Any ideas or advice?

Discussion in 'ARCHIVE FORUM: Support discussions' started by mufan, Mar 9, 2004.

  1. mufan

    mufan Registered User

    Mar 9, 2004
    4
    I’ve been thinking about what to write in this message and I think it may turn out to be quite long so please bear with me!

    My mum who is 77 has recently been diagnosed with the early stages of AD, but in some respects my sister and I aren’t entirely convinced by the diagnosis – denial?! I wonder if our experiences have been shared by anyone else.

    Let me explain some of the background. My dad and my mum’s sister died within a couple of months of each other around 7 years ago and we quickly realised that mum wasn’t coping very well, but we assumed that was due to grief and depression. It was probably 2 years before we started to think it might be more than that. My dad had always dealt with everything to do with the house, garden, finances, etc and as Mum is partially sighted my sister and I expected we would have to continue to support her with those sort of things, so a gardener was sorted out, direct debits set up, etc. (I should say at this point that I live in Bristol and my mum, sister and family live in Nottingham – so my sister bears the brunt of things). The first thing we noticed about mum was that she was very uninterested in the home, happy for things to be arranged for her but didn’t want to take any part in the decision making. As I said at this stage we still thought it was grief/depression and hoped it would lift as time went by. It hasn’t changed and one of the things my sister finds most frustrating is that mum doesn’t want any involvement whatsoever with deciding what needs doing. She doesn’t care who does it or what it costs as long as she doesn’t have to know anything about it.

    As it’s progressed it has become clearer that she isn’t really cleaning the house, she doesn’t do much washing and she doesn’t eat properly. Although if we talk with her about these things she tells us that she is following a “normal” routine and I think she really does believe that. The conversations are certainly very plausible. Her memory is definitely not what it was – the same topic of conversation comes up time and again in a very short time, she gets confused about the day of the week (but who doesn’t sometimes?) and when she stayed with me in Bristol at Christmas she had a couple of episodes where she got quite disorientated and thought she was still back in Nottingham – although she’d had a couple of sherries at that point. However there are some short-term memories that do stick in her mind. My cousin phoned her unexpectedly to wish her a happy birthday last month and she remembers that, and she is still quite good with the names of people she only meets occasionally e.g. my partner’s brother and family who she only sees maybe once a year. Other memories just disappear within a day or less. Again it frustrates my sister that if, for example, a plumber or electrician needs to call Mum can’t remember why they’re coming or what they said while they were there. Given that she can remember some things it sometimes seems as if the failing to remember is deliberate, especially for things she doesn’t want to deal with like looking after the house. On one occasion she actually wouldn’t believe that a flat roof in her house was leaking, even though you could see it dripping and she kept moving the buckets that my sister put to catch the water – she said they were untidy!

    Of course memories from years ago are all very clear.

    Mum insists that she eats well and buys the things she likes, but this came to a head when she was diagnosed with severe anaemia and after some hospital tests they concluded it was completely due to poor diet. The staff in the hospital also commented on Mum’s memory. After that she had a cataract operation and again the staff commented on her memory, to the point that the day after the op she couldn’t remember why she was in hospital. I phoned her while she was in hospital and the staff nurse talked to me about their concerns and in a way it was reassuring to know that they were seeing the same things we were.

    At the moment mum is still living in her own home, in the same road as my sister, but my sister has been helping her daughter who is having chemotherapy so she’s caught in a real carer’s dilemma. Mum goes shopping locally, collects her pension, can catch the bus to the next town and it seems that recently she has organised a visit to the dentist for a repair to her dentures. Mum used to go on short holidays with my sister’s mother-in-law but she is in her mid-eighties and found it a bit too much being responsible for mum on the last holiday. Up to a few weeks ago they would meet for coffee and shopping once a week but Mum forgot to go a couple of times and it was total panic stations, so they aren’t doing that so regularly at the moment. But to all intents and purposes it could appear to be pretty normal.

    My sister has involved Social Services and the Community Psychiatric Nurse, so Mum has had an assessment and seen a Consultant and they have concluded it is early stages of AD. She goes to day care once a week and is having meals delivered on the other weekdays. She doesn’t really like having the meals because she says she doesn’t have any reason to go out shopping, but if she didn’t have them we’re sure she’d live on just chocolate and biscuits.

