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.

  1. ChristinaG

    ChristinaG Registered User

    Feb 21, 2017
    92
    My mum was admitted to hospital from a care home over three weeks ago and i was told 3 days ago that they have dealt with the infection. We are waiting for physio to hopefully get her moving again (she has been lying in bed mostly in the same position for the whole time but she was mobile in the Home). They also need to remove the catheter and get her bowels moving. The Home says they need to do a reassessment before she returns. Mum is eating very little now and I agreed with the drs not to put tubes into her to force feed. I managed to get a jelly and half a yoghurt down her today. She is drinking but only with a lot of help and not huge amounts but enough i think. The Drs tell me this is part of dementia but the decline has occurred while in hospital. I just think we need to get things moving but it's hard to get anyone to listen. Has anyone else been in this position. I fear this spell in hospital has led to a decline and i cant see her getting her mobility or appetite back. I think the hospital has given up on her but why can't tgey move forward on the discharge plan?
     
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,839
    N Ireland
    Hello @ChristinaG, I don't have experience of discharge plans but do know from past threads that it's common to see a decline when a PWD goes into hospital and then a rebound to their pre admission state upon discharge - which can be 100% on occasions.
     
  3. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,839
    N Ireland
    I’m just bumping this back up the page in the hope that someone with experience can assist you.
     
  4. ChristinaG

    ChristinaG Registered User

    Feb 21, 2017
    92
    Thank you for your replies. I will call and insist on speaking to someone tomorrow to find out why there has been this delay in getting her discharged when she is medically fit from their point of view. I have insist when i need to speak to someone - even when i knew she was put on the wrong drug it was difficult to get anyone to speak to me. My poor mum is so distressed - anyone would be after nearly three weeks lying in bed (and she has terrible arthritis especially in her back), let alone someone with dementia. They must surely need the bed. The trouble is i can't see her suddenly being able to get out of bed and become mobile again with one session. She can't even move her position in bed and i often find her slumped sideways off the pillow in an awkward position when i visit daily. I don't even know whether the Home will take her back so might be searching frantically for a suitable one on top of everything else.
     
  5. acorns

    acorns Registered User

    Jan 25, 2018
    103
    The hospital part of this all sounds very familiar as we've recently been in the same position. There was a two week delay in getting home - one week for multi-disciplinary professionals to all sign her off - physio, OT, social worker, dr and various other professionals involved - then one week to make sure all in place at home, new equipment etc.

    Mum also ate next to nothing whilst in hospital so I had to go in every day to give her 'little and often' of custard, ice cream, liquids etc. The most useful thing about the hospital stay was that a speech therapist assessed her swallow and said she should be on texture C thick puree + liquids as she didn't recognise 'texture' and so was spitting out or refusing anything more solid. So now we're home she's on a thick puree diet and that is working okay and mum eating more.

    During the four weeks in hospital mum became very weak and still has not regained her strength to walk (still waiting for physio two months on). Otherwise she is much brighter and I do feel we are still on an upward path...

    Perhaps you could contact each of the professional teams to find out where the delay is. If they are awaiting an assessment at the care home it might be that - ?
     
  6. ChristinaG

    ChristinaG Registered User

    Feb 21, 2017
    92
    Thank you for your reply. I will take up your good point about not being able to swallow as that could well be the problem. The hospital don't put her teeth in and now she refuses to have them in so that won't help either. I was told she won't accept meds now but they give them in tablets - they have been crushed and disguised or given in liquid form for months in the Home but the hospital just won't listen. It's a silly thing but they keep giving her a straw to drink with - she hasn't been able to use one of those for 5 years.i even got it put on the board above her but it makes np difference. They present her with a straw and then tell me she is refusing tp drink. They have strict rules about visiting from 2-8 so i am only with her during those hours but another patient told me they don't try v hard to feed her at breakfast and lunch. She often looks asleep when she isn't but they just take the food away. I give her soft things as ut happens such as jelly and yogurt, jelly is easier. I tried other stuff but she won't even accept banana now and she loved that. Some staff could be more caring but they need extra help. There are so many elderly people in the ward with dementia or similar. I think they are cutting their noses not allowing relatives to help other than visiting times and is affecting their loved ones as well. It isn't the Home causing the delay as they are chasing me for progress. I put a call through to the hospital this morning and was told to ask when i come in this pm but I've been there before. Thanks again for the tip re swallowing, this could make a world of difference to her.
     
  7. DollyBird16

    DollyBird16 Registered User

    Sep 5, 2017
    1,186
    Female
    Greater London
  8. acorns

    acorns Registered User

    Jan 25, 2018
    103
    You could also check (if not already) if they have recorded her weight at intervals and what that is. Is she taking Fortisip, Fortijuice or Forticreme desserts in hospital? Those would build her up if not taking much else. Perhaps you could ask for a referral to the speech therapist for an assessment - or better still find their number at the hospital and phone them yourself to voice your concerns!

