This is the third time I have tried to write this blog, failing on the previous two attempts because I found it too hard to do. But after watching Stand up to Cancer I decided I should knuckle down and complete it this time.
My Sister died in August following a long battle with cancer. As you can imagine it was a terrible time for our family.
However, there were things we experienced in her final days that I felt I wanted to share, as it may help another family faced with the same situation.
1. Don’t feel guilty for acting ‘normal’
The first thing I learned is how to behave at the bedside. At first we conformed to how we thought it should be: hushed voices, not discussing what was happening, a very oppressive atmosphere.
After a while, though, and maybe because of the stress and general lack of sleep, we began to behave differently.
We started to talk more naturally and share stories about things we had done as a family, and although she was not conscious we included my sister in the conversation.
We were also able to laugh, joke and cry freely.
At first I think we all experienced feelings of guilt for being more normal. But we soon realised it was good for us as a family, and more importantly for my sister. She was much more settled with normality going on around her.
2. Always ask questions
It’s very important to ask questions about the situation and not assume everything that can be done is being done.
Sometimes things need a little prompting – pain relief and sedation, for example.
Understanding what can be done and more importantly what the triggers are is important. The medical staff are not always there to observe changes in condition and they need input to help make important decisions.
One of the hardest things we did – but it really helped us to prepare – was asking what would happen when my sister passed away. We probably all had preconceived ideas of what it would be liked based on things we had seen in films and television.
At first it was explained in medical terms, which made us more concerned. But we asked for it to be explained in layman’s terms and this explanation really comforted us and helped us to prepare for the inevitable.
3. It’s OK to cry
As a man of my generation it can be difficult to accept. But trying to keep a stiff upper lip and bottling things up is not good, so if you need to let it out then do so without any shame.
Having said that, grief is a very personal thing and affects people in different ways. So don’t let anyone tell you how you should grieve and don’t feel there is anything wrong if you don’t conform to a perceived stereotype.
And if you need to talk to someone, do so.
4. Do what’s right for you and your family
Don’t worry if others don’t understand why.
The weekend after my Sister died we went away as a family to a holiday cottage that my sister had booked. For us, it felt exactly the right thing to do, as we all knew that is what my sister would have wanted and that she would have been disappointed if we hadn’t gone.
We did all the things she would have liked and had time together to share and reflect on our memories. Some people who knew what we were doing did give some odd looks and didn’t know how to react.
When you are going through something like this you don’t want to be worrying about work, and luckily I was very well supported by my line manager and my team who made sure I had the time and space to help my family.
I am also lucky that I am part of a team where you can speak openly, and in doing so I was very sad to hear that others had gone through similar experiences.
5. There’s no manual for this
My last reflection is that there is no manual to help deal with a terrible situation like this.
There is a lot of help out there from the nurses, palliative care teams, Macmillan and other support groups. I would advise that you utilise everything that is available to you.
In the end, there is no step-by-step guide and each situation is unique and personal to you and your family. There is no right or wrong way to react.
I’ve learned that what’s most important is doing what is right for you and your family… And more importantly for the family member who is coming to the end of their time.
I would never wish this on anyone and I hope that you never have to have the experience. But I hope that if you are unfortunate to be in the same position then my sharing of this blog will be of some small help.
If you wish to engage with SEED directly please send us an email.
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