All posts in End of life

Planning End of Life Care

As its Dying Matters Awareness Week I would like to talk to you about the importance of getting your elderly loved ones to make plans for their end of life care. I have seen what happens when people don’t plan for having an accident, a stroke or an illness such as dementia, which leaves them unable to make decisions such as whether they want life prolonging treatment and how and where they would like to be treated.

This issue is very important to me and although I will be unable to control what happens to me if I find myself in this situation, I want to choose how I live the end of my life and how my funeral is conducted. I have therefore taken out a Lasting Power of Attorney for both my property and affairs and my health and well-being. I am also  one of the 3 in 10 people who have made a will. Why on earth would I want to leave my hard earned dosh to the Government?

Holy spirit dove flies in blue sky, bright light shines from heaven, christian symbol, holy bible story

I would much rather address these matters while I am relatively young and have no intention of dying, although  like everyone else I have no control over that whatsoever. If I leave it too late and am no longer able to make my own decisions, I will not be able to make these plans myself.  Now I can relax, forget about the Lasting Powers of Attorney which will only be able to be used if I am unfortunate enough to loose my marbles so there is no danger of my sons (who are my attorneys)  selling  my home and emigrating with my loot.

Although it is possible to download the LPA forms and will template  from the Internet  and do it yourself I chose not to do this as unintentional mistakes can be made by not considering all eventualities. If you have made your own will and LPAs this only comes to light when it is too late to do anything about it. So find yourself a good solicitor. You will be glad you did.

Here is an example of a situation  I remember from my days of working on night duty at the local hospital. that illustrates my point nicely. I have made up their names for anonymity. To be honest I can’t remember them anyway!

Example of  how failing to plan can cause conflict in a family

Steve lived near his father and they had an especially close relationship. When his father had a stroke Steve was asked whether or not he wanted his father to be resuscitated if his condition deteriorated. Steve told me that his father valued his quality of life and felt that if it was seriously compromised, he would not want his life to be prolonged. However, his brother disagreed and as you can imagine, the situation could have caused a serious conflict within the family. Luckily his father’s condition improved and a decision did not have to be made.

Another example is a personal one. When my father became terminally ill, I knew exactly what his wishes were and had power of attorney to back up decisions I made on his behalf. He died peacefully at home listening to his favourite music, being assured it was OK to let go and reassured that my brother, sister and I would look after our Mother. I cannot stress enough the comfort it gave me to know I was carrying out his wishes just as he would have wanted.

A letter of wishes

I have one last thing to do to ensure my choices are taken into account, I am writing a letter of wishes to be go with my papers, so that my sons know exactly what I want to happen if I have an accident become seriously ill or lose the ability to make decisions for any other reason. Also where and how I want to live if I am unable to make my own choices, how I would like my body disposed of at the end of my life and what I want to happen afterwards.

We are all going to die

As a society we tend to avoid talking about these matters. However, death is a part of life and if they are faced, discussed and planned for we can forget about them, know our wishes will be heeded and acted upon and that we have saved the person or people we have left behind the responsibility of guessing our choices. Don’t leave it too late

Millions leave it too late to discuss end of life wishes. Don’t let an older person you care about be one of them.! The following website offers lots of good information to help you. Dying Matters.Org

Saying Goodbye To My Parents

My father passed away in February 2012, the day after his 90th birthday. Until his latter years when his health failed, Dad lived well and never failed to be grateful for it. Mum died recently, the day after Mother’s Day on March 16th 2015. My parents’ deaths, after important and memorable dates, have and always will be milestones. I could never have imagined the intense pain I have been feeling and the tears that have flowed since my Mother’s death, often coming out of the blue with no obvious trigger. I felt orphaned, abandoned and totally bereft.

I just never anticipated how much my second parent’s death would bring extra baggage or the strength of loss I would feel for the unconditional love that I was lucky enough to be given by my parents. It feels as though I have lost my family — the family that I grew up in. Although they haven’t done so for years, they will no longer be around to share their wisdom when I have a problem and I feel propelled into a new level of adulthood.

Mum’s demise has triggered grief for other losses, reactivating my husband’s death and more recently, my fathers. There was so much to do after Dad died, including selling their property (Mum had moved into a care home) and preoccupation with Mum’s needs and at times challenging, behaviour. Her death has plummeted me into what feels like a bottomless pit of emotion as I struggle with grief that I had not previously fully acknowledged. It seems grief comes when we least expect it. FullSizeRender

Despite the fact that my parents declining health had reversed the adult parent relationship years ago, I feel a horrible emptiness, like all my back-up has gone. I feel very alone and more vulnerable than before. Gone is the shield that seemed to separate me from my own old age and death, along with any illusion that I will always matter and be able to overcome adversity. Now I am next in line and through no effort of my own, I have stepped up.

