Keep Dreaming

I am very happily married to Peter Watt and have two sons, Charles aged 22 and Matthew aged 23. I was born in 1958 in a small country hospital and grew up in a farming community near Cleve in South Australia. Diagnosed with a rare younger onset dementia when I was 49, possibly semantic, my life has changed in ways that are hard to understand, and challenging to live with.

I went from being a highly functioning person able to multi-task and with an exceptional memory, to one often unable to complete one whole task. My days start with maps, pictures of who I am meeting and many other strategies for coping with, and more importantly, hiding the disease. I try to hide as the symptoms are embarrassing and demoralizing. Speaking and thinking is difficult. The acquired dyslexia feels paralysing; the search for words, the meaning of words, remembering faces, is all now a major challenge. The thought that, one day, I may not be able to speak at all looms heavily. The feeling that my life is slipping away from me is almost tangible. Losing my legs and arms or my sight or hearing might be better than this hideous disease. I used to think “if only someone would tell me it is just depression or some bizarre mental illness… anything other than dementia”. It feels as if my soul is being sucked out, one small piece at a time, as my world slowly disappears.

My social life has decreased. The stigma of having dementia means that a large proportion of the people who were our friends, no longer visit or invite us to things. Ignorance and stigma are still such a big part of dementia. As my new world evolves and the old one slowly disappears, the trepidation grows. It is as if I am drowning, with everyone looking on, and me just out of reach. The intensity of my fears and grief is hard to ignore as I face a world that is spinning past me, taunting me to remember, to recognise it; teasing my mind in its capacity to function.

Many of my relationships have changed, especially those very close to me, and my family has been greatly impacted by this disease, although to see us together most people would never know what is happening in our private world. My parents are devastated at the thought of visiting me in an aged care facility. My children try to act as if nothing is wrong, and manage any obvious changes as best they can. My husband lives with an ever-deepening sorrow as he watches from the sidelines, trying to support me without ‘minimising’ me. He tries to hide or block out his grief as we strive to live the best way we can, but I can see the intense sadness in his eyes, feel it in his hugs, and see it in the way he sometimes sits and holds his head in his hands or stares at me when he thinks I am not looking. He said to me recently, I know I am losing you, and I am afraid of what the future holds. Our philosophy now is to try to live in the present and be happy and enjoy every single moment; to hang on to our love rather than waste our time now being sad and fretful.

Initially, my husband and children felt over protective of me, and tried to take my life over for me. This was done with good intentions, and no mal intent, but was not helpful. If I stop doing things, I will not only lose my confidence, I will stop wanting to do them. After a couple of years of moving in circles, but in different directions where we clashed all the time, we started to move together. I nicknamed my husband BUB – meaning ‘Back up brain’. This helped him see it was better to work alongside me, rather than take over. My youngest son used the analogy of a back up drive for the computer, something you only need to use when it crashes, and so my husband and kids now watch from the side lines, moving in only if they see me stumbling, or if I ask for help. We don’t get it right all the time, it is a work in progress, but mostly we feel more connected, and our relationships have become more equitable.

We communicate in new ways, and in ways that are much deeper than before as we know we have a finite time left, but not how much. We write to each other by email a lot, and make sure we have family meals together as often as possible. My blog allows them to see into my soul, allowing them a way to be more understanding and sensitive. We would recommend this to every family, and to use a daily diary if the person with dementia is not IT friendly, where visitors and family can also contribute. It is truly a wonderful memory bank. We hug more, we laugh more and more often. My husband calls living with dementia in our relationship as a ‘threesome’, and we all know two is company, and three is a crowd! I have nicknamed this ‘threesome’ The Three Stooges, and since then, my husband has dubbed himself Curly (he has no hair!!), me Moe, and dementia Larry!! Hopefully I don’t start slapping everyone. Laughing a lot is not optional. We cry a lot too, as this helps salve our pain.

Since being diagnosed with dementia, I have shared my personal story about living with this disease, as well as presenting on topics such as Person Centered Care and non pharmacological and positive psychosocial interventions for living positively with dementia.

I have accidentally become an advocate and activist of dementia and am working on multiple projects that aim to change policy and break down the barriers and stigma of dementia and ageing. Please visit my blog to know more about the work I am doing: http://kateswaffer.com/

3 thoughts on “Keep Dreaming

  1. Hola, soy Mercedes Sosa de Argentina. Quisiera saber mas de los sintomas empezó teniendo usted, porque yo tengo una enfermedad que se parece a esta pero, ningún psicólogo, ni psiquiatra me pudo decir bien, pues sus sintomas se parecen a los míos … Me interesaría mucho saber mas acerca de su enfermedad. Contésteme por favor. Muchas Gracias.

  2. Hi, I’m Mercedes Sosa of Argentina. I wonder of YOU having more symptoms started, because I have a disease that similar to this, but no psychologist, psychiatrist could tell me Well, if your symptoms seem to mine … Much interest me more saber acerca of your disease. Answer me please. Thank you.

  3. Hola Mercedes,

    me puse en contacto con usted cuando vi su primer mensaje en castellano, pero su dirección de correo me dió fallo al intentar contestarle directamente. Entonces tradujimos su mensaje y se lo mandamos a Kate. Ella nos contestó en inglés y como ahora he visto que usted también habla inglés, publico la respuesta de Kate en esta idioma. Espero que le sea de ayuda en su búsqueda de claridad y apoyo.
    Un abrazo

    Olga
    Mensaje de Kate:
    Dear Mercedes,
    I recommend you to get information from the Alzheimer’s Society or Association in Argentina – there is bound to be one in her capital city.

    I wrote this some time ago, but felt it might answer your questions just as well as if I re-write something. Please let me know if you think this will help, or if you’d like me to answer it more specifically.

    I wrote an article published in 2008. This is one of the things I said back then:

    ‘My high functioning mind has slipped away, sometimes showing itself like a ghost, trying to tease me into believing it will be okay, but now outside of my reach. My thoughts fly around inside my head like helium balloons high inside an auditorium, also out of my reach.’

    Speaking and thinking is more difficult, the search for words, the meaning of words, numbers and equations are now a major challenge. I am seeing words in strange ways, not as whole words any more but as if they are split into two. The acquired dyslexia is changing terms like Hamish and Andy into Amish and Handy, and colours like purple into orange, or the numbers 89 into 98. It is much harder to hide the symptoms, or to rely on the inner voice I have been using to help me to think and to find the right words to speak. It is harder to process information, to know how to act and to respond, how to behave appropriately and to know what to do in normal everyday situations. Word finding, naming faces of friends or places or things became noticeably difficult. There are many more moments where the ‘slips of my tongue or mind’ are evident and my tongue twists as it struggles with the effort of finding the right words. Studying and writing has been greatly impacted, as it takes many more hours to not only to understand what it is I am meant to do, but then to actually do it. For example it can take up to an hour to make a short email legible. Money and how to manage it has become problematic. I blow dry my hair less often as I sometimes forget how to. I cannot always name a pair of socks. I am forgetting how to cook, even simple things like potatoes. It looks and feels like a swan – calm and serene on the surface, but legs paddling a thousand times faster below the surface to make things ‘look ok’ to others. My abilities are permanently damaged and my photographic memory is dead and buried! I read then I forget… I read then I forget… I read, I take notes, and then I forget…’

    I wrote more recently, ‘I blog, and it is always there!!’

    With love and hope, always.
    Kate