1. Blue_Gremlin

    Blue_Gremlin Registered User

    Mar 15, 2006
    89
    Morecambe, UK
    Well last night rates high on my list of nights from hell.

    We got a call at about 11.30pm last night to say that Jean had been trying to get out of her upstairs bedroom window. This is because she was convinced she was not in her own home. She had wandered off earlier on and into someone elses house thinking it was hers and when her sister had taken her home she had become violent so they locked her in. Consequently she tried to escape through an upstairs window onto a corregated plastic porch roof. It wasn't until after this event that we were sent for. We live 20 miles away and so didn't get there until nearly 12.30am. Jean was sat there with her coat on ready to 'go home' as she put it. We spent a good two hours telling her over and over that she was home and that she needed to go to bed but she kept saying it wasn't her home and she was going home to her mother's house whether we took her or not. Finally at about 2.30am we managed to convince her to stay put and I had to keep telling her that we were staying with her in the next room. However, everytime we settled down she got up and tried to get outside again. That happened about 4 times before we eventually got her to settle in bed (fully clothed with her nightie over the top).

    She slept til about 1pm this afternoon by which time we had had chance to talk to her home help lady and got a doctor round - trouble is being a bank holiday it was an on call doc not her GP. She prescribed antibiotics as she said an infection can cause massive confusion and a sedative that the district nurse will come and make her take tonight.

    My biggest problem at the moment is her sisters, as apparently, we are evil and useless, we are doing nothing to help and they want her putting in a home, and they are now refusing to feed her!! I have no idea what to do - her support network is falling apart around me and I just don't know what to do for the best. :(

    Blue_Gremlin
     
  2. May

    May Registered User

    Oct 15, 2005
    627
    Yorkshire
    Hi Blue Gremlin


    We too get this, day & night, I feel for you... there's no answer and you go around in circles:confused:

    Motto on this one, never try to get help on a Bank Hol, you have to fight for it.:mad:



    Keep your chin up, you're doing the best you can in a rubbish situation, I have no ideas for you, I can't think for myself at the moment after an appalling weekend of traumas and locked doors but we'll keep on trying.
    Take care
     
  3. jarnee

    jarnee Registered User

    Mar 18, 2006
    181
    leicestershire

    Hiya Blue Gremlin,

    I've had a bit of experience of this. It is true that an infection causes mass confusion. It can make the AD "advance" by many years, depending on the severity of the infection. The 'good news' is that the sufferer goes back to "normal" when the infection clears up.

    Jarnee

    :)
     
  4. Blue_Gremlin

    Blue_Gremlin Registered User

    Mar 15, 2006
    89
    Morecambe, UK
    The only trouble with that is that the doc isn't sure it is an infection. She is just giving the antibiotics just in case. What if it isn't? :confused:

    Blue_Gremlin
     
  5. jarnee

    jarnee Registered User

    Mar 18, 2006
    181
    leicestershire
    I'm sorry, I don't know the answer to that :(

    I guess. like with everything else to do with AD, you cross that bridge when you come to it.

    Do let us know, won't you.

    Until then, { }

    J
     
  6. Áine

    Áine Registered User

    Might be an idea to call her regular GP tomorrow when s/he back at work and fill her/him in on the situation.

    My dad did the "going home" thing all the time before he went into care. Used to call me late at night or unimaginable hours of the morning to say that he'd been left "there" and they'd not come back for him, so he was going to set off home. No reasoning with him. Had to get up and trek across town to sort him out.

    It was that that led to GP and social worker getting dad into emergency respite care. I wonder if that's something that might help Jean (though I guess she won't like it any more than my dad did). Might give you some breathing space to think about the situation.
     
  7. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    #7 Amy, May 1, 2006
    Last edited: May 2, 2006
    Hiya Blue Gremlin,
    Sorry you had such an awful time.
    Right, lets take the' evil and useless' to be the ravings of hysterical women - but maybe very frightened women, who do not want to see their sister harm herself. By saying that they will not feed her they are exerting pressure on you to do as they see fit.
    Have you all sat down together and talked about what is best for Jean; how she is going to be kept safe? If her sisters are helping with her care, then you must all sit down together and discuss the options.
    Sorry this probably isn't what you want to hear at the moment.
    Take care.
    With love Amy
     
  8. sophia

    sophia Registered User

    Apr 20, 2006
    21
    Thinking of you

    That's all I can offer really. I think it sounds like hell. If it's not an infection maybe it's time for a reassessment and hopefully more resources. There must be social services involvement if there is a home help/ carer . Sometimes night care is available in crisis situations like this, although maybe sedatives will help Jean get back in the rhythm of night and day. But it's the being locked in thing that seems to have brought on the very frightening situation of her on a plastic roof. I think if Social Services (Duty care manager of the older person's team) are made aware of this they'll see it as a crisis. i guess they may say health are dealing with it but you need to press for re-assessment I think if this isn't due to infection. The argument against short term placement is that it it will be disorientating for Jean. The for is obvious, she will be safe and everyone gets a break. I don't have experience of the locking in, except I can see why people do it, but I do think she knew she was locked in and it was counter- productive. I know you can get doors alarmed to alert a carer but if she is alone at night, no good. Sometimes it's possible to get a 24 hr care package through Social services if it costs equal to a care home placement and usually no more. I'm not sure it's legal for them to apply that cost ceiling but I know they often do. It sounds like leaving her alone at night is risky. Unless this is a real one off. Maybe I am panicking!! Maybe regular sedation is the answer? I'm not sure, I haven't experienced it myself ( yet!) But mainly I wanted you to know I am thinking about you. Let us know how things go. x
     
  9. Dave W

    Dave W Registered User

    Jul 3, 2005
    268
    Bucks
    Get as much advice as you can

    Hi Blue Gremlin

    like Aine, this is familiar territory for me - my Mum was doing pretty much exactly this last summer. I see from earlier messages you already have some home care in place. Have you had the 6 week 'review' meeting to assess how well it's meeting needs? If not, request it now (even if it's early). If you have, request another one. I think you need to speak to the GP, CPN and SS directly, as it appears the situation is taking a downward turn from your recent posts. Fingers crossed, it may be an infection that has triggerred an increase in confusion, but it may not and you need to be prepared. What medication is she currently on? Does this include anything to control behaviour at all? (My Mum became very delusional at one stage, and was clearly hallucinating from time to time. An anti-psychotic did take the edge off this, and she remains on it at present.)

