Do they still recognise you?

[LadyLouise]

As another member poignantly posted on this thread, the pwd no longer recognising us is so hard.

Being a long distance carer visiting for months at a time for my mom in the States, I often get casual questions from friends and acquaintances. The most common is

Does she still recognise you?

I hate this question and resent the person for asking it. It’s painful to think about and complicated to answer meaningfully.

If someone’s loved one has definitely permanently stopped recognising them, then it can only be a painful reminder.

In a lot of cases, it’s probably highly variable depending on the day or moment.

Whatever the situation, the question doesn’t capture the subtlety of the care relationship. You are privileged to share someone’s life and can have deep moments of connection with them, that shouldn’t be judged on whether they technically recognise you. There are so many times of real togetherness, during which I have no way of knowing whether mom recognises me, but that doesn’t diminish the specialness of that moment.

I know people are well meaning and maybe don’t know what to say, but I just wish they wouldn’t ask this In such an off the cuff way.

 

[DaftDad]

People don't think before they speak. They don't stop to consider how they would feel about being asked the same thing. You don't have to answer and in fact, you could reply to explain that you find the question upsetting. Only by showing people the error of their ways, can they mend them. E.g. I am a wheelchair user and random people ask me why I am in a wheelchair? What happened? Can I do XYZ? I reply to say that I don't want to talk about it and then I ask them if they wish to tell me about their private medical history. They usually go bright red, look embarrassed and stop asking questions. When I was first a wheelchair user, I would give some answers but I realised I was just perpetuating poor behaviours and so I stopped enabling it. I hope that people who have felt uncomfortable with my responses now stop to think before they ask about the medical history of the next person in the supermarket queue or on the bus!

As for the question does my Dad recognise me, he does and he doesn't. He recognises my physical appearance, yes. However, he doesn't recognise my name when it flashes up on his phone screen and he answers the phone (if he remembers how to answer it) as if I were a stranger "good afternoon, Mr. X speaking." He signs his emails to me and my brother with his full name, not Dad any more. And not even Daft Dad, which is what he used until fairly recently (hence my username). He doesn't always recognise my voice either, e.g. when carers put me on the phone to him. I have to explain I am N, his daughter. It's only after I explain who I am, that he accepts it. But in person, he is still OK with me and my brother. He can no longer apply the right names to his three grand-daughters, aged 7-11. He calls them all "little girl". He knows he has grandchildren called A, B and C, but he cannot apply the right name to each child.

 

[karaokePete]

I have a tale to tell that I think encapsulates this complex issue.

About 19mths ago I drove, with my wife, to the GP's to pick up her scripts. We were then on the way to the pharmacy when this conversation arose, my wife spoke first:

Do you know something?

I know a lot of things, whats on your mind?

This will change things. (that got me interested!)

Oh, what are you thinking about?

Are you married?

Yes.

(my wife burst into tears)

What's wrong M?

I wanted to marry you!

The fact is that when names/relationships are forgotten the feelings often remain. It was nice that my wife still had her moral code and still wanted to marry me.

I love telling people that tale.

 

[LadyLouise]

People don't think before they speak. They don't stop to consider how they would feel about being asked the same thing. You don't have to answer and in fact, you could reply to explain that you find the question upsetting. Only by showing people the error of their ways, can they mend them. E.g. I am a wheelchair user and random people ask me why I am in a wheelchair? What happened? Can I do XYZ? I reply to say that I don't want to talk about it and then I ask them if they wish to tell me about their private medical history. They usually go bright red, look embarrassed and stop asking questions. When I was first a wheelchair user, I would give some answers but I realised I was just perpetuating poor behaviours and so I stopped enabling it. I hope that people who have felt uncomfortable with my responses now stop to think before they ask about the medical history of the next person in the supermarket queue or on the bus!

As for the question does my Dad recognise me, he does and he doesn't. He recognises my physical appearance, yes. However, he doesn't recognise my name when it flashes up on his phone screen and he answers the phone (if he remembers how to answer it) as if I were a stranger "good afternoon, Mr. X speaking." He signs his emails to me and my brother with his full name, not Dad any more. And not even Daft Dad, which is what he used until fairly recently (hence my username). He doesn't always recognise my voice either, e.g. when carers put me on the phone to him. I have to explain I am N, his daughter. It's only after I explain who I am, that he accepts it. But in person, he is still OK with me and my brother. He can no longer apply the right names to his three grand-daughters, aged 7-11. He calls them all "little girl". He knows he has grandchildren called A, B and C, but he cannot apply the right name to each child.

