Mum won't eat

ChristinaG

Registered User
Feb 21, 2017
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0
Can anyone offer any advice please. Mum is now in a nursing home after 7 weeks in hospital and considerable deterioration. She is doubly incontinent, has to be hoisted onto a wheelchair to be taken downstairs and spends quite a lot of time calling for help. I doubt that she knows who I am although i visit every day and her communication is poor. The main problem is that she isn't eating much at all. She tends to refuse to open her mouth or spits out food which is either soft or puried as she won't allow her teeth to be put in. She drinks very well from a beaker and seems to be very thirsty. She is still quite heavy and im told that special drinks can be given but from a medical point of view only when her BMI drops to an unacceptable level. I don't know what to do about her not eating. The hospital didn't think there was anything wrong with her swallowing and she seems to drink okay although she sometimes coughs a lot.
 

Amethyst59

Registered User
Jul 3, 2017
5,776
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Kent
I’m sorry I don’t have direct experience of this...but I have read on the forum about a SALT team...they check the swallowing mechanism. If that is working, then I guess that your mum is getting the sustenance she needs at the moment from fluids, and that the liquid diet supplements will be used when needed.
Just a thought, have you tried food at different temperatures, or different textures? I mean like sorbet or ice cream.
 

Jessbow

Registered User
Mar 1, 2013
5,678
0
Midlands
Is she capable of getting finger food to her mouth? just leave food beside her and let her pick.

Nothing wrong with milkshake /smoothies if she's drink
 

ChristinaG

Registered User
Feb 21, 2017
92
0
Thank you for these replies. I should have said that mum can't feed or take fluids herself. I could try putting something in her hand. I will ask the Home to try different textures and heat levels. She was eating jelly and a banana or two in very small pieces over an hour or so but even her taste for these has gone. I will ask the Home to try milk shake smoothies. I fear this is all part of tge deterioration.
 

love.dad.but..

Registered User
Jan 16, 2014
4,962
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Kent
Dad always loved his food in the early into moderate stages. However as he declined into advanced stage the what and why gradually disappeared into lack of interest and understanding despite the NH trying lots of different foods etc. It is good though that she is maintaining an interest in fluids and perhaps variations of and those with supplements may help.
 

Hazara8

Registered User
Apr 6, 2015
697
0
Can anyone offer any advice please. Mum is now in a nursing home after 7 weeks in hospital and considerable deterioration. She is doubly incontinent, has to be hoisted onto a wheelchair to be taken downstairs and spends quite a lot of time calling for help. I doubt that she knows who I am although i visit every day and her communication is poor. The main problem is that she isn't eating much at all. She tends to refuse to open her mouth or spits out food which is either soft or puried as she won't allow her teeth to be put in. She drinks very well from a beaker and seems to be very thirsty. She is still quite heavy and im told that special drinks can be given but from a medical point of view only when her BMI drops to an unacceptable level. I don't know what to do about her not eating. The hospital didn't think there was anything wrong with her swallowing and she seems to drink okay although she sometimes coughs a lot.
Hospital and dementia, alas, are rarely good companions and the disruption can result in this sort of thing. Dementia alone, at a certain stage, affects the eating process and as you say, the hospital have ruled out any swallowing problem, that suggests something else. I witness this (refusal to eat etc) quite often and it is basically due to cognitive decline - dependent on the stage at which, say Alzheimer's, has reached. Also, medications, undetected pain, depression and varied reasons, all of which are assessed whenever possible, in order to eliminate those factors and enable nutrition to continue. The nursing home will have a regime for meal times and no doubt offer 'finger foods' and 'build ups' when appropriate. This aspect of Care is highly important, albeit not always easy to achieve for the reasons cited here. Your mother is drinking well (good) and if still quite 'heavy' that is pleasing. This whole question of 'refusal to eat' can be distressing. Advice, if any, can only stem from personal experience and one must always remember that each case is different. My own mother refused meal times at one stage and lost weight alarmingly. Then, one morning she ate a hearty breakfast and things returned to 'normal. Was that depression, pain, medication, the look of the food, the time she ate, the 'noise' around her ... the list goes on. See how things are over the next few days and then request an assessment, which no doubt will be the case anyway by way of the nursing home's care plan and practice. Dementia is progressive and does not always tick all the boxes as and when we expect. I do hope that things change in a positive manner and thus reduces any anxieties on your part.
 

