1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

    Sam, our Knowledge Officer (Legal and Welfare Rights) is our expert on this topic. She will be here to answer your questions on Wednesday 26 June between 3:30 - 4:30 pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    9,222
    #1 DeborahBlythe, May 15, 2007
    Last edited: May 15, 2007
    Saw my mum on Friday: OK.
    Away Saturday
    Saw my mum on Sunday: Not OK. Very sleepy and has a chest infection. Ask the carers to keep an eye out for her overnight and please consider calling the doc on Monday. Nurse One agrees.
    Monday: Mum even sleepier. Can barely rouse her. Chest full of phlegm by the sounds of things. Anyone called the GP? No, Nurse One asked Nurse Two to think about it. Nurse Two didn't think it necessary. " She seems OK when she is up" ( Translation: "When she is up, we are so stretched that we barely notice the individual needs of our clients" I came in only last week and found her sitting in her chair, in her nightdress, looking absolutely awful, uncomfortable, bent forward and with no particular care being directed at her.)

    I'm beginning to wobble. The bumper is missing from the bed again. My mum's legs caught under the bedside a few weeks ago and she had some ugly bruises around her calf and ankles as a result. I've asked them to ensure the bumpers are always in place and was told this would happen and also that they would seek out longer bumpers as my mum is quite tall and the standard bumpers are a bit short. Long bumpers have not yet appeared.. I put the missing (short) bumper back myself. Mum's dress is all screwed up in a ball on the end of the bed. It's been a cold day down here, I had to put the heating on at home but the dress they had dressed my mum in was her thinnest summer one. The bedside lights in her room don't work.

    This is all about par for the course. There are always minor, irritating things that bug me going on, but tonight the fact that they don't seem to think she is ill when she is clearly drowsy and has a chest infection is winding me up something chronic. Consider for one frantic, wild-eyed moment, kidnapping her and and bringing her home, then remember house is frozen, I have no suitable equipment and no care in place and the room downstairs which she would have to inhabit has a mouse in it, newly discovered last night.

    They will check her vital signs and think again tomorrow.
    I go home before they have done the checks as I am tired and feeling waspish. Sit in Sainsbury's car park and cry. Ring the home. BP OK, temperature normal but feels a bit hot. Nurse Three agrees that my mum has a chest infection.
    They know I am bothered with them now and promise to keep me posted tomorrow.
    Feel like an over-anxious mother.

    I was offered 'pre-bereavement' counselling a couple of weeks ago and have not taken up the offer. ( "We've never done it before, you would be our first client. Yes, we are volunteers.") Feel a bit mean to turn them down but not really confident that they would help me. They would aim to 'help me come to terms with the fact that my mum is going to die'. Do I want to discuss my mum's forthcoming demise week after week? I don't think I do.
     
  2. Natashalou

    Natashalou Registered User

    Mar 22, 2007
    426
    london
    Very sorry

    to hear of this plight. I hope your mum improves soon. Its really the last paragraph im struggling with...pre bereavement??
    Im wondering who is going to provide this, and what training and qualifications they have to do so? This may be something some people would benfit from, but I dont think it will help me either....and if the person then does not "die" ..do we go on a refresher course six months later????

    I do however think the practical side of "what to do" is good to know..ive been through it when my dad died, and im not looking forward to doing it again. Mum, being the person she once was, has everything safely in a folder even down to funeral booked and paid for so I guess im "lucky".

    I dont think someone telling me..your mum will die and you will feel these emotions would help much..after all how does anyone know anything about the relationship etc to assess how an individul might feel??!!
     
  3. janetruth

    janetruth Registered User

    Mar 20, 2007
    563
    nuneaton
    Hi Deborah

    Hope your mum is more comfortable now and hope this continues, it's very frustrating when you feel your wishes are being ignored.
    Regarding Counselling, I was always under the impression that they are more of a listening service, for paople who have no-one to talk to, or their family and friends , do not understand.
    If I am right they can not tell you what to do or feel and are supposed to be confidential.
    They are good if you feel like OPENING up to your REAL feelings.

    I have never used one, but never say never.
    Take Care Bye for now
    Janetruth x
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,721
    Kent
    So sorry Deborah,

    I know just how it feels when your mother isn`t getting the care you feel she needs, in fact is not even getting a good basic level of care.

    They are vulnerable enough, you are vulnerable too, and both you are your mother deserve to have confidence in the standard of her care.

    Perhaps instead of `pre- bereavement counselling`, you should ask for `present care counselling`. That might make them sit up and take note.

