Hello Jessica, and welcome backJessica said:Hello,
I registered in november but this is first time i have been back on (thank you for my replies)
well.. things haven't got any better, my mam has tried 2 tablets that had a really bad effect on her, so much that when we went back to the specialist last week, he said there was only one more tablet to try but that due to her being so sensitive she could not try any others,(she is also on other medication for her heart) he asked if we needed home help but as she isn't at that stage yet said no, my mam was sitting smiling at the doctor saying that she felt well etc etc but i could see she was just willing him to let her get out of there.
He said at the minute there is nothing else they can do for her and so discharged her, and told me to call when i needed. so now it feels that it's left to the family and it is just a waiting game, i love her so much and feel like i want to protect her,I am trying to keep her motivated and to get her in the mood for christmas though i am not myself. i have struggled really hard with this and myself have had to take time off work and am on medication, and i really am trying to pull myself together but i still feel lost, i have brothers and sisters who help but me and mam have always been the closest as i was last at home, i feel so bad as i know the others are upset as well but seem to handle it all better than me, i can't seem to straighten my thoughts about this whole thing, i keep telling myself to enjoy the good days and ride the bad, and with my mam i seem fine as keep upbeat as possible for her, but alone is a different story, anyway sorry to go on.
thinking of you all.
love Jessica. xx
I'm so sorry to hear and feel your heartache, you are doing everything you can but the one thing none of us can do until someone finds a cure or a preventative for AD is actually make them better. Some meds can slow down the decline, but as you have said, they don't suit everyone.
Jessica, you said you are feeling as if you are getting no help at the moment, but look again at these sentences - "The Dr. asked if we needed home help but as she isn't at that stage yet we said no, my mam was sitting smiling at the doctor saying that she felt well etc. ... He said at the minute there is nothing else they can do for her and so discharged her, and told me to call when i needed."
Don't think that just because you have said no thanks to home help (or whatever) at the moment, it's not still there when you need it. When the Doctor said there's nothing else they can do for her, he didn't mean ever. Your Mum will (should) probably go for regular assessment visits, and as things change so will the services which may be available for her (and you). It might be a good idea to keep a regular diary of how your mum is, so that when you do return to the doctor periodically, you have a record of what may have changed (eyesight, reading ability, hearing etc.) since your last visit. Also, make notes of what is said to you at visits to the doctor/memory clinic etc. It's so easy to get distracted (for instance, by a struggle getting into the car) just after the appointment, and forget some of it, especially if you are feeling emotionally upset.
Perhaps it would be a good idea to accept home help now, before the need for it is really desperate, as this would get your Mum used to a non-family member coming & going at her home. This is something which AD-patients often seem to resist at later stages, which traps the carer into a situation where no-one else can relieve them for a break.
I don't know how I can help you deal with your emotional turmoil, except to say that you must learn to deal with it somehow, otherwise you will become so ill yourself you may be unable to contribute to your Mum's care. I think you have to get past the feeling which we all have, of believing that you can beat this thing if you only love her fiercely enough. It's not true. I wish it were, but it's not. You can't lock her away in your heart to keep her safe. Your brothers and sisters may seem to handle it better than you do, but I bet they are shedding bitter tears in private as well. Perhaps it would be better if you actually wept on each others shoulders, and shared & discussed your fears and your grief. Sharing can be a relief, as this board shows again & again.
Best wishes Jessica, keep posting here, it does help