Pain tolerance in Alzheimer's

Discussion in 'ARCHIVE FORUM: Support discussions' started by CraigC, Nov 19, 2006.

  1. CraigC

    CraigC Registered User

    Mar 21, 2003
    Hi All,

    My dad has been suffering abdominal pains for a few months now. We've had dad in for all sorts of test including scans, blood test and even heart tests. He basically holds himself in the groin area (just above) and winces every few minutes or sometimes every few hours, it is a little sporadic. Obviously he cannot tell use what is wrong. The care home has been fantastic and is keeping and eye on dad. However, his GP and the specialist are at a complete loss as to what is wrong as he is clear on all tests. What more can we do without evasive test that may put dad through unnecessary pain and suffering.

    I was with dad yesterday and while walking he was in pain and even sitting down at home he would occasional get up and wince with pain. It is obviously upsetting as no one likes to see their loved one suffering.

    One theory is that it is to do with pain triggers not working correctly and dad not recognising pain - for example every time he feels a twinge when he needs the toilet it may be triggered as pain rather than just a sensation. W

    And here is the question. We have also been told that people with Alzheimer’s develop a very low tolerance of pain. Although this does not explain the 'pain' he is in, he does seem a bit oversensitive when he knocks himself or we shave/brush his hair etc.

    Has anyone ever heard of this pain intolerance for people in the later stages of Alzheimer’s?

    Has anyone else had issues with their loved ones seeming to be in pain but not being able to pinpoint the cause?

    Thanks so much
  2. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    Hi Craig

    My mum frequently complains of pain, we think it is in her stomach but it is hard to get any further info. I do worry that something serious could be going on but without her being able to describe her symptoms it is very difficult.

    I have also found the opposite to be true! Soon after my dad died 2 years ago, and while mum was in respite care, I got a phone call very early one morning to say she had fallen and been admitted to hospital as a precaution. I went to the hospital but wasn't too alarmed as she seemed in good spirits and had fallen quite a few times previously with no after effects. She definitely was not complaning of being in pain. It then came to light after x rays that she had broken her collar bone!

    Last year she fell and broke her hip and was most definitely in a great deal of pain, to the extent that she actually said 'I want to die', which was extremely distressing to witness. The 'care' home staff had actually moved her from the floor to a chair after the fall and the subsequent investigation by the CSCI ended with an admittance that this was incorrect protocol, as was not phoning an ambulance until we arrived.
  3. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    Craig, just my thoughts - although in very different circumstances….

    Mum is ‘obsessing’ at the moment about having a written record to ‘show people’ all that’s been wrong with her…… (pretty dreadful past medical history although at this given point there is NO definitive diagnosis of anything physically amiss).

    (One of my first threads here was ‘Aches and Pains’ - back in March - since when we’ve seen more doctors/consultants etc… she’s been scanned by more different scanners than I never knew existed ….and had more ’oscopies’ than I ever knew…. and no - no ‘pinpoint’ although ‘nodules’ have been found - which still don’t account for pain which - according to her - traverses from head/throat/stomach/derriere/feet /hip/ arms and so on back to head …. (although no-one ever seems to be there to witness any serious pain - just odd ‘twinges’ ….)

    I’m starting to think that mum seems to think that (other) people think she is ‘making a fuss over nothing’ and seems out to prove there is something physically wrong with her to explain her current health … I think she wants a PHYSIOLOGICAL rather than psychological reason for her problems…..

    My own mother has faced some pretty extreme surgery and recovered repeatedly with amazing speed and resilience …. even in her 60s ….. but yes, now, she presents a different concern in not ‘tolerating’ what a few years ago would have been ‘nothing’ to her….

    But then how, can we assume ‘it’s a nothing’????? What if it’s desperate pain she can’t communicate it properly……? What if there really is no (physical) pain yet still her attempt to cry for help in a way she can no longer articulate?

