1. mymemories

    mymemories Registered User

    Apr 23, 2016
    I apologise for this lengthy post but I need some advise.
    Wow! what a visit I had with my Mum over the Bank Holiday! I decided to visit her rather than bringing her to me for her usual 'holiday' as it was taking her a couple of weeks to settle back into her home.
    I arrived and she was delighted to see me. I noticed that her clothes were dirty (Mum has a Colostomy and has had this for the last 13 years) when I lifted her top I saw that she had no bag over her stoma!!! I took her into the bathroom and asked her where her bags were - she replied "I don't have any" I knew she did so went and got some for her. When I looked at her stoma it had a huge swelling above the stoma site (looked like she had swallowed an orange!).

    I was really concerned and wanted to take Mum to A&E but wanted to check with the carer who showered Mum on Friday (it was Sunday by now) that it was not like this (I had a feeling it wasn't as my gut told me she would have contacted me). The carer arrived a little earlier and popped in. When she saw it, she said it was a little swollen but nothing like it was. She asked my Mum why she didn't have a bag over her stoma to which my Mum repeated that she didn't have any. The carer said to my Mum "why didn't you ask" I was close to saying that my Mum shouldn't have to ask and that she should check but I kept my thoughts to myself as my primary concern as my Mum.

    I took Mum to A&E and they decided to keep her overnight after standing my ground (she has perforated her bowel twice and nearly died on both occasions the last kept her in ICU for 3 days in an induced coma so I don't take chances with her.) They kept her in for observation and I stayed with her until 4am as she was understandably frightened so I just sat with her and we chatted until she was settled. They discharged her the following day saying that she had a Hernia. When I got home with her I was putting her clothes away and found dirty clothes and underwear in with all her clean clothes, the coffee mugs and plates (that Mum had washed) all dirty, Choc Ices in the refrigerator, bathroom and kitchen sink very dirty, shower cubicle not cleaned and the shower head left on the floor, kitchen floor sticky and a very, very dirty tablecloth on the table!

    I have raised these concerns with the carer before and had asked her to keep an eye so I was totally dismayed when I saw these things (I know the dirty clothes where folded very neatly in the drawer but that is no excuse I managed to see them).
    My Mum says that when the carer visits she doesn't do anything she just does the jigsaw puzzle with her and they sit outside on the wall and chat. I have to be very careful as to what I say due to Mum's AZ but on this occasion I could see it with my own eyes.

    When I was in the hospital with my Mum I was shocked to see how much weight she had lost. She has a cooked meal (served hot) (not meals on wheels) delivered to her each day by a different lady. The meal is very, very, good. However, during our conversations in the hospital Mum was telling me that if she has something on her plate she doesn't like she flushes it down the toilet (although the lady has said that if there is anything she doesn't like then Mum is to tell her). I told her that she should put it in the bin as it may block the toilet!! I thought that way if she isn't eating all her lunch the carer will be aware as she should see it in the rubbish bin. So I don't know if she has lost weight due to not eating all her meal or there is something more going on. I had a couple of telephone calls from my Mum around 17:00 saying she is hungry so I have now arranged for the lady who does Mums lunch to leave a sandwich for her which my Mum has at 18:00. She leaves a lovely Tupperware type box (Mum and I call it her 'Picnic Tea') it contains a filled roll or sandwich some savoury biscuits and piece of fruit and a yoghurt.

    When I visited I didn't cancel the carer so as to keep Mum's routine the same. The carer returned in the afternoon (she has an hour 3x a week to help with household chores etc.) but all she did was sat and chatted to my Mum and emptied the bins (she didn't even wash them out I ended up doing that). The carer had put a bottle of milk in the freezer! When I asked her why it was there she said it was a back-up but I don't think she appreciates that things like that confuse my Mum. Added to that, Mum wouldn't wait until it defrosts plus I think she would start leaving her fresh milk out which would then go off. Upon my departure I removed the milk from the freezer and explained my reasons in a note to the carer. I am not too sure if any of the carers from the agency are trained to deal with AZ and Dementia clients.
    I think the lines have become VERY blurred. My Mum sees the carer more of a friend and thinks she is coming in because she likes her, but in the next breath Mum moans because the carer doesn't do anything (except the jigsaw and chats about the other people she visits). I feel lucky my Mum has a good relationship with her carer, however, I feel the carer is taking advantage of my Mum's kind nature. Am I right to have these concerns or am I being silly?
  2. Beate

    Beate Registered User

    May 21, 2014
    If she is employed to do household chores then that's exactly was she should be doing. Your Mum might enjoy the jigsaw puzzles but you can get a sitting service in to do these things with her. The house needs to be clean, your Mum safe and well cared for and the food eaten.

