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Who am I ? I won't know myself soon!!!

DianeW

Registered User
Sep 10, 2013
786
Lytham St Annes
I am sure she will settle down, please try not to worry too much, I know it’s easy for me to say, but sadly it’s all about managing this disease and keeping your Mum as happy as she can be X
 

imthedaughter

Registered User
Apr 3, 2019
520
We had seemingly endless conversations about food when Dad first moved into the home. To be honest it's still ongoing, but the home are a bit more used to him now in terms of what he will and won't eat. They even had a nurse come in and speak with him about why he won't eat what he's given and so on and they agreed some 'safe' foods which were tea, toast and fruit. The home has all of those things always on hand though so at least that's easy.

One thing to bear in mind is that dementia dulls the taste buds. Your mum complaining all food is bland could be the dementia. In which case, she needs to be offered some things which have a stronger flavour and things which are sweet and or sour as those are the last to go. So some strong salt and vinegar crisps, for example, even if she didn't previously like them, or say a sweet and sour dish, or pineapple juice. You've got the added issue that your mum was always fussy, but she has to eat and it's the home's job to make sure she does.

Easier said than done, but try not to worry about whether the home is trying hard enough to keep her fed, it's clearly something they are working on. You can ask but I'm sure they are offering snacks in-between meals. At Dad's home you can barely move for biscuits coming round, he gets fed something every hour, his blood sugar is never allowed to drop, but he only eats small meals so it's not too much.
 

annielou

Registered User
Sep 27, 2019
1,766
Yorkshire
Thanks @DianeW @imthedaughter xx
It sounds like mum is refusing to even try to eat most meals now and is mainly just eating the things I take in. They don’t know exactly how much of those things she is eating cos they say its hard to monitor as she keeps them in her room and is very possessive and private and doesn’t like staff to look through her things, but they see her walking about eating the chocolate bars and things at times.
If I ask mum if she ate the things I took, or if she liked a particular thing she cant remember. She knows I take things and she eats some but doesnt remember what they were, or how much she ate, or if has any left. It makes it hard to take anything different and know if she ate it and enjoyed it or not as she doesn’t remember. If I ask if she wants anything mum can’t think of anything. I’m limited in what I take as mum keeps them in her room so I stick to packet of crisps, cake bars, biscuits and chocolates bars and bags.
If she’s like she was at home mums room probably has part bags of sweets and biscuits dotted all over in her drawers etc. At home if she opened a bag or pack and didn’t finish them she’d leave it out a while picking at it occassionaly then pop them in a cupboard or drawer in the living room or kitchen and forget about it. I used to sneakily throw things away if I found them and they’d been open a while or passed the used by date as mum wouldn’t, if she spotted them she’d say they were fine and was saving them, so there could be all sorts lurking in mums drawers at the CH. I find not being with her and not knowing exactly how she is really worrying and frustrating, though I doubt I would do a better job than CH, but it’s hard being removed and worrying from a distance.
 

Pete1

Registered User
Jul 16, 2019
893
Hi @annielou, sorry to hear about Mum. It is a real problem, when my Mum went into care they involved a dietitian to increase Mum's weight, it was problematic even though I was (in those times) able to go in an assist and encourage Mum to eat lunch. I think you mentioned that a dietitian was involved with your Mum, so they should be looking at different strategies (they ended up giving Mum more frequent smaller meals of things she could manage - and it worked). There are different types of the high calories drinks (some milk shake like and other more fruit juice), my Mum used to take some of it but never enjoyed it. They were also recording how much Mum was eating at each meal. It did work, but it was a constant battle.

The reality is that it is extremely difficult, and more so for you as you are unable to assist Mum in the way you would like to - I can speak from experience by saying even if that doesn't make much actual difference to Mum's weight it does make you feel a bit better about things. So I really feel for you. I think it is perfectly natural to be worried and frustrated (the restrictions are so unfair). I know it doesn't really help, but you can't do much more - you are actively involved in Mum's care and monitoring her well-being, you are looking out for her as you have always done. I hope that there is some lifting of restrictions that will allow you to spend more time with Mum. I wish you all the best.
 