The realisation that I will never play the role of daughter again makes me instantly feel older.

Before my parents died I didn’t really feel grown-up and often speculated that this was perhaps one of the best-kept secrets of life, that nobody ever really feels grown-up. Now as the eldest of three siblings and a mother and grandparent, I have to face the reality that there is no one between myself and death. Losing the last generation forces us to re-examine our own mortality. When a grandparent dies, there’s still a whole generation between us and death. With a parent’s death, our own eventual demise feels uncomfortably closer.

The loss of our parents severs a fundamental tie. A generation disappears. A hierarchy ends. The pieces of the jigsaw are rearranged. Our parents are the keepers of our wisdom. We spend a lifetime looking to them for answers. They have been the archive of knowledge about our history, our upbringing, family traditions and the names of all those faces in old photos. With their passing, so to goes the information and insight that hasn’t already been communicated.

Because they were such wonderful people as well as parents, losing them has been especially hard. However I am aware it must be so much harder for an only child without the love and support I have experienced from my brother and sister. I am lucky to have had such wonderful role models in my parents and the support of a loving family following their demise. I am aware that not everyone is so lucky in this respect and I am truly grateful.

My parents were wonderful role models. Their strength of spirit, integrity, sense of justice and values are a fantastic legacy. They ignited my passion for holidays abroad, reinforced my strengths and overlooked my weaknesses. I only hope I can do half as well with my own children.

It is so hard sometimes to walk this life day after day, letting go one by one of the people we love… the people that provided the foundation for our being….the people who loved us unconditionally.

Now I must summon the strength my parents applauded, for its time to move on, to take the first tentative steps on my transformative journey and put my parent’s legacy into practice, just as they had to do when they lost their own parents and my own children will have to do with me.


“Treat your parents with loving care…

For you will only know their value

when you see their empty chair…” (unknown)







The Secret To Finding The Right Care Home For Your Elderly Relative

Finding the right care home for an elderly loved one can be time consuming, stressful and overwhelming. Where do you begin when presented with a long list of care homes in their area? How will you know which one is best for them?

The secret

  • The secret is that you need to personalise your research by using personal selection criteria. Here are some of the things you need to think about:
  • What geographical area do they want to live in?
  • What kind of care home do they need? A residential home, a care home with nursing or a specialist home for people living with dementia?
  • What budget do they have? If your relative is being funded by the local authority, they will have a limit to the amount they will pay so find this out before you begin your search

What is important to and for your relative? 009_old_woman_smiling_optimised[2]

When looking for a care home for my clients, I begin with the question, ‘What is important to you about living in a care home?’ If they are unable to answer for themselves, I ask the people who know them best. Sometimes they need a little help so I prompt them. These are a few of the things I have been asked to include in a care home search.

Having a nice garden, being pet friendly, having a nice view from the window, WiFi access, living near family, access to public transport, being part of a small group, having people to talk to, having plenty to do, being treated with dignity and respect, feeling in control, not having to move again if condition deteriorates, ensuite facilities, being able to take my own bed and chair, having breakfast in bed, be near church, male as well as female staff, somewhere quiet to meditate etc.

Then I find out what is important for them. For example, level access, staff trained in managing dementia, access to trained health professionals, cater for special diet, staff trained in end of life care, meets National care standards etc.

See things from your relative’s perspective

When looking for a care home, it is important to try and see things from the person’s perspective rather than your own.

For example when we had to find a new care home for my mother who is living with dementia, it was more important to find a home that would be able to manage her difficult behavioural and mental health issues than one having nice furniture, matching bedding and ensuite facilities. We initially found it difficult to visualise Mum in a home where the decor and furniture didn’t match and there was an expectation that she would be brought to the dining room for breakfast (she had been enjoying breakfast in bed for over 10 years) and have to sit in the lounge or conservatory with others all day. In her previous care home she had refused to move from her room where she stayed all day every day.

We soon realised our fears were unfounded. Mum has responded magnificently to the calm atmosphere and gentle, confident approach from staff. The staff team who are multicultural and dress in their own individual way, treat our Mother with dignity and respect and always have a warm smile for us when we visit. She is also oblivious to the functional and uncoordinated decor, furniture and equipment, despite these things having been important to her in the past.

