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

Sarasa

Registered User
Apr 13, 2018
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Hope your sister does come to help, the more hands the better. When I sorted mum's place it was mainly me, with a bit of help from my husband, sister in law and nephew. As @Bikerbeth says it does feel strange, but you are doing absolute best for your mother. Maybe ask the home how much room there is for ornaments etc. The home already had some in mum's room to make it look homely, so I just too a few. I'm not sure that more recognised them, but they made the room look nice.
As someone who hates using phones too I know how difficult it is to steel yourself to make a call, but it sounds like it went well. Does the manager have an email address as you could just drop him/her a line about your concerns over your mother's lip. Glad she was sitting down and eating. It sounds like she is really settling. It's lovely to hear that she isn't mixing you up anymore.
 

anxious annie

Registered User
Jan 2, 2019
740
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It's such a difficult thing to do, going through someone's possessions and deciding what you think they would like to keep. It's good you have your sister to ask about these things too. Yes you are right, the restrictions do allow someone to travel and stay over to facilitate a house move. Could you ask the care home to send you photos of your mum's room so you have an idea of what your mum could keep in her room to personalise it?
Well done for making the phone call, I think care homes must be used to speaking to "teary family members", my mum's home are always lovely when this happens
 

imthedaughter

Registered User
Apr 3, 2019
572
0
Definitely ask if you can have a picture of her room, so you can work out if you can take anything in. Dad took his piano and a chair (from a set which had belonged to his parents) with him and that's in his room. The piano is in the conservatory. There's no room for anything else. He had a couple of knick-knacks as well which I put in his room.

Unfortunately he doesn't really know they are his. He says 'Oh there's a piano round here somewhere' and I say yes dad, that's your piano, you scratched a 'p' for piano into it with a compass when you were little, and he roars with laughter and tells me he got into terrible trouble for that! But he can still play! Incredible isn't it?!

I guess I got lucky because Dad, due to his dementia, literally abandoned 95% of his stuff, including all our family photos, his memory boxes with his dad's war stuff, his cups for car racing, his record collection, and all the other stuff I would have happily kept, as well as tons (literally) of stuff I would have chucked out and it ended up being cleared by house clearance which cost thousands and thousands of pounds. Such a waste, but at the time we didn't know he was poorly. When I left home for university I didn't have a great relationship with either of my parents as they were in the middle of a very messy divorce so I took a couple of photo albums, mostly my baby photos and things like that, so at least I saved some things. And I have my grandad's signet ring which he always wore, even in WW1 with his kilt floating all around him like a tutu in the flooded trenches. But that's it. I'm a bit sentimental so in some ways at least the temptation to have stored all that stuff is gone. From my mum's side I have my great gran's beautiful sewing machine but at least that's useful, I still use it even though it's over a hundred years old now!

Anyway I digress. Hope mum is still eating today and your next visit goes well.
 

annielou

Registered User
Sep 27, 2019
1,911
0
Yorkshire
Thanks @Bikerbeth @Sarasa @anxious annie @imthedaughter xxxx
My sister did say something about mums room a few weeks ago when she was on phone with Deputy Manager and he said he'd send us photo of it but we've not had any yet. From the sound of it I think mum keeps things hidden away and is quite possessive about her things so not sure she would put any ornaments out anyway, or that she has the 2 wedding photos I sent in with her out on display either. If we ever talked about CH before she went in mum always said they lose stuff and just give you anyones clothes to wear so I think she keeps everything put away.
They couldn't get her to unpack for first few weeks, she kept everything in her case and bags. Because of covid I couldn't go in and unpack and set up her room for her which I think would have helped us both. Blooming covid has made lots of things harder for all of us hasn't it. To be honest I'm not sure mum would get much out of having her own ornaments anyway, apart from making room look pretty maybe, she doesn't really have any with any special significance. When she talked about home and her belongings in last month or so before she went in to the CH it was about furniture she had years ago when lived with my dad and me and my sister were teenagers which has all been replaced over the years.
I've not been over to mums for couple of days as not much I can do now till my sister comes, as what's left to sort now is things she wants to look through together and I can't do much more cleaning until these things are moved and the sofas picked up next week and bags taken to charity shop and dumpit when sorted.
Isn't it funny how people with dementia can still play instruments and remember songs, yet forget so much else. That's a lovely memory you and your dad have about the P @imthedaughter 🤗 Shame about all the other treasures your dad got rid of before, the sewing machine sounds a lovely thing though.
My mum always wanted to learn piano, when she was young a cousin of hers had piano lessons but my nannan couldn't afford mum lessons. Many years ago hubby bought me a light up keyboard for fun and mum loved it and bought herself one and for a while she tried to learn to play it properly. She hasn't played it for years, though and it's been down side of her wardrobe for ages. I asked my sister if she or her kids wanted it which they didn't, so even though I have one myself I'm going to keep it. I don't know why, I haven't played mine for ages either until last week when after seeing mums at her house hubby decided to get my keyboard out and we had a go and I'm even more rubbish than I used to be, but I'm keeping mums and mine for now anyway.
 

