Dementia Support Line
Real stories
Mum's eating problems got worse as her dementia progressed
People living with dementia may experience problems with eating and drinking. Here, Lucy describes her experiences with her mum, who has Alzheimer's disease.
Mum's eating problems
Mum would eat odd things, unable to cook anymore, or forgetting to eat, loving sweets and cakes, but surprisingly losing weight. Not recognising when food was spoiled, out of date or mouldy.
I considered that the best way I could help her was to arrange for meals on wheels to be delivered to her home. I also ordered a food delivery on a weekly basis from the supermarket giving her more variety and choice.
She enjoyed the company from a local care agency. They were supportive and kind helping her with housework and in making her shopping list. They were good company for her too, especially in winter, the colder weather restricting her to the indoors and spending more time alone.
Lucy with her mum, Rosemary
‘She had been getting quite confused about the day and time.’
My sister hoped to help her focus by giving her a diary - sort of timetable to try and focus her on. When was breakfast, lunch and dinner, when she should feed the dog. Little reminders of when she had dental or doctors’ appointments and reminding her that the dentist suggested she brush her teeth both morning and evening.
On one of her OCD events, lovely fresh salads and ready meals would be decanted into a bin liner. Just one or two items at a time and then taken outside to the communal skip. Any passer-by must have thought it was their lucky day, free food. If the neighbours noticed nothing was said.
Getting more support at home
I heard from a community mental health nurse who suggested trying to arrange for the nurse to visit and see if we could get the medical team to prescribe a ‘patch,’ which would go on her arm weekly therefore having no need to go back to the memory clinic.
The GP suggested the community nurse pop in. He could get a prescription for medication which may help to improve her memory.
I enlisted more help from the agency to go in and check up on her; do light housework, or just help her to make a snack for lunch.
Her daily care chart mentioned: ‘Rosemary must have done a talc dance today; the bathroom was festooned in it’.
I did Mum's washing and sorted out her clothes, hanging them up to dry. I checked out her fridge for expired products and we ate lunch together whenever I could, but I was already working and caring for my own children.
‘I ordered food weekly, trying my best to help; however I would find lettuce in the freezer and ice cream in the fruit bowl.’
The fridge would be turned off for an unknown reason and unspecified amount of time.
One of her carers wrote, ‘got a quiche out of the fridge for lunch, it had mould on it; Rosemary became loud and aggressive when I advised her not to eat it.’
I ordered bin liners and bleach-and couldn’t understand where they were going.
Shopping for food and drink
Wine was the other thing that went missing. Of course Mum was an adult, so she would take herself, with her wheelie trolley, up the local shop and buy wine. But because she was forgetting when she last had a little drop, she would have another and maybe another. The good thing was, she could only drink what she could collect.
I have no idea whether during this time she knew how much things were worth. I am quite sure she didn’t know the difference between a five or a ten pound note. I like to think the local shop was run by honest people and by going with her on occasion, I was able to show she was not alone. Soon to my relief, my brother took over the finances.
Mum became less confident in the use of the microwave following an incident of one burnt pan and a suspicious looking mark on the floor.
Food was not being rotated, mould was a common sight in her new fridge. She started to turn off the fridge. She forgot what time and day it was often, in spite of my big clock indicating the time, day and date. She kept on changing the day, I had to adjust the time each time I saw her.
I arranged for an electrician to come. She gave him a cheque with the wrong date on it, not sure if he ever did get paid. But he was a kind soul so he may have excused her.
Problems eating out
On the surface, we looked fairly normal going out together. On closer examination the onlooker could see that Mum was dressed in several layers of clothing, at least one of which was her pyjamas. And on closer inspection, the outer layer holds a few drops of yesterday’s dinner.
Her teeth were starting to decay at a rapid rate. The toothbrush lays suspiciously dry together with the shower and reminders went unnoticed.
I would take Mum for an outing to the local tea shop, a lovely shop in a quintessentially English village. The owner became used to us and tolerated our custom in a polite and friendly manor. We enjoyed cake, cappuccino and polite conversation.
Mum was starting to be unable to cope with her day to day life. She used to know she had 10 grandchildren, but now thinks she has 6. She is unsure of the season, to her it is March - clearly the leaves are falling - it is October and Autumn.
Eating and drinking advice
If you are experiencing any of the challenges Lucy described, please read our factsheet on eating and drinking.
