1. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    Mum's been in the Care Home for 8 months. She was diagnosed with AD and were were told she needed 24-hour care.

    The staff at the home are clearly over-worked, but are all pleasant as far as I can see.

    Mum says they are not nice. The night staff get cross with her when she wanders, the day staff won't apply her medication to her face and bottom (In fact she says nobody applies medication to her bottom despite her being prescribed 4 times and the GP insisting that the staff apply it, and not my mum). The records show her as being treated with the medication, but mum says it isn't true. I am tempted to believe mum - although she has AD she isn't totally out of it, she knows day to day things very well.

    There is a new activities co-ordinator. I asked mum what she did. "Nothing" was the reply. "Oh, haven't you played Bingo or done some flower arranging" "No, we haven't done anything, all she does is talk, she is so irritating".

    Is it true, or not? How do I find out?

    Mum is so bored and upset, I don't know what to do.

  2. zoet

    zoet Registered User

    Hi Margaret, I have worked ermenantly in several care homes for the last 20 years, and also on agencies in many more. In My experience Id say most of them were pretty good BUT even in the BEST Ive worked at there have been issues with applying clients creams, and grumpy night staff who are cross at being "bothered" during the night. As a more senior member of staff I have had to deal with these issues and the only way to do it is to focus attention on them. Firstly write down your concerns in a letter to the care manager. Explain you are satisfied overall but these areas need attention. Then ask if there are any other complaints about night staff? Ask how often they recieve a night inspection from senior staff. Ask what is done for people wandering at night. Ask to read the previous night reports for your mum on the days you visit. TELL them you would like your own written record of how many nights your mum wanders, and what was done when it happened. TELL them what you want to happen if your mum wanders..."I would like mum to have a cup of tea and sit with staff for 10 minutes and then be returned to her room If she cant sleep could she please watch tv." If wandering is a problem every night ask for a referral to the GP.

    Do a bit of detective work where the cream is concerned. Check the tubes to see if they are going down.Is the cream kept in her room where carers can get at it easily or in the meds cupboard where they have to ask for it? Actually, if it IS in mums room ask to have it locked up so carers HAVE to ask for it...the senior on the shift will know then how many times it has been asked for! Ask for a copy of the MARR sheet to be left in mums room for carers to sign when they apply cream. Is there a notice by her sink reminding carers to apply it and where to apply it? If not, make one. Ask if mum could initial a sheet to say she has had the cream.

    Activity co-ordinators should be filling in care plans to say what they have done with a client. Ask to read it. It should not only say what mum did, but how she enjoyed/ didnt enjoy it, and any other comments made such as what she would like to do next time.

    Basically, what youre going to do is intensify your focus and be a complete pain in the bum for a short while! Records can be falsified, but with your intense focus on the situation, you are telling them "I know something is going on here and I want something doing about it". They WILL react even if they think youre interferring! The care manager will also be REQUIRED to look into things for you, and if there is no improvement you should ask for a solution. Some carers, especially over worked ones,dont see creams, activities and wandering the same way you do, ie important! How many agency are on shifts? because they often arent told about creams.
    I hope this helps you a bit and good luck. Oh and just a word of reassurance....this DOES happen in the very best, caring and loving homes so it is no way an indicator that mum isnt safe or happy.
    All the best, Zoe xx
  3. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Zoe, what an excellent reply! Perhaps it could be copied to resources? It would be useful for so many of us who have loved ones in care.

    Margaret, do give it a try. Going to the top, and being polite but firm works wonders. I did it in the very early days, and I've had no complaints since.

    Good luck,
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Good idea Hazel.

    I hope you don`t mind Zoe, but I have already copied it to my own resource. :eek:

    Love xx
  5. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    Zoe and friends,

    Sorry not to have replied, I have had major work problems so mum has had to take a back seat - which is why I am taking a year out of work from September with no salary at all, to look after mum while she still appreciates it. Also my computer died last weekend, and none of my hard-drive could be recovered, so I have spent a lot of time trying to sort that out.

    Zoe, what a thorough response, I thank you so much. I am afraid I am a wimp on this. I am not very assertive or very self-assured, despite earning a very good salary in my job as a University lecturer. I think you get to know your true character when you are dealing with a situation like this. I feel out of control.