annielou

Registered User
Sep 27, 2019
1,911
0
Yorkshire
Another not great visit with mum this week. Last week there was a facebook post by CH saying the inside visiting booth area was almost finished and they'd be using it next week, but there was no mention when I rang to book visit on Tuesday of using it and there had been nothing on facebook this week when I booked my visit so it still mustn't be ready yet so today was still a visit through closed entrance door.
When we walked up to door the nurse was bringing a chair to put by door and she said We didn't know you were coming we're not ready yet, she's not having a good day she won't have anything to eat and she won't get dressed. I was a bit surprised as I'd booked it tuesday but didn't get chance to say before she went to room just off entrance. I heard her ask mum if she was coming and say You've got a visitor your Andrea is here. I could see her helping mum up which looked a real struggle for mum and they walked over and mum sat on chair. Mum looked awful, she was wearing a pair of pyjama bottoms and a nightshirt, neither of which were hers, she looked like she would fall down if not held up. She looked like a skeleton with loose skin and looked absolutely exhausted, like she'd had enough of life.
Mum looked like she couldn't even hold herself upright in the chair at first, she sort of slid to side resting her head on her hand on arm of chair. It took a lot not to cry at the sight of her but somehow I did manage not to cry today. Mum said she felt awful she just wanted to lie down, she felt yuck. Said she didn't have energy to get dressed when I asked her about it. She said we should go home cos she was no company and she'd see us another day. I told her we'd come to see her and why didn't we try chatting for a bit see if it cheered her up a bit. Mum said Ok but said she felt terrible, I tried saying she would feel terrible cos she didn't eat and would she try eat a bit of something for me. She said she couldn't eat she felt too horrible she just wanted to lie down she'd had enough today. I told her we'd brought her a prawn sandwich and she pulled a face at it which is unusual. I saidYou like prawns and Mum said I don't think I like owt. She said her mouth felt horrible so I suggested she have a drink and told her we'd brought her some coke and she said Oh good. A carer came by then and asked if we wanted to hand mums goody bag in. We said we'd brought mum a sandwich and some coke and mum might want some so she got it for mum. Mum had a drink but it was fizzy so mum pulled a face which we laughed at, carer said something about it being a funny face so mum did it again and we all laughed again. Mum said she didn't want it cos it was too fizzy so I suggested she put it on shelf and let it go bit flatter and the carer put it there for her and said we'll leave top off for a bit eh and mum agreed. Then she said she'd take mums things and put them away for her and put the sandwich in the fridge. When she went mum said she was lovely and I said They all seem nice, Mum said They are, they don't leave me on my own and they're always trying to get me to eat and asking if I'm ok. I said Thats nice its cos they care about you like we do. Mum smiled at that.
Mum did chat a bit at times and cheer up and sit up a little bit but she kept getting tired and lolling to side again. She said a few times she was no company and we could go but I said we'd come to see her and we were fine. Mum asked a couple of times if we'd come tomorrow, or would we come again so I said I don't think I can come tomorrow but I'll keep coming every week cos I love to see you, which did make her smile. She talked about not feeling good and being skinny a few times. I asked her to try eat for me, just start with a little bit at a time and build up and said she'd feel better if she ate. Mum pointed to a few small bruises on her arm near her wrist and told us she keeps getting bruises I could see a big one under top of her other arm too. I told her she needed to fatten up and get some padding so she wouldn't bruise. She did laugh when I was saying she needed to fatten up like me and was jiggling my leg about saying look how big my leg is with all my padding I'd bounce if I fall. One time when talking about not eating mum asked me when she last ate and I said I didn't know, mum said she didn't either. A couple of times mum agreed to try a bit to eat after we went when I suggested she could try something and see if she felt better enough to get dressed, though she also pulled a face at the thought a few times too. Once mum said she didn't like the food it was horrible so I told her to eat the biscuits and crisps I brought instead. When I told her I'd brought her some magazines and a new code book she said thanks and smiled. I suggested she could do some puzzles this afternoon and she said Oh yeah I can.