    Sorry, Craig, if that’s no help … just to say you have my empathy in worrying ‘how much pain?’ when there seems no definitive cause, and therefore no definitive way to handle it……

    I hope others here will provide better responses than I can - and will be watching for them. Thank you for raising the issue - and in the meantime, much love to you and your dad.

    Karen, (TF) x
  4. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    I do wonder whether there is any connection to RSD or CRPS (reflex sympatheic dystrophy, chronic regional pain syndrome). I know one other member has children with this, and my son had it and I know how frustrating it can be to a) get a diagnosis and b) get treatment. After all, this happens, at the most basic level when nerves start to fire and continue to fire - the normal gate mechanism fails to come into play. With AZ placing plaques and tangles in the brain, who know how much "mis-wiring" is going on. It's often treated with anti-epileptics (that's what put my son into remission), so the mechanisms are brain-based.

    No help at all, but just some musings.

  5. candymostdandy@

    candymostdandy@ Registered User

    May 12, 2006
    west sussex
    aches and pains

    Two weeks ago took mum to see GP as complaining more than usual about aches and pains, which appear to migrate from shoulder to wrist to knees, so basically never in the same place.

    The GP having carried out blood test confirmed that it showed that mum was justified in complaining about her aches and pains..

    GP was about to write prescription for mum for her aches and pains, but mum's concern on this particularly morning was her sore lip (I struggle to get her to drink enough water), and when GP asked her about her pains she insisted that there was nothing wrong with her except for her sore lip

    so we came away with a prescription for lip cream..
  6. connie

    connie Registered User

    Mar 7, 2004
    Hi, Lionels last fall seemed to indicate that maybe he had broken something in the 'hip' area..........Even the paramedics were worried.............He obviously was in very great pain.........It transpired that he had severly bruised a lower rib.

    I have always said to dear Lionel "You are the world's worst wimp" Who am I to judge how much pain he is in This is such a grey area.

    Hope yoy get things sorted out soon, love
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    When my husband fell, last year, the doctor in A&E apologised when his Xray showed he had a broken humerus. He had been examined by the triage nurse and the doctor; both had moved his arm and he hadn`t even flinched.
  8. icare2

    icare2 Registered User

    Jun 18, 2006
    pain intolerence

    Hello,yes my wife gets very upset at the least touch of anything and everything and even screams out loud for a simple thing like being a child again and a cry for help oh!! wish i could help her. as i have already said its just like a child again learning new ways to communicate..but !! she can understand everything thats being said around her,and becomes very upset if anything is being said about her..

    I am really at a lost trying to figure this out,as she can be as bright as a spark one moment then like child again the next..
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello icare2

    It just shows how no two sufferers are the same. One winces in pain at the lightest touch, whilst another doesn`t register even the pain of, in my experience, Shingles or a broken arm.

    On the other hand, the changing moods seems very common in all. From sharp to dull, from happy to sad, from peaceful to angry, we have to be prepared for everything and be able to interpret these moods and treat them appropriately.

    Not surprising is it, the stress carers are under.

    I wish you well. Sylvia x
  10. Lila13

    Lila13 Registered User

    Feb 24, 2006
    I thought that if a bit of baby lotion or similar was enough to "make it better" the pain can't have been as serious as she thought it was.
  11. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    #11 DeborahBlythe, Feb 3, 2007
    Last edited: Feb 3, 2007
    When my mum was schoolgirl she had a tribe of friends who called themselves The Spartans, because they prided themselves on being able to endure pain and discomfort.
    (Pause, here, while I reflect on what to say next without sounding treacherous).

    She now has numerous aches and pains and I try to take them all seriously. Tummy pains usually follow eating so she has beeen prescribed Gaviscon for indigestion and it seems to work. Headaches in profusion which the GP used to say were possibly due to the heat in the home making her dehydrated. Keep her well hydrated and offer Paracetamol. She has pain around her sacral area because of her lying in bed a lot and the pressure that this causes, and because she has so little flesh on her frame to cushion her now.She has an aching back, she has pains sometimes in her arms.

