Sugar in her coffee

annielou

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Sep 27, 2019
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Yorkshire
Sorry to read things aren't feeling right at your mums home now. It must be really hard trying to decide whats best, if to move your mum or not. Its hard making decisions for other people and trying to know what's best for them. Am I remembering right that home was relatively new and not full when your mum went in? I suppose if was maybe it would have teething problems with staff and procedures at first but if been open a while You would expect things to be getting better. I have no experience of homes and know they must be busy places normally let alone now with added stress of extra care against covid but I'd have assumed you would be told about tests done and results and any new or changed medication. It doesn't seem right especially as you ring your mum regularly and they should have ample chance to tell you changes and concerns, though maybe each person think someone else has done it. If changing managers I suppose that would make things harder but owners should make sure home is run properly surely. Could you try talking to manager and mums GP about new medication and affect it's having on her? Though that might be difficult with manager leaving, do you have authority to speak to mums GP on her behalf? Maybe they would be person to talk to about mums new medication.
Sending hugs ?? as no real useful suggestions but really feel for you x
 

Bunpoots

Volunteer Host
Apr 1, 2016
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Nottinghamshire
Hi @Bikerbeth I'd be concerned if it was my parent in a home like that.

My dad's home didn't seem to use sedation for their "difficult" residents but knew who to keep apart and how to distract them. My fist impression of the home was very poor as it was dated and smelled of urine (but only the first time so someone had obviously just had an accident) but after a few weeks, when they'd had time to get to know dad, I realised it was better than the "posher" home dad had chosen for mum as they really knew their stuff!

Your brother doesn't have to live there and the most important thing is the care, not the ambiance. Maybe the new manager will be better but if not I hope you can find somewhere that better suits your mum.
 

Bikerbeth

Registered User
Feb 11, 2019
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Bedford
Thanks @Bunpoots. That also is another factor as I know there is another resident that Mum does not get on with but then I see from the photos they had been sat together. I think you are right about the ‘posh’, it was not my first choice but had a vacancy when we really needed it. As it was new and not running at full capacity I thought it might help Mum settle in better.
Thanks @annielou I do have a telco with the Clinical lead today. As GP was switched when Mum moved down my way I have no relationship with the practice. One of the items I want to discuss is how the ‘system’ works down here as totally different to where Mum lived.
 

annielou

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Sep 27, 2019
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Yorkshire
Good luck on your call today x I hope they can answer your questions and give you some info and reasons why not been in contact over it before x
 

Palerider

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Aug 9, 2015
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Really wondering if I have done the best for my Mum. Buildings and gardens at the care home are lovely. The carers and ancillary staff genuinely seem caring but lacking experience with Dementia residents, unless they are placid. Management is worrying and the new Manager has given his notice in after 2 weeks. The line is he was head hunted elsewhere.
After Mum had her episodes of being mildly aggressive with other residents and staff it was mentioned in passing to me that the memory team have assessed Mum and changed her medication. Having spoken to a friend of Mum who is a GP and whose Mum had Alzheimer’s it appears the new drug can be over sedating which is perhaps why Mum is more confused and staying in bed more which is so unlike her. Apparently the drug is not good with her atrial fibrillation either. It feels like they are sedating her rather than working to find out what interests her. The weekend receptionist will often have Mum with her and Mum seems to like that but other times it seems she is just left to keep tidying her room if she does not join in the organised activities. Am I expecting too much. Talking to the Dementia helpline today it appears not.
I am concerned that they have not involved me at all in the change of medication, they have not told me the results when they tested for a UTI, they have not found her glasses or even communicated to me about them (I do appreciate that things go walkabout or hidden) and this was at the start of lockdown. I see the photos on their FB page and Mum is always sat on the ‘outside’ with a scowling face and arms folded.
Ignorance is not bliss and possibly the home was the right one at the time but wondering if Mum does need a home with Alzheimers as a specialism rather than just a registered for Dementia. Of course that means also starting conversations with brother who thinks the home is fantastic.