Instead of the walking lady today there was a man walking up and down who kept coming and standing right behind the glass at the back of mum, I've seen him walk by and stop and look at us a couple of times before, he doesn't say anything or smile or react when we smile or say hello to him, he just stands and stares a bit then walks off. The first time he did it today was early on in visit, mum noticed him and said I don't know who he is, I can't be doing with that today. As he walked away mum said He can burger off (but proper word). A bit later he walked past with a cup of tea and biscuit and stood behind mum till he finished his biscuit but luckily that time and next time I kept mum talking and she didn't notice. But someone was squealing and shouting in the room to the side a bit later on and mum said Oh no not again, it's never quiet I can't be bothered with it all today I just want to lie down quiet but it's not quiet there's always someone going on. She kept leaning on her hand with her head and closing her eyes and sighing and looked shattered and fed up.
We did manage a couple of little bits of chat, mum asked a couple of times what we'd been up to, I couldn't say I'd been clearing her house out so I said things I've done previous weeks, like going on my treadmill and colouring and we talked about those for a minute or two. Mum asked if we were ok, had we seen hubbys mum and dad, had we seen my sister, were they ok and we talked for minute about not being able to visit but we're phoning and texting and they were all ok. She asked again a bit later too so I just answered as if first time. We also had a couple of laughs about a few little things including me crouching down to be at her level and I joked again about being like hunchback of notre dame and shouted esmeralda which made mum laugh. Mum also asked a couple of times about her mum, if I'd seen her, so I just said I'd not seen her but she was ok which mum seemed fine with.
After about 25 minutes mum said we could go cos she was getting tired now, I didn't want mum to go looking for a carer to let us out like usual as she looked so weak today so I asked her to wait a bit till a carer came by then we'd ask them to let us out and mum agreed cos she said she didn't know if she could manage to get up on her own. We chatted a bit more and then mum said she wanted a cup of tea cos she was dry. I suggested again she tried a biscuit with it and mum agreed. The nurse came then and told us they'd another visit booked at 1/4 to, it was 25 to 12 by this time and mum was tired so I said That's ok mums getting tired now anyway so we'll go and mum says she fancies a cup of tea and will try a biscuit with it. Nurse said something to mum about her not eating and trying something then she went away. We thought she'd just gone for a couple of minutes to let us say bye and expected her to come back and buzz us out so we were gone before next visitor arrived. Mum was a bit confused why we hadn't left but I said Nurse will be back to let us out soon she's probably gone so we can say bye. We said bye and that we loved each other and we'd see mum next week but nurse didn't come back, so we chatted a few more minutes while we waited.
Mums lip looked a little better today though still sore and she'd said earlier on in visit when I mentioned it that someone had been telling her to put lipsyl on. While we were waiting to go mum licked her lips and said Ooh I keep forgetting not to do that. I said Keep putting your lipsyl on cos it's looking better and we joked about putting loads on so even if she licked her lips she'd just slip right off and not hurt it. Mum laughed then said she'd need to find it again cos she keeps forgetting where it is. I'd took another with me in my coat pocket just in case, so I said I'll leave you another then you can have a spare. Mum laughed and said I can put one in each pocket and I said Yeah you can be like quick draw mcgraw and draw yer lipsyl, I did a cowboy drawing two guns type thing which made mum laugh. The gate buzzer went then and carer came to open gate for them and I asked her if I could hand in another lipsyl for mum and told her it was a spare in case mum can't find the other. The next visitor came and waited at bottom of steps so we said bye again, told mum we loved her lots and we'd see her next week and went down to gate thinking carer would buzz us out. After a minute we could hear visitor shouting hello to her relative but no one had buzzed gate to let us out so hubby went back to bottom of steps and waved at one of the carers and gestured pressing the buzzer. So then they buzzed us out so we shouted thank you over intercom. Hubby said carer and mum had gone when he went back and it was some different carers with other resident so I think first carer must have taken mum and more carers had brought next resident and they'd missed buzzing us out.
I hope mum did have a drink and ate something today and I hope she got dressed and felt a bit brighter later but she really did look weak and shattered today and so thin it broke my heart to see her and to leave her.
 

