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Thread: Help: Caring for my mother

  1. #51
    Grand Master markrlondon's Avatar
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    Quote Originally Posted by davidj54 View Post
    Hi OP. I’m an Advanced Clinical Practitioner working in community services.

    Firstly you need to iterate to your GP that your mother is needing care in bed. This creates all manner of risk from pressure and moisture damage to moving and handling issues for you and other carers. More so, a sudden and acute
    bout of back pain needs reviewing it could be an exacerbation of her arthritis in which case her pain meds will need revising, or it could be an acute infection such as a UTI that’s impacts the kidneys.

    In your community there will be community nursing services that have links to physio and occupational therapy. The GP should be able to refer up to them for a home assessment of her mobility and activities of daily living needs. It varies from area to area, but generally speaking NHS services can provide home support and rehab (with equipment) temporarily to get a person back to baseline, usually over a period of 6 weeks; if full rehab can’t be achieved they will allocate a social worker who can review for a long term package of care via social services. These are financially assessed.

    So in summary

    1. Speak to your GP to stress how unwell you believe your mother to be.

    2. Via your GP, request a home assessment by the district nursing service. Enquire with them about home physio and occupational therapy.

    3. If you GP won’t refer, find out how to self refer.

    4. If you have no success down the health route, you can make a self referral to adult social care in your area - just google it and there will be a self referral number online.

    Unfortunately due to the Covid19 situation the response time of GPs and social services in particular isn’t great, which is why I would direct you to community nursing and therapy services.
    Thanks for this reply.

    We have already tried to explain these issues to the GP but he/they seem only vaguely to understand. He focussed "on her pain meds will need revising" this bit and ordered blood tests (to be done on Thursday) to establish kidney function with a view to moving her onto Allopurinol. This is probably necessary but, as you can see, it is only part of the issue.

    The sudden change in my mum's condition needs investigation in itself, and the GP seems holy unwilling to come out and do that. I don't think that a telephone consultation is capable of establishing what needs to be done.

    We have in fact attempted to speak to the district nurses (who normally come every 12 weeks or so to change my mum's urinary catheter) but they will only act on the basis of a referral from the GP. There is no other option, apparently.

    It does seem that the only way out of this impasse (unless the GP is more helpful when he/she eventually calls today) is to go back to social services or to call 999.

    There is also the suggestion made earlier in this thread to call and demand to speak to the GP practice manager but I now doubt that that will help at all.

  2. #52
    Grand Master markrlondon's Avatar
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    Quote Originally Posted by Chris_in_the_UK View Post
    I suspect this is not going to get stuff sorted properly - good luck.
    Indeed. :-(

    I was hopeful yesterday evening. Now I'm losing hope again.


    Thank you to everyone who has commented here. You've given me some great advice. If only the system worked as it was supposed to.

    One thing I can say is: If you have any dealings with care packages or looking after someone, or you are the person who needs help, then it is critical to keep in touch with all your contacts regularly: GP, social services, OT, district nurses, etc. Make sure they all know how things are. Do NOT tell them that everything is fine or you're coping (even if you are) since they will lose interest. Both my mum and I made this mistake.
    Last edited by markrlondon; 5th August 2020 at 10:19.

  3. #53
    Grand Master AlphaOmega's Avatar
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    ^I have a close relative who sounded in control of his wife's condition, wasn't, and things went downhill quickly. He was so calm and collected that her case wasn't prioritised.

    Meanwhile, those screaming for help with less serious matters were supported.

  4. #54
    Grand Master markrlondon's Avatar
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    Quote Originally Posted by AlphaOmega View Post
    ^I have a close relative who sounded in control of his wife's condition, wasn't, and things went downhill quickly. He was so calm and collected that her case wasn't prioritised.

    Meanwhile, those screaming for help with less serious matters were supported.
    This.

    I think I'm reaching the end of what I know how to do to get attention. I need someone who can scream and shout for me and for my mum.

    This may sound odd (or not, if you know me from here) but I think I lack the emotional apparatus to know how to scream and shout. Too autistic.

