How do I tell mom her brother died?
My uncle just passed away and my mom has dementia. She was close with her brother. He was always there to care for her as she progressed with dementia. My siblings say not to tell her, since she won’t remember. I feel that is not right. What to do?
Dementia is a difficult disease where the individual with dementia and the people who care for them have to suffer through numerous losses and observe many abilities slip away. The additional death of someone close is another loss that is difficult to deal with. Mourning and grief is important to experience and takes time. The individual with dementia may sense that something is wrong, but may not be able to figure it out.
It is advisable to tell a person with dementia that someone close to them has died. If your uncle was in close contact with your mom, it may not be easy to have that conversation, but it is preferable to them feeling sadness and not being able to understand why they feel that way. If it is practical, break the news when mom is rested and is at her best. It is better to be direct and not use language that is ambiguous, like “your brother is at peace.” Give the details that are necessary and answer as many questions as honestly as you can. Use the past tense to reinforce the situation.
It is believed that going through rituals, such as a funeral, can help in the process of acceptance. Have someone be involved with mom on funeral day to help her gain security and a sense of understanding. This person should be available to respond as needed.
Making up a story saying your uncle has just “gone out and will be back later” is not advised. This may end up causing more problems. Some individuals with dementia end up being restless and agitated. This may be a reflection of their worry about where the person is.
Some people understand the change on some level, while others keep asking for the deceased. A lot of support, touch and reinforcement may be needed.
It is often good to respond to the emotional message of loss and sadness. They may miss the person, be concerned or bewildered. Try to support the emotion that you see. If the person is looking for practical tasks that the deceased did, offer to help. Ask: “What can I do that your brother did for you?”
You can share that you miss the person too. It may help reinforce that this is not unique to them, but rather something that the family as a whole is sad about. If mom is not upset, let it be. Just be ready to revisit or deal with the emotion that comes forward.
Discuss this with the family before you embark on this discussion with mom, as it is key that all the family stays consistent in their messaging about your uncle’s death. Getting everyone to agree how to manage the situation is sometimes the hardest part.
Each person with dementia is different in how they respond to bad news. Some individuals move on, whilst others need to revisit the topic and the pain. Responding directly to the pain, confusion or anger is best. Likewise, giving sup- portive statements, such as “you really miss your brother” can help settle the person. It may be a change in routine that prompts the asking. Maybe your uncle always came for tea in the afternoon. That could trigger anxiety. It is hard, but you have to accept where the person is at any given time. Don’t bring reality to the person if they are not searching for it. If they are agitated, sometimes distraction works, but will not help the process of grieving. Use it as a last resort.
Remember, you may also be grieving, so you need to take care of yourself and your own needs. It takes time and extreme patience — both with yourself and your mom — to deal simultaneously with this loss and her dementia. Seek professional help if you feel the situation is too overwhelming, and remember that usually time does heal. Your support is the most important part of the process. Nira Rittenberg is an occupational therapist who specializes in geriatrics and dementia care at Baycrest Health Sciences Centre and in private practice. She is co-author of Dementia: A Caregiver’s Guide, available at www.baycrest.org/dacg. Email questions to caregivingwithnira@baycrest.org