Dealing with loss of appetite and how reliable are the short memory test?

[Krug 22]

I have been worried about my husbands memory and personality changes for several years - he had a heamatoma 3 years ago. GP invited him in for a short memory test which was carried out by a Healthcare Assistant not nurse. Very simple questions - date counting backwards and one question was to remember a name and address - he got everything right apart from this. It now seems as if they do not want to take this any further.
However, I am still very worried. To give you an idea his weight is around 8st, loss of 3st since last summer, and he is very anaemic. We have been put in contact with a dietician who has been great but it is only phone consultations. He is on the Fortisip 2x a day but has been buying it on ebay and some days has up to 6 or 7! This is causing digestive problems as he is eating very little else. He has lupus and psoriasis/ gout/ acid reflux. Scans seem to have ruled out internal bleeding. His treatment for the psoriasis has been stopped due to the loss of kidney function but we are seeing specialist on Friday.
Could the loss of appetite be down to dementia? He has yet another UTI now as well. He is very deaf and very hard to communicate with. I try to encourage him to eat healthily but he just won't and I find the Fortisip bottles hidden behind the cushions when I get up in the morning - he sleeps downstairs. I cannot easily monitor him as he gets quite abusive when challenged and at least the drinks mean he is having something.....just do not know what to do. I guess if he has Mental Capacity there is nothing I can do to 'make' him eat? I have tried the dietician's suggestions of raisons nuts and things he can nibble on. He is 77.
It is not easy for me to see his GP alone and not sure they would talk to me anyway. I am his carer but feeling very out of my depth.
Just wondered if this loss of appetite has been experienced by others in my position and how they dealt with it?

 

[LoisJean]

I have been worried about my husbands memory and personality changes for several years - he had a heamatoma 3 years ago. GP invited him in for a short memory test which was carried out by a Healthcare Assistant not nurse. Very simple questions - date counting backwards and one question was to remember a name and address - he got everything right apart from this. It now seems as if they do not want to take this any further.
However, I am still very worried. To give you an idea his weight is around 8st, loss of 3st since last summer, and he is very anaemic. We have been put in contact with a dietician who has been great but it is only phone consultations. He is on the Fortisip 2x a day but has been buying it on ebay and some days has up to 6 or 7! This is causing digestive problems as he is eating very little else. He has lupus and psoriasis/ gout/ acid reflux. Scans seem to have ruled out internal bleeding. His treatment for the psoriasis has been stopped due to the loss of kidney function but we are seeing specialist on Friday.
Could the loss of appetite be down to dementia? He has yet another UTI now as well. He is very deaf and very hard to communicate with. I try to encourage him to eat healthily but he just won't and I find the Fortisip bottles hidden behind the cushions when I get up in the morning - he sleeps downstairs. I cannot easily monitor him as he gets quite abusive when challenged and at least the drinks mean he is having something.....just do not know what to do. I guess if he has Mental Capacity there is nothing I can do to 'make' him eat? I have tried the dietician's suggestions of raisons nuts and things he can nibble on. He is 77.
It is not easy for me to see his GP alone and not sure they would talk to me anyway. I am his carer but feeling very out of my depth.
Just wondered if this loss of appetite has been experienced by others in my position and how they dealt with it?

Hi Krug: I have dementia and can only speak for myself--plus I live in the US I'm not familiar with UK methods of diagnosis and treatment of dementia or other physical ailments. Saying that, I can't really understand our way of doing those things either. I was a clinical nurse for 45 years and I never did find any adequate way to understand. The medical community is a mystery to me.

I can speak to the appetite part a bit, tho:

If I had my way and people would just leave me alone I would eat nothing but Cheetos Cheese Puffs and Hostess Cream Filled Cupcakes all day . This is because they are satisfying a certain need for taste, consistency and energy spikes--it's not them themselves--it's what is in them that my poor battered brain tells my body it needs and they require almost no effort to open up and get in to. I crave these things.

I live alone. There is no one here to fix my meals for me. So, I have to fight my way to the freezer, fight to choose a frozen dinner, fight to put it in oven and then push my self to eat the darn thing. Once I start eating it, it is very good and I enjoy it. I have some encouragers who keep their eye on me and my freezer and who also question the number of bags of Cheetos I buy in a week. I can say that this is not 'me'. I never used to be this way..and only in the past year has it become so. Every couple of months care managers come to visit me and offer to set me up for 'Meals on Wheels'..I simply have to decline..the idea of a Government meal, made with Government food, made in a Government facility and prepared by Government workers who have little training in food handling just turns me right off. However, it may come to this for me in due time.