ChristinaG

Registered User
Feb 21, 2017
92
0
Many thanks for your reply Hazara8. Mum doesn't have a care plan yet so i need to follow this up. I am going in today to try and help her eat Sunday lunch. I worry so much and have spent so much time with mum over the last 8 years she has been diagnosed that i have become tired and jaded which I know won't help her. I spent 2-3 hours feeding her little bits in hospital, now when she spits out the food a couple of times I tend to give up. I was hoping the Home would have more success as they must have seen this sort of thing before. She also keeps her eyes closed for a lot of the time so she can't see the food. I talk to her the whole time saying how nice the food is. I'm not sure she sees much even with her eyes open (nothing wrong with her vision as far as I am aware). I will keep trying but mum and I are both exhausted from fighting this terrible disease.
 

love.dad.but..

Registered User
Jan 16, 2014
4,962
0
Kent
Many thanks for your reply Hazara8. Mum doesn't have a care plan yet so i need to follow this up. I am going in today to try and help her eat Sunday lunch. I worry so much and have spent so much time with mum over the last 8 years she has been diagnosed that i have become tired and jaded which I know won't help her. I spent 2-3 hours feeding her little bits in hospital, now when she spits out the food a couple of times I tend to give up. I was hoping the Home would have more success as they must have seen this sort of thing before. She also keeps her eyes closed for a lot of the time so she can't see the food. I talk to her the whole time saying how nice the food is. I'm not sure she sees much even with her eyes open (nothing wrong with her vision as far as I am aware). I will keep trying but mum and I are both exhausted from fighting this terrible disease.
When dad's eating interest declined I timed my visits with lunch to help him...the staff helped all those who needed it but we're overstretched and unlike me who could try and cajole dad into coming and sitting back down every few minutes to hopefully get another mouthful in..it gradually got very difficult however thete was a sweet tooth period
When often dad didn't touch or refused his dinner but was given 2 or 3 puddings instead so whilst not nutritious at least meant he was eating something...perhaps worth a try. My attitude became that so long as he is eating something now and again the advanced dementia was gathering pace so whilst not ideal not to get too upset about lack of vitamins etc...although I did discuss with GP and she agreed to give him calcium tabs for his bones as he was by then hight risk of falls and anything to try to keep bones in better health.Taste and texture and effort impacted massively with dad so it was just a matter of trying different things and his NH were good at this. Dad quite often ate his cooked breakfast as he was up and about at night so perhaps built up his appetite so if someone isn't mobile or loses mobility they don't perhaps maintain that hungry need of food....it was all about seizing the opportunity with dad giving him two breakfasts and not worrying if he refused lunch...he hardly ever sat down for supper during sundowning during this period....and if he sat down during the day staff would try again giving milkshakes...giving him something during the night when he was up. Walking alongside side him giving him something to eat...I took in bits and bobs to try after his lunch refusals....and often took something myself to eat with him to demonstrate and remind him...although often without success as he declined further so I was realistic in knowing the illness would win over food as with many other things..He seemed in the last 18 months of his life to always be on a food intake chart so it was well monitored.It is frustrating and sad to experience as you just want to say...please just eat something...but of course similar to losing awareness of everything else for some pwd they cannot be persuaded and we feel helpless. I hope this week with your help at lunch goes better.
 
Last edited:

Witzend

Registered User
Aug 29, 2007
4,283
0
SW London
Sometimes people just don't feel like eating. And I may be in a minority of one here, but having seen people in my mother's care home being endlessly badgered, coaxed and pestered to eat - albeit with the best of intentions - when they so very clearly didn't want to, I made up my mind that I was not going to allow it with my mother, already so elderly and with well advanced dementia.
It seems to me that so often it's the only choice left to them.
 

Beate

Registered User
May 21, 2014
12,179
0
London
I kind of agree. I get that people who don't eat will die. But maybe they want to. John's appetite was always very good, apart from the last few days in the nursing home. There was a woman on the same ward as him for months and she was a nice lady, but whenever someone tried to get her to eat, she went really shrill and screamed "I don't want it! Don't make me!" It must have been terrible for all involved to see this skeletal woman fight against food, but I don't really see a solution.
 

love.dad.but..

