The moment hit me hard, watching my mum with Alzheimer’s moaning in her sleep. She kept waking slightly, opening her eyes, looking at me, muttering things I couldn’t make out, struggling to cough. I just wanted to comfort her, say the right words to help her but that’s when I realised that my love feels like it’s not enough.
The Connection I Can’t Provide
I know that language is only one of the ways to communicate with someone with dementia. But it’s one of the deepest connections for mum and one that I can’t provide is giving her religious support, because to be blunt, I never really learned. I know the basics of my religion, my faith but if I’m asked to recite a particular verse for a certain situation, then I’m stumped.
And that’s really important now, because it’s about the deepest kind of connection for mum—her spiritual comfort is anchored in religion, and where she turns in moments of struggle. And I just realised that I can’t provide that reassurance that she gets from religion.
So that night, in that moment, I knew THAT I wasn’t enough for Mum anymore—not at this stage of her dementia.
Faith, Memory, and Loss
Her faith has always been the centre of her life, but dementia has changed that. She doesn’t pray anymore, but you’ll catch her saying parts of religious verses. Mum rarely speaks English now; she’s reverted to her mother tongue. These prayers, though, are part of her. But I don’t know enough or have the breadth of knowledge to bring her the right words at the right time. I don’t know the prayers and can’t just read them—they’re written in Arabic.
And so I find myself asking: Should I step away for her benefit and let someone else care for her?
The Limits of Love
I don’t want to do that. But the tools I have—my love for her, my presence, my hands, my voice—no longer feel like enough to soothe her. She’s moving into the advanced stages of dementia and deeper into her own world.
I’ve always believed in the power of presence. That just being there was enough, especially as others walked away. I never thought this one area would be one that made me question myself. I’m not overly religious; I have my faith, and I thought that would be enough.
But watching her try to sleep, hearing her restless sounds, coughing and struggling to regain control made me realise my presence and love isn’t enough. It doesn’t comfort her in the way it used to and how she needs comfort now.
Grief and Guilt
It feels like a failure—not being able to give Mum what she truly needs. I’ve tried to learn different approaches. I’ve whispered gentle words and offered the comfort I know how to give, stroking her hand, talking to her. But it’s not the same as hearing a familiar prayer, the melody of faith spoken in our native tongue.
I can’t bring her that. And I hate that I can’t.
Seeing her change as Alzheimer’s progresses, I’ve realised I may no longer be the person she needs the most right now.
Should I Step Away?
There’s a part of me that clings to the idea that if I just try harder, learn more, I can make this work!
But there’s another part that knows this isn’t about me. It’s about Mum.
She needs someone who can meet her where she is now. Someone who can soothe her by reciting the words of our faith with confidence, who can give her spiritual comfort.
Is it enough that I give her everything else I can? I’m still learning, I’m always reading, learning more, even now.
Her well-being is the most important thing to me but admitting that I might not be enough hurts more than I thought it would. This isn’t about my pride or my guilt. It’s about mum.
The Uncertainty of What’s Next
Am I the right person to care for her now? Is it more important for her have someone who understands her prayers, who can navigate her spiritual world with the same ease she once did.
Even as I sit with these thoughts, the decision feels impossible for me to make. I haven’t stepped back, and I’m not sure if I can—or even if it’s an option. Who could step in? Who would be willing to do this full-time? What if they can’t meet her other needs as well as I can? What if stepping aside makes things worse?
I don’t know what to do!
Thoughts & Emotions
Right now, I’m just trying to make sense of this and attempting to take my feelings out of the equation. I feel guilt for even thinking I might not be enough, and for considering leaving her to the care of others.
Sitting here, airing these feelings, is the only step I’ve managed to take so far. I don’t have a plan or a clear path forward. All I have are these thoughts and emotions.
I’m hoping sharing this will give me some clarity—actually writing down what I’m feeling: guilt, shame, selfishness, tearfulness, love and more.
I hope clarity comes soon. Doing the right thing is best for mum. Maybe I’ll reach out for help. Maybe holding on a little longer is the right choice. Or maybe the answer will be something I haven’t even considered yet.
Seeking Your Thoughts
What do you think? Am I making more of this than I should? I really need some help. Let me know in the comments—I’d appreciate it.
Thank you.
Only you can decide. But can you discuss these who come to assist. Those careworkers, if you still have them? Is there someone you know who speaks your mother’s tongue? Maybe they could come once or twice a week to recite some words for your mum and see how that goes.
What you are thinking and feeling, you are doing for your mum. You are certainly not overthinking it and it only natural to have these concerns at a difficult time. X
Thank you Liz, yes, I will explore someone coming to visit her to recite prayers, thanks for the suggestion.
You are an incredible daughter and carer to your mum. It is only natural that you feel angst around the religious aspect of your mum’s life if you feel unable to support this aspect of her well being as you support all other aspects of her care so brilliantly. But please don’t beat yourself up about this. It may feel like a big thing to you, but you aren’t failing her in any way. Are there prayers or readings in Arabic online that you could play to her? Or is there an Arabic-speaking friend or family member, or someone locally, who could record some readings for you? It is admirable that you feel so passionately about ensuring that every part of your care is person centred. Your mum is very fortunate to have you looking after her. I’m not saying that professional care will never be needed for your mum, but no one else could provide the level of care and love you do.
Thank you Kate, that made me cry, thank you for the suggestions, I will get some readings recorded that’s a great idea as night time is when she needs the most reassurance especially if she wakes up during the night, which is happening every night now that’s probably what’s brought up this all up for me. Thank you again appreciate your kind words and the ideas.