I’m currently off on compassionate leave as my dad battles through what are probably his final days.
The palliative care journey has been overwhelming for me. It feels unimaginably different from anything I could have anticipated from years of looking at it from the other side of the fence.
So I put my thoughts down in the following Facebook post.
What I’ve learned during my crash course on imminent bereavement.
My toolkit for surviving your loved one being gravely unwell.
1. Do what you can to stop them from feeling a) pain b) anxiety c) discomfort (itch, nausea, dizziness, or anything else). Remember that you can only do so much. There are things that will happen that you will disagree with. Make whatever effort is reasonable to have your opinion heard. Once you have expressed your opinion and heard the response, consider,
a. Is the response going to manage the problem?
b. If not, is there anything reasonable that I can do to change things for the better?
c. Remember that, despite what is happening to you and your loved one, there may be someone else in the ward that is going through the same thing. The nurses are human, and they make mistakes. That doesn’t mean that they don’t care, or are not trying.
2. Enjoy every moment of connection.
This may be no more than a glimmer of a smile, or the tiniest squeeze of a hand. It may feel like nothing to anybody else, but it is a thing to you; it may be a thing for your loved one; and it may be the last moment to remember that you ever have with her.
3. Take pictures. Record video.
It feels morbid. But it’s precious. Anything that you catch of your loved one before they go. Anything.
4. Talk as if the person is there.
Talk to each other. Talk about anything. Don’t stop communicating because there’s a palliative person in the room, but talk about things with the person in mind. Feel free to involve them as a silent member of your conversation.
5. Say those things.
The “I never got to tell him before he went” sort of things.
Tell him you love him. Explain that he’s adopted (if that feels right to you).
Whatever. Don’t let the person die without you having an opportunity to set the record straight. Even a silent witness can be a powerful one if they’re close enough to the incident in question.
6. Don’t break up with your family over this.
You may have an ‘odd’ brother or sister who doesn’t respond in the way you would have chosen. Don’t use this event as an opportunity to break up with your sibling. Chances are that they’re as wrecked by the event as you are. They may just be displaying their own distress differently. Your loved one would not want their own death to be an opportunity for schism within an otherwise functioning social unit.
7. Be kind to yourself.
You will not be able to be perfect. You will find yourself wishing you could have done some thing differently, or used other words. We are all human. Humans make mistakes. Forgive yourself.
8. Pace yourself.
This is a trek through a hostile jungle, not a stroll to the shops. It might take days and days. Work out a rota, and bring in some help. Everybody cannot be there for all the time. You need sleep. You need breaks. Don’t burn yourself out at the beginning, when the need may be much, much later.
9. There’s no such thing as a perfect death.
Things will go wrong. People will arrive at the wrong time, and events will happen when you aren’t there to manage them. Some opportunities will be missed. The best we can hope for is as peaceful a passage as reasonable, where people try their best, and your loved one doesn’t suffer too much. If you manage to get that, then you have got a precious thing
Fraser Gibb is a Consultant Psychiatrist at NHS Dumfries and Galloway