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Woo2

Registered User
Apr 30, 2019
2,987
South East
I’m so glad mum was brighter and happier and you had a good visit . It must be extremely hard to see her so frail and thin , my mum had always had a very good appetite but she is eating a lot less , gone off things she would normally eat , it’s so very difficult and seems little we can do to encourage them to eat . Maybe when visiting resumes you could take some lunch in and sit and eat it with mum ? But you are doing all you can for now . 🤗
 

imthedaughter

Registered User
Apr 3, 2019
521
@annielou much to my surprise, I was told Dad's placement would be paid for by the local authority, long before I had even a financial assessment done. The assessment confirmed it and then I was sent contracts, and also payment info. Dad still gets his pension, but they invoice every four weeks and I have a standing order set up to pay the amount they requested. You may find it is the same.
 

annielou

Registered User
Sep 27, 2019
1,774
Yorkshire
Thanks @Woo2 @imthedaughter xx Under normal circumstances I think thats what I’d be doing. Flipping covid.
We’ve not got LPA for mum so not sure how we’ll arrange standing order if thats how they’re going to do it. Got a letter from finance dept of SS today which doesn’t say how it will work either so will email on monday and ask.
 

DianeW

Registered User
Sep 10, 2013
787
Lytham St Annes
I am glad you had a good visit ....I was thinking as above, could they not give you and hubby chairs or if not can you use your own folding chairs etc? Sorry but I’m not too sure of the set up or how much space is available...but it will feel more like a settled visit, with a little picnic......

Plus if you make sandwiches for all of you, and crisps and you can all be eating together, tell Mum you thought it would be nice to all have lunch together......she may eat them?

I so hope they can get her eating, because it sounds like she Is settling nicely and is fond of carers and resident....
 

canary

Registered User
Feb 25, 2014
13,946
South coast
We’ve not got LPA for mum so not sure how we’ll arrange standing order if thats how they’re going to do it.
I didnt have POA when mum went into a care home and I was told by SS that as mum had lost capacity, then someone would have to apply for Court of Protection deputyship. They said that if I didnt want to do it then SS would apply themselves.
 

Bikerbeth

Registered User
Feb 11, 2019
1,711
Bedford
So pleased that you had a happy visit. It makes all the difference. Also pleased that you have been able to take up your ‘crafting’ again by what you said.
It must be so hard regarding the eating when your Mum seems so settled in all other ways.
 

Sarasa

Registered User
Apr 13, 2018
2,035
So please the visit was good. Still a worry about the eating. I think the picnic idea is a good one, if you can manage it, as your mum might eat without thinking about it if you're all doing it. The home seems an excellent one, and really the best place for your mum Roll on vaccines being available, so you will be able to visit properly and really get involved in her new life.
 

