Hiraeth and dementia

IMG_3655This was brought recently to my attention via social media, either Facebook or Twitter, although I can’t remember which one. I had not heard of the word, or did not remember it, which is not the issue here, but the meaning of the word has been playing with my heart-strings ever since.

Initially it brought me to tears, as apart from a couple of cousins and three elderly aunts whom I love dearly and speak to reasonably often (although I feel a bit guilty, as it is never often enough!), my husband and two sons are the ONLY family who support me, or are connected to me in any meaningful way. Some of my family no longer even speak to us at all, and have removed themselves and their children from our lives. It feels like the word hiraeth also applies to this.

Their loss, not mine/ours is easy to say, bt the impact is not just on me, but on my sons who have basically lost cousins and aunts and uncles in the process. I think this is cruel and unacceptable, but understand there are some things I cannot change, no matter how hard I tried to. I have simply had to adjust and heal, which is a constant journey and process needed to deal with the hurt.

But beyond my immediate family pain and feelings of hiraeth there, my experience of living with dementia also feels like an experience of hiraeth; a homesickness or longing for who and what I once was, who I used to be, the capacities and memories I once had. I grieve for the lost memories and knowledge, the lost places of my past I can no longer recall and that often cause me to feel disconnected from myself and from the family and friends whom do still have a close relationship with me…

The homesickness for a home to which I cannot return, a home which maybe never way; the nostalgia, the yearning, the grief for the lost places of my past… this all relates to my experience of living with a diagnosis of dementia.

14 thoughts on “Hiraeth and dementia

  1. Dear Kate, your insight and wisdom is amazing. I have enjoyed reading your responses to the various questions presented to you. You are an inspiration. I am currently studying BDC at UTAS and find your perspective so enlightening, you give purpose, guidance and motivation . Thank you from my heart to yours. Kathleen

  2. Pingback: Ramblings from the past, as I think about 2017… | Creating life with words: Inspiration, love and truth

  3. Reblogged this on Dealing with Dementia and commented:
    Kate Swaffer is living with a diagnosis of dementia and has eloquently taught me and given me a better understanding of what it’s like to be on the other side of this journey. I immediately connected with this post that speaks of the term “hiraeth” which means homesickness for a home in which you can never return.

    On every visit with mom, I interact with 2 or 3 residents who are trying to get “home.” Some want to know if I can give them a ride, some want to know when family is picking them up, and some just want to know where home is. Shared.

    • Thanks for sharing this Kay… and your thoughts. It was such a relief to find this word, as for me, it says so well what it ‘feels’ like almost immediately after being diagnosed with dementia. I too have seen people in residential care trying to go home, on most days, and for some, all day long!

  4. Kate, a word that has such profound emotion and feeling attached. I am lost for words really… I feel I need to acknowledge hiraeth somehow in my role supporting people with dementia and in educating support workers to better understand the “in my shoes” experience. thank you for your sharing and insights

  5. This is such a beautiful description if a word I didn’t know but now can feel.
    Thank you for my ‘gain’ ,
    Ali

  6. I saw “Hiraeth” somewhere also and it struck me a well. The only comfort I can offer myself (and maybe you,) is that there is no need for homesickness for what was if you can find enough joy in what is. Love you Kate.

    • my dear Michael… I agree with you in some ways, but yearning for what was, as dementia progresses, and yearning for closeness with family, that is no longer, never quite goes away… Love definitely fills the hole(s) and makes it possible to keep living xox

  7. This is an aspect that never entered my mind, thank you for bringing it to my attention. The study I am currently undertaking gives me the fundamental abstract tools to help me better understand dementia but your blog gives me much more than mere statistics and data to interpret. Kate because you share your story we who work in the field are given an insight we would never have known about, so thank you so much. Coralie Matthews, currently studying Bachelor of Dementia Care UTAS.

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