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"You're just someone who's here all the time"

canary

Registered User
Feb 25, 2014
15,747
0
South coast
Its a tough decision @Dimpsy and I think it is made all the harder because dementia means that they are unable to understand why care is needed, so there is no alterative than to go behind their back - you have to make that decision on their behalf.

As everyone has said, if she moves into a care home you wont stop caring, it will just be in a different way. I found there was always things to sort out for mum even after she had moved. What I did find, though, was that I became her daughter again. I could take her out for tea and cake, to the park to feed th ducks, to push her wheelchair along the prom and watch the sea or to look at things at the garden centre and she became a whole lot of fun again. I suspect that a lot of this was because I was no longer making her do things that she didnt want to do - like get washed and changed, or throw out food that had gone off, and I wasnt constantly nagging about her eye drops and pills and telling her that she couldnt do things like go to the shops that wernt there anymore.

Im sure you will find an answer
xx
 

Donkeyshere

Registered User
May 25, 2016
497
0
channel islands
I would echo @canary - my MIL had respite care about 18 months ago and then went into residential care 15 months ago, she is now in dementia care at the same home, before this she lived with us for 6 years, four years having dementia. Please try and chuck the guilt monkey off your shoulders, as Canary says you can still care but in a different way, in fact I think she told me the same when we were considering care home! But she was 100% right!
 

Dimpsy

Registered User
Sep 2, 2019
1,875
0
Thank you, all of you for sending such sensible advice down the wire.

Everything is happening so quickly, it's all a bit surreal at the moment. As arranged, we took mum for coffee yesterday morning. I must be dim because I assumed I would stay with her, but the CH manager told OH and I to go and enjoy ourselves (?!) and leave mum for a couple of hours. Mum was sat next to Valerie, who the carers had already decided would have a lot in common with mum.
Mum was happy as Larry, I was the weeper.

When we went back, she was still smiling and the carers had taken her for a walk around the home and to the loo.
She had declined a glass of sherry, but told the carers she used to drink sherry years ago - which she did. Her and dad used to have a small glass before lunch, isn't it strange how that memory came back.

When we came home, I asked mum if she'd enjoyed herself (yes) and said OH and I had booked a holiday as we needed a bit of a break and would she be happy to stay in ......... for a couple of weeks while we were away.

Dear Reader's, she said, Quote, "Yes, I'll go with the flow".
As easy as that and no more Brutus.

So yesterday and today, I've been busy labelling every item of clothing and all the bits and bobs we'll take in that she recognises - the green dish she puts her hearing aids in at night, her chair cushion, biscuit tin etc.
OH and I are going to take each day as they come and assume she'll be back home in a fortnight, although after reading your combined wisdom's, a little window has opened in my mind and we really need to decide what is in mum's best interest.

I watched mum sitting in the CH lounge, enjoying the hustle and bustle. It made me realise that maybe I wrap her up in cotton wool and am a bit too over protective?
So, it's all systems go for tomorrow!
 

Sarasa

Volunteer Host
Apr 13, 2018
3,725
0
That's such good news @Dimpsy . My mother's care home runs on sherry before lunch and prosecco for any celebration (and there are a lot of those).
 

Justmary

Registered User
Jul 12, 2018
111
0
West Midlands
Hi @Dimpsy I'm so glad things are working out for you. You sent me a kind message when I was feeling quite low and encouraged me to get back to my knitting, which is almost complete now. Thank you. I hope you have a lovely time.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
74,395
0
Kent
I watched mum sitting in the CH lounge, enjoying the hustle and bustle.

This is what kept my husband going @Dimpsy. He always was a people watcher and in the home he had many people to watch.

At home with me he often told me he was lonely.

Fingers crossed all goes well for you.
 

canary

Registered User
Feb 25, 2014
15,747
0
South coast
Such a good outcome. I hope all goes well today.
She will probably have forgotten being there before and may deny that she agreed to it, but you know that she will be happy there and while she could remember she agreed.
xx
 

Jaded'n'faded

Registered User
Jan 23, 2019
2,030
0
High Peak
One of the things that often happens with dementia is that people withdraw and cut themselves off from others. It's a 'Catch 22' because although this makes them lonely, sometimes they just don't have the confidence to continue with outside activities. Or things like mobility issues can cause problems. Sometimes the noise, hustle and bustle of real life, with traffic, flashing lights everywhere, people rushing and shouting... it just gets too much.