  5. #55
    Grand Master Saint-Just's Avatar
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    Mark

    You are overwhelmed and unfortunately wasting valuable time in your desire to do your best.
    If a doctor who deals with critical emergencies every day like Helidoc can lose perspective, you have no chance of getting yours right.
    Call 999 now.
    'Against stupidity, the gods themselves struggle in vain' - Schiller.

  6. #56
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    Don't mess about, if your mum had had a significant change in her condition (which it seems she has) then you need to call 999 and get her in to hospital now. Everything else will flow from that as she will then be 'in the system' and should not be discharged without a 'patient centered care' plan in place.
    A care home is a last resort and it sounds like you are just at the start of the 'journey' so don't worry about that now. I assume you are claiming for carers allowance and any other benefits allowed? If not do so immediately as this will also give added leverage and investigation into your mums ailments.

  7. #57
    Grand Master markrlondon's Avatar
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    Quote Originally Posted by julian2002 View Post
    I assume you are claiming for carers allowance and any other benefits allowed? If not do so immediately as this will also give added leverage and investigation into your mums ailments.
    Regrettably not. In order for me to claim Carer's Allowance my mum ideally needs to be claiming Attendance Allowance. She has been eligible for this at either lower or higher rate since at least 2003 (yes, 17 years) but has refused to claim it or even discuss it with me. Yes, that's about £30,000-£60,000 thrown away which we, quite frankly, desperately needed.

    Only now, in the last week, has she agreed that the time is finally right to claim Attendance Allowance. She finally seems to have that she really does need help. I have a partly complete AA application form on my desk but I've not given it the attention it needs.

    Yes, I am fighting my mum as well as the system (although I think my mum is now frightened enough about her sudden change to be more co-operative).
    Last edited by markrlondon; 5th August 2020 at 12:03.

  8. #58
    Grand Master AlphaOmega's Avatar
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    Ok, can everyone stop posting.

    Mark, call 999, then revert and tell us you have done this.

    They will judge whether an ambulance is needed.

  9. #59
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    Mark

    As you are the forum's undisputed master of multi quoting :-) perhaps this will help:

    Quote Originally Posted by jwg663 View Post
    The first thing to do is phone an ambulance. Now.
    Quote Originally Posted by RABbit View Post
    She may well need proper investigation so it would be appropriate to get an ambulance.
    Quote Originally Posted by bobc View Post
    I would'nt take any risks. Dial 999 and if it turns out to be curable/ manageable then great. You can then have the conversation about her long term care. I really would not delay.
    Quote Originally Posted by village View Post
    I would echo the suggestions already made to call an ambulance on the grounds already stated.
    Quote Originally Posted by Michael 38 View Post
    I would ignore the gp and get your mum into hospital as has already been said she will have a proper check to see what’s wrong instead of you and your gps guessing
    Quote Originally Posted by helidoc View Post
    I understand reticence about calling 999, but it is hard for us to have perspective, I’m a doctor and with my mum, my perspective was shot.
    [...]
    There HAS to be a medical assessment if mum is off her baseline to exclude sepsis, dehydration etc. That should be a GP visit, but if confused, abnormally drowsy or feverish I would call an ambulance
    Quote Originally Posted by PhilipK View Post
    If the doctor doesn't turn up shortly, then you really do need to call 999. Your mother requires urgent qualified medical attention.
    Quote Originally Posted by Chris_in_the_UK View Post
    Dial 999 mate - explain the issue and the sudden deterioration, the Paramedics will assess etc. and you will get the correct stuff in place for your mum.
    Quote Originally Posted by Saint-Just View Post
    Call 999 now.
    Quote Originally Posted by julian2002 View Post
    Don't mess about, if your mum had had a significant change in her condition (which it seems she has) then you need to call 999 and get her in to hospital now.

  10. #60
    Master helidoc's Avatar
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    Hi Mark

    Your mum needs a face to face GP review at home today

    When you speak to them I would reinforce the following:
    She is frail, immobile and off her baseline
    He oral intake isn’t adequate and you are concerned about dehydration

    There initial consult will be phone, but they will follow that with a face to face visit. I would be frankly astounded if they came out with any other option. If you get any pushback demand, it’s a patient safety matter

    When our GP came, and the medically qualified son (me) thought things were not THAT bad, the doctors response could have been interpreted as WTF, seriously?

