Please don't hate me for my honesty, I love my mum but...

Discussion in 'I care for a person with dementia' started by Jaycee23, Aug 6, 2014.

  1. Jaycee23

    Jaycee23 Registered User

    Jan 6, 2011
    I read posts regarding when we first discover our loved ones being affected by this dreadful (putting it mildly) disease. When my mum was showing signs of forgetfulness, leaving food in fridge turning mouldy, not washing as often, aggressive if confronted with any concerns etc. Our advice is get the Doctors, social services etc in to care or assess. In my mum's case she was full on anxiety and accusations and then complete denial or forgot how she behaved. You never went home without feeling utter despair or should I say gutter despair. The tears shed which I never thought I had so many. Eventually she was firstly sectioned and then moved to a EMI unit. Visits are hard as her misery is very evident. Yesterdays visit for example - sitting there in the lounge area -smelly, airless other than a fan moving smells around the room, a man sitting opposite with snot hanging from both nostrils to the floor literally! trying to do up his Velcro shoes. Another man approaches me and starts to pull down the front of his trousers (saw this happen on a previous visit when a man peed on someones lap) and I had to get a member of staff to come and stop him. The staff do not walk they crawl and you get the idea that they hate their jobs but can get no other. The lounge carpet is worn and the skirting boards covered with tea stains, the wallpaper has been ripped off. I sit in misery with my mum looking at what her world has come to and pray that when I (god forbid) show signs of dementia, that I will be left alone in my home and get food poisoning from mouldy food in the fridge and die. It does not help my mum as she is aware of her surroundings but I know she is mentally ill and on the ward because of her aggression (I sometimes wonder if I would be the same looking at her environment) and constant trying to escape (I do not blame her). This urge for us to do our best to keep them safe!! For what reason, to live like that! I come home feeling immense anger and frustration at our world and how we are treated when we are old and the shortages of staff, money etc and if you cannot live your life decently then why would any of us not want to die. I certainly do not want to be preserved, drugged etc so that I can end my days in places like that to be told it is the best they can do. Sorry I am going through a bad time at the moment. One good thing about the visit was that I managed to wash mums hair and I made her laugh when I put a shower cap on her teddy. What a joy joined with despair and tears on the way home.
  2. SisterAct

    SisterAct Registered User

    It must be heartbreaking for you Jaycee seeing your Mum living in the conditions you have described. Something needs to be done about it, surely it isn't acceptable?
    Perhaps a letter to your MP!

    Seriously she would be better treated in sad, it made me cry.
    Thinking of you and your Mum xxx
  3. jeany123

    jeany123 Registered User

    Mar 24, 2012
    Jaycee that is terrible no wonder you are upset, it is bad enough to have to leave a loved one in a lovely clean CH with nice staff but it must be terrible to have to leave her in that depressing place, I can't think of any words of comfort, it must be heartbreaking for you, It is so sad, I am pleased you made her laugh,

    Sending hugs from Jeany xx
  4. Wolfsgirl

    Wolfsgirl Registered User

    Oh Jaycee I cannot believe I have just read all you have described. Your heartbreak must be so immense - I am not able to offer solutions or suggestions other than sending this very description to the CQC about your findings. Do you take any photos when you visit to prove the squalor exists?

    I hope something happens to change this situation for both your sakes.

    Best wishes
  5. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    Just heartbreaking :(
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    I agree with Wolfsgirl , Jaycee. Your mother does not have to be in a home like this. it is unacceptable.

    Contact the CQC and tell them what you have witnessed. If the issues in the home cannot be resolved to make life better for your mother and visiting more tolerable for you, your mother needs to be moved.

    Here is the Freephone number for the CQC

    You can contact us at our England based National Customer Service Centre:
    Telephone: 03000 616161

    This is the link.
  7. geo

    geo Registered User

    Jul 19, 2014
    Joycee this must be the most awfull time for you no wonder your angry.Its disgusting that our loved ones have to live like this in this day and age. I would report these condonditions its just not fair. Criminals do get better conditions than what u describe it makes me sick it really does. I feel for u and send love xx geo girl
  8. Jaycee23

    Jaycee23 Registered User

    Jan 6, 2011
    Thank you for your replies. I am firstly going to phone her Psych nurse who I know visited yesterday but usually hard to track down. I am going to complain and see if they can move mum somewhere else. Mum is under Continuing Care so I think that they just put her somewhere cheap. My worry is that if I complain to the Home Manager directly then mum will suffer. This home was highly recommended by social services saying that it is secure and that is what mum needs. I so wish she could be put in a lovely home and even if she had to pay for it I would not care but my siblings would as they want their inheritance. They have not visited her for over 15 months so do not see how it is. There is only one other emi unit in my area and I plan to go and visit that to see what it is like. Thank you again x
  9. Wolfsgirl

    Wolfsgirl Registered User

    So easy now to take photos on a mobile now, also send to the siblings.....'thought you would like to see how Mum is doing' etc.

    I have complained to my Mum's ch manager and the response was always to try and resolve matters....whether these people are paying or not should not matter. They are entitled to be treated better than criminals!

    Please do let us know how it goes. You have my heartfelt sympathy x

  10. Saffie

    Saffie Registered User

    Mar 26, 2011
    Near Southampton
    Jaycee, EMI units do not have to be like that and the conditions you describe are totally unacceptable and inhumane.
    You would not need to suffer from dementia to feel depressed, desperate and aggresive in a place such as you describe.