Sharon Hornby
saysJulie Newton
saysSandra Faulks
saysMy lovely hubby was diagnosed with Mixed Dementia 6 years ago ,and has other (physical) health problems ie heart disease,one kidney removed ,high BP
We went for his medication review related medical today (blood and urine tests etc ) He has lost weight since last time (12 months ) of 8 lbs ,which is a lot when you consider he now only weighs 9stone 7 lbs
Before the Dementia took hold ,he weighed about 12 stone
I am battling to keep his weight up now as he keeps reiterating he’s not hungry!Ive tried everything the doctors/dietary specialist nurses have suggested,eg lots of hi calorie snacks ,full fat milk etc but his weight has dropped again
I’m at my wits end to know what to do to try to maintain his weight
Marie L
saysMarion King
saysHi I have found these blogs so useful. My daughter in laws mum has had Alzheimer’s and front lobal dementia for about 10 years. She does not speak or understand anything or know her name or who her daughter is or her own husband who cares for her at home. She refuses to eat unless it’s anything sweet. Has gained weight and does not want to exercise at all. Does it really matter about her eating. I feel they should just let her eat what she wants at this stage in her disease. She is double incontinent wears nappies but he refuses to accept he really needs more help. She refuses to get up so he now has help some mornings as she refuses to wash also. It’s heartbreaking to watch. Where is the help he desperately needs.
Edith
saysMy Dad is 99 and has Alzheimers. He is still living at home but now with a live-in carer. He had a urine infection at the start of lockdown and quickly became psychotic and unrecognisable from the Dad we knew. . After a few weeks he settled into just being confused but quite calm and sweet. It costs £900 a week (although I understand this is at the low end!) plus all the extra household costs bills food etc. While his general care is ok we have realised the carers limitations, She can't cook (we provide ready meals) and doesn't engage with him a lot except for personal care. So he gets lonely and bored but lights up when we are able to visit and take him out. We are grateful he is not in a care home as that would have been our worst nightmare with all the restrictions but the live in care is only as good as the carer. Care of elderly people in this country is so undervalued and underfunded and until it is properly addressed families will just struggle on under the radar.
Charlotte Williams
saysSadly relating to alot of this. My mum was diagnosed 2 years ago with mixed dementia-vascular and alzheimers. Her mobility was the first loss and she fell a year ago and fractured a hip never really regaining her mobility as she has forgotten how to do it. She sadly went into residential care and has virtually stopped eating in lock down. She is losing Kg of weight each month. She just is not hungry. She used to snack on biscuits and crisps and now is not interested in any food at all. She has been hoisted now for the last 6-8 wks. I worry we have missed something- I am a doctor so I find myself thinking what it might be causing her weight loss. She is such a shadow of who she was-lockdown in the care home is awful.
My only way to show her love now is to send her flowers-as she still smiles when these arrive.
My heart goes out to anyone who has a loved one with this illness-it is so sad and cruel to watch this person you love disappear.
Jackie
saysHello Charlotte my husband has early on outset Alzheimer’s he’s only 65 and he’s had it for over five years, things became worse during this pandemic the hardest thing was I had to admit that I needed some respite so he went into a care home that is basically round the corner from where we live but on the third day I had a phone call saying that he had been admitted to hospital they thought he had a urine infection but I didn’t think this was the case because he has no understanding of what’s been said to him I think he’s such struggled with been quarantined. They couldn’t cope within the hospital and allowed me to go and sit with him all day it was a terrible week as on several occasions he had to be restrained so they decided at the end of the week after seeing two other doctors we’re going to admit him to a different hospital I think deals in mental health to try and see if they could change the medication and if it would make a difference,, But things got worse and I was unable to be able to visit him he got Covid but thank God none of the symptoms, but then had two seizures while he was there and was admitted back to the General Hospital for a brain scan they didn’t think there was anything there so he was admitted back into the mental health hospital where he was treated very well when I used to ring him used to cry over the phone which made me feel awful as I was not allowed to visit like many more that was unable to visit their loved ones I was so afraid that he would forget who I was so are used to ring every day about five weeks ago they said he was ready to leave and settle into a nursing home by then he is totally incontinent lost his speech and only says very little words totally heartbreaking so of course moving in to this care home was going to be really unsettling for him and confusing and the government rules were that you had to be isolated for two weeks even though he’d already had Covid and was swamped before he went to the home still not being able to visit him he was there for three days and struggled big-time as he has had challenging behaviour when it comes to personal care he doesn’t understand what people are saying to him, I got a phone call saying he tried to take the radiator off the wall and taken the fire extinguisher down they found him on the floor early in the morning With a cut on the side of his eye and because they weren’t sure whether he had banged his head they had to ring the doctor and then was taken to hospital again for another scan which they had to sedate him to be able to carry out the procedure so he then ended back up in the mental health hospital which I felt more settled about As that’s where he’s been for the last five months as the staff are really good and have learnt different strategies how to get things done with him, All I want to do for the last five months I see him and hold him I got my first visit last week and was totally devastated when I seen him the change in this five months he didn’t know who I was but I knew that he just loved being held and comforted but I think really it could’ve been anybody holding him he just loved that human touch and comfort that we all like I also got my second visit yesterday I thought maybe this time he might know who I was but he didn’t, one of the nurses gave him a piece of cake on a plate I couldn’t believe it he just put the whole plate up to his mouth and shove the cake in heartbreaking to see they say now he’s ready again to be moved on to the care home the worry and anxiety is terrible of how it’s all going to go as we do not have a lot of choice of care homes that you can go to due to his challenging behaviour I have a really good supportive family Heartbreaking is my sons haven’t seen him and I’m going to get a real shock when visiting is allowed although my family very caring and supportive I feel so alone what a terrible illness that steals everything from you 😢x
8ONYYTFGHYTUJYT
saysit is really
Melanie Bowland
says
Alzheimer's Society
saysHi Melanie, we're very sorry to hear about your mum's diagnosis.
