1. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Anyone caring for someone who proclaims a multitude of ‘aches and pains’?

    I feel guilt (again!) that I am starting either not to believe mum (or be able to differentiate between her own fact and fiction) or to worry that I am not securing her the best care. She is currently under the care of five different consultants at the local hospital (that doesn’t count the pyscho-geriatrician we get to meet late April).

    She does have a mega-history of tumours – malignant and benign – (mostly lower abdominal) - all of which have been successfully operated on over the years. She’s a ‘battler’ – even her GP told me in the gentlest way possible I shouldn’t even have her here now…..

    She ‘presented’ a few months ago with symptoms which would alarm anyone (I’m no medical expert but I know coughing up blood and losing a lot of weight aren’t generally good signs). GP referred her to yet another consultant, whom we have visited again this afternoon and remains ‘bewildered’ at how the pains she is experiencing “seem to move around her body”.

    Over the last couple of months, we have been averaging three hospital appointments per week – bronchoscopy, cystoscopy, CT scan, isotope scan, X-rays, vascular specialist, follow-ups etc etc etc, not to mention she is bruised all over her upper limbs keep trying to take blood for testing.

    Trouble is, they can find nothing (my philosophy if they find something they may be able to treat it, as they have before?).

    Nothing, but nothing so far indicates any cancer or other ‘serious’ concerns, (their words) (only results we are waiting on are the psycho-geriatrician assessment and the MR brain scan which was actually undertaken for her hearing difficulties) yet she complains of pain. Today, at the chest clinic she complained of pain in her back. She couldn’t remember where the pain had been in her chest which resulted in the referral to the Chest Consultant. She forgot about the pains in her neck which had been her major concern last time when she was ‘very cross’ with the consultant because she didn’t feel he had taken her seriously…... She looked to me during the consultation to remind her where the pains were/had been. (Oh, and today she thought the consultant was wonderful because ‘we’ had made a mistake (not!) going to the wrong clinic and he still managed to rush her for an X-ray – help!!!!!)

    Is it possible she is either ‘imagining’ these pains, or recalling previous trauma? I don’t want to doubt her but am starting to feel she is running the ‘physical’ physicians a ‘merry dance’ and we are going to get to a ‘cry wolf’ stage so that when she genuinely needs help, we can’t secure it?

    When mum told him she was having to sleep ‘downstairs’ I resisted the interjection about her living in a bungalow (thanks, guys, I am learning thanks to what I keep dipping into on this site!)

    Mum had lost the ‘clinic’ letter for today ( I tried keeping her ‘filing’ at my house but she got really ‘stroppy’ about it so I went back on that . She seems to have a fascination with sorting and resorting medical letters/records (which I have only recently discovered she has kept for the last 30+ years!!!!) – is this part of the ‘pain memory’?

    Anyway, up-shot is, I felt today’s consultant has given up on her. She mentioned the pain in her back – I had to mention her fall out of bed (no witness) last week. Then she couldn’t remember falling out of bed (it took her three days to tell me it happened and hadn’t complained of any pain in the meantime) and told the consultant ‘it just came on all of a sudden’. Now I don’t know what to believe myself and/or report to the consultants who seem to be searching everywhere for a physiological cause for her malaise.

    She is feisty and independent (at times) even though she is clearly very frail and sick - yet I am already starting to feel she needs 24/7 which I simply cannot give….

    Upside – she told me she loved me today ‘even though I am a pain in the bum’. That’s mum in one of her better moments! (‘Bum’ is a very, very naughty word!!!) Love her and want to make sure I do the best for her. Any help/advice PLlleeeeaaassse!

    (Sorry this is so long-winded – it has been a long-winded day!)

    Thanks, Tender Face
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Tender Face
    this is difficult, isn't it? Because how can we really know.

    I have the opposite problem as my Jan can't communicate what is wrong and where. She also seems not to feel things that I would expect to hurt. But she makes faces and alarming noises at times.

    What I guess is happening in both cases is that the brain is having problems with the neural connections to portions of the body. In Jan's case, the pain centres may not activate, or she may not actually understand that she is in pain.