    Do feel free to pm if I can be of any help

    Very best

    Dave


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  11. #61
    Grand Master AlphaOmega's Avatar
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    Heli, can you give Mark some guidance on what to say to emergency services, how to handle the call. I think this would help him make it.

  12. #62
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    This is the ear thermometer I have and is very good. I should have provided this last night as I know you have ordered one now, but in case it does not work out.

    Also remember to order several additional packs of the probe covers.


    Braun Thermoscan 7 IRT6520 Thermometer https://www.amazon.co.uk/dp/B00NVMIO..._8aOkFb956A5H8


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  13. #63
    Grand Master markrlondon's Avatar
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    Progress update:-

    Don't have time to say more right now but an assessment team is on their way. Called in by GP. They will be here in a "few hours". Have spoken to them on phone and they seem to be switched on.

    Thank you to GP for this. He was useful after all.

    There is no point my calling 999 now.

    (It is worth noting that the assessment team are now likely to arrive before any 999 ambulance response could or would arrive anyway.)
    Last edited by markrlondon; 5th August 2020 at 11:56.

  14. #64
    Grand Master markrlondon's Avatar
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    Thanks to everyone who have been urging me to call 999. It was what I'd have tried next (in consultation with social services) if the GP hadn't referred my mum to the assessment team.

    The assessment team is based at Northwick Park hospital, in case anyone knows anything about them. (I've been there before for my own medical needs and didn't like it much, but any port in a storm).

    Quote Originally Posted by helidoc View Post
    Hi Mark

    Your mum needs a face to face GP review at home today

    When you speak to them I would reinforce the following:
    She is frail, immobile and off her baseline
    He oral intake isn’t adequate and you are concerned about dehydration

    There initial consult will be phone, but they will follow that with a face to face visit. I would be frankly astounded if they came out with any other option. If you get any pushback demand, it’s a patient safety matter
    Thanks. Yup, this is essentially how it went. I effectively said those things to the GP and they were what prompted him to refer to the assessment team. I've spoken to the team on the phone and they took a brief history. They are due here in "a few hours".

    Quote Originally Posted by helidoc View Post
    When our GP came, and the medically qualified son (me) thought things were not THAT bad, the doctors response could have been interpreted as WTF, seriously?
    I will be particularly interested to get their opinion about the lymphoedema redness.

    Thermometer on its way for delivery today. Whether or not it gets here before the assessment team, we'll get a temperature reading and see if my mum does have a temperature.

  15. #65
    Grand Master AlphaOmega's Avatar
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    Ok Mark, so long as you and heli are aligned, and so long as you're confident the appropriate medical services know that the current set-up isn't tenable, then that sounds like you're in a better position.

    The key takeaway is to defer to professionals wherever you can rather than taking on an increasing burden.

  16. #66
    Grand Master markrlondon's Avatar
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    Quote Originally Posted by AlphaOmega View Post
    Ok Mark, so long as you and heli are aligned, and so long as you're confident the appropriate medical services know that the current set-up isn't tenable, then that sounds like you're in a better position.
    It seems that things are moving. The assessment team know the current situation and will (hopefully) be here soon. We'll see what their assessment brings.

    Quote Originally Posted by AlphaOmega View Post
    The key takeaway is to defer to professionals wherever you can rather than taking on an increasing burden.
    Yes, indeed. I must resist the urge to say "I can do that" or words to that effect. I can't any more.

  17. #67
    Master village's Avatar
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    It’s good news that you have an assessment team due to visit.
    Assuming they turn up soon make sure that you do not intimate in any way that you can cope. Be very clear that your mum (and you) need help and that you need it now....not tomorrow,not next week but now.

    If they don’t turn up then call 999.

    Good luck.

  18. #68
    Grand Master markrlondon's Avatar
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    Progress update:-

    The assessment team came today and did a medical assessment initially. My mum's temperature is normal and they've taken bloods and urine for testing. Uncertain about whether or not it is cellulitis or dermatitis on the lymphoedema though, as yet (although that's a side issue compared to my general mum's lack of mobility).

