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anxious annie

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Jan 2, 2019
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Hi All,
Just a quick update, well I don't like to jinx things but ......since the care review when I spoke about not asking mum about things, just getting on and making microwave meals etc ..... mum has for the last fortnight been accepting these, and carers also making sandwiches on the days when she's been at day care for a hot meal at lunch too. Long may it last!! Also had the conversation with my sister and said I felt I can't come up more frequently than am already doing , so if she needs more support (and I understand that she does and am am fully supportive of this), that it will mean buying in extra care to release her. Now that mum is accepting more help, this would be an option. I have left it with my sister to decide what she'd like to happen and will take it from there, but she does accept that I can't offer more help than I'm already doing on my monthly visits and taking mum to all medical appointments, doing "bulky " shopping, paperwork, repairs etc. So feeling more positive at the moment ...... just hope I haven't spoken too soon and it all goes pear shaped!
 

Sirena

Registered User
Feb 27, 2018
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That is good news!
Things will inevitably change and she will need more help, but for the moment it sounds like it's working out. :)
 

anxious annie

Registered User
Jan 2, 2019
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Hi Sirena
Yes, thanks it does seem to be working out better .... at the moment. Will have to adapt as mums needs change. Thank you, and others who have posted on my thread, for all the helpful advice and suggestions.
 

charlie10

Registered User
Dec 20, 2018
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Hi annie....glad to hear things are going a bit more smoothly....at least until the next crisis! We were just about to try getting an extra carer visit in when he had a fall and ended up in hospital. He was there for 5 weeks so lost all his mobility....now he's in rehab doing physio and has convinced himself he will be up and running ;) again by the time he goes home so will no longer need any carers (we'll be happy if he can just transfer from bed to chair and totter a few steps with his zimmer :()....so looks as if we might have a fight again to make him accept carers....ah well, it's not as if we're not experienced by now :rolleyes:
 

anxious annie

Registered User
Jan 2, 2019
808
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Hi Charlie
Sorry to hear about your FIL, hope he soon gets mobile and back home. Good luck with getting the carers back in, but yes you're right, we seem to go from one crisis to the next!
 

anxious annie

Registered User
Jan 2, 2019
808
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Hi All
Just to say that things are going much better with the carers since the review. Mum is now fine with letting them heat up a microwave meal , make cup of tea and sandwich. They are now checking the fridge for out of date food, checking bathroom and emptying bins, so we feel it's better value for money. Also my sister gets in an extra visit to give her a day off at the weekend if it is getting too much, so much better. In fact I'm the one at the moment finding it tougher as I'm staying with mum on an extended visit for 10 days as she is due a tooth extraction and will need support to care afterwards. I will be glad to get home to normality but just hoping all goes well at the dentist! Am making the most of the time here tidying the garden and getting the house in order aw we anticipate mum having to move into care within the next 6 months or so. She is getting less mobile, withdrawing further into herself, and having more "accidents" in the bathroom. But nobody knows how quickly or slowly she'll deteriorate so we'll just have to see.
 

canary

Registered User
Feb 25, 2014
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South coast
It sounds like you have a good handle on things @anxious annie

If you are anticipating that your mum will need residential care within the next few months, then I recommend that you start looking at care homes now. It will take a while to decide on the place that would be best for her and many care homes have a waiting list. If her name is on a waiting list and you get offered a place, you do not have to accept it if you feel that she is not yet ready - you can simply ask that her name remains on the waiting list and there shouldnt be a problem. Equally, if her name is on the waiting list and there is a sudden crisis meaning that she needs to move into a care home earlier, that care home would be more likely to find her a place, even if she is not at the top of the list.
 

anxious annie

Registered User
Jan 2, 2019
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Hi Canary,
Thank you, that's really good advice. I've tentatively started googling a few, but now need to visit to get a feel for them. I hadn't realised that you could put a name on the waiting list and if not ready to accept, can still keep her name down for when it's needed.
 

canary

Registered User
Feb 25, 2014
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South coast
I've tentatively started googling a few, but now need to visit to get a feel for them.
When you go and visit try and look beyond the decor to how the carers are behaving. Better good care in a scruffy home than poor care in a beautiful one. One of the things to ask is what sort of behaviour they would not tolerate. Some places with outstanding ratings keep this rating by moving residents on when they become "difficult" and only keep the easy compliant ones who are in early stages of dementia. IMO they aught to be able to cope with wandering, resisting personal care and incontinence, but some care homes (even the ones who say that they specialise in dementia) dont.
 

anxious annie

Registered User
Jan 2, 2019
808
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Hi All
Just a quick update. Well, perhaps I did speak too soon about the improvement with the carers!! When I was there last weekend I read in their communication book that mum is again saying "it's too early for tea" and "Ive already got a sandwich in the fridge". I don't think they are asking her if she wants anything, mum is just volunteering this. I rang to speak to a supervisor to say that mum has a point as the calls are getting earlier and earlier. I said they need to be later as they have been for the last 2 years, and that staff could just say "yes it is early", then ignore mum and carry on with the tasks they are supposed to do RE the care plan. Also the sandwich already in the fridge is likely to be a half eaten one, and I also found out of date chicken that they're supposed to bin. They were supposed to be ringing me back with an update, but 3 days later, no phone call yet. I am hoping for an improvement when I'm up at the end of the month, and my sister will check the book this weekend. When I next visit my sister and I are going to visit 3 care homes in the town. These are the only ones that say they have dementia residents, so will see what they are like. We are planning to turn up without an appointment and see if they let us in. We're not taking mum with us as she will be at day care and would not be at all interested in going to visit as she is fine at home and doesn't need any help!
Sorry for the long rant, I just needed to get that off my chest!
 

canary

Registered User
Feb 25, 2014
25,018
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South coast
When I next visit my sister and I are going to visit 3 care homes in the town. These are the only ones that say they have dementia residents, so will see what they are like.

