[CASE STUDY] Celebration of life for a dementia sufferer and her family

by | Nov 14, 2024 | Celebrating life, Direct Cremations, DIY Funerals, Funerals, Funerals for the living, Living Funeral, Living Funerals, Living Wakes

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INTRODUCTION

“You know who would have enjoyed today…”

I often hear people say this at funerals. Isn’t it ironic that the person we say goodbye to and celebrate the life of, isn’t there to enjoy what is being shared about them.

Yet that is the reality in the western world, particularly in the UK, where we struggle to talk about death; even though it’s the one certainty we have in life.

Being able to celebrate the life of a living person is a beautiful occasion. These events are sometimes referred to as Living Wakes or Living Funerals but essentially they are a celebration of life for those still living. 

As a celebrant, being able to work with a family to celebrate the life of a living loved one is a joyous occasion. Let me share Hazel’s story and why her family wanted to celebrate her life NOW. How we went about it and the end result for all involved.

A picture of a Mother and Daughter smiling at the camera. The older lady is in her 80s and is white and wearing a party crown. She has white short hair. Her daughter has long brown hair.

The original idea

Natalie, Hazel’s daughter, explained how her Mum was in the early stages of dementia. This meant that a lot of the family stories Hazel had shared over the years were becoming few and far between. Added to the fact that back in 2022 Hazel lost her eldest daughter, Rachel, at aged 58. This devastated the family especially Rachel’s own daughter Alexandra who was just 29 at the time. Rachel being the eldest of three children (with a nine year age gap before her brother arrived) meant that she had a lot of memories and facts about their family. So many of these were now gone.

Being able to celebrate Hazel’s birthday AND celebrate HER was really important to Natalie and her family. It gave them a chance to reflect on the past and start to record Hazel’s timeline. The idea of a living wake was quite difficult for all of the family to fathom and so it needed some explanation given that it is such a new concept. With this in mind, I didn’t want the celebration to be too strict. It felt important for it to be fluid.

 

What we did

Ahead of the celebration I asked the family…

They gathered old photos, considered songs and artists that Hazel loved to listen to.

 

On the day

They reflected on the good and bad times. A common theme was coming to the fore. How Hazel was a lady who dealt with a lot of hardship in her life but who had “gumption” and determination whilst bringing up her three children single-handedly. This needed to be celebrated.

 

WHAT TO CALL FUNERALS FOR THE LIVING

Funerals for the Living is a both a catch-all term for celebrations for those who know they are dying but also a name you could use for your own personal celebration. You might put on the invitations ‘you are invited to my Funeral for the Living, or ‘you are invited to Maggie’s Funeral for the Living’. Generally speaking this is likely to sound too formal and a little awkward.

  • Living Funerals
    A living funeral is the best term to use for an event which is literally like a funeral but with the person it is celebrating still present. If you are having the living funeral for yourself you would tell people “I’m having a Living Funeral”, if you are having a living funeral for a loved one you would say “we are having a Living Funeral for Mum”. At this kind of occasion a funeral would be arranged exactly as though the person had died but with that person alive and present listening in. The plus side of this term is that it is direct, it is obvious what it is and it has a bit of a ‘shock’ factor, which for some people can be appealing. On the other hand the term ‘funeral’ can be a bit depressing for some and might make people feel superstitious about it bringing the death closer. They might feel uncomfortable with the idea of referring to your funeral whilst you are still alive. They could feel that it implies that they have everyone has given up hope.
  • Living Wakes
    Originally a Wake was an Irish tradition which did in fact happen before the burial or religious funeral service, the difference being that the Wake was held with the person present after they had died but before the funeral. They are generally speaking raucous or convivial affairs with the person who has died present in their coffin. People will be drinking, getting merry, crying, laughing and telling stories of the person who has died. Inviting people to ‘please attend my Living Wake’ would make sense to an Irish family or friends from Irish backgrounds. The benefits are that it has a positive sound to it. It is associated with partying, and being ‘awake’. This would be a good term to use if you are planning this kind of occasion.
  • Celebrations of Life for those still Living
    A Celebration of Life for someone who is still living is just like a celebration of life for someone who has died and is focussed upon celebration and life! A Celebration of Life is generally considered more free-form, individualised and relaxed. These occasions tend to be informal and can take place anywhere in any context and take any form reflective of the person at the heart of the celebration. Calling your occasion a Celebration of Life for yourself should feel like a ‘safe’ term for most of your loved ones, what is good about it is that it is a known term for people who have been to Celebrations of Life for those who have died. It has positive, joyous connotations for most people. It can be associated with colour and with celebratory events generally. An invitation to ‘my Celebration of Life’ is likely to be most accessible as a term.
A family at a Funeral for the Living, all are smiling at the camera. They are all white and at the centre is an elderly lady with short white hair.

