TIME TO SAY GOODBYE

My uncle passed away suddenly four weeks before Mom succumbed to her cancer. He was not unwell and had been watching the Springboks lose to the All Blacks. He suffered a massive heart attack which was complicated by a weakened aortic wall. Despite extensive surgery, over a number of hours, the surgeons could not save his life. He died without saying his final goodbyes to his assembled family. His daughters are my age and I felt so desperately sad for their loss. They never had time to say goodbye.

I know that Mom hated her illness and was so frightened of her diagnosis. But as the months went on and Mom came to accept her situation, I felt so privileged to have the time together. Of course, nothing can ease the pain of bereavement but Mom's death was uncomplicated and peaceful, at home. We had said everything we needed to say.

Two important things helped us. One, Mom's GP and District Nurse helped Mom to sign a Do Not Resuscitate order. This meant that if the paramedics were called to the house, they would know that Mom didn't want to die in hospital and did not want any resuscitation or intervention. And two, as Mom's death approached the nurses took Dad and I through the Liverpool Care Pathway. We sat calmly with a cup of coffee, away from Mom as she was semi-conscious but could still hear. This topic was covered by Danny Pike on BBC Surrey today.

The pathway is designed to make sure that the family understands what is about to happen and to bring in any other support that may be required. It was very comforting and positive, and we were prepared when Mom stopped breathing. Afterwards, it was so quiet. We had no more words, nor did we need any.

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ANGELS CARED FOR MY MOM

Published Friday 30 September 2011 in the Surrey Advertiser

Subject: Letters page - In praise of local end-of-life care

Date: 26 September 2011 08:39:36 GMT+01:00

To: surreyadvertisereditorial@trinitysouth.co.uk

Dear Editor,

My mother recently passed away at home, peacefully, after a short illness, having been diagnosed with lung cancer at Christmas. She was treated at St Luke's Cancer Centre at RSCH with the utmost care and dignity, but there was no cure. Mom decided that she wanted to die at home, with as little intervention as possible. 

Our GP made sure that Mom was made known to the District Nurses early on in her diagnosis and we are so grateful for the help and support we received from them. We knew nothing of the help we could get locally, so it was a difficult journey for us, and we would like to highlight the fact to other families that there are so many wonderful people, working together, to provide integrated care for patients who have decided to die at home.In our area, the District Nurses link in with the Community Nursing team and the Beacon Service to provide daily nursing and basic care, and support for families 24 hours a day. We were provided with home oxygen ( for which we received a refund of electricity used to run the equipment), a profile bed so that Mom could be re-positioned easily, and a commode. Carers from the Beacon Service came in every morning to wash and dress Mom so that she could face the day and have visitors. A District or Community Nurse visited at least once a week. The Macmillan nurse from The Beacon visited every week to discuss pain relief and gave us the opportunity to ask lots of questions. Mom's GP provided support and prescriptions at a moment's notice.  We were very well served by these caring individuals. They worked together and communicated with each other. A folder remained at Mom's bedside and all her care plans and notes were completed. This meant that even if someone had not seen Mom previously, they knew exactly what she needed. We could not have had better care for Mom anywhere else, either in hospital or hospice.

When Mom passed away on a Saturday evening over the Bank Holiday weekend, a District Nurse and a Community Nurse from two local surgeries were in attendance. Because Mom was an expected death in the community, the District Nurse was able to verify her death, saving us from having to wait for ThamesDoc to come out. This meant that we could spend valuable quiet time with Mom to say our final good-byes before the undertakers came to collect her. The Nurses stayed with us, even though their shift had ended. 

We will be forever grateful to those angels. From a very sad story comes a positive experience. Patients and their families should be reassured that you are not alone. There is always help available. Please don't wait until you are in a crisis. Make sure you have discussed your loved one's wishes and then tell your care team. Mom knew exactly how she wanted to die, she had insight and even planned her funeral! We miss her so much, but her passing was made easier for us because we had the time and support to make clear, informed choices.