    We still do not have a clear (well, any) explanation as to the sudden loss of mobility. I suspect (but we'll see) that the bloods and urine will show nothing terribly untoward, which would still leave an unexplained sudden loss of mobility and increase in back/shoulder pain.

    I'm personally willing to believe that the new back/shoulder pain that was associated with the sudden loss of mobility is a new spread of arthritis or gout. But, if so, it was remarkably sudden.

    The team (a different part possibly) is coming back at some point tomorrow to carry out care package assessment. Which of course is critical to life going forward.

    The team who came are a NHS team called STARRS, which is the 'Short-Term Assessment, Rehabilitation and Reablement Service' based at Northwick Park Hospital. Their remit is get people, especially the elderly, out of hospital earlier or keep them out of hospital.

    This does seem to be actual progress. I'm still stuck with moving my mum around until a new care package is in place and I am still dreading the result of the first evacuation of her bowels (sorry, tmi I know!) but we're getting there.

    Calling 999 would have been an alternative had the assessment team not turned up but I am glad it was avoided: It would have been even more disruptive and stressful, I think, albeit perhaps in different ways.

    It will be interesting to see how long it takes for a new care package to be put in place and (horrors) how much it's going to cost.


    Thank you to everyone who has commented. You've all been a truly invaluable source of support, knowledge and experience.
    Last edited by markrlondon; 5th August 2020 at 16:27.

  19. #69
    Grand Master AlphaOmega's Avatar
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    I'm glad things are improving.

    Don't forget the risk you took today in not calling 999 though - that could have been a mistake even though it wasn't.

    I sympathise with you as it's easy to post a message and less easy to act when you know the disruption and stress it will cause.

  20. #70
    Grand Master markrlondon's Avatar
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    Quote Originally Posted by AlphaOmega View Post
    Don't forget the risk you took today in not calling 999 though - that could have been a mistake even though it wasn't.

    I sympathise with you as it's easy to post a message and less easy to act when you know the disruption and stress it will cause.
    Yes, it was a risk to not call 999. But then my mother would have been very highly stressed by being carted off to hospital so it had its downsides. It was something to avoid unless absolutely necessary. Happily, luckily, it was not necessary.

    Of course, we're not fully out of the woods yet, so a 999 call might still happen.
    Last edited by markrlondon; 5th August 2020 at 18:41.

  21. #71
    Grand Master markrlondon's Avatar
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    Progress update:-

    999 happened.

    Just had a called from the assessment team (STARRS) and the blood results showed significantly elevated infection markers and malfunctioning kidneys. Mum needs to go to hospital now. STARRS have called 999 on our behalf.

    The fact that my mum has no unusual temperature is surprising but her having an infection fits and I am not surprised at kidney malfunction considering how little she has drunk in the last week or so.

    Her reaction when I said she needed to be admitted to hospital was awful. She is dreading being in hospital and I can't blame her.

    Off to prepare stuff to take now.

  22. #72
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    Wishing your Mum and yourself Mark all the best.

  23. #73
    Grand Master JasonM's Avatar
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    Good luck Mark.
    Cheers..
    Jase

  24. #74
    Master helidoc's Avatar
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    Ok

    The kidney thing (AKI) usually improves with rehydration, treating infection, and stopping drugs that stress the kidneys

    The most important thing is that your mum will get better, and the team will have the time to assess her care needs, which will include ensuring equipment at home and the package of care is right

    You have handled this crisis very well, it must have be hard.

    Very best

    Dave


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  25. #75
    Grand Master AlphaOmega's Avatar
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    Quote Originally Posted by helidoc View Post
    You have handled this crisis very well, it must have be hard.
    +1

    Well done Mark.

    And it's a pleasure to share a forum with people like you, Dave.

  26. #76
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    Quote Originally Posted by markrlondon View Post
    Progress update:-

    999 happened.

    Just had a called from the assessment team (STARRS) and the blood results showed significantly elevated infection markers and malfunctioning kidneys. Mum needs to go to hospital now. STARRS have called 999 on our behalf.

