Separate names with a comma.
Discussion in 'I care for a person with dementia' started by jorgieporgie, Apr 18, 2016.
Looking for problems????!!! Put everything in writing @Lavender45 x
I am too indignant on your behalf, Lavender, to say anything coherent or helpful. By all means, put it all in writing, maybe in chronological order?
I'm so sorry.
Thank you Amy, Dollybird and Hillybilly. The social worker isn't getting away with the comment. I will take it further. As a general rule I'm quite a quiet person and making a fuss doesn't come easy, but this is mum's care and she's pushed me just a bit too far. X
I'm afraid it was alcohol rather than tea, but just one glass. X
How I would love it if we could somehow swop minds with those people and let them have a week of our lives to let them truly see what we do and what we have to endure. Lavender I am so sorry for you that you are being put through this with your mum. It's just dreadful. They just have no idea, do they, and some do not even do anything to help us. I would go higher in Social Services - maybe they can move your mum somewhere more suitable/safer? How on earth can they get away with continuing to make mistakes with the meds?! Unbelievable.
I had a bit of a meltdown with the DNs today. Apparently the 'system' has removed the comment that they should call me asap in the morning so that I know roughly when they are coming and so therefore can have mum ready in bed. I know they probably have other more serious cases than mum, but it's my day for a break - I need to know! A lady from the office called me and talked nonstop and would not let me get a word in to try to explain why I wanted them to call me, I got very upset on the phone. The DN who came was lovely, apologised and we now have a new system in place where they will come by 11, and if not I am then to call to find out what's gone wrong! I have also cut the visits from 3 to 2 a week - the very good news is that mum's pressure sore is healing nicely - it's smaller than it was and the last two nurses said there is nothing to pack as it's too shallow. Thank God for that, I was really, really worried that it would get infected because of where it is, and that some kind of sepsis would carry mum off.
We are still working on the mobility. Mum can stand on the stand aid, with help, and I can now transfer her using a safety belt. I really hate the evening carer calls, so hope that maybe in a few weeks, when I'm a bit more confident with the transfers, I can stop the evening calls, at least on some nights. It will mean more work for me, but will reduce the horde of people still tramping through my home. Oh how I long for the times we had a carer only a few times a week - I thought that was bad - little did I know!
I don't feel so low and desperate now, I think I have gathered myself up again. Mum stays at home for a bit longer, for now, anyway. I'm not sure how this can possibly get any worse - and if it does, then it will probably mean her just spending more or all of her time in bed - which in fact may become easier for me, if that makes sense.
"How much longer?" keeps running through my head. Sadly no one can give me an answer.
Just caught up, I really don't like this new TP no idea how to send PM's anymore.
Marnie I am glad your Mum's sore is healing, they really are a nightmare. We use to get Mum's better and then it came back with a vengeance.
I understand how you feel that it is easier your Mum been in bed most of the time, it was the same for me I knew were she was and out of danger, its peace of mind. Your doing really well.
Lavender dose your nightmare ever end, I would be fuming too. Your not silly and your following the right procedures all you want is the proper care for your Mum, that is what she deserves not this messing around with meds, god knows what side effects its having on your poor Mum. Keep up the fight your a brilliant Daughter.
Rosy how are you and your Mum, hope all is well. Are you still managing to get out on a Monday for the singing.
Hope everyone else is having a peaceful weekend. Hugs to you all xxx
Good morning everyone.
I waited and waited for the promised call from the social worker's manager yesterday, but no call back. I wasn't up for letting her off the hook, I'd been stewing over it all weekend. My conclusion was that the social worker is a bully. The comment about me looking for problems wasn't her first bit of nastiness, nor was it the second to be honest. She's very careful to ensure that she only makes her negative comments when there's just me present. Her attitude is different if my cousin is with me. I won't let her bully me so her manager not calling me back wasn't acceptable. I wasn't letting this drop. I called him.