imthedaughter

Registered User
Apr 3, 2019
520
Thanks @DianeW @imthedaughter xx
It sounds like mum is refusing to even try to eat most meals now and is mainly just eating the things I take in. They don’t know exactly how much of those things she is eating cos they say its hard to monitor as she keeps them in her room and is very possessive and private and doesn’t like staff to look through her things, but they see her walking about eating the chocolate bars and things at times.
I mean you can lead a horse to water - all you can do is take in stuff you think she may eat if that's what she's eating. But the home really must try to ascertain how much she is eating, I think - even if it means checking on her more often which may annoy her. And obviously keeping an eye on her weight which it sounds like they are.
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,009
High Peak
My mum was much the same in her CH - getting her to eat was a nightmare. I do think dementia causes changes not just in appetite but also in the type of things a person likes to eat,. Many of us have found our PWDs develop a sweet tooth!

Like you, I would take in a goody bag with chocolate (lots!) crisps and biscuits. I discovered she also persuaded the staff to get her more of these things too! But... if you couple the availability of these easy 'foods' with the person's decline in appetite, they can practically live on chocolate and biscuits whilst continung to refuse 'proper' food. Much like a child...

What I'm saying is, maybe if she didn't have a private stash of goodies she would be hungry enough to eat care home meals? But I know how hard this is. With mum I was so concerned she wasn't eating that if anything I'd take more goodies in, thinking anything was better than nothing, so the situation continued. It's a difficult balance.

[Just to add, when my son was very little he was very hard to feed. He would only eat jam sandwiches or fromage frais - getting protein into him was a nightmare. A well-meaning health worker told me 'children will not starve themselves so just stop the sweet stuff and give him proper food.' I kept it up for about 5 days, not giving in to his requests for jam butties. By that time he was weak and thoroughly miserable but still not ready to eat proper food! Even my daughter (a couple of years older) was pleading with me to let him have a yoghurt... Long story short: I gave in. He lived on jam butties (and expanded it to chicken nuggets too - yay! Progress!) for a couple of years then suddenly got bored and ate normally (pretty much!) after that. So I'm not sure the 'don't give any chocolate' idea would have worked with our mums...]
 

annielou

Registered User
Sep 27, 2019
1,766
Yorkshire
thanks @Pete1 @imthedaughter @Jaded'n'faded xxx
Dietician said she would contact care home and tell them things I'd said mum liked and some of things I'd said as possible reasons why she may not be eating and the care home have said they are trying to encourage mum to eat and they weigh her regularly. Dietician said they'd tried mum with both milky and juice type supplement drinks but she wouldn't have either, from sound of it I don't think she'd even try them and I think that's the same with meals so not sure what more they or I can do really.
I'll carry on taking my goody bag and hoping she'll start eating again sometime soon. I started off just taking her hobnobs cos thats what she used to have for breakfast and I didn't know if the home would have those, plus a pack of cake bars or blue ribands as they are her fave things she had at home and a few chocolates and sometimes a 6 pack of plain crisps or french fries as treats thinking they'd be there for mum on top of her meals. I've increased a bit over the weeks and now every week I take a 6 pack of crisps, take both the pack of cake bars and blue ribands each week instead of just one of them, a couple of multipacks of chocolate bars so she has enough for at least one a day for a week, plus a few extra chocolates, and a small bottle of coke, upped to 2 sml bottles this week after talking to dietician about her drinking. I did wonder if it might make mum eat the CH meals if she didn't have the crisps and sweets I take to rely on but am scared to take the risk she won't eat at all.
 

Sarasa

Registered User
Apr 13, 2018
2,011
Hi @annielou, loads of good advice. It's so annoying that the current crisis means you can't visit. Firstly you'd be be able to check there wasn't a mouldering stash of stuff in her room and two you could sit with her while she's having lunch or at least se what she's having and go on about how lovely it all is, and encourage her,
I wouldn't worry too much, hard though that is, as I'm sure either your mum will find something that she likes that the home provides or she keep up the calorie intake from the stuff you bring in.
 

anxious annie

Registered User
Jan 2, 2019
590
I hope you have managed some better visits @annielou , so you don't need to worry quite so much. I think it's true what others say, your mum will have "up and down" times, it will never be good all the time. Hopefully you can talk to staff and get a clearer picture. Sending hugs xx
 

annielou

Registered User
Sep 27, 2019
1,766
Yorkshire
I hope you have managed some better visits @annielou , so you don't need to worry quite so much. I think it's true what others say, your mum will have "up and down" times, it will never be good all the time. Hopefully you can talk to staff and get a clearer picture. Sending hugs xx
Thanks x next visit tomorrow. When my sister spoke to home mid week mum was still down, and still wasn't eating much. They said they watch mum and if she's not eaten or not had much they try take her for a cup of tea and couple of biscuits after so she'll at least gets something. Her weight is still same and GP is keeping monitoring her bloods to keep eye out for anything there.
 