Registered User
Jan 16, 2014
4,962
0
Kent
Sometimes people just don't feel like eating. And I may be in a minority of one here, but having seen people in my mother's care home being endlessly badgered, coaxed and pestered to eat - albeit with the best of intentions - when they so very clearly didn't want to, I made up my mind that I was not going to allow it with my mother, already so elderly and with well advanced dementia.
It seems to me that so often it's the only choice left to them.
Yes I also agree...in the earlier stages of dad not showing interest cajoling could make a difference because he needed reminding and couldn't ask for food or fluids... but as he declined so did his determination to do without...wasn't a conscious thing just part of the illness I felt in his brain not recognising the need for food...and I felt what would be would be and whilst the nurses had a duty to always try I let it be known by that stage that if he ate.. good ...but if he didn't so long as he was given regular opportunity that was also fine by me. He always took fluids well except for at end of life. As with just about everything with this horrible illness it is always tricky trying to get the balance right
 

Bunpoots

Volunteer Host
Apr 1, 2016
7,342
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Nottinghamshire
I also agree. While I totally understand the instinct to feed someone I do think that if someone, with or without dementia, decides they don't want to eat it's probably their way of saying they've had enough. There does come a point when encouraging becomes forcing and I wouldn't want that for my dad.

Having said that I think it's fine to encourage nutritious drinks if they are accepted and hopefully things will pick up soon.
 

minbari73

Registered User
Mar 28, 2016
9
0
Of course I have no idea what stage your Mother is at, but if it's any indication given that you think she doesn't recognise you and she's refusing to eat, it could be later stages. This sounds similar to the last few weeks i've spent with my Mum, though luckily in a good nursing home not a hospital. It started the same, refusing solid food, then refusing mashed food, then refusing water. Her eyes closed and she wouldn't open them, then she got up and fell over and then couldn't get out of bed. The nurses said she was conscious, but apart from her mouth closing on a moisture pad, she showed no sign of consciousness. Her eyes opened for a second or two when she was moved to be cleaned, but I was assured that was because of the pain as her body was shutting down. Her kidneys were failing. I spent her last week with her at her side 10 to 12 hours a day and after two weeks of no food or water she finally expired last week. It was a hellish experience I wouldn't wish on anyone. There's no positivity or "coming out of it" and nothing anyone can say will make it better. The only thing to do is be with her, hold her hand, stroke her forehead, speak to her even if you think she's asleep. Her breathing will change constantly, sometimes shockingly so and when you leave every day, you'll think this will be the last time you'll see her alive, but then she may keep going ..and going .. and going.

If it wasn't for my wife and son, I don't think I would want to live anymore.
 

kindred

Registered User
Apr 8, 2018
2,937
0
Of course I have no idea what stage your Mother is at, but if it's any indication given that you think she doesn't recognise you and she's refusing to eat, it could be later stages. This sounds similar to the last few weeks i've spent with my Mum, though luckily in a good nursing home not a hospital. It started the same, refusing solid food, then refusing mashed food, then refusing water. Her eyes closed and she wouldn't open them, then she got up and fell over and then couldn't get out of bed. The nurses said she was conscious, but apart from her mouth closing on a moisture pad, she showed no sign of consciousness. Her eyes opened for a second or two when she was moved to be cleaned, but I was assured that was because of the pain as her body was shutting down. Her kidneys were failing. I spent her last week with her at her side 10 to 12 hours a day and after two weeks of no food or water she finally expired last week. It was a hellish experience I wouldn't wish on anyone. There's no positivity or "coming out of it" and nothing anyone can say will make it better. The only thing to do is be with her, hold her hand, stroke her forehead, speak to her even if you think she's asleep. Her breathing will change constantly, sometimes shockingly so and when you leave every day, you'll think this will be the last time you'll see her alive, but then she may keep going ..and going .. and going.

If it wasn't for my wife and son, I don't think I would want to live anymore.
I know nothing we can say will make it better, completely respect that. Please let me say from experience that being with someone, as you did, is the most precious gift we can give as human beings. Being with. Thank you for posting.
 

