wings and things

Who am I?

on February 23, 2016

No matter how prepared for it you are, it still comes as a shock when a person you love stops recognising you.

When Ming dropped in to see Anthony on his way home the other day (it was early evening), Ants didn’t know who he was but guessed that it might be S, his youngest nephew.

I told Ming not to take it personally and that lately Anthony sometimes disassociates me from Julie and will ask me where she is. This lack of recognition doesn’t hurt at all because I have been half expecting it anyway and it is very easy to convince Anthony that I am Julie. But of course Ming was, understandably, hurt and perturbed.

In this final phase of Parkinson’s disease dementia, Anthony is experiencing paranoia, delusions, hallucinations and extreme confusion. Now that he has so much trouble speaking (physiologically and cognitively), I am getting better at listening to his whispered fears.

Anthony: Watch out for those boys.

Me: They aren’t boys – they are the nurses looking after you, Ants!

Anthony: Are you sure?

Me: Yes!

Yesterday it was me, my mother, Ming, and multiple staff, popping in and out of his room, enabling his grin but, after individuals left, Anthony would ask, “Who was that?” – even about people he has seen daily for years.

It is quite possible that one day I will go in to see my husband and he won’t recognise me, but I have decided not to worry about that day. He is still in good physical health (well for an 80-year-old!)

And even if he doesn’t recognise us as us, he will still want Ming’s boisterous hugs, my double-handed hand holding, my mother’s silent knitting, and the banter of the staff at the nursing home.

Who am I?

I am the person who reassures Anthony that the farm is going well, that the money situation is fine, that the cows are being milked by an amazing team, that there is plenty of kerosene for the Aga, that his mother is fine, that I will buy a mango for tomorrow….





20 responses to “Who am I?

  1. misifusa says:

    Sending you a big healing hug. I love your attitude, but I know how hard it is. xo

  2. Who am I? You are all of that and more Julie. You are the woman who loves fiercely, cares deeply, speaks softly and listens with an open and loving heart. You are the mother of his son, the wife of his dreams, the woman who makes his world a safe and caring place.

    You inspire me.

  3. Beautiful, beautiful love.

  4. tersiaburger says:

    I will never forget – With Alzheimer’s my dad woke up in a strange room every day. To reduce the trauma I ensured that I woke him with a cup of coffee every morning. One morning when my dad woke up he said “I don’t know who you are but you must love me very much. I see it in your eyes…” It is all you can do is love Ants unconditionally. Strength and light my precious friend.

  5. Terry says:

    That, on point, is the biggest difference in my eyes between Parkinsons and MSA. The memory stays in tact with MSA. I so hoped you would never enter this stage. You are strong, but there is new feelings that arise, when suddenly, your beloved may not recognize you. My heart hurts for you and Ming

  6. It’s an awful disease. I wish you lots of strength. Seems you already have it.

  7. susanpoozan says:

    Sorry for Ming but impressed by the things you say to reassure Anthony.

  8. Judy says:

    This sounds hard, even when you think you’ve expected it. I’m with you as you put on a smile and offer Ming reassurance. Inside, I feel your devastation and emptiness.

  9. ksbeth says:

    i remember a social worker telling me that one day, my mother wouldn’t recognize me as me, exactly, but as someone who she knows she cares about and who cares about her. it was hard at first but at least i knew she knew someone who cared about her was there to see her, no matter the name.

  10. It is very hard when a loved one does not recognize you. Thinking of you and how brave you are and how positive you keep. You are an inspiration to us all.

  11. Vicki says:

    Not being recognised must be incredibly painful for Ming (in his youth), but I hope he will eventually accept that it is inevitable in dementia.

    Acceptance of the inevitable still doesn’t make it any easier for him (or you). There’s really nothing you can say or do to help Ming go through his Father’s deterioration except be there to listen to, and share, his grief.

  12. tootlepedal says:

    Not a bad person to be all things considered.

  13. I can’t think of a better way for anyone to do as you have done all along. Julie, you grow as you see Ants changing … and when the time comes … you seem to know what to do instinctively. I want you to know that I admire you greatly. You love your husband, you are there for him … you make his life better every day. I can’t say I’ve known many people to be that dedicated. I am the kind of person you are … you are the kind of person I look up to. ❤ Gloria

  14. Yeah it would be a shock, and yes it would be hard on Ming when his father doesn’t know who he is but there is little you can do about that it is just part of the horrible disease he has

  15. paulaacton says:

    I had this with my grandma towards the end of her life, I found it easier to deal with than some of my siblings, in our case she knew I was a relative but got confused about which one I was and also got lots of other things confused, I think the reason this is one of the hardest part is in grief we cling to the notion no one can take our memories of the good times away but to see them strip from the person we love and shared them with can be devastating, especially when they still remember other people. My heart breaks for Ming going through this but as strange as it may seem it can also be a time for him to learn so much more about Ants, in those last months with my grandma she might not have been sure who I was but she told me so many stories about her childhood because they were the most vivid memories for her, so in a way we were still creating new memories together.

  16. susielindau says:

    You really are an amazing woman. I hope they find a breakthrough with this disease. It’s bad enough without the dementia. My dad had so little blood flow from a bad heart, he had it too and yet those last hours, he looked at my mom and knew exactly where he was and who was there with him. It still gives me shivers.

  17. I’m so in awe of you. It’s so hard to do what you do and stay so positive. Sometimes, near the end, my mother would recognize me and sometimes not. That actually didn’t bother me, but when my company frightened her or upset her because she didn’t know who I was, that was difficult. But you’ll cope with that, too, in the wonderful way you cope with everything. You’re amazing.

  18. Miriam says:

    I stumbled across your post which caught my eye as my mum is also at a similar stage after a couple of failed brain operations last year. It’s a hard thing when they can’t remember us and can’t speak so we don’t even know what they can remember. Sending you warmest wishes as you continue on your difficult journey.

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