    We visited a place amongst the 14 or so I visited when seeking a nursing home for my husband and it was dreadful. It closed down within months of our viewing it.
    Please do complain, and loudly.
    Very best wishes.
  11. loveahug

    loveahug Registered User

    Nov 28, 2012
    Moved to Leicester
    There is a high price for your mum to get this disgusting level of care, her and your mental health for starters and as for the financial side, all of us are funding this disgraceful affair via our tax, NI, VAT, etc etc etc. I'd take photo's of the place (not the people) and send them to the local paper, ask your local MP if he/she would care to visit with you one day. I'm outraged with you as you can probably tell.

    Forget your relatives, we all think you are doing a fantastic job of caring about your rmum, so chin up and stick with it.

    Many, many hugs x
  12. rajahh

    rajahh Registered User

    Aug 29, 2008
    I think the idea of inviting your mp to visit with you would be a great idea. Or the local paper. Do not tell the home you are coming with a visitor just turn up.

    My mother was in a psychigeriatric ward in the 1970s and conditions were similar to what you describe except the staff always seemed caring.

    Times have changed and we are all more aware and there is no need for this now. Sending love
  13. Wolfsgirl

    Wolfsgirl Registered User

    Fabulous ideas! I am sure a local paper would be interested in a very topical 'story'!

  14. Grandma Joan

    Grandma Joan Registered User

    Mar 29, 2013
    Poor you how awful for you to have to deal with this alone. It's not fair on you or your dear Mum. My Dad was in an EMI unit last year and I remember snotty noses and flegmy coughs. Just so distressing for all. And I so totally agree with you that we work so hard to protect them and wrap them in cotton wool when unfortunately this is what it could all be for. My mother in law (with Alz too) often laughs at me insisting she takes her tablets for her heart & she says well if I don't remember to take them and it's my time to go then just let me go. And it makes me think, yes, a massive heart attack that takes you suddenly would be so much kinder than a slow gradual demise.

    Oh dear this isn't very positive is it. For the time being I'm maintaining my support and taking her to try out a luncheon club. Even that I think she will hate but we'll see.

    Sending you the strength you need, & praying that you can get your Mum moved to a more homely EMI unit. Take care x
  15. Oxy

    Oxy Registered User

    Jul 19, 2014
    Jaycee, May I just let you know how sorry I feel for you although at times like these that may be little consolation. Demand a better placement and inform CQC and MP, local rag as previous posters have mentioned. Would ask them to keep your name confidential so your mother gets no retribution. Terrible that that should even enter head as a possibility.
    Grandma Joan I totally agree with your MIL but we must remember a massive heart/stroke attack is not a given and ones last days can be even worse with a partial one. Thinking of locked in syndrome and not being able even to turn.
    Very best wishes.
  16. copsham

    copsham Registered User

    Oct 11, 2012
    Such a gloomy thread - with reason! Jaycee I feel for you - it is so unfair!:(
  17. LYN T

    LYN T Registered User

    Aug 30, 2012
    Brixham Devon
    Oh Jaycee-I can understand your anguish; No-one should have to endure these conditions. Please, please follow some of the suggestions that have been offered.

    When I read such posts I realise that my problems could be a lot worse.

    Take care and have plenty of hugs from me

    Lyn T
  18. Jaycee23

    Jaycee23 Registered User

    Jan 6, 2011
    Thank you all so much for your concern and advice. I got quite emotional reading your kind words. Today I phoned her continuing care nurse who is not based in the home and told her everything I told you on TP. She was quite sympathetic and concerned and said she was very aware that mum is miserable and they are going to have the psychiatric team assess her again and her medication. She said the home have tried to move move on another floor which is quieter and more pleasant but mum attacked one of the residents and refused to go back upstairs as she wanted to get out the door. She said the home have difficulty establishing the triggers which cause mum to react very unpredictably. I said I felt she does not like the residents on her floor and does not understand when they come towards her she tells them to stop but they are not able to understand and continue to approach. I suggested a different home but the nurse said from her experience of the homes available unfortunately mum is in the best place. She is going to look at issues with staffing and unacceptable things which look neglectful. She also said the home is in the process of having new carpets and going to be decorated to hopefully make it a bit more loved and pleasant. I am glad she listened and said that if I feel nothing is changing to contact her again. She is going to ensure that mum is not left vulnerable and I think that it helped to have these issues out in the open not only for mum but the other residents who are being cared for too. Thanks again you lovely people x
  19. Wolfsgirl

    Wolfsgirl Registered User

    Hi Jaycee, I am so sorry you are going through this, I hope all is soon resolved satisfactorily for you and your Mum. I understand your anguish x Keep posting as I will look forward to hearing about improvements x

  20. Grandma Joan

    Grandma Joan Registered User

    Mar 29, 2013
    #20 Grandma Joan, Aug 7, 2014
    Last edited: Aug 7, 2014
    Hi Jaycee, I'm pleased you've had a positive phone call & that it sounds like someone is aware and things are being addressed a little at least.

    You mentioned triggers and that is so important to find out what does trigger aggressive behaviour.

    We found out that my Dad hated the door to his room being closed. He banged on the walls and the doors & windows, and even though wedging the door open was a fire risk The home agreed to do this for his wellbeing and we signed a form to say it was okay.

    Another trigger for my Dad was meal times as he didn't want to eat. This was a really difficult one.

    A third trigger was one particular "resident" with a rather gross nasty bark of a cough, my Dad would react to him, the home were aware of this and as much as possible kept them apart.

    Being in unfamiliar surroundings must be so frightening for someone with Dementia. Taking them away from familiar environment and people they know & love. This is why it was so heartbreaking to move my Dad from his own home. We can only imagine how frightening it must be for them.
    Maybe you could help your Mum move to a different part of the home as was suggested as she might feel less frightened if you move her and discuss the positives of the move with her?

    Its so very tough, take care x

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