annielou

Registered User
Sep 27, 2019
1,766
Yorkshire
Found out today that mums placement at Care Home is permanent. It's been a bit confusing, but that has been par for the course with us and Social Services so far.
At the end of last week my sister got the report from CHC saying mum wasn't eligible for funding, which we expected as they had said at DST meeting and over phone to me the week before that recommendation of nurse doing the DST report that mum didn't score high enough. Also my sister had an email from SW asking for signed top up form and financial effects form and SW said that they were taking over mums care and sent letter of intent to CH to say they were taking over mums care. My sister emailed back a question about a part of email which was confusing and we thought was a typing error and also asked if we could give notice on mums property or did we need to wait for something else to say everything was final and mums placement was permanent. SW replied it was a typing error but didn't answer permanent question directly. Today SW sent an email with schedule of agreement-individual placement to be signed. I signed it and sent it back and asked again if mums placement was permanent and if we were now in position to give notice on mums property. SW replied saying mum had been permanent since the 6th and we should have given notice on her property when we were told she was permanent. We kept being told mum should stay in CH and if CHC funding was given then SS would step in, but we hadn't had any confirmation to say financial assessment had been done or that SS had agreed mums place was permanent and as SS haven't always done as they said before we wanted to make sure it was definate before giving mums house up.
On the placement agreement it said amount purchaser (social services) paid and user (mum) paid and third party (family) paid. There is no top up amount for us to pay, but amount mum pays is down as £148 a week which I understand is out of her state pension leaving mum small amount each week which we expected but don't really know how the money is paid. So when I emailed SW I asked how mum part was done, did DWP pay them direct or did we need to arrange anything. The SW replied that she didn't deal with finances and was sure the finance department would have sent us or they will send us a letter soon and their contact number will be on the letter sent to get in touch for clarification. So we're not sure if financial assessment has been done yet or not and how mums portion is organised yet.
We're going to take it that mum is now permanent at CH and start letting people know. As we didn't get email from SW till late afternoon today it was bit late to start to do much, but I've emailed council about mums door sensor/fall alarm asking for it removing and will write letters for DWP to say mum is permanent over weekend and also check how to let housing benefit know about mums change of circumstances and email mums landlord to give notice too.
Its a bit annoying not knowing details yet, if financial assessment done or not, and also bit annoyed SW seems to think we knew mum was permanent but never actually said it specifically even when my sister asked earlier this week. But I've decided to start sorting things and letting people know.
We have been expecting it and waiting for decision so we could get things sorted instead of being in limbo waiting for it, but it's still sad that decision has been made that mum has to stay somewhere she doesn't want to be and can't come home.
 

Sarasa

Registered User
Apr 13, 2018
2,011
So glad that is sort of sorted, though annoying that social services think you know things when you don't. Thinking of you as you start sorting her stuff out.
From what you said it sounds like your mum is in the very best place she could be, Hope the visit tomorrow goes week.
 

Bikerbeth

Registered User
Feb 11, 2019
1,706
Bedford
That is good news that you have finally got the decision. Your Mum might not want to be there but she does need to be there and it certainly seems the staff are doing all they can to get her to settle. I know the next weeks will be tough trying to get ‘things’ sorted but hopefully in the longer term it will reduce the stress levels.
I really hope that you have a good visit tomorrow 🤗🤗🤗🤗
 

anxious annie

Registered User
Jan 2, 2019
590
It's good that you have finally been given a decision about a permanent position for your mum.
My mum is poorly at the moment, with a recurring medical problem that was made worse earlier this year with GP reluctant to visit her care home.
I so want to visit, but not allowed as member of staff tested positive and now visits are banned, unless end of life. Mum is not considered to need a visit from me. I am finding things so tough at this time, and not confident things will improve in time for her. Support isn't always there when you might expect it to be
 