Hmmm this is where I ran into problems with mums first care home and they were wanting to use sedation and also seemed in my opinion to not be very good at dementia care. Mum only became challenging on intervention or if someone tried to take her handbag (which has now gone anyway). It was only by stepping back and looking at the whole situation in the care home it became obvious it wasn't the right place. Yes it was plush and fitted out like a posh hotel, but it was also running at full capacity with hardly any room in the day for all the residents to sit and at a high fee for the experience. I had a few run ins with the staff over care and finally spoke with the manager. The memory clinic psychiatrist felt that sedation wasn't required but a new environment was and of course I agreed, I don't like the use of sedation in the elderly unless it is absolutely indicated. The home gave notice in the end as you know from my own thread. It was sufficient to get mium into place of safety initially, but to be honest when I checked the home out it was only registered for basic residential dementia care, which means a bulk of the residents get moved on at some point.

I was then faced with moving mum to another care home, but to be honest I was glad the manager had given notice because soemthing needed to change and it was the care home. I think your brother will come round if you explain to him that they can't manage your mum (or won't) when she is challenging and this is distressing your mum and she needs next level care -of course your pretty switched on @Bikerbeth so hopefully your powers of persausion will be enough
 

Sarasa

Volunteer Host
Apr 13, 2018
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Nottinghamshire
Hi @Bikerbeth, do you sill have your mum down for several other homes? Knowing what you know do you think they'd still be suitable? If so maybe phone up and see about bumping her up the waiting list. Chatting to her new GP seems worth a shot too.
The medication thing worries me about my mum too, and when I can get back in it's something I want to discuss with them.
Mind you your mum may well not be happy anywhere, but I think it is worth a move to see if things can improve.
{{{hugs}}}
 

Bikerbeth

Registered User
Feb 11, 2019
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Bedford
Thank you @Palerider - the first home your Mum was in does sound like my Mum’s. As they had only been open 3 months they also had places at the time needed. What was unfortunate was my first choice rang up with a place literally an hour after I had paid and signed the contract with the current one. From my conversation with the Clinical Lead today it is the memory clinic psychiatrist that took Mum off a low dose of Mirtazapine and onto 2 x 50mg Trazodone which from what I understand from Mum’s GP friend is quite heavy handed.
 

Bikerbeth

Registered User
Feb 11, 2019
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Bedford
Thank you @Sarasa. I think you are right. I am not sure Mum will be happy anywhere. I will have a discussion with brother before I contact the other homes that we viewed previously. Certainly my original first choice would still be the most suitable as they had different area for early/mid and mid/late Alzheimers stages and full nursing care.
 

Palerider

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Aug 9, 2015
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North West
Thank you @Palerider - the first home your Mum was in does sound like my Mum’s. As they had only been open 3 months they also had places at the time needed. What was unfortunate was my first choice rang up with a place literally an hour after I had paid and signed the contract with the current one. From my conversation with the Clinical Lead today it is the memory clinic psychiatrist that took Mum off a low dose of Mirtazapine and onto 2 x 50mg Trazodone which from what I understand from Mum’s GP friend is quite heavy handed.

I think thats very heavy handed and I would argue that it is not used. Has the memory clinic psychiatrist physically been to asses your mum? Or have the CH argued for heavy stuff and somehow justified it? When mum moved to her new EMI unit there were only 18 residents on her unit which is huge, this was the thing that changed everything for mum and at a rate of fees less than the posh home -ok its not posh but my god the care is so much better and they try to find out what the issues are rather than use medication
 

jugglingmum

Registered User
Jan 5, 2014
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Chester
Why not contact the other homes and find out if waiting lists and put mum's name down on the waiting list, you don't have to take a place up if offered and can still stay on the list. I think you need to put together a very strong case to your brother, against which he can't argue, and he never needs to know you have already started the ball rolling.

@Palerider is certainly an expert in this field and I know very little about it, but from my time on following DTP posts that doesn't seem a normal approach to medication.

Something I am always perplexed by is homes consulting with medical people and changing medication without involving the H & W PA holder - which I thought should happen and I am assuming you have H & W PA and haven't been consulted.
 

