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

annielou

Registered User
Sep 27, 2019
1,766
Yorkshire
Mum had another little fall today but luckily it seem she's ok. I think she's probably a bit wobbly cos she's not eating much. At teatime the Care Home nurse rang to tell me mum had fallen. Nurse said mum was ok and had said she'd not hurt herself. Nurse told me mum was walking down corridor and stumbled a bit and lost her balance. She had a plate with her but it was only a paper plate so it didn't hurt her. Nurse said they were trying to encourage mum to eat something and she got up and decided to walk off down corridor with it. Nurse said mums obs were ok, her temperature was up a little bit but she was ok and they'd informed DR in case wanted them to do anything else and they'd keep monitoring her but mum was ok.
I also had a call earlier this afternoon from dietician about mum not eating. She said mum isn't eating much at all apart from the treats I take in. She said mum will say she's not hungry and doesn't want to eat. They have tried her on supplement drinks but she won't drink them, she'll only drink black tea. They'd tried milky drinks but mum wouldn't have them, I told them mum doesn't really like milk in drinks although would occasionally have a glass at milk. She said they'd tried her on a juice style one made with water but she wouldn't have that either. She asked what mum liked to drink, I told her not much really other than tea, I used to try encourage her to drink water but she rarely did, apart from tea she would drink coke and lemonade but likes it flat. I told her I usually take mum a little bottle of coke in her goody bag. She asked what sort of things I took her in and what sort of things mum liked to eat so I told her some of things mum likes and doesn't like. She said she'd talk to CH to let them know what she liked and she wondered if the home could maybe get a ready meal version of some of the things mum likes they could make her to try tempt her if others were having something mum didn't like.
We talked about reasons I thought mum might not be eating, I told her when I asked mum why she said she didn't like the food and when I asked her to try to eat more for me she said she did but she gets fed up and full up but I didn't know if that was real reason or just what she said when asked. I told her mum had not eaten much in hospital and said she didn't like the food there and also didn't eat cos she didn't want to be there and was upset and I wondered if that was same in the home. I also said mums teeth had been rubbing and hurting her before but CH had asked mum and she'd told them they weren't hurting. I said maybe she had got into habit of not eating much in hospital and carried on and cos not eating much for a while she'd got used to it and didn't feel hungry. She said that can happen.
We talked about mum losing weight last year and why and then getting her back to eating and how she used to eat better with us rather than on her own and ate better if carer sat and had drink and biscuit and chatted to her while mum ate when carer was there. I said don't know how she eats in home but maybe if not sat with others who are eating same she might not eat as well and might do better if someone was with her eating same and someone to chat to. I said I didn't know if the progression of alzheimers could be cause of her appetite waning and maybe not eating in hospital combined with that had combined. She said it does happen with alzheimers, there isn't lot can do about that apart from supplements and trying to encourage her. She said she would ask CH about where mum ate and who mum ate with and to see if they could encourage her that way. I said I wish I knew what was reason she wasn't eating, if it's progression of alzheimers, her teeth, cos she didn't like food, or was unhappy, or something else. It's hard cos I can't go in and be with her so can't see how she is at mealtimes and try encourage her or see if I can guess what reason not eating.
She said they weren't too worried about mum health wise cos she'd had review by GP recently and took bloods and that all looked ok. She's not lost any more weight in last couple weeks which is good. She said mum had put a LB on but they weren't sure how that had happened cos she wasn't eating much at all. She said she was going to ring home back and talk about things mum liked and ask about how and where mum ate and talk about what I'd said. I felt pretty useless as I didn't know why mum wasn't eating or what to suggest to get her to help.
I wish I knew what was stopping mum eating and could do something to help her. I think that's probably why she stumbled and fell today because she'll be wobbly if not eating. I don't know why mum got up and decided to take plate and walk off today, maybe she was annoyed or fed up with them trying to encourage her to eat. Poor mum I wish I could help her.
 

Lone Wolf

Registered User
Sep 20, 2020
57
Can you rule out any mouth problems with teeth, gums or an infection such as oral thrush? If any suspicion of teeth or gum problems, ask GP for an urgent referral to the NHS domicilliary dental service.
 