Be careful if they just say that they "accept" dementia residents, especially if they also have non-dementia residents. Often "accepting dementia residents" means that they only want the ones in early, easy stages and once they start wandering, getting up at night, resisting personal, incontinence and other normal dementia behaviours, they are likely to give notice. Be brutally honest about what your mum is like and ask them what sort of behaviour they would not accept. Try and look past the decor at the actual care given. Better good care in a scruffy home, than poor care in a lovely looking one.
 

anxious annie

Registered User
Jan 2, 2019
808
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Thank you, Canary. That is really good advice and I will make sure we ask those questions and see what behaviours the current residents exhibit. We certainly don't want mum to have to move, if she has settled, when her condition deteriorates.
 

Rosalind297

Registered User
Oct 14, 2017
111
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Thank you, Canary. That is really good advice and I will make sure we ask those questions and see what behaviours the current residents exhibit. We certainly don't want mum to have to move, if she has settled, when her condition deteriorates.

We have been looking for care homes for our mother and one of the questions we ask is how they handle end of life care for residents with dementia - if they give you concrete examples of their process and seem unphased by the question (and follow up questions) they are probably bona fide dementia care specialists. On a couple of occasions we found we were given half-hearted, generalised, vague responses so went no further with them.
 

Sirena

Registered User
Feb 27, 2018
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I agree with the previous posters, some CHs 'accept' dementia residents but they want easy ones who sit in a chair and are no trouble. They often won't tolerate basic dementia behaviour like refusing personal care, inability to follow instructions, or general agitation. If you see residents who look more advanced in the illness that's a good sign - your mother won't be asked to leave when she deteriorates. It crossed my mind that my mother wasn't 'bad' enough for the CH - I was wrong, within weeks it was obvious she fitted in perfectly well.

If one of those three CHs isn't right, look further afield - it makes no difference to your mother where the CH is, although obviously you/your sister need to be able to get to it reasonably easily to visit. I moved my mother a long way from her home to a CH near me - she has no idea where she is, all idea of geography deserted her long ago, but is perfectly content.
 

anxious annie

Registered User
Jan 2, 2019
808
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Hi Sirena,
Thanks for your advice. It's so useful to have people who have been through this making suggestions about what to ask/look out for. We would never have thought about most of these points otherwise.
 

anxious annie

Registered User
Jan 2, 2019
808
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Well, my sister and I visited 3 care homes last weekend. The staff in all 3 were friendly and welcoming . We sort of ruled one out as we both said afterwards that the none of the residents here seemed to be past the mid stage of dementia, although we managed to speak with the manager who said they did have late stage residents. She sort of waffled about end of life as well. The other 2 seemed to have a mixed range of residents, tho hard to assess really in a short visit. They are "homely", rather than "hotel" , but mum doesn't need a restaurant, hair salon etc. They both have visiting hairdresser, activity coordinators, but it seemed quiet when we were there, with lots of sitting around, which mum has said that's what homes are like. ( I didn't point out to mum that she sits and sleeps at home a lot!)We didn't take mum with us, and haven't spoken to her about this, it's just a comment she made a few months ago. We called in without appointments, but have now made an appointment for a weekday when I'm next up as the home manager in the 2 homes we liked wasn't working the weekends and we would like to speak to them first. Will update after these visits. Mum is about the same, just on that very slow deterioration. Thank you to everyone who has suggested things to look out for / questions to ask, when visiting the homes.
 

Sirena

Registered User
Feb 27, 2018
2,324
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I completely agree with you that your mum doesn't need a restaurant/cinema - there is a hotel-type care home near here and IMO it is all for the relatives so they feel better about the care home idea. The residents will not appreciate a cinema or a bar/spa. The ones you liked sound like my mother's CH, homely and welcoming.

I think 'what you see' depends a lot on what time/day you go. I have never visited at a weekend but suspect it's fairly quiet as I think activities lady is only Mon-Fri. But when I visit on weekeday mornings the activities lady is there so it's relatively lively. If I go after lunch, the TV is on in the background and the residents are mostly dozing in chairs - which is exactly what my mother would have been doing at home! The one thing which really livens up my mother is the weekly Music for Health afternoon - I often visit then.

Let us know how you get on.
 

canary

Registered User
Feb 25, 2014
25,018
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South coast
Sirena has said just about everything I wanted to say: - "hotel" types with cinemas, restaurants etc are not what your mum wants - I agree that I think they are either for people who do not have much in the way of cognitive decline, or are for the relatives! My mum was also in a care home that was homely and caring, but it was also very shabby - it took me a while to get past the decor, but it was exactly right for mum. Having a visiting hairdresser, chiropodist and optician was useful for the time once mum was unable to go out.

I agree that what it looks like will depend on when you go. The residents seem to be at their best in the mornings and that is usually when there is activities and everything feels busy. In the afternoon there was usually music playing and many of them (including mum) would be snoozing in the lounge. Sometimes there would be a PAT dog brought in, but it was generally much quieter. Then in the evening, most of the residents would be agitated because they were sundowning, wanting to "go home", crying because their mum hadnt visited, or getting into arguments! I used to avoid visiting in the evenings. Weekends were generally quieter with no activities arranged, but many of them would go out with family, or have visitors. Sunday there was a simple communion service taken by the local vicar.

The 2 that you are going back to sound the right sort of places. If you still like them having talked to the manager, put her name down on the waiting list for one, or both.