annielou

Registered User
Sep 27, 2019
1,766
Yorkshire
Thanks @Sarasa @Bikerbeth @anxious annie xx got my fingers crossed for a better visit this week, though it sounds like mum is still the same so visit may well be like last week, but I'll go being cheery and smiley and hope for best 🤞
Sorry to hear your mum is poorly @anxious annie and that you can't visit it is so hard and unfair that can't be there at all let alone when your mums not well. I hope things improve soon🤗🤗
 

annielou

Registered User
Sep 27, 2019
1,766
Yorkshire
Mum was in better mood and we had quite a lot of smiling and laughing and about 25 minutes visit which is longest so far. She looked so frail, thin and wobbly today though, 2 carers lead mum today and helped her sit down in chair as she was wobbly, carer said mum was a bit unsteady because she wasn't eating. I just wanted to give her a hug and bring her home. Though I know neither is possible and bringing her home wouldn't be for the best. Mum didn't look too happy at first but then she saw us and said who we were and smiled. I shouted Hello mum and waved. Mum asked if we were coming in. I said We can't but you can sit here and have chat so she let carers help her sit down. Hubby passed goody bag in to carer while I was saying hello.

My sister asked CH on phone the other day if they thought it was ok for us to take a sandwich in for mum in hope of tempting her to eat cos we sometimes used to buy a ready made prawn sandwich when supermarket shopping on saturdays and CH thought it was worth a try. I said we'd taken mum a prawn sandwich in and mum said Oh lovely. We talked a minute about eating and us thinking she might like one for a change cos she used to enjoy them. Carer asked mum if she wanted to eat it now but mum said Oh no I'll have it later, she looked like the thought of eating was too much, held her tummy and pulled a face. She probably feels sicky because she's hungry. Mum told carer I'll have it at teatime. The carer said I'll still be here at teatime so I'll make sure they get it you and come check you eat it and her and mum laughed. Carer said she'd put it in fridge and told mum she'd take her bag and put it in room for her was that ok and mum agreed. Apparently mum can be quite possessive about her things and carers touching them so I think they try to make sure mum agrees to them doing things like that rather than just do it. Carer had her hand on mums shoulder and Mum stroked her hand and told me and hubby She's my friend she's lovely. Carer said Thanks, you're lovely and then took her things away.
Mum asked how we were but said she couldn't hear me properly so I spoke up a bit and said can you hear me now, mum said not really so I spoke bit louder and said Do I need to bellow? which made us laugh Mum joked No need to shout and I shouted What do you mean and we laughed again. Mum said they'll think we've lost it, she turned and said something about people in corridor hearing us but she was still smiling so she wasn't bothered by it which was good.
Carer came back with one of the sml bottles of coke we'd took mum and asked if mum fancied a drink and gave it her. Mum didn't look bothered but I said Why don't you have a drink it'll be nice and might give you a bit of energy. Then mum made us laugh as it was quite fizzy and she pulled a face and OOHed when she had her first drink. Mum said it was really cold and said the bottle was heavy. We joked about it giving her a bit of fizz and pep and a sugar rush and mum said she'd be whizzing around.
I told mum she looked pretty in pink today and her hair looked nice, it was a bit smoother today. Mum said she hadn't seen it and tried to see her reflection in glass, she said she wanted it cutting and I said they're all shut at mo and we chatted minute bout lockdown which mum was fine about and said Well my hair'll have to wait then.
I'd got my phone out to show mum her hair but couldn't cos of reflection off glass, while I had it out I thought I'd take a couple of photos of mum as my sister had asked for some before, I gave hubby my phone so he could take photo while I chatted. Mum saw him taking pic and said he was cheeky but smiled for a pic. Mum said I love - (my hubby) then she said OOH that doesn't sound right does it, And you of course, I love you Andie, but I love - he's lovely, so are you though. We joked about her preferring hubby to me, which is an old joke between us as mum has always thought hubby is lovely and often tells people. Its nice mum remembered as for a while she kept mixing me and hubby up with 'friend' and friends hubby. When mum did that she didn't like him cos she thought he'd left her daughter for 'friend' or she thought he was 'friends' hubby and shouldn't be with her daughter cos he was too old for me.
Mum asked if I'd seen my sister so I told her we'd text, she was ok and said to say hello and she loved mum lots which mum smiled at. I told mum sis had sent me a few more photos of her grandson to show her so I showed mum and we talked about him for a bit. Mum asked if I missed her and I said I did and I loved her lots. She asked if we would be coming again and I said Yes next week and mum said Lovely, you can come anytime. Then went on to tell me about visiting being on a sunday afternoon she thought it was, but it was written on that thing they give us so I could read it later to check. Not sure what that was about but I smiled and said OK.
