frustrated

[sag]

hi, not been on here for a long time.
finally managed to get a diagnosis for my mum early stages to moderate so they wont give her medication yet.
myself and my brother look after her. we dont always see eye to eye about the way to do things but we wont to keep her in her own home for as long as we can.
mum seems to have forgotten how to clean anything so i do all the cleaning. i struggle sometimes to work and drive the 75miles to mums house to get things done and support her.
she hates going to the hospital as she dosnt understand why i keep taking her there as there is nothing wrong.
i sometimes want to lose my temper with her but tell myself its the illness not my mum being awkward.
she forgot my birthday this year that was definatly my lowest point.
sorry for being miserable having a bad day.

 

[Canadian Joanne]

finally managed to get a diagnosis for my mum early stages to moderate so they wont give her medication yet.

I don't understand this - there is specifically medication for the early/moderate stages. Please ask why they will not prescribe something for you mother. You deserve an explanation, at least. Perhaps she has an existing condition that meds would conflict with, but really they should have explained that to you. To you or your brother, not your mother.

 

[jenniferpa]

Unfortunately Joanne, NICE guidelines in the UK mean that people with early stage AD are not prescribed meds for it because it is not considered cost effective. The only way top get them is to pay for them (if you can find a doctor willing to prescribe privately).

 

[Canadian Joanne]

Unfortunately Joanne, NICE guidelines in the UK mean that people with early stage AD are not prescribed meds for it because it is not considered cost effective. The only way top get them is to pay for them (if you can find a doctor willing to prescribe privately).

You have got to be joking! We have always had to pay for Mum's Aricept, Reminyl and Exbixa, but at least we were given the choice of using the meds or not. We didn't have to run around looking for a doctor to prescrib them. We've chosen the meds and have been very lucky in that Mum's pension has an excellent insurance package & covers 80% of her meds. Even if we didn't have the insurance, we would have taken the meds. They have helped us a lot.

In sag's case, I feel she should have been given the option. We have so few things that we can control with this disease, at least we should be able to decide something.

 

[Sam Iam]

Sag,
sadly this is the course of AD,why dont you and your brother remind your Mum of birthdays That is what I do and have promised Mum even if she does not know us everyone will get a card and a birthday "penny". My Daughter reminds Mum of my b/day.
You are entitled to have bad days, having to keep calm when all you want to do is scream is hard and so is travelling 75 miles before you can even start caring for your Mum. TP is great you can post on here when you feel like screaming and there is always some one here for you' XXX

 

[sag]

thanks

thanks for listening , it really does help to unload.
interesting to hear how services wok in other counteries though.
perhaps things will chanfge here with the new dementia stratagy. wont hold my breath though.