    Each of these ailments can be addressed with reasonable nursing care and even homely remedies I think, but sometimes they ( the aches and pains) all gang up and afflict her in a legion. She has a low dose morphine patch now to lift her through this generalised discomfort, and can be given Oromorph too if nothing seems to be working. I'm reluctant to ask for the Oromorph too often because when she takes it, she gets very sleepy and eats even less. I am constantly trying to work out whether it is better to try to get them to sort out each individual gripe by increased turning, closer attention to the pressure areas, more Gaviscon, or paracetamol for the headaches , or just to ask them to administer the Oromorph so that she can have some instant relief.

    Last week I discovered that the pressure mattress she sleeps on was 'beeping', indicating a fault. The maintenance person came and looked at it and said that it was inflated to support a person weighing 101 kg. How much does my mum weigh? 43 kg at the last count. So she is sleeping on the equivalent of a very over-inflated hard lilo. No wonder she complains of pains in bed, poor love. He reduced the pressure by half and we will see whether that makes her more comfy.
    Hugs often help to ease the pain too, but last week she told me to stop stroking her hand because it was hurting her, so the key has to be gentleness.

    A few years ago we went on holiday together in Sussex and whilst we were eating our Easter Sunday evening meal a lightbulb above us flew out of its fitting and dropped straight out and bounced onto my mum's head, shattering into glass smithereens and rebounding into everyone's supper dishes. I was furious that my mother had been hit and was on the warpath about it. My mother however, in the early stages of forgetfulness, found the attention quite amusing and claimed that the bouncing lightbulb had actually made her feel a bit brighter. It certainly got her a lot of admiration. I think she was seen as a bit sainted to have survived the dastardly lightbulb and still come up smiling. People came up to shake her hand and commiserate; which she would brush off with stylish insouciance. Old Spartan habits die hard.

    I have another story to tell about the day she broke her wrist. You'll have to wait for that one for another day.
  12. Kriss

    Kriss Registered User

    May 20, 2004
    This must be so difficult to cope with. I recall when first bringing my new born son home (nearly 21 years ago!) and feeling so totally and utterly helpless having done everything we could - fed, watered, dressed, cleansed etc - and still being faced with a distressed and crying baby, and having absolutely no idea what might be wrong.

    My Aunt was totally the opposite when it came to pain. When her teeth were checked it was found she had a mouthful of abcesses but had made no indication of even discomfort. All her teeth had to be removed!

    When I reached the hospital following her fall before Christmas she seemed quite comfortable initially even though it was then diagnosed she had broken her hip.

    The theory of the brains re-wiring sounds like a good one to me but sadly isn't going to help much as if it feels like pain, it is pain and what the hell can anyone do to help. More horrors.
  13. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    "Pull the other one"

    OK, so you've twisted my arm. I feel compelled to lighten this thread up with the comical tale of my mum's broken wrist. Every word of this is true.

    It was about six years ago when my mum still lived in her own home. I used to take her out on Sundays for a walk and this late hot July day we were walking on the North Downs near where we used to live when I was a child. My mother used to be a strong walker and used to go off on walking holidays with her friends, but now she was only really able to walk perhaps half a mile over the Downs and back before getting too tired.

    Before we turned around to come back, we sat on a bench admiring the view and we finally stood up to give way to some other walkers. My mum was wearing a pair of trainers, which I had thought were fine for this kind of walk, but I later saw that they had very smooth soles , almost glassy, from all the use she had put them to. The ground around the seat was parched and mildy gritty. We had taken only a few steps when my mother's feet slipped out from under her, she crashed backwards trying to save herself by falling on her left arm. She broke her wrist in the process.

    ( Stay with me, this story does have some laughs in it, I promise you.)

    She was in agony and couldn't get up. I dialled 999 using my mobile and then there was a bit of a pantomime because the ambulance service needed to know which road we were closest to, and of course we were in the middle of the Downs and I couldn't remember the nearest road. A kindly passer-by offered to go to the closest road and flag them down and somehow they finally found us and took my mum off to the nearest A and E.