I don't know why dementia is this way with me. I do know that making decisions is very difficult. I do not choose what and when to eat anymore. It is easier just to graze. The idea of preparing a meal can literally put me in tears. Still, once in a while, I find myself whipping up a casserole. I just don't get it.

What I do know is that no amount of cajoling, pleading, threatening, or coercion from friends or family will change my mind about much of anything...no matter how logical or simple. My dementia does not allow for mind changing-only mind managing.

As you have said, your husband has some fairly nasty things going on within his body. I would hope his doctor would be encouraged to give him a full check up including blood work-- where I live that sometimes requires the spouse or partner to get quite assertive.

I don't know what Forisip is, maybe like our Ensure. Loaded with sugar, perhaps. Something in the ingredients are giving him what his brain tells him his body desperately needs.

I know that what I've written probably doesn't help you too much, but I want you to know that yes, dementia can play a role in appetite loss and from my point of view, can be difficult to correct if at all. I also want to let you know that people here will help you immensely. There are solutions to your problems and, as a result, to his problems, too. I want only the very best for you and your husband.

Peace and that in abundance to us all..LoisJean

 

[Otiruz]

I have been worried about my husbands memory and personality changes for several years - he had a heamatoma 3 years ago. GP invited him in for a short memory test which was carried out by a Healthcare Assistant not nurse. Very simple questions - date counting backwards and one question was to remember a name and address - he got everything right apart from this. It now seems as if they do not want to take this any further.
However, I am still very worried. To give you an idea his weight is around 8st, loss of 3st since last summer, and he is very anaemic. We have been put in contact with a dietician who has been great but it is only phone consultations. He is on the Fortisip 2x a day but has been buying it on ebay and some days has up to 6 or 7! This is causing digestive problems as he is eating very little else. He has lupus and psoriasis/ gout/ acid reflux. Scans seem to have ruled out internal bleeding. His treatment for the psoriasis has been stopped due to the loss of kidney function but we are seeing specialist on Friday.
Could the loss of appetite be down to dementia? He has yet another UTI now as well. He is very deaf and very hard to communicate with. I try to encourage him to eat healthily but he just won't and I find the Fortisip bottles hidden behind the cushions when I get up in the morning - he sleeps downstairs. I cannot easily monitor him as he gets quite abusive when challenged and at least the drinks mean he is having something.....just do not know what to do. I guess if he has Mental Capacity there is nothing I can do to 'make' him eat? I have tried the dietician's suggestions of raisons nuts and things he can nibble on. He is 77.
It is not easy for me to see his GP alone and not sure they would talk to me anyway. I am his carer but feeling very out of my depth.
Just wondered if this loss of appetite has been experienced by others in my position and how they dealt with it?

Hello Krug 22 - you seem to be dealing with so many health problems on behalf of your poor husband. I am not qualified to answer any of your questions other than to say my mother has been diagnosed today with a UTI (second test) and has not eaten properly for at least a week. Drinking is a problem too and these are all associated with Mum's dementia - which I'm told does not allow the sufferer to 'know' they are thirsty or hungry. As regards your hubby's previous test 3 years ago, I feel he is now well overdue for another one, and this time by his GP, not a nurse. Be insistent, you cannot be expected to care for someone with very complex needs without an up to date diagnosis followed by some assistance if it proves he does not have mental capacity. Mention how vulnerable he is and that he is not capable of making a decision to see the GP. You are doing a brilliant job with one hand tied behind your back - I hope you are able to push for another test and some much needed help with hubby's needs.

 

[canary]

The Mini Mental State Examination is not always reliable and doesnt always convey the level of dementia. Some people do very badly with it, despite functioning pretty well and other people score well despite being very affected. Some forms of dementia (notably Fronto-Temporal Dementia) do not have problems with short-term memory and can easily pass this test.

Food fixations and cravings can be a feature of dementia (as LoisJean described so well), so its possible that this is what is happening. Are there any other problems with his behaviour? Loss of skills, apathy, aggression, getting confused, reporting things as fact that arnt (confabulations), inappropriate comments? I do think that further tests are in order, so I would keep a diary of his behaviour and then go and see your GP again about your concerns.