Raising Awareness about Funerals for the Living

A living funeral is a relatively new idea and so there will be some resistance to the idea when you first put it to some of your loved ones. You may be surprised, however at how positively it is received.

Often associated with morbid, miserable, dour occasions the term ‘funeral’ is very final and very sad for most of us. Many people have a very negative experience of a funeral and the idea of you having one or someone in your life having one before they die may feel alarming. 

It is possible with a careful and sensitive approach to slowly introduce the idea by showing films of people who have had Living Funerals or introducing them to books which approach the subject.

In the United Kingdom, Living Funerals are less well-known than in the US but it is starting to be well recognised as an idea by most funeral professionals and by our culture. It is perceived as a less depressing way to affirm a human life. The more literature, films and website articles you can show your loved ones the better. It stops the idea from being an unknown and consequently scary idea. When things become familiar to us they stop being as frightening

The most common reason people choose to have a funeral for the living is to make sure that they don’t waste money on a depressing, expensive experience for people they love, after they’ve died, they also want to be there to enjoy it and hear what people have to say about them.

This is actually a really positive thing and it will not take too long for people to say that they think that the idea seems obvious and brilliant. 

A young white woman in black with red and black long hair and sunglasses on her head is smiling. The woman she is talking to has her back to the camera and has flowers in her pink hair.

CHANGING SOCIAL NORMS

Understanding the evolvement of Funerals for the Living, change is slow but sure.

When cultures evolve it can take a while for us to notice and catch up. Chatting to your loved ones about these changes can be interesting and enlightening. Most people generally haven’t thought much about it. Funeral fashions are evolving from something sad associated with death to something positive associated with life. Funerals have evolved significantly in recent years, with a growing emphasis on personalisation and flexibility but also colour, joy and celebration. The term Celebration of Life is ubiquitous now and until recently it was unknown in the UK. This move towards life and away from death is hotly debated and fashions will come and go. For now the preference for colourful celebration has taken precedence over formal black Victorian pomp for the dead. Funerals for the living are evolving to meet these changing needs. Share these developments with those you love, it will help them to see the wisdom of embracing change.

What does Celebration of Life mean, how do I explain it to my loved ones?

Celebration of Life is a well known term but some people may be unfamiliar with it. It literally means celebrating life, but obviously in real terms it is a little more complex than that. It will help you to explain to people what you are talking about when encouraging people to get on board with a new idea like a Living Funeral. 

Celebrants, spend a lot of time understanding the people we are celebrating. We can do this by meeting someone in advance of their death or writing about them afterwards. In particular, we focus upon the things that person loved, the people and causes they cared about and the legacy they have left. Celebrating those things is to celebrate that particular person’s life. A celebration of life does not have to be a Drag Act or a Mamma Mia concert, it can celebrate the quiet things, the books and paintings or the favourite recipes of the person concerned. 

A Celebration of Life literally celebrates a person’s life, they way they lived it and who they are. If they were shy, we celebrate in a low key way, and if they were gregarious or even outrageous we do the same.

How is a Celebration of Life for someone still living different to a party?

A Funeral for the Living is different to a party in one very distinct and particular way. It is for someone who knows that they are dying or nearing the end of their life, they are elderly, they have dementia or they are very sick. A Living Funeral as a term makes this explicit from the moment you send out the invitation. A Celebration of Life does the same but calling it a party is not the same. Funerals for the Living really need to be facilitated by a professional. It is sensitive work and it needs to be guided safely. A party will not do the ‘job’ of a celebration of life if it is not expressly made clear that the celebration is for someone who knows they are nearing the end of their life. 

