Updated: Nov 4, 2022
The greatest fear and one of the most heartbreaking moments in dementia care is when a family member, living with dementia, no longer knows your name or recognizes who you are.
It is hard to describe this deep emotional pain, but we can learn how to reduce or avoid the sting and by doing so, we will be able to help our family member feel more loved and safe.
Why this Moment Brings Heartbreak
The moment a family member forgets our name or who we are, is always a very difficult moment. Why?
It is not as painful as the moment when a person living with dementia:
· No longer knows the day of the week
· Is confused and does not know where they are
· Is unable to write a check to pay the bill
· Can no longer cook their special dish
· Does not remember how to call a phone number.
The reason forgetting your name or who you are is so much more difficult, is because we take it so personally. I think that deep down we feel as if we did something wrong that would cause our parent, partner, or other family member to forget who we are.
If we can remove our personal feelings and focus on the person who is living with dementia instead, we will be less hurt and we will be able to be more in touch with what our family member needs, rather than be concerned with our own personal issues. In Validation, we use a technique called centering to clear our own thoughts so that we can connect deeper with the person who has memory loss. By centering, we remove our own thoughts before we even approach our client who has dementia.
When we can center, we will be 100% focused on the other person and in this way will not be affected by the fact that they do not know our name or who we are.
You can learn about centering and how it can protect you from pain in one of my previous blogs If a Person with Dementia Blames You
The Bookshelf of Memories In her book Someone I Used to Know (which I highly recommend that everyone read,) Wendy Mitchell, who is living with dementia, explains what happens to our memories by thinking of them as sitting on a bookshelf.
On the top shelves are our most recent memories and all the way down at the bottom shelf are our oldest memories from when we were a young.
Dementia rocks the bookcase and the books that always fall out are the ones that are on the top shelves, which are the most recent memories. When this happens, what one thinks are their most recent memories – may now be memories that are much older.
As dementia continues to shake out those more recent memories on the top shelves, a person’s memories become limited to those in the more distant past – but they do seem like their most recent memories.
Imagine if someone’s recent memories are now those from 30 or more years ago. Their most recent memories of their children may now only be the memories of when their children were little. When this happens, they would not be able to recognize their young child as an older adult! They would expect to see a young child or youth.
This is why sometimes, a person with dementia might talk about their child to the person who is their adult child – a version that they no longer recognize. This is another situation that can be so difficult for the family member.
Hopefully, by understanding the reason behind their loved one's behavior, the family member can accept this change without taking it so personally.
Emotions Strengthen as Cognition Declines Even though someone living with dementia may not recognize you or know your name, it does not mean that they don’t know you are important to them.
Wendy explains in her book Someone I Used to Know that there is another part of your brain that has another bookcase, an emotional part. This bookcase is sturdy compared to the bookcase of memories that shakes and keeps losing memories. The feelings and emotions don’t disappear.
A person who is living with dementia may forget who came to visit them, but the love, comfort and good feelings stay. Those feelings remain with them even after the visit ends.
Wendy Mitchell also explains that she may not recognize a person who she has met before, but she will remember how she felt with that person.
This is the reason that Wendy pleads to not give up. Even if the person no longer remembers who you are, they will still know how you make them feel. Please never stop visiting a person who has dementia. They still need you and will feel you.
As cognitive abilities decline, a person connects at a more emotional level with others. People with dementia often become more sensitive to others. They can tell who truly cares about them, who is honest and who is just pretending to care.
A few weeks ago I was concerned about one of my clients who has been regressing lately. After not seeing this client for over a month, I did not know how she would react when I visited her at the Adult Day Care Center. I thought we may have to begin our acquaintance from the very beginning again.
When I came to see my client, she took my hand and explained to the others in the room that I am a very dear friend of hers.
When you build trust, when you genuinely care about the other person, they will remember you are someone who they feel safe with. It really is of no importance that they know your name or who you are.
A Person Becomes a Symbol
When the memories continue to fade, a person with dementia may search for a person they once knew. Perhaps they are looking for their parents.
Sometimes a person who has dementia may think that someone else is a parent or a person they once knew. This person than becomes a symbol and represents who they long for. Sometimes this can lead to the person with dementia thinking their own adult child is their parent. This especially makes sense if there is a resemblance between their parent and child.
This can be very distressful for the adult child who may try to convince their parent that they are not their parent but their child. This is an attempt by the adult child to try to feel better, but it most probably will cause their parent with dementia to be confused and upset. Imagine how you would feel if your parent tried to tell you that they are not your parent but your child!
It is so important for us to enter the world of the person who has dementia, rather than try to force them to accept our reality.
So, rather than try to correct, take a breath, center, and allow the person with memory loss to reminisce. In this way you can explore with them what they are feeling and try to understand who or what the person is seeking. If the person with memory loss thinks you are a parent, ask questions about their childhood. For example you could ask:
What was the most favorite food you liked to eat at home?
What songs did your mother sing with you? Then you can sing a song together from their childhood.
By reminiscing and allowing the person to talk about what is important to them, they may not need to seek out a symbol of the person they are longing for in someone else.
Do You Know Who I Am?
Another way to avoid the hurt of a parent not knowing your name is to avoid this situation all together. Sadly I often see family members and even professional carers play the guessing game with the person living with dementia:
· “ Do you know who I am?”
· ” What’s my name?”
· “ What are the names of your children/grandchildren?”
When the person with dementia answers correctly, the person asking may feel a great relief and may be thinking “See, she still remembers me” or “She still remembers the names of my children.”
I understand this need to feel your family member or the person you care for still knows who you are, but these guessing games are unnecessary and certainly are not in the best interest of the person who is living with dementia. These questions can cause embarrassment and confusion which leads to stress. Stress often causes more cognitive decline.
Every time I meet with a client, I always introduce myself. I tell them my name and I tell them who I am. I do not want to make my client feel uncomfortable that they do not recognize me. The worst scenario of repeating this every time we meet is that a client may say “Of course I know who you are!”
By avoiding asking questions about recognition, no feelings are hurt. Not ours and not the person who has dementia.
The pain of a parent not knowing who we are is almost impossible to describe. I think this incredible short film manages to show the hurt in just 3 ½ minutes.
The moment a family member forgets who we are is painful, but we can protect ourselves by:
· Not asking questions a person may not be able to answer
· Clearing our own emotions by centering first
· Understanding that recent memories may no longer be retrieved
---- Our weekly blogs are about understanding dementia, how to communicate better, healthy aging and preventing dementia.
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