annielou

Registered User
Sep 27, 2019
1,774
Yorkshire
Thanks @DianeW @canary @Bikerbeth @Sarasa xxxx
I know the CH staff try to encourage mum to eat but they like us are getting stuck on what to try next and worried about mum. If she keeps on not eating she'll just keep getting weaker, probably have more bumps and falls and feel yuck most of the time too but she just doesn't seem to either want to, or to make herself eat and none of us know why. We're running out of things to try, the picnic idea might work but think will have to wait till we can at least visit inside with screen to try it. At minute we stand outside entrance door at top of some steps, I was offered a fold up chair first visit but it's a bit of an awkward place to put chair so I said no. The top of steps where we stand is only a couple of feet deep, the door has vertical panels of wood and glass in strips with a glass panel a couple of feet wide either side, staff put mums chair in front of glass panel at one side of door and I stand in front of it on outside and hubby peers through glass slits in the door. The panel isn't that wide and there is a wall at the side and a fake topiary plant in front of it so space is a bit limited, it's ok for one person to stand in front of, or crouch in my case lol, but its not big enough for two or for a chair really. If put a chair there you'd need to put it side ways to get close to window and fit knees in without chair hanging over top step at back which would mean looking at mum at funny angle almost over shoulder so it's easier to stand/crouch.
The CH put on their facebook page a little while ago they are hoping to make an indoor visiting pod with screen so hopefully that won't be long and then at least we'll be inside and have chair and maybe I could try picnic then. We can't take home made food in so yesterdays sandwich was a supermarket pre pack one that could wipe box down. If I could hand sandwich in for mum and have one for me/hubby to eat at my side of screen I could try suggesting mum has hers now cos we've got one and are bit hungry and I thought we could eat together.
If it wasn't for covid I'd be able to go in and I could take us both a sandwich, or hot sausage roll, or bacon and cheese wrap that mum loved from greggs and eat with her. I could go a few times a week or even everyday if thought it would help instead of once a week standing looking through a pane of glass. Hopefully testing for visitors will come in soon and I'll be allowed inside although not sure if would be able to take food in and don't think I'd be allowed to eat with her as think have to have masks on and think visiting times may still be limited then but it would be slightly better than now I think.
The staff at the CH mum is in seem lovely from the few times when we have seen them and from pictures and videos on their facebook page they seem to be very caring, friendly and affectionate with residents which is really nice to see. Its unfortunate though that the rest of the residents are further on than mum and so she can't really interact with them much and mum doesn't join in activities now as they're a bit too simple and easy for her. Deputy Manager said they think the activities remind mum too much that she is in a CH which she doesn't like and doesn't understand why she is there as she's not like the others, more so in mums mind than in reality as mum thinks there is nothing wrong with her most of the time, but she really isn't as far along as the rest of the residents there. I agree with mum and the CH on that and feel bad about it as I think that is affecting mums mood and making her feel bored and low at times, but unfortunately we didn't have much choice to pick from. We were told to find an EMI care home and needed one that didn't require top ups and that could deal with mums challenging behaviour when she was trying to go home constantly and was agitated and aggressive when resisting help and care and this home was the only one in our town we could find.
By sounds of it I think in the first weeks mum was out of isolation she tried joining in and tried to chat with residents a bit but then realised they weren't the same as her and the activities aren't her thing. The crafts they do are a lot simpler and more basic than mum would manage. They listen to music a lot and staff sit and swing residents hands or try to dance with them while residents try to clap, or hum, or sing along. Mum is more able than that and while she doesn't mind a bit of music on occassionaly in background she's not really one to just sit and listen and sing along for long so I think she doesn't go in that lounge now. It's not the homes fault they have to cater to what most residents like and I'm sure they must try to involve mum at times and staff try chat with mum but they aren't able to offer one to one entertainment all the time. When mum gets bored she gets low in mood and it's hard to engage her to try doing anything then. I struggled when she was at home some days to get her to try to do things to entertain herself but sometimes if mum was bored I'd suggest we did things and she'd say no she couldn't be bothered but if I started colouring or something after a while sometimes mum would watch me and decide to do some herself and then enjoy it. I was hoping that if mum saw people in CH doing things it would encourage her to join in and do them she'd do same there but she isn't. I think this is what DM manager meant when he spoke a while ago about wondering if maybe it's not best place for mum and wishing there was a home with more people in at mums level so things might be more entertaining and stimulating for her. I think it was genuine caring about mums happiness and I wish the same too. I wish we'd picked a different home, though we really struggled to find one so not sure where else we could have picked, unless we can pay for it, I don't think there is an EMI home that mum could go to with a mix of different stage residents round here.
Hubby spoke to a neighbour the other day whose inlaw had dementia and went into a CH a couple of years ago. Hubby spoke about mums CH and they said they'd looked at the home mum went to when could look around pre covid and they also thought the residents were further on than their PWD so picked another EMI one that had more mix of people at different stages. Neighbour told hubby the name of home and we did see that home online when we looked for mum but it had top ups. We only saw 2 more that didn't require top ups that would take mum, one was being investigated by police after incriminating photos were online and we didn't want mum to go there anyway as a relative of hubby had been there a few years ago and his parents said when visiting it often smelt. The other one we saw didn't have rooms with own toilets which as mum has explosive diarohea at times we thought would be really helpful if she had loo close by in night for if it strikes and the residents looked like they were al advanced too and had no one else like mum in mid stages either, plus didn't have a vacancy when we enquired. So it seemed like this was only home we could pick at the time and not knowing much about homes or dementia other than mum and having to find and pick a home ourselves we could only go on what we were told which was to find an EMI home who could cope with mum when got agitated and aggressive about going home and refusing care. A couple of places we spoke to when we spoke about mums challenging behaviour suggested mums current home but while it fits on that level it's not great fit on rest and since being in there mum hasn't been as challenging in that way.
Part of me would like to move mum to a home with more of a mix or less advanced residents so there may be more for mum to interact with if there was one in our area but I don't know if even if we could find one if moving mum would upset her more. I don't know what we'd tell mum as reason she was moving, she doesn't think she needs to be in CH but we tell her it's since she was in hospital and the DRS want to monitor her but if we moved her she'd wonder why and that story wouldn't work as well. She'd have to do isolation again and get used to new staff and a new place and that might upset her more than staying where she is now instead of being a good thing. If we moved her where most people were in mid stages they may not be able to cope with her if got aggressive again or as things advanced and may have to move again later. Also SW said SS don't really like to move people unless they have to and as mum is LA funded I think we'd have to have good reason to convince them to agree to move mum. That's if we could find a better fitting place and I'm not sure we even could, so I'm stuck feeling guilty that mum is in a place not ideally suited to her. It's sad to think of mum being bored and fed up and feeling low and not being able to fix it for her. I want to fix it I want her to be happy a lot more than she is and I hate the fact that I can't do that.
Sorry for long negative ramble, this set off as a post to say thanks for picnic idea and then all my other thoughts and worries poured out too. :oops::(
 