Sarasa

Registered User
Apr 13, 2018
2,486
0
Sorry you’re mum wan’t looking well, but she sounds pretty settled in the home and the fact she knows who you are shows how much less stressed she is.
I know you don’t like phoning, but do you have the email address of the manager and or lead nurse? I think it would be worth putting your mind at rest by asking how they are addressing your mum’s not wanting to eat. It does sound like she probably needs to have a carer sitting with her at least for a while.
Hoping you are now on the last straight with the house clearing and that your sister came to help.
 

annielou

Registered User
Sep 27, 2019
1,911
0
Yorkshire
Thanks @Sarasa x I've nto got anything like that, they never gave us it, or at least they didn't me, I think my sister emailed this is me over before mum went into CH but not sure if they use email much as don't think ever been mentioned since, I'll ask my sister.
Mum is calmer but at times it feels more like she's calmer cos she's lost her fight. I try to believe she is settling there but I think her not eating is a sign she's upset as mum gets like that when upset. During past year mum had talked about not wanting to be here and letting her just die a few times and I do wonder if that's part of why she's not eating at times too.
My sister came yesterday and we went through quite a lot of the things still left to decide what to do with and we should get through rest today before they go home. Sis is visiting mum this afternoon before she leaves so hope mums feeling brighter than yesterday 🤞
 

anxious annie

Registered User
Jan 2, 2019
740
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Sending you a big hug @annielou , it's so hard to see your mum looking so sad and loosing her fight. I do hope your sister has a better visit today, and you finish your sorting too. My mum has seemed a bit deflated this weekend on FaceTime, I wonder if the miserable weather is affecting their mood too?
I would definitely find out the email address as I am sure they will correspond in this way. Then you have a paler trail of queries/ concerns you have raised. It gives the manager a reminder too, to pass on to all staff as points made on the phone are more easily forgotten. It helps to get your thoughts together as well. Have you asked about the Lateral Flow tests as hopefully with a negative test, ppe etc you will be able to go inside the home and give your mum a hug, hold her hand etc. I can't wait until I can do this with my mum. Sadly it won't be before Christmas as no tests delivered yet, but hopefully early next year xx
 

Susan11

Registered User
Nov 18, 2018
2,882
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Sending you a big hug @annielou , it's so hard to see your mum looking so sad and loosing her fight. I do hope your sister has a better visit today, and you finish your sorting too. My mum has seemed a bit deflated this weekend on FaceTime, I wonder if the miserable weather is affecting their mood too?
I would definitely find out the email address as I am sure they will correspond in this way. Then you have a paler trail of queries/ concerns you have raised. It gives the manager a reminder too, to pass on to all staff as points made on the phone are more easily forgotten. It helps to get your thoughts together as well. Have you asked about the Lateral Flow tests as hopefully with a negative test, ppe etc you will be able to go inside the home and give your mum a hug, hold her hand etc. I can't wait until I can do this with my mum. Sadly it won't be before Christmas as no tests delivered yet, but hopefully early next year xx
I think Mum's Care Home would have called the Dr or at least the District Nurse to look at Mum's lip under these circumstances. I think you should ask the CH to do the same. She might need something stronger that Lypsil. Anyway no harm will be done by getting a professional to check.
Susan
 

