1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. alanalan

    alanalan Registered User

    Jun 6, 2014
    10
    Kent, England
    I found this site, and have been a member, for a while,and found it very helpful.

    My mum was diagnosed with Alzheimer's / Dementia a year ago.
    Though, with hindsight, the signs were there a lot earlier, but were not picked up on.

    Just recently though, my wife and I are finding it increasingly difficult and confusing with regards the care my mum is receiving at the hands of the nursing / care system.

    I am under no illusions as to the progressive nature, and the outcome of my mums condition.
    Our soul priority is to ensure that whatever time my mum has left is made as comfortable, and stress / pain free as possible.

    Recent events have made the situation increasingly upsetting and very confusing.
    I welcome any opinions, advise, and just need to share my thoughts with others experiencing similar situations.

    I feel my 85 year old mother may have entered the final stages of Alzheimer's / Dementia. She has become very abusive and agressive, refusing meals and medication, and very unco-operative, regarding washing dressing etc. Whilst I feel for the staff who have to deal with her, I feel they should be doing more than they actually are.

    We recently found medication on the floor, ( not for the first time ), which had been discarded. A drink, she had thrown across the room in a fit of temper, and was still not cleared up over an hour later.
    When we mention our concerns to the staff, and suggest things, they make various excuses, "its against her human rights", "we are not allowed to do this, or to do that", etc.

    The following is just one such example:
    Because mum is able to get to the toilet in her room, albeit with great difficulty, using a tri-frame, they say "she has mobility", ( Despite her care plan saying she needs two carers to help her at all times ), therefore they are "unable to use pads on her, as its against her human rights". Then we find they use them at night due to bed wetting issues.

    This is just one example, there are many others. To this end my wife and I arranged a meeting with the home Manager, and voiced our concerns.
    The Manager had an answer for everything, most of which seemed to make no sense at all.

    On more than one occasion we have found her in the same cloths she had on the previous day, hasn't been washed. when we question this, they say they can't make her change her cloths, or get dressed / undressed if she dosn't want to. They can't make her eat / drink if she dosn't want to.
    We are finding this attitude extreemly frustrating, as she clearly lacks capacity to make the very basic of decisions, and has been assessed as such.

    I brought up the subject of DoLs, ( Deprivation of Liberty Safeguards ) as mum seems to meet some, if not all the various criteria for it, and I feel it could be of benefit. Enabling the staff to use meassures they currently can't or just don't want to use, for whatever reason.

    The Manager dismissed this suggestion out of hand, saying they only need use that if the resident is trying to get out of the home. It would serve no other purpose.
    I did, however disagree, and insisted the Manager arrange for the relevant assessments to be made.
    The Manager did agree to this, though she seemed reluctant.

    Mum has already had a Community Mental Health Team conduct a "routine" assessment, which clearly states she lacks mental capacity, is unable to make dicisions, unable to retain information to make such decisions. Their care recommendations differ in some ways,from what she actually gets.

    Sorry for long post, just very confused, not sure what's the best way forward. We feel we are banging our heads against the wall.
    Alan
     
  2. Beate

    Beate Registered User

    May 21, 2014
    11,717
    Female
    London
    #2 Beate, Jan 30, 2015
    Last edited: Jan 30, 2015
    I think you might want to look for another care home. While it's true to some extent that you can't force someone to wash or change clothes, it's also neglect if you don't attempt to, as it could cause skin problems for a start. A good care home knows how to deal with difficult patients and how to persuade them gently. The human rights talk is a cop-out. If someone has no capacity anymore, best interest decisions have to be made. It's not a good sign if a care home manager is so reluctant to improve the situation. As for it being against human rights to use incontinence pads on someone with mobility, I've never heard so much **** in my life. Actually the opposite is true, it gives back independence! My OH is very mobile and uses pads day and night - they give him the confidence to go out and enjoy his life!
     
