is so much evidence that the immune system is strengthened by positive thinking. It's very hard to be positive when your body seems to be telling you it 'wants out' and your spirit is shouting 'No! Not now. Not yet!!' Everyone tells you to stay positive and inside you think 'easier said than done' Which it is.
But it is not impossible.
We cannot always choose what happens to us but we can always choose how we react to it.
That is our ultimate freedom.

Dawn again ....

2010-12-11T00:31:00.000-08:00

Dawn is still fighting for her life. She told me about an incident in the shower when her 'neck line' fell out, about blood everywhere and the indignity of having doctors and nurses jumping on her naked in the shower. If you knew Dawn you would know that she has such inner dignity and how hard that would be for her - although she made it sound so amusing.
I have to believe that she will come through. Her blood platelet count is 71 and it needs to be 150.
I know she will pull through.
I find myself in a strange situation. I who co wrote a book about end of life is now communicating about the possible end of life with her end of life coach! What an irony.
I have a certain suspicion that this is not entirely coincidence. That when I chose Dawn to be my Coach that there was an unknow force behind that choice, but maybe not, maybe these are just the ramblings of a witness to an unfair struggle between life and death and trying to make sense of a situation that makes no sense at all.

Day two!

2010-12-09T03:04:00.000-08:00

Good news about Dawn, she doesn't have cancer, and is fighting to come home for Christmas day. There is a very thin veil that separates life from death. It is there so we can live our lives without having to face the fact every day that we are mortal. But now and then that veil lifts and life is never the same again.

leading the way in end of life care: Welcome to my blog!

2010-12-08T05:41:00.000-08:00

leading the way in end of life care: Welcome to my blog!: "Welcome to my first blog. Today I spoke to my company's End of Life coach Dawn, she is 40 and fighting for her li..."

Welcome to my blog!

2010-12-08T05:22:00.000-08:00

Welcome to my first blog. Today I spoke to my company's End of Life coach Dawn, she is 40 and fighting for her life in a London hospital. She played a big part in changing my life a couple of years ago when I was writing my book (End of Life the essential guide to caring) and at the same time considering leaving my partner of 10 years. I guess the relationship was coming to the end of its life too and I needed someone to help me make sense out of the chaos, to help me to find my voice and my feet and at 55 make the changes that I needed to make and she did this. She did it with compassion and humour and empathy and I was so impressed with her that I asked if she would be the end of life coach for ELManagement, my company, and she agreed. Two weeks ago after recording for BBC Berks she collapsed and now she is fighting for her own life. She has a rare blood disease. I told her today that I was sure she would pull through and use all of her experience to help those facing the end of their lives. I am overwhelmed with the irony and injustice of the situation she is facing and at the same time I am aware that there are so many people out there who are facing a similar injustice, who are talented, powerful and full of life and love and so much to give and yet are facing having all of this taken away. None of us can answer the questions that this situation throws up and platitudes just don't do it. So what does help?? Talking? Sharing? Sending support? Showing you care?? What do you think?