In hospital - should we push for a diagnosis?

Discussion in 'Memory concerns and seeking a diagnosis' started by MargeS, Sep 8, 2019.

  1. MargeS

    MargeS Registered User

    Sep 1, 2019
    14
    My father in law is currently in hospital. We believe he has moderate dementia, but until now, he lived with his wife, and they declined any kind of investigation. My mother in law has passed away, and we wonder if we should push for a diagnosis whilst he is in hospital? He has apparently had a CT head scan, and is due to see the mental health team, so I'm not sure if this is something they might be intending to investigate fully, or whether he will be discharged back into the community without this.

    His GP had made a referral to the memory team prior to his admission to hospital, but he has yet to be seen by them.

    This is totally new to us, so any advice would be brilliant. We don't want to be pushy, but also, we haven't been able to access any support without any diagnosis, so it would be really useful for all of us. It's been like hitting a brick wall at every turn, when people find out he hasn't been diagnosed with dementia even though he has quite advanced cognitive impairment (in my opinion).
     
  2. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,062
    as the mental health team are involved.
    -Document all your concerns & give a copy to the hospital to be added to his file. - Talk to the ward sister, ask what they have observed while he’s in hospital.
    - Ask for a Discharge Plan Meeting so your concerns can be discussed ~ community nurse, Occupational Therapist, Social services/ worker, Discharge Nurse (& Ward Nurse ) are part of this & therefore everything is well documented.
    Hope that helps
     
  3. PsychicSnail

    PsychicSnail New member

    Sep 8, 2019
    8
    This could be a regional issue. Things are a bit different in the midlands. This is how it worked for me.

    The referral to the Mental Health Team started out as a visit from a Community Psychiatric Nurse (CPN). This visit was useless as all he asked was did we want a referral for a dementia assessment. Well of course we did, and we thought he would do it. But not so. At this moment my mum did a 180 and said she didn't wan to proceed. However...

    Next comes a second referral from the GP a few months later. I explain my mum's paranoid state etc and they do us a direct referral to the clinic instead, where we are promised that she will be assessed. I'm still awaiting this.

    Anyhow, during discussions with the CPN and GP there actually seems little value in having a diagnosis (although this may be dead wrong in reality). They say, although a bit harder, you are able to access all of the support services, advice and support groups without it. So I would be interested in knowing what services you have been unable to access.

    This is a bit off-topic, but I would advise against being a martyr here. If the hospital believe you are going to act as an unpaid carer and provide that support, then they will willingly discharge him into your care. But this is a terribly hard road to travel and not to be taken lightly.

    Lastly and further off topic, as your father in law is presumably still fairly lucid, make it a priority to get Lasting Power of Attorney for both finances and care. The forms are downloadable on-line and only take a couple of hours to sort out. They require you, your husband and one other individual to witness who has known him for five years (I think) and can attest to his, relative, stability. This will save you endless hassle later and potentially thousands in legal costs. The person only needs to be able to understand the repercussions of the decision they are making at that moment, not be able to recall it the next week. So the bar is (thankfully) fairly low.
     
  4. Lawson58

    Lawson58 Registered User

    Of course you should be pushy. Your FIL has every right to be assessed appropriately and receive treatment that will help him (and you) deal with whatever is ahead. And you and your family have no need to guilty about it, Countries like mine and yours are supposed to be socially responsible and care for those in need.

    Don't let anyone sidetrack you.
     
  5. canary

    canary Registered User

    Feb 25, 2014
    10,524
    Female
    South coast
    It sounds to me like steps are being made to get your dad a diagnosis.
    I think most of us have been frustrated about how long it can take , but it sounds like the wheels are definitely in motion.
     
  6. Caligirl

    Caligirl Registered User

    Dec 19, 2018
    44
    My Dad was in a similar situation last Xmas. Adult Social Care became involved as he lived alone and had no care plan as wasnt needed until his fall as we his family did everything for him. The Social Worker set up a Best Interets meeting which included us his family. My Dad failed the mental capacity test and had no LPA in place so we had to get a Deputyship Order. Does your Father in Law have an LPA?
     
  7. MargeS

    MargeS Registered User

    Sep 1, 2019
    14
    Thank you for your reply. We haven't had a very good experience with the Hospital Ward, who said he was medically "fine" and all they were doing was "babysitting" him. The ward sister said "he's independent" because he can get himself dressed, and have a wash without help. He can do this, but he has to be reminded to do it. He won't eat unless you put it infront of him, and can't remember that he has eaten 5 minutes later. It's not clear cut.

    They were planning to send him out with three times a day care, (which we were supposed to be looking for even though no one told us this was the plan), and even though he'd set fire to his fence, left the gas on (unignited), left the oven on full pelt (and found in his pants and socks and shoes by a carer), climbs in and out the window when he can't find his keys (every day), amongst other events, and this was with twice a day care. I explained this to several different people, who all wanted to know the "history", but then just seemed to ignore it.

