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. MandyW

    MandyW Registered User

    Oct 11, 2005
    24
    Newbury
    Hi Everybody,

    I used to use this site a lot about a year ago and it helped to read about other peoples views. I now need your advice again please!
    My mum is 55 and has had AD for about 7 years now, I found out how bad she had got yesturday when she was visiting me.
    My Stepdad still works and he has had some work near to where I live, so I have been looking after Mum.
    She has been progressively more and more tired and falling asleep often in the day, yesturday was particularly bad and she was dropping off when we were talking. Later on that day, we had to go to Tesco to get some bits (this is always a bit of a task as I have my 2 year old son and my 1 year old god-daughter with me) I have the kids in the trolley and I have to hold onto mum as she tends to wander off and get confused. Out of the blue she had a panic attack and I had to steady her as she felt faint, then she started shouting at me that I was stealing things and that I was a thief, She went on and said that I was using her to steal, thats why I wanted her that close to me. I didn't know what to do, mum has never been like that before. I just ran out of Tesco (with all 3 in tow)crying my eyes out, I was so embarrased and angry at mum.
    I haven't been able to stop thinking about it since and I feel awful but I'm so angry at my Mum, she knows that I would never do anything like that. I also feel bad as I know that she didn't mean it and that it's her illness talking, but i cant help it. I've realised how bad mum has got, why did this happen to her?
    She is so youing to have this illness and when people saw her shouting at me they probably believed her, and thought that I was a terrible person for dragging her around.
    I called my stepdad home at lunchtime to see her as I was worried about her feeling faint, I couldn't tell him about the accusations I felt like he has enough on his shoulders. We never get a chance to talk about this stuff and we're probably both suffering in silence.
    My Mum also sratches her face and has deep wounds that will never heal as she doesn't leave it alone. when we draw it to her attention that she's bleeding she can get aggressive in her tone and denies ever doing it, is this normal? She has scars all down her face.
    Sorry to go on, but it feels so good to let it out. My Husband's fantastic and my older children are very considerate to her needs, but it's affecting all of us now as I'm so down.
    Thank you for listening.
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hello Mandy, and nice to hear from you again, though I'm sorry about your recent experiences.

    Sounds to me as if Mum had an episode of sundowning, which is difficult enough to control in a home situation, but is disastrous when out, and when there are children there as well.

    If Mum had been sleepy earlier, she might have switched into the "it must be late, better be getting home to Mum and Dad" mode and that will have caused panic, and your trying to protect her by being close will have made you prime target, as the one who was stopping her going.

    There are medications that can help a little in some cases of sundowning, but you might be well advised not to go shopping late in a day.

    It may not be sundowning at all of course, but that would be my first thought, especially since the days are getting shorter now.
     
  3. MandyW

    MandyW Registered User

    Oct 11, 2005
    24
    Newbury
    Hi Brucie,

    Thank you for replying.

    I've never heard of 'sundowning' and I will definatly be aware of it in future. I think that it was such a shock as i'd never seen mum be that paranoid before and it hit home that "it's" getting worse.

    I've some other threads and wondered how you know which stage people are at, I dont go with mum to the hospital for her appointments so therefore only have limited information.
    Mum is really reluctant to go to any apppointments now, we have major problems getting her there and because of that it's distressing for my stepdad and now he's reluctant to go to. I asked him (My Stepdad) to take Mum to the doc's to see if they could do anything for her tiredness, maybe she's aneamic as she has trouble eating now and is not getting everything that she needs? I worry that sometimes AD is blamed for everything when it could be something else that isn't related.

    Sorry for the questions, You all seem such experts!!

    Thank you,
    MandyW
     
  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Mandy

    regarding the stages, have a look at http://www.agelessdesign.com/FAQ-Stages.htm

    You may be able to decide yourself; indeed you may be the best person to do so with your closer knowledge of your Mum. You should be aware that these are only indications and that every case is to an extent different from every other case.

    Regarding sundowning - there is at least one thread that talks about it http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?t=338&highlight=sundowning

    Mandy, we are not really experts, other than in the situation for our own relative. But sometimes the 'real' experts have a purely academic knowledge without day to day care experience. It is the baptism of fire that burns the experience into us.
     
  5. MandyW

    MandyW Registered User

    Oct 11, 2005
    24
    Newbury
    Thanks again Brucie,

    I have read the link that you sent to me and I would say that my Mum is at about stage 5 or 6. I think it's hard to gauge as everybody with AD seems to have variations of the symptoms, or is my Mum different?

    It's really hard as my Mum still seems aware of some of the mistakes that she is making, thats why she gets so frustrated and angry. I dont want her to get worse but if she did then maybe she wouldn't get so upset with herself and it would relieve some of her suffering. Does that sound awful of me?

    I didn't mean to offend you by saying that you're an expert, but you always give sound advice to everyone that posts and I appreciate that.

    MandyW
     
  6. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Mandy

    I didn't mean to offend you by saying that you're an expert

    good grief, you didn't offend me, it is more of a compliment.

    But it is just that new people to the site may think I actually am an expert in that I have been formally trained [anyone who reads some of the tosh I write will soon suss me out ;) ]. I have been trained of course by Jan, but it is practical experience of seeing the first signs, having nobody believe me, then caring for Jan at home, then at her care home.... it is one hell of a lump of experience.

    I just try to recommend things as I see them and others do as well. Between us all, I reckon we cover a lot of territory.

    everybody with AD seems to have variations of the symptoms, or is my Mum different

    the brain is a complex thing and the damage that is dementia hits fairly randomly in my opinion. Thus any one person may have some of the symptoms of another, but none of the symptoms of a third person. There are also different dementias with different characteristics. Jan has a combination of Alzheimer's and vascular.

    And yes, as their condition develops they either care nothing for the mistakes they make, or they don't know they make them.

    I tend to think they just say to themselves "darn it, is it that important, and what could I do about it anyway?" ...and we should follow suit.

    Each stage has its own pain and I wouldn't like to say which is worst. And worst for whom? Jan? Me? Again, does it matter? We just get on with it, as it is, at the time we have to.
     
  7. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Hi Mandy, and welcome back to TP! Since you've been away many of us 'newbies' have found, like you, how much it helps to read other's views.

    What a ghastly shopping trip, your Mum's outburst is bound to have made you angry, despite knowing it is the illness. I just wanted to say that you sound far from 'a terrible person'. I wonder if now might be the time to have that chat with your stepdad? Difficult though it might be, it might help to both look at how your Mum's condition has changed and to start thinking of ways to help you all cope with it.

    Best wishes,
     

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