Dementia Outreach - am I over reacting?

Discussion in 'I care for a person with dementia' started by Neph, Feb 13, 2015.

  1. Neph

    Neph Registered User

    Jan 27, 2014
    So as some of you know mum is in end stage and is surprising everyone by how she is holding on. Up until a couple of months ago she was pretty much left in peace, bedridden, screaming when anyone moves her as she gets confused.

    So a couple of months ago the Dementia Outreach team became involved due to a doctor deciding that she needed stimulation and to be sitting up in the living room for an hour or so a day. (not my mum's usual GP).

    I can't see what the benefit is, she gets distressed when she is handled, always looks like a frightened rabbit when she is downstairs and always looks more peaceful when she is in her bed, with the TV on or the stereo.

    I've asked them not to take her down, she is less than four and a half stone and is just skin and bone, as I said the chairs they had were too big for her. No they insisted the chairs were fine, now I find out that they are bringing a new chair for her next week as the ones in the home are too big (I wonder why it's taken them so long to work that one out).

    I've asked to be informed when anyone visits my mum, but found out that the SALT team had been out due to her choking when swallowing (something that both me and the nurse at the home had not witnessed) sometimes she coughs a little bit, but now they don't want her to have a straw and want her to sip from a cup, I tried to give her some last night and it went everywhere.

    I was going to ring them both and give them a piece of my mind today, but decided I would go back and see her tomorrow and ask one of the carers to show me how they managed to get fluid into her.

    My gut feeling is that mum wouldn't want to be fussed with, she is so frail I am concerned that she could easily get bruised or her skin broken. But I keep being told that my mum needs a 'quality of life'. Maybe if they had been involved two years ago I could have understood it, but I just feel like they are doing it for themselves to look good and not for the benefit of my mum.

    Am I wrong in wanting to ring both the outreach team and the SALT team? According to my husband 'they know best'. They don't know my mum, they just see a dementia patient in bed, I just don't know what to do, I don't want to make it difficult for the home as they have been brilliant with mum, to be honest I think if she was still at the care home she went into originally she wouldn't be here.

    Suggestions would be appreciated.
  2. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    If she is so thin and frail, and being moved distresses her so much, then I would definitely agree that it would be far kinder to leave her in peace where she's comfortable. Is it improving her 'quality of life' to distress her and move her from where she's comfortable and content? Not to me, nor I suspect to anyone who doesn't lump 'elderly with dementia' all into one convenient category. I would never automatically agree that any 'professional' automatically knows best. You will know and understand her better than any of them.

    In the past I have asked my mother's CH staff not to move her around for activities. She is not bed bound, but dislikes very much being made to move from her chair, and in any case is way past being able to enjoy or participate in activities. They made no objection at all.

    I think there is sometimes a bit of a tick-box culture in this context. CH staff once told me they had taken my mother to an activity which she didn't want to go to and wasn't capable of enjoying, because the CQC people were either there or due, and apparently anyone 'just sitting' would mean a black mark. Never mind that she was so old and in late stage and preferred to be left in peace. I said that if it happened again they were to leave her be and refer the box-tickers to me. Again they made not a murmur.
  3. jasmineflower

    jasmineflower Registered User

    Aug 27, 2012
    Just noticed that you didn't have any replies you your heartfelt post. I think it may be because it's such a difficult situation.

    I'm no expert, but I think I firstly speak to your mum's GP to get his/her opinion and ask for a visit. Then I would be asking for a meeting with all the parties involved to discuss the best way of looking after your mum.

    We have found our local Alzheimer's Soc Support worker to be a mine of information and sage advice .

    Hopefully a more experienced member of TP will be along soon with some good advice.

    I feel for you - it must be such a difficult and heartbreaking situation
  4. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
  5. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    eastern USA
    Hello. I honestly don't really understand the UK system, so I hope this doesn't sound too out of line, but this sounds a bit like abuse to me. When does "care" and "quality of life" become an opening for abuse to occur? My mother is not thin, but her skin is very fragile, and being carried around while also feeling confused and anxious initiates misery; it does not offer quality of life *improvement*.

    It is possible that I have misunderstood the situation. I couldn't give my loved one over to strangers like that. How do they know better than the family member who is bonded with the person receiving care?
  6. TinaT

    TinaT Registered User

    Sep 27, 2006
    Have you got medical POA? Are you the significant relative? Both these questions are important because if you can answer yes to only one of them then you should ask for a Best Interest Meeting with the care home.

    At this meeting you can thoroughly discuss all your concerns regarding your mother's care and the decisions taken will be formally put into her Care Plan. Any visiting professionals such as doctors, Salt Teams, etc., etc., then can be informed of your wishes for your mother without any dispute if the have been agreed at a Best Interest Meeting.

    This I think would be the best way around the situation you are facing.

  7. Neph

    Neph Registered User

    Jan 27, 2014
    Unfortunately I don't have a medical POA, by the time I'd finished looking after my dad it was too late to even consider POA and had to go the COP route (nightmare).

    Thank you all for your answers and I will be asking for another meeting, we've had one and tbh the manager on the dementia team was not at all interested in my POV.