Bikerbeth

Registered User
Feb 11, 2019
1,706
Bedford
Sorry to hear that your Mum had a fall but glad that she was not injured. It must be a real worry for you that your Mum is not eating but it is good that people are taking it seriously. The dietician does seem to be proactive in trying to find out why your Mum is not eating and coming up with ideas to try and get your Mum eating. For now it seems that your goody bags are keeping it a bit stable.
I guess it takes time for the staff to know your Mum likes ‘flat’ cola.
I think Lone Wolf’s suggestion is also a good one as you mention your Mum has had problems with her teeth. I do wonder if your Mum is saying her teeth are ok as ‘she doesn’t want a fuss’
Lots of hugs to you. Are you visiting this weekend?
 

annielou

Registered User
Sep 27, 2019
1,766
Yorkshire
Thanks @Lone Wolf @Bikerbeth xx
I've mentioned mums teeth had been rubbing to CH and they did ask mum and get her some bonjela just in case but she said they weren't hurting. I asked her if they were rubbing and hurting too when I visited through the door and she said no. Mum could just be saying that cos doesn't want a fuss, or if not hurting at that moment she answers she says no but then they could hurt later when eating but she forgets in between. I'm not sure if they are or not as can't go in and look in her mouth or watch her, but she was eating a chewy chocolate last week when we turned up. She said she was going to throw it away cos was fed up of chewing it but didn't say her teeth hurt. It looked like a chocolate covered toffee bar and mum's never been a toffee fan she always says you're chewing too long. I did ask mum Is it hurting to chew and she said no. I hope they figure something out and she starts eating soon.
Got another visit booked this morning at the door. My sister rang to see how mum was earlier this week and she mentioned mum was distracted and wasn't as settled last week when we visited and said we wondered if it was cos mum standing and she asked if mum could have a chair again this week to see if that helped her settle for a bit longer. The home have said they are going to be sorting out an indoor visiting booth soon for the winter months. Not sure when it will be ready yet but it might be better than standing at the entrance door, but we'll still be separated by glass so not ideal, but better than nothing.
 

Starting on a journey

Registered User
Jul 9, 2019
494
Oh my, I guess it’s a mixture of things with your mum. She probably has got into a habit of not eating much, maybe her teeth rub a little bit and the food is not to her taste. It’s probably good food but not what she likes. Would it be worth putting a quiche that she liked in her goody bag and asking home to serve it up to see if she likes it?
If mum is eating her treats then maybe it’s not an appetite thing. Maybe she’s near people with big appetites whose meals overwhelm her or maybe they dribble and that turns her off. Maybe it’s the paper plate? Lots of maybes to investigate.

My mum is slowly dropping in weight despite me feeding her lots of beige food and cream. Maybe it’s part of the disease.?

Hopefully the new efforts by government will provide results and you will get an inside visit soon to see if with your knowledge and experience of mum and her needs, you can help
 

anxious annie

Registered User
Jan 2, 2019
590
Sorry to hear your mum had a fall@annielou but glad she seems ok. It's hard when your mum won't eat, just keep tempting her with your treats. My mum was found to have "thrush" in her mouth, it's worth checking out xx
 