The walking lady came by a few times during visit and she asked mum if she was ok? mum said she was and patted her hand. When she walked away mum said Bless her she's a bit mental, but she's ok. Then mum said I feel sorry for her cos she's got nothing cos they take all her money so I've been giving her sweets. Her parents take all her money and she can't read so she can only do little simple jobs so she has nothing, she's a bit mental but she's lovely, isn't it awful her parents doing that to her. I said Well they'll look after her here now won't they. Mum said She had nothing when she came here no clothes bless her. I said She's got some now. Mum said They gave her em here. I said Well that's nice then isn't it they're looking after her. Mum said Yeah when she came here about 4 months ago she had nothing no clothes or owt, they gave her em here. One of carers told her look these are for you and we won't tell your mum n dad, she's so grateful when you give her anything she says Oh thank you and she'll put sweets in her pocket and say I'll save it for later. Isn't it awful though her parents doing that to her. I said It is but she's here now and staff will look after her won't they and mum nodded. I changed subject and showed mum some photos of some things I'd made recently and got her laughing about covering myself in bits of fluff.
Mum noticed I was crouched and said to hubby Look at her here crouched down why are you doing that? we said so I was more her level and mum said It'll hurt your back I'll let you go. I didn't want her to go yet so I bobbed up and down saying no it's fine look. Mum said I looked mad doing that and laughed. She said I don't want you hurting your back. I said I'm fine I just look weird, Hubby joked I just looked like hunchback of notre dame so I staggered round saying 'the bells the bells' and got her smiling and laughing again and joking about me being limber and then we chatted for a while longer.
We talked a bit about her eating, mum says she's skinny. She showed us some bruises on her arms and said it's cos she bumps into things and agrees when we say it's cos she's not eating she's wobbly and she says staff are always trying to get her to eat. Like she knows thats why she is skinny, wobbly and feeling off it but she just doesn't eat when it comes to it. I said we'd taken her another goody bag with more sweets and biscuits in and mum said she'd gone off em and looked like when she'd thought about eating sandwich earlier. Though she had looked pleased when we told her about sandwich and also when I said we'd put some mini cheddars in, mum said OOh I used to love them thanks. She said she'd try eat but she always says that.
After 2O minutes mum said I'm going to go now I'll see you next time, then asked Have you been shopping? I said We're going later, mum said Are you getting me some if, I nodded. um said Well make sure you get some money out for me to pay cos I don't want you paying for it. we were going shopping and bringing her some. I just said Ok. Mum mentioned me crouching again and I did a bit more bobbing and nearly fell in flower ball near door which made mum laugh and we talked few more minutes before mum said she was going again. I thought I'd let her go still in a good mood and before she got too confused and tired. Mum said I'll struggle to get up now, it took her a while to push herself up and stand, Mum said she didn't think she could lift the chair and I told her carer would move it when they came to let us out of gate. We were just saying bye and see you next time when hubby spotted DM coming past with drinks trolley and waved at him so he came over. Mum told him I'm going now but not home just to my room. Mum turned back to us and I thought she said Here's my friend, but he said mum had said fella and he joked Don't tell my wife, mum laughed and said I don't mean fella like that. He asked mum to wait for him and she sat in corridor then he popped his head out of door for quick chat. He said That's put a smile on her face and I said she's been in a much better mood today, she was so low last week. He said that's good, it's just her eating though isn't it. I said we'd talked a bit about it with her but don't know what to do. We told him we'd brought her a sandwich today hoping might tempt her. I could see mum looking so I shouted I'm just saying we brought you a prawn sandwich and you're going to have it later aren't you. Mum said yeah and DM joked Or we'll fall out and mum laughed. I said I didn't know if she'd have it but worth a try, he asked where it was and then he said he'd ring us if there were any changes or problems and we said thanks and shouted bye and love you lots to mum.
Overall it was nice to see mum smiling and laughing, she looked clean and tidy and the staff we saw with mum looked caring and tried with mum but she really did look thin and still isn't eating and that part is sad and I really don't know what else to do.
 

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