    Can I really insist that staff have a chart on the wall to say when they have applied mum's cream and when not? Isn't the overworked and underpaid senior care assistant (lets face it, they are all underpaid for the job they do) going to hate me for insisting on this? Is she then likely to leave and I will be faced with a less caring person handling my mum? I am not comfortable with insisting on things, I don't know how to do it, I can't even get my husband to close the fridge door after he has opened it - what chance to I have with a care home manager or assistant? I am a real wimp.

    Zoe, I have written three letters to the manager, and each one has been responded to in a professional manner, my concerns have been addressed and action has been taken - for a week or so. Then forgotten. The manager has recently left and a new manager is in place. I like her (she was previously assistant manager), she is caring and loving towards my mum, but I am trying to give her a bit of space while she puts her own stamp on the place cos she is clearly quite overworked at the moment. I do not want to rock her boat. She is also a bit "dizzy", i.e. disorganised.

    Mum wanders every night (it is why she is there, wandering out to the bus stop at 1 a.m.), though it is getting less (so I am told). I suppose there is a record of what happens each night, but are care workers obliged to record it all? I have never thought of asking to look at the records, I just go by what I am told. I would feel intrusive if I asked to look at the records, and in any case there is no proof that the records are true, so what would be the point? If there is no mention of mum wandering, how do I know that it is cos she didn't wander, or cos it wasn't recorded? I am so disillusioned by the lack of state support when a person is self-funding. Is it Law that these records be kept for all residents, or is it law only for those who are funded by the state?

    Zoe, you suggest checking the tubes of cream to see if they have gone down or not. I can't do that. I am simply not bold enough to do it. Please give me the wherewithall to do it. I know you will say it HAS to be done. I know. I am shaking inside already at the thought. My mum is more important than my reticence, but I can't do it. And why should I have to? Shouldn't the GP be making sure that medication is appropriately administered? Does the GP have any clout at all? Mum has had at least 10 visits from the GP regarding her sore bottom, I have only met the GP once, despite leaving a message with the practice AND the care home to say that I wished to be informed of any planned visits in order to be there if I could be. I have only been informed of one visit.

    And I must go back to the Care Plan issue I raised many months ago. I have still not seen a Care Plan (mum has been there for 8 months). I have had no review meeting which I understand should take place six-monthly. But I also now learn that mum has no entitlement to the input from a social worker, and therefore there is only me to see to anything, and as a non-expert I really feel lost. I expected a social worker to be supporting me and mum in solving some of the issues. No entitlement to a social worker input at all. All amateur me. And I am no good at it. And I am scared. And stressed about it.

    I don't feel I am being a very good daughter. I feel I should be doing some "table thumping" but I can't do it. I am not assertive, my husband tells me constantly that I am agressive, and that it is counter-productive. He isn't much help.

    I feel so low. I realise that is no us to my mum, I must snap out of it, but I really can't face a confrontation with the home.

    I suppose unless I get my act together, I have to accep the shortcomings.


  6. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    Dear Margaret,
    I just wanted to tell you that you must not think that you are a bad daughter.
    Far from it as you are raising very valid concerns over your Mother.
    You should have a Care Plan and you are entitled to know what is being done for your Mother.
    I use to be very placid and never had to nerve to challenge anybody until Peter had A.D. Peter's S.W. closed her file on Peter when he was admitted to E.M.I. Unit and I have a fantastic friend who is a Case Worker and it is only through this very compassionate person who has been there visiting and checking any concerns I have with anything.
    I would normally try to give you more help but unfortunately a friend of mine who is 53 and does not know she has AD and is in the same C.H. as my husband, thinks she works there and her husband passed away yesterday, and I have not got my head around that.
    Do hope you find the strength and courage to get everything sorted for your Mum.
    But please remember you are not a bad daughter but some one who loves her Mother and wants the best.
    Best wishes
  7. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Moderator note:

    I have copied Zoe's response to a new sticky thread in Resources.

    I have closed that thread so we can add more examples of such things without there being a mass of replies in there.