annielou

Registered User
Sep 27, 2019
1,766
Yorkshire
Not had a good visit again today, mum looked so sad and tired and old and frail, it was heart breaking to see her looking so low. I cried a bit as we were leaving and a lot afterwards. I just want to make things better for her but can't and I feel so bad for her being there and feeling so sad and alone.
Mum was sat in corridor when we arrived and so was the lady who walks up and down corridor a lot. Carer told mum we were here and they came over to door and sat in chair carer had put there for her and carer said she'd leave us to it and asked the walking lady if she wanted to go with her so they both went off down corridor. I'm glad they had a chair for her today as mum looked shattered like she wouldn't have been able to stand for long and I think if she'd been standing again today she'd have left pretty quickly, even sat down we only managed about 15 minutes. I didn't recognise mums t-shirt at first today and wondered if it was someone elses but then I realised it's her pyjama t-shirt. Mum mustn't have realised and thought it was a day t-shirt, it was a plain v-neck t-shirt, it has nothing night time on it so easy done I suppose. I didn't say anything as I didn't want to upset her as she looked so sad today. Mum asked if we were coming in and I said we couldn't but we could chat to her here, she was talking quiet so I asked her to speak up a bit but mum said everybody would hear, I said others had gone but mum said they'll still hear they can hear everything here. I asked how she was and was she ok after her fall yesterday. Mum said No she was awful, she was fed up and she could cry. She said something about being fed up there and not liking it and It's costing me a blooming fortune. I said It doesn't cost you anything mum you don't have to pay for anything. Mum said Well they keep asking me for some and me being soft I give it them. Don't know what she was on about there but think she was mixing something up. Mum said Well I'm hoping to go home soon cos I've had enough in here anyway. I'm sick of it.
During visit mum kept sitting back in chair slumped and leaning against radiator shelf next to chair and closing her eyes. She looked shattered which isn't surprising I suppose if she's barely eating. After first five minutes or so mum starting saying every so often I'll let you go, or I'm going to go cos I feel a bit yuck or a bit sick. I said she probably felt sick cos she wasn't eating and asked her to try eating then she'd feel better and build her strength up so she wasn't so wobbly and fall. Mum said It's not easy. I asked her why she wasn't eating, what was wrong and mum said she couldn't be bothered, she didn't want to do owt, she didn't want to eat. She said it's not horrible food really just bland and I don't want it. She also said later on when talked about feeling sick and not eating again that they were always going on at her too trying to get her to eat but she doesn't want to. I said it's because they care like I do and want her to eat and feel better. Mum said something that I didn't catch all of but it was something about someone bringing her some chips in to eat with her and telling her not to tell the others and mum said she'd told her they'd be able to smell em, mum did smile when she told us that. I asked if she ate some chips but mum didn't answer she just said I'll be better when I get home.
She asked if she was coming home with us and then asked why she was there. I told her the Drs still wanted to keep an eye on her. Mum said she wasn't in hospital and so I said no but she'd come there after hospital so they could keep an eye on her. Mum said she was coming home soon she hoped in a couple of weeks. I told her she needed to build her strength up. I said I've brought you another goody bag. Mum said You don't have to keep bringing me things. I said I'm trying to fatten you up so that when we can come see you properly I can give you a big hug and not break you. I said There's some more sweets biscuits and crisps in and some magazines. Mum said Thanks but I might not bother I don't want to do owt. I said I put you a new puzzle book and pen in too in case yours runs out after all those puzzles and she did smile at that.
She rested her head on her hand on shelf and shut her eyes for a minute, she looked so tired and thin today. I showed her a few photos of her great grandson on my phone and she sat forward to look at them and smiled for a couple of minutes and mum said She sent me some last week, meaning the photos I'd printed and took her last week so she'd remembered she had them . We talked about how cute he was and said how after lock down maybe sis can bring him down for a visit. We chatted a few minutes about lockdown and not being able to go anywhere. Mum said it was terrible cos nobody could do anything and all these places are shut and people losing their jobs and not being able to see people. I said Hopefully soon it'll start slowing down and things will start opening again and we can start seeing people properly . You need to start eating again and put some weight back on cos when the shops open and we can start going out again you'll need to be nice and strong to walk round all the shops and carry all the bags full of stuff we'll buy and she smiled at that. She asked if her mum was ok so I just said Yeah she is and then she asked if my sister was ok and if I'd seen her. I said I'd not seen her cos we couldn't but we text and she's ok. I told mum sis had said she loved her lots and wanted her to fatten up a bit so she could give her a big hug when she can come visit and mum smiled at that.
We managed a few odd minutes of conversation here and there and the odd small smile but they didn't last long, mum looked so tired and fed up. She said sorry she wasn't chatty but she could cry and she was fed up. The walking lady came past a couple of times and came up to mums chair and said we're ok and are you ok and mum said yes we're ok . Mum was gentle with her but when she walked away second time mum said she drives me mad. They all do they're all same people here. There's one row of folk and then there's another row of folk and they're all the same. I wasn't sure what she meant exactly but think she was bored and fed up. Then mum said she was going to go again cos she felt a bit yuck a bit sick and rubbed her tummy. I said it was probably cos she was hungry and not eating so would she try eat something. Mum said I'm skinny look I've lost my belly and showed us her flat tummy, she said look and put her fingers round her wrist which had lots of space and mum hasn't got big hands and then mum said and I'm covered in bruises. I asked her again to try eat and said if she ate she'd get bit stronger and not be as wobbly on her feet and wouldn't bump herself or fall. Mum said she didn't want to, she couldn't be bothered she just wanted to cry. I told her I was sorry she was sad and I loved her lots and wanted her to feel better. She noticed a band she's had on her wrist a few weeks then and said she didn't know why she had it on. I said throw it in bin then and mum said I've got used to it. She had it round her wrist when I had first window visit and she said it had been wrapped round something and she'd popped it on her wrist but couldn't remember what it was from. I thought she'd used it as a hair bobble first time I saw it as she used to put her hair in ponytail before for a while and then put bobble round her wrist. She had it on last week too, dunno what it is or what she does with it but seems like she forgets it's there and why but just leaves it there.
Mum said she was going to go again then and said she wanted a cup of tea to see if it stopped her feeling yuk. I said have a biscuit with it that might help and mum said Oh aye I will. She got up to go and said bye so I asked her to ask someone to buzz us out. I told her I loved her lots and would see her next week and she said ok. Then she asked what did she have to do with the chair and I told her leave it they'd move it for her. Mum said Ok then said bye and went to walk away but turned back round lookign a bit lost and said What have I got to do? I said Ask someone to let us out of gate. Mum said Ok, had a look round then said I'll go down here, I shouted love you lots and we said bye again as last week mum didn't come back when carer came to let us out. I was crying a bit as she left cos it was just so sad seeing her looking so sad and thin and unsure. A minute later mum came back with carer and walking lady and hubby passed mums goody bag in to carer while I shouted bye to mum, told her see you next week and love you lots, mum said bye to us then asked carer if bag was for her. I didn't hear what carer said but think it was something about wiping it for her first and then she told us she'd buzz us out and so we said bye again and waved and mum did a little wave back and so did the walking lady.
We'd only been there about 15 minutes but mum was struggling to chat and I thought she might go get a drink and a biscuit if we left so I hope she did though it wasn't long till lunch so they may not give her anything till then in hope she had lunch which from what mum said and way she seemed is unlikely. I hated leaving her there so unhappy. I hate dementia and I hate covid and I hate feeling useless to help mum
 