Thanks for your reply and the explanation of Daft Dad which is so endearing! I can only imagine how frustrating it is to be continually asked about being a wheelchair user. In my paid job I’m a PA for a person with a disability. I get casual questions about this too which I can’t answer because confidentiality, for example about how my client survives economically. If people thought for a moment, they would know better than to ask. I will have to do what you do and calmly but firmly let them know that the question is intrusive and inappropriate. What I’d most like people to know about dementia is that there’s no black and white, there are no lines in the sand. Caring can be heartbreaking, stressful, enriching and meaningful. My relationship with my Mum can’t be measured by arbitrary labels.

 

[LadyLouise]

I have a tale to tell that I think encapsulates this complex issue.

About 19mths ago I drove, with my wife, to the GP's to pick up her scripts. We were then on the way to the pharmacy when this conversation arose, my wife spoke first:

Do you know something?

I know a lot of things, whats on your mind?

This will change things. (that got me interested!)

Oh, what are you thinking about?

Are you married?

Yes.

(my wife burst into tears)

What's wrong M?

I wanted to marry you!

The fact is that when names/relationships are forgotten the feelings often remain. It was nice that my wife still had her moral code and still wanted to marry me.

I love telling people that tale.

Oh that’s so beautiful 😍

 

[Sarasa]

The second to last time I saw my mum I kissed her as I left and said 'love you mum. She replied 'I love you too.' At the time she didn't really know who I was or make much sense when she spoke, but she still knew she knew and loved me and that was enough.

 

[LadyLouise]

The second to last time I saw my mum I kissed her as I left and said 'love you mum. She replied 'I love you too.' At the time she didn't really know who I was or make much sense when she spoke, but she still knew she knew and loved me and that was enough.

That’s so lovely Sarasa!

 

[Genie4U]

The second to last time I saw my mum I kissed her as I left and said 'love you mum. She replied 'I love you too.' At the time she didn't really know who I was or make much sense when she spoke, but she still knew she knew and loved me and that was enough.

That’s soooo beautiful ❤️💜❤️

 

[KatieSimpson]

I just put this on another reply,;

On the face of it, my mum’s forgotten who I am - she’s always asking me to check things with her daughter while I am with her. Fortunately she seems to like the daughter and often tells me how wonderful she is 😂 But simultaneously seems to know me very well, holding both the memory of having a daughter and the knowledge that the me actually present with her is someone important that she knows well. I feel that the problem is she doesn’t recognise me (I look too old?) rather than having forgotten me. I think of it like old photos fading - the pictures, names, labels are gone, but the feelings are still there.

 

[Clarrisa]

As another member poignantly posted on this thread, the pwd no longer recognising us is so hard.

Being a long distance carer visiting for months at a time for my mom in the States, I often get casual questions from friends and acquaintances. The most common is

Does she still recognise you?

I hate this question and resent the person for asking it. It’s painful to think about and complicated to answer meaningfully.

If someone’s loved one has definitely permanently stopped recognising them, then it can only be a painful reminder.

In a lot of cases, it’s probably highly variable depending on the day or moment.

Whatever the situation, the question doesn’t capture the subtlety of the care relationship. You are privileged to share someone’s life and can have deep moments of connection with them, that shouldn’t be judged on whether they technically recognise you. There are so many times of real togetherness, during which I have no way of knowing whether mom recognises me, but that doesn’t diminish the specialness of that moment.

I know people are well meaning and maybe don’t know what to say, but I just wish they wouldn’t ask this In such an off the cuff way.

I agree. I find that question so upsetting and insensitive. Every time people ask me how my mum is they ask that question. My mum does recognise people. Yesterday, a relative said… ‘ but as your mum recognises people, does she actually have dementia? 🙄

 

[LadyLouise]

I agree. I find that question so upsetting and insensitive. Every time people ask me how my mum is they ask that question. My mum does recognise people. Yesterday, a relative said… ‘ but as your mum recognises people, does she actually have dementia? 🙄

Oh, dear. I do wish people would tame the trouble to inform themselves 😔

 

[LadyLouise]

I just put this on another reply,;

On the face of it, my mum’s forgotten who I am - she’s always asking me to check things with her daughter while I am with her. Fortunately she seems to like the daughter and often tells me how wonderful she is 😂 But simultaneously seems to know me very well, holding both the memory of having a daughter and the knowledge that the me actually present with her is someone important that she knows well. I feel that the problem is she doesn’t recognise me (I look too old?) rather than having forgotten me. I think of it like old photos fading - the pictures, names, labels are gone, but the feelings are still there.

This is such a good way of putting it. The relationship can go beyond surface details.