    I don't like to say it, as it may not be something that you're really willing or ready to hear, but it does sound as if you're reaching the stage where you need to at least contemplate respite care. If nothing else, it sounds as if it's increasingly difficult guarantee her personal safety, and that has to be a high priority. I know this is a very distressing tie for you, but try to take a step back and look at the situation as rationally as you can. She's not going to be 'well' just because it's a Sunday/Bank Holiday/you're unavoidably busy, so do what's needed to make sure she'll be safe regardless.

    (This sounds like a harsh message, and really isn't meant to be: just trying to talk from experience and phrasing it badly. I hope I haven't caused any hurt.)
     
  10. Blue_Gremlin

    Blue_Gremlin Registered User

    Mar 15, 2006
    89
    Morecambe, UK
    More info

    Hi

    Aine - I have tried to contact Jean’s GP but apparently he is not working until Thursday – not helpful!!

    Amy - There is no talking to her sisters as all they see is that they are doing everything and we are doing nothing. All they want is for her to disappear and for them to be free of her. They don’t see what is best for Jean just what is best for them. They bang on about family and loyalty and when I see the way they treat Jean it makes me want to scream at them. I know I am not there all the time and they are but in a way that helps me see the situation more objectively than they do.

    Dave – I didn’t know we are supposed to have a 6-week review but it is something I will look into with her care worker. She is not on any medication at the moment as the doc took away her old pills last time we saw him (she hadn’t had any new ones for about a year). He says she should be on aspirin, eye drops and simvastatin which I believe is for cholesterol but nothing to control behaviour or ‘treat’ dementia. She is now on an antibiotic on the off chance that she has an infection but the on-call doc only left her 3 pills yesterday and now I can’t get hold of her GP, have to call surgery again soon to get that sorted out. The on-call doc also gave her some pills to ‘put her to sleep if agitated’ but again need to check that out with her GP.

    Blue_Gremlin
     
  11. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Blue Gremlin,
    Again, you are not going to want to hear this, but that is their decision and must be listened to. If they do not want the caring role that they now have to continue in its present form, then if you do not feel Jean needs permanent care, you are going to have to arrange to 'fill in the spaces'. Will the sisters continue until you have had the opportunity to look for alternative carers - maybe if you could say that you will have alternative care in place in a month?

    I am trying to see it from the sisters point of view
    1) They are 'getting on' themselves, and maybe do not want the responsibility of caring; they want to be able to enjoy their latter years. Can't say I blame them.
    2) They may find Jean's behaviour too challenging for them to deal with.
    3) No doubt they are scared by the whole thing, and they may be scared it will happen to them next.

    I do know that I wouldn't have wanted my mum to have been in a house on her own when she was sundowning, or when it became unsafe for her.

    In your position I think I would have to be looking at alternative ways of caring and ensuring Jean's safety.

    Take care. You will work through it and come out the other side.
    With love, Amy
     
  12. Dave W

    Dave W Registered User

    Jul 3, 2005
    268
    Bucks
    Medication

    If she's on aspirin and anything that ends in *statin, it sounds like there are concerns about high blood pressure (that was my Mum's original cocktail too). Unless this has magically cured itself, I'd be surprised if they were withdrawn. Check with the GP, but ask why they were withdrawn if they were (if part of Jean's dementia is Vascular, continuing these may help to slow its progress, so it could be important on two counts).

    And Amy's points are important. You can't make others performing caring roles that they don't want, or don't feel capable of playing. But you do have to live with consequences of their decisions, both for you and for Jean.

    I can't remember if you said she's had a formal diagnosis (as its possible to involve care workers without a medical diagnosis on the basis of social need). Given the latest events, she should have a CPN allocated asap if there's not already one in place, and you should have a serious conversation with the CPN as soon as you can. It's easy to be squeamish about medication, but if recent events indicate how distressed Jean is getting (and her bevhaviour as a result), something to moderate her distress sounds as if it would be wise - it will improve the quality of her life (and yours).

    At the end of the day, Jean needs help, you can't provide all of it, and you're going to need help getting it put in place. The sooner you start, the better for everyone.
     
  13. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Hi Blue Gremlin

    It doesn’t seem five minutes ago that I was watching your posts with interest as we appeared to be in pretty similar circumstances re Jean and my own mum. I am sorry for you that things seem to ‘happening’ so quickly – let’s hope this is something that is transient.

    I’ve certainly taken on board DaveW’s and Amy’s comments (for my own benefit) as I know I am totally unprepared for anything similar happening to mum and really should be… down to Plan ‘Z’ I guess…

    Sorry I can’t offer anything except to let you know I am thinking of you. You have been so honest about your fears – and yet you have ‘come through’ with flying colours at every challenge it seems. I’m sure you will again!

    Big hugs, Karen (TF)
     

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