If you are based in the UK, we'd recommend calling our support line and speaking with one of our trained dementia advisers, who can listen to your situation and provide advice and support. Please call our support line on 0333 150 3456. (More information on opening times: https://www.alzheimers.org.uk/dementia-connect-support-line)
You may also benefit from joining our Talking Point forum, a place for carers and other people affected by dementia to share their personal experiences, and offer advice and support to others going through similar situations. You can browse the conversations within the community or sign up for free: https://forum.alzheimers.org.uk
It sounds as though you may potentially be based in North America though, in which case you may be able to benefit from contacting an organisation such as Alzheimer's Association, who may be able to offer more support.
We hope this helps, Melanie.
Alzheimer's Society web team
Betty McGlinchey
saysSo sad to read these yet comforting. My mum is 75 and declined the past year. She sleeps in livingroom and has been hoisted in and out of bed for 1 year. She had a stroke 24 years ago so communication has always been a problem. We guessed she had infections then delirium and now finally diagnosed with alzheimers. She eats very little, is shrinking daily with her lovely gold rings now falling off. She has just finished yet another round of antibiotics and started memantine 2 weeks ago however over last 3 days is now forgetting to drink. I think she is now deyhrated so I need to visit 3 times instead of once over next few days in an attempt to keep her out hospital. She has carers 3 times a day too but they don't have time to wait until she drinks. I am wondering how long we can keep her at home as feel as soon as she goes into hospital she is likely to deteriorate.
Maria Thomas
saysCan I ask as I haven't seen any mention of Pooing,sorry to put it so bluntly, my mum has not been feeling it come and has unfortunately although wearing molly pads still gone through and getting out of bed and it messing everything and her as you can imagine. This is also happening during the day sitting in the lounge and it just happened my daughter has to help as I am disabled and can't help clearing and cleaning up which I have cut-out things that might irritate her tummy and given her a Loperimide pill just one to try and ease it.My daughter is working from home at the moment so can be with her during the day and is living with her so is able to be there at night but is moving soon , I just don't know what to do, I would say she is about stage 6 now.Thankyou for any suggestions.
Anonymous
saysHello Maria,
Thank you for getting in touch. We do have information on toilet problems and continence, which you may find helpful: https://www.alzheimers.org.uk/get-support/daily-living/toilet-problems-…
We would also recommend calling our Dementia Connect support line on 0333 150 3456. A trained dementia adviser can listen to your situation and provide ideas and support. You can read more about the support line (including opening hours) here: https://www.alzheimers.org.uk/get-support/dementia-connect-support-line
We hope this is helpful, Maria.
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Alzheimer's Society blog team
Maria Thomas
saysThank-you,, I also have an assessment person visiting her on Monday so hopefully we might be able to get some things in place to help.
Tracy Pomeroy
saysHi my Mom isn't eating much at all. In a week, all she has had are tangerines and a bite of something here or there. She says she doesn't like anything I give her, even her favorites..including ice cream. She is drinking as of today.
Elaine Kennedy
saysHi my mum won't eat at all done days she now says 6 stone she says she feels sick all the time .waiting on results of ct scan and she drinks the ensure bottles very challenging.
Anonymous
saysHi Elaine, thanks for getting in touch.
Sorry to hear your mum is having difficulties with eating, that can be a common problem which is very challenging as you say.
We have some advice on our website on eating and drinking that you may find useful: https://www.alzheimers.org.uk/get-support/daily-living/eating-drinking
There can be different reasons why somebody with dementia might not want to eat. If your mum has lost her appetite, you may find the tips on this page helpful too:
https://www.alzheimers.org.uk/get-support/daily-living/eating-drinking
I hope these pages are helpful, but please know that you can also call our Dementia Connect support line on 0333 150 3456 to speak to one of our dementia advisers. They can give you information, advice and support tailored to your mum's situation. More details of our phone support (including opening hours) are available here: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
Best wishes,
Alzheimer's Society blog team
Jocelyn george
saysThis is really helpful information.