The manager told me that the social worker (how I wish I could name and shame her) admitted that she could have handled things better. The manager asked what I would like to happen in relation to mum. I told him I want exactly what I've said to her all along. I want a move to be considered if a suitable vacancy comes up. He has agreed in principle based on the breakdown in trust between me and her present home. I have said that I do not necessarily need a different social worker, but that I will want a change if her attitude doesn't change. I'm hoping my discussion with the manager makes our social worker realise that I'm not a push over and that I won't be bullied or intimidated by her. I can and mostly do play nicely, but she crosses me at her peril. I will complain and I will make a fuss.
Anyhows, the safeguarding incident is still being investigated, but it seems likely it will be upheld. The home cannot really justify the 2nd dose of diazepam being popped in daily. I'm not sure what this will mean for the home. The CQC could become involved. I hope it's more than a slap on the wrist though. The social work manager said if this happened to my mum there is a good chance it's been happening to others. Mum's unlikely to be an isolated incident. Just have to see how that plays out.
Well at least you seem to have the SW manager on your side Lavender. That's something, in the sorry tale. Have you been to visit the other home you had your eye on recently, just to get a feel for whether you think it might be a better option for your mum?
Hope everyone else is OK. The thread has gone mighty quiet recently! We haven't heard from a few in a while - hopefully you are all OK, if not posting.
Life here continues and I seem to be getting used to it, though I have no idea how sometimes. My worries about using the hoist on my own have fallen by the wayside as I am now using the stand aid (rotunda) to transfer mum around. The belt that comes with it is wonderful, as if mum slumps mid transfer, then the two straps around her bottom cradle her in a semi standing position. I am on the verge of consigning the hoist to the garage, out of the way, but don't want to count my chickens just yet - will wait a few more weeks before I do that. Last night mum managed to eat dinner with a knife and fork. Sometimes she struggles and I give her a spoon, but she seemed to be slowly getting back to 'normal' eating process, so I let her carry on. Her appetite gets better all the time. But, her muddlement is a lot worse. Mornings are better, she is brighter and makes a bit of sense, but usually by evening, when I can see she's tired, then it's just a stream of muddled stuff, much more confusion than before the stroke. Very sad. Sometimes she struggles to complete sentences/find the right words, and sometimes she thinks I am someone else other than her daughter. And, as ever, evenings are when I am at my lowest, and most tired, so get upset more. I guess that's only natural. All sores are now healing. All I need to do now is fix the incontinence and make her walk! Possibly all a step too far, but I will not stop hoping on the walking front. If she never walks again, I have to get used to the difficult way I have to now deal with toileting. If she manages some kind of walking in the future, then at least the toileting and changes may become somewhat easier. I've decided mobility is more important than her becoming continent again. I do exercises and stands with her every day, I can't really do any more than that.
@Lavender45 well handled, fabulous assertive way. It’s unfair that they think carers can be treated that way. I do hope CQC become aware and Mum gets the care she deserves.
@Marnie63 good to read about Mums progress. Take care of you.
Hugs out to all and yours from me. X
Just catching up, I’m struggling with iPad issues & getting disheartened on posting :-(. Started a thread to try to get things changed
PM’s are now Conversations???? If you click on the envelope at the top, you can “start a conversation”. Start typing the name & you can select from the drop down
Just stood mum up from the wheelchair. Me trying to balance brakes on wheelchair on and off and mum holding onto the handles of her rollator (brakes on!). Asked her if she could take a few steps. She stood and looked at her feet, didn't move them, but tried to push the rollator forward, so can obviously still remember what it is, and then I bottled out and sat her back down on the wheelchair! Think it's a bit too dangerous to try on my own. I think I will just have to keep working with the physio to see if she feels mum has enough standing strength to try a few steps, but will probably need some new equipment. The physio visits us at home as no idea how I could get mum into the car at the moment, but works for a local rehab organisation which has all kinds of state of the art equipment to get people back on their feet. I wonder if I would be able to get mum there in a wheelchair friendly taxi some day. I also wonder how surprised they would all be that I'm still trying to get my rather elderly mother with dementia back on her feet!
I am not giving up, yet.
Oh thank you Sam really do not like this new set up. Hope your well!
