As a death doula I frequently see carers looking exhausted and I am surprised that they often have to be really pushed to take time out for themselves. It is a good sign that they have arranged for a doula or a charity worker/volunteer to come in to give some respite but I wonder how many other carers just don’t do this. So here are my suggestions for some New Year (or any time) Resolutions for those caring for people at the end of their lives:
Firstly, you should arrange to have a break, no matter how small. It could be an extra long soak in the bath or a day’s walking in the countryside. When you look after yourself you will be better able to take care of others. And that small break may help to recharge your batteries so that you are better able to cope with the trials and tribulations of this often difficult time.
Secondly, learn how to delegate. That one bears repeating: DELEGATE! It is so easy to slip into a habit of doing everything and knowing “just how it should be done” that we often ignore or refuse offers of help. If someone asks what they can do to help it’s ok to ask them to take the dog for its shots or to say you wouldn’t mind a hot meal as you’ve slipped into existing on sandwiches. Most people will understand that helping you is helping the dying person.
Thirdly, vent your feelings when you need to. Find that one person who you feel will understand and LEAN on them. You may find that someone who has had the same experience will understand a lot of your emotions and frustrations and so you will feel more confident that they won’t judge you when you need to have a bit of a rant. Carers can find themselves excessively angry at “incompetent” professionals or other family members “not pulling their weight” but this is often displaced anger at their own situation and even anger at the person they are caring for. Remember that dying doesn’t make your critical, overbearing father into a saint: he may still be pushing your buttons but you may no longer feel able to be angry at him. If there is no one you know, find a support group or online message board.
The fourth thing is to accept you are not perfect. And more importantly, stop trying to be! Many of us feel the need to be all things to all people, wanting to be that even-tempered parent, the hard-working employee, the dutiful child and the community-minded neighbour. But taking on the main responsibility for caring for a dying person means that other things may have to move over for a while. If you explain to people they will often understand that this year you can’t organise the Christmas Fayre at church or that you can’t take on any overtime at work. The standards we set for ourselves (and which are reinforced by society) are often ridiculously high and in order to take care of someone we may need to let some things slide for a while. Just tell yourself you will make up the shortfall once your loved one is gone but for now s/he needs your focus and commitment.
Now the fifth one is a biggy – and it overrules all of the above. It is that you must always remind yourself that you have the right to change your mind. Yes, other people will be relying on what you said and people may be disappointed but it is not something you would do lightly. Sometimes we take on something only to find it’s not what we expected or that we just can’t do it. When we make a decision or a plan it usually takes into account what we know now. It considers our previous experiences, our self-knowledge as well as practical and financial implications. But some or all of these may change and it might mean that we need to revisit the plan. Many of us may never have been in the presence of a dead body, let alone one who is in the process of dying.
For example, when my widowed mother was given her terminal diagnosis she was given approximately three months to live. I agreed with my siblings that I would move in with her, leaving my home and going over 100 miles away from my friends and support networks. Six months later my mother was still appearing to be doing well and I had to have a hard conversation with my brother and sister that I couldn’t leave my home and my life indefinitely. It was so difficult for me to say this as I was trying to be the perfect daughter and, in many ways, the perfect sister by taking the load off everyone else. But I was getting lonely without my friends, I was worried that the manager where I did supply work to make ends meet would forget about me and I missed my home. In effect, I had changed my mind about caring for my mother until the end even though this seems a harsh way of saying it. I’m glad to say that I agreed to carry on for a couple of months and was able to care for my mom right up to the end but I think just voicing my desire to stop reminded me that I had a choice about what I was doing and I felt empowered by that.
Caring for the dying is a big ask and these five resolutions could just help you to maintain your own health and happiness. They may also enable you to find some enjoyment and satisfaction during the privilege of being present when someone is at the end of their life.