Dementia Red-alert

The increasing load of living with a person with the symptoms of dementia on the BUB (back up brain or carer). The experience of travelling is becoming more difficult, especially for my BUB. He remains on red-alert as my distress levels and confusion go up due to the crowds, the noise and the lack of my…

The Dementia Dialogue

The Dementia Dialogue Two women discuss the disease, it’s impact on their lives, and share insights on ways to minimize the impact of this diagnosis. Through this conversation, they hope to open up the doors to a deeper understanding of their deeply personal dementia journeys. Kate Swaffer: Diagnosed (and ‘living’) with Younger Onset Dementia Kay Bransford: Assisting…

A dementia carer’s guilt

My husband and I have talked many times about the guilt we feel for having placed his father into residential aged care, and in particular into high care for the last 5 months of his life. The term ‘high care’ is a bit of an anomaly, as many ‘homes’ simply do not offer care for…

Stigma… ignorance… stigma… ignorance…

The stigma and ignorance continue. Today I sat through another meeting, where one topic on the agenda was about whether to nominate a person with dementia to join a Ministerial committee, to represent this committee I am on. Sadly, there was not one person there who felt it suitable, and in fact one carer suggested perhaps…

Medication and dementia

Well, it has come to this… I can no longer manage my medications. Even passing over the control of the scripts to my pharmacist and doctor last week is not enough as this does not prevent me taking the wrong time or days tablets at home, or taking tomorrows as well as today’s tablets, today.…

Back Up Brain vs Carer

Recently I gave a second nickname to my DH (dear husband!), which is BUB, or Back up Brain and we find this terminology far easier to live with than carer. We think of a back up brain as being the same as the hard drive in a computer. He said recently, it empowers him to be by my side and with me,…

Impairment in view

26/11/11 – 5.15pm: So, here I am I’m writing for nanowrimo, trying to get to 50,000 words. a novel is something i have always wanted to write and get published. more than one! now the thought is quite scary, as my use of language is so impraied or disabled. remembering the words i’d like to use, the ‘big’…

The nurse in us all

Nurses and carers stay bonded in friendship because we share things that others don’t. We watch strangers die, holding their hands and consoling them and their loved ones. We watch miracles take place as we help babies come into this world, seeing the rawness of love and its pure beauty. Doctors often deliver the good or bad…

Planning my funeral… what a laugh!

Early in 2010, after being told in 2009 I had between 6 months and 2 years to live, I decided to partially pre-plan my funeral, hoping to remove some of the burden that would come immediately after my death. Not everything, but the basic information, which I have found when planning a loved one’s funeral…

Fragile

Today started out with me feeling fragile, fragile, fragile (see my Facebook page). It’s not that I don’t feel like that now, but I laughed so hard for the 45 minutes before my carer left tonight I have almost  forgotten why I felt fragile!! My lovely carer Jodi was here today, and as usual we…