Please Don’t Ask Family Caregivers This Question!
There is a question I am asked very often when I tell people my mom has Alzheimer’s disease.
They ask, “Does she know you?”
I don’t know how to answer them. And it is a very hard question for all caregivers of dementia or Alzheimer’s patients to answer.
People ask that particular question because it is the one major fact the general public has heard most about Alzheimer’s disease — eventually the patient may not recognize his or her loved ones. There has been more information about dementia made available in the last ten years due to the work of the Alzheimer’s Association, celebrity spokespeople, books, movies and the mainstream media. For that I am very glad. But this increase in knowledge turns out to be a double-edged sword for me, because it leads to that dreaded question being asked over and over again, “Does she know you?”
It is simply hard (if not impossible) to know if our care recipients with dementia still know who we are. And it’s painful to have to face this possibility every time it is raised.
The Answer Changes Over Time
While she was in the early stages of Alzheimer’s, I do believe my mom knew who I was. No worries then.
When she declined into the middle stages of Alzheimer’s disease, I wasn’t sure if she knew who I was. When I’d arrive for a visit, she would respond to my greeting and embrace with smiles, hugs and the appropriate words — “Nice to see you,” for example. But she didn’t use my name in her greetings or conversations. I began to suspect that if any other person came in and greeted her warmly, she would provide them with the same exact friendly response. The replies may have been her good manners and graciousness kicking in.
The question began in my own mind then, “Does she still know me?” You can imagine how painful those thoughts were for me and are for all family caregivers!
After a while I started to greet Mom with, “Hi Mom! It’s Linda,” assuming she’d know who Linda is — after all I’m her only child, her daughter! I thought certainly she would always know the name “Linda” signified me! At least in my heart I wanted to believe she would.
Then one day in the last year, with her now in the late stage of Alzheimer’s, it dawned on me that she really might not know who “Linda” was in her world any longer, as much as I wanted her to. So I changed my greeting to “Hi Mom! It’s Linda, your daughter.” Since she has aphasia and rarely speaks now, I have no way of knowing if adding these words helped or not, but in my heart I still believe when we look into each other’s eyes, she knows who I am.
I guess there will always be some level of denial for me. I don’t want to admit that she doesn’t know who I am. I console myself with the thought that even if she doesn’t know I’m her daughter any longer, hopefully she knows I’m a woman who visits her, spends quality time with her, and cares deeply about her well-being.
When people ask family caregivers if their care recipients know them it is a very hard, and painful, question to try to answer. Yes, people ask out of concern, but honestly it’s better if they don’t ask family caregivers that question at all!
Have you been asked this question? How have you responded? Did you have a hard time answering it? Please share with us in the comment section below.
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Yes, because my wife has trouble remembering names of even people she keeps meeting regularly and depends on me to provide the prompting. This is classic dementia of a type. Naturally, I am asked if she remembers my name or our son’s and there are times when I feel like snapping. I have however found it better to joke about it and have a couple of jokes that I use to change the subject. I am yet to understand what prompts people to ask this question when they know that it is a deeply personal matter. I suppose that people will be people!
I’ve never been asked that question about my mother-in-law by strangers, but have had the conversation with family members.
I guess in our society anything out of the norm is fair game in some people’s books. I remember someone asking me what “good” my handicapped sister was since she couldn’t be a productive member of society.
I had known this person for years and thought we were close friends, but could no longer pursue the friendship after discussing it further and seeing she would never get it.
Hi rummuser,
Yes — It’s worse when they actually have the nerve to ask that right in front of our Golden Oldie. How utterly thoughtless. Humor is a good way to respond. I wish I could think that quickly on my feet.
Hi Mary,
Ouch! What a completely insensitive statement your “friend” blurted out. How cruel people can be, and how stupid as well. How can they think things like that, let alone say them. (cringe!)
Mary, you did the right thing. That person and you were not in the same wave length and it just came out at the appropriate time.
Mom started confusing me with my sis about 2 1/2 years ago. About 18 months ago she hit the stage where she didn’t always know who I was but as I joked with friends, was consistantly nicer to a perceived stranger than to her own daughter(and we had spent our lives as BFFs) Unfortunately moderate stage has brought aggression and agitation. Now I have moved in with mom and she has no idea who I am…ever. In fact, one day in frustration I said…mom, why do you treat me like this? I’m your daughter” And she kindly pointed out that she doesn’t have any children but was sorry if that was what I wished for. Bottom there are worse things than not being remembered. There is nastiness from a loved one. Heart breaking.
Dear Valerie,
I’m sorry I’ve taken this long to reply to your heartbreaking (yes!) comment, but if you’ve read my posts from the beginning of May I’m sure you will understand.
It is very difficult to be a family caregiver under the circumstances you describe. Do you have an Alzheimer’s Association chapter nearby where you can find counseling and support for free? If not, call their hotline (open 24/7) at 1-800-272-3900 and get connected with a counselor there by phone. Other people are in the same predicament, or have been, and can help ease the pain and suggest coping strategies.
As just a start — Try to keep in mind, despite the hurt, all of the unconditional love your mom gave you when you were too little to really know who she was. And now the roles are reversed . . . sad, but it’s often a reality for caregivers of dementia patients.
And one other tip, if the nastiness is too much to bear, it’s OK to leave the room and take a breather, as long as she is left in a safe environment. Do something to refresh yourself and hopefully by the time you return your mom has gotten distracted onto another topic.
I know this is a complex issue, so I hope this is just the beginning of help for you. I truly urge you to contact the Alzheimer’s Association — an excellent free community resource — in person, on the phone, and also online: http://www.alz.org