Expert Q&A: Rare dementias - Tues 3 March, 3-4pm
Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.
You can either post your question >here< or email them to us at email@example.com and we'll be happy to ask them on your behalf.
Certainly I reckon I've been dealing with it in my mother since around 2004. So about 13 years and looking back possibly some indications prior to that. My aunt was more than 6 years in the most severe stage, bed-bound, unable to communicate, swallow etc.I would be interested to know if anyone on this forum has been watching this disease unfold for 14 years or more - probably in addition to another 4-5 years on top if we count in the earliest problems? It feels like a very long road at times.
Actually you're not alone with those 'dark thoughts' Lulu. I often think my mother could easily outlive me and have funeral arrangements/ funeral flyer on computer for my husband/children to follow, both for myself and my mother.Thanks for your responses - nothing unusual in this, then, the length of time. Izzy I followed your posts for a long time and I felt at the time that our experiences were very similar. I knew your husband had died, but not as a consequence of a choking episode. It must have been an awful shock. For my Mum, living with us for over 10 years, I had wished to care for her to the end, but her behaviour became such that this was not going to be possible as her behavioural symptoms were (and are) extreme. Apart from her dementia she has no additional disease that we are aware of.
In asking how long is the disease process, it may seem that I am waiting for her to die, and though this would be the kindest for her, I don't want to be without her. I am beginning to wonder if, though, she will actually outlive me, and am thinking I should leave instructions for just that event. None of us know of course, but I have always tried to think ahead on most issues where possible and I hadn't accounted for that possibilty that I may go first.
Rather dark thoughts today, on such a beautiful day!