 

[Krug 22]

Thanks LoisJean, Canary and Otiruz. Yes his short term memory is very bad but in fairness he is very deaf.He used to enjoy cooking but has burnt every pan in the house and gets annoyed if I try to check or help - we always eat on our own as I am a vegitarian. But with the aneamia and the psoriasis gout flare up and the UTI's very hard to know if it is physical or mental or a combination of both which is what I suspect. Also there is a huge age difference and I think he is struggling to no longer be the 'alpha male' - he has always been very controlling in our 25 years of marriage almost to the point of being an intellectual bully!
The lack of appetite worries me as he now says he has gone off the Fortisips - and that is literally the only thing he was eating. We went out for lunch for his birthday but he had very little of his starter and we brought the main course home - cats fed on pan fried monkfist - I took him because I thought it might stimulate this appetite! I just do not know what else to try!
I will just keep a diary and see if his GP will see me if things go downhill...We are seeing the Dermatologist on Friday, Monday he has a scan, and the week after he has an injection for his Psoriasis at the hospital followed by an appointment with the Nephrologist the next day and today we have just come back from an ECG! NO way could he remember these appointments on his own - I have to constantly stay on top of the blood tests as the drugs that work on the psoriasis can be very hard on the kidneys as I have found out. I also have to constantly remind him to take his tablets and put them out for him. He really cannot cope with the day to day tasks.
Thanks for listening - very hard right now to know how to handle him and most importantly get him to eat!

 

[Princess t]

Hi

Hi Krug: I have dementia and can only speak for myself--plus I live in the US I'm not familiar with UK methods of diagnosis and treatment of dementia or other physical ailments. Saying that, I can't really understand our way of doing those things either. I was a clinical nurse for 45 years and I never did find any adequate way to understand. The medical community is a mystery to me.

I can speak to the appetite part a bit, tho:

If I had my way and people would just leave me alone I would eat nothing but Cheetos Cheese Puffs and Hostess Cream Filled Cupcakes all day . This is because they are satisfying a certain need for taste, consistency and energy spikes--it's not them themselves--it's what is in them that my poor battered brain tells my body it needs and they require almost no effort to open up and get in to. I crave these things.

I live alone. There is no one here to fix my meals for me. So, I have to fight my way to the freezer, fight to choose a frozen dinner, fight to put it in oven and then push my self to eat the darn thing. Once I start eating it, it is very good and I enjoy it. I have some encouragers who keep their eye on me and my freezer and who also question the number of bags of Cheetos I buy in a week. I can say that this is not 'me'. I never used to be this way..and only in the past year has it become so. Every couple of months care managers come to visit me and offer to set me up for 'Meals on Wheels'..I simply have to decline..the idea of a Government meal, made with Government food, made in a Government facility and prepared by Government workers who have little training in food handling just turns me right off. However, it may come to this for me in due time.

I don't know why dementia is this way with me. I do know that making decisions is very difficult. I do not choose what and when to eat anymore. It is easier just to graze. The idea of preparing a meal can literally put me in tears. Still, once in a while, I find myself whipping up a casserole. I just don't get it.

What I do know is that no amount of cajoling, pleading, threatening, or coercion from friends or family will change my mind about much of anything...no matter how logical or simple. My dementia does not allow for mind changing-only mind managing.

As you have said, your husband has some fairly nasty things going on within his body. I would hope his doctor would be encouraged to give him a full check up including blood work-- where I live that sometimes requires the spouse or partner to get quite assertive.

I don't know what Forisip is, maybe like our Ensure. Loaded with sugar, perhaps. Something in the ingredients are giving him what his brain tells him his body desperately needs.

I know that what I've written probably doesn't help you too much, but I want you to know that yes, dementia can play a role in appetite loss and from my point of view, can be difficult to correct if at all. I also want to let you know that people here will help you immensely. There are solutions to your problems and, as a result, to his problems, too. I want only the very best for you and your husband.

Peace and that in abundance to us all..LoisJean

I have just read your post loisjean, and you have answered so many questions for me. I help look after my mom, she's 92, suffers with dementia and altzimers, she won't cook hates proper meals but will live on cheese crisps, blocks of cheese ready meals but only one particular brand. She thinks they are wonderful, don't think she's eat fruit or veg for months. Guess her body craves these things.

 

[JohnBG]

test

Although my own mother passed those quick question plus on the basis eligible to drive I knew better, she failed her memory test as expected. This was only one facet is measuring her capacity all those other aspects plus the diary equally valid.

John