Dementia veteran at 31yrs of age
Hi Lou,
I'm Nat, Dad is 62 had the diagnosis since he was 54, no good news with our story...Dad is now full time in a home, fully incontinent, not able to eat without someone feeding him, not able to talk, very hard to connect with.
I guess like everyone else I'm trawling the internet for that miraculous cure!
God I hope one day that one of us finds it!
He seems so young and is so intelligent that it is a bit of a shock.
Dad still seems young and it still 7 yrs later is a bit of a shock, he was/is a very intelligent man..he just can't show it anymore.
As it seems so early, I wonder if anyone has any tips on what we can do for him while he is still relatively well?
Don't waste time. The tendency is to think, you will see it coming, but just like someone that you know can get fat or skinny without you noticing, so too dementia, one day u just really look at them and realise its too late, even though they're still there...they can't talk, or can't relate to you anymore. I can't say that with enough emphasis - you won't ever think it will get that bad, until its gotten that bad. Don't let it sneak up on you.
I don't know about what you can do for your Dad except, try and understand that if he does things you don't understand or think he shouldn't or wouldn't usually do, that its not him, its the disease. Don't let what he says or does hurt you, its not him its the disease. I see my brother and sister and even my mother waste too much time, mulling over past hurts, or what he 'did' to them in the last few years....nothing is going to fix these things anymore, let them go and just enjoy what you have of him while you can.
Oh and as Zed says, try to let him be independent as much as possible...but also understand that depending on what part of the brain his disease affects, he may now want to be independent he may become massively depressed, he may not want to try to fight the disease...forgive him for this, if this happens.
While he's still well, make sure you talk to him, tell him what you want to tell him, encourage him to talk to you about things you want him to talk to you about. The greatest regret I have is feeling like I never had a 'real adult to adult' conversation with my father. The other thing that haunts me, is feeling like I don't really know who he was/is...I only have my perception of him as a daughter sees her father, memories that are getting dimmer and dimmer as the years pass....I never talked to him like he was just a person.
Take lots of video, take lots of photos, don't ever feel like you wouldn't want to see him like this so you hestitate with the camera....I cry with delight now to see a short 2minute clip of Dad back when he was still able to shave himself but he had gotten it a bit wrong and shaved his sideburn right up higher than his ear (!)...in it, he is standing near my nephew a baby at the time in my mum's arms and you see him, try and reach to touch the baby but miss, he falters, and then you see him catch the baby's eyes and the look of love, pride and delight he has in his eyes while he exchanges a look with him...well its got me crying just thinking about it....I treasure that video now...even though he seemed really bad at the time....he looks wonderful to me now.
And Lou, find that cure!
Medicine today is a hell of a lot better than when Dad got diagnosed...there are various types that can help hold off the dementia...find out about those. Looking for a cure, looking for answers can be a very good therapy for people like us...it keeps us busy, keeps us hopeful, keeps us sane...just don't let it prevent you from getting the most from your time with your Dad now. I don't ever want to steal anyone's hope...I still hope today, though most would say that was ridiculous...just make sure you do allow yourself to imagine what it will mean if you can't find something to save him and then do all the things you would want to do, if that turned out to be the case.
All the best