annielou

Registered User
Sep 27, 2019
1,911
0
Yorkshire
thanks @anxious annie @Susan11 xx
Will ask my sister if she has email address and if not ask CH if they use email. The staff all seem lovely people but they aren't very forthcoming with information of how things work, it's like they assume you'll know. I think most residents have been there a long time. Maybe it's just how things are round here as SS, and the hospital when mum was in were the same, even when you ask really direct questions info is very vague and a lot seems to be assumed you'll know.
Nothing has been said about tests or inside visiting at CH but then they still haven't opened the inside visiting booth yet, we're still standing outside shouting through glass panel next to entrance door at moment. The CH only holds about 30 odd residents so think we'll be pretty low down list for tests, plus nearby city who we share a mayor with has advised CHs in that area not to use tests as not sure good enough and mums CH tend to err on the very cautious with visiting so have a feeling they won't be too keen on using them.
My sister visited yesterday afternoon and said mum was dressed and seemed alright, she managed the half hour visit ok, though sis thought she didn't know who she was at first but then caught on. My sister said mums lip still looked red but wasn't as flaky as photo from last week, which it wasn't on saturday when I went so looks like still getting better.
Just as I was about to post this one of nurses from mums CH rang. She was letting me know she has called GP about mum not eating as they're really worried about her, she has telephone consultation booked for friday. We chatted a bit about mum, nurse said mum only had a bite of the prawn sandwich I took her on saturday and is barely eating anything now, not even the treats I take in. She said she has loads of things and they keep opening her things to try tempting her but they just stay there barely touched, if at all. She said the DR had said there wasn't much they could do other than for them to keep trying to tempt mum which they were. She said they're really worried about her as she is still losing weight and she said mum looked so different to when she went to them, she looked healthy then but now looked so thin and pale, she said she felt sorry for us it must be so upsetting for us when we saw her, it was for them. I said she looked terrible on saturday like she could barely hold herself up in chair and she agreed and said they were walking with her holding mum up whenever they saw her as worried mum'd fall like she has done lately cos she goes dizzy when she stands up. She said mum says she has no appetite and feels sick and horrible all the time and staff had caught mum with her fingers down her throat trying to make herself sick in hope it would make her feel better. Mum told me she felt sick and yuck too on saturday though she hadnt said she had tried making herself sick, which is really sad. It sounds like there is nothing in there to come out anyway but she must feel terrible to try as she hates being sick, poor mum.
We talked a bit about mum not eating when she has got upset or worried in past and tempting her with a bit at a time, though she'd not been this bad before. And we talked about mum not eating in hospital cos she didn't understand why there and didn't want to be there and and nurse said she wondered if there was some of that with her in CH, we wondered if it was mum having a bit of control or if it was mum giving up a bit too. Nurse said DR had asked if mum could be depressed and she'd said she could be, that some days mum was bright and chatty but others looked really sad and upset and quiet. She is hoping they can come up with something on friday but doesn't really know what else can try and neither do I. I said I keep hoping she will eat but don't know what is going to change and get her to start. Nurse was very nice and sounded concerned about mum, she said they will keep trying their best to tempt mum to eat. I just don't know what to do poor mum is wasting away bless her
 

anxious annie

Registered User
Jan 2, 2019
740
0
Sorry to hear your news @annielou , not being allowed in to visit just makes the worrying worse. Maybe the Dr will prescribe an anti sickness tablet, as sometimes if you're worried or stressed about a situation you can be affected physically. When mum was very down a few weeks ago she was put on antidepressants, not always the best to rely on , but it did lift her mood and she started to eat more.
Would the home do an individual risk assessment for your mum so that you could actually visit in her room and spend some time with her?
Sorry they won't use the Lateral Flow tests, the Government has said they are safe, used alongside good infection control measures, ppe, hand hygiene etc.
I fear mum's may say the same. At the moment they are saying they haven't received them and haven't done training etc so no hugs for Christmas.
Mum's is a small care home, so expect they may be back of the queue for a vaccine too.
Sometimes it seems as though it will never end xx
 

