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.

I'm In meltdown - words of advice please?

Discussion in 'I care for a person with dementia' started by Worrywart 2, Jul 12, 2015.

  1. Worrywart 2

    Worrywart 2 Registered User

    Jul 7, 2015
    39
    My mother had brain haemorhage 3 years ago. She was in hospital for 9 months and then came home with carers. As the eldest daughter it all falls on my shoulders. I have overseen everything since her coming home and it's not easy, as you all know. In January i had operation that went wrong ( long story ) and even though they saved my life, I now have ongoing problems. 6 weeks ago mother started bizarre behaviour like packing everything, leqving house on Zimmer frame to fetch children from school ( in her mind she is sometimes 35 ). Set fire to bits of paper, and generally deteriorated. We are told she has vascular dementia following the brain haemorrhage. She has very recently been out on mimantene sp?
    10 days ago she was hospitalised as doctor wanted to check her decline wasn't medical. Ct scan showed no new bleeds and medically she is ok. Since being in hospital she has continued with her rituals ie packing etc but has become very aggressive and very agitated. Visiting is a nightmare as it makes her worse as she think we are bringing her home. It seems likely she will not be coming home as they feel she is unsafe. I worry that she is like this because she is in hospital and feel any mental capacity assessment will not show the true picture. Admittedly she has deteriorated but is now much worse.

    I feel at the end of my tether, I can't face her going into a home - it will Prob be an EMI home. We will have to see her house to pay for it but i couldn't care about that - it's all so distressing. Anyone been here and is there any way back from this ?
     
  2. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,056
    GLASGOW
    Have you thought that maybe your mum now needs full time care? Its a very hard thought, but could you keep her safe if she came home? Maybe a period of respite from hospital could help you make a ckearer decision. No one wants to decide to put there parent in full time care but often a point is reached. It can be a positive thing too. You get to be a daughter again instead of a carer.
     
  3. CO CO

    CO CO Registered User

    Jul 10, 2015
    19
    Tell me about it it's **** I am losing the plot right now too I have 3 other siblings who care but don't do anything, my mother went down hill within 4 days (mystery illness) and has never been the same since and that was months ago and no one can tell me what wrong with her other than dementia?, I am getting her home soon and I don't feel I have the ability to deal with her new capacity it like being handed a newborn baby without ever having any experience and told to get on with it!
     
  4. Tommy Glasgow

    Tommy Glasgow Registered User

    Jul 12, 2015
    4
    I have been looking after my mum since my father died, 6 years ago. I recently retired which means I can get a rest. Her walking is not great and she uses her wheelchair more often than not. I have been able to observe her for a long time. We have a routine for her which everyone now takes for granted. The most important thing I can pass on to other carers is to make sure the person's sugar levels are not low. as it makes them agitated. I posted in another thread that in my mum's case glucose is good for her, but fructose was bad. I stick to that motto, and read food and drink labels very carefully to avoid buying products with fructose. A lot of fruit and veg get a miss too. The other thing is the current debate about the benefits of coconut oil. My mum takes a teaspoon with her porridge. She also takes peanut butter with toast. At night I give her a snack before bedtime. It can be hard to judge. If she goes to sleep without eating there is a risk that she might take a seizure in the morning, so I need to be up early. If she is awake I give her food and drink as quickly as possible. My mum stopped taking medication for dementia years ago. She could not swallow the pill. The best thing we have done for her was to figure out a healthy diet. A little bit of food and drink several times a day has helped her more, than three set meal times. She is sitting up I the living room, as I am typing this, watching the Wimbledon final.
     
  5. lookingglass

    lookingglass Registered User

    Nov 7, 2014
    11
    Hi, It is really hard. My mother recently fell and had a week in hospital. She was the worst I have ever seen her there - completely lost the plot and didn't know what was going on - talked nonsense and was very unhappy and cross and hugely confused. I decided to just get her home as soon as I could to see if she was better. She lives alone with carers coming in but she was discharged to the Kite team from Social Services who are the emergency lot who come in when someone leaves hospital if they live alone. She was given 24 hr live in free care for 2 weeks which was good and then moved to visits from carers 3 times a day after social worker did an assesment. I have to say she improved as soon as she got home as everything was at least familiar again. She did not make any miraculous recovery and is definitely much worse than she was before the fall, but was at least not talking rubbish and so confused. We now have to pay as she does not qualify for free care and we have careres going in 4 times a day. This is just ok and she manages just about (sort of). I go myself 3-4times a week. I have decided this is the best option for the time being as I do not want her to go in to a home yet if possible. It is not ideal and there are many ups and downs but it is ok for now. You can get 24hr live in carers through agencies if you pay for them and it was not quite as much as I had thought as they have board and lodging from you. I have not gone down this road yet (apart from the 2 weeks free Kite team we had) but it coud be an option for the future? I wish you luck but do get Social services on board as they can help with home care.
     
  6. Isabella

    Isabella Registered User

    Jan 4, 2014
    106
    You sum it up well, Coco. I felt like I became responsible for a toddler over night and I had no idea what to do, how to manage it around my job and my own life. I really feel for you.
     
  7. Worrywart 2

    Worrywart 2 Registered User

    Jul 7, 2015
    39
    Thank you all for your posts. ,y mother remains in hospital and verify confused and disorientated. She has no capacity to make decisions and they would not allow her home. She had a psychiatrist assessment last week and he thinks she needs one to one care owing to her occasional aggression and unpredictable bahaviour. I'm just not sure about any of this And wonder if it's because she is in hospital. I am recovering from a perforated bowel and not in good health. Difficukt times. I've posted on another thread re DST and continuing healthcare, such a minefield.

    Thanks for your input x
     

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