24/7 home care vs care home.

Discussion in 'I care for a person with dementia' started by Champers, Jun 16, 2019.

  1. Champers

    Champers Registered User

    Jan 3, 2019
    94
    Your hugs and thoughts are appreciated - thank you so much.

    Probably my last post for a little while as not much is changing at the moment.

    However, usual phone call received from MIL this morning wanting to know when we were taking her shopping as “my cupboards are completely empty” We know they’re not, but that’s another story.

    My husband told her that’s what she was paying the care agency for and that they now looked after everything as it had been her continuing and consistent wish to return home. MIL then went ape at him accusing him of abandoning her (after all the flack and opposition we took from the authorities to try get the right place for her!) We spoke to her carer who confirmed that shopping had been organised anyway. MIL then shouted, “Well then , I hope I die - and quickly!”

    I’m coming to the conclusion she wouldn’t have been happy anywhere we put her.
     
  2. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    402
    If you had moved your mil to a care home she would have been the same. My mother was unhappy at home and is now unhappy in the care home. At least she is safe there unlike home.
    Best wishes to you all. Is it worth not answering the phone to her for a while?
     
  3. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,027
    Female
    Chester
    Can you (and probably more importantly OH) step back a bit more.

    ie not take her calls and only visit weekly or less, a bit like the advice when someone first enters care.

    As Sarasa says at least you know she is safe, there is someone with her and all her basic needs are taken care of.

    Whilst removing her access to the phone might help (and would often be recommended) - she has 'capacity' to make these decisions herself - so can you encourage her friends to ignore (let go to answerphone) her calls, as this must be putting a strain on them as well.
     
  4. Champers

    Champers Registered User

    Jan 3, 2019
    94
    Thank you - I think that is very, very good advice. And having someone else suggest doing this doesn’t make me feel so bad, as I had already wondered whether it would be appropriate.

    We felt obliged to visit this afternoon as our son is home from overseas and therefore, needed to visit granny.

    The reception we got was very hostile. She blames us entirely for her present situation and says that we should be doing more to help and why hadn’t we sorted everything out? It was a waste of breath telling her she’s got exactly what she wanted - to go home. She accused the SW of not understanding that she was ill and therefore, not in her “right mind to make a decision” and couldn’t grasp that everything is now out of our hands because she kept telling SS that we were trying to put her in a home. She even had ago at her adult grandson, saying, “when I think of all the things I’ve done for you lot and now you won’t even help me.” She cried like a baby when we explained that if she wanted things changed, it was in her hands.

    You’re so right Jugglingmum, we all need space away from her. We couldn’t have done any more to fight for what we believed was the best, and now she’s rounding on us. I don’t believe MIL even knows what she wants and it’s heartbreaking to be accused by her of “abandoning” her and “not doing enough” I’ve blocked her landline so her calls go straight to answer phone for the next week. We can’t take much more of the emotional bit at the moment and it’s true, she’s safe and someone is with her.


    Her new carer was worn ragged last night too, she had her up seven times for trivial things so I had to callously say, please just put a report in to your manager. The more that’s logged, hopefully, the stronger our case will be.
     
  5. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,027
    Female
    Chester
    How's things going?
     
  6. Champers

    Champers Registered User

    Jan 3, 2019
    94
    Thank you for asking. :) That’s really kind.

    We’ve managed to get a social worker (a different one) to visit MIL and us this coming Monday to try and see if there’s a way forward. However, I’m still not confident that MIL won’t still stick to the ‘I want to stay in my home” mantra. I’ve kept keeping a log of everything and have recorded every single one of MIL’s pleading and begging phone calls to show she isn’t happy. We’ve also downloaded financial and health and welfare LPA forms and if possible, I’m going to get him to sign as the professional there and then. If they still believe she has mental capacity, then he shouldn’t have any problem doing it.

