It is a tricky decision whether to tell patients who have dementia that their husband or wife of many years has passed away. After all they may forget by the next day and telling them again (and again and again and again) seems like trapping them in some twisted cycle of grief. Yet not telling them robs them of the chance to grieve at all and puts caregivers in a position of continually lying and subjects patients to a diversity of stories that could add to anyone’s confusion.
Your wife is shopping.
Your wife is visiting your daughter.
Your wife is getting the car fixed,… sleeping,… has the flu,…. will be here in a minute….
In my opinion, many people, even with advanced Alzheimer’s, can tell whether they are being told the truth or not and there is some fundamental and powerful human relationship stuff going on, such as building trust (or not) in our interactions.It is a tricky decision whether to tell patients with dementia that their spouse has passed away. Click To Tweet
Here’s what I think we should do in the event of a tragic life event:
Agree upon a finite period of truth-telling. 1-3 days or perhaps a week where staff have a short, truthful, and consistent answer to the question: Where’s my husband?
I’m sorry Mrs. Smith, your husband passed away last week. He had a heart attack and died peacefully in his sleep”
Engage help from the social worker, chaplain, and/or family members. It is hard to quantify the grieving process and provide some exact evidenced-based response, but honoring the human experience of loss seems vital. Shock, tears, increased anxiety are all manageable with a compassionate and skilled healthcare team. There are judgement calls for healthcare professionals such as when to medicate for anxiety or depression and when to simply offer a hug and sit with someone for a few minutes validating their emotional pain.
I’m so sorry, Mrs. Smith. You will miss him a lot.
At some point, the truth-telling becomes more of a tragic reminder and an alternative, consistent story should be agreed upon. The objective is NOT to make someone remember the loss but to allow for the grieving process to occur. There may be levels of acceptance that occur that we won’t be able to measure or document, other members of the community may be able to offer consoling gestures, and new albeit different relationships can form. There are, I believe, changes going on in our cells and in the community that contribute to healing, if we let them happen.
I’ve seen people walk down the hall holding hands. They don’t know each others’ name or diagnosis, but they are connected in some meaningful human relationship. I’ve also spent time with residents as they go through the heart-wrenching adjustment of joining life in a secure i.e. locked unit. Their acceptance is not a constant and yet having been through this process with a number of people, I can attest to a lasting sense of trust and some limited acceptance that at times is quite profound. These are very privileged moments in nursing and I believe part of the art of our work. Your thoughts?