    I ran back to my car and followed on afterwards, catching up with her seated in a very hot sweaty Casualty, filled with poorly people going nowhere fast. Two hours passed. Her arm was X-rayed but then nothing further happened. A member of staff came and apologised to us for the delay and said they were short-staffed that evening. They didn't have enough people to treat my mother.. which I didn't really understand but I found that they were short of an anaesthetist.

    Another half hour passed. Then someone came out and asked if I would be willing to help in the theatre. Honest! I am not qualified to work in a hospital but when it is your mum and she's in pain and they ask you to help, well what else can you do? They wanted me to hold the gas container and apply the gas mask over her face whilst they manipulated her arm into 'true'. Like a fool, I agreed.

    It was a like a scene from Dante's Inferno. My mum was squirming in agony and calling out hideously. Two, later three theatre staff were pulling on her arm whilst restraining her at the shoulder ( presumably to stop the arm dislocating) , and my mum was wailing " Stop them Debs, stop them , they are killing me" For my part I was beginning to sweat and feel sick. Some of the gas was drifting in my direction, I think and I finally had to sit down at the end of the theatre with my head between my knees. Must be great to have a resilient lump like me for a daughter. Faints at the first whiff of anaesthetic.

    Anyway, with or without my help, somehow the procedure was eventually completed and a plaster applied to the arm to keep it set. My mother who had been roaring like banshee suddenly stopped howling and looked up at the doctor.
    " I hope" she said, in her sternest, most well-composed school teacher's tones. " I hope you are going to pull on the other arm too to make it the same length..."
    Always a Spartan at heart, you see.
  14. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Deborah, thank you for that story -- serious, worrying, terrifying ---and finally very very funny. Your mum sounds like a wonderful woman.

    Seriously though, I've never heard of a relative being asked to help out in theatre. I'm not surprised you fainted.

    Love to you and your mum,
  15. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    Thanks Helen. Sometimes when I try to be funny I end up saying the wrong thing, but everything in this story is true. I wasn't trying! Saw my mum today and gave her your love. I found her looking sad and distressed, and in some discomfort with her neck and back. I juggled the cushions about a bit and we ate a roast dinner together. It was bit messy, but after she had finished, she perked up visibly and started laughing at what was going on around her. Amazing what a difference food will make. Another thought on the thread of pain relief...
  16. cynron

    cynron Registered User

    Sep 26, 2005
    east sussex
    #16 cynron, Feb 4, 2007
    Last edited: Feb 4, 2007
    help in the theatre

    I was also asked to help in theatre. My husband was to have a suspect leasion removed from his temple. Realising there could be trouble ahead.:rolleyes: The anethestist asked me to assist while he put the canular in place. So i was gowned up and tried to calm my husband while this took place he cried out and said this man has stabbed me in the hand TWICE i thimk the first attempt was not sucsessful. Afterwards i was also invited to be present in the recovery room, I told my husband to thank the nurse who was looking after him and he then thanked her in perfect GERMAN "DUNKER SHERN." HE SAID:)

    Love Cynron x x
  17. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    Cynron, that is all very strange! In your case it sort of sounds as if the invitation was pre-planned which is almost wierder than my mum's case! I think in our case they just didn't have enough staff around to proceed and they mistook me for someone cool-headed and competent!

    Either way I think that the hospital risk-assessors would have something to say about it!
  18. cynron

    cynron Registered User

    Sep 26, 2005
    east sussex
    helping in theatre

    Deborah the operation was booked and instead of the waiting room my husband was put in a bed on a ward until it was his turn. I had already said he would need sedating because of his dementia as he was only having a local anethsetic. I think i was invited to calm him, as has been said before in other postings hospitals do not understand dementia and how to deal with it.:eek:

    Cynron x x
  19. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    Cynron, Oh I see! but I still remain surprised! Nice to think that they had listened to you and were on the ball about the sedation.

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