Bikerbeth

Registered User
Feb 11, 2019
2,119
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Bedford
Why not contact the other homes and find out if waiting lists and put mum's name down on the waiting list, you don't have to take a place up if offered and can still stay on the list. I think you need to put together a very strong case to your brother, against which he can't argue, and he never needs to know you have already started the ball rolling.

@Palerider is certainly an expert in this field and I know very little about it, but from my time on following DTP posts that doesn't seem a normal approach to medication.

Something I am always perplexed by is homes consulting with medical people and changing medication without involving the H & W PA holder - which I thought should happen and I am assuming you have H & W PA and haven't been consulted.
Yes I do hold the LPA for H &W so I did expect to be consulted. I knew after the couple of incidents where Mum was ‘throwing’ things at people they were going to consult the memory team but I never expected Mum to be put on a change of medication without being advised first. Certainly it explains why the last 2 weeks she has certainly become more confused and staying in bed.
the home have told me that they will ask the memory clinic to contact me and explain their rationale.
I think you are all correct I need to start phoning the other Care Hom
I did have some reassurances from the Care Home about other aspects I had queried. They do agree that the medication change has not worked but memory clinic are saying they need to see results of UTI test and blood tests first before reviewing.
Glasses are to be found and checked that Mum is wearing them everyday. So we will see if she is on a Monday when I get to see Mum again.
They agree that she does not do well in group activities and are trying to do some more one to ones (where she ‘helps’ on reception etc) Not sure how this can be kept up longer term and currently reception is only manned 4 days a week. She said they do have photos of Mum engaged in ‘things’ so I await them eagerly
they are going to send me her latest care plan.
They said they were finding it difficult to get Mum to have a shower or wash. Mum continually refuses help and gets quite aggressive. I made a suggestion that they needed to label the shower better as Mum, when I saw her last in March, confused the hot/cold lever with the on/off lever. So instead of turning shower off she ended up with cold water and understandably was not happy. It maybe too late but it might just work. A bad design decision for a dementia user.
I mentioned a few other items as well.
 

Sarasa

Volunteer Host
Apr 13, 2018
7,195
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Nottinghamshire
Hi @Bikerbeth , that sounds like a productive meeting, but I guess the proof will be if things are followed through. It sounds being a new home that maybe not all the staff are experienced at ways of getting people to shower etc. etc. and the fact that they don't seem to keep managers can't help.
I still think it would be worth re-visiting other homes on your list to see if they have vacancies and maybe putting her name down.
We intend to move sometime in the next year or two and when we do we'll probably move mum to a home closer to our new home. I chose the current one as it is a 'hotel' like one, and mum was a terrible snob, who likes 'posh' things. Now the dementia has progressed that isn't so important, so I'd be looking at places where she felt at home.
 

