Think mum is now close to the end, or am I just thinking the worst?

[Jane23]

Mum is 64 and has advanced vascular dementia.
She has now stopped eating and taking her tablets for about 5 weeks now and apart from a teaspoon full of food maybe every 3-4 days.
She was still drinking but now this is also stopping, she has gone from drinking tea to full fat milk and barley water but has now gone off these and now she drinks a glass or two of coke a day, but then brings up thick phlem its as if her body can not hold it in.
She has lost wight and gone down from a size 18 to size 12.
Speach has virtually gone apart from the odd words, sleeps lot but not for long periods and when she is awake constantly talks but not so you can understand.
Know she is incontinent with urine, does not go often but this will be due to how little input she is having, think she may be double incontinent how ever father has not shared this just said she has had an accident once.
She still smiles when I first walk in the room or at my father when she wakes from a nap but a lot of the time she just has a vacant look on her face.
She can go days with out my father or me changing her clothes and gets very aggitated if we try to persue.
Also she has not let us wash her hair now for 4 weeks, have said to my father we will keep trying but will not force her.
Sorry about the long post but I am sure this is the final stage that my mums body is just giving up, can anyone tell me if I'm right or am I just thinking too dark?

 

[jenniferpa]

Oh Jane I am sorry you and your family are going through this, and your mother so young...

I do want to ask: has she been checked for infections? Specifically UTIs. Because they can produce a massive downturn.

Does she have other health issues? You mention medication.

I think the clothes changing thing doesn't prove much TBH: I'm not sure I wouldn't be resistant to having my clothes changed if I wasn't sure who was doing the changing (and it sounds as if this might be an issue). The hair washing: a lot of people with dementia become fearful of water - there are products and caps with products in them that you can buy that allow you to cleanse the hair without the whole water thing.

But the big question is: what does her doctor say? Because while this could be the beginning of the end (and I suppose will be if she stops eating) but equally it could be down to an entirely different medical issue. The problem of course being that if a person doesn't eat for an extended period of time, the body stops being hungry: its a viscous circle.

 

[Jane23]

Oh Jane I am sorry you and your family are going through this, and your mother so young...

I do want to ask: has she been checked for infections? Specifically UTIs. Because they can produce a massive downturn.

Does she have other health issues? You mention medication.

I think the clothes changing thing doesn't prove much TBH: I'm not sure I wouldn't be resistant to having my clothes changed if I wasn't sure who was doing the changing (and it sounds as if this might be an issue). The hair washing: a lot of people with dementia become fearful of water - there are products and caps with products in them that you can buy that allow you to cleanse the hair without the whole water thing.

But the big question is: what does her doctor say? Because while this could be the beginning of the end (and I suppose will be if she stops eating) but equally it could be down to an entirely different medical issue. The problem of course being that if a person doesn't eat for an extended period of time, the body stops being hungry: its a viscous circle.

Hi Jennifer, thanks for replying.
Yes my mum is on a lot of medication, some for high blood pressure, angina and the rest she has been on for nearly two years now since she was sectioned for the ad vascular dementia this was the time when it had really got so bad.
Her illness just accelerated so quick and with such a bang.
All the medical team where great and I she settled down with the meds no more psychotic thoughts or illusions and she has been happy being cared for at home, the medical team did recommend she go into permanent EMI nursing but my father did not want this, I had my reservations regarding this but he has coped remarkably and i have been going down weekly (work f/time and live an hour away) but I have just adjusted working hours so I now go down twice per week.
Doctor was out about four weeks ago and did full tests blood the lot which came back clear and she has referred her to have an ultrasound which should have been two weeks ago, but did not happen due to her totally refusing to go anywhere, this has now been rearranged but i cannot see it happening.
Have got the head nurse coming out on Tuesday, spoke with her on Friday after having told no doctors where available and she is coming to do a review of mum and said there are different things we can try like liquid meds.
Think dad is in total denial about what is going on and i keep having to push him to get more help (he refuses to have any help in saying it would be the last thing mum wanted and he could not trust anyone else) I know he loves her the world but think he feels he would loose her if he let anyone else in.
I guess I'm just feeling a bit empty and trapped with all these emotions.