anxious annie

Registered User
Jan 2, 2019
590
Aww, I really feel for you @annielou. It's horrible to see our loved ones looking so down, and we feel helpless.
You are doing what you can, visiting and taking the treats your mum loves, and her puzzles to do.
What we all need is for the quick turnaround tests to work and be given to care homes. All our loved ones will feel better if we could give them a hug, and be with them to hold hands, do activities they enjoy etc.
Let us hope we can do this very soon.
Sending hugs xx
 

Palerider

Registered User
Aug 9, 2015
2,127
North West
Aww, I really feel for you @annielou. It's horrible to see our loved ones looking so down, and we feel helpless.
You are doing what you can, visiting and taking the treats your mum loves, and her puzzles to do.
What we all need is for the quick turnaround tests to work and be given to care homes. All our loved ones will feel better if we could give them a hug, and be with them to hold hands, do activities they enjoy etc.
Let us hope we can do this very soon.
Sending hugs xx
I sincerely hope so @anxious annie

@annielou please don't despair......I get it all of what you have posted about over the last several months and I can only say me too. I wouldn't have got this far without TP. I see your unconditional love for your mum and it strikes with me whole heartedly. Your mum is ok @annielou there is nothing you have said that is a huge worry or that any of us have not gone through before, but I do empathise, hopefully soon we will be able to enter care homes with keyworker status and do what we do best -care for our loved ones, join me and us in that hope ;) xx
 

Sarasa

Registered User
Apr 13, 2018
2,011
Sorry it wasn't a great visit @annielou and this whole covid thing makes it so much harder as in 'normal' times you'd be giving her a hug telling her how lovely her room is etc etc. Your mum is in the best place possible for her, you know if she was home there would be a crisis within about five minutes and I doubt she'd be any happier.
A tip I've seen often on TP is to be as upbeat as possible when you visit. If your mum sees that you are sad too it's going to make her sad, Just be as jolly as you can be. Tricky I know when you don't feel like it, but if your mum hears and sees you being upbeat, hopefully it will be catching.
 

