When your loved one is experiencing deteriorating health, it’s useful to plan for the worst. However, some people may be very reluctant to discuss their preferences around place of care, care priorities or funeral wishes. It’s still important to at least try to have these conversations, even if it feels difficult to broach these topics.
One way of starting these conversations is to discuss their priorities for living well. What do they enjoy? How would they define a good day for them? Despite their worsening health, what helps them remain who they are? From these conversations, you can discuss how you might support your loved one in living as well as possible in line with their priorities, even if you have to plan for the worst. This may include discussions about support they need to access enjoyable activities, where they want to be cared for if they can no longer care for themselves and preferences about how they spend their time.
Your loved one may enjoy walking in the local park and whilst they are still able, you can walk with them. If walking unaided becomes difficult, they may benefit from using walking poles or a walking frame with a seat on for them to rest at intervals.
Further on in time, they may only be able to access the park using a wheelchair, but at least with your help or someone else, they still get to visit the park and enjoy fresh air. It may eventually only be possible to sit outside for a few minutes or even only by an open window. Still, all of these are aimed at getting as close as possible to your loved one’s priorities.
If their preference is to remain in their own home, you could consider the options and possibilities to support this. Could you, other relatives, friends and neighbours help by regularly visiting, following a rota plan, which gradually increases the support as their health deteriorates?
This is what we did for my Mum in Law because her priority was to keep her independence and stay at home for as long as possible. As her health worsened, we visited more often for longer each visit. We also got more help for managing her pain from the local MacMillan Nurse. Towards the end of her life, nursing help was also provided from district nurses. Three of us provided 24 hour care using a rota for the last couple of weeks of her life. She died at home, in line with her wishes.
However, it’s worth discussing alternative options if remaining at home might become impossible or very difficult to manage. It could be you’re the only one who can support your loved one and you have health issues yourself. Or maybe their health condition worsens and they develop difficult to manage symptoms, or need 24 hour care.
Knowing what other options are available in their local area before they require more support can be really helpful. Doing a bit of research to plan for the worst and before a decision is required to find out about possible alternatives, can help make that decision easier if or when the current arrangements stop working.
I look at many more areas that are useful to discuss and consider planning for in my book ‘Moments of Meaning; Living Life Whilst Facing Death’. Planning for the worst, hoping and living for the best can be a helpful way of managing changing circumstances, whilst still living as well as possible.