Coeliacs and Alzheimers

[PamelaDH]

My mum (85) has both and has, for many years, refused to stick to the diet. She now weighs under 6stone (5ft in height), is incredibly thin and frail and belches constantly. Recently she has complained of a metallic taste in her mouth. I am pretty sure it is due to the state of her stomach. The trouble is that she does exaggerate things and often lies for attention. The doctors are getting to the stage where they are losing patience with her as she complains about feeling ill all the time but refuses to follow up treatment or have necessary tests done.. I have a lot of genetic conditions (from my dad's side) and keep being told that I need to rest and take care of myself but she won't have anyone else in her apartment. Just worried about the progression of the Coeliacs and she either refuses or hates everything I make for her. The Alzheimers is progressing but she still remembers me so am more concerned at the fact she is malnourished. Does anyone else have to cope with this and how do you do it? I feel so powerless and useless.

[MAS_Nurse]

Hello Pamela

You have a thankless task on your hands. Please take care of yourself. Mum has made it to 85 breaking the rules. I wonder if the metallic taste is from a medication Mum takes? Have you tried CoeliacUK for advice/support?

Best wishes

[Hidden]

Hi PamelaDH,

This must be really frustrating for you, and it sounds as if you are becoming a bit overwhelmed with the task of caring at the moment.

Can I just offer a crumb of comfort with regard to your mum's diet. I am elderly and, as I've aged I am less and less interested in the joys of food and there are so many things now that I just can't and won't eat. However, despite my many ailments I somehow manage to thrive, so try not to worry about your mum's diet too much. If you don't make that a stress in your life, it will lift a little bit of your burden of caring. Your mum is 85 and that's a grand old age in its own right. Just let her find her own level of eating for what remains of her life. I don't think it will make an awful lot of difference to her coeliac disease at this stage. If you can, ask her what she'd like to eat, and just let her have that. If you can quietly switch ingredients to make it more coeliac friendly, fine, but if not, don't worry about it.

[Cann]

I think the advice here is very good for you. We are all responsible for ourselves; I have learnt that from trying to help my husband and in the end they have to want to do it for it to work. I cannot eat any grains, but eat a little protein little and often of both high and plant. I have to keep hydrated, too, so eat fruit and veg. Does your Mum like any of that - any fruit, herbal drinks, or protein - if she just eats that she will be ok. The appetite gets less as we age, but we still need nutrients and with A's, too. You need to look after yourself, too, as caring for others is stressful and often not rewarding as I found with caring for my parents before they died. The A's may be causing the 'lies' - keeping hydrated can help to clear the mind, but I am sure she doesn't feel well most of the time. Remember she does need to help herself, too, along with your help and you must not put her above your own health and survival, i.e. you must take time out to look after yourself or you will get ill and then who will help you. I am talking from experience.

[Cann]

P.S. I used to get a metallic taste in my mouth all the time - does she have amalgam fillings or else it is probably the drugs.

[Midori]

You Must take care of yourself or you will not be able to care for your Mum. Please tell her that if she won't allow others in to help her and you become ill, she will be left unattended. It might make her think about what she is doing to herself and you.