Its good to read other people's difficulties and experiences.
I am coping with my husband's dementia and finding it very challenging.pp
Andy Tyson
saysMy client is a75 year old male who has dementia and has recently started to eat frozen uncooked food early hours of the morning is this common in dementia patients
Jane
saysMy mum went into care in August and hasn’t really been eating since, she’s currently in hospital with an infection of salivary glands for which she needs to eat and drink. Prior to August she was obsessed with eating sweet things despite being diabetic and now she says everything, including water is too sweet, I just don’t know what to do, has anyone else had experience of this?
Anonymous
saysHi Jane, thanks for your comment.
Sorry to hear about your mum's recent issues with eating and drinking.
We have a factsheet with information and tips on this subject which you may find useful. You can view it online or order a free copy here: https://www.alzheimers.org.uk/get-support/daily-living/eating-drinking
If you need any further support, don't hesitate to contact our helpline to speak with one of our dementia advisers: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
I hope this is helpful,
--
Alzheimer's Society blog team
Denise
saysMy mom is eating napkins tiolet paper etc. Mostly chewing on it. Afraid she may choke! Perplexed
Plz respond
Anonymous
saysHi Denise,
If you're based in the UK, we'd strongly recommend calling out support line on 0333 150 3456 to speak with an expert dementia adviser. They can listen to the situation with your mother and provide support. Find out more about our support line here: https://www.alzheimers.org.uk/get-support/dementia-connect-support-line
You may also find it helpful to speak with other primary carers and family members of people affected by dementia. They may well have gone through similar experiences. Our online community, Talking Point, is available 24/7: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…
We hope this helps, Denise.
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Alzheimer's Society blog team
marie barker
saysHi, my mum passed away last year , she had suffered for 10 years with this dreadful illness. In the last couple of years eating became a real problem, she refused to eat healthy dinners and became angry. Eventually we came to the decision to let her have what she wanted, she only wanted something sweet so we gave her bananas and custard, yoghurts, rice pudding and energy milkshakes, she was much happier and at least we knew she had eaten something. Mum was 92 when she died at home.
Patrick Hawkins
saysMy wife was diagnosed with dementia in Alzheimer's in 2012.I have managed to keep my wife with the help and support of experienced,trained,dementia nurses.Caring for a person with Dementia needs thorough understanding,knowledge,patience,and compassion far over and above General Care provided by Age U.K.
Successive Governments have failed to properly fund Dementia care.The financial burden of providing care and support falls on the family of the loved one living with Dementia.Attendance Allowance is currently £87.50 per week.In most parts of the country this pays for only 4 hours care!Care is needed 24/7.
Change is urgent and essential. PLEASE see PETITION change.org/dementiacare ,sign,and share.Signatures are needed to send the most powerful message possible to the Government.Thank you.
Marian Dial
saysI am so grateful for people on here, I suffer so much trying to help my mother and no one helps or advises me. The people on here help me to know it’s not just me that thing are happening to it’s everyone caring for someone.
Why do Social Services not advise the person caring. I feel that my mother is being left, if they explained what is happening and what will happen then that would help.
Mon Lisa
saysI am sitting now with my Mother who has Alzheimer's. We are in the hospital as she is no longer mobile she has developed a pressure wound that became infected. Trying 2get her to eat last night was a nightmare. She pocketed her food and it had 2b suctioned out of her mouth. Sometimes she eats and sometimes she pockets her meals. This disease is awful.
Anonymous
saysWe're really sorry to hear you're going through this tough situation with your mother. Please know that our Helpline Advisers are here for you seven days a week on 0300 222 11 22:
https://www.alzheimers.org.uk/get-support/national-dementia-helpline
In the meantime, we do have some information about the challenges of eating and provide some tips for carers here: https://www.alzheimers.org.uk/get-support/daily-living/eating-behaviour…
We really hope this helps.
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Alzheimer's Society blog team
Marie
saysMy journey through the sadness of Alzheimer’s with my mum I feel is arriving into the late stages. I forget regretfully the women my mum was and how we were so close and best of friends. I am sad too watching how my dad struggles with watching his beautiful wife and soulmate drift away . However I am grateful for having made the most of every moment with her and appreciated at the time what we still had and what she could still do. We still could laugh and love and enjoy!!
We don’t do much of that recently sadly. She doesn’t want to do anything or go anywhere. But my jewel for now is that she still knows who me and my dad are .... and I am blessed that for now she does.... I also have the nice memories I made an effort to register on this journey.