Written by Mike Price, OT
When your parent has Alzheimer’s disease, one of the most difficult rites of passage comes on the day when the person you once knew - the one who raised you, the one you’ve depended on - no longer knows who you are.
As a son or daughter, you stand at the beginning of a new and challenging journey. We hope this article will help you to make sense of the changes, the challenges, and the unexpected moments of joy to be found in the days to come.
On the day a parent fails to recognize you (and in the days to come), don’t be surprised by the stew of emotions that bubble up and potentially even stop you in your tracks.
This is a big one that many children of parents with dementia don’t acknowledge. Alzheimer’s is often nicknamed “The Long Goodbye.” A parent receiving an Alzheimer’s diagnosis can feel identical to losing that parent - not all at once, but slowly, day by day - until the mother or father you knew is no longer there.
If you are the family member living closest to your parent (or are their primary caretaker for other reasons), you may feel terrified at the thought of caring for them as they continue to decline. Will I be able to handle their needs? What if they need a nursing home? What will I do when I can’t do this anymore?
Perhaps your parent hid their declining abilities from you until they couldn’t hide anymore. You may feel angry at them for doing this - “If they’d only told me, I could have prepared more.” Feeling angry is a completely natural response, and is also the easiest place for shame to take root.
Sometimes, you might feel angry at no one in particular; you’re just angry this is happening. You may feel helpless. You may even feel a little childish. This is OK. Losing your parent to Alzheimer’s can make you feel like a child all over again.
There will come a day when - all of the sudden! - your parent is lucid. For a time, they may even remember you. On these days, you might doubt they have Alzheimer’s at all, or wonder if maybe you’ve been exaggerating the problem. When they slip back into their own world, you may be left feeling even more sad and confused than before.
Let’s be clear: you are entitled to feel the full range of your emotions, because everyone copes with loss in their own way. You may even feel so devastated that it’s difficult for you to be around your parent.
While you may know intellectually that your parent is not changing on purpose or with intent to hurt you, getting that knowledge into your heart can be a different story.
Understanding the science behind your mother or father’s failure to recognize you may encourage you to keep trying.
Let’s look at two pieces of science that can help you understand what’s really happening when a person with Alzheimer’s doesn’t recognize you.
The expression “First in, last out; last in, first out” describes how memory loss works in people with Alzheimer’s disease.
Under normal circumstances, our memories are formed in a two-step process, and through using two different areas of our brain.
First, the hippocampus takes in sensory data and registers it. Second, it delivers the processed experience to other portions of the brain, where that information is stored.
With Alzheimer’s disease, the hippocampus area is one of the earliest parts of the brain to become damaged. As the damage compounds, it slowly stops registering new information, and ceases to send new events or experiences to other parts of the brain for long-term storage.
In advanced-stage Alzheimer’s, the affected person may have an experience, but it’s as if the event never happened. A well-known example of this would be when you remind your parent with Alzheimer’s about your visit yesterday, and they are truly at a loss. After all, a person can’t remember something their brain never stored in the first place.
At the same time, the same person will be able to recount events that took place ten, twenty, or fifty years ago. If the memory was stored before the onset of the disease, that memory will be accessible to them.
Recent research at the Universite de Montreal sheds some light on why a parent with Alzheimer’s may not recognize you.
In this study, when Alzheimer’s patients looked at people’s faces presented upside-down, they were able to recognize them with about as much ease and speed as someone without Alzheimer’s.
However, when the same faces were presented right-side up, the Alzheimer’s patients were no longer able to recognize the faces of their loved ones.
Apparently, in order to recognize upside-down faces, the brain must analyze and put together separate pieces of the face: eyes, nose, etc. Alzheimer’s patients can do that.
But to recognize a face presented normally, or right-side-up, the brain must input it as a whole.
It’s this “holistic perception” that is lost early in the Alzheimer’s journey, and prevents your parent from recognizing you when you walk in their front door.
This study provides valuable perspective for children wondering if their parent's memory of who they are has actually disappeared, or if their parent is experiencing a simple brain-visual misunderstanding.
Perhaps it is their perception, and not their memories, that are keeping them from knowing who you are.