    The fact that my mum has no unusual temperature is surprising but her having an infection fits and I am not surprised at kidney malfunction considering how little she has drunk in the last week or so.

    Her reaction when I said she needed to be admitted to hospital was awful. She is dreading being in hospital and I can't blame her.

    Off to prepare stuff to take now.
    Best wishes Mark - I suspected all along that this would be the best course of action.
    When you look long into an abyss, the abyss looks long into you.........

  27. #77
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    Quote Originally Posted by AlphaOmega View Post
    +1

    Well done Mark.

    And it's a pleasure to share a forum with people like you, Dave.
    +1

  28. #78
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    Great, although hosp visit not ideal, it’s the best place for mum at the moment. She will be well looked after and assessed and any illnesses addressed and you will get a very needed break.

    Make sure they do not release her home prematurely. When the markers look better but not 100% normal they may send her home to complete treatment at home such is the pressure on beds and statistics.

    This happened with my mother several times and was back in hospital soon after.

    Challenge them and keep her in as long as possible. They cannot release mum if home is not geared up for her return, I.e, your not ready or care package not in place.


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  29. #79
    That was quite the read

    good luck with it all

  30. #80
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    There are others more qualified to comment but now she is in hospital don't be bullied into saying that you can care for her so they release her back into the same situation you were in yesterday. I'd suggest you be quite insistent that you cannot cope on your own & that you need both equipment & nursing assistance on an ongoing basis before she comes home.

    It will be hard & the temptation is to get your mother out of hospital where she doesn't want to be but in the long run it will be much better for both her & you that you be a bit arkward at this point so that you get whatever help is available. You need to be the squeaky wheel.

    Good luck & I hope the situation improves.

  31. #81
    Master PhilipK's Avatar
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    Quote Originally Posted by markrlondon View Post
    The assessment team is based at Northwick Park hospital, in case anyone knows anything about them.
    Quote Originally Posted by markrlondon View Post
    The team who came are a NHS team called STARRS, which is the 'Short-Term Assessment, Rehabilitation and Reablement Service' based at Northwick Park Hospital. Their remit is get people, especially the elderly, out of hospital earlier or keep them out of hospital.
    I've had some experience of the STARRS team at Northwick Park. An elderly relative, now in a care home but at the time living on her own was in a bad way (combination of dementia, a UTI, dehydration and malnutrition). By the time we found out and got to her, it was a 999 case. The STARRS team were very good, and did not let her be released (despite pressure from the hospital to get the bed back) until there was a clear plan in place for her.

    I think your mum is in good hands.

    Don't forget to look after yourself as well. You'll be no use to your mum if you don't stay healthy, and you've been through a stressful and difficult time! Perhaps now is the time to start looking for a new watch :-)



  32. #82
    Grand Master markrlondon's Avatar
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    Progress update:-

    Ambulance been and gone. It came much, much quicker than I was expecting. Was expecting a multi-hour wait. Rushed around and collected things for mum to take to make her happy, even though she won't need most of them.

    It hadn't occurred to me that I could not go with her under current circumstances. Oops, I should have thought of that. It makes no practical difference anyway as I'd only have been there until she was settled in and then come home.

    Ambulance crew were very, very good. Very patient, very friendly.

    Did I mention that my mum has diabetes too? Her blood sugar was 6, which is very good. And very low for someone with an infection. Let's hope the infection can be treated quickly.

  33. #83
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    Pleased everything is looking positive Mark - have something to eat and maybe a glass of wine and get yourself an early night and plenty of rest. You have the opportunity to recharge your batteries ready for when your mum comes home ☺️

  34. #84
    Grand Master markrlondon's Avatar
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    Thanks for your kind comments, everyone.

    A few responses...

    Quote Originally Posted by helidoc View Post
    The kidney thing (AKI) usually improves with rehydration, treating infection, and stopping drugs that stress the kidneys
    Yes, I'm hoping so. It pleasantly surprised me that she has the blood infection markers but a normal temperature and blood sugar of only 6. Hopefully those are goods signs.

