Alzheimer's and anorexia

[DowntonTrout]

Today I found out something.

I have talked on here a lot about my DM not eating but to recap it started after she fractured her hip. It has been 4 months now and she has lost over 20kg, almost 1/3 of her body weight. She had been surviving on the Calgen high calorie supplements.

Anyway, over the last week, there seemed to be a small breakthrough. One day she ate a bowl of porridge. Two days later a bowl of soup and on Wednesday 3 triangles of sandwich, but weds/Thursday she then had vomiting and diarrhoea. The GP feels her stomach has shrunk so much that her body could not tolerate the food. The term anorexia was mentioned.

This has been a revelation to me. For whatever reason, most certainly physchological, (control/fear/cognitive etc) mum has developed elderly anorexia. I can now understand better what is happening. This may not seem much, mum is still starving to death and we are back to square one in that she covers her mouth and will not be coerced into putting anything in her mouth, but putting a name to her condition helps, somehow.

I just wanted to share that this is a recognised term. It does not give any answers or change the situation and of course it makes no difference to mum, whatever they call it. But having that label, being able to explain it, well that helps me.

Poor you, though I hope having a label attached helps you find ways of encouraging her to eat.

Probably not relevant, but DD was a "failing to thrive" baby who only put on 2 lbs in her first year. Bowel problems led to "infant anorexia". She worked out that eating caused bowel pain so stopped eating. She then became very anxious about the apparatus of feeding: bibs, high chairs, spoons, etc. We found ourselves on a race against time as without getting food into her she would need to be tube fed, and this would make the psychological problem worse.

I have no idea whether any advice we got for a baby would apply to an adult, though assume that giving thought to why someone has developed a phobia about eating and how to work found can't help. For my daughter the following worked:

1. It does not matter what you eat, just that you eat.
2. Note what makes her anxious, eg bibs and anything connected with feeding.
3. Take advantage of what she does have, to allow her to be in control. DD had a mouthing reflex, so would put things into her mouth only to spit them out. So we scattered cheesy watsits and chocolate fingers on the floor to let her put them into her mouth. (I was never that fussed about hygiene - just as well.) These are impossible to spit out fully so she had to get used to food in her mouth.
4. Food every two hours, as this apparently is the way to maximise weight gain.

Interestingly hospital support came in the form of a speech therapist as they know about mouths and muscles. Tube fed babies have to learn how to swallow. Also inevitably NHS support was mixed with little crossover from the medical, especially surgical side, and nursing and community support. Some professionals went the extra mile and others, including the man running the community feeding clinic who accused me of being over-anxious, till it turned out he had not read her notes and had not realised there was an underlying medical problem, were pretty awful.

Just a question, but is it possible that there could be a physical cause, eg some form of stenosis or narrowing in the throat, or some sort of bowel/stomach problem, which is causing the instinctive reluctance to eat?

Good luck. In case anyone asks, DD is now a very sporty 15 year old with no traces of her previous illness, other than a lack of enamel on some teeth as a result of the early malnutrition. She did though react badly when, aged 4, she was given a packet of cheesy watsits.

That's very interesting. Thank you. I am glad your DD managed to pull through. What i find parTicularly interesting is that it was a learned reaction which is almost certainly the case with mum. We have not really investigated an underlying medical cause, the health pros do not believe there to be any. Everyone is reluctant to do any invasive investigation or treatment as at this stage in mums illness it is pretty pointless. They are even not bothering with bloods as the benefit of anything they may learn is outweighed by the distress It causes.

I suppose the difference is that your DD needed to learn to eat to thrive and grow healthy, whereas, for mum, moving towards end of life, it will not change the outcome and is only going to prolong the inevitable.they continue to offer and encourage because they do not want to fail in the duty of care, but the failure will not really be theirs. I think mum was failed, initially in hospital and then by her previous care home, when the food refusal became embedded. Reversing that could take months, as with any eating disorder and possibly it is a losing battle anyway, and mum does not have that time. Her deterioration has been so fast and her body is so ravaged, the damage has been done.

I should say the nursing home is remaining positive, they will not give up and believe that mum can still have some quality of life. My DSIS and I think that this is because there are many there who are in worse condition than mum, who are lying in bed, maybe for years, unable to do anything for themselves, just about surviving, so they compare mum to them and as she can walk and talk they see this as "quality". We only compare mum to mum and see her existence as miserable. That sounds so negative, I know, but we cannot see there being any significant improvement whether she eats or not.

There seem to be a lot of parallels between old age and infancy: more inward looking and self-centred, less empathy or fewer social constraints. Learning goes into reverse.

I know people with Alzheimers will start forgetting how to walk. Given babies can forget their inborn swallowing skills if tube fed long enough, is it possible something happened which started this off, and now your mother has lost confidence in actually swallowing, or that her automatic skills have somehow been undermined.

There again my grandfather who was in his 90s and housebound, felt he had lived long enough and effectively stopped eating. There might have been a physical reason but the family took comfort from believing it was his decision and a way of regaining control.

I agree though that, whatever the cause, there is probably not much that can be done other than what the home is doing. Awful for you and your sister.

There is another reason for not eating. I had this with Mum when she lived with me. She thought if she didn't eat or drink she would not need the loo. No amount of persuasion would work. She became very ill and all her problems multiplied. Again each time she has been in hospital she refused to eat. Now she will eat a very tiny amount but will go for days without eating. The NH cannot force her and we have said no to intervention. It is dreadful to see her getting thinner, but when she does eat she cannot remember having done so. How long your Mum and mine can on for Downton is unbelievable. I expected my Mum to have passed away a few months ago when she went to the NH but she is still here.

I know pudcat it is unbelievable. 3 1/2 months now with barely any food. 450ml/600ml a day of fluids. I understand that she doesn't need as much food and that she doesn't feel hungry anymore. But how long can they really go on like this for?

Also, I meant to add that yes, going to the loo is one of the factors that started this in the first place. After the fractured hip she started saying "no more, I will want to wee-wee."

It is just one of a long list of events that caused her to stop eating.