    I've read your previous posts and I don't feel that the situation is sustainable much longer. You're too far away to oversee everything, the carer is useless, the place is a tip and she could get seriously ill, which is all very stressful for you, and harmful for your Mum. I'd say hire a cleaner to blitz the place, take the carer or their agency to task and urgently start looking for care homes close to you. Your Mum's safety has to be top priority, overruling any wishes of not wanting to go into a home.
  3. mymemories

    mymemories Registered User

    Apr 23, 2016
    Hi Beate, thank you so much for your advise. I thought I was being over protective. I am due to visit a couple of care homes on Friday as things need to change. Thanks again, you have really helped.
  4. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    hello mymemories
    I couldn't agree more with Beate
    your poor mum deserves much more care and attention than she is receiving; such a shame that the carer isn't recognising her responsibilities
    I hope the care home visits go well - finding a good home to support and look after your mum will be a blessing for her and a weight off your mind
    best wishes to you both
  5. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    #5 Amy in the US, May 11, 2016
    Last edited: May 11, 2016
    Hello, mymemories, and I am sorry to hear about this situation.

    As you asked for our opinions, I will offer mine. Please understand I am not being critical of you in any way. NO, I absolutely do not think you are being overprotective, I think you are a caring daughter who wants her mother to be safe and looked after properly.

    If I were you, I would be livid with rage.

    The situation with the stoma bag/hernia is unacceptable, full stop.

    The cleanliness situation is unacceptable, full stop.

    Your mother's weight loss is unacceptable, and you should have been informed!

    I'm relieved you happened to visit and had the presence of mind to get your mum to hospital ASAP. What would have happened, if the carer had not checked her stoma? Worse, what would have happened if the carer had not turned up? How stupid is the carer, to ask a person with dementia, why she didn't have a stoma bag fitted and why didn't she ask for one? A PWD can't do that, that is the carer's job!

    Sorry to get so emphatic but it's really not okay at all. I shudder to think what could have happened.

    I would guess that however much care your mother is receiving, it is probably no longer adequate to her needs. I would consider either a live-in carer, or a move to a care home, to make sure your mother is safe, has her medical needs met, is fed, clean, has company, and is looked after by people who have training in dementia.

    Beate alluded to you living some distance away? I also suggest you find a care home as close to you as possible; this made a HUGE difference to me. My mother lived a hundred miles away from me and the constant driving (to visit, to sort out problems, to take her to many doctors' appointments) was very wearing on me. Now she is in a care home only fifteen minutes away, which makes it much easier to take care of things for her. I hope you will consider this option.

    Sending you and your mum very best wishes, that you will be able to find a solution to this situation.
  6. mymemories

    mymemories Registered User

    Apr 23, 2016
    Thank you all, for your valued opinions.

    Amy in the US, I am in the same situation as you were as I too live just over 100 miles from Mum. You're right it does take its toll driving to and fro. I value you input and advice and I am definitely looking into Care Homes close to me. I am due to look at a couple of Care Homes later this afternoon which are only 15 mins from my home.
    I was livid, but didn't want to show how much I was to my Mum although some of my annoyance slipped out during the days I spent with her.

    I have spoken with the agency, and gave them a piece of my mind and the concerns I had during a telephone conversation. I have also put this in writing to them and also sent a copy to SS and her GP! The carer has been on annual leave this week but I received a text from her telling me that she had received a text from the stand in carer saying that Mum was refusing to have her shower!!! Why on earth the carer didn't contact me directly. I run my own business and work from home so I am lucky enough to be able to schedule my work so I can visit Mum again next Thursday and stay for the weekend. I just want to keep a closer eye on her and keep the carers on their toes after the last visit.

    Mum told me that she was so lonely in a couple of her 19 telephone calls to me throughout yesterday. However, last night she told me she went out of her home and couldn't get back in again but another carer let her in as she told me she was frightened but in the next breath told me she had her keys in her pocket. It breaks my heart to know that she felt frightened. I keep reminding her to take her mobile phone out with her so she can call me when she is out too. I hope she will be reassured upon hearing my voice and talking to me and I can get her the help she needs. I have spoken to the care agency to find out if this did actually happen, or if it was something in her imagination. They have said they will contact the carer and get back to me.