Woo2

Registered User
Apr 30, 2019
2,987
South East
@annielou it is your thread to put on here what you want /need to . It isn’t negative , it’s how you feel . It is very difficult and there are no easy answers. You always do your best for your mum and it’s still better she is there and safe and well cared for , she does seem settled which is good . I don’t think with dementia you can get everything you would want for them . 🤗
 

DianeW

Registered User
Sep 10, 2013
787
Lytham St Annes
It’s understandable to feel as you do, but remember that dementia is so changeable and it’s never going to be possible to find the perfect place for your Mum......nowhere is ever going to be perfect ....her own home wasn’t perfect either. I totally get that as her daughter you continue to try and fix everything so that your Mum is completely happy.....it’s impossible and can’t be done sadly.

But once visits are allowed again I am sure things will ease a bit, don’t forget your Mum has company of the staff too, it’s not just residents she interacts with...so she is far from isolated.....I bet she has lovely chats and laughs at times with carers.

My husbands care home, are working on an isolated downstairs bedroom, that they are going to make into a Covid safe visiting room, it has its own french doors so no visitors have to enter the rest of the home, the details are still being worked on, but the room is almost done now. They have been doing outside visits prior to lockdown.

You may then be able to visit a couple of times a week, take lunch and as a consequence your mum may eat with you as you chat, or even colour again together.
 

imthedaughter

Registered User
Apr 3, 2019
521
The thing being that dementia is progressive, so I suppose it's just good timing if you get people around the same stage together. For craft and so on could they provide a more difficult activity for her or have her help or demonstrate? When I was teaching I was expected to be able to challenge the students who would be at slightly different levels. Maybe I'm being too demanding! I don't think dad joins in very often either, thinks it's above him, but he enjoyed Halloween bingo apparently which I was pleased about!
I think moving people is really painful. I hope we won't need to move dad but the reality is that we probably will. Settling in does take a long time. Keep going and stay hopeful if you can x
 