annielou

Registered User
Sep 27, 2019
1,911
0
Yorkshire
Thanks @anxious annie x hopefully GP can think of something on friday though not sure what. Mum is already on max sertraline and Memamtine and an omneprazole type tablet (can’t remember name) Nurse said DR had said not lot can do other than trying to convince her to eat but she is hoping they come up with something.
CH put a post on yesterday saying visiting booth be ready this week and think they’re going to contact families from today to explain how visiting will work. They haven’t said they won’t use tests yet but I have a feeling they may not, or at least it doesn’t look like they are yet.
Mums is a small home too so prob low down list for vaccines and tests like your mums 😕🤗
 

canary

Registered User
Feb 25, 2014
14,602
0
South coast
Has anyone checked your mum for oral thrush @annielou ?
Mum got oral thrush and she stopped eating because it made her feel so awful. Once it was sorted she started feeling better and started eating again.
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,217
0
High Peak
Unfortunately I think your mum's eating issues are probably a combination of all the things you discussed with the nurse. As she's already on various meds, I'm not sure what the GP will be able to do - my experience is that staff who are there with your mum every day will have much better ideas than the GP...

But, perhaps there's something else going on, as @canary says, so it's good that she's being checked. Your mum has been feeling sick/dizzy for a good while which you thought was due to taking her tablets at certain times/on an empty stomach, but there could be other reasons.

Food was always a major issue for my mum too and every time I saw her at the CH she was thinner. Everyone tried everything they could think of but it was really a losing battle. Much as with a child, you can't force someone to eat. As desperate as you feel - understandably - sometimes there just isn't anything you can do.

I always read your thread and often think about you, your sister and your mum, as I'm sure many people here do... Take care @annielou
 

annielou

Registered User
Sep 27, 2019
1,911
0
Yorkshire
Thanks @canary @Jaded'n'faded xx My sister said she's planning to ring either today or tomorrow so I'll ask her to ask CH if they've checked mum for oral thrush just in case, thanks for the suggestion.
Other than if it is that I really don't know what they can do to help mum, but I'm hoping something changes for the better soon 🤞 I have a bad feeling it won't, but still keep hoping. I feel such a useless🐮 and totally 💩 for not being able to help mum and even more 💩for not being able to keep mum at home and safe (I'm not being flippant using emoticons, they are instead of bad words and *)
Take care back to you too and same to everyone else 🤗🤗
 

anxious annie

Registered User
Jan 2, 2019
740
0
I think we all feel we've failed in not being able to keep our loved ones safe at home, but deep down we know that we did the best that we could and eventually there was no alternative. Things were not good for your mum at home @annielou , despite all your hard work to support your mum.
 

Sarasa

Registered User
Apr 13, 2018
2,486
0
@annielou you went above and beyond what anyone could do to keep your mum at home. I think if she was at home, not only would she probably not be eating, she'd be far more confused and distressed than she seems in the home. The checking for oral thrush seems a good thing to do. In the meantime try not to dwell on things too much. I always find I make things much worse if I do.
 

Woo2

Registered User
Apr 30, 2019
3,377
0
South East
@annielou ! You did over and beyond what anyone could have done for your lovely mum , it was Dementia that put her in the Ch not you, she does seem more settled being there , there seems to have been a trade off , she isn’t eating now as much but she is less anxious and unsettled . You would of had to have moved in again and do battle when mum didn’t recognise you and wanted you to leave , it wasn’t a sustainable situation . You have done your very best at all times for your mum , can only imagine how you feel but please do not blame yourself . Sending big hugs 🤗 🤗
 

canary

Registered User
Feb 25, 2014
14,602
0
South coast
I think your mum was already starting to not eat even when she was at home, but at least this way she is being looked after and now she is recognising you, which most of the time when she was at home, she didnt.
 

imthedaughter

Registered User
Apr 3, 2019
572
0
Gosh it's such an ever increasing spiral isn't it, probably feeling sick because she's not eaten but not remembering whether she's eaten or not but then not eating because she feels sick...

Hope they can test her for oral thrush and treat or rule that out. Will be thinking of you all.