Day 11: Dementia Awareness Month – Bob Page’s creative solution to continue to live at home with Alzheiemr’s

Bob Page and his wife Valerie tell their story. I am proud to call them my friends, and have spent much time with them as an advocate and consumer voice for Alzheimer’s Australia, seeing how they support each other with love, equality and honesty in their life together, living with that third lodger, Mr Dementia in their home. Congratulations Bog and Val. And thanks to Genevieve Major for alerting me to this fabulous short film.

<p><a href=”http://vimeo.com/105536369″>S H O R T F I L M | On The Right Track – an Alzheimer’s inspiration story</a> from <a href=”http://vimeo.com/thestoryculture”>The Story Culture</a> on <a href=”https://vimeo.com”>Vimeo</a&gt;.</p>

Bob was diagnosed with Alzheimer’s four years ago. After a bad experience in short term respite, a creative solution was needed to allow Bob to continue living with Valerie in the Perth Hills.

A film by Independent Living Centre WA and The Story Culture | Sept 2014 for Alzheimer’s Awareness Month
Directed / Filmed / Edited by Janetta Hayden | The Story Culture | thestoryculture.com
Interviewer | Genevieve Major (Aged Care Revolution)

6 thoughts on “Day 11: Dementia Awareness Month – Bob Page’s creative solution to continue to live at home with Alzheiemr’s

  1. I get very upset when the focus is on the person with dementia to the exclusion of the carer who is in actuality trapped in the same prison of dementia but with the excruciating agony of knowing everything, not forgetting anything and still retaining one’s brain function. Additionally I find myself fluctuating between feelings of envy and inferiority . Envy that the carer seems to be so happy and inferiority that the carer is better able to manage her situation than I can.
    To my mind the reality of living with dementia is never really openly explored – I live with daily repetition of words and statements, the lack of any meaningful conversation, the pressure of trying to remember to organise everything so that my husband will not be too upset, trying to speak in simple monosyllabic sentences, remembering not to expect to have a conversation, the loneliness and worst of all the ever resent task of trying to be patient. In reality I think it is easier for the person with dementia to live a reasonably contented life than it is for the carer whose life is inextricably chained to their life. It is a prison within a prison for the carer!
    The video made me so angry and envious that I cried and had another sleepless night trying to work out how to make life better and how to become a better carer.
    The best part was watching the lovely dog meandering through the bush content to be the guardian of his master.
    Margaret.

    • Dear Maragret,
      I am so sorry the video upset you so much… and totally agree it is often more difficult for the family carer e.g. the partner/daughter/son. It is always the carers who say we (people with dementia) are suffering – but I believe it is more about their own suffering they are inadvertently referring to.
      Please try not to feel like you are not doing as well because it is not like it seems to be for Bob and Valerie… some of us diagnosed with dementia have actually heard others wished we had deteriorated like their – mother, husband, wife, etc – simply becasue it makes them feel more devastated about their own situation, and envious we are still doing quite well, and deteriorating more slowly. Not everyone does well with cancer or other terminal illnesses either, we do not fit into the same basket.
      You might like to conenct with a carers website, http://www.dementiachallengers.com/ as there is a lot of useful information and support for carers there…
      Take great care of yourself,
      Kate

  2. Hi Kate. Music too loud for me to understand the words of video. As you know this is common with PWD. Gave up trying.
    I self-trained two wheelchair Service Dogs, led group, and represented Srv Dog handlers at the County level. Have considered training a Memory Dog, but have not decided to do it yet. Training a Srv Dog is a huge task and I am afraid no longer have the ability to do a good job of it. One thing needs understood tho. If you are familiar with Srv Dog issues then you will recognize the name of Joan Froling from IAADP. She wrote the following which is very important to remember when it comes to a memory dog. “No dog should ever be expected to function as a babysitter or respite caregiver.” (My own first Newfoundland SrvDog, Hero, was a rescue because being repeatedly hit for allowing the baby to fall down the stairs.) My own conclusion is Srv Dog can help walker find his way home when misplaced, but cannot have FULL responsibility to keep walker from “wandering” — big difference. Dog can be ONE contributor in that effort but must not have full responsibility. Must be clear on tasks required. Very big deal when it comes to a Srv Dog. Joan’s entire letter is here http://www.sterlingservicedogs.org/Articles/WhatCaregiversNeedtoKnow/tabid/82/Default.aspx

    • Bob and Val are a lovely couple… I’ve not had the pleasure of meeting the dog yet though! He is living well with dementia, supported by Valerie and his dog, such a wonderful story of positivity and hope. xx

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