A white woman with pink hair is smiling. There are the backs of two heads. She is talking to the two people.

CAPTION: Modern Funeral Services. Jess May, Funeral Celebrant

Can’t we organise and have a Funeral for the Living by ourselves?

You could do this yourself but hiring a professional Celebrant like Jess May, Funeral Celebrant is the best way to ensure that it offers the same kind of healing as a funeral. The purpose of a Celebration of Life is to create space for conversations and stories, goodbyes and hugs, photo albums, music and processing grief. Funeral Celebrants are experts at all this, facilitating these things ourselves when we are involved in a process emotionally is almost impossible. It also means that we don’t benefit from the experience and so a trusted professional is really the only way to get the most out of the experience.

As funeral celebrants we thrive on enabling and facilitating conversation to help you in your grief. An event like a living wake needs someone professional to make sure that the occasion is ‘set apart’ from an ordinary party with the sole intention of celebrating a person who may not be with you for that much longer.

 

Objections to a funeral for the living

The idea of a funeral for the living is likely to be met with objections by some. Don’t be put off by negative reactions. You cannot change a person’s response or how they feel about your own wishes but you can help them to see the benefits and calm their anxieties by preparing them.

Here are some common objections, forewarned is forearmed! Prepare yourself ahead of time for those objections

  • It will seem as though we have given up
  • Why don’t we just have a party and not mention why
  • It seems a bit weird
  • I’ve never heard of it before
  • Nobody will come to it because they will think it is too sad
  • It will make you stop ‘fighting’
  • I am worried I will cry
  • It will make people feel awkward

Let’s break those down and find some easy responses.

Two white men sitting and chatting. They are in their 30s, one has a blonde mullet and the other has black hair. The backdrop is black.

It will seem as though we have given up if we have a Living Funeral.

When people organise Funerals for the Living something you people sometimes says is ” it will seem as though we have given up, or given up hope”.  The prevailing culture has a strong narrative around positive thinking and the power of visualising a different future. Positive mindset gurus everywhere will tell us that we make things come into being through thought alone. There is a great deal of evidence for this. There is also a great deal of evidence that those who are diagnosed by medical professionals with life limiting illnesses do, in fact, die. Both are true and a living funeral can even be a place where people can lend their support to a ‘positive’ outcome in all kinds of ways.

There is no reason why a living funeral indicates a loss of hope, gathering your people around you when you are dying may well in fact cause you to live for longer. There is a huge body of research that indicates that community and company, touch and laughter cause us to heal and live for longer. Being around those who accept our condition without being bleak about it and finding cause for celebration is actually a very hopeful act.

Why don’t we just have a party and not mention why?

The concept and purpose of funerals is healing, community gathering, social bonding and enabling healthy grieving. There is no reason for this to be depressing but acknowledging truthfully in safe spaces your current reality is very helpful for everyone. Just doing a characteristically British thing and not mentioning difficult topics is not actually very helpful for anyone. 

If the Living Funeral is explicitly named as a celebration for someone who is dying it is a huge relief for people to be able to speak openly. It gives them permission to speak about how they are feeling and the benefits to our mental and emotional health when we do this in company are incalculable.  Just ‘having a party’ avoids the difficult conversations but it also prevents healing.

Two people a man and a woman on a beach, both are white, the woman is laughing and it is dusk.

A Living Funeral or a Funeral for the Living, won’t it seem weird?

Things only really seem weird until they slowly becoming accepted by the culture. Until Covid 19 lockdowns forced us all to avoid funeral gatherings altogether the vast majority of us considered not having a funeral or not attending a funeral an appalling concept.

Now a few years later the number of people deciding not to have funerals and opting for Direct Cremations instead has become increasingly normalised. Sun Life’s 2023 Cost of Dying report shows that direct cremations just keep getting more popular all the time. In 2019, direct cremations were only 3 % of total funerals carried out. By 2021 that had jumped to 18%. That is a 500% increase in only two years.