    Social Services couldn't offer any advice as he is privately funded. The nurse in charge just said it is him being "in denial" of his wife's death, and takes 9 months to get a diagnosis, so that is not an option. (Even though this behaviour isn't really any different to what he has been displaying for a few years - he just had his wife caring for him 24 hours a day so he didn't get left to his own devices.). They also said he has full capacity to make his own decisions regarding going home, but bless him, I don't think he can make decisions about his own safety, as he isn't aware that he is doing these things, and obviously doesn't think he is unsafe, so I don't know where that leaves us.

    We just wanted him to be safe and well looked after, so we found a beautiful care home which he has gone to for respite, and we will take things a day at a time going forward. He is settling well, and one day after leaving hospital couldn't remember that he had been there.

    It's been a horrible experience, and I really hope he doesn't end up going into hospital again.
     
  8. MargeS

    MargeS Registered User

    Sep 1, 2019
    14
    Thanks for your reply.

    Fortunately, my husband has LPA for his father, which was set up a few months ago when my mother in law was diagnosed with cancer, as it was forseen that he was not going to able to manage completely independently without his wife. I understand that the Health and Wlefare can only be instigated once a dementia diagnosis has been made though. We are able to make decisions to help him with his finances though.

    We had no idea though regarding the full extent of my father in law's behaviour.
     
  9. canary

    canary Registered User

    Feb 25, 2014
    10,524
    Female
    South coast
    You can only act on a H&W POA once they have lost capacity (rather than when they develop dementia), but obviously they have to take out the POA before then and it can be registered straight away. You just cant use it till later
     
  10. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,062
    Even if you are self funding a package of care should be in place for when you leave hospital. Mum is self funding, & her package of care from social services is just finishing. Ring adult safeguarding team & ask for an assessment to be done, mention vulnerable adult & fluctuating capacity.
    I really feel for you I’ve done all this it’s exhausting & all you want is your lived one to be safe!
    Take care
    X
     
  11. MargeS

    MargeS Registered User

    Sep 1, 2019
    14
    Oh I didn't know that!! Well, he is in a super little care home at the moment, but I shall be well armed in future. Social Services did call me in response to an earlier referral, and if he does come back from the care home, they will visit and assess keeping him safe at home apparently. Thank you xxxx
     
  12. MargeS

    MargeS Registered User

    Sep 1, 2019
    14
    Hiya, yes, I think that is what I meant - I didn't express it very well. It is registered, it just isn't in place as like you said, he hasn't been deemed by the Docs to have lost his capacity apparently. Thanks. xx
     
  13. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,062
    We have had so many letters & it is so complicated. OH I don’t think realised how complicated until he took over the financial aspect for me! Too many phone calls, letters etc on top of everything else- for me anyway!!
    Adult social services (safeguarding) do assessments & Mum has a social worker appointed to her by them. Fortunately it’s the same one as Dad, I did request that. So she has a background knowledge.
    Ring adult safeguarding team in your area, I initially rang the county councils main switchboard & asked for them.
    Explain the circumstances.

    Hopefully you will start to get more help. I didn’t understand the system until I experienced it myself ... it’s lots of assessments by adult safeguarding that have provided on the needs of Mum a care package.
    Hospital admission triggered this, so it’s worth a phone call. Also talk to the care home about their assessment of the PWD, it’s another perspective of the situation.
     
  14. MargeS

    MargeS Registered User

    Sep 1, 2019
    14

    Thanks for your reply. It certainly is complicated! By the way, what's PWD? I've tried to figure it out but can't work it out!! xxx
     
  15. TNJJ

    TNJJ Registered User

    May 7, 2019
    429
    Hi!Person With Dementia.
     
  16. Palerider

    Palerider Registered User

    Aug 9, 2015
    664
    Male
    North West
    Just to say the hospital will refer your father-in-law back to the memory clinic. Whether that means he keeps his original appointment or he gets one sooner you will need to ask.
     
  17. MargeS

    MargeS Registered User

    Sep 1, 2019
    14
    Thank you.
     
  18. MargeS

    MargeS Registered User

    Sep 1, 2019
    14
    Oh!! Hahaha, you can tell I'm new to this forum!! Thanks :)
     
  19. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,062
    It’s such a steep learning curve, the immense experience on this forum is such a bonus at this time. I am amazed daily at the amount of knowledge & understanding found on here.
     
  20. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,628
    Female
    I agree that hospital is not a good place for a PWD. When my mother was in hospital and the doctors suspected she had dementia, she was referred back to her GP so that the GP could refer her to the memory clinic. As your FIL's GP has already requested a memory clinic appointment things are already chugging along slowly, but you could chase up that appointment.

    Well done on finding him a good placement in respite - it does sound as if he needs to stay there and as he is self funding there should not be a problem with that, as long as he doesn't object.
     

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