    As you also say, this will result in a new care package being put in place which will be a huge relief, hopefully.

    Quote Originally Posted by CatalystGuy View Post
    She will be well looked after and assessed and any illnesses addressed and you will get a very needed break.

    Make sure they do not release her home prematurely. When the markers look better but not 100% normal they may send her home to complete treatment at home such is the pressure on beds and statistics.
    I suspect it is helpful that she was admitted due to STARRS's assessment. Whilst they are based at Northwick Park and she has gone somewhere else, there hopefully should be pressure to not release her until she is capable and a new care plan is in place.

    Quote Originally Posted by CatalystGuy View Post
    They cannot release mum if home is not geared up for her return, I.e, your not ready or care package not in place.
    Quite so.

    I have some experience of pushing back against 'premature hospital ejection' and I don't think it will be a problem this time.

    Quote Originally Posted by Mr Pointy View Post
    There are others more qualified to comment but now she is in hospital don't be bullied into saying that you can care for her so they release her back into the same situation you were in yesterday. I'd suggest you be quite insistent that you cannot cope on your own & that you need both equipment & nursing assistance on an ongoing basis before she comes home.
    Yes indeed. I very much hope that the STARRS people will still be involved since they seemed clued up on how to organise/supervise a care package and liaise with relevant councils. We'll see.


    Quote Originally Posted by PhilipK View Post
    I've had some experience of the STARRS team at Northwick Park. An elderly relative, now in a care home but at the time living on her own was in a bad way (combination of dementia, a UTI, dehydration and malnutrition). By the time we found out and got to her, it was a 999 case. The STARRS team were very good, and did not let her be released (despite pressure from the hospital to get the bed back) until there was a clear plan in place for her.

    I think your mum is in good hands.
    Interesting experience. Although the STARRS team is based at Northwick Park, because of our location there are other much closer hospitals and she's gone to one of those. I hope STARRS can still remain involved, even though the hospital she has gone to is in a different Trust. Time will tell.

    Quote Originally Posted by PhilipK View Post
    Perhaps now is the time to start looking for a new watch :-)
    I rather think I should be selling some, actually. :-)

  35. #85
    Grand Master Griswold's Avatar
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    Best wishes for your Mum Mark. Fingers crossed for her. I have some idea of what you're going through as I had similar with both my Mum and my Dad. When it gets to their age they 'don't want messing around with' to quote my Mum. She was, of course, completely wrong; but as a 'child' you find it hard to put your foot down and argue for what you knowe's best for your parents!

    She's in the right place now, hoping her treatment goes well.
    Best Regards - Peter

    I'd hate to be with you when you're on your own.

  36. #86
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    She’s in the best place for her and you. Things will improve

    My heart goes out to you Sir

  37. #87
    Grand Master hogthrob's Avatar
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    Mark

    It's good that your mother is receiving the care she needs.

    Take this time to have a good look at your personal situation and ask yourself if you can continue properly look after your mother. It sounds like you have significant challenges of your own. If you were to have a health issue, who would look after your mother? You also mentioned that you feared becoming homeless if your mother passed away. I don't wish to be morbid, but you need to plan for that eventuality.

    You mentioned that you have autism. Is talking to people face to face, or on the phone as issue for you, particularly when it comes to being insistent? I'm not asking as a criticism, but because it would be a pertinent factor.


    Apologies if I have mis-interpretted anything.

  38. #88
    Master pacifichrono's Avatar
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    Mark, my heart goes out to you and your mum. Despite much 'drama,' you've reached the right place to care for your mum at this stage. I'm certain the experts now helping you will be able to assist in navigating the best course for both your mum and yourself. Best wishes..my prayers go with you.

  39. #89
    hopefully your mom will make a speedy recovery , going back to you mentioning that you have persuaded you mom to claim attendance allowance - personally i would not fill in the forms yourself as they look for specific keywords when awarding (for instance using the word 'sometimes' to denote being able to do something , once you put that they auto class it as 'can do' - the paperwork will need to contain a lot of 'unable' and 'cannot' )- lots of people make this mistake when filling the form in (it needs to be filled in on a worse day scenario)

    do a google search and look for your local welfare rights and they can help you to fill the form in , they usually do home visits and fill them in front of you but because of covid im not sure how it is working at the moment - this will also take the pressure off you worrying if you got it right.

    attendance allowance is not means tested - which means it does not matter how much money you have (savings/property) - you can still claim it and it wont affect any other benefits.