If anyone had told us in 2019 that we would be deciding not to have funerals we would have thought they were weird. I’m not advocating for not having funerals, I think they are important. But if people are choosing not to have them I think a Living Funeral is a great alternative.

I’ve never heard of it before!

The best answer to this is “well, you have now!”. This is a response which is based in a concern about not doing the conventional thing, the honourable or decent thing. It may be a concern that one is showing a lack of respect for death rituals and conventional society.

The important thing is what you or your loved ones or all of you have decided together is right for the person who is dying. What other people have or haven’t heard of is beside the point.

Nobody will come to it because they will think it is too sad.

When people say this and speak on behalf of other people, assuming or guessing at their response we are usually projecting our own fears and feelings onto others. The chances are that if you invite people, honestly saying what you are doing and why then people will come or truthfully tell you why they feel unable to do so. There is in reality no way of knowing whether people will or won’t come. There is also no way of knowing or predicting how they will feel. There is also nothing wrong with feeling sad when someone is dying.

Arguably giving people permission to grieve and cry is a very healthy opportunity to give people It is a kindness and not a cruelty. Many people will be glad of an opportunity not to go to a depressing funeral and to be able to ‘pay their respects’ to the dying person whilst they are still living. 

It will make you stop fighting.

The language of battle, fighting, putting up a good fight, being a fighter, winning and losing our battles with cancer is endemic. It is also very harmful. It prevents people from coming to terms with the inevitability of death. It prevents us from gathering those people around us whom we love and it prevents us from having helpful and neccessary conversations about our circumstances, wants and needs. 

It is also not the case that celebrating your life will make you stop fighting for it. Surely, if anything it will make you fight harder to keep it.

I’m worried I will cry

It seems bizarre that we so often worry that we will cry in white english culture. In many other British cultures this is absolutely not the case and in other contexts across the globe not crying would seem very worrying indeed. In some countries we even have professional mourners. 

Crying is healthy and helpful, We cry because we need to cry in order to heal. We cry because we have loved and we cry because we have lost our precious people. Worrying that you will cry is very common but imagine how much harder you will cry if you nobody gets what they really want just because they were concerned that they would cry!

It will make people feel awkward.

This is quite likely, anything new or different makes you feel awkward. It doesn’t mean that we shouldn’t do it. Awkwardness doesn’t last for long, and there are many ways in which you can make it less awkward. If you celebration represents you or your loved one then people will feel much less awkward than if they went to a funeral which didn’t represent you or your loved one at all…or even if you have no funeral at all.

FUNERALs for the living; 5 reasons why they might be for you

When comparing a funeral for the living to a traditional funeral it’s helpful to think about the benefits to you and your loved ones.

1. Being there to hear what people say

Many, many times Funeral Celebrants are approached by families and friends at the funerals of the people they knew and loved and told that “Bob would have loved it and the only thing that makes me sad is that he wasn’t here to enjoy it and hear all the lovely things people said about him”.

It makes me sad to hear that over and over again. I also hear a lot of people talk about how they are not having a funeral because they can’t see the point if they are not there to enjoy it themselves or to hear all the things people are going to say about them.

It is very common to have these conversations. If you are one of these people then Funerals for the Living might be for you. 

2. Having the celebration you would want to attend

While your family, friends, significant others and those close to you will do their very best to do you justice they will be under certain constraints. They cannot know for sure, unless you have written everything down, exactly what you would have wanted. They may also feel very uncomfortable about asking certain people not to attend or incorporating things they think you would have liked. They may also come in with ideas that you would have hated. With a Living Funeral you can make decisions for yourself about who you invite and make sure that everything is exactly as you would want for you and your family and friends. 

3. Having control over the content and who is involved

Having control over the content is actually really helpful for the people you love. There will be no arguments or concerns with family dynamics. No one can say “but it is what he would have wanted”. If the funeral is for you then you get to decide who you trust to work on it with you and what will help you and your family and friends to move on.

