A do-what?

 

“To do is to be” – Nietzsche

“To be is to do” – Kant

“Do be do be do” – Sinatra

A number of people have asked me to say a bit more about why you would want a doula, what one might do and how to get one.  What I write will be based on the UK but could equally apply  in other countries.

“Why would I want one?”

It is a fact of life that any one of us at any time could receive the sad news that we have a life-limiting condition.  In current medical terms this means that your life expectancy is usually under 12 months.  This condition has no regard for age or circumstances but hopefully you will be aged 90 with a large close knit family all living locally who can rally round and support you emotionally and practically during your last days and weeks.  However many people will not be in this position. As social mobility has meant that many families are scattered geographically it is also possible that smaller families mean less people to share the load.  Parents are having children later in life (the average age of first time mothers is now above thirty) and many of those children are staying at home longer due to the economic climate so there is less room for an elderly relative or spare capacity to support them in their own homes.  For example my own son was born when my mom was 72!

The state and the hospice movement provide excellent care for people who are in medical need and/or unable to cope at home.  The gap in provision appears to be where an individual still has some independence and can cope alone or with the help of family and friends.  This is particularly true where a person is not receiving any medical treatment.  Generally the state will leave you to it.  A number of charities offer services such as the Marie Curie Helper Service or McMillan Buddy Service.  These are dependent on volunteers and generally provide 1 -3 hours per week but they are not available in all areas. Services provided will usually be limited to companionship and carer respite.  A doula can supplement and complement other services as well as providing the only support.

“What would you do?”

A doula can do anything (within reason) that a person needs.  Initially a meeting might discuss how a client is feeling about their diagnosis and how they are going to manage in the final stage of their life.  The doula might signpost services that can help and make useful suggestions.  The doula may spend the whole of this meeting just listening if that’s what the client needs.  The plan for the coming months may involve the doula directly with regular visits and support or the initial meeting may be enough to help a client feel empowered to manage what is to come.  A doula may also assist in preparing an Advance Care Plan advising everyone how a client may want to plan for their last days.  Other activities could be inside the home or outside as many clients enjoy the opportunity to get out on visits or even to do some shopping.  Most of my work has been a combination of both.  Not all clients want to talk about illness and death all the time but I’ve had some amazing conversations just walking to a cafe or driving to the shops.

“How do I get one?”

“Let me google that for you”.  Yes, a search engine is always a good way to go.  But there are some excellent resources on the internet including Living Well Dying Well.  I would always suggest people try the charitable and statutory sectors first but if this isn’t available, or you want more than is offered, a private end of life doula may be just what you need.  Afterall, you wouldn’t hesitate to pay someone to clean your house or to tidy your garden: so just think of it as a gift of care to yourself or your loved one.

“How much is it likely to cost?”

The cost of this service can vary tremendously according to different doulas.  I would charge between £15 and £30 per hour according to the services provided and the circumstances of the client.  Occasionally I will charge additional expenses to cover costs such as mileage and parking but these would always be agreed in advance.

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What is a death doula?

Traditionally birth doulas were the original (often unofficial) midwives who helped women give birth at home.  They were there to answer questions and support a woman prior to the birth and to help in the immediate aftermath.  Similarly a death doula would be there at the end of someone’s life to help sit with the dying and/or to help lay out the body afterwards.

In the same way that women in recent times have been choosing home births with less medical intervention there has been a movement to promote this choice at the end of our lives.  At the very point in our lives when we want to appreciate familiarity, security and peace it can be alarming to be placed in a noisy, clinical environment surrounded by unfamiliar faces and without a lifetime’s accumulated knickknacks and treasures.

The hospice movement has worked hard to provide more “homely” environments in specialist care homes and there has been a concerted effort to enable people to remain in their own homes with support through “hospice at home” provision. However these choices can be difficult to make for both patients and carers. There can be a sense of security in being in a environment with nurses and 24-hour care, but this can be at the cost of losing everything that is familiar and valued.

When my mother was dying it was clear that the local over-subscribed hospice was reluctant to take her in when she could still “manage” at home.  But my brother, sister and I all lived over 100 miles away and could not pop in daily.  The reality of an otherwise fit and intelligent 91 year-old woman living on her own with a diagnosis of terminal cancer did not take into account issues of loneliness and fear – she clearly needed more support and this would increase as her illness progressed.  All three of us offered her a place to live but she was reluctant to leave her home, her friends, her local WI and her two nights a week playing cards at a local club.  It felt tragic that having maintained her independence for the previous few years of being a widow that she would have to effectively give up her way of life at the very end.  My circumstances were such that I was lucky enough to be able to arrange things so I could live with her for six months and with some respite care from my brother and sister my mother remained happy up until the end of her life.  Sadly, not everyone’s family and friends can do this but an end of life doula can help to make it a possibility.

mom1
Mom’s 90th birthday

The role of death doula has emerged to fill the gaps and complement existing services.  A doula may be anything from a companion at the bedside to a dog walker to an advocate.  I have helped a client unfamiliar with social media trace an old friend on Facebook in order to send a message of apology for an old disagreement.  I took another client to see the house they grew up in.  I escorted a frail elderly client to look at fridges because he couldn’t get his head around ordering one online.  The role can facilitate a retrospective inventory of a life well lived as well as assist in preparing an Advance Care Plan for a difficult and sometimes scary future.  At the end of one’s life our families and the state will often guarantee that our basic needs are met but sometimes a person needs something more. Most importantly it can be a sounding board for talking about death and dying when all around you don’t want to talk about it.