1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

Vent - setting Up new thread - MIL, SS, Self funding, GP

Discussion in 'I care for a person with dementia' started by daveyshadow, Aug 13, 2019.

  1. daveyshadow

    daveyshadow Registered User

    Jan 14, 2015
    30
    I have set this up as a new thread in the hope that it will help show the sheer number of people who are at their wits end as carer's of PWD.
    We all care "too much" and are hamstrung by the law which correctly allows people to make decisions about their health and well being, but does not really allow for as a previous post said "fluctuating capacity" . This dreadful disease leaves our loved ones to appear "normal" in short spurts (although I have noted that this is exhausting for PWD), whilst being anything but "normal" .
    MIL presses her emergency call button constantly, OPMH have said they can't medicate her anxiety anymore, SS won't step in as she is self funding and has carer's 4 times a day but won't consent to an assessment for safety at home, the emergency call providers have just given us 2 weeks notice that they will remove the equipment as it is "being abused" and taking their call staff away from genuine calls, SS have asked the GP to carry out a capacity assessment. She has only been MIL's GP for a couple of months following the retirement of her previous GP who had known for at least 20 years and could see through her, but the GP only works part time so I have just had to leave a message with the surgery asking for the assessment to be done as a priority, but probably won't be looked at now until lunchtime tomorrow, so that will be a day and half gone of the 2 weeks. As the emergency button is MIL's only means of contacting the outside world as she can't use the phone to phone out (macular degeneration) she will be distraught and even more anxious, if that is possible.
    She has refused constantly over the last 4.5 years that we have cared for her to engage in any sort of outside activity that would leave her less isolated - Age Concern, RNIB, her Care Providers, GP Surgery Memory Café etc.
    Not looking for advice, just relieved to have been able to vent in an environment where others will understand. She really would be better in a home, better care, not isolated, better food, quicker intervention for medical issues, no worries about stairs, clean clothes and hopefully clean in herself, but as she is still deemed to have capacity and will not even tolerate discussion of moving out of her home we are stuck in this groundhog day situation.
     
  2. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    5,472
    East Sussex
    I understand your frustration, my mum was also self funding, I phoned for some advice on what I could do, as I was woefully under qualified to take on a Carer role

    I was told that as a self funder I could “gaily go ahead and sort out whatever I wanted to” :eek: At 4.40 on a Friday afternoon I told her there was nothing “gaily” about it o_O I wanted to know where to gain the knowledge, not cash to action it with. She was stunned by my curt attitude

    Have SS said why they won’t do an assessment? I thought they had an obligation to do one every year, more frequently if there is a deterioration ?

    If you feel she wouId be safer in a Care Home, but can’t force the decision due to capacity and the right to make her own decisions. Maybe, you could remind SS that she is a “vulnerable adult” and the “duty of care rests with them” .. not you

    Ask them what wouId happen if you were unable to care for her for two weeks? WouId they still think she was safer at home?

    It’s a slippery slope, whereby you could find decisions made that you don’t like, so you’d need to be sure in your heart and mind that you are ok with it

    It’s such a hard thing to do, I wish you strength to deal with it :(
     
  3. daveyshadow

    daveyshadow Registered User

    Jan 14, 2015
    30
    Hi thanks for the reply, ideas and support. The lady at SS last week told me they would not currently step in until she was deemed not to have a capacity by her GP or had some kind of medical emergency such as falling down the stairs and required hospital treatment. Today the lady told me, we just need to sit and discuss this as a family with MIL, explaining "again" how we feel she would be with the better care available in residential care and wait for the GP to carry out the assessment in the meantime.
     
  4. Linbrusco

    Linbrusco Registered User

    Mar 4, 2013
    1,566
    Female
    Auckland...... New Zealand
    I’m not from the UK but have been a TP member for 6 yrs.
    It still amazes me how many of you caring for a PWD , and with all the various support agencies involved, carers, hospitalisations, and emergencies, that your Social Services deem the PWD to still have mental capacity.
    Mental Capacity to do what?
    Decide Yes or No that they don’t need help? Yes or No they don’t wish to go into care?
    What is required for SS to decide the PWD doesn’t have mental capacity?
    Is this all from a funding perspective?

    After 3 yrs of Mums Alzheimers, all it took was for her GP to asses her for mental capacity. He had seen and heard enough to decide she didn’t in his professional opinion.
     
  5. TNJJ

    TNJJ Registered User

    May 7, 2019
    154
    Hi.I have SS coming in tomorrow to access dad as he has got worse,with his memory and motor skills.(I haven’t told him)I need different equipment to help him when he cannot transfer etc.As you know there are more bad than good days.But,apparently they cannot say he doesn’t have capacity only a GP can do that.So,here we go tomorrow.I won’t get any new equipment as dad will say “No” so that will be the end of it.He has VD and is a good host..No wonder we all get fed up with the capacity being fluid!
     
  6. Banjomansmate

    Banjomansmate Registered User

    Jan 13, 2019
    976
    Female
    Dorset
    Even when SS agree that a person with dementia lacks capacity to make good decisions they are still tied by the Mental Health rules. Even though everybody agreed that The Banjoman needed to go into residential care, because he was in hospital and refused to go it could well have been taken to The Court of Protection and SS sent an Independent Advocate to see him. Thankfully by that point his brother and s-i-l and I had persuaded him to agree to move into a Care Home listed by the local Council.
    Considering the problems we had I am always amazed when I read on here that people are moved into care without anybody throwing a spanner in the works quoting the Mental Capacity Act.
    https://forum.alzheimers.org.uk/threads/agreeing-to-moving-to-a-care-home.113747/
     
  7. TNJJ

    TNJJ Registered User

    May 7, 2019
    154
    #7 TNJJ, Aug 13, 2019
    Last edited: Aug 13, 2019
    Dad has been assessed as having some capacity by the GP but I don’t believe dad understands some of the repruccussions..Eg Asking for toast but choking on it.(He is on a soft diet)So looking forward to tomorrow.
     