annielou

Registered User
Sep 27, 2019
1,774
Yorkshire
thanks @Woo2 @DianeW @imthedaughter xxx Nothings ever perfect is it you're right. I'm fine with that for me but wish I could find perfect for my mum, but it's not possible so will just have to make do and hope for best.
Halloween bingo sounds fun :) Mum used to enjoy playing bingo at DC when she went, she said they played themed versions. We used to play bingo at home when family visited and had a dvd bingo game too, we played with10ps lol.
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,010
High Peak
Am I right in thinking that since moving to the CH, your mum seems to know you as Andie and no longer thinks you are the other 'friend'? Has she also stopped asking where your father is, etc?
 

annielou

Registered User
Sep 27, 2019
1,774
Yorkshire
Yes when we've turned up for visits my mum has said Its our Andie and recognised me, though occassionaly mum has told me things our Andie did as if I'm not her but mainly she seems to know me for most of short time we're there. Mum didn't mentioned my dad during last visit, she asked if we were getting her some shopping as if she knew she lived on her own and we did her shopping like we did before she went in home, so we thought she was a bit more up to date with where her memories were but then mum asked if her mum was ok so not quite up to date as my nannan died in 1974. Mum still talks about my dad and my sister and I being children to staff in the CH, as well as talking about living with her mum and brothers and her having a job and often says she's about 50. So is still very mixed up in multiple time zones at once but thankfully when I have visited she has know me.
 

imthedaughter

Registered User
Apr 3, 2019
521
Yes when we've turned up for visits my mum has said Its our Andie and recognised me, though occassionaly mum has told me things our Andie did as if I'm not her but mainly she seems to know me for most of short time we're there. Mum didn't mentioned my dad during last visit, she asked if we were getting her some shopping as if she knew she lived on her own and we did her shopping like we did before she went in home, so we thought she was a bit more up to date with where her memories were but then mum asked if her mum was ok so not quite up to date as my nannan died in 1974. Mum still talks about my dad and my sister and I being children to staff in the CH, as well as talking about living with her mum and brothers and her having a job and often says she's about 50. So is still very mixed up in multiple time zones at once but thankfully when I have visited she has know me.
Must be a relief to not be that other woman anymore! At least when she sees you she knows you now 🤗
 

annielou

Registered User
Sep 27, 2019
1,774
Yorkshire
Had a call from CH about 6 today saying mum’s had another fall. Nurse said mum was ok and said not hurt herself. She said she assumed mum had fallen as she found mum on floor but none of the carers nearby had heard anything, so not sure what happened. She said they’d informed Dr but she had to go then as an alarm went off. Poor mum is so wobbly with not eating, its not long since she last fell. She had lots of bruises on her arms on Saturday bless her. I wish I could do something to help mum.
 

Bikerbeth

Registered User
Feb 11, 2019
1,711
Bedford
So sorry to hear your Mum has had another fall. I do so hope that your Mum starts to eat a bit more especially as she does otherwise seem fairly settled there.
🤗🤗
 

jugglingmum

Registered User
Jan 5, 2014
5,969
Chester
I've been following but not posting much.

I'm sorry to hear your mum isn't eating and that she's had another fall.

I'm glad you've got to visit her and that she is recognizing you, I think this indicates that she is settling and her anxiety is less.

With hindsight my mum had a high level of anxiety in her own home, which I think was because she knew she was meant to be doing things but wasn't sure what or if she knew what the process of how to do them was beyond her. So having the 'keeping house' bit of your mum's life gone might be helping.

Is the not eating an anxiety thing, I know you've said that your mum is quite a particular eater over the years, and wondered if there is anything anxiety lined that could be changed (I think she is on medication already?)

I presume they've tried leaving snacks in her room for her, as she might eat them away from others? I know most people eat better with others around but your mum is quite a private person so might be the opposite. Although she might then hide the food and then they've got to search her room for rotten food. Sorry if this has already been covered.