1. Michelle-A

    Michelle-A Registered User

    Feb 5, 2005
    27
    Essex
    #1 Michelle-A, Feb 27, 2005
    Last edited: Feb 28, 2005
    Hi, I've just got back from visiting my mum as she has been admitted to hospital and I am very scared and upset. I feel very angry at the moment because my mum was supposed to be being looked after in the care home.

    I went to visit her last Monday and was shocked to see that she'd lost even more weight. I came home that night and got a call Tuesday morning that mum had been admitted to hospital because they were "concerned". I had mentioned to the "nurse" at the home when I was there that I was worried mum was likely to be dehydrated because of her lack of food and drink intake. He disagreed and said "no your mum is not dehydrated, we can tell by pinching her skin" They had also said they called a doctor in on several occasions to check mum over and he said she was fine, there was nothing to be concerned about it was just the normal progression of the AD and parkinsons.

    We went to visit mum in hospital over the weekend (just got back - it's in Manchester, we're in Essex) and she has been on a constant saline drip for SEVERE dehydration, she has had to have THREE blood transfusions, she is anaemic, has had a high temperature, on the highest strength anti-biotics for an infection and they have also found gall-stones and has a cloud over her liver. She has been crying for a long time at the home now - clearly and obviously in pain but hasn't been able to tell us and they told us she was fine. The home still insist she was not dehydrated!! Her stomach is extremely bloated - like malnutrition. I'm in bits. We had to come home to sort a few things out but are going back up this week cos I just want to be with her. They have said they couldn't operate on her because she is too weak.

    I'm so scared and upset. Me and my sister feel we are to blame for moving her to the home. Ever since she's gone there she's gone downhill. I can't cope with the guilt. A couple of months ago when she could still speak she was begging us to help her but couldn't tell us what was wrong. I feel so upset that she's been in all this pain for all this time and no-one has helped her. She mentioned her stomach ache a long time ago and we told the home and they said there was nothing wrong. I feel they put everything down to the dementia - that she was crying because of that but really she was crying cos of the pain.

    I feel like I will never be able to forgive myself for allowing my mum to go there. I can't go on. I can't handle seeing what this disease has done to my mum. She's only 53. I hate it so much and feel so angry and bitter. I don't see the point in anything anymore and hate everything.

    I don't know what to do. I feel angry with the home at not admitting her sooner when she wasn't eating and I feel angry with myself and that it's my fault. If she'd have still been here it wouldn't have come to this!!!!!!!!!!
     
  2. Chris

    Chris Registered User

    May 20, 2003
    243
    Dear Michelle

    I'm so sorry this has happened - I hope one of the moderators will be on here soon - as they always know what to say.

    I just had to reply as there are no other members logged on just now.

    (I think a lot of people look at the Support for People with Dementia and their Carers section more than the other sections like this one - so if you want a quick reply post there perhaps).

    Take slow, deep breaths and be kind to yourself . We all do the best we can at any given time - looking back its too easy to forget all the pressures & influencing factors at the time.

    Hang on there - we're all with you & a lot of us have or still are feeling like you over similar happenings - (that doesnt help I know) & take one day at a time - now you Mum has a diagnosis she will gain strength hopefully soon and we will all be willing her to recover quickly.

    Thinking about my experience - with Mum & hospitals & worrying 24/7 about the care in the 'care' home - I'd say - right now - concentrate on being with your Mum - when you can - she will want to know you are OK (Mums are like that !) as to what to do about everything else - take that in your stride a bit later.

    Take great care of yourself and keep in touch. Chris
     
  3. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Oh Michelle, I am so very sorry to hear what has happened to your poor, poor, little Mum. Your post made me cry and so very angry too. Thank the Lord you now have her in hospital where they are at last taking a look at all her problems not just the dementia. Oh how my heart bleeds for you all. If she is on a drip and they have done some transfusions, she should be strengthened, hopefully enough to allow them to further investigate and correct the conditions you mention. This is just so awful, for her and for you as a family, because you have put your trust in that home and now you feel truly let down. Your Mum is so young too. We have a moderator, Brucie, his wife went down with dementia when very young too, I hope he will be able to advise you and share a bit about that soon. I know it's hard, but if you can, try not to blame yourself too much, after all, you put your trust in that home, you mentioned your worries to them. They are at fault not you. I know that is easier said than done from bitter experience on my own part, but you really cannot take the blame for this. Your Mum is now being cared for, she is, I am sure, also being monitored to ensure she gets pain relief if needed. The main thing is that they are aware of her problems and are dealing with them. Of course you want to be with her as much as you possibly can, this is natural, especialy in view of what has happened. When you are with her, give her lots of love and reassurance. Ask the staff to explain often, to her. And ask them to explain to you exactly what is being done to ease her pain and what their aim is in the long term. Obviously they won't be able to cure the dementia, but if they can sort the other problems it would go a long way to making your Mum's life more comfortable. Please try not to keep beating yourself up over what could/should have been, the main thing is to move forward now, get your Mum over these problems and plan for her future. Please keep us posted, thinking of you, sending you a big hug, please give your Mum a kiss for me, love She. XX
     
  4. Vik

    Vik Registered User

    Jan 29, 2004
    12
    Derbyshire
    Hi Michelle

    This is so terrible for you. You must be heartbroken. I am so shocked at the treatment your mum has recieved, particularly as I always thought the home she is in was OK when my dad was there. They have let you down really badly.

