wings and things

Dementia’s grief

on October 30, 2017

Despite the fact that I am plodding rather clumsily through my grief about Anthony’s death, I still retain a fascination with Dementia and its impact on those who have it. So, yeah, it isn’t just about me and my own grief; of course not!

It has only just struck me now that Anthony’s increasing confusion over the last several years was exacerbated by his grief about this confusion. He never seemed to know he was confused because the dementia was so gradual and, again, I think this was a blessing. However, there were times when he did understand that something was wrong.  I always reassured him of course but every now and then he would give me ‘the look’ as if to say, “do you think I am stupid, Jules?”

The love, longing and anxiety I have felt for so many years now was probably exactly the same for Ants but he had forgotten how to express it. He was as lonely for me as I was for him; after all, we had known and loved each other for 40 years.

My point here is that people with dementia are not just ‘people with dementia’. In other words, there is a whole swirling, twirling world of emotions and experiences that preceded the dreaded diagnosis.

Anthony’s grief on entry to the nursing home was palpable and it nearly destroyed us emotionally, but we did get through this heart-breaking decision all those years ago. Ming barely remembers as it was the same week he had his first surgery for scoliosis.

But Anthony put Ming’s health first and I will always be grateful for how he knowingly sacrificed his own emotional well-being for the sake of Ming. Despite being in the early stages of Dementia, Ants did know that respite in the nursing home might evolve into permanent care, which is exactly what happened.

I can hardly bear to think about how grief-stricken Anthony must have been at the time, despite his dementia-induced confusion.

And I think it is worth re-emphasising here that people with dementia also suffer grief.

12 responses to “Dementia’s grief

  1. Julie, I for one am so glad I found your blog. It has really educated me about dementia and I now know about different forms and people aren’t just lumped together. I have just returned from cutting the fingernails of a patient who I knew before the dementia struck. Because of your information, even though she doesn’t speak, move or open her eyes, I still talk to her and tell her what I am going to do and chat about old times. Just think you have helped a lady half way around the world. Keep going friend

  2. susanpoozan says:

    You have such a good grip on the problems of Dementia, I am sure that you are a great help to other people grappling with the same issues.

  3. ksbeth says:

    yes, you are so right –

  4. This is something everyone should read, to try and have their own understanding. You and Anthony are still teaching us Julie.

  5. Vicki says:

    After seeing a film on Dementia (or was it Alzheimers – a form of Dementia – I can’t remember), I always imagined it must be awful to know you were losing your memory and ability to perform simple tasks.
    I suppose one can only guess how scary it must have been for Anthony. He was very lucky to have such a devoted family and regular visitors to reassure him for the most.

  6. Judy says:

    You are so loving and compassionate, Julie. Take good care of yourself. This is a tough time in your life as you navigate your raw grief.

  7. Oh I am sure that we suffer the loss of our memories and the loss of “how things used to be.”

  8. They certainly do. I know that my mother stopped speaking because she realized that the words that came out of her mouth a lot of the time… were not what she wanted to say… Diane

  9. Reading this brought to mind a comment that my uncle made when my nan (his mum) went into the nursing home, he said “it’s not going to bother mum, she isn’t with it and won’t know” this statement really upset my mum she felt like because their mum had Alzheimer’s she didn’t have any feelings. Which of course she did, she just couldn’t express them

  10. Very good points. My aunt had Alzheimer’s and saw the same thing with her in the early stages.

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