    I suppose my questions are:-
    Does this sound like early Alzheimer’s?

    Can AD progress so slowly over 7 years or so, or could we be right that depression or something is a factor? There has been some deterioration over the years, e.g. the disorientation only happened this year, but all the major sign have been there right from the start and maybe longer, we don’t know how much dad covered up.

    How do you get the doctors and nurses to consider other possibilities? They seem very certain that they are right.

    Should we be hands-on in trying to make sure Mum get proper meals and other care, or when she tells us she is fine and looking after herself should we respect that, even if we believe that big parts of that routine are imaginary?

    Thanks for taking the time to read this, any advice or comments gratefully received.
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    That's a long story and I will only make a brief response as I have a meal in the oven!!

    In my experience most of the medical people don't actually know for sure what many so-called Alzheimer's patients have in reality. They know there are signs of memory problems and that some form of dementia is involved, but there is no absolute test to show what it really is - or so it seems to me.

    I was told my wife was depressed. Then it was Alzheimer's. Later it was Alzheimer's with vascular as well. Then transient ischaemic attacks were mentioned as separate entities.

    To tell the truth, it doesn't matter much what you call it because the person has a dementia. It can be confusing - I could never figure why Jan's illness was not a slow progression, but a series of steps. Now I am told this is because each step down is caused by a stroke or strokes. I'm not sure whether I am not told exactly what is wrong because they don't know, or because they simply don't think to tell me.

    In Jan's case, the depression was caused by her realisation that something was badly wrong with her and it took ages to persuade the doctors that this was the case.

    In the early stages things come and go, and even in the later stages suddenly the patient will say something you thought had been lost long ago.

    I found that Jan wanted to withdraw from most things over time, decisions etc. I guess that is not unusual.

    Not much help, I'm afraid, but I found I was often more confused than Jan, as I tried to make some sense of it all!

    Best of luck.
     
  3. Ruthie

    Ruthie Registered User

    Jul 9, 2003
    114
    South Coast
    I recently met a retired GP who said that in his experience (which I would think is extensive) it was very usual for dementia patients to present initially with depression and only gradually show the symptoms of Alzheimers etc. It may be of course that on some level they know that something is going wrong, or that they aren't coping as well as they used to, and this causes the depression, or it may be a direct effect of the physical and chemical changes in the brain.

    I understand that the speed of progression of dementia can vary considerably and is unpredictable. My husband (aged 60) has had dementia for 8 or 9 years now. He posed quite a problem in diagnosis, and after extensive attempts at diagnosis (including several admissions to the National Neurological Hospital), just about everything else had been ruled out and so he was given a diagnosis of "Atypical Alzheimers" about 2 years ago.

    His disease progressed slowly for the first few years, but just over a year ago it seemed to accelerate and has continued to do so. I had to let him go into an elderly dementia unit in hospital just before Christmas, where he has remained as his behaviour could not be coped with in a care home. He has continued to deteriorate considerably since he has been there, although how much is due to the progression of the disease and how much to the amount of sedatives and other medication, it is difficult to tell. The consultant said that it must be very distressing for me to see that they had apparently aged my husband by 20 years since he was admitted - he's right! He is now walking with a stoop, shuffling and doubly incontinent - none of which applied before he went into hospital.

    I can't blame the care there as he can be very disturbed and violent, and although they are trying to reduce the amount of medication, he starts kicking and lashing out when they try to help him get dressed or to the toilet etc, and they can't be expected to risk injury. I find it very hard to see him in the state he is in, and he is usually virtually unable to communicate. I was quite pleased today when I visited - he was a bit more "with it" than usual, and I was pleasantly surprised that he was able to make his views known in a series of well-known Anglo-Saxon expletives when I suggested that we sit in the patients' sitting room - it's the most verbally fluent he's been for weeks!

    So it does seem possible that dementia can progress fairly slowly for a number of years, but this doesn't mean that it won't speed up at some point.

    Sorry this probably isn't much help, but you wanted to know what other people had experienced and it may just help a bit to know that what you are experiencing isn't unusual, although this disease seems to present itself in so many different ways that it seems impossible to say what is typical and what isn't.

    Kind regards

    Ruthie
     
  4. mufan

    mufan Registered User

    Mar 9, 2004
    4
    Thanks for taking the time to read my "essay" and to post your replies.

