On a personal note
If you ever intend to attend a dementia summit or similar advocacy event and you've had 11yrs of dementia experience and memories (some of which you carefully locked up for the past few years) prepare yourself for the exhaustion and emotional toll it takes!
Immediately after the summit concluded I returned home and promptly went to sleep at 4pm in the afternoon, only to find that I awoke with the beginnings of a sore throat and then ended up in bed for two days with the flu!
It was an emotional experience for me, especially as my journey with younger onset dementia began back in 1997 when internet forums and live support groups did not exist where I was. This was actually the first time in 11yrs that I came face to face with people who were going through what my family went through about 10 yrs ago and I found it....a haunting experience, is the only way I can describe it....
It felt like I had slipped back in time, because the issues these people were discussing and confronting were the same issues of 11yrs ago, the only difference being that now at least unlike my family these people were getting the opportunity to tell their tales and present their concerns to government and many of them were already involved in support groups.
I saw spouses getting frustrated with their partners who had dementia, not yet able to separate the person from the disease (and I don't think that is necessarily possible at this early stage), I heard tales of people being involved in drug trials so full of hope just like we were when Dad enrolled in one back in 2000 (I just hope that the hope is now justified, unlike it was when we did the same), I saw many who were only recently diagnosed and, was unsurprised that of course, that those like Dad who had progressed too far to be able to travel and contribute, were absent.
And it was this absence that made me begin to think....
Absolutely I am pleased with the results of the summit and hope that it brings about positive changes in the system. However I began to realise at the summit that
dementia is like an iceberg...and we are often only addressing the tip of it, unaware like the Titanic that it is in fact the rest of it that remains hidden that can truly wreak havoc....
We all have become very familiar with the need to rid society of the stigma of dementia, to educate people with regards to the realities of dementia, to get society to realise that this is an illness, not something to be ashamed of.
One way many are doing this is by telling their stories, making the disease more public, allowing people to connect with the human beings that dementia strikes....but how do we get society to get over not only the stigma of dementia but
the stigma associated with the profound disabilities that dementia can bring? I believe at present we have only begun working on the first bit and the later stages of the disease, well they somewhat remain back in the dark ages.
This is a complicated problem because once the later stages strike, we cannot decide for those who can no longer decide for themselves, to publicly show how they are now. Also when caregivers find themselves looking after a person at this stage, they too can find it almost impossible to find the additional energy required to advocate for themselves and others in their position. Yet it is the subsequent invisibility of these people that allows society to disconnect from them as people, and as a result their opportunities for quality of life, which at this stage requires external assistance to be maintained, are severely reduced.
I am not saying that improvements aren't being made when it comes to the provision of resources and services for later stage care. I am not saying that advocacy for such issues doesn't occur. I am saying however, that I don't think these issues are being as effectively advocated for as they could be, due not to the stigma of dementia, but due to
the stigma of the physical and mental disabilities caused by dementia along with the terminal classification of this disease. A stigma that currently often remains unrecognised as even being a stigma, because society is so used to accepting the mindset that a person with profound disabilities with no hope of survival has less value, that they cannot even see their own prejudices.
It was acceptable for my father to be left in soiled clothes for hours because of this stigma.
Because of this stigma:
- It was acceptable for a hospital to refuse to care for my father despite a chronic infection.
- It was acceptable for 'care' to be provided in a nursing home far beneath standards that any healthy human being would accept.
- It was acceptable that a medical professional tell my family in front of my mute yet comprehending father that we should stop feeding him and let him die.
- It is acceptable that my mother gets a pittance of a carer's allowance (despite saving the government money by doing so) to look after Dad.
- It is acceptable that friends walk away and we understand that they cannot cope with seeing their loved ones 'like this'.
- It is acceptable that once later stages arrive (and often even mid-stages arrive) that society raises their hands in surrender and says there is no more we can do for you or your loved one, and then so kindly says, that death will be a release.
- It is acceptable that I often get asked to stop upsetting people every time I try to raise these issues (not referring to TP here).
I could go on and on, but I think you get my point. None of this should be acceptable and we need to be thinking of ways, to start making society realise this too. Those who can no longer speak for themselves, those who are no longer listened to, need our help.