  3. alanalan

    alanalan Registered User

    Jun 6, 2014
    10
    Kent, England
    Thanks for that.
    I'm reluctant to move mum again, as this is the third home we have tried in the last twelve months, the first one she was assaulted, the second one was not equipped to cater for the severity of dementia care.
    This one, I'm keeping a close eye on and pushing for improvement. I have extended family who are able to visit almost daily, my wife and I visit twice a week, as we live a long way away.
    But I will if all else fails.
     
  4. Katrine

    Katrine Registered User

    Jan 20, 2011
    2,850
    England
    I would recommend that you visit plenty of other CHs, if only to discover what the best practice can be. Never mind the price at the moment, just go and visit them to see how they operate and ask specifically how they would deal with the issues that your mum has in terms of her care. The answers will be very revealing. Some will say the same as the current CH, but others will explain how they manage incontinence for an ambulant resident.

    Initially MIL was placed in a CH by SS where the managers spouted similar nonsense. It just shows they are not staffed and trained to deal with your mum's needs. The CH where we transferred her has a much better culture and far better staff training.

    The most distressing aspect of her stay in the first CH was that they said she was partially incontinent (she is not). In truth she couldn't find the toilet and would put off asking until she was desperate because they kept telling her off for asking where it was. We told them that she needed prompting to go on a regular basis but they would just ask her if she wanted to go, rather than escorting her. They said that she was physically able to go and use the toilet by herself and they'd shown her where it was several times. :confused: Hello, dementia... :rolleyes: There were issues with urine on her bedroom carpet and poo being hidden in ornaments under her bed. It makes you cry with pity for her loss of dignity. :(

    The good news is that in the 16 months she has been in her new CH she has not had once incident of incontinence. MIL is physically capable of going to the toilet by herself although I don't know if she washes her hands. In the morning she requires full supervision with washing and dressing because she is incapable of the complex sequencing required to get from smelly and scruffy in a nightie to washed and dried, teeth cleaned, hair brushed and dressed in appropriate clothes.

    This is in her care plan. There is no question of staff coming on shift and not knowing, or making assumptions, she has been assessed as needing this and that is what she gets. Well trained staff can find ways of cajoling a reluctant person to wash or toilet. They work out the best time of day to do this for each individual, depending on their mood cycles. The weekly assisted bath usually happens mid-morning or mid-afternoon, planned to be when staff are not needed to assist with meals etc.

    Anyhow, not sure if any of that helps. My advice is to find a better CH. It is only by going on visits and talking to staff elsewhere that you can work out how things could be done better with your mum. In our experience you can visit the resident's CH and talk to the managers every day and they'll promise to do better, or say that they can't because of human rights or whatever, but in reality nothing changes.

    It is an issue of leadership and training, just as much as one of how many staff they employ. Excellence in residential care does not have to have the highest price tag in terms of fees. Keep looking, and good luck. :)
     
  5. alanalan

    alanalan Registered User

    Jun 6, 2014
    10
    Kent, England

    Thanks for that Katrine.
    Rather puts things in perspective.
     
  6. CJW

    CJW Registered User

    Sep 22, 2013
    213
    Just a thought....my mum was very obstinate and no amount of persuading would get her to change clothes or have a wash if she had decided not to. It was almost a game she played to see if she was still in control. The wonderful carers in her CH would try everything, including bribery with a treat, but even this didn't always work. So mum was often grubby, hair unbrushed etc. but she was happy, and for me that was the important thing. They also were very flexible and would suggest a bath at different times during the day which sometimes worked eg. Mum would fuss about not wanting dinner so they would ask if she preferred a nice soak in the tub and a sandwich in her room.
    I agree that sometimes individual rights are a good excuse for not doing what needs to be done but can't help thinking that respecting the person's right to decide about minor, non life threatening issues is important. If I were you, I would prioritise and deal with one issue at a time...probably starting with the incontinence pads!
     

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