New member today - sharing good and not so good news

Discussion in 'ARCHIVE FORUM: Support discussions' started by germain, Jul 7, 2007.

  1. germain

    germain Registered User

    Jul 7, 2007
    342


    Hello everyone,

    I've been reading this site for a couple of days and its only now that I realise that we have been incredibly fortunate in our experiences- even tho' at the time it hasn't felt so. I think I've a few bits that others may find helpful and would like some "words of wisdom" for another dvevelopment.

    One thing that has really helped was that both parents signed Power of Attorney forms many years ago when they were really fit and about to travel abroad for a while - hubby and self are going to do this soon as well even tho' we're still in our fifties - saves so much hassle and anguish for the kids !.

    Mum is 85 now and was diagnosed with Alzheimers around 4 years ago - went straight onto Reminyl - thanks mainly to the efforts of my incredibly pushy sister !
    So lesson one for us was that if you don't absolutely insist you can be sidelined.
    (and how NICE can say it doesn't help I just don't know)

    Her dementia has worsened over the last three years or so but very slowly. She has just about managed to remain at home during this time with a lot of support - a daily carer and two days a week at a day centre - which has been wonderful in keeping her socialised and a bit active - can't recommend these places highly enough. Even tho' she moaned non-stop about having to go out , the reports from the Day Centre Manager were that once there she joined in, ate well and appeared to enjoy herself !

    Over the last few months however things started to deteriorate - ending up with her spending most of her time sleeping in an armchair, being very difficult to get dressed at all, smoking like a chimney and totally incontinent - which she didn't seem to notice. Even tho' the carer left her lunch she wouldn't eat it and was nigh on impossible to move. (we also visited daily ) Eventually she was admitted to hospital suffering from some malnutrition, severe dehydration AND a severe urinary infection - ( which apparently can have a terribly effect on dementia ) we knew that things couldn't continue as they had !

    We have been incredibly fortunate in getting her a place in an Assisted Living Scheme - ( not allowed to advertise I know but this is run by a very respected national organsiation) again mainly due to huge efforts on the part of my sister - the CPN, Day Centre Manager and her social worker all supported this move and the hospital were adamant she couldn't return home. She's been there three weeks now and touch wood its like seeing a totally different woman -for a life long depressive she's quite cheery, clean, well dressed and well fed. (it helps , that with very little memory of course that she can't remember too much about her old home ) She has her own flat, with carers in four- five times a day, is taken down to the cafe for lunch and has a carer who stays with her at teatime to see she eats ( she seems to only ever eat in company) The routine is really helping. She has also forgotten that she smokes - which is a huge blessing.

    Despite all this we have a fairly new problem arising - she wants to sleep all the time regardless of where she is- even fell asleep at the doctors surgery last week. Have done a bit of internet research and its obviously another progression of the dementia but others have suggested it could just be her learned coping reaction to living alone and being quite ill or even just stress. (poor eyesight means that she can't really read or watch TV) MY QUESTION IS - has anyone out there got any experience of using light therapy to help with this ? ( a SAD machine)

    Sorry to everyone who has ploughed through this huge epistle - I'm not usually this long winded - but just realising that we're not coping alone has been an eye opener and I'm starting to count my blessings - our experiences, although really awful sometimes and tremendously guilt inducing haven't been nearly as bad as others.
    All the best to all carers .
    Germain.x
     
  2. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    3,518
    They don't. They just say that it doesn't help enough to be "cost effective". The translation of "cost effective" is "when the patient costs the NHS more without the drug than it costs the NHS to treat the patient with the drug".

    In other words, until the patient becomes so ill that they require lots of care from the NHS, they are recommending that the patient does not get treatment.

    Exactly the same calculation is made for the drugs for macular degeneration; let the patient go blind in one eye, because they can function almost as well as a fully-sighted person. Treat when they are at risk of going completely blind, because a fully blind person costs more than the treatments do.

    NICE are fully aware of the beneficial effects of the cholinesterase class drug, they have just said that it's only "cost effective" (see above) to use them in the "moderate" stages of the illness.

    All the grief etc etc that loved ones go through watching a patient going through in the early stage cost the NHS nothing, so are left out of the equation. If you look on the NICE website, the sections that cover the benefits to carers, family etc are simply marked "Not Cost Effective".
     
  3. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Germain

    Welcome to TP.

    My experiences with my husband are similar to yours with your mum. He was prescribed galantamine from day one, and it has certainly slowed his progression. We have so far been very lucky compared with so many others.

    John doesn't fall aleep much, but he does start wanting to go to bed from mid-afternoon. In his case I think it is boredom. Like your mum, he can't read, doesn't understand what is said to him, and it is so hard to find things to keep him interested.

    I haven't tried light therapy, John isn't depressed, just bored, so I can't help you there. Unless your mum is depressed, I don't know if it would help, but you may feel anything is worth trying.
     
  4. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Hello Germain

    I don't have any experience of light therapy so can't help there Im afraid.

    My Mum is in the late stage now and eats only when prompted, drinks with a lot of encouragement, speaks in short bursts of up to 5 words, most of which are not linked.

    She sleeps a lot now too, but the staff at the home say it is not true sleep, but a way for her to cope when nothing around makes sense to her.

    I think they may be right as I can go in and she is seemilngly fast asleep, but she opens her eyes and is alert immediately.

    Maybe she is just switching off for a while, who knows?

    Kathleen
     
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,586
    Kent
    Hi Germain, welcome from me too.