    Love xx
     
  5. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    I googled "pre-bereavement counselling" and was surprised to see it has been going on for some years in some places.

    I suppose one advantage is that it would include the person who is (supposed to be) dying? I do know that when my mother wanted to talk about death we wouldn't let her, perhaps it would have been better if we'd believed her when she said she "wanted to die" or was "dying soon anyway" and let her talk about that instead of just denying it and making more long-term plans.

    In former times people would have been more used to death, for so many of us nowadays the death of our nearest and dearest is the first death we encounter closely.

    Lila
     
  6. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Hello Deborah

    Is there any way you can contact your Mum's GP yourself and tell him how concerned you are about your Mum at the moment.

    A chest infection can be very dangerous if left untreated do the staff at the home want to be accused of neglect?

    Have you tried again to put in a formal complaint to the home manager or owner expressing your concerns?

    Unfortunately, so often with AD, we have to fight every inch of the way to ensure our loved ones get the basic care they need, to have to fight for appropriate medical treatment too is a disgrace.

    My only advice is to start fighting hard, go to the home today and tell them you are staying until a doctor has checked your Mum over, while the doctor id there, speak about your other concerns regarding the standard of care she is receiving.

    I totally empathise with your wishing to wrap her up and take her home, I have felt like that on occasion too, not because she is not well looked after in the home she is in, just because she looks so sad and vulnerable sometimes and I want her to feel better..............sadly, having her living with us is not an option, we just can't afford to have me at home as a carer, I need to go to work and be paid a proper wage as a carer to special needs children............ironic isn't it!

    Kathleen
    x
     
  7. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,419
    Hi Deborah,
    I'm afraid I don't have any suggestions to add to those that have been made, but I just wanted to comment on the "pre-bereavement counselling". I would be with you on this one, in that talking week after week about the fact that my mother was going to die would be somewhat over the top. Apart from anything else, when you have an elderly parent, there is surely a level of expectation that this is going to happen anyway, and if that parent has dementia that in and of itself is almost a trial run for bereavement. Counselling for this seems somewhat redundant, no? Now counselling for a long and distressing terminal illness I can see but to focus on the bereavement aspect seems to be putting the cart well and truly before the horse.

    JMHO

    Jennifer
     
  8. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Deborah

    I'm so sorry that your mum is so ill. It must be tearing you apart, seeing that she is not getting the care she needs. When someone we love is as ill as that, surely they deserve all the care and attention the staff can give. They should also have more concern for the feelings of the carer.

    It certainly sounds as if she needs medical attention, and I'm surprised the NH staff haven't arranged it.

    I hope your mum is a bit better today.

    As for the pre-bereavement counselling, you know whether it would help you to talk or not. You know that your mum is going to die, possibly soon, possibly later. Do you want to talk about your feelings about this? If so, then go for it.

    On the other hand, you have good friends on TP, and if you want to talk about your feelings, we're always here. You know we care.

    I do hope things are a bit better today.

    Love,
     
  9. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya all,
    Personally I think "pre-bereavement" is a bit of a misnomer in the case of dementia - as the bereavement is an ever on going process.
    On Sunday I visited my mum after a three week break - her mouth was a little droopier, her body a little more contorted as she pulls her knees up to her chest - and yes I grieved a little more. I began grieving nearly 17 years ago now - when I first noticed her memory lapses. It has been a long journey, and still we travel on.

    I think that counselling can be beneficial. "I was always under the impression that they are more of a listening service, for people who have no-one to talk to, or their family and friends , do not understand." Makes it sound as though counselling is for Billy no mates!!:p :p No I think a good counsellor can help with insight into a problem, and help you to find your own way through it.

    Just some thoughts.
    Love Helen
     
  10. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    I agree, Helen. Counselling can be immensely helpful in finding your own way through problems. But you have to want to do it.

    Some people can talk to friends and family, some prefer to talk to an outsider, and some prefer to crawl into a hole and work out their own feelings. Nothing wrong with any of those, it's just a personal choice.

    I didn't realise your mum had been ill for 17 years. What a long time to suffer, and I also agree that AD is a long bereavement.

    Love,
     
  11. sue38

    sue38 Registered User

    Mar 6, 2007
    10,856
    Wigan, Lancs
    Deborah,

    I sorry your mum is poorly and I hope she is getting the care she needs today.

    I thought the point on the 'pre-bereavement' counselling was interesting. I agree that I wouldn't particularly like to talk week after week about someone's impending death, but that's a personal choice.

