Reading Cathy Rentzenbrink’s memoir The Last Act of Love and the companion to it A Manual for Heartache is a gut wrenching experience. The Last Act of Love was shortlisted for the Wellcome Prize 2016   for its an account of how Cathy Rentzenbrink’s younger brother Matt had a head injury and was for eight long years in a coma. The medical term for it is PVS or “permanent vegetative state” or as their mother says of Matt “living corpse”. Matt was a teenager in his prime when he met with an accident that left him in this horrific state. The Last Act of Love is a compassionate account of a sister trying to understand what her brother must be going through if he can feel anything. More importantly it is an account of how much of themselves caregivers have to give to ensure that a patient is cared for well.

Caregiving can be a thankless task since it is repititive with no breaks whatsoever. After a while the sympathetic circle of friends and relatives return to their lives but the immediate family of the patient is responsible for the daily courageous and relentless task of caregiving. At times it can become exceedingly lonely, stressful and mentally debilitating. For Cathy Rentzenbrick her escape mechanism was reading.

Reading was still my friend, though. I read continuously and compulsively, drowning out sounds of my own thoughts with the noise of other people’s stories. I no longer turned out the light before going to sleep — I had to read until the moment my eyes closed. There could be no gap for the demons to jump into. 

Most caregivers are caught in a cycle of maintaining systems that they forget to take care of themselves or share experiences about the roles they inhabit. These involve a bunch of questions about the quality of life the patient has to how effective are advancements in medical technology.

The Last Act of Love written  many years after her brother passed away takes its title from a phrase the author’s mother used in her sworn affidavit to the court seeking legal permission to discontinue nutrition and hydration given how poorly Matt was with a chest infection and recurring epileptic fits.

I have known for some time that there is nothing I can do for Matthew to enrich his life in any way. He needs to die. We had hoped it would happen with an infection and without the need to approach the court. But the sad irony is that his poor body, unable to do anything else, seems capable of fighting infection. So we are asking the court’s permission to cease nutrition and hydration so that Matthew can be released from his hopeless state. It is our last act of love for him. 

Writing The Last Act of Love may have been thereapeutic for Cathy Rentzenbrick but it certainly provides a much needed account of hope and a way of managing caregiving at home, many times the dilemma it presents. Sharing of stories is a relief for many in a similar situation but few have time to do so. Reading an account is possible.

Within months of the successful publishing of The Last Act of Love, Cathy Rentzenbrick wrote A Manual for Heartache which can be viewed as a sequel to her memoir but works very well as a manual for managing grief and loss. It is full of wisdom and gently with big dollops of kindness shares wisdom garnered over the years of caregiving for Matt.

Here are some invaluable excerpts from the book

On grief

What I now wish someone had told me is this: life will never be the same again. The old one is gone and you can’t have it back. What you might at some point be able to encourage yourself to do, and time will be an ally in this, is work out how to adjust to your new world. You can patch up your raggedy heart and start thinking and feeling your way towards how you want to live. That’s what I wish someone had told me and that’s what I want to tell you. I think I’m finally doing it.

On etiquette of bad news

It seems ridiculous that in the face of someone else’s misfortune we spend time worrying about our own behavious, but it’s only human and is particularly true when it comes to death and grief. I’m sure it was easier in Victorian times when there were prescribed rules, when society and the Church provided a framework. There was guidance on what to wear, how to communicate with people, how much time should elapse before everyone rejoined the business of life. Visible signs such as black crepe and mourning brooches made of jet acted as clues to the rest of the world. Like a version of the “Baby on Board” sign stuck in the back windscreen of a car, the blackness served as a warning that an individual needed to be treated kindly. All cultures have rituals around death and mourning but, in our increasingly secular society, it’s easy find ourselves unsure of what to do. 

….

I have come to see there is a beauty in simply being present for someone who is struggling wiht a heavy burden. The best thing you can offer is unlimited kindness. People to whom the worst has happened can be out-of-control sad and unable to obey the normal rules of life. It mught be all they can do to hold on. If they are mean or cruel or temporarily incapable of good manners, we need to suspend our expectations around them and give them space and compassion as they splinter and behave badly and say the wrong thing. If they are behaving perfectly and holding themselves together, then that’s OK, too. 

Reading both the books together is highly recommended. Share, share, share these books.

Update ( 5 Sept 2017)

The Guardian Longreads published a fascinating account of “How science found a way to help coma patients communicate“. It is worth reading!

Cathy Rentzenbrick The Last Act of Love Picador, an imprint of Pan Macmillan, London, 2015. Pb. pp.248 Rs 450

Cathy Rentzenbrick A Manual for Heartache Picador, an imprint of Pan Macmillan, London, 2017. Hb. pp. 150 Rs 499 

31 August 2017