Palerider

Registered User
Aug 9, 2015
2,127
North West
@Sarasa thank you...I was always the same. When I got to the care home my coat of worry and anguish got hung up at the door and after that I was just there for mum. I always made sure I smiled was jolly and above all else enabled mum to make a positive connection because pwd only know how they feel and that makes it hard work for those of us who visit not less because we have the weight of the world on our shoulders. Leave that coat at the door and pick it up on the way out, I guess thats actually professional advice as well ...ahem ;)
 

Wildflowerlady

Registered User
Sep 30, 2019
263
Hi @annielou, have read your post and so sorry to read your mum had a fall. You are right I hate Dementia and Covid too. I so wish I could offer more words of comfort but as yet have not been in your shoes.so to speak with CH visits etc.
We will be in similar circumstances soon and really only waiting for confirmation that dad will be going into CH probably within next few days. Carers into my dads home are now on their last 10 days of providing his care and looks like they won't extend their time although I do understand as dad is getting worse day by day now and its making their job with him impossible at times.
My dads appetite is quite poor too and has got worse in the last 4 weeks. Dad will eat breakfast but after that he won't eat any meals but usually eats trifle and a glass of jersey milk at lunchtime and often again at tea visit or just a cake. Dad won't eat any sandwiches or quiche, Scotch eggs I've tried taking all of these to his home and they end up out of date and in the bin, occasionally he might eat a small sausage roll . Dad can hide bits of cake in his tissue box or drawer in his coffee table so sometimes he is not even eating those and carers are on limited time so don't realise he's hiding them. The carers sometimes use up their time waiting for dad to agree to some personnel care as he needs pads and catheter checking and have to pop into another room and try again in hope he will agree. I know dad needs to go into a CH urgently but can feel all your emotions and trepidation too with how your mum cannot understand what is happening and my dad will be the same. Its breaking my heart and struggling to sleep just waiting for that call, I don't even know yet where dad will be offered a CH but know where there is a vacancy. It looks like it will be a good place although haven't been able to visit yet but have spoken with a lady that has been calling to ask how things with dad are going. LA need to help with the funding but this was one of two homes that ASC said about last month and they do accept LA payments. . Its such a big change not only for the PWD but for those that are so used to seeing them so regularly. I understand how upsetting it must be for you and hope that CH will sort out visiting in a better way for everyone. Sending a hug and hoping your next visit to see your mum is better. 🤗
 
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Bikerbeth

Registered User
Feb 11, 2019
1,706
Bedford
So sorry to hear you visit was not good. My Mum also took to wearing her sleep T-shirt during the name as apart from the label it was not obviously part of her PJ’s.
Not quite the same but Mum complains that she is always being ‘watched’ - I wondered if it was the same for your Mum when she says they are always listening. At least at the moment I just say to Mum they are watching you in nice way in case you have a fall because of your fainting spells.
I wish I had something constructive to say as I am sure it is ‘playing’ on your mind all the time.
🤗🤗🤗🤗
 

Bikerbeth

Registered User
Feb 11, 2019
1,706
Bedford
I hope too @Wildflowerlady that you receive confirmation of a Care Home for your Dad soon. Yes it is difficult but I think once it is determined it at least takes you out of the unknown limbo land. Although my Mum has not settled well when I used to visit pre covid I know others on the floor were. One amazing event is one of the ladies who rarely spoke, started painting With her daughter on zoom during lockdown and although she still communicates little her painting are amazing.
 

