It seems to me we sometimes get stuck on things that don’t matter, or aren’t as important as we think they are, and then we lose perspective.
Many people are devastated when their loved one with dementia no longer recognizes them. Very early on in the game, I got to a point where it didn’t matter one way or the other. I’ve rolled that around in my mind for a long time. I found asking myself questions like these helped; I thought they might be useful for others too:
20 questions to ask when a loved one who lives with dementia doesn’t recognize you
- Do babies recognize and call by name those who care for them?
- Does the fact that babies do not recognize their parents as individuals cause their parents to love them any less?
- What kinds of things do babies sense from those who care for them?
- Are those things contingent on babies recognizing who cares for them?
- What do I feel when the person I love who has dementia does not recognize me?
- What is at the core of my upset when my loved one with dementia does not recognize me?
- Is recognizing me going to make their life any better?
- Does not recognizing me make their life any worse?
- Do they not recognize other people, or is it just me they don’t recognize?
- Does it matter if they don’t recognize other people?
- How important is it for the people in my life who have dementia for me to “see” them?
- Based on the behaviour of my loved one with dementia when s/he doesn’t recognize me, does not recognizing me or others seem to cause them a great deal of lasting pain and/or suffering?
- How important is it at this stage in my life for her/him to “see” me?
- How important is it for people in general to be seen?
- If it is important for people to be seen, why is it important?
- If I don’t see and love the people who are close to me who have dementia, who will?
- What would happen if I let go of my need for them to recognize me?
- What does love mean to me?
- What does compassion mean to me?
- What is at the core of being human?
Please share this link with others if you think it might be helpful to them. You may also download a PDF here: 20 Questions to Ask Yourself When a Loved One Doesn’t Recognize You Anymore.
© 2015 MyAlzheimersStory.com All Rights Reserved
https://myalzheimersstory.com/2015/01/21/it-doesnt-matter-that-mom-doesnt-know-me-anymore/
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My Alzheimer's Story 
You are right about worrying about things that matter. Is your loved one content? Safe? Well taken care of? Not in pain? Maybe happy even?
Gregory still recognizes me but sometimes it takes him a while to focus on my face and then I get, “Oh it’s you!” and sometimes, “Oh my, wonderful!”
I tell visitors, Gregory may not know your name, who you are in relation to him, or how he knows you. But he does recognize that you are a special person to him and that you love him and that he loves you. You will always get a smile or a comment. That’s all that matters, isn’t it?
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Yep. You hit the nails on the heads 🙂
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please help me with the “right” words to this comment from a sibling, “I just can’t bear to see Mom this way. I want to remember her how she was.”
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Hi Nance,
I guess everyone deals with these kinds of situations in their own way.
Some people really can’t bear to see other people change, whatever the changes might be; some people want things to always remain the same even though in reality that’s impossible.
Some people don’t have an empathetic, sympathetic, or compassionate bone in their bodies – I know that be the case because I’ve seen it myself in all kinds of situations throughout my life.
I understand how many people really do find it unbearable to see someone they love change in ways they believe are painful and debilitating. I also understand what it feels like to be helpless in the face of someone’s suffering – having to watch others suffer is torture for me.
I also know we cannot control others’ behaviour. The only person we have control over is ourselves – and sometimes we don’t even have that!
I think the “right” words in any situation are the ones that come from one’s heart, and I don’t know what’s in yours. You have to explore that yourself.
If it were me, I would say something like this:
“I understand how you feel. It’s really hard to watch Mom decline and not be able to do the things she used to do, or to relate to me in the same way she used to. I feel sad that mom is ill. Really sad.
However, I have found a way to see her as she is now from a new perspective. Not as someone less than who she used to be, but as someone different than she used be.
And yet, despite that, I still see her core and her spirit which to me remain the same. I’m happy and grateful I can still connect with her and keep her company at this time when I believe she really needs me.
I think about what she would do if I were sick, or facing a challenge, or whatever. And even though it’s hard, I want to hold her hand because I think it’s the right thing to do and because I love her.
I think about what I would want if I were in her place and I try to do the things that I would want done for me – things I believe will bring her pleasure and make her feel joyful.
