Terminal illness is never easy to deal with, but at least with some you know what you're getting, how long it will be. With this, you never know on either score. I think to be honest, the people we love who have the disease are depending on us to be brave, deal with what comes and let them go with as much dignity is left to them when the time comes. Not that that one is particularly easy, as sometimes you have to fight hard for them and trust that you knew them best to know what they'd want.
So, to tell you a little about us. My mom is almost 57 and was diagnosed at 54, so we're almost three years on from diagnosis. It took two years to get the diagnosis, after she'd had what felt like every test known to man, although she'd been having memory problems for about a year before that that was diagnosed as depression and she was given Prozac. Not much use if you forget to take them though, huh? Anyway, I am her sole carer (A 34 year old single, with no life!), as my sister lives just over 150 miles away and to be honest I think she's still in denial even now, and either can't or won't cope with what's happening to mom. As she sees her perhaps every couple of months, she always sees a massive change in her and that frightens her, and also makes her dread coming so sometimes she chickens out. I get that, and I forgive her that, as I'd be the same if I wasn't dealing with it every day. I read a very interesting post about types of help and that the one which says "I wish there was something I could do" is one not to bother with at all; so true of my sister, and although I love her dearly I can't help but think that when my mom's life is over so will my relationship with my sister. She still seems to look to me to provide support for her (me being her big sister and all) when she needs it, and I always try to provide it, but without her understanding that sometimes I don't always have enough left over emotionally to do that.
My mom does have the option of going to the local hospital day care (It's a Cognitive Function Unit , so used to dealing with people with AD), but as she has early onset, she's with a bunch of seventy to ninety year olds and she hates it, even though I take her and pick her up and let her know I'll be back later. The staff say she seems to enjoy it while she's there, but can refuse to co-operate with things like them taking her to the toilet. It's really hard work to try to stabilise her mood after she's been as she is just agressive with me for leaving her there, and as it takes me so long to try to calm her down it's not worth doing any more. If the point comes where she doesn't know where she is, then it may be time to try her with day care again. It's a difficult call, because although she can't get dressed or undressed by herself, won't remember to go to the toilet unless regularly taken, eat, drink, wash or go to bed by herself and talks to herself out loud (Sometimes having both ends of a conversation with herself) almost all the time, there are the odd moments when you can sometimes glimpse that she's still in there and it breaks my heart. I miss having conversations with her, and even asking her if she's hungry, thirsty or tired is beyond her comprehension so requires me to always be that one step ahead of her. You get really good at watching, observing and trying to make the right call. I sometimes feel like I've disappeared and I'm just a more able extension of her. I'm sure there are others of you out there who also find it nigh impossible to focus on themselves, as so much of your daily activities, thoughts and feelings are given to caring for someone else, that you never consider yourself and let's be honest, there's usually no time or energy left over to do that anyway.
Coming here helps enormously though, so thanks to everyone who's let me know I'm not alone and that what I feel is pretty normal!
Thanks
Cat