  40. #90
    Mark - my thoughts are with you and your mum as well. I have a little experience of your situation when my dad was at home following an operation that threw up some pretty horrible side effects. Although nurses came to clean him it was my mum who was basically the full time carer and I could see this taking its toll on her. My dad passed away two years ago but my only advice would be to not try to cope with caring for her if this means using a hoist or if she is not able to get back the mobility she had before, especially with your conditions. The other thing which people have mentioned is to resist the hospital trying to release your mum before she is ready - for my dad's situation this happened on more than one occasion. Your mum is in the best place to receive treatment and get back to the baseline as she was before.

  41. #91
    Grand Master Neil.C's Avatar
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    Glad to hear your Mum is in hospital Mark - best place for her.

    In the respite perhaps take a little time to think about yourself?

    All the best.
    Cheers,
    Neil.

    My Speedmaster website:

    http://www.freewebs.com/neil271052

  42. #92

    Help: Caring for my mother

    Quote Originally Posted by pacifichrono View Post
    Mark, my heart goes out to you and your mum. Despite much 'drama,' you've reached the right place to care for your mum at this stage. I'm certain the experts now helping you will be able to assist in navigating the best course for both your mum and yourself. Best wishes..my prayers go with you.
    +1. I echo these words. Thoughts and prayers.
    Last edited by Mr Tetley; 6th August 2020 at 19:27.

  43. #93
    Hi Mark good to hear your mother is getting the assessment she needs. Also great that you can come on here and share and get some additional advice and support. I have at the back of my mind the two words “Care Plan”, and the guys and girls here who are experts will help you more than I can. I think that when your mother is finally discharged there must be an agreed care plan in place. The content will be critical going forward.

  44. #94
    Grand Master markrlondon's Avatar
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    Thanks for everyone's kind and helpful comments.

    Several people said similar things and I'm replying to hogthrob's message below with a view to covering everyone else's comments and queries.

    Quote Originally Posted by hogthrob View Post
    Take this time to have a good look at your personal situation and ask yourself if you can continue properly look after your mother.
    It depends on the care package that is put in place. As long as it is adequate (and it will need to be far more complete than we were able to get away with up to last week) then it will be ok.

    Although both local council and hospital NHS occupational therapists are already involved, it isn't yet clear what sort of mobility my mum will leave hospital with (or when she will leave hospital) and so the net care package needed isn't yet clear. However, it is obvious to me at least that it will require significant human resources for toilet functions and washing/cleaning, getting dressed/undressed, etc.

    I hope (and strongly suspect) that the OTs understand this. I hope that before my mum leaves hospital I shall have a chance to speak to them to establish that what they plan to put in place is practicable.

    Quote Originally Posted by hogthrob View Post
    It sounds like you have significant challenges of your own. If you were to have a health issue, who would look after your mother?
    This is a good question and there is no single, simple answer. Even with an adequate care package in place this would still be difficult. Pass, for now.

    Quote Originally Posted by hogthrob View Post
    You also mentioned that you feared becoming homeless if your mother passed away. I don't wish to be morbid, but you need to plan for that eventuality.
    The issue is if my mum needs to move permanently into a nursing home. In that case, her property (the family home in which I live) would need to be sold to pay for the nursing home. Thus I would be made homeless, I would have nowhere to store my personal belongings, and our cats would be homeless too.

    If my mum was to die at home, in hospital, or during a temporary nursing home stay then I'd inherit the family home as one would normally expect.

    See #25 for where I commented on this.