Marnie well done you really are doing wonderful, I am sure you will succeed getting your Mum on her feet again soon. That's a good idea about a wheelchair friendly taxi you just wheel the chair into the back.
Rosy do hope you and your Mum are ok, we haven't heard from you for a while.
Worrier how are things with you too.
I do not post much as I think stepping away from the dementia world for a while is not bringing back all the sordid memories for me at this time, when I read your post it dose upset me what your all going through and if I can help in anyway from my experience I am always a PM away, but rest assured you all are still very much in my thoughts. Big hugs to you all xxxx
Hi @jorgieporgie im struggling with the site, it seems to be iPad’s that don’t work :-(
I’ve started a new thread to try to get things changed, feel free to add what is happening for you & maybe things will get fixed
Have a hug , it might help
Hi everyone. Hope today is at least OK for everyone. As always things are "interesting" here, but when are they ever not. It's just the norm now.
Last week at the stand off meeting between the home, the social worker and me it was agreed then the home would ask for mum's medication review to be brought forward from mid December to ASAP essentially because the home agree that there is potential to have mum's medication reduced, a laugh really when you think they've been over medicating her and would have blithely continued to do so had I not made a fuss.
The home spoke to mum's community mental health nurse, who spoke to the consultant who refused to bring the review forward, she had a better suggestion, she thinks the home and I should have weekly meetings to discuss how mum is. This was conveyed to the home by the mental health nurse. The home then rang me. That's effective! Chatting isn't reviewing her meds. I cannot reduce them, neither should the home without the consultant saying so, so what's the point that in that. If mum's medication were reduced she might be a little more alert and there might be a chance of improving her non existent mobility. The longer she continues not to mobilise the less chance she ever will. I know it's a long shot, but I'd like it to be a shot we could at least try for. The other issue is a purely selfish one. I need to go job hunting soon, that's not very compatible with weekly meetings with the home.
You all know me by now. I've now got the number for this consultant's PA and I've left a message asking the consultant to ring me. I'll be ringing again if I don't get a call early in the week.
Whilst talking to mum's mental health nurse I asked him once again to clarify when the consultant prescribed diazepam. He says the consultant wrote to mum's new GP on 21.09.2017 requesting the GP prescribe 2mg of diazepam at 3pm then a further 2mg available as a prn. Mum moved to PC on 19.09.2017, he cannot see that the consultant prescribed it to be given any time between 19.09.2017 and 21.09.2017. The home swear she went to them with diazapam in place and that their only error is not noticing that the 2nd dose had gone from a regular bedtime dose to a prn. I have no idea who is telling the truth and when I speak to the consultant I will be asking her. Nothing like getting it straight from the horse's mouth if possible is there. X
Yep Hillybilly. Couldn't make up some of the unbelievable rubbish these people talk. I swear mum's consultant lives in some parallel universe, she certainty doesn't inhabit this one! X
It's mum's birthday today, she's 82 today. I've been in this morning with my cousin and his wife. Mum was on good form. I don't think she really understood what the cards and presents were for, but she was enjoying them and that's enough.
The home had put a balloon tower in her room which was really nice, there's another resident having a birthday today so they will have a joint party this afternoon.
There was one sad thing which has left me upset. Mum has slippers I took in about 2 weeks ago, but they are slightly tight so I've replaced them with 2 pair larger and broader (2 in case of accidents, don't want her in damp slippers). I asked one of the staff if they have a spares box I could donate the tight pair of slippers to. The nurse seemed pleased, but what she said was heart breaking. She said not everyone here gets visits like Betty and not everyone has as many things brought in for them as she does. I know it's true. I don't see many visitors around, but how sad. I guess some people don't have family to rely on, or family living a distance away making visiting more of a challenge, I'm just so glad mum isn't amongst their number and that I'm able to make sure she gets anything she might need or want. Hopefully someone will get good use from the slippers. I might see if there's any way I can add to the spares box for the people who might just need something replacing. It'll make me feel better somehow.
Enough with the doom. Here's a picture of mum taken today. It's shloer sparkling rosé in her acrylic glass by the way. She's not getting drunk on my watch.
That is great.. Your mom looks good in the photo and it is a good day