In a care home, the person, gets 'real life' back, but in a reduced, miniature way! There are people coming and going but mostly slowly and quietly. There are 'cafes' where you can have tea and cake and someone to talk to (or not!). You can watch the world go by but you're warm and safe. There are (hopefully) activities you can do or a hairdresser to visit. And no traffic or roads to cross!

Many people thrive in this situation because they feel part of a community and connected with 'what's going on' again. When I visited my mum I noticed much of her conversation centred around what was happening in the care home. (Or what she imagined was happening, which was far more dramatic!) She was never very happy (but would have been equally unhappy at the Ritz) but the place was definitely 'her world'.
 

Dimpsy

Registered User
Sep 2, 2019
1,875
0
I haven't been on TP for a week, and reading back your lovely messages from my positivity is difficult. What I imagined would be welcome respite for OH and I and decent care for mum hasn't happened and we're facing an awful predicament of what to do next.

Mum hasn't been out of her room since the day she went into the home. From day one she has been verbally aggressive and violent towards everyone. Most days she is left n her nightie. The staff are using a handling belt to restrain her arms so they can keep her clean. We only know this as the belt was left in her room, no-one has told us.
Not helping matter's is the staff lack of concern regarding her hearing aids. Mum is profoundly deaf and although she lip read for most of her life (she didn't have hearing aids until she was sixty, when micro surgery repaired her damaged ears caused by measles), she can't see the lips of the staff as they wear masks. Three days I went in and she had just one aid in, on Sunday, no aids and no glasses. I hunted high and low and found one under her bedside cabinet, the other underneath a pile of books on a tufty. The batteries were flat.
I had reported the missing aids, before I found them, and the carers just say they will tell the manager.

It's been a shock to see this easy-going woman turn into such a demented soul. The carers say it's their uniforms and mask wearing that's the problem and she will get used to it. They are not allowed to make her do anything she does want to do. So if she says she wants to stay in her chair all day, that's what happens..

Mum has another week to go in respite and we have to make the hardest of decisions.
If she comes home, will she remain hard to handle, or revert back to her gentle nature. If she stays aggressive, I won't be able to manage her on my own.
Do we turn the temporary stay to permanence? I'm not enthralled with the care she's received so far, the only upside is I've seen her looking out of her window at what's going on in the park. She seems to be enjoying watching bowls of all things.
Do we look at another care home?

Is it common practice to use a restraining belt? I can imagine it's a safe and convenient way for the staff to do their job but something else for mum to fear.
What on earth do we do. Added to all this worry is guilt for putting her in there and grief because she's not here with us.
Edit: I forgot to say the manager has been away over the bank holiday, but we're hoping to see her today.
 

jennifer1967

Registered User
Mar 15, 2020
6,328
0
Southampton
ive never heard of a holding belt. is it hard for them to put her hearing aids in? are they going back a few times to see if they are able to wash and dress her. the world must be frightening when you cant hear and have people with masks on coming to you when you dont understand what they are doing. is it a dementia home?
 

jennifer1967

Registered User
Mar 15, 2020
6,328
0
Southampton
ive never heard of a holding belt. is it hard for them to put her hearing aids in? are they going back a few times to see if they are able to wash and dress her. the world must be frightening when you cant hear and have people with masks on coming to you when you dont understand what they are doing. is it a dementia home?
are you sure they are not transfer belts which should be used to transfer them from one seat to another like a mobility aid
 

canary

Registered User
Feb 25, 2014
15,747
0
South coast
Ive never heard of any one using a restraining belt - Im not sure they are legal.
Like @jennifer1967 I wondered whether the belt you saw was a handling belt, which is used as a mobility aid

I wonder whether this home is the right one for her? Im getting the feeling that they deal more with physical problems and have less experience of the behavioural problems caused by dementia.
I would be inclined to look at other places, which is becoming easier now that things are beginning to open up again.
 