    We visited MIL today and she is very morose and sinking further and further into depression. She doesn’t understand at all why we have withdrawn from her care, and it was a pointless exercise trying to explain why. She was still trying to offload all her care bills to us to sort out and asked us several times if we were taking her to a dentists appointment next week. This, despite us telling her that it is now the agency’s responsibility to get her there. She grumbled that she couldn’t believe we wouldn’t even do that for her. The carer told me that she is also refusing to do any of the gentle exercises that the visiting OT had suggested and refuses to engage.

    I feel desperately sorry for the carer too. She’s from Eastern Europe and although her English is very good, she also seems confused about exactly what her job role is too. She told me that she had rung the manager three times to arrange shopping and they hadn’t got back to her. Unfortunately, MIL got a visiting neighbour to get provisions which weakened our stance somewhat. She seems to be under the impression that she is only “on call” from 8am to 8pm. Despite this, MIL has been calling her several times in the night either for a drink of water - flask is right by her bed - or to fluff up her pillows! It’s clear she’s been put in this particular job without knowing the full implications of MIL’s needs. There have also been issues with MIL’s continence and again, the care agency have not ensured that she had adequate pads. The care plan reads a little like a fluffy fairytale. Looks very impressive on paper - full of lovely little notes about the things that MIL would like and her preferences - but doesn’t seem to be put into reality as she’s just as before, sitting there with the tv on as background noise and staring at four walls.

    The domiciliary care does seem to be failing but as I said above, if MIL expresses a wish to remain at home during the meeting on Monday, we’re probably completely stuffed. Without exception, and without any prompting from us, everyone who knows her - family, friends and neighbours - agree that she needs to be in residential care.
     
  7. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,027
    Female
    Chester
    We didn't know when we did them but someone who has know her for 2 years can sign ie if you think a neighbour would be willing to do this then get them to do it. Cheaper and if you think no siblings will object.
     
  8. Champers

    Champers Registered User

    Jan 3, 2019
    94
    I’m so pleased to report that the SW who visited yesterday was an entirely different entity and was prepared to think outside of the text book! I assume he must read all the notes and emails that have bounced back and forth, but he actually listened and understood completely. He agreed totally and actually used the words that “I want to go home” can be a standard default reply from those with varying forms of memory loss. He acknowledged that clearly MIL was saying one thing to us and another to NHS staff and that as she had perked up when she was in hospital, he was confident that she would be a lot happier in residential care.

    MIL’s carer has reported that she has been wetting the bed for the last 4 nights and he said it was completely inappropriate that there was no access to full body washing facilities in her home (coupled with the fact that despite the carer requesting more pads, the agency have not provided them!) He was dismayed to hear the distress in the recordings I had made of MIL’s pleading phone calls and understood completely our reasons for pushing for residential care and our concern for her mental stimulation. I think my production of copious daily reporting notes may have shocked him too!

    When he chatted to MIL, he asked her what she wanted to happen and held my breath as I fully expected her to say, “I want to stay in my home” but she actually said twice, “I think I need to go into a home.” MIL has always had a tendency to fixate on specific subjects and it already seems that she’s moved on in her mind and is now more obsessed with the fact that we won’t move anyone else into her home and we’ll ensure it’s securely locked whilst she’s not there!

    After all the uncertainty and unnecessary battles, the final decision was so quick and simple - I could have hugged him! On hindsight, we certainly think MIL would have been very negative and complained bitterly had she gone straight into residential care too, so at least we now have the evidence that she wasn’t even happy with getting her wish to go home, so at least that box has been ticked. We’re fully expecting a lot of grumbles for the first few weeks so we’ll have to work hard to sell it to her to begin with.

    Luckily, there is still a vacancy available at the lovely place we had lined up for her in the first place so hopefully, everything should fall into place. We’re both in a bit of a state of shock and disbelief after weeks of confrontation, setbacks, bloodymindedness and tenacity.