annielou

Registered User
Sep 27, 2019
1,766
Yorkshire
Thank you all for your replies x I really do appreciate you writing them when you have your own worries and problems x
I do try to not let mum see I'm upset, my eyes leaked a bit at the end of visit yesterday but it was when mum had gone to find someone to let us out and I wiped them before they came back. I was trying to be upbeat, but when mum complained or said she didn't feel well it didn't feel right to be jolly then so I tried to sound sympathetic but not look sad. We did talk about her not eating but I was trying to encourage her by saying we wanted her to fatten up so we could give her a hug and she'd need her strength for shopping when we can go out. Same with talking about not going out and virus, it was mainly to explain why we couldn't be together and say she wasn't missing out on much cos there's nowhere to go but we will when we can and hopefully it'll be soon, (although it feels like it won't be soon but I didn't say that to mum, I made it sound like would be really soon). Mum didn't look stressed or any sadder while we were talking about that really. It doesn't feel right to grin and be jolly when someone is telling you they feel so bad they could cry and they don't want to do owt but we did try to be sympathetic without showing we were sad, we still smiled but gentler and not as big and I tried to say something positive or explain with a smile. Hubby and I smiled a lot and tried to keep our voices bright and tried to talk about happier things but it wasn't working yesterday, but I'll try even harder next week.
It's awful seeing mum so sad, I feel so guilty because she doesn't want to be in the care home and we're not with her. I try to tell myself that she wasn't happy at home either sometimes and didn't often think I'd been with her. I try to tell myself that she was getting really confused and agitated at home before she went in hospital and was sad and didn't want to do things she usually enjoyed as much the last week or so before going in hospital either, but it doesn't really help much to be honest, not me and definitely not my mum. It maybe helps me a bit in the feeling guilty for putting her there stakes, but it doesn't help the feeling guilty I can't help her or the overwhelming sadness that she is so sad.
I don't know why mum first stopped eating, I think maybe her teeth hurt a bit and she didn't like the hospital food or eating on her own may have been the start of it, but I think now she just doesn't want to eat cos she's sad and confused and fed up and doesn't see the point and to be honest if I was her I'd feel the same.
 

canary

Registered User
Feb 25, 2014
13,907
South coast
You are bound to get some good visits and some not so good ones - its par for the course.
I seem to remember that your mum was taking some antidepressants before she moved to the care home. Perhaps you could check that she is still being prescribed them. Sometimes hospitals stop things like that
 

annielou

Registered User
Sep 27, 2019
1,766
Yorkshire
Thanks @canary x
Mum was on sertraline and had just started memantine day she went in hospital though they were mainly for her anxiety, agitation and aggression rather than depression although when MC prescribed the first dose of sertraline they also thought it might help lift her mood as mum was quite unmotivated and they thought a bit down too.
We found out at mums DST meeting that she is no longer on her galantamine, the CH said mum wasn't on it when she came to them so hospital must have stopped that but she was still having sertraline and memantine. Mum is still on both those now and CH had memantine increased a while ago as they were concerned mums mood was low then. I think mum is on max dose of both now. The nurse told my sister on phone this morning if mums low mood continues they're going to contact GP again, not sure what else they can give her.
 

DianeW

Registered User
Sep 10, 2013
786
Lytham St Annes
I think your only seeing a very short snapshot of your Mum, and that some parts of the day she will likely be chirpier.....so please don’t think she is always as you saw her.

I think to be honest though this is really how she is going to be now, in fact she would be much much worse at home, at least there she has many carers and company plus is kept safe.

I do think if visiting was aloud properly you may be able to cajole her in to eating by eating with her, but you couldn’t possibly be there for every meal time.

Maybe a GP can adjust her meds to lift her a little, the sad thing is your Mum doesn’t understand why she has to be there, or why you can’t go in etc.

I think she is fed up, but remember it’s the disease and it’s effect on her life now that’s causing her to feel fed up, the fact that she can’t live as she believes she can is making her fed up....

Nobody can take this away from her, all you can do is take each visit as it comes, try to be upbeat and chatty etc, and be assured she is in a lovely place and is cared for really well....I think that’s the best you can hope for.

It’s natural to feel a little guilt but please don’t forget what happened prior to her admission to hospital, in your heart you must know you couldn’t keep her safe at home, so you really have nothing to feel any guilt about......you really don’t.

Take care x
 

Bikerbeth

Registered User
Feb 11, 2019
1,706
Bedford
I think she is fed up, but remember it’s the disease and it’s effect on her life now that’s causing her to feel fed up, the fact that she can’t live as she believes she can is making her fed up....

Nobody can take this away from her, all you can do is take each visit as it comes, try to be upbeat and chatty etc, and be assured she is in a lovely place and is cared for really well....I think that’s the best you can hope for.

Thank you. I need to remember that with regards to my Mum
 

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