Dementia and anticipatory grief
Recently I was asked to speak on TV about the grief that people feel when they are losing someone to dementia, but that person is still alive. You can be living with someone who has been diagnosed with dementia for more than a decade. In relation to dementia, it’s sometimes called “pre-death grief.”
It is the heartfelt sense of loss that comes when so much of what you planned to do is now not going to happen. The desolation when the person you have always loved starts to disappear and is replaced by a stranger in their body, who thinks and behaves quite differently. The person diagnosed may already be experiencing grief for what they are losing, and this leaves the carer in a position where they are having to manage their own grief, while supporting the grieving person with dementia who needs increasing amounts of care as the time goes on.
“The person diagnosed may already be experiencing grief for what they are losing, and this leaves the carer in a position where they are having to manage their own grief, while supporting the grieving person with dementia who needs increasing amounts of care as the time goes on.”
In a lecture about why people with dementia have “good days” Professor Kenneth Rockwood talks about how disconcerting it is for families when the person for a brief moment appears again, only to disappear. It gives nightmare feelings that the loved one is somehow “locked inside” the host body, desperately trying to get out and communicate, only succeeding once in a while. You may have resigned yourself to the fact that your father or husband doesn’t know you anymore then suddenly in a moment when he seems completely like his old self, he unexpectedly reaches out to you, using language and endearments that you have learned to live without, and then he slips away leaving you behind again. The sense of loss is renewed and even more acute than before. Grieving while exhausted and stressed by caring tasks and adapting to new circumstances is a particular sorrow that is hard to relate to if you have not been through it. Anticipatory grief is when time and circumstances allow loved ones to prepare for grief by talking with the person who is dying. When someone is reaching the end of life with cancer, this might be possible. In dementia, it is probably quite different.
How can you help someone at this time?
Many people want to help but are afraid of saying the wrong thing. This might even lead to reducing their contact. In order to help, you need to reach out, so the person knows that you are available to them. Take their cues about whether they want to discuss their situation, because it might just be that they need distraction instead of talking about it. Being in touch isn’t always about meeting. A text or email, a postcard or letter – any of these can remind the person that you care and that you are there for them and thinking of them at a time when loneliness is overwhelming. You have to judge whether visiting is a welcome respite or an imposition, and it is always worth asking what they’d prefer. The person might prefer to go out somewhere. Focus on the carer and try not to say too much about your own feelings for the person you are both losing or refer too much to your own grief and loss. Comparisons don’t always help.
Some people find it easier to be practical, and you can help by finding out about resources and help that is available at this time, when the person with dementia is still alive and both they and their carer can benefit from them.
There is more information about benefits and other supports in the one-stop guide called Dementia which is available as a paperback, on Kindle and also as an audiobook that you can download and listen to when you are out and about.