    I can re-open the new thread and add to it as circumstance dictates.
  8. vampwillow

    vampwillow Registered User

    Apr 1, 2008
    Margaret please do not think yourself a bad daughter at all.Zoes' post was fantastic and covered some great points.The creams should have the MAR sheet in her room then when they are applied it's noted that they have been applied.As to the car eplans you are entitled to read them and have input in them as you are her next of kin/ main carer,they should sit you and you Mum down and go through them with you to see if there is anything they have missed or if they are doing too much.Care plans should be signed and agreed as they are legal documents.

    The staff shouldn't hold anything against you for making sure your mum is looked after properly after all it is what she deserves.Request to read the care plans and the report sheet that goes with it.Also request with the manager that your mum is due a review and that you would like her to have one

    Nobody is an expert at it unless they've been through it before it's all abotu trial and error and working it out as you go along.Please step forward and make your concerns known it won't do you any good storing it inside.Just ask to have a quiet word with the manager and go from there.

    Hope that you get it all worked out.

    Vamp xx
  9. Cate

    Cate Registered User

    Jul 2, 2006
    Newport, Gwent
    #9 Cate, Apr 26, 2008
    Last edited: Apr 26, 2008
    Hi Margaret

    I understand you find it diffcult to ask questions on mum's behalf. Do you have a friend who could go along to a meeting with you, and bascially do all the talking from your list of things worrying you. The longer it goes on the more fraught you are going to be, and the harder it will be to resolve with the Manager. You say she is a good person, well thats a fantastic start.

    I have to say I am one of the lucky ones, mum is in a fantastic NH with staff that really do care about her, and about me. I think it does help if you can build up a good relationship with the staff, thank them for the good things they are doing for mum, take in the occasional bag of buns, I know the staff looking after my mum really appreciate it.

    Try to keep things quite light when talking to the staff, ask about their day, then drop in the odd question about your mum. If you are able pop in at odd times, even during the night, there is nothing stopping you from visiting when the night staff are on duty too, you might find that they will appreciate your advice on how best to care for mum directly from you, rather than a message 'from above'.

    When it comes to the care plan, how about saying something like "I am so sorry, I havent given you any time to complete mums care plan with me, when is best for you", give a beaming smile with diary in hand!!

    Sometimes you dont need a hammer to crack a nut!!

    Best wishes
    Cate xxx
  10. laura-Ellen

    laura-Ellen Registered User

    Apr 26, 2008
    North West
    I'm 23, and my father has just been diagnosed with alzheimers and i feel like my world is falling apart.

    My mother is becoming increasingly depressed and run down, and to mention this 'thing' that is chipping away at my dad results in a lot of tears. none of them mine, whcih is harder than crying sometimes.

    i dont think i'm in denial, i work with dementia patients and am fully aware of the consequences, many of the older members of my family also suffered with dementia. but, im also not dealing with it.

    I feel crushed by the hugeness of what is hapening to my rock solid family unit and most of the time i refer to my father's illness in matter-of-fact medical lingo...perhaps this gives me some distance.

    I don;t really know why i'm posting this up on here. i have 2 brothers and a sister, but i dont feel i can talk to them... i dont really feel i can talk to anybody. my mum always tells me howw hard she's finding it, but no one ever really stops to ask me how i feel, or how i'm dealing with it.

    I dont know how to get through this. can you ever?? i'm so mad at him, why can't i show the same compassion to him that i show to the patients at work. is that unusual?

    I keep trying to keep it together for my mum, and my dad, but i feel like i'm missing out on my own time to deal and reflect...or is that just self-indulgent?

    i just feel...isolated...lonely...dissapointed...and . well, just crushed.

    I know this is such a depressing message, sorry. you are all dealing with your own families, and reading back through the threads its heart warming seeing how supportive strangers can be for one another. i guess that'swhy i wrote on this one.

    i don't think denial is a bad thing if it helps you get through the day, but at the end of that day, perhaps knowing what to expect and accepting it is liberating, you don't have to worry about that bit, and can get on with the living and loving the moments you have.

    If someone has read this, thankyou. it helps in some way.