    I think the sooner I get her moved the better. Thank you again for your help x
  7. MollyD

    MollyD Registered User

    Mar 27, 2016
    I'm horrified reading your OP, mymemories, for both your mum and yourself. I'd be beside myself if I witnessed such lack of care for my mum. I think your way of handling it and the steps you're taking is spot on. It's a disgrace you both had to experience this on top of your mum's disease. You didn't overreact. You are fantastic.
  8. fizzie

    fizzie Registered User

    Jul 20, 2011
    If you are going to look for a care home near to you can I suggest that you go to your local carers cafe and get some local info - things you will never find out in a book or a website about the local facilities and homes. You will meet people who have used them and are usually very willing to tell you too!

    Once you start to narrow down the search then I'd advise you to go to the Care Quality Commission website and look at the reports on the homes and don't go for anything which has less than 'good' in each section would be my advice. No guarantee but better than nought!

    This is useful to take with you when you start looking
  9. Mollygoose

    Mollygoose Registered User

    Dec 19, 2014
    I would tell the carers boss thAt things are not getting done ! My mother has carers and the carers are checked every few weeks ! Mums got good carers but I tend to keep a check on things twice a day myself but I only live 3miles away ! Take care !
  10. Gwendy1

    Gwendy1 Registered User

    Feb 9, 2016
    You're obviously aware of the situation, and struggling to control it, not your fault. X. We trust people, sometimes they just don't live up to that trust. You are worried about your mum's 'basic' care needs really, that's just what they are-basic, and should be met, by any Carer. You're right to review the current situation, I think. It's not easy..❤️️Xx
  11. Otiruz

    Otiruz Registered User

    Nov 28, 2015
    Hello mymemories,

    The carer and the agency are letting you and your mum down and I believe you know this but just need a little support and this is understandable. Your mum's needs are more complex and it's so unfortunate that the care provided is not able to sustain her requirements. If she were my mum I too would move her to a home closer to where I live. Independent living, with help is absolutely fine as long as the help does not compromise the health of the person on the receiving end. Hope you can resolve these issues - it's very tough.
  12. Aisling

    Aisling Registered User

    Dec 5, 2015

    Yes, you are absolutely correct. What on earth is the carer doing? Does carer know anything about DM. What an awful experience this was for you but TG you were with her. Carer asking your Mum questions and giving instructions!??

    It is good that your Mum is getting her meal and picnic tea. That lady sounds lovely.

    I can only say this honestly and no offence intended as you have enough on your plate..... But get rid of that carer asap.

    I don't know where you live but can you shout and scream for help from SS? Can your Mum get a care package?

    You may like me get next to nothing but it is important for us to shout for help. Maybe in the near future the powers that be will eventually take notice.

    The health care that people suffering with AD get sickens me. Yes I have experience of useless carers

    Loads of support,

  13. mymemories

    mymemories Registered User

    Apr 23, 2016
    Thank you Fizzie for the checklist link. I am off to my first AZ Carers Café on Monday. I picked up a leaflet about it when attending an appointment with my friend at the Mental Health Clinic (they hold a Dementia Clinic in the same building so I found lots of leaflets and pamphlets and details about the Carers Café was among them. I did also have a peak at the CQC website, although reading your post I think I may have done things in the wrong order. The care homes visited were rated good and outstanding. I managed to download the factsheet and took it with me. Thanks again.
  14. mymemories

    mymemories Registered User

    Apr 23, 2016
    Hi Aisling, I am furious with the carer and I am waiting for a call from the agency manager to discuss what (if any) training the carers have for AD. They have said they will call on Monday. SS put together a care package and amended it last year but I don't think it is fit for purpose now.

    The lady that brings in my Mum's cooked meal at lunch and Picnic is wonderful she would make a super carer!

    Thanks again for your response, not offended at all, advice greatly appreciated.
  15. fizzie

    fizzie Registered User

    Jul 20, 2011
    The lady that brings in my Mum's cooked meal at lunch and Picnic is wonderful she would make a super carer!

    It is always worth asking! Often people are looking for extra work these days
  16. JohnBG

    JohnBG Registered User

    Apr 20, 2016
    Lancashire UK

    Care companies now need to be #dementia aware, I search the Net to find out that half a day DM training was all that the staff had, my mother has now today had 18 carers. Her medication which in on the Care Plan now needs to be updated so that the carers have an understanding of my mother's medication needs, as said we have to be careful my mother would just chat as she still is at the denial stage.

    Although said,she had something to tell me she could not remember, that is her condition, so no pain medication for three days so I have learned something important also. I bought her a whiteboard so that when she does remember she can write it down if possible.

    Take care u, we may try to deal what they have rather than what it might be. :)


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