Lessons to be learned

There are lesson to be learned here. Firstly, don’t assume that your mother or father will find the same things important to them as they did in the past, as like my mother this might not be the case. Secondly  routine and a calm atmosphere are important for people living with dementia.

Another example of a personal approach to finding the right care home is one of my recent clients. Something that was important to her was that the room was big enough to accommodate her double bed and bedroom furniture, the home was plush as she was leaving a large luxury apartment and there were regular social functions and people she could talk to as she craved company.

Good luck with your search and remember , the secret is to find the right home for your loved one rather than yourself.

Person-Centred Funeral Care

I am well known for being passionate about care for older people being person centred and in my work often come across the subject of funerals. I was interested to know how they have changed over the years,  so I went to see a local funeral director, Max Webber the co-owner of H.D. Tribe in West Sussex. This company even has their own chapel, florist, function room and caterer, all in one place, which I think makes for a more convenient and intimate funeral.

I found the meeting fascinating and informative and would like to share what I learned with you. Max, like many independent funeral directors, finds carrying on the family tradition is a way of life and is deeply committed to upholding professional standards.DAD Funeral flower arrangement

Here is what I found out when I spoke to him:

In what ways have funerals changed over the last 10 years?

Expectations have shifted from religious church influenced funerals to more customer focused, person-centred funerals. Less than 70% of the funerals Max arranges, now have a religious funeral with 30% choosing a non or lightly religious celebrant. While there used to be only hymns and classical, respectful music at funerals, now the majority don’t have hymns. When you think about it, most schools no longer sing hymns and if someone doesn’t go to church, why would they choose to sing hymns at a funeral? Most people now choose popular classics and songs that reflect the individual which makes the funeral more personal.

What are the most common types of funerals?

Around 85% choose cremation and 15% a burial

What are the least common types of funeral people choose?

  • Burial at sea
  • Burial in own land (People can bury a person anywhere so long as they dispose of the body legally. The criteria for this is that they must not affect the water course, gas or electricity supply or cause a public nuisance)

How can People choose a funeral director?

Independent funeral firms can offer a more personalised service because they appreciate local customs and expectations and are not distracted or bound by corporate rules handed down from head office and shareholders , so can be more flexible and responsive to their customers’ needs.

To choose one ask the people you know if they can recommend a funeral director whose service they have been happy with or search on the internet. Here are a couple of useful websites.

The National Society of Allied and Independent Funeral Directors

The Association of Funeral Directors

Typical costs of a funeral

On average, the price of a typical funeral, including non-discretionary fees, is £3100 for a cremation and over £3,500 for a burial. This includes the following fees called disbursement costs:

Doctor’s fees for death certification £157  This fee only applies to a cremation, not for a burial. It also won’t apply if the deceased is in the hands of the coroner.

Cremation fees  Worthing Crematorium is currently £631.  Costs for crematoriums vary and it pays to shop around. If your funeral director has its own chapel like H. D. Tribe, you can have the service there and they will take your loved one to any crematorium afterwards,  and some charge considerably less. I think this is a much nicer idea as I hate the conveyor belt approach at most crematoriums and I always like to get value for money!

If you want to avoid a queue waiting for you to leave the crematorium and don’t want to feel rushed, for less than £100 you can book a double slot so people wont be ready to jump in your place the moment you leave.

Burial fees £1,500

Minister/Celebrant fees start at around £150

Your funeral director will be able to help you here as they all have a list. If people are uncertain, Max at H. D. Tribe asks his customers how religious they want the funeral to be on a scale of 1-10 and chooses the minister or celebrant accordingly. A nice idea I thought.

There are a number of additional services which you can add to a funeral, like Flowers, Catering, Notices in Newspapers and if a burial there is the headstone to consider as well. Remember, these aren’t essential costs. But if you do want to include them as part of the service, whether you arrange the funeral yourself or use a funeral director, it’s important to shop around as costs can vary significantly.

You can of course save money by arranging and managing the funeral service yourself and DIY funerals have become more popular recently. You can find out more about it here Good Funeral Guide Personally, I would find it hard to have the extra work and worry at a time when I was grieving for someone I loved but for some people, it offers a way forward.

What about pre-paid funeral plans?

The option to pre-pay for your funeral has for some time appeared to make good financial planning. Funeral costs continue to rise and a pre-paid plan can mean that everything is taken care of when the time comes. However in recent times, the big national companies have started to change the plans they offer. Some will not cover disbursements (i. e. cremation/burial costs, ministers/doctors fees) and others are now charging a supplementary administration fee. These changes are a direct response to the current financial climate. If you or your elderly loved one is thinking if taking out a pre paid funeral plan I would advise you to discuss this with your chosen Funeral Director as some of the funeral plans advertised in newspapers and magazines are linked to national funeral companies, that put them out to tender for the cheapest bidder, thus restricting client choice.