I understand you don’t feel the same way I do, and for you it’s too painful. My wish would be that you would try to see her in a different way, as the person she used to be and still is at the core of her being. But I understand if you’re not able to do that. Just because I wish it, doesn’t mean it will be so.
I also remember Mom as a vital, engaged, dynamic person full of passion and energy. And I still see her as all those things despite this disease.
I want to celebrate who she is right now as well as the person she was yesterday, last year, 10 years ago and even further back. I don’t believe this disease can take away who she is or who was. I value her as she is, just as I also cherish the memories of who she was and the relationship we had. I don’t believe she’ll be dead until she dies. I understand it may be too painful for you and I’m sorry for your pain.”
That’s what I would truly feel in my heart, and that’s what I would say. And I believe we have to search our hearts and speak our truth, and once we do, we must then detach from the outcome of speaking our truth.
If you speak your truth, I think you may become more free to joyfully do what you must do with and for your mom because you won’t waste energy trying to force your sibling to behave in the way you think he or she should.
What is right for you may not be right for them. They know what’s best for them. Everyone has to lift their own life.
That said, it’s a different situation if the person has legal responsibility for your mom and is neglecting her care in some way. That’s a whole other kettle of fish…
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Oh thank you so much. I have always been a caregiver type of person so I am very comfortable in my role, and I am also very accepting of my siblings’ roles. I do worry that they could have regrets, but you did express what I have in my heart. Again, thank you for sharing and for putting into words what many of us are thinking.
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Thanks Nance ❤ I guess if they have regrets, the regrets will be theirs to own ❤ Thanks for following and commenting, I appreciate it.
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What is a name? Aren’t we more than our personality? Aren’t we ultimately beings of light and love?
And if we are recognized as that, isn’t that enough?
My mother doesn’t always remember people around her, and she did forget who I am once (so far), but it didn’t freak me out. I felt bad for her.
At the end of my grandfather’s life he thought I was one of his long dead sisters. Didn’t upset me, kind of felt good as it made me feel a part of a long line of my ancestors.
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Heidi, I think you’re right – who we are is so much more than our name. Maybe not being recognized in a superficial way is an opportunity and invitation to deeply explore what it really means to be a self.
I love that you felt part of a long line of ancestors. That’s such a cool idea and perspective. I’m going to use that also.
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Just remember one thing. Dementia is a disease. Always have patience. After losing a loved one 3 months ago with Dementia, the one thing that I always remember is that no matter who they recognize, even if they can’t remember you, you know who they are and you stand beside them and protect them and love them till the end of their days. They have no control of this disease.
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“You know who they are.”
Yes. The person is not the disease.
Sorry for your loss and thanks for sharing your thoughts ❤
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I’m 100% with Michael ( above ) on this one –
They may not be able to know who you are in relation to them – but they definitely can recognize kindness – this is inherent in all ” beings ” humans and animals.
And at the end of the day that’s all any of us want – kindness and love.
XOXO
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Yep! 100% spot on ❤
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Good questions to ask. Gregory didn’t always know my name but when he did use it, that made me feel good for a long time after.
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Yes, Michael, I know what you mean… ❤
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I’ve taken some time to dig around in the resources and archives on your site this afternoon and have had such a good visit here. I love the questions on this list, reading them and thinking about them from the “other” side of things. I also enjoyed the conversations in the comments section. Very heartwarming. 🙂
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Thank Lemony ❤
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Hello Susan!
I love the baby analogy you made about a person suffering with dementia, specially Alzheimer´s.
I also think that we do not have to let the caregiver alone.. they also need our support and by having the excuse of not going to visit my love one with dementia due to ¨it is pointless because they do not recognize me anyway¨ would leave the carer alone too. We need to ask them what do caregivers want or how they feel too. They do need our help in this though process. Regards 🙂
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hi Iris, yes I believe we also need to give care partners support. I have an article about that here: https://myalzheimersstory.com/2016/02/18/dont-give-advice-to-people-who-are-drowning/
thanks for visiting and subscribing, I hope you enjoy the posts and that you will comment again in thefuture 🙂
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