So, what if your parent does remember you, but just can’t say so?
What if they can’t assemble pieces together visually, but somewhere deep inside, they know that it’s you?
It is believed that people in a coma can hear the conversations taking place around them. If this is true, how can we know for sure that our parent in an Alzheimer’s “fog” is not aware of what is going on around them, too?
So, what can you do to keep the lines of communication open, even when you’re not sure you’re getting through?
Imagine sitting in your living room, relaxing alone with a book. Suddenly, a total stranger walks into your house, goes into the kitchen, and starts making themselves dinner.
How would you feel?
Confused? Certainly. Angry? Perhaps. Frightened, more likely than not.
These are all emotions your parent with Alzheimer’s may experience each time you walk into their home.
When words don’t work, the senses will. Give your mom a manicure or pedicure. Listen to music together. Bring your parent some aftershave or perfume.
Having a parent with Alzheimer’s is kind of like having a cranky child and figuring out what will soothe them. The answer may be different on different days. But no matter the situation, getting a positive reaction will help you and your parent stay connected.
(Here’s a short video about how music reached in and reconnected one man with his loved ones!)
Even though they may not know who you are, your parent will most likely remember things that took place decades ago. Sharing old photo albums and giving them an opportunity to talk about the people and events within will help them enjoy their interaction with you, and you may learn some things you didn’t know about them.
Why not try putting together a photographic timeline of yourself? Include a photo of yourself (or yourself and your parent) from infancy, early childhood, pre-teen, teen, and young adult years, all the way up to the present.
There’s no guarantee this will completely jog their memory; in fact, it probably won’t. But revisiting the past may allow your parent to connect with you for the moment and offer affectionate exchanges that will see you through the tough days.
In the grip of Alzheimer’s, your parent may say things that are hurtful to you. When this happens, it’s important to let go of the hurt, and remember that it’s not them trying to hurt you - it’s Alzheimer’s talking.
Your parent may complain bitterly that you never call them, when you live in the same house with them. Or, they may insist they don’t have any children. This can definitely hurt - but try and let it go, remembering it’s not really your parent saying these things.
Your parent with Alzheimer’s no longer has a “boss” making decisions inside their brain. Unfortunately, this could mean they will not respond to your logical arguments when they are off the mark or flat-out wrong. If your parent insists that you are their sister, for example, don’t reply with a simple, “No!” Instead, direct the conversation by asking them to tell you more about her.
It’s no longer important that they be grounded in reality. It’s hard to accept this; but if you can let go of hoping your parent returns to mental clarity, chances are your parent will have a good feeling about your time together, and be happy to see you tomorrow - even if they don’t remember it’s you.
As you work to enter this new reality with your parent and also stay connected, it’s important to take a step back from time to time. Be sure you’re treating yourself with the same care and kindness you’ve committed to show them.
Here are a few things to remember:
There will be days when you get frustrated or upset with your parent. Know that you are human. When frustration mounts, either go home or go out. Regroup. Make yourself a good meal. Talk to someone. You’re learning, it’s a journey, and tomorrow is another day.
We all want to be honest, and especially with our parents. But too often, the bald truth can lead to more distress in Alzheimer’s patients, both for them and for you. Does it really matter if your parent believes they are a volunteer at the local library? Why try and argue them out of it? Instead, find out what it means for them.
Watch for signs of depression. If you sense yourself slipping into periods of fatigue, low energy, or apathy, reach out sooner rather than later. Your local Area Agency on Aging should be able to provide some resources.
Seek out other family members and friends who you can talk to for support. Find an online or local caregiver support group to attend. Search out others who are also caring for a parent with Alzheimer’s, and share your stories. Community can’t reverse the effects of your parent’s disease, but it can help make sure every day to come is filled with hope and sustainable joy.
Find more helpful Caregiver tips and products at our Caregiver YouTube channel!
Co-Founder of Rehabmart and an Occupational Therapist since 1993. Mike has spent his professional career working in multiple areas of Occupational Therapy, including pediatrics, geriatrics, hand therapy, ergonomics and inpatient / outpatient rehabilitation. Mike enjoys writing articles that help people solve complex therapeutic problems and make better product choices.