    Please hang in there. Give yourself time to be angry and upset, it's completely natural. But your mum will hopefully be on the mend from the physical problems she has encountered soon and she will want to see you smiling. You have come so far and have done so well. Don't let AD defeat you now.

    Be kind to yourself. I know what you mean about the guilt. I don't know anyone who has gone through the AD hell without feeling guilt. But, the fact is that you have done your best and that counts for so much.

    I don't really know what to say to you either, but wanted to say something! Keep writing/talking.

    Lots of love Vik x
     
  5. Michelle-A

    Michelle-A Registered User

    Feb 5, 2005
    27
    Essex
    #5 Michelle-A, Feb 28, 2005
    Last edited: Mar 6, 2005
    Thank you for all your kind words. I know you all have your own problems to deal with, so I don't like to go on about mine too much and bring anyone down. I'm just finding this increasingly difficult to cope with. I just feel like what's the point in anything if I haven't got my mum around to share things with. I feel so lost.

    All I keep thinking about is how my mum kept saying that we must hate her for moving her to the home when she went to live there. I can't bare the thought that that is what she probably still thinks. I hate myself for all the times I'd lose my temper with her - she would never discuss what was happening to her and how she was feeling in the early days. I wish we opened up more - think we were all in denial.

    Me and my sister are going up to be with her on Wednesday. The hospital has been great and the doctors have called us personally to tell us what's going on. I spoke to the doctor today and he said she will be having a biopsey on her liver and a CT scan. He said it could be an absess on her liver or something else!! I just wonder if her lack of nutrition has caused problems with her organs? is this due to the Dementia or Parkinsons?!? I feel confused and wonder why? It's bad enough my mum having AD but all this other stuff aswell? it just doesn't seem fair, what has she ever done to deserve this life. Me and my sister have said that we look at our mum and wonder where is she? there's something else in there taking over my mum and working it's evil-ness through her whole body, it's not my mum! Sorry if it sounds depressive, but that's what I'm feeling right now!

    It'll be easier when we go there cos we gotta make decisions for her and give our consent, it's so difficult to hear all this on the other end of the phone.

    I will let you know what happens. Thanks again for all your kind support, it really means so much.

    Love Michelle x
     
  6. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Michelle, never worry about sounding depressive, we all do at times. Use TP to get those feelings out, share them, don't leave them inside to eat you up. You describe so well that feeling of your Mum not being there, this is something that we all seem to say about this awful illness. Try not to dwell on the past, the circumstances were way beyond your control, the illness took over and your Mum had to be found a place of safety. Don't let the illness put the blame on you, it's not your fault. I sincerely hope that your Mum's physical illnesses can soon be sorted out, for all your sakes. This is worrying enough when the person concerned can relate to things, in your Mum's case it is a living nightmare for you all. Hope all goes well when you visit your Mum, thinking of you, love She. XX
     
  7. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear Michelle, what can I say to comfort you. You and your sister must be going through such torment, but hold on to the fact that everything you have done for your Mum has been with her best interests. Please don't beat yourself up over this, just try to see Mum whenever you can and give her lots of hugs and reassurances. My thoughts and prayers are with you, love Connie
     
  8. Margarhett

    Margarhett Registered User

    Apr 30, 2004
    22
    Manchester
    I was really sorry to read your letter when our loved ones go to live in these homes we want and expect them to look after them, and I have to say some are ok but others are disgusting places that should be closed.
    I live in Manchester and was devestated when my dad went to live in a care home, after looking at over 100 I can say that I wouldn't let an animal live in some of them and the one chosen we thought was alright - wrong they starved my dad too and he ended up in hospital also and I was told he might not live the night, he lived for 12 months I made an official complaint about that home and fought for him to go to another place after they refused to let me take him home.
    In the Manchester area there is a speicalist home for early onset people, there is also a fantastic early onset team and you should talk to them for advice if you want I can give you their number.
    While I can understand your sorrow now is the time to make sure that your mum dosn't have to go back to that dreadful palce, speak to the team for support and make a complaint as abuse of vunrable people is a disgrace.
     
  9. mandyp

    mandyp Registered User

    Oct 20, 2004
    150
    Glasgow
    Oh Michelle, so sorry to hear what's happened to your Mum, I've just been online tonight and hadn't seen your post. Don't know what to say to make you feel better, but I'm thinking of you and please, please try not to feel bad. Everything you've done is because you love your Mum and it has always been her that you've put first. With regard to the whole thing about 'what your Mum's ever done to deserve this'....wish I knew the answer to that one, but we're both in the same boat on that one.

    My thoughts are with you, your sister and your Mum. She is in the right place now.

    Take care,

    Mandy
    X
     

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