    I wish you all the best

    Lots of love
  11. vampwillow

    vampwillow Registered User

    Apr 1, 2008
    Laura-Ellen I kind of know how you are feeling although it's not via direct expreience from a parent having this illness.Just because you are a care worker with patients with alzheimrs does not mean you will deal with it the same way when it's "one of your own".It's an entirely different relationship.I honestly felt the way you do when I went to visit my auntie after she'd had a brain hemmorage.I managed to stay with her for 5 minutes before walking out because I couldn't deal with it.I was truly angry at myself because I'd seen worse in my time as a carer,the difference being it was someone close to me.

    Just take your time allow yourself to feel angry and do not whatever you do bottle it up.If you find theres no one to talk to in real life close to you come on here there's lots of support here for you.The feeling syou are feeling are normal.

    Big hugs

    Vamp xx
  12. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    Dear all,

    Read all your replies, I forget who said what. But the cream for mum's bottom is in the Meds cupboard not in her room cos their is no lockable cupboard in her room, and the GP felt she should not have access to it herself. I spoke to the senior carer today and she said she would have a look at mum's bottom, but I had a look myself - not a pretty sight! It is not as sore as I have previously seen it, but it has spread to a much larger area (up her back) and mum says it is itchy. I have told her (for the tenth time at least), to stop wearing tights. I have given her pop sox and hold ups, but she insists on tights. She often wears two pairs of pants, one under the tights and one over them, and sometimes a nylon pantie-girdle as well (I must remove that, pretend it has been lost). Today I suggested leaving off the tights, and she said "I can't possibly have bare legs", and when I asked why not, she had no answer. But mum has always worn tights, even in the height of summer she never had bare legs. I tried to say "Mum, what is worse, bare legs or the itching"? but she doesn't twig the decision at all. This is nothing to do with AD, she would have been just the same without it. No common sense, poor mum.

    But I am now more concerned about the post by Laura-Ellen, how did it land on my post? I can't see any connection. But she sounds so down, so I am going to read that now, and see if I can help someone else.

    Regards to everyone

  13. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    Dear Laura-Ellen

    Of course someone has read this, and lots of us will reply. I expect a moderator to remove it from this thread and place it elswhewhere (cos this thread was mainly about my mum and her sore bum which isn't much use to you), but in the meantime I will try to offer some support.

    Not meaning to be funny, but hope you find it an amusing anaology, but there are lots of plumbers out there whose wives put up with leaking taps. What I mean is, doing the job with other people is not the same as dealing with your own loved ones. It requires a different mindset. Your involvement with your own family is so much more personal and upsetting than it is in dealing with other people. So don't feel bad about that at all.

    As you are only 23, I imagine your dad is quite young? That is even more distressing for you.

    I don't have any brothers or sisters, so I have to deal with my feelings on my own, and I imagine even with supportive siblings your feelings are unique anyway. And we all have to deal with our own feelings ourselves.

    If you don't feel your siblings will help (have you tried them?)Maybe they think you are the "expert" so you don't need help, which is totally untrue - but there are lots of us out here on this forum who will do our best. Never feel alone. There will be someone with the right words, the right advice, the right level of sympathy for you, so keep talking to us.

    Yes, you might be self-indulgent with some of your feelings - and why not? You are part of this illness too, you are entitled to your own feelings and your own way of coping. It isn't selfish, it is human nature, and if you don't look after yourself you will be of less use to your dad and mum. So don't feel bad about that at all.

    I guess the news is pretty recent to you. So it is understandable to be mad at your dad - well, you are not really mad at HIM you are mad at the fact that he is ill and it is affecting you. I suspect that in a little while that feeling will subside, or you will realise there is no point in being mad at him.

    Being no expert, I wouldn't think that denial is useful as a mechanism for coping. I really feel that acceptance is better, and following on from that, investigation of the practical solutions available.

    Dear Laura Ellen, I hope someone can offer more advice than I can do, but please stay on here and let people help. Yeah, we all have our own crosses to bear, but it is amazing how some people with some really heavy crosses can still provide support to others. There are some great people on this site - well, I haven't met any who are not great in their own way.

    The site is about helping, so ask.

    Much love


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