  8. TNJJ

    TNJJ Registered User

    May 7, 2019
    154
    SS arrived today to assess dad.She had a good chat with him and me.Surprisingly,he was on good behaviour and explained that sometimes he had difficulty getting up from the toilet and walking with his gutter frame.I showed her the bathroom (you couldn’t swing a cat around it)She was understanding and so we are now having a wheeled commode to use over the toilet,rather than him using the Sara steady and him lowering himself.Less pulling and dragging for me with the Sara steady. We talked about a stand aid but are continuing as we are at the moment.She was watching dad quite intently ,especially as he was struggling with talking.I think she picked up on certain things ,especially when he said several times that he has been stuck in this chair for 6years(actually 18month!)...Along with the toast saga dad is still asking for toast .Carer said “He has capacity “I replied “It fluctuates “If you want to give him toast carry on .”Dad can ask for toast but would he understand he could choke.(He has a soft diet put on when he was assessed by SALT)Carer said “She would be liable if something happened.I told dad and said to him about it again,but I give up!
     
  9. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    290
    How can someone have capacity when they don’t understand the consequences of their actions
     
  10. TNJJ

    TNJJ Registered User

    May 7, 2019
    154
    .Hi! I often wonder that myself.People never think that just because someone says “Yes” it does not mean they understand they will choke.But,what do I know!Im only with him all day for 4days a week!
     
  11. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    290
    It’s very frustrating, but it also starts to become soul consuming I found. I am still struggling to not talk about Mum & Dad obsessively. The struggle to get help has left its mark, & depletion of energy.
    I feel that my life is on pause waiting for the next incident!
    Also life is a continual round of paperwork for Mum & Dad!!!
     
  12. daveyshadow

    daveyshadow Registered User

    Jan 14, 2015
    30
    @DesperateofDevon, Yes the soul consuming and life on pause is a feeling we can echo. Even on holiday we get calls. The GP called us in Lanzarote on our wedding anniversary in February and we had an incident we had to deal with from Bulgaria in July (whilst 21 and 23 year old daughters were on drips in the hotel medical centre with a nasty viral / bacterial infection!) and we only go away for a week as longer seems too much, despite the support of Tesco home delivery!
    Moving on with our situation, GP stepped up, phoned me at 9am Wednesday, went round at 1pm and carried out the capacity assessment. Then she phoned SS today and then called me back to let me know and that I should now call SS back and arrange for a best interests assessment. SS have now put MIL on waiting list for the assessment! Small steps (or shuffles as 21 year old calls them :) )
    Talking with OH last night he is really upset by all of this. He knows it would be in her best interests to move to residential care but it would also be against her wishes and this is where as you say comes the soul consuming, we are damned if we do and damned if we don't. OH is also concerned about the amount of extra pressure on us if she moves out of home as there would be a lot to do.
    But at least we have got somewhere. I am off now to set up another post re POA I need an answer to!
     
  13. LolaG1

    LolaG1 New member

    Jul 8, 2019
    7
    It’s all just a constant battle, it’s hard enough getting them to eat, drink, use the toilet, stay clean etc without all the endless paperwork and phone calls. I’m still struggling with my local council to arrange a council tax reduction even though we’ve had diagnosis for my Dad since last December. We’ve filled out forms and sent emails. They won’t actually speak to me on the phone as we are still waiting for lpoa to be confirmed. So far the easiest company to deal with was his mobile phone company when I cut off his contract for a pay as you go. They were brilliant.
     
  14. daveyshadow

    daveyshadow Registered User

    Jan 14, 2015
    30
    MIL's GP helped us arrange this for council tax
     
  15. LolaG1

    LolaG1 New member

    Jul 8, 2019
    7
    Thank you. My Fathers gp just told me to apply and that was it! He told me to look online.
     
  16. TNJJ

    TNJJ Registered User

    May 7, 2019
    154
    At the moment I only have dad's paperwork,but after speaking to mum today I think I will be dealing with her next.(heart failure and now mental issues).On a good note my carers assessment came through. Enough to join a gym and a few drinks! Maybe it could stretch to a one way ticket!!!
     
  17. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    290
    That made me laugh @TNJJ
     
  18. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    290
    Ring them up, ask for the forms to be sent out to PWD
    You can start filling them in - as Drs need to sign off on this.
     
  19. TNJJ

    TNJJ Registered User

    May 7, 2019
    154
    I'm feeling like that today.All I have heard from dad is "I'm bored!" I felt like replying " Me too! Of listening to this! "..He was given several suggestions of what we could do .The reply was the usual default "No"..! I felt like saying "Suck it up then "! I gave him his tea,stayed with him .Then ordered taxi and left..Thank heaven's for tomorrow and weekend off..He will be perfect for the carers.
     
  20. daveyshadow

    daveyshadow Registered User

    Jan 14, 2015
    30
    When we suggest anything to stop MIL isolation we get the phrase "I'll think about it" it has become a family joke now :)
     

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