Jaded'n'faded

Registered User
Jan 23, 2019
2,030
0
High Peak
They sound useless. Do they even realise your mother is deaf? The wearing of masks has caused untold problems for deaf people who would normally lip read.

I can't help thinking that if they took off the masks (or wore the clear visors) and spent a couple of minutes talking to your mum before attempting to do anything, she'd understand their intentions better and maybe be more co-operative.

You need to speak to the manager about this and also the importance of the hearing aids, keeping the batteries charged, etc. Failure to do these things is basic lack of care and is not acceptable. If things don't change - in a big way - I'd look for a more suitable place. (Don't be tempted to take her home - that is not the answer!)
 

Sarasa

Volunteer Host
Apr 13, 2018
3,725
0
I’d talk to the manager quickly. They should be trying to use persuasion not restraint, so check if that is what their doing. If it is, I think you need to move your mum sooner rather than later.
I know you said this is a small home. Though it might not seem as 'homely' I wonder if a bigger place might be better for your mum Mine didn't settle in her home to start with, but did so when she moved floors. There were also far more staff around, and once she'd found one or two she trusted things went much better.
I agree that they don’t seem very clued up about dealing with deaf people. I get very stressed when I can’t hear people, and at least I usually have a clue what they are attempting to tell me. If you have dementia it must be very frightening.
 

Snuffette

Registered User
Jan 11, 2021
64
0
Oh my goodness! You must speak to the manager urgently. I have had a "mare" with my mum for the past week-ish. Normally quite cheerful etc., can't speak in sentences but we get by. It was like flicking a switch last week, aggressive, swearing, pushing me and the carers away refusal to eat or drink or take medication. Was finally admitted into hospital yesterday. The think she has had an infection, did a CT scan - all ok, but delusional as so dehydrated. Home intimated yesterday that as she is now more challenging I will have to find somewhere else for her - despite paying £1750 pw. It would appear they are all fur coat and no knickers and only want those residents who are more docile and compliant - sorry, ranting on your post lol Hope you get it sorted!
 

Dimpsy

Registered User
Sep 2, 2019
1,875
0
Rant away @Snuffette, I haven't been on TP for a week and I hope your mum is on the mend. Isn't it shocking when behaviour changes so suddenly.
My mum has been in the home for two weeks now, and yes, you clever people, the belt is a handling belt, used to assist movement, although we were told it wasn't used for mum and couldn't think why it was in her room (?) we have given them the benefit of doubt, as all the things we have asked for have by and large been done, for instance putting shoes on during the day, not sitting in slippers and her hearing aids are in every day and the batteries are being changed.
We have visited mum every day and watched the change in her as she has settled a bit. She stayed in her room for ten days but is coming downstairs to be with the others now. Her stubbornness has gone and she lets the carers care -first shower this morning, so progress is being made.
We paid for another weeks respite, but it really feels as if mum has settled, the problem is me.

I'm finding it so difficult to let her go, the house feels empty without her and I hate the carers who are looking after her because it should be me.
OH and I have so much free time, it's extraordinary how much of our day and night was taken up with sorting mum out and we don't quite know what to do with ourselves.
I feel such a sense of loss, which is ridiculously stupid as she's alive and kicking not five minutes walk away and I can see her and take her out as much as I want.
Deep down, I am starting to think mum is in the best place now. We have talked to a local dementia care agency who said they would be able to take over mum's care if she came home (at a huge cost, mind you), but mum really enjoys the view and people watching from her window, she's as happy with the carers as she is with me and has plenty of people to talk to.
My best interest would be for mum to come home, we always hoped she would be with us for the duration, but being honest, mum's best interest is maybe to stay where she is.
I'm not a brave person, I've always been too soft for my own good. As many of you have said, it's the toughest of decisions to have to make, organising someone else's future life, so I'll have to dig deep and learn to share her. The home are having a Garden Party at the weekend to which we are invited, it will be an opportunity to see if mum really is settling.
 

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