What is an End-of-Life Doula?

Some of you will be familiar with birth doulas, they support a mother during the intimate process of giving birth.  An end-of-life doula does the same but for someone who is dying.

I trained as an end-of-life doula a few years ago and since then I have sought to support families and individuals during the last period of life.

 

The role

The role that I have carved out is as a care giver and that can be as a sounding board, someone who does not have a personal stake and can be empathetic and supportive without making judgement or being affected by what is uppermost in the mind of the client.

Some of my clients have been at the very end of their lives and need a familiar person to pass the day-to-day information to the wider family and to be there to make tea, answer the phone and ensure that the client sees the people who matter most and is kept comfortable.  You may wonder why that cannot be arranged by the family, it can; but it is tiring and they are emotionally invested in those last few days and need to be supported as well.

Several of my clients are not about to die, they are old and frail or suffering from a long-term illness that necessitates support from someone other than the doctors and nurses who care for them medically.  In pre-covid days I often accompany clients to doctor’s appointments to hear what care is required and to record the information that they received.  It is hard to recall all that you are hearing when you are under duress and worried.  After an arduous meeting like that, it is important to take time and work out which services will be required, a doula will assist you in finding the right people to fulfill the various roles – spiritual and emotional.

 

My experience

I have had the immense honour of supporting people who know that they are going to die soon but have specific events that they want to be able to attend.

Some years ago, I helped a father to prepare for his only daughter’s wedding day, in the end it had to be brought forward and took place in the hospice that were caring for him.  We spent time planning what he wanted his daughter to remember of her special day and how important it was to him.  I wrote and conducted his funeral and a wider celebration for his family too.

The experience was intense and very moving for me and I will always hold the family close to my heart.  I learned an appreciation of the wider context of family through that process.

Tragically illness can take someone too soon and this presents another raft of problems; children who need the guidance of their parents.  It is especially difficult to support a parent who knows that they will not see the milestones that they envisaged for their children and cannot explain why this has befallen them.  None of us can provide answers but we can walk alongside the family, removing some of the tiny stones along the path and allowing them the time and the space to be angry, sad and confused by the journey.

I worked as a pre-school teacher for many years and I understand how children can be sad in one moment and caught up by something wonderful the next.  It is not that they do not care, they are living in the moment which is the privilege of youth.  It is my job to help the parent record the memories that will be stored forever and will serve to bolster their children later on.  On a practical level the making of memory boxes has been therapeutic for all concerned.

Yesterday whilst walking I came upon the burial spot of Mabel, a collie dog whose owner I supported a while ago.  Mabel had been her treasured companion for some time; she had cared for her parents in the last years of their lives and had never married.  I was reminded of my own beloved companion of many years, Scrumpy.

Scrumpy’s memorial tree and heart made by a good friend.

 

We all need support

It is so important to have a friend, human or animal to be with you in your hour of need; none of us should be alone when we are walking towards a time that is fraught with uncertainty.  It is natural to be frightened and sharing that fear with someone can help to alleviate it.  If you are scared of dying, and let’s face it, who isn’t; I understand that you want to be brave in front of your dependents, but you cannot be brave all the time and you must look after yourself by allowing someone to help shoulder your burden.

 

Conclusion

I believe that there is a place for a trained supporter in all of life’s experiences – a teacher, a doctor, a lawyer and also a doula; not to supplant the care of those you love but to pick up the pieces and to hold a space for you to die in the very best way that you can.

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