There is a general rhetoric about people living with dementia that is really disturbing. I read on a so-called “Support Group” about whether one should tell a person living with dementia that someone close to them had died. Just about everyone in this group says NO – “it will only upset them”. That really upsets me… Why do we feel that the person living with dementia does not have the right to know that a husband/wife/child had died? Why should they not be allowed to be upset, and mourn the loss? Is it not patronising on our behalf to withhold the reality of life from them, to lie to them?
This is tricky. I have written about what to do when an 80-year-old says “I must go and find my Mother”. I do believe that this is more an expression of a need, perhaps missing the way their Mother made them feel…
If there is a death in the family of the person living with dementia, I think we owe it to them to include them in all the rituals, to be honest with them. And if they get upset, rightly so. Then we comfort them. I also believe that the more we include them in the rituals, all of them, the more the reality will stick with them and they will know, even if they forget. There is in my opinion a difference between knowing something and remembering – sometimes the questioning has very little to do with trying to obtain the facts. It is often a result of feeling insecure or lonely.
Being part of a family unit that is inclusive, warm, holding, gentle, nurturing, secure and loving, will help the person living with forgetfulness to maintain a sense of Self. I have often been surprised by how acutely sensitive people can become to our body language, tone of voice, and strange sounds or smells. This often leads to suspicion and insecurity, and lots of questions.
Positioning ourselves as Caregivers require a huge amount of courage, often because we have to let go of our own need to be right, to change things or to x. We need to be able to let go of our own ego, to sel essly be there for the person who needs our support. Finding the balance between taking care of ourselves and supporting a person living with forgetfulness is not an easy task. Only if we can honour the person, see beyond the disease, and grace them with respect as a whole person, will we have a more meaningful relationship.
Often, when a person living with dementia can no longer communicate verbally, we also stop talking. I believe that the fact that a person can no longer communicate outwardly with words, does not mean that they do not have the ability to communicate inwardly. In other words, they can take in our intent, our kind presence, our touch, our laughter or sorrow, and our presence. Tell them a story, share your feelings, go for a walk, play music, or just BE with them. The sensory ritual of peeling an orange and sharing it with them, making a pot of tea and drinking it with them, and sitting quietly in a garden watching the birds.
Somehow, I think the challenge is that so many of us find this dif cult to do with those we love who do NOT have dementia. Just being – something so simple, yet so difficult…