    The whole cup thing is a nightmare, it is a sippy cup but she can't seem to get her head around it, will be talking to the carers again today about it, get them to show me how they do it, but I am seriously sticking to my guns about the chair. She has months left, she should be left with some dignity as opposed to being manhandled.

    Will let you know how it goes, the thing is the home are actually agreeing with me and if it hadn't been for this other bloody doctor we wouldn't be having this issue.
  8. Neph

    Neph Registered User

    Jan 27, 2014
    Oh it just gets better, my mum isn't drinking much now as she doesn't like the stuff they are using to thicken the drinks. Hey ho, will be making a few calls on Monday.
  9. jimbo 111

    jimbo 111 Registered User

    Jan 23, 2009
    North Bucks
    I agree with Jennifer , a ‘sippy cup ‘ should be ideal for your mum
    My wife suffering from AD. had ‘essential tremors ‘ and in the later stages could not possibly hold a cup or take sips
    I got her a sippy cup that looked reasonably like a picnic mug ‘( she wouldn’t tolerate one of those with multicolour’s or baby pictures)
    She akso suffered with a restriction in her throat that
    made drinking very difficult
    The ‘sippy cup ; was a Godsend after so many accidents and refusals to drink
  10. Neph

    Neph Registered User

    Jan 27, 2014
    We've tried a sippy cup and she just pushes the spot out of her mouth with her tongue.
  11. jimbo 111

    jimbo 111 Registered User

    Jan 23, 2009
    North Bucks
    Is it worth persevering ????????
    Another tact that used to have some success ( but very tedious) was to use a table spoon to sip small amounts , but it did at least get some liquids inside her
    Hope things improve
  12. sistermillicent

    sistermillicent Registered User

    Jan 30, 2009
    Try asking for another doctor to come and see her, she/he can surely overide the original doctors opinion, but try not to say how wrong the other doctor was, instead go along the lines of how your mum is now not able to tolerate being moved, as if it was something new.
    Devious but it might get the order to stimulate revoked.

    Doctors are not gods, when will some of them realise this.
  13. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    Q: What is the difference between doctors and God?

    A: God does not think he is a doctor.

  14. BR_ANA

    BR_ANA Registered User

    Jun 27, 2012
    #14 BR_ANA, Feb 15, 2015
    Last edited: Feb 15, 2015
    Straw can be dangerous. Aspiration pneumonia can lead to weeks on hospital and worse quality of life.

    Bed bound residents need to be moved every 2 hrs to avoid pressure wounds. Night and day. Mobility is important for quality of life too.

    Editing: I would check how CH staff move your mother. I know my mother prefer a strong staff lifting her from/to bed/sofa/wheelchair than the "right technique" of pulling linens (forgot word :fabric we sleep over). Gave her more dignity and quality of life.
  15. Neph

    Neph Registered User

    Jan 27, 2014
    #15 Neph, Feb 15, 2015
    Last edited: Feb 15, 2015
    Thing is her doctor is brilliant, it wasn't her usual doctor that came to see her, so am wondering about giving her a call as she has been very understanding.

    Jimbo must admit that is the only other suggestion I could come up with was to use a spoon, will see how they are doing tomorrow when I go down to see her.

    BR_ANA I know mum needs to be moved, she is every two hours and after nearly two years of being bedridden she has no pressure sores, has a proper pressure mattress and seems to be comfortable, staff are not allowed to lift her, due to health and safety and I understand that completely, she doesn't like the hoist and as she has to be weighed weekly we've all seen how much she doesn't like it.

    To be honest she wouldn't be admitted to hospital if she did develop aspiration pneumonia and I still feel that the only enjoyment she had, she loved her drinks, has been taken away from her, we are persevering with her and the sippy cup but am going to ask SALT to re-assess as soon as possible.
  16. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Neph, IMO that all sounds really sensible
  17. Neph

    Neph Registered User

    Jan 27, 2014
    Thank you Canary, I'm not one to start screaming at people that they are doing it wrong, but would rather them show me how to do it right, which should enlighten them as to how they are doing it wrong (if you get what I mean).
  18. LYN T

    LYN T Registered User

    Aug 30, 2012
    Brixham Devon
    Good tactic:) Towards the end of his life Pete was much more comfortable in bed. The Carers were only getting him up for meals-the movement just exhausted him.

    Re the sippy cup; I used to put the tiniest bit of honey round the spout. Pete loved honey and he managed to drink the fluid by sucking the honey:) Worth a try with something similar? I did the same by putting a bit on a spoon when his drinks were thickened.
  19. Neph

    Neph Registered User

    Jan 27, 2014
    Ooh the honey sounds like a good idea.
  20. Neph

    Neph Registered User

    Jan 27, 2014
    Well I called both the OT and the SALT team and left messages and guess what, no-one came back to me, so I rang her doctor, told her all my concerns and issues and she said she would talk to both of them and let me know what was happening as she had not been updated. She was quite surprised that no-one had spoken to me as she knew I'd asked to be present at any assessment. Will see where we go from here.

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