    In your Mum's case, there may be false signals telling her brain that things are wrong. A little like an electric cable with lots of connections, where the connections are a bit loose, perhaps. I've had cars that, when the air is damp, the electronic diagnostics of the engine think weird things are wrong. Once when the car told me a catastrophic engine failure was about to occur, it turned out to be damp in the CD auto-changer and thus, nothing of the sort!

    However if there was blood, that is different.

    I have bad migraines sometimes. One bizarre symptom is a section of numbness that moves around the body. I can feel it start at a finger and climb my arm, sometimes ending up at the tip of my nose.

    Perhaps your Mum has something a bit like that, only with pain instead of numbness. The brain can do funny things.

    All you can do is take it slowly. Treat what she says as true, because it is to her. In these conditions it is very difficult for the doctors to do anything sensible, but that doesn't mean they should not try! That's what they are paid for, after all. Keep chasing it and good luck!
     
  3. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    No specific advice Tender face, just to say Lionel presents a different 'set of symptons' according to whom he is speaking.

    Just Saturday, upon seeing his daughter for the first time in 5 months, greeted her with "I am putting my affairs in order as I now have these terrible pains in my chest. It won't be long now"
    A few weeks ago, as he came out of the care home it was "I now have another condition, I have these terrible stabbing pains in my head all the time"

    Unless he speaks of these conditions more than twice (without any prompting) I ignore them. I put it on par with "I haven't been to the toilet for two days " except I have just had the physical evidence to prove otherwise.

    I may be wrong, but I would run myself ragged if I listened to Lionel's every ache and pain. Don't despair, Connie
     
  4. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Thanks, Brucie and Connie. That helps already.

    I must say, though car analogies are lost on me. I do ignition key and where to put the petrol in (I am quite good at 'helpless female' when I'm in the wrong lane!)
    (Trying to keep smiling (grin!))

    I've got two more (new) consultants to see Thursday - I feel like slipping a note across the consulting desk - 'Treat with caution - can't believe everything she says' - then I think how wicked I could even think that.

    And more importantly, as you point out, Brucie, I worry there is something REALLY serious, some symptom I haven't been there to witness and she hasn't recalled or been able to articulate that the docs REALLY need to know....

    Absolutely right. She is seeing highly qualified medics. I can only do my best to try to make appropriate observations and interjections. I must concentrate on the TLC bit, trouble is I just feel 'love is not enough'.

    We hugged and cried (her in a wheelchair) when she came out of X-ray today after feeling she had been 'mauled and rawled'. I KNOW there is pain. Why can't any of these highly qualified people do any more than prescribe painkillers? I can do that much.

    Soz, bad day. Angry, frustrated, hurt, worried etc etc.

    Thanks again.
     
  5. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    My mother has been a hypochondriac for most of her life, so it is very difficult to guess which of her many symptoms to take seriously. She loves having heart tests, but won't believe all the many doctors who tell her there is nothing wrong with her heart. She's ALWAYS "had a weak heart" (ever since early childhood). And "I can't breathe ... I can't breathe" (clutching chest). And in hospital waiting-rooms she's eagerly listening to other patients' complaints, storing them up for future use.

    Doctors and nurses etc. have to find out the hard way that you can't believe everything she says. If I were to tell them, they'd believe her rather than me anyway.

    Lila
     
  6. Michael E

    Michael E Registered User

    Apr 14, 2005
    619
    Male
    Ronda Spain
    my wife has phantom pain and constipation as well. I think the problem is partly there is so little going on in life that the slightest twinge becomes a major pain - She has pain in the crutch, back, stomach - all move about and never last more than her memory span - which is to say the least limited!! Complaints of constipation are daily and her going to the loo is daily too so.... In my opinion the time to worry is if the 'reported' pain is in the same place for a long period......

    Bloody hell as we 'mature' we all get aches and pains now and then or even daily but mainly they are not life threatening - merely painful!d

    love

    Michael
     
  7. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    Unfortunately my mother persuaded doctors to prescribe medication for probably imaginary complaints, which I am sure made her condition worse.

    I was so relieved when I was there just after she came out of hospital and could tell the doctor I thought she was overdosing, and he stopped the lot. I don't know what she'd be on by now if I hadn't happened to be there, as she was always very secretive about her medicine, and didn't even want to let us stay in the same room when she was taking it.
     