    I wondered however whether there might be scope for a more practical type of course. A death is so traumatic, even when expected, partly because in many cases, particularly with the death of a parent, it is the first time the bereaved has had to deal with undertakers, coroners, registering the death, solicitors etc.

    Planning and knowing what should happen might make the process less traumatic. I know of people who have planned their funerals down to the last detail and this has made it so much easier for the family, not having to make snap decisions when they are grieving. Many people pre-book (and pre-pay) for their funerals - a legitimate way of reducing your capital- and of making the time a bit easier for the family.

    Just a thought.

    Sue
     
  12. janetruth

    janetruth Registered User

    Mar 20, 2007
    563
    nuneaton
    [QUOTE "I was always under the impression that they are more of a listening service, for people who have no-one to talk to, or their family and friends , do not understand." Makes it sound as though counselling is for Billy no mates.

    Hi Amy

    If I made it sound like Counselling is for Billy no mates, then I apologise to any one it might have offended.
    If you read it properly, I did say ' FAMILY and FRIENDS do not understand'
    I know that there are some of my family and friends who can't understand where I am coming from. I am lucky to have such a good partner who I can talk to about ANYTHING.
    My point was that counsellers do not solve a problem, they help you face up to It.

    Hope this has not offended:)
    Take Care Bye for now
    Janetruth x
     
  13. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #13 Margarita, May 15, 2007
    Last edited: May 15, 2007
    yes I find that a lot , because they don't want to hear about it day or weeks or mouth in any year that go by, when I feel like talking about it.

    I think I would use it if , offered to me during those really last stages, but not talk about it week after week, like it has been said on hear. Just when I felt I needed it .

    I don’t feel my family understand, because its not they mum, just they grandmother. I feel that if it happen to me what is happening to my mother then and only then, would they really understand what I am feeling and can’t just surprises those feeling, put them away to the time come my mother really does die, talking to a human that is out side my family I do find more helpful when talking about 'pre-bereavement' , because they are not emotional attach to me.


    then I have never read a 'pre-bereavement post on TP ?

    Deborah grife can make us angery also , so keep haveing a go at them to give your mother the care that you feel she needs xxx,
     
  14. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    I have a close family and friends, but I can honestly say the only people I have ever talked to regarding Mum's illness that have truly understood are all my friends here on TP.

    So thank you all.

    Kathleen
    x
     
  15. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,419
    I don't know, Maggie. You could say that in a sense, every post on TP is about pre-breavement.

    Jennifer
     
  16. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    It is always a good thing for everyone to note that what we have in our minds when we write, and also the way we phrase and punctuate, can mean different things to different readers.

    People don't always construe what we write as we want them to, and that is not necessarily anyone's fault. [boy, don't I know, having written stuff that has been read completely differently from 'my' meaning :eek: ]

    ... just stating a fact of life, from my experience.....:)
     
  17. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Maggie, there have been many 'pre-bereavement' posts, and entire threads, on TP.

    Everyone who has posted about the last days of their loved one has received 'pre-bereavement' support. And the posts have been so moving for so many of us.

    One recent example is janed's thread, Mum is coming Home. I also remember very clearly Wendy/Mel's thread when her mum was dying of C Diff. They both said it helped them to post, and it also helped us to understand what they were going through.

    There's more than one form of counselling!:)
     
  18. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    9,222
    Many thanks for all the responses here. Just a quick update. They called in a doctor this morning and he prescribed antibiotics the first shot of which she took this evening. She was still very drowsy and chesty and seemed to have eaten and drunk very little during the day, so I set about trying to coax and encourage her, and after a while she rallied and ate a few mouthfuls of this and that, coughed prodigiously. then sipped a few swigs of this and that and then just went back to sleep. At one point I went out of the room for something and when I returned, she awoke, all smiles and said " Oh, it's my Debs!". I won't relate my reply because it does me no credit. :eek: My main triumph was getting her to spit up some gunge a couple of times.
    Left her resting fairly peacefully with some colour back in her cheeks, and a faint smile on her face.
    The bumpers (short) were in place. The bedside lamp worked. Wonder if they read TP threads, any of them?:)
     
  19. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Deborah, that's such good news! I can't imagine what you said, but I'm sure it was expressive!:eek:

    You should sleep so much better tonight.

    Love,
     
  20. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,721
    Kent
    Hi Deborah, I`m so pleased you were able to make your mother more comfortable.It must have helped you as much as her.

    Take care, love
     

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