Bikerbeth

Registered User
Feb 11, 2019
2,119
0
Bedford
Hi @Bikerbeth , that sounds like a productive meeting, but I guess the proof will be if things are followed through. It sounds being a new home that maybe not all the staff are experienced at ways of getting people to shower etc. etc. and the fact that they don't seem to keep managers can't help.
I still think it would be worth re-visiting other homes on your list to see if they have vacancies and maybe putting her name down
We intend to move sometime in the next year or two and when we do we'll probably move mum to a home closer to our new home. I chose the current one as it is a 'hotel' like one, and mum was a terrible snob, who likes 'posh' things. Now the dementia has progressed that isn't so important, so I'd be looking at places where she felt at home.
Your last paragraph rings so true and so similar. It certainly was the easiest one for Mum to accept and has worked to an extent. As you say now the dementia has progressed, what was important is not so important now and priorities change. Also hindsight is a wonderful thing.
I could not face it today partly due to the hot weather and feeling drained but I will follow up next week with the other care homes. I have also seen a smaller one which had been recommended to me previously but as it was in an older building Mum would not have accepted at the time.
@Palerider also made me think some more things through. One of the nurses rang me today to advise that Mum’s blood test show she is lacking in folic acid and Mum is being prescribed a supplement. She seemed to think this was the real reason Mum is more confused not the change in medication. She also told me that the 2 drugs were basically the same but the Trazodone was considered better. Then she said there is no change in Mum’s behaviour. (Seems a bit contradictory) I was asking her some more questions on the process of the tablet change and no visit was made by the memory clinic psychiatrist, the meds change was all based on the Care Home records of Mum’s aggression to staff and other residents. Don’t get me wrong I would not like Mum to be hurting any other resident but having read posts on here I come back to my feeling that it is inexperienced staff trying to deal with the behaviour. I am well aware that Mum gets angry when she gets frustrated. I have also made suggestions of what they can do to calm her and it is in her notes. I know about the incident where she was throwing water at other residents and threatened to throw the glass jug at staff. I could hear her shouting and screaming in the background. The other one I heard mention of was when they put a commode into her bedroom (to take a sample) and she pushed it out of the room telling them what they could do with the commode and apparently she hit another resident with it and she pushed it into the corridor. this appeared to be an accident in frustration rather than deliberate. (Other resident did have a bruised foot but fortunately not more) . Again to me a communication issue as I think I should have been told if there is a record on her notes. So I now feel that I have to ask them to tell me what other similar events have occurred.
on the positive the clinical lead has told me that she is going to send me an action plan next week.
thank you @Sarasa and @Palerider for sharing your experiences/knowledge as it has helped even if my posts have become longeras I write my thoughts out.
 

Bunpoots

Volunteer Host
Apr 1, 2016
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Nottinghamshire
@Bikerbeth my dad was not really mobile when he went to his carehome or I’m sure he’d have been like your mum. He became aggressive with personal care when he first moved in and used to throw drinks at people - a lot!!
I knew he was starting to settle when the manager met me with a smile one morning and told me how he was ending her sentence with “...and no-one got wet!”
It took about 3-4 weeks for them to get to know dad and recognise his trigger points (and people) and they just worked around it.

There was never any suggestion that he should be medicated and the staff managed to get him from not walking to shuffling with a frame - something the hospital staff never managed in the 8 weeks he was there - and they did everything with a smile! Carers had a private room to retreat to and a manager who was always willing to listen to them when they’d had a particularly trying client. I did ask how the carers were supported (we all know how stressful caring for a PWD is) before I finally decided to keep my dad there. Staff turnover was very low and I still see the same faces on their Facebook posts 18months after my dad left.

I hope your mum gets suitable care soon - one way or another
 

Bikerbeth

Registered User
Feb 11, 2019
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Bedford
Thank you @Bunpoots for sharing your experience. It is helpful to know how others have behaved and been treated although obviously allowing for the fact that everyone Is different.
 

annielou

Registered User
Sep 27, 2019
1,917
0
Yorkshire
Glad you got some answers on your telephone call and will be getting action plan from home soon. It's still not sounding totally great yet though so I hope things improve for your mum and the way home keep you informed improves too. If not and you decide to move your mum, or if you decide to move mum anyway I hope the one you liked best before has space for mum soon x
 

Woo2

Registered User
Apr 30, 2019
3,652
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South East
I’m sorry to read how you are feeling and the things happening at mums home , I have no experience and nothing useful to say except to echo others in that I would be looking at other places you like and putting mums name down as others said you don’t have to take a place if it comes up but will give you more options , it does sound like inexperience in dealing with the Dementia . Hope your brother steps up and is more pro active and helpful. ? Hope you get it sorted out one way or another soon . Take care . X
 

Bikerbeth

Registered User
Feb 11, 2019
2,119
0
Bedford
Funny enough @annielou the care home rang this evening to say Mum has a big bruise on her big toe and it looks like she will loose her toe nail. They do not know how it happened. The nurse also said she is ‘going over’ in her shoes. I said she has for a long time but it appears she is worse now. I asked if she was wearing her ‘proper’ shoes or the low court shoe/ballerina type shoe. Nurse did not realise she had stout proper shoes.
Care Home reviewing is getting confusing. I looked at the reviews for the one I really liked but since I visited 12 months ago it has 2 really bad reviews in the dementia side by relatives saying they have not done well with difficult behaviours. I have then looked at different ones to previous and they will have good reviews but a poor CQC report or vice versa. I have looked at small and large but I guess I will have to narrow it down soon.
unfortunately @Woo2 my brother and I did not speak for about 18 years and it is a very fragile relationship. If we did not both hold LPA then I don’t think we would speak at all.
 