    The funny thing was; as the SW left, he turned to us and said, “Can I leave it with you to make sure that the outstanding care bill to the home care agency is now paid?” (Now around £6000, and it will be ) Surely, that wasn’t the reason for his final decision?
     
  9. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,027
    Female
    Chester
    Seems odd doesn't it!
     
  10. canary

    canary Registered User

    Feb 25, 2014
    9,871
    Female
    South coast
    Oh well done @Champers - your tactics have played off

    Cynically, I might be inclined to wait until she is safely installed in the care home before paying off the bill.......
     
  11. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    911
    You would like to think not.....but then again....well done champers
     
  12. anxious annie

    anxious annie Registered User

    Jan 2, 2019
    112
    So pleased that finally someone in authority has seen sense and understands what your MIL needs
     
  13. witts1973

    witts1973 Registered User

    Jun 20, 2018
    637
    Male
    Leamington Spa
    #53 witts1973, Jul 23, 2019
    Last edited: Jul 23, 2019
    Hasn't MIL ever had pads prescribed as they would usually be prescribed by the continence team and delivered by them rather that a care agency having anything to do with that just like in our home,where they are always present to be applied by a carer,they can be purchased online and delivered quickly and that will give you some peace of mind that she's not going without for the moment until anything else is arranged, https://www.incontinenceshop.com/?u...VnJmymttT0_0USkcoTzk3Y2ki0MH-HchoCtVUQAvD_BwE
     
  14. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    402
    Well done for keeping your cool in this trying situation. Do you have a time scale for moving your mil. She may well be unhappy at first, but homes are good at dealing with that.
     
  15. Champers

    Champers Registered User

    Jan 3, 2019
    94
    Amazingly, the care home can take her tomorrow. I know it seems a bit keen, but I think it’s important before she starts wavering again. The manager was lovely when we met her a month or so ago and she told us on the phone today that they will make MIL feel very special tomorrow and make a big fuss of her. She’ll love the attention, that’s for sure! We’ll be guided by the manager, but they’ve arranged for MIL to arrive for lunch so I assume we just take a small overnight bag to start with and then gradually bring some more of her clothes over a few days?

    Sadly, when we visited MIL to have a chat about tomorrow, she had absolutely no recollection of the SW’s visit yesterday or what they had discussed together - particularly as they both spent a lot of time talking about both having lived in Hong Kong in the past and had been comparing experiences in different areas.
     
  16. silversea2020

    silversea2020 Registered User

    May 12, 2019
    81

    I am as pleased as punch for you @Champers ...at long last, Common sense has prevailed with authority !!! As @canary Suggests.....yes, make the payment only once in the care home etc...you must feel relieved now after this very, very upsetting and frustrating time - let us know how it all goes and have yourself a glass of something nice and cool on this extremely hot evening ! Sending you my very best wishes xx
     
  17. witts1973

    witts1973 Registered User

    Jun 20, 2018
    637
    Male
    Leamington Spa
    You could even uncork the champers
     
  18. Champers

    Champers Registered User

    Jan 3, 2019
    94

    :D:D:D:D
     
  19. Champers

    Champers Registered User

    Jan 3, 2019
    94
    Thank you! :)

    I’ll be honest, I literally could have hugged the SW! And it will be so much nicer to able to visit MIL purely to see her, not as we usually do because she needs something, or there’s a crisis or a job needs to be done.

    Quite agree about the care agency bill. We got the LPA financial form signed today by MIL, ourselves and witnesses. It depends on how long it takes to be registered whether we pay it ourselves or from MIL’s account. The care agency branch is only very recently opened in our area so I guess MIL’s business was a very lucrative one to lose too.
     
  20. Latitude

    Latitude Registered User

    Jul 12, 2019
    19
    Oh well done Champers! What an enormous relief for you all. Hopefully your MIL 's next chapter will be everything she needs it to be and she will enjoy the changes and pampering and soon adjust to her new home. Really pleased for you.
     

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