    On a slightly different topic:-

    Does anyone have any thoughts about someone with early AD moving into sheltered accomodation? Our social worker and CPN think it's a viable option for Mum. She would hopefully get more company and it would relieve some of the stress of looking after her house. Mum herself sometimes likes the idea, other times she's not so keen. She agrees with all the advantages but doesn't want the upheaval of moving. My concern is that moving might accelerate her condition, or at least make the problems more obvious, if she moves from a home where she's lived for forty years.

    Any thoughts or experiences?
     
  5. Charlie

    Charlie Registered User

    Apr 1, 2003
    161
    Hi Mufan,

    I think that everyone's situation is very different so you have to make a decision that is practical for everyone involved. I think that you are right to consider that the upheaval may make things a little worse for your mum at least until she settles in. My only advice would be ensure that you find the right place not just for the current situation but perhaps when things get a little more 'difficult'. It depends on what the staff at the sheltered accommodation are willing to do in the long term. It would just be good to find the right place and avoid another move at a later date. But as I said, everyones situation is very different, so good luck with you search.

    The following fact sheets may help:

    http://www.alzheimers.org.uk/Caring...ntial_and_nursing_care/info_choicesincare.htm

    http://www.alzheimers.org.uk/Caring...ntial_and_nursing_care/info_selectingcare.htm

    Cheers
    Charlie
     
  6. Kerry-Jane

    Kerry-Jane Registered User

    Feb 9, 2004
    25
    Surrey
    Hi Mufan

    I too am in a similar position to you. My Mum (62) started showing signs similar to those you are now experiencing about 18 months ago. We tired to help her,thinking it was a form of depression following a small accident which meant she had to give up work early. We then took her to a consultant who said he thought it was depression and prescribed accordingly. However, we weren't convinced and it was only after a lot of pressure on our behalf that a year later we got a second opinion. Following numerous medical and psychological tests we believe that we are about to have AD confirmed.

    All I would advise is that you start researching for help and options now. Please don't leave it too long. I think we left it because we thought depression was a "treatable" problem, dementia was too scary to comtemplate. However, by talking to people here and speaking to outside agencies, we hope that we are slowly getting to a position where we can, at least, deal with the situation as it now seems to be progressing. However, I wish we had got things moving a lot earlier than we have. Speak to people, social services, consultants, your GP, get as much help as you can in place to help your family. Remember you will need help too, not just your Mum.
     
  7. Betty

    Betty Guest

    agression

    as a new comer to the world of alzheimers I am a bit alarmed but grateful to be able to be part of these chats. the bits that alarm me most are the speed of deterioration and the onset of agressice behaviour. I suspect everyone is different, however, at what stage ( if you work on an earlyish diagnonsis) does the agression start?

    I am keen to know the whole truth and nothing less because it seems from reading its better to be prepared.

    thanks
     
  8. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Betty
    Agression is not something that is universal with dementia. Looking at the people at my wife Jan's care home, [there are 24 residents there] only one or two occasionally show minor aggression - when they feel under pressure.

    Please don't worry unnecessarily - it may never happen for your Dad.

    Regards
     
  9. susie

    susie Registered User

    Nov 30, 2003
    82
    shropshire
    Hello Mufan
    I read your posting with great interest as it mirrors the slow onset of Dementia that my husband exhibited. He was in a high pressure sales job so we went through thre stress path ,then depression before his total lack of interest in initiating anything and his gradual personality change caused his assessment. A brain scan shows the amount of atrophy that can lead to a diagnosis of dementia and David has certainly become more alert and perky on Reminyl. He has had a plateau for a while but is showing sign of deterioation although he is still ealry stages. It can take a long while for you to adjust to the illness and just when you think you have come to terms with it, something happens to upset your equilibrium!
    The books are very good at saying avoid confrontation and work round obssession but easier said than done! Get all the help you can and join a supprt group if you have one as it helps to hear that other people are having the same problems/ bad thoughts as you. I have found it difficult to socialise on my own but it does help to recharge the batteries.
    Start to investigate alternative housing for your Mum but be prepared for problems if and when you move her as they become creatures of routine. She may settle down well if it is all handled carefully. I'm usually very quiet but I've found that getting help and benefits for dementia patients makes you very assertive as it if for the person you love.
    Good Luck.
     

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