Loss and grief is a normal part of accepting a terminal illness. It is more often associated with death, and this can make the experience of loss in dementia even more difficult, as we don’t accept or validate that what we are going through is a grieving process. Grief after a diagnosis of dementia is not very different to any other loss, and includes: shock and denial, fear, guilt and anger; it is normal to feel anger about what is happening, and in the early stages is a big part of grief. It is important to help people with dementia find ways to overcome the anger and replace it with positive and meaningful activity and positive thinking. Bargaining also takes place, e.g. if I do this, it won’t happen or I will get better, and is another normal part of grief. Depression can be a part of grief; it needs proper assessment; it may not need medication as it is also a ‘normal’ part of the grieving process; management through positive activity and counseling may be more productive. Reflection also becomes a significant part of the grieving process. Loneliness (we feel very alone when first diagnosed) is a significant part of grief too, and is added to by the stigma of dementia. The trauma of anticipatory grief for future losses is also a significant and constant progression in the earlier stages as people with dementia slowly lose their abilities; there is a constant fear of what function or skill will I lose next? Many people with dementia will eventually find acceptance, the last stage of grief.
Having insight is vital to acceptance, but in the face of dementia, can be terrifying as with insight, one must face up to what is ahead. However acceptance is the final stage of grief, and it is important to help the person with dementia and their family to get there. Like Viktor Frankl, it is important for the person with dementia “to bear witness to the uniquely human potential … which is to transform a personal tragedy into a triumph, to turn one’s predicament into a human achievement.” Itzhak Perlman, the violinist who needs crutches to get on stage said, It is the artist’s task to find out how much music you can still make with what you have left, and people with dementia have a vital task to find their own music on their journey with dementia. Like him they must struggle to cope, to create, to live their ordinary lives, despite our limitations. They can discover new talents, focusing on relationships, emotions, spirituality, rather than on cognition. By assigning cognition a secondary place, being content with a new life, they can enhance these other aspects of their humanity. Many can also identify with Basil Hume, when he was diagnosed with cancer: I have received two wonderful graces. First the time to prepare for a new future; Secondly, I find myself – uncharacteristically – at peace. It is through finding meaning in life, even with dementia, that it is possible to create a new sense of becoming and overcome the intense fear of loss and death.
Oh Kate what beautiful words, I hope we can all continue to make our music as gracefully as you
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Yes, being at peace is so important to all aspects of our lives!