24/7 home care vs care home.

CardiffGirlInEssex

Registered User
Oct 6, 2018
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I’m assuming this isn’t unusual, so I guess we just want reassurance.

Visited MIL in care home who was very down today. She gripped my hand, told me she was so lonely and thanked us profusely and gushingly for visiting her - We’ve visited every day without fail in the last 10 days since she’s in there! She said that not one of her friends has been to see her and how she wished she was going home (Aagh, not again!) I pointed out how lovely and friendly the care staff were, but apparently, “they talk to everyone else but don’t talk to me.” She was very grumbly that “other people get to have hip replacements but why are the NHS ignoring me?!” Despite her being told numerous times that she was far too frail by the doctors when she was last in hospital.

By coincidence, when we were leaving, one of her neighbours, who has been wonderfully supportive, arrived. She told us she had visited alone twice during the week and had brought another friend with her on another day, despite MIL saying no friends had visited at all. According to this lady, MIL had told her that we had never been in to see her at all and had abandoned her!

Is this a typical dementia type reasoning or are we being slightly manipulated?
This is absolutely typical. My aunt, who had Alzheimer’s, would tell my mother every week that she hadn’t seen her daughter for months and didn’t know where she was or why she wasn’t visiting. This at a time when the daughter and her family spent most of every Sunday with her and took her out for lunch practically every time! In fact when they’d been out and had lunch and taken aunt back home, she would almost immediately ask whether they were going out for lunch today! So please don’t worry about this with your MiL. To coin a phrase I often used in my working life, don’t look for logic where there is none.
 

DesperateofDevon

Registered User
Jul 7, 2019
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It’s going to take a while for you both to adjust to MIL being in CH. she’s safe, clean & well fed & watered.
My Dad is losing weight daily - it’s part of the course of dementia. He will tell me he hasnt had food, but CH divides the day by food & activities. Breakfast, mid- morning snack, lunch, mid- afternoon snack, tea, supper & bed time drinks & snacks! In between this food fest fruit & soft drinks are on offer, plus nibbles if required.

I’ve even gone in at meal times to eat with him, or encourage/ help him. Plus taking treats to tempt his appetite.
Other times the CH give him protein drinks to boost him.
Honestly I can’t fault the carers, they become fond of all the residents & their quirks.
 

Champers

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Jan 3, 2019
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After all the saga we had in July to get MIL into appropriate care - documented at length earlier in this thread - we requested under FOI to see the social workers report. To say it was inaccurate was an understatement. Husband and I went through it line by line and requested inserts, amendments and deletions on certain comments. Luckily, I had made meticulous notes at the time so felt in a strong position to do this. We’re not usually this pedantic ( well, not until we got involved in this whole scenario! ) but there was clearly a question in the SW’s mind about our intentions, which we wanted removed from the records. We’re both just a boring middle aged couple that have never rocked the boat or challenged authority to see some of the comments and observations made about us were very upsetting.

One entry said that I had “put the phone down on the occupational therapist” I definitely didn’t and when I queried this, the response was, “at the end of any telephone conversation, the receiver is put down” Maybe, but the clear inference was that I’d put it down in temper!

The NHS/county council have now come back and acknowledged some errors on their part and agreed to amend their records plus keep a note on file that we had challenged the contents but that others will stand as they stand by the “author’s accuracy”

One of the things that has outraged me personally the most is an email exchange between the SW and the care agency manager. She had written in an almost casual, matey way to the SW about she found my husband aggressive, confrontational and bullying to herself and his mother. She’s even recorded that she overheard my husband tell his mother, “You’re going into a care home because it’s cheaper and that’s it!” That was never said, and certainly never in that tone. We did try to explain the difference in cost to MIL but didn’t ever force the issue because it was very apparent that she didn’t grasp the concept and was unable to retain enough information to process it, so it would have been pointless anyway. There were several other embellishments added that certainly weren’t said by us. The email was written retrospectively and in my records, on that day, we merely all met at MIL’s home to assess and discuss arrangements for her ongoing care. There were no conflicts or clashes - just a general look-see visit by the agency.

Paradoxically, the manager had expressed a personal opinion that she believed we were motivated by money, despite the fact that her agency were charging MIL a massive amount for her care and would stand to lose a substantial contract if she moved into residential care. If anyone was motivated by financial gain, it was her company!

My dilemma is; as MIL is now happy and settled in residential care and we’ve got the best for her in the end, do we just let it go? I’m torn between just shrugging my shoulders and walking away and on the other hand, wanting to challenge the scurrilous note about my husband.
 

TNJJ

Registered User
May 7, 2019
2,967
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cornwall
Hi.No I certainly wouldn’t!I have just put in a complaint to dads care company about basically “unsafe practices”!So I expect there is going to be quite a few remarks on dads file about me..I’m not one to let go.But dad wouldn’t complain,but he is like that..So,carry on is my motto.
 

Moggymad

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May 12, 2017
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Hi Champers I was one following the whole sorry saga relating to your MIL. Unfortunately I feel you are both a victim of 'first impressions' by the care agency manager & first impressions are hard to shift. She obviously has a motive to stay 'chummy' with SS & put a 'I'm on your side' slant on her communications with them. It sticks in the throat & It's difficult to get past that. I totally understand your outrage & wanting to set the record straight. I am always wary of how I come across as I think there is a lot of unprofessionalism in the care industry,I have seen & heard it myself. Standing back & looking at the situation as it is now, your MIL is happy & settled which is what you have achieved because you had to fight for it. Your feelings are the issues now. Can you turn your back on it all? How does your hubbie feel? It's too easy for me to say what I would do, you are the ones with the feelings of injustice. X
 

Louise7

Volunteer Host
Mar 25, 2016
4,684
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The trouble is that notes which contain 'personal opinion' or perceptions are very difficult to challenge under GDPR. Other than them noting that you have challenged the contents it's difficult to see what else can be done when it's one person's word against another. The care agency manager is unlikely to change her opinions so you may well be spending a lot of time and energy with no result at the end of it. I don't blame you for wanting to set the record straight - I've been in the position where health professionals/social services have recorded things that are false in order to protect themselves - but sometimes you have to let things go. I suggest that you weigh up the pros & cons of further action and then decide what you want to do.
 

Champers

Registered User
Jan 3, 2019
239
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Thank you all.

I think, on the balance of things, you’re correct in saying let it go. We’ve got the best outcome for MIL - she’s doing so well - that we've been totally vindicated in our actions. I don’t like having untruths recorded about us but if things continue as they are, there will be no reasons for any of these agencies to become involved again so I suppose, what does it matter what they think of us?

I really appreciate all of you taking the time to read and respond. You’re a wonderful group of people. Xx