Today, I received a telephone call from a profoundly distressed spouse. She has been caring for her husband, who has been living with Alzheimer’s disease for many years and can no longer cope with what is required. With her children’s support, they have decided to move her husband to a Care Home close to where they live. This is always a deeply traumatic decision, causing distress all around. Her question to me was “do I tell my husband?”.
We should always tell someone living with dementia the truth. The whole truth, and nothing but the truth. Whilst the person living with dementia might not be able to respond to what we are telling them, this does not mean that they do not know what is happening. And yes, it will be distressing. We cannot hide the truth because we think “they do not know”. To be distressed is normal – for all of us. Tell the truth. Also, I think it is so important to share with the person living with dementia how we feel, how difficult it is, and how traumatised or exhausted we are. We owe them that. To pretend that we are ‘ok’ does not help anyone. We do not always have the be brave and strong, hiding our feelings. In my opinion that causes more stress to the person living with dementia than showing our true feelings and emotions.
I have been asked the same question when a loved one of the person living with dementia has died – do we tell them? YES we do. And if they forget and ask again, what do we say? We tell them again. It is their right to know; it is their right to grieve. Why do we think that a person living with dementia should not know the truth, or is not allowed to feel what we feel? They are human, we are human. We feel. In fact, that is the very essence of our humanness, the fact that we feel. Dementia robs the person of much of their being-in-the-world. We should not rob them of more by withholding life from them.
Always tell the truth, no matter how hard it is.