    Your mum sounds remanrkable if she`s still coping on her own, even with an excellent care package in place.

    Respect to you and your sister for getting her the help she needs.

    Has your mum been tested for Diabetes? One of the symptoms is being very sleepy. It`s just came to my mind when you said she even fell asleep in the doctor`s surgery. That is unusual.

    Otherwise it could be the result of boredom or simply ageing.

    I would definitely ask for a blood test.

    Please let us know how she gets on.
     
  6. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Hi Germain

    My mother was in what sounds like a very similar living situation to yours. She would still be there if she hadn't become totally imobile following a sequence of falls.

    My mother's mantra, even before her strokes, has always been "when the going gets tough the tough go to bed". I think it probably is a learned response to dealing with life but also, I think when you get to my mother's age (90) it's not an unreasonable response. Before her strokes she explained it as a form of escapism, but also, that frankly she was tired. Definitely, she was getting up several times a night with bladder issues, and a suspect that that doesn't lead to a restful nights sleep.

    When she was in hospital they wanted to refer her to a specialist becasue she was sleeping so much, and they wre concerned she was depressed. I pointed out that yes, she had been depressed and thats why they were giving her anti-depressants, and yes she did sleep a lot but at 90 I didn't think that was unreasonable. Having spoken to the mental health nurse, she confirmed my view, and also, the nursing home told be that it is very usual. Like your mother, mine can no longer read or watch TV, so I suspect she is bored, but to be honest, there are worse ways of whiling away your time than by sleeping: at least in her dreams she's up and around and mostly happy.

    I would take on board what Sylvia said though - my mother's never actually fallen asleep in a doctor's office, and that seems a little unusual.

    Jennifer
     
  7. sue38

    sue38 Registered User

    Mar 6, 2007
    10,856
    Wigan, Lancs
    Hi Germain and welcome to TP.

    My Dad has always had a tendency to nod off at a moment's notice. As I've told others before, once, pre-AD, he fell asleep in the middle of telling a joke.

    Since he was prescribed and when we are going through a bad stage or he is in unfamiliar surroundings, he will close his eyes and pretend to be asleep. If you ask him if he's OK he doesn't respond, but asks him if he wants a gin and tonic and his eyes snap open and he immediately says 'ooh, yes please!':)

    I think that he just 'tunes out' and uses this as defence mechanism when he is stressed or can't cope with something that is out of his routine. I wondered whether your Mum falling asleep at the doctor's surgery might be a reaction to being in an unfamiliar place surrounded by strangers? Other times it may be boredom.

    I have no experience with a light box but may be worth a try if not too expensive.

    Sue
     
  8. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    3,518
    Sleep is the natural way that both the body and mind heal themselves IMHO, and it's also a natural "escape" mechanism. It is therefore hardly surprising that someone with dementia may want to sleep a lot.

    Of course, every person is different. It could be a pyschological thing, it could be physical changes in the brain affecting the sleep mechanism, it could be a response to the body or the mind demanding "let me rest to try and repair myself", it could be lack of stimulation. Excessive sleepiness can be a symptom of depression.

    To be honest, it doesn't sound as though it is causing a problem. Personally speaking, I would just let it go. If Mum is peacefuly snoozing, then why worry about it?

    If Mum were sleeping in the day and this resulted in her bouncing around all night, then that could be a problem. Otherwise...

    My Dad went through a stage of spending half the day snoozing, and then refusing to go to bed until very late and then only sleeping a few hours. This was, as you can imagine, extremely wearing for mum and myself who were permanently exhausted. Fortunately Dad has now re-established a "normal" sleep pattern...what a relief!
     
  9. germain

    germain Registered User

    Jul 7, 2007
    342
    Diabetes has been ruled out. Will suddenly wake if sweets or ice cream are on offer but can sleep so suddenly that carer thought narcolepsy- also up sveral time in night for toilet etc

    QUOTE=Grannie G]Hi Germain, welcome from me too.

    Your mum sounds remanrkable if she`s still coping on her own, even with an excellent care package in place.

    Respect to you and your sister for getting her the help she needs.

    Has your mum been tested for Diabetes? One of the symptoms is being very sleepy. It`s just came to my mind when you said she even fell asleep in the doctor`s surgery. That is unusual.

    Otherwise it could be the result of boredom or simply ageing.

    I would definitely ask for a blood test.

    Please let us know how she gets on.[/QUOTE]
     
  10. CassElle

    CassElle Registered User

    Jun 7, 2005
    45
    Blackpool
    Hi Germain

    Mum is in the later stages of AD and like your mum can fall asleep on a clothes line!!
    She has been like this for nearly 3 yrs and for the same period has suffered chronic UTI's. It is without doubt as far as my mum is concerned that this intense sleepiness
    is worsened by the UTI's. She also fell asleep in the Doctors surgery last week
    having her over 75's health check. The following day the result of a water sample came back showing yet another infection. I have to feed her and its not unusual for her to fall asleep before i have taken the spoon out of her mouth.

    She also has Diabetes but she is never as sleepy as when she has UTI or chest infection.

    Hope you get her sorted. She sounds to be in an excellent placee.

    Take care
    Casselle
     
  11. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Hi Germain, another welcome ...

    My Mum behaves in a very similar way to yours ref. sleeping quite a lot, and at odd times. She's 88, and I think it's not unusual, especially as she also is having difficulty with her eyesight (age-related macular degeneration) so reads very little & has difficulty following TV programmes. Has an optician seen her, to define the reason for her failing eyesight?
     

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