 

[Jane23]

Off to see mum

Just off to see my lovely mum now with my eldest daughter and i am taking a range of different pureed foods with me just to see if I can get anything passed her lips, keep your fingers crossed for me and will update later.

 

[Dazmum]

If she will drink Jane you could try Fortisips or something similar? Also, there are some very good dry shampoos these days. I know this isn't much help overall, but hope that the review will provide some suggestions x

 

[Mrsbusy]

If your Dad is like mine he is savouring every minute with his most treasured person in the world, who he thinks can't be entrusted to anyone but him. He's holding it all together for as long as he can because those weddings vows told him that's what he promised and so that's what he will do.

It's a very sad situation for all of you, going through something similar but mums not quite so bad at the moment, in some ways. I hate this blasted disease.

 

[Jane23]

If she will drink Jane you could try Fortisips or something similar? Also, there are some very good dry shampoos these days. I know this isn't much help overall, but hope that the review will provide some suggestions x

Hi Dazmum thanks for your reply, just got back from mums and i picked some ensure plus drinks up from the chemist she drank just under half of it but then has refused anymore also picked up some straws and she has also drank two glasses of coke, though each time she is drinking within a minute or two she is burping and gagging and then bringing up a load of phlem.
Not tried the dry shampoo yet but will do however she gets very aggitated if we try to change her or do any personal care but I had one thing that I felt good with and that was that she let me brush her teeth briefly, brought her a new soft bristle brush
Tried her with some of the pureed foods but she was having none of it and could not even get it near her mouth.
Asked dad to keep trying with the ensure drinks and also picked some complan drinks up to and if she starts taking these will get more in.

 

[Jane23]

If your Dad is like mine he is savouring every minute with his most treasured person in the world, who he thinks can't be entrusted to anyone but him. He's holding it all together for as long as he can because those weddings vows told him that's what he promised and so that's what he will do.

It's a very sad situation for all of you, going through something similar but mums not quite so bad at the moment, in some ways. I hate this blasted disease.

I echo what you say Mrsbusy, it is a horrid disease and you would not wish it on anyone.
Dad will be lost with out mum and he will hold on till the end though I do worry about the toll its taken on him too.
Good news is dad had quite a few hours sleep whilst I was there today and my daughter sat with my mum whilst i just nipped to the chemist and sorted out the laundry.

 

[Chaucer 1931]

I'm so sorry to read of your worrying about your mum Jane,it is very hard when your loved one reaches the eating very little stage. I read your mum liked the Coke drink you took her?-well that may be a little guider in finding something she would like,as some really sweet foods and drinks helped my mum,she seemed to develop a preference for them in the later last few months of her illness..
Perhaps little trifles you can buy in multi packs of 3 might help-the cream,custard and plain fruit jelly-not the bits of hard fruit,-they might help-chocolate mousse?,puréed egg custards,even good old fashioned angel delight or carnation milk and sponge puréed up..
If she can manage little bits like that and when you have a little spare time could you make some up and take it?,then they could keep it in fridge/freeze some in the home for her,so you can give her some when you visit.. Sorry for long post,my mum had vascular dementia and some things to eat like that, did help her last few months.. Sending you some strength,it is hard and so worrying for you to see,I know. Xx

 

[Jane23]

I'm so sorry to read of your worrying about your mum Jane,it is very hard when your loved one reaches the eating very little stage. I read your mum liked the Coke drink you took her?-well that may be a little guider in finding something she would like,as some really sweet foods and drinks helped my mum,she seemed to develop a preference for them in the later last few months of her illness..
Perhaps little trifles you can buy in multi packs of 3 might help-the cream,custard and plain fruit jelly-not the bits of hard fruit,-they might help-chocolate mousse?,puréed egg custards,even good old fashioned angel delight or carnation milk and sponge puréed up..
If she can manage little bits like that and when you have a little spare time could you make some up and take it?,then they could keep it in fridge/freeze some in the home for her,so you can give her some when you visit.. Sorry for long post,my mum had vascular dementia and some things to eat like that, did help her last few months.. Sending you some strength,it is hard and so worrying for you to see,I know. Xx