Creating the content of a ceremony or a celebration of any kind is actually the most important part of the process. You all get to share stories and photos together and eat and cry and laugh and hug together. It brings you together into a shared journey with your favourite people. 

4. Seeing everyone one last time

Perhaps this is obvious but imagine seeing all of your favourite people in one room together and sharing meaningful stories about your legacy. You get to say your goodbyes and clear up misunderstandings, you get to laugh together in shared experience. 

5. Making sure that you people have opportunity to process grief in a helpful way

Funerals are and always have been for processing grief and for helpful mourning. To have no mourning practice or ritual is a very new and surprising cultural development. I do not see any evidence that this is a good development. This is why having a Living Funeral or a Celebration of Life for someone still living is a good option. It is an alternative to having no grieving ritual or process at all for those who are having Direct Cremations or choosing not to have funerals.

What is great about celebrating a life with those you love is that you can make sure that what you do is helpful to the majority of those involved and you can also choose not to involve people if you like.

Making sure that everyone has a voice is not always possible but with a Funeral Celebrant it is easier to achieve. A facilitated conversation can really help to involve as many different voices as possible as you create the perfect event for you.

A grand daughter in her 20s kissing her Grandma in her 80s. there is a bunch of pink roses in the foreground.

HOW TO CHOOSE BETWEEN A living FUNERAL CELEBRANT AND A traditional funeral 

Choosing between a living funeral and a traditional funeral comes down to a simple decision about what you and your loved ones want. Ultimately that decision ends with the person who knows that they are nearing end of life. 

Ask yourself

  • Do I want to pay for an event for me that I won’t attend?
  • Do I want to hear what people say about me?
  • Do I have things I want to say?
  • Do I want to see people one last time?
  • Do I want to break with traditions and celebrate my life now before I die instead of having a funeral when I have gone? 
A man with a beard and a baseball cap is playing a guitar and singing in an informal setting. He is white an is sitting outside. There is a white bath in the background.

Making the Right Choice: Factors to Consider

  • Your needs
    Working out what you need is the hardest thing to do sometimes, but somewhere within yourself you know what you need to do.

  • The needs of those you love
    Balancing your needs with those of the people you love can be tricky but often a good creative solution can be found. Do call Jess May to hear about how she can facilitate those conversations.

KEY TAKEAWAYS

  • Celebrating Life while you are still living Jess May’s Funerals for the Living are a new and groundbreaking way of celebrating life. She is a trailblazer in this field and her pioneering approach is breaking with convention but also observing societal changes around death. As the UK’s first Living Wakes Specialist she can help you to tailor a celebration of life to your personality and the needs of your closest people. Joyous, colourful celebrations to honour you and your life experience and you get to hear all about it, drink the bubbly and eat the cake!
  • Getting to be a part of the biggest celebration of your legacy. Jess May offers a chance for you to hear all the lovely ways in which you touched lives, you get to witness first hand the ways in which you changed the course of people’s life experience. You get to revisit your favourite tunes and catch up with your favourite people. You even get to thank the people who mean the most to you. 

CONCLUSION 

Funerals for the Living are the perfect solution for those choosing Direct Cremations, Assisted Dying, or who know that they and their loved ones will not want a funeral after they have died. They are colourful, joyous and personal and offer a new way of processing grief at end of life. 

Contact Jess now for a FREE discovery call. You can also access my FREE download 5 Alternative Funeral Ideas to Inspire You.

Contact me with your questions around arranging a Funeral

Jess May is a double-award-winning Civil Funeral Celebrant accredited by The Fellowship of Professional Celebrants since 2013. Jess is a renowned Brighton Funeral Celebrant, celebrated for her vibrant and inclusive approach to ceremonies. She holds a First Class Degree in Theology and Contemporary Spirituality from The University of Birmingham. Over the past decade, Jess has crafted unique ceremonies for a diverse array of individuals, from high-profile figures to local legends. Her career spans roles in Interfaith Relations, Project Management, Neurodiverse theatre, British Sign Language interpreting, and Hospice Care.

– Jess May, Civil Celebrant