annielou

Registered User
Sep 27, 2019
1,917
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Yorkshire
Good they rang to let you know, your telephone conversation must be fresh in their minds so seems to have worked, lets hope it stays that way ? What a shame for your mum though, and a shame they didn't know she had proper stout shoes. Hopefully now they've noticed her going over and know she has them they will encourage her to wear them instead.
I noticed the difference in reviews and cqc report with some of homes I looked at recently too, its so hard and a hard decision to make picking one isn't it. I looked at a few on facebook as well as carehome site and cqc site. Some have closed group pages so couldn't see anything, but a couple with open pages had FB reviews too. One that had a good cqc report had some bad FB reviews and some of latest ones stated that some of the staff had been changed and they'd come from another home which had a bad report before and they were not giving good care at current home. Some of the home that had the bad report that staff were supposed to have come from had new FB reviews saying staff had been changed and things were improving.
Another home that had a good review last time done in 2018 is currently being investigated by police and some staff have been arrested and questioned over neglect. My sister had contacted it for a brochure about respite the other week. When she told me we didn't know about arrests there, they happened afterwards, but I said I wasn't sure about it as hubbys aunt had been there (not for dementia) and while family seemed happy with the care she got it was often closed for few weeks at a time for tummy bugs that went round and sometimes when in laws visited they said it smelt of wee. I was surprised to hear about recent arrests though. When I looked again at cqc site the other day I noticed the previous report in 2017 had requires improvement on most things except 'is the service caring' which was good so it looks like it improved enough for good report but things had gone wrong since.
My old neighbour went in a home not far from us a few years ago. She had lots of medical problems as well as dementia, she had been in bed with carers coming in multiple times a day before moving to home. Her daughter lived abroad and when she came over to visit her mum she told us she was doing much better in the home and was up and about a bit since being in there. She had photos of her sat in lounge in home looking well and said she was happier being in the home. When sis and I first looked at respite last year I looked at that home but it had a required improvement cqc report, though some reviews on carehome site were good about the care their family had been given. The bad points on report did seem more to do with record keeping, plans and home upkeep rather than care given. When I was looking again recently it had a good review done this year. A new manager had been put in place, home had been decorated and bad points had been worked on. There are two homes near each other owned by same company and other still had a bad report though some points had been rectified and when I looked that'd also got new manager but later than other home so it may just not have had time to up its game yet before report. I thought that it was good had improved but then I do worry if they had worked hard to get good report but company running them both might let things slip again afterwards. Its hard to know without a crystal ball really. I find it all mind boggling, we want whats best for our loved ones but how can we know.
When I look at reviews for holiday places I look at if the good and bad points are about something that I would be bothered about as some things people complain about are not important to me, or things they shouldn't expect anyway and sometimes when you read them you get impression they are just moany people. Sometimes I'll look if they've reviewed other places and if they consistently moan about things with not much reason I ignore their reviews. That won't work with care homes really though will it, there's no trip advisor for care homes and most people won't be able to review more than one so there's no way to know if someones a serial moaner or has a genuine gripe. I rarely leave reviews on things and I bet loads of people don't either, whether they've had good or bad experiences so it's impossible to know really.
Oh dear I've depressed myself now, :( Hope I've haven't you. Sorry x Good luck with it all ?.
 

Woo2

Registered User
Apr 30, 2019
3,652
0
South East
I understand , it’s very difficult isn’t it . ?

Mum too does that, have had to change her shoes and slippers . The looking for a good care home seems like a minefield , I went to a few with my friend , we both liked different ones , So much harder in lockdown , can’t beat being able to go visit them . hope mums toe isn’t too painful .
 

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