Hazara8

Registered User
Apr 6, 2015
697
0
Many thanks for your reply Hazara8. Mum doesn't have a care plan yet so i need to follow this up. I am going in today to try and help her eat Sunday lunch. I worry so much and have spent so much time with mum over the last 8 years she has been diagnosed that i have become tired and jaded which I know won't help her. I spent 2-3 hours feeding her little bits in hospital, now when she spits out the food a couple of times I tend to give up. I was hoping the Home would have more success as they must have seen this sort of thing before. She also keeps her eyes closed for a lot of the time so she can't see the food. I talk to her the whole time saying how nice the food is. I'm not sure she sees much even with her eyes open (nothing wrong with her vision as far as I am aware). I will keep trying but mum and I are both exhausted from fighting this terrible disease.
Like so many others here, who have direct experience of this aspect of dementia, one can but appreciate the sheer burden of effort and relentless expectation which is one's lot when dealing with a loved one, reluctant or simply unable to receive food and drink. The hospital environment I am only too familiar with, having 'nursed' my own mother for one month, striving to offer food and drink, but to no avail. There was no question of forcing anything, but simply that innate desire for the one you hold so very close to your heart, to simply sustain life. At the end, I was using a syringe to lubricate her mouth, as it had become parched. A very difficult time. Mother never returned to the Care Home. But your mother has. Therefore, one simply takes each day as it comes, with close attention to any changes in habit and so on. Dementia can play havoc with eating and drinking. But I have seen what looks like a desperate situation, transform into a positive one. Every case is different. My mother too, kept her eyes shut for long periods. It would take some effort - gentle coaxing - before she would open them and look straight into my eyes and smile widely. I was probably the only one she genuinely recognised towards the end, having lived with her for twelve years. So, you carry on and you do everything that is humanly possible to care and to comfort. Beyond this, dementia makes all the rules. But, amidst what so very often feels like a merciless and hopeless endeavour, there exists something very special and which does not always transpire in the normal way of things. And that is, a depth of relationship which is brought about solely by the nature of dementia itself. There is, what I personally name 'a secondary bonding'. By this, I mean that the 'parent/child' relationship, apart from taking on a role-reversal process, becomes in some way intensified by way of the process and progression of the dementia with all its challenging and seemingly heartless onslaughts upon your loved one. Like a mother with a newly born child, nurturing, tending, aware fundamentally of a vulnerability, an innocence, a precious life - embraced by a love which cannot be put into words - when that is present, regardless of all else, it tells you very clearly about your humanity. And so, if there can ever be anything 'positive' to say about dementia, perhaps this is it. That 'secondary bonding'. And for me, it has remained as life-enhancing a reality now, no less than when it came about, without invitation, during that period not so very long ago. With very warm wishes.
 

hollysmum

Registered User
Sep 13, 2010
62
0
Of course I have no idea what stage your Mother is at, but if it's any indication given that you think she doesn't recognise you and she's refusing to eat, it could be later stages. This sounds similar to the last few weeks i've spent with my Mum, though luckily in a good nursing home not a hospital. It started the same, refusing solid food, then refusing mashed food, then refusing water. Her eyes closed and she wouldn't open them, then she got up and fell over and then couldn't get out of bed. The nurses said she was conscious, but apart from her mouth closing on a moisture pad, she showed no sign of consciousness. Her eyes opened for a second or two when she was moved to be cleaned, but I was assured that was because of the pain as her body was shutting down. Her kidneys were failing. I spent her last week with her at her side 10 to 12 hours a day and after two weeks of no food or water she finally expired last week. It was a hellish experience I wouldn't wish on anyone. There's no positivity or "coming out of it" and nothing anyone can say will make it better. The only thing to do is be with her, hold her hand, stroke her forehead, speak to her even if you think she's asleep. Her breathing will change constantly, sometimes shockingly so and when you leave every day, you'll think this will be the last time you'll see her alive, but then she may keep going ..and going .. and going.

If it wasn't for my wife and son, I don't think I would want to live anymore.
What a moving post, minbari73. I'm so sorry for your loss. At least you know your mum was never alone, and yes, maybe she totally made the choice that she did not want to carry on in the only way she was able. I wish you and your family peace.
 

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