  8. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    My mother use to complain of chest pains,had a scan done & doctor said that he heart is strong as an ox , still she complains, next pain was in her back so they done a urine test in case of infections all ok then it was a pain in the leg ,so then someone came out to see her done some physiotherapy ,told her that as she not walking a lot her muscles can waste away, now she has a cream to rub on it does more walking .

    Over the years , I find mum pains seem to get worse when she is worried about something ,rather then talk about it ,she say oh I have a pain
     
  9. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    and each new pain ensures someone comes to see her, or she gets taken to see someone ...
     
  10. Daryl

    Daryl Registered User

    Feb 13, 2006
    4
    Up North
    My Mam went through a phase of saying she had pains in her legs which we couldn't find a cause for. My Dad got around that one by giving her body lotion to rub onto the pains. It seemed to do the trick - psychological as much as anything I think.

    She also had a phase of neck pain but both her GP and a doctor in the local A & E could find nothing wrong but if distracted the pain would go away or would last as long as her memory span.

    A theory I had was it could've been case of Mam wanting to have something to say. Her conversational skills are very limited now, and doesn't get past "hello's" and "how are you", so saying that she has a pain somewhere may be an easy talking point for her.

    Take care All

    Daryl
     
  11. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Yes thinking about it, its like a child seeking attention, (of cause ruling out any real illness) I find with mum when she sees me busy with teenagers, or hugging them talking to them she say why does this hurt me margarita, old age mum :) as I give her a hug
     
  12. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Margarita, I think you've coined the phrase I was too scared to say - 'attention-seeking'.

    Mum was certainly in good spirits after all the fuss at hospital yesterday (the pain was soon forgotten).

    I guess I am worried I am in danger of 'taking my eye off the ball' - she does have an atrocious medical history - but perhaps she also knows she can play on that?

    Ugh! I hate myself for even thinking that!

    Thanks all. Much to mull over.
     
  13. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #13 Margarita, Mar 21, 2006
    Last edited: Mar 21, 2006
    My mother has diabetes, it is a worry, understand what you mean when you say 'taking my eye off the ball”

    Oh yes they know how to play us as in emotional blackmail when you say but perhaps she also knows she can play on that?

    How I see it is That table have trun now ,we are the parent now , my mum is the child now its all done in a labour of love , it was really hard on mum part to except this & maybe she never will ,excepting not only has she no control of me ,but no control of her self is unimaginable on my part ,all I can offer her is my understanding & unconditional love ……..I was told by a nurse that what a person personality was like before AD is high lighted 100 times more with AD

    Does your mum live with you? & does she or would she go to day centre
     
  14. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    Is your mum on insulin? How does she manage with injections and/or blood tests? Is she able to do any of this for herself?
     
  15. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    203
    Wiltshire
    They used to call dementia 'second childhood' and as he gets worse my husband shows childlike fuss over all things to do with his health. The cat scratched him the other day, and he wanted a sticking plaster for what was a tiny feline incision. He is always complaining about grits in his eyes, twinges in his wrist, and other maladies. Have to agree with the attention-seeking theory.
     
  16. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    I always think that phrase has an element of needlessness about it. That is, attention seeking for the sake of attention seeking.

    I know it is hard to take on board the helplessness that a grown person may feel when their brain is deteriorating. In a way, for us to attribute some responsibility to the patient may make us believe their faculties are not as compromised as they probably are.

    My preference is to give the benefit of the doubt to them.
    Imagine this: the cat scratches him.

    A normal adult would look at the cut, evaluate how deep it is, the amount of blood there may be and would think "I've known much greater pain than this and worse cuts as well; I'll just wash it and keep it clean"

    For someone with a particular stage of dementia there is only the fact that something has hurt them - and they already feel vulnerable anyway. Then it may be as if this is the first such scratch they have had. They may be very scared because they have no idea what to do. They seek the opinion of someone they think will know and who can make it better.

    It happens even to 'normal adults'.

    When I first moved to the house I am in process of selling, I had never lived in an area where bracken grows - in the garden if it can. I grabbed a stem and pulled - no gloves on. The bracken flattens and becomes as sharp as a razor blade. I had a cut. But I'd had cuts before, so no worry... except this time the cut is so deep there are frilly white bits showing, and there is a lot of blood.

    So I worried.

