Live-in carers often accompany clients through illness, deteriorating health and end of life into death. This period of care could last for months or years. I recently cared for a client who died after a client-carer relationship that spanned almost six years; not an unusual length of time for a carer to support a client. During these years my client and I developed a deep friendship.
She sometimes said to me; “You’re the sister I always wanted to have. “What we had was true sisterhood rather than one determined by blood. One beautiful characteristic of this client was her willingness to relate to me as one of her own. An outgoing carer once said to me when the client received a lunch invitation, the carer handed her the card and said, “This is for you”. “No”, she said, “It’s for both of us” (meaning the client and myself).
Following her death, her son said you were ‘soulmates’. I heard this as the confirmation of the always deepening quality of our connection and relationship together. Another carer remarked, after covering my absence, “She adores you,” and I adored her equally. We did everything together: cooked, ate, laughed, walked, shopped, shared car journeys, watched films together. We also navigated the unpredictable and precarious nature of her degenerative neurological disease, without getting subsumed by it.
And when my client – this beautiful woman – died, there was no devastation, no sadness, no loss, no tears, instead I felt a sense of completion, both of her life, but also of our relationship together.
I was at ease with her passing because of my own understanding and acceptance of death as a natural part of life and closing of a life cycle. Though seemingly ‘sudden’, her death was not a surprise. I am thankful we were not afraid to talk about death while she was alive.
Four years before she died, on a trip to a crematorium to visit the plot of her late husband and other family members, we talked about death and dying, how she felt about them and what arrangements she wanted for her own funeral. All of which I noted down.
In the last two years of her life, I – together with the agency I worked for – felt the importance of having conversations about death and dying with her family members. This was a delicate time as the family were uncomfortable and therefore reluctant to face the prospect of my client’s mortality. Eventually conversations were had with my client and family members on the importance of ensuring end of life decisions were made in advance and recorded, in the likelihood she may not be able to make decisions for herself in the future. Consequently, a ‘Do Not Resuscitate’ instruction was put in place at the request of my client. My client also felt it was important to ensure her end of life wishes were recorded. After conversations spanning many months, during a meeting with my client, a family member and specialist nurse practitioner, my client completed an Advance Care Plan. In it she expressed amongst other things, her wish to remain at home for end-of-life care and to be cared for by her long-term live-in carer (myself) until she died. She did not favour hospital admission and did not want any aggressive medical intervention to keep her alive.
In the last three months of her life, her health deteriorated and with it the quality of life she once enjoyed. She lost weight, slept more and her appetite diminished. Another health condition presented which required a surgical procedure. In the end, it was an infection that impacted on her general health and her well-being declined. At this point her wishes in the ACP were referred to often by her GP and other health practitioners.
A forever ‘glass half-full’ person, she wanted to keep going as before but found herself governed by a body that no longer supported her to do the things she loved to do. In the last four weeks of her life she lost the sparkle in her eyes. She knew what was happening, but said little. The day before she died she said she didn’t want surgery; it would be a waste of money as she didn’t have long to go now. On the morning of her death, she found it difficult to walk when she got out of bed and asked, “How much more of this?”
Her death at home, perfectly timed, spared her further physical and psychological decline. Her wishes were honoured to the end. She did not want her body subjected to medical interventions or her home medicalised with equipment to ‘keep her alive and mobile’. This was a woman who was joyful at heart and to have introduced these elements would have brought dreariness into her life. This was not for her.
When she died, and because of our close bond, some people’s assumptions on how I would be and expectations of how I would respond were not met.
Full acceptance of death flows from a relationship between carer and client that is mutually respectful, loving and nurturing: where each brings true companionship, healing, and wisdom to the other.
When this client died there remained deep appreciation of the quality of relationship shared: insights, sisterhood, challenges and laughter, each one treasured and embraced with gratitude and a deepening appreciation, even now.