I was sitting in the lobby of an assisted living residence when a resident met his son at the door, hugged him, and asked, “Where’s Mother?”
“Mom’s dead, Dad,” said the son. “She died three days ago. Don’t you remember?”
“What, mother died?” he said, grief and panic written on his face.
Less than a minute later, he asked again. “Where’s Mother?”
“Dad, she’s dead. You sat next to me at the funeral. Don’t you remember?” This time from the daughter-in-law.
“What, she’s dead?” Again, his face was a mask of grief.
I wanted to stop the son and say, “No, he doesn’t remember, and your reminding him is making him face the news of her death again and again. Can’t you see that?””
Of course, it is easy for me to give advice. I am not the son who has just lost a parent, and whose living parent cannot even comprehend it. I wondered, how do you tell a person with dementia about the a death in the family? How do you help a person with dementia grieve?
Deciding whether or not to tell them
Experts agree that just because a person can’t remember the name of a missing loved one, does not mean they can’t feel that loss in their lives. What’s different is how they react to loss. A person with dementia may express grief as agitation and restlessness. They may sense that something isn’t right, or that someone close to them is missing, even when they can’t remember who that person is. A person with dementia may confuse the present loss with an earlier one, or be unable to retain the information that the person has died. Nevertheless, in most cases, experts say it’s better to share the news of a death than to pretend nothing has changed.
How to share the news
Have a familiar, trusted person share the news in a calm, clear manner, preferably with few people around. People with dementia are affected by the emotional climate of others, so being surrounded by grieving family members might cause them to respond with increased agitation and restlessness.
Avoid abstract concepts like, “passed away, “is gone”, “is at peace now,” or “is with God.” Simply state that the person died. Keep sentences short, and only provide information that is necessary at that time. The person with dementia may have enough trouble comprehending the death and does not need to know details about the funeral. Allow plenty of time, and be prepared to repeat information frequently as the person will need time to process it.
Planning the Funeral
Individuals with dementia usually benefit from participating in the rituals of death, although these rituals may need to be modified. For example, having a private viewing rather than a public gathering. People with dementia tend to behave appropriately at events such as funerals. They seem to recall the conduct required at such occasions and take cues from the setting and from others.
After the Funeral
Reminiscing provides comfort to everyone. Use photos and tell stories. Help the person express their grief with phrases like, “You sound like you really miss her,” or “Tell me what you miss most.”
Even with all of the above gestures, there is a strong possibility that the person with dementia will continue to ask for the person who has died, wanting to know where they are and when they will be back. For some people, a gentle reminder will work, but for others, like the man in the story, being reminded that the person has died is greatly upsetting. With each reminder, it’s as if they are hearing the news for the first time. Family members, coping with their own grief, have a hard time accepting that their father or mother cannot remember that their spouse has died.
If this happens, give yourself some space and try a different approach. Tune into the emotion beneath the words and respond to that emotion. Often, this overrides the need to have the question answered. “You sound like you really miss her.” Tell me what she was like or what you miss most,” or share your own loss, “I miss her too.”
If reminiscence and responding to the emotion are not working, as a last resort, try distraction. Distraction does not aid the grief process, but may reduce the stress of the moment and allow you to face the challenge in a better frame of mind.
Death in a family is always hard. Helping someone with dementia deal with death adds stress to an already emotional situation. It is important for family members to have good communication so that everyone uses the same techniques and approaches. Be patient, give the person with dementia time, and give yourself time as well.