In the shoes of a person with dementia

How would you feel being diagnosed with dementia?

Last week I had the great pleasure to meet in person the wonderful Gill from Whose Shoes. It inspired me to pose a few simple questions to invite you to feel what it feels like in the shoes of a person with dementia.

Would you like the idea that you are losing your ability to recall or remember your own life, your children, your friends, the things you did five minutes ago?

Would you like being so confused you can’t navigate your way anymore, some days, not even in your own home?

Would you like not being able to read any more?

Would you feel upset about not being able to spell or write properly anymore?

Would you like not being able to recall the names of artists, paintings, musicians, songs, places you’ve been before?

Would you feel vaguely challenged not being able to speak properly, or at all?

Would you feel inadequate not being able to do simple mathematics or use a calculator anymore?

Would you want to live in an aged care facility, a home where you have no key to the front door, and a home where your rights are conditional and you have to become institutionalised?

Would you like not knowing what to do in the toilet, or on the bus, or at the dinner table?

Would you feel happy not knowing who it is on the end of the phone when you pick it up?

Would you like losing your driver’s licence and having to rely on others for transport?

Would you like not being able to go shopping alone anymore, let alone get yourself there independently?

Would you like others to assume you are no longer competent at anything?

Would you like to be 100% wrong, all the time?

Would you like being confused about how to make a cup of tea, or in what order to shower or get dressed?

Would you like it if people constantly challenged your diagnosis, with comments like, ‘but you don’t look sick’, or ‘your doctors must be wrong’, or ‘you can’t possibly have dementia if you can still function’?

How would you feel if you were fighting hard to stay as well as possible for as long as possible, and someone said, ‘your wasting your time, dementia will get you in the end!’?

How would you feel if you were referred to as a symptom, e.g. a wandering or aggressive, rather than the person you still are – mother, daughter, friend, nurse, wife or husband?

Would you like the fact you have been diagnosed with a terminal illness, and there is NO cure, not even on the horizon?

These are just some of the things people with dementia are faced with each and every day, along with the intense isolation, the stigma, the discrimination, the loss of self and identity, the very prolonged and complicated grief, and the feeling that your world is disappearing right in front of your eyes.

Sunday 25 August 2013: On further reflection, I decided to add a couple of questions above, plus below about how it ‘feels’ to have dementia, a response I wrote to exactly that question on The Dementia Dialogue some months ago.

As I try to describe how dementia feels to me, it is not so much the actual ’symptoms’ I think about. When I forget something or can’t recall the name of a person or a thing, I feel annoyed with myself and humiliated. When I walk around in circles starting jobs and often now never quite completing them, I feel frustrated, and if others are home, I feel embarrassed and humiliated. Many things happen when I am home alone, but I rarely talk about them as I feel embarrassed and humiliated.

It is not like being woken up from a deep sleep, but feels more like I am inside a Gravitron, one of those awful rides at the Annual Show, the one where you get in, stand leaning against the backwards sloping wall, and then it spins rapidly pinning you to the walls through the force of gravity until your head spins and you feel sick, or get sick. The head spin of dementia is not dissimilar to the Gravitron experience. When I am in a group now, I simply cannot keep up, so responding or joining in is difficult as I can’t work out what everyone is saying. It makes me feel lonely and isolated, even though I’m with friends. Oh and also humiliated and embarrassed.

I gave a title to my dementia journey – “My Unseen Disappearing World” – because until quite recently most could not see the ‘paddling below the surface of the calm swan’, as I was working so hard to hide the symptoms of dementia. Now that others are seeing my paddling, and my words are more often not coming out as they should, it feels humiliating and embarrassing.

Early after diagnosis my children used to jokingly introduce me to their friends as the Dementor in the family. In fact if you have seen the Harry Potter movies, the Dementors represent perfectly in a visual way how it feels inside, as if the dementia is sucking the life and goodness out of my soul.

I have used that analogy almost since initial diagnosis, so when working on a presentation last year I decided to look up what the Harry Potter wikia site says; A Dementor is a Dark creature, considered one of the foulest to inhabit the world. Dementors feed off human happiness, and thus cause depression and despair to anyone near them. They can also consume, leaving their victims in a permanent vegetative, and thus are often referred to as “soul-sucking fiends” and are known to leave a person as an “empty-shell”. For me, this says it all.

This question has been quite difficult to answer, but has forced me to face up to a few things and more fully explore my feelings. Sometimes when I blog about the tough stuff, my husband feels very upset, but he is also thankful that for now I am accepting of dementia and so willing to share it, as it helps him be more loving and supportive. If he came home and I was just angry or in denial, it would be a huge strain on our love and relationship. Throughout the maze of dementia, I would still like to be able to hide the symptoms of dementia, especially from others!

So as I explored further how it feels to have dementia, I think it boils down to a few constantly recurring feelings – confusionfrustrationhumiliationembarrassmentlonelinessisolationanger or irritation (which can lead to denial) – a deep sadness – and last but not least, worry, because I am constantly faced with an ever changing playing field, never knowing what function is going to become impaired or lost tomorrow.

21 thoughts on “In the shoes of a person with dementia

  1. Dear Kate,
    I’m writing from far a way, but still feel a want to comment. We entered the world of dementia through my mother in law. I was moved by your writing. and I deeply admire your courage both for way you face it and for sharing it with us. Million thanks

  2. Thank you being generous with your experience. The description of it feeling like a dementor will stay with me always. Wishing you love and the ability to enjoy all you can.
    Audrey

  3. Reblogged this on Whose Shoes? and commented:
    Here is an extremely powerful blogpost by my Australian friend Kate Swaffer: “In the shoes of a (wonderful, inspirational) person with dementia.”

    I am very honoured to have Kate’s permission to re-blog it here as deep food for thought. It is a “must read” for anyone who wants, or indeed needs, to understand more about the remorseless disease that is called dementia – and how it actually feels to be living with young onset dementia.

  4. Wonderful blog Kate. As i read i relived everything my Dad has gone through and continues to go through. Not just questions relevant to the person with dementia but ones a carer should think about deeply, in order to have a greater understanding.

  5. Kate – may I use this in some volunteer and staff training information??
    Words from someone “in those shoes” are a million times more valuable than those of the “professionals” xxxx

  6. Agree with all these comments, Kate. We need a button that simultaneously “likes” (and hugely admires) your courage and honesty and “hates” the disease and how it affects people and their families. You certainly do have a wonderful gift, Kate and you are using it so well to connect and share and spread deep awareness. I would like to re-blog this as an “in my shoes” blog next week if I have your permission. xx

  7. Kate, recently at a conference, I was asked “what is it like to have dementia?” I must say, this post is an EXCELLENT way for people to reflect and then be able to answer: what is it like. Great questions to help in contemplation!

    – MB

  8. For a nanosecond I was going to press like but then realised that I didn’t like this blog. As much as I try to understand how terrible it is I realise that I cannot appreciate how difficult it is for you. So I support, love and try not to marginalise you. xxx

    • I’m glad to say I don’t feel too bad about it these days, and have well and truly found the ‘gift’ of having a diagnosis of dementia. However, it is important to say it like it is, as that is the only way others have any chance of understanding. You are one briliant BUB and the best husband and friend in the world… love you forever xoxox

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