Respite for families

On a Tuesday I am called to see Áine, a patient who has had lung cancer for the past two years, caused by smoking, and her condition has deteriorated significantly in recent weeks.

She would prefer that her family remember only their best times together at home and so has made the decision to die in a hospice, and her hospice bed will be available on Thursday morning.

She is very weak so I reposition her gently in the bed and give her some medication for pain and nausea.

Her husband and children are exhausted and retreat into other bedrooms to get some much-needed rest. Caring for a loved one at home can be a big undertaking and many family members will take the opportunity to sleep when a night nurse is present.

Áine says she never sleeps much at night, so we talk and she reminisces a lot about her life. She is very accepting and prepared for her imminent death, and has made all her own funeral arrangements. She’s very grateful that she got to see her children into their 20s, and takes a lot of comfort in knowing that she is leaving them with strong values about what is important in life.

It’s obvious that her bravery is a huge source of strength to her family at this very difficult time.

I return to Áine the following night and am greeted at the door by her husband like an old friend. It’s such a privilege to be allowed into a family’s private space at such a difficult time.

The family gather in her bedroom for their final night together at home and they talk, laugh and cry long into the night. I tend to her wound dressings, bathe her and give her some medications so she will be comfortable transferring in the ambulance to the hospice.

In the morning, we embrace, I say my final goodbyes to her family and head home. In conversations with people who are dying, I think you can learn so much about living, and I know Áine will be someone I will think of often.

Flexibility

I phone Alan’s wife at 9.30pm to introduce myself and get directions to the house; she is distressed and feels Alan’s breathing is deteriorating, so I arrive before 10pm.

Alan’s son greets me at the door and brings me up to Alan’s bedroom. On examination, Alan has all the clinical signs that are present when death is very near. I encourage his wife to call the immediate family to the room. They all gather around the bed and I slip into the background.

Twenty minutes later, Alan takes his last breath surrounded by his wife and children, who embrace and cry together. I have seen many different reactions in people, in the immediate aftermath of a loved one’s death.

We are all amateurs when it comes to grief, and all reactions are perfectly normal.

After a short time they leave me with Alan to carry out some final aspects of his care that need to be done before the body cools.

I remove the tubes connected to him, and close his eyes and mouth. I reposition him on to his back, remove all clinical equipment from the room, dim the lights and light some candles.

Respecting families’ religious and cultural wishes is integral in this care and I put some rosary beads and a prayer book in his hands at his wife’s request.

The family return and I leave the room to telephone Alan’s GP, the hospice and the palliative nursing team to inform them of his death.

I often tell my nursing students that you can’t underestimate the therapeutic value of small things, and I bring a pot of tea up to the family.

I write up my notes, discuss the death certificate and undertaker arrangements with Alan’s wife, offer my final condolences to the family and head home at 2am.

Football coaching

I retired a couple of years back and now spend three times a week coaching the minor girls’ football team in my local club, Na Fianna.

There’s nothing like the infectious energy of 30 teenagers to take your mind off a difficult night’s work.

I spend Saturday and Sunday nights with Ellen, who has very advanced cervical cancer. Ellen’s adult son and daughter have taken time off work and are caring for her at home. They go to bed when I arrive.

Ellen is unconscious at this stage and appears agitated, so after examining her I put a tube in her bladder. This relieves some pressure and she settles again. I spend the two nights sitting at her bedside, observing closely for signs of deterioration, giving medications when necessary, and keeping her comfortable.

Ellen’s daughter is concerned about what to say to her children about their granny at this time.

Communicating with children about the anticipated death of a loved one can be very challenging, and children’s understanding of illness and death also varies at different ages.

I encourage her to talk to her children about what is happening, and give simple, truthful, age-appropriate information. I direct her towards information and resources available from the Irish Cancer Society to help her explain this to her children.

When Ellen’s children get up , I let them know how her night was before I go home.

A recent report published by the Irish Hospice Foundation entitled Irish Attitudes to Death, Dying and Bereavement found that nearly three-quarters of Irish people would wish to be cared for at home when they are dying but that only about a quarter get to actually do so.

I am often asked what I enjoy about my role as a night nurse, and really I believe that, although the end stage of a terminal illness is a very difficult time for patients and loved ones, with the right support this can be a very comfortable and peaceful journey in their own home. I feel very honoured to be part of this journey.

The Irish Cancer Society’s night nursing service is available free of charge. To find out more about it, call the society’s helpline on freefone 1800 200 700, or see cancer.ie