On average, a person with dementia could live for 10-12 years following diagnosis, depending on the particular type. As we have seen in our previous blog entries many of those years can be happy and enjoyable with the right actions, support and understanding. However, none of us are immortal and no matter how well someone has cared for the person with dementia or how much they love them, at some point their dementia journey will reach its end.
This is one of the most critical times for the church in its delivery of pastoral care and where the church often excels. If you’ve known the person living with dementia and their carer for a long time, it can also be one of the hardest times for you as a minister. To help we have written this post to give some useful guidance around some dementia specifics to help in your ministry and to help you support the carer (often husband/wife or family member).
The first thing to be aware of is that to the carer it might seem strange that they suddenly have to let professionals take over where up until this point they have spent so much time caring for their loved one. It is possible that they won’t know what to do, how to respond or even how to behave? Try and support them and reassure them that they have and are doing the best for their loved one.
Whether the person with dementia is at home, in a care home, hospital or hospice, they should receive care which manages their symptoms, pain and provides support. In some ways this should take some of the pressure off the carer but, they find it hard as they often have provided this support up until this point and they are very aware that they could soon lose the one they love.
Here are a few ideas you could suggest:
· Sit quietly with your loved one. Just being there at the bedside can be very peaceful and you don’t have to talk all the time.
· Hold their hand. Gentle touch can provide great comfort, even if they don’t seem to be aware of it.
· If they’re awake, do they have something pleasant to look at? Can they see a favourite photograph (maybe of their family), some nice surroundings like a garden, or a flower arrangement?
· Make sure their room has soft lighting. You may want to have some of their favourite music playing quietly in the background.
· If you feel it would bring comfort, arrange to visit. A member of the clergy/church leader just being present often brings great peace and a feeling of ‘they are not alone’.
As you are no doubt aware caring for someone in the final hours of their life can be a very intense and intimate experience, allowing them to feel a deep connection with the person they love. Helping someone with dementia to experience a ‘good’ death may be the final gift a loved can give. Many family carers say afterwards that knowing they did their best, right to the end, brought them considerable comfort in the months ahead.
If you can help support through these final hours, you will be more prepared for the support that the carer will need following the loss of their loved one. With dementia they may have felt like they had been grieving the loss of the person they loved for a very long time but, the final loss is still always the hardest. To have a pastoral care plan in place to support them from the church would be a real help. People to cook meals, carry out shopping, someone that they know well to just sit with them, all this will really help in the immediate days and weeks after their loved one passes away.