Thank you for your kind words all the foods you mentioned are what she has been living off mainly for the last six months or more but now very little has passed her mouth for the last five weeks and it was four days ago since she last had a teaspoon of food I have tried savory and sweet and new tastes and old but nothing seems to work.
Will just have to see what the nurses come up with on Tuesday.
Anyway thanks for taking time to share and care when you are going through the worst time, sending my love and please take care of yourself xx

 

[CeliaThePoet]

Why is she bringing up phlegm? Does she have an infection?

 

[nita]

When you say phlegm, do you mean mucus from the stomach? It sounds like what my Mum had some years ago. She couldn't keep any food down. She had a gastroscopy (camera down the throat - would be difficult for your Mum but they can give a sedative) and she had a stricture in her oesophagus and a hiatus hernia. She now takes lansoprazole daily and it has solved the problem. Mum's problems seemed to be initiated by long term use of tramadol. Is that what the ultrasound you mentioned is for? Could the doctor not just give her medication - Mum's tablets are sucked.

 

[Jane23]

Hi Cilia the poet and Nita, I think it is phlegm mum is bringing up, do you know when you have been sick so much and nothing but bile comes out, it is really thick spit like but so yes it could be mucus will find out more when medical team comes out tomorrow.
The u/sound was book by the doctor after all mums bloods came back clear, think it may have been cause my dad was insisting she has a scan he is saying it must be something else why she has stopped eating and is just not even considering it is anything to do with ad.
Sometimes its hard to communicate with dad as I think he puts a lot of mums ad symptoms down to other things and he does not like to admit she is getting worse but I know this is just his way of coping with things and we all have our own ways of dealing with things don't we.
I am looking forward to mum having a medical review tomorrow but at the same time a bit apprehensive of what they are going to say :-(

 

[nita]

Jane, the mucus from the stomach does look like phlegm but it is (how can I describe it?) long strings of gloopy sort of liquid. If she is bringing this up each time she eats, it is no wonder she doesn't want to eat. I think it sounds like a stomach problem. Has it been explained properly to the doctor - i.e. it happens every time she eats or drinks?

each time she is drinking within a minute or two she is burping and gagging and then bringing up a load of phlem.

 

[Jane23]

Jane, the mucus from the stomach does look like phlegm but it is (how can I describe it?) long strings of gloopy sort of liquid. If she is bringing this up each time she eats, it is no wonder she doesn't want to eat. I think it sounds like a stomach problem. Has it been explained properly to the doctor - i.e. it happens every time she eats or drinks?

Hi Nita, that does sound more like what mum is bringing up and though dad has said he has told the doctor this I am just glad I am there tomorrow to make sure they know.
Dad has said you do not see her everyday and she does not do this everyday but each day I am there she does, I know I'm only there twice weekly but this has been going on now for a few weeks and she is only taking in liquids now.
Thanks for replying and I will update tomorrow x

 

[Amy in the US]

Jane, I hope the medical review tomorrow (later today, really) goes as well as possible and that you get some information. When you get a chance, please let us know what happens. Will be thinking of you.

 

[rvasudeva]

not sure if it's the end of life or she will get better

My mum has alzheimer's, she has gone through pattern of a day eating and drinking and then she stops completely for a couple of days. She has had loads of UTI and constipation. She has been in and out of hospitals no one is telling us if she is dying or just going through a phase. Her urine is the colour of dark tea. It's so frustrating

 

[mollypearce888]

Uti?

first of all I am very sorry to hear about your mum

I have been going through similar things with my grandmother recently. One thing you may want to do is get your local GP to do tests on your mum for urinary trapped infections. If your mum did in fact have a UTI it can make the disease look far more prominent then it actually is. I have experienced this, my grandmother went from walking to not being able to keep her head up in the space of a week this frightened my family until we took her to the local GP. he will prescribe her some medication and hopefully things will begin to improve, I'm not saying the disease will go away as we all no but hope this helps!