H. D. Tribes has been in business since 1929 and Max has been running the business for 32 years. They cover the coastal area of West Sussex. Check out their website at


There appears to have been a major shift in funerals over the past few years with people no longer being constrained by rules and regulations and opting for a more person-centred approach.

If you have any queries or need to arrange a funeral now or in the future, my advice would be to find a good local independent funeral director and talk over how you would like to personalise your funeral with them.

Finding the Right Nursing Home For Andy

Andy, a man aged 79 had a terminal illness and was unlikely to live more than three months. He was being discharged from hospital and I was asked by his solicitor to find him a nursing home. I was advised that NHS Continuing Health Care would fund this.

I visited Andy in hospital and was interested to learn that he was a Buddhist and a vegan. He asked me to find a home that would respect his vegan diet with a peaceful room where he could practice his meditation. wb051438

I spent time with Andy, learning about his beliefs, as I knew there are different beliefs and practices within Buddhism.

Andy believed that so long as there was “red blood pulsating in his body” his life was sacred. It was therefore important that efforts were made to save him in the event of a cardiac arrest, despite his terminal prognosis.

When I spoke to staff on the hospital ward I found out there was a DNR (Do Not Resuscitate) form on his file. Because of what I had learned I insisted this was removed and made it clear that an attempt must be made to resuscitate Andy if his heart failed.

Following a careful search I found the ideal nursing home for Andy. I was shown two rooms. One on the first floor, and one on the ground floor with doors opening onto a garden with stunning grounds, trees and abundant wildlife. I knew this ground floor would be ideal for Andy to find the peace he craved for his last journey. I also knew he loved trees and animals and would be able to enjoy them from his bed.

Unfortunately I was told that only the first floor room was available for people funded by the NHS. I spent time negotiating with the manager to allow Andy to have the private room on the ground floor because of his spiritual needs and the fact that his life was limited. Eventually she agreed and Andy moved into the room two days later. He died a month later. It was such a privilege knowing I had played a part in helping Andy’s final journey on his own terms.

Dying Matters

This week is Dying Awareness Week so I have decided to tell my personal story, where I believe knowing what my father wanted at the end of his life made a real difference to him and to my own bereavement journey.

Whether or not to resuscitate

My father’s life journey began to slow down a few days before his 90th birthday, a milestone he desperately wanted to reach as no-one in his large family had managed it, he lost his strength and became confined to bed. I moved in to care for him as he wanted to remain at home and I didn’t want him to spend his last days in an impersonal hospital ward Neither did I want his life prolonged, as his quality of life had deteriorated badly during the past months. I discussed this with his GP as I knew it is what Dad would have wanted and kept the DNR (Do Not Resuscitate) form available in case it was needed.IMG_0005

Knowledge brings confidence

In spite of knowing I was carrying out Dad’s wishes, when I heard his worsening cough, I wondered whether a trip to the hospital with antibiotics and IVs etc. would ease his discomfort. The thought was only fleeting and I was thankful we had discussed the matter before his health deteriorated.

Sleep was so important

Watching someone you love slipping away when there is nothing you can do about it is not easy. I felt as if I had stepped outside normal life and was suspended in some kind of time warp. Dad had a worsening cough, spent most of his time sleeping and must have ached from being in bed so long. I was glad he slept through the indignities to which he had to be subjected and was startled by the realisation of how much like an infant he became. My heart ached when I reflected on the proud, upright and independent man he had been.

Knowing your loved ones wishes

Dad passed away peacefully the day after his 90th  birthday, in his own home with his favourite music playing. I was able to reassure him that my brother, sister and I would make sure Mum was ok in her care home and told him he should be proud of the life he had lived and now deserved a rest. I am so grateful I was able to spend his last days with him and to contribute to him having the dignified death he deserved on his own terms. I could never have done this without knowing how he wanted to make his final journey.

A life well lived

I miss him and my heart aches for what I have lost but I know he is in a better place. My own bereavement journey has also been enhanced by the knowledge that I carried out my father’s final wishes and his affirmation that he had done all he wanted and lived a good life. I can think of no greater privilege than to help someone you love die their way. Dying really does matter.

You can watch this episode of Scott & Bailey on ITV Player until 6th June 2013. The duo investigate the death of a care home resident whose daughter complains about the level of care he was receiving. Will they find evidence of foul play?