    Mum isn't keen on banana now either - she spits the bits out. If you google texture C thick puree and texture E diets you can find plenty of examples of snacks. Mum would take custards, yoghurts, ice creams, fruit puree, liquid drinks as snacks in hospital (but not rice as it has lumps in it.)

    You should just go in when you want and see what happens. If they tell you to go away you could phone the trust and explain the situation ...

    Good luck!
     
  9. ChristinaG

    ChristinaG Registered User

    Feb 21, 2017
    92
    Thank you for your advice Acorns i will turn up at lunchtime tomorrow. Mum had half a fruit yogurt, ice cream and a few sips of soup yesterday although it took all afternoon and she became distressed. She drank well. Thanks to your advice the hospital are arranging for her to be checked by the speech therapist re swallowing. My concern is that the physio did one visit and on the basis of that has pronounced that she will never walk again even though she was fully mobile when she came in three weeks ago. She is bound to be weak and more confused and not eating will make this worse. I am sure they wouldn't have given up if she weren't a patient with dementia. When I pointed this out politely to the Dr he said I have to be realistic and she has undergone a step change. She is now apparently doubly incontinent too as she has not been got out of bed to go to the toilet and has had a catheter in for three weeks. Anyone would need time and effort to get back to where they were let alone someone with dementia. I think they have written her off because they see she is confused but that is normal for her, she hasn't deteriorated other than as a result of the hospitalisation. Or am i grasping at straws? The other thing i am worried about is that the Home is doing an assessment on Monday. If they refuse to take her back, where is she going to live? I know nothing about other Homes in the area let alone whether they have vacancies. Drs keep telling me she may need a nursing home but she doesn't have nursing needs now the infection has been dealt with. I visit every day so it needs to be close enough to my home. She gets so distressed sometimes and I think it's because she has times of some lucidity when she has a good idea of what has happened to her and what she has lost. She also goes way back to difficult times and becomes frightened so i must be there. I have forty sips so will bring some in tomorrow with other stuff to tempt her to eat.
     
  10. nicoise

    nicoise Registered User

    Jun 29, 2010
    1,807
    The infection itself, along with the upset caused by hospitalisation, could have made her more confused and less able than prior to her admission, but hopefully will resolve although that could take longer than hoped for.

    Your help in feeding and encouraging her with movement would be invaluable to furthering her recuperation, plus ease the burden on nursing staff. I think it’s ridiculous they won’t allow you to visit at that time. Of course, it may be protective to the individual and the whole ward, as visitors aren’t always of the helpful variety!

    Sadly your story re the physio, doctor and staff is pretty standard, but doesn’t help your poor Mum, nor you worrying. Unfortunately she is vulnerable, and will have declined from the whole episode so much more than a fitter person and it takes a much greater toll. Stick to your guns, and hopefully you’ll get listened to a bit more :)
     
  11. acorns

    acorns Registered User

    Jan 25, 2018
    103
    Morning ChristinaG - I'm glad the speech therapist is going to assess your mum - even if only to rule it out. I felt exactly the same about my mum's stay in hospital - how they seemed to give up on her. It made me so cross that I realised later that I'd hardly smiled for a month, - so I was sitting with mum with a big glum look on my face trying to get her to eat - not exactly stimulating company! The other thing I should have done was to concentrate on getting her to move. One professional told me recently any movement is good. If I'd got a list of exercises when in hospital from the physio there then i wouldn't have been waiting 2 months as I am now for someone to come out. So that's the rest of my hospital advice but I don't know anything about care homes.
     
  12. Lancashirelady

    Lancashirelady Registered User

    Oct 7, 2014
    110
    my Mum has been in hospital for a week after falling and breaking her hip. The surgery was a complete success but she has been very distressed and refusing to eat ever since. We had world war 3 when the physios tried to get her out of bed but once they finally got her out she has been a lot more settled sitting in a chair during the day. I have been going in with little treats, which I can persuade her to eat but she still won't touch the hospital food. Her CH agreed yesterday to take her back asap but today the cautious duty doctor has insisted that we wait until the consultant sees her on Monday before discharging her - so instead of getting her back to familiar surroundings she can continue to be bewildered, upset and unwilling to eat because the doctor hasn't the courage to follow what had already been agreed. The day Mum had her fall the home told me to demand that Mum go back to them for rehab as they felt they could do it best. To me it just seems yet another example of NHS inefficiency and wasting money while not doing the best for the patient.
     

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