    Quote Originally Posted by hogthrob View Post
    You mentioned that you have autism. Is talking to people face to face, or on the phone as issue for you, particularly when it comes to being insistent? I'm not asking as a criticism, but because it would be a pertinent factor.
    To be honest it is an issue. I'm certainly not totally incapable but I have come to realise in the last couple of years that it has handicapped me throughout my life. It's been far, far more of an issue than I realised at the time (and by "at the time" I really do meaning throughout my life). This difficulty has been particularly brought home to me just recently as I have reached the absolute limits of what I was able to do.
    Last edited by markrlondon; 7th August 2020 at 14:54.

  45. #95
    Grand Master markrlondon's Avatar
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    Progress update:-

    Mum is still in hospital. She was admitted on Wednesday afternoon, made it out of A&E and onto a ward at some point on Thursday morning, and has been on the ward since then (so has been on the ward the whole of Thursday, Thursday night, and so far today).

    She has had a kidney x-ray and ankle x-ray, for what they are worth.

    The good news is that they now think that she does NOT have a kidney infection. Well, that's good.

    But it still begs the question of what caused her mobility to so suddenly reduce near he beginning of last week (and then reduce again on Friday/Saturday last week). I have impressed upon my mum the need to ask questions until she gets answers she understands. I shall try to make contact with staff today and find out more.

    She has seen occupational therapists but it is still too soon to know what mobility mum will have on being discharged.

  46. #96
    Grand Master AlphaOmega's Avatar
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    For phone calls, it might help if you have a script and stick to it, Mark.

    Write down what you'd like to say in advance. Limit yourself to direct, clear instructions of no longer than 20 words. Imagine you only have a few seconds to deliver each sentence.

    Then don't say anything apart from what is on the script.

    I use this technique in some of my posts.

  47. #97
    Grand Master markrlondon's Avatar
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    Quote Originally Posted by AlphaOmega View Post
    For phone calls, it might help if you have a script and stick to it, Mark.

    Write down what you'd like to say in advance. Limit yourself to direct, clear instructions of no longer than 20 words. Imagine you only have a few seconds to deliver each sentence.

    Then don't say anything apart from what is on the script.

    I use this technique in some of my posts.
    Thanks. That's a good strategy.

    It might come as a surprise given my common verbosity on here but I do in fact do something along those lines. A coping mechanism I guess.

    I have come to realise that my verbal presentation is quite odd, rather fast and staccato. I should learn to speak m-o-r-e s-l-o-w-l-y.

  48. #98
    Grand Master markrlondon's Avatar
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    Progress update:-

    I spoke to the nurse in charge and she confirmed that Mum does not have a kidney infection and will be staying with them over weekend. She will be seen by physiotherapist and will have an ankle x-ray (or scan, not sure). I asked specifically if they knew why my mum's mobility suddenly decreased and the answer was "we are still investigating at the moment".

    So there we are so far.

    I suspect that we'll never find out exactly why my mum's mobility so suddenly reduced. It is possible, I think, that she did have a brief infection from which she was recovering on her own. Even if correct, this doesn't alter the need for a re-assessment of the require care package.

  49. #99
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    Quote Originally Posted by Alansmithee View Post
    So here is the hard truth - because you are acting as a carer, very little will be done unless you actually create a crisis. if you really want to force the issue, you need to say (even if it's not true) that you cannot care for your mother anymore - you might need to contact social services and say it is an adult safe-guarding issue. They will then present to you as if you need to attend a lot of meetings, these are just to get you to agree to do stuff - don't go to any of them and stick to the line that you cannot care anymore - even tell them you plan to leave if you have to.

    This truthfully and honestly will get swifter action than anything else.
    Yes, that's it in a nutshell. However if you were shielding because you have a cough and think you might just possibly, maybe..... then the care people would have to take over wouldn't they? Whilst you are doing all the work you won't get the care people interested.

    Rob

  50. #100
    Quote Originally Posted by markrlondon View Post
    ...

    The issue is if my mum needs to move permanently into a nursing home. In that case, her property (the family home in which I live) would need to be sold to pay for the nursing home. Thus I would be made homeless, I would have nowhere to store my personal belongings, and our cats would be homeless too.
    ...
    I find it hard to believe this is true Mark. It’s your home, your family home. Perhaps someone with the right experience can chip in?

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