    I swathed it in bandages and had an emergency appointment at the surgery where I had 5 stitches, a tetanus injection and was told to be careful of bracken in future.

    So what's the call? was I attention seeking?

    Maybe I give them too much slack, but I'd prefer to do that than misunderstand their confusion and fear.

    I should add that my experience is only at close quarters with Jan, and there was never any doubt with her that she had a serious problem - contact lens broken in her eye, 5 contact lenses in one eye, bitten through lip when falling from bed, etc.

    Your people could be in a quite different situation.

    Finally, I am no longer in a 24/7 caring role at home, with all the stresses that brings. You folks are at the coalface.
     
  17. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    No mum is not on injection ,before mum was diagnosed with AD ,mum use to get all her diabetic medication mix up & eat all the wrong food ,her medication was all over the place & she was complaining that the doctor would not give her any more medication ,so I went a long with her to see the nurse ,the nurse told mum in front of me that if she does not eat the right food & get her medication sorted out she would have to go on injection, well that was the wrong thing to tell mum ,mum shouts at the nurse to stick the injection up her (where the sun does not shine ) .

    My mum mother died when she got gangrene on her foot 2 mum unite foot cut of all because of not taking care of themselves, & talking to my mother about her mother sounds like she had AD, & just over Christmas I saw my mum sister suffer a stork 2nd stork killed her she was on injection for diabetic, ate what she liked & done her kidneys in.

    I do mum blood sugar levels, & sort all her medication out. the doctor told me before we new mum had AD.

    People with diabetic have high lows & that if she does not take her medication the blood does not flow around her body to her brain lack of oxygen, & in the back of my mind I always wonder if only mum was more educated on diabetic , did not have that fear about it she would of taken her medication & not got AD Have got over that thought now .

    Mum well not eat anything with sugar now not even diabetic sweet

    There a couple in the home my mum is staying at the moment & the Husband brings in sweets for his wife who has diabetic injections, mum tells the husband of lol but the husband attitude ,is well she has not got a lot to enjoy so she may enjoy a sweet ,her legs are swollen up the nurses keep telling him not to bring them in . I feel like telling him yes that ok saying that, but if you have seen someone die from diabetic its not an easy death
     
  18. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Bruce I thought that a brain of a person retune back to childhood as in stages in another string you compared stages to a child ages.

    You can not compare yourself & your finger to attention seeking as you do not have AD

    When you say

    For someone with a particular stage of dementia there is only the fact that something has hurt them - and they already feel vulnerable anyway. Then it may be as if this is the first such scratch they have had. They may be very scared because they have no idea what to do. They seek the opinion of someone they think will know and who can make it better. ,,,, yes thats right is that not what a child would do ?

    If you have 3 children wanting your attention, would not one of them not cry louder ?say something to get your attention or be more naughty
     
  19. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    There is a particular research that likens the development of Alzheimer's to a gradual reversing of the development of a child.

    In my view this has some validity, and it is also a convenient way of trying to understand what on earth is going on with our loved one.

    However, it is only a particular way of trying to understand that - it is not what is truly happening.

    Neither would the person who has AD and who has been scratched by a cat. The AD may not be relevant here, it is the perception of the person themselves, regardless of their condition. The AD may be affecting the way they see reality, but for them at least, it is reality.

    Don't forget that we are looking at them, trying to understand. We have to try and put their behaviour in terms that we can understand. To them their behaviour may seem totally normal and it is we who are weird to them.
    in any situation for any person, when something new happens, particularly an accident, isn't that what we would all do?

    Go to an Accident and Emergency unit. If there are three adults there, one with a slight cut to their hand, another with a torn ligament in their leg, the third with a bad stomach pains, wouldn't the one who felt their injury to be the worst try to be seen first?

    I really don't like taking the similarity to children very far at all. I know we do it to try and understand them, and in a way it enables us to disregard them a bit because they are 'attention seeking'.

    Our loved ones with dementia are not children. Their behaviour may make them appear so sometimes, but that is because parts of their brain are damaged. But other parts are quite adult. Adult behaviour can be very childlike in general - take adults watching a ball being kicked around. That's childlike isn't it?
     
  20. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    I agree. It is demeaning for an adult to be treated as a child. Also treating someone as a child may encourage them to remain so.

    Lila

     

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