We are all on the journey to reaching the end of our life as we know it, and for some of us it will happen suddenly and for others it will be a process of days, months or even years and for most of us it is not something we wish to dwell upon or discuss in any way as it is too painful to think about the loss of a person, or those we are leaving behind.
Some people deal with this stage of their life in the same approach that they have gone through other stages of their life, and they like to do it “their own way”.
This leads me on to tell you about a gentleman I know who lives in a rural community who is nearing the end of his life and his personality for as long as I have known has been one of a gentle person who is what some would describe as a ‘loner’ and reclusive. His situation is one where he is refusing support as he is in fear of going to hospital or into a care home but will visit his GP at times. This gentleman has a special reason to keep going for as long as possible and for wanting to stay in his own home, as he is the main carer for his adult son who has learning disabilities since his wife died years earlier. Family and Health professionals want to help and care for him but his love for his son and his need to be there for him is so strong, together with his fierce independence, leads him to choose this path and this gives him hope and purpose to live out his life his way.
How do people process this stage in their life? For many it is very difficult especially if they are not ready and it is a process they go through as Elizabeth Kubler Ross (1969) who was a Swiss psychiatrist describes as the grief process which includes: Denial, Anger, Bargaining, Depression, and acceptance, but it should be noted that not everyone is able to work through all these stages.
For Health Professionals it can challenge our emotions and how we deal with difficult conversations whilst trying to support a person with a positive approach, at the same time feeling inadequate as we cannot “fix” it or make it right. What we need to remember is that this is their journey, and we are on it with them and a respect for their wishes and needs is paramount to their care. There may be questions on where to die? What happens when I die? what happens after I die? Who can I talk to about support for my family and my cultural beliefs. It is a gentle balancing act to ensure that information and support is provided but at the pace and depth that a person wants. Listening is key when trying to navigate the complex process of “the end of life.” We will not always get it completely right, but we do our best with love and respect.
These are some of the wishes made to me throughout my nursing career caring for people in their home, hospice, community settings and acute care.
George loved to have his little dog snuggle up on the bed with him, Audrey loved to listen to classical music with her husband, John enjoyed having his friends around his bed having a drink together and Heather loved to have a massage in her bed and then drift off into a relaxed peaceful sleep.
“You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.”
Cicely Saunders
Nurse Consultant
MCM Canada