Karen Tighe, trustee at St Luke’s, talks about What You Can Do as part of Dying Matters Week 2017
. Read the first part of her blog here
So then, how can friends and family help the person who is life limited? The key thing is to take the patient's lead in terms of how they are dealing with their situation. Remember their confidentiality. It is their situation and they need to be the one who tells people, unless they specifically ask you to inform specific people on their behalf.
Don't say things that clearly aren't true. Don't say what you wish for, ask the patient what things they like to hear, equally ask them what words or phrases they don't like and try not to use them. This is hard and requires discipline, but will really help. I have found it particularly annoying when people say to me I "will beat this". I constantly tell people I don't consider this a battle. But also I have an incurable disease that will eventually kill me, so for me the focus is extending my life for as long as possible, making sure that my pain is managed effectively and generally just having fun.
Performing practical tasks, like driving them somewhere, cooking a meal, doing some cleaning or helping with the garden are really helpful, especially when the patient is tired. But just sitting talking about and not shunning the topic of being life limited is also really important. Your friend or family member will tell you if they don't feel like talking about it.
One of the most important and helpful things you can do, is retain a sense of humour. Laughter helps when someone is feeling ill as well as if they are feeling down. It does actually help your brain release endorphins, which gives the brain a natural high. So feeling better without pills must be worth it.
Friends and family need to support each other. You know I feel it is harder for close family; spouses, children, parents have to not only deal with how they feel, but they must sometimes, feel like they are walking on eggshells round their loved one. The patient knows exactly how they feel about themselves and is in control of what is going on in their own mind. The poor friend or relative has to manage how they feel themselves, but also trying to support the patient is also hard work. There is more 'worry' for the loved one than the patient and so sometimes, the patient needs to provide support to the friends and family. That mutuality of support helps both the patient and the carer/friend/family member and is made so much easier if honesty and openness about the reality of the situation abound.
Taking your closest loved one to appointments is useful on two levels. One, you get to hear exactly what the clinicians say and act as a second pair of ears. During appointments, you often get so much information given to you, you can't take it all in and having someone who listens carefully and that you can discuss with later is incredibly useful. I never go to any appointment on my own now and am so thankful that my husband, daughter, sister-in-law and close friends have been able to provide me with that support.
Finally, make sure you say the important things that need to be said. The gift that knowing when someone is going to die means that you can say these things and you are not left with the feeling of I wish I had said xxx.