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. jc141265

    jc141265 Registered User

    Sep 16, 2005
    #1 jc141265, Mar 10, 2006
    Last edited: Mar 10, 2006
    Here I am at 4am in the morning typing on my computer because I couldn't sleep.

    I thought I'd get online rather than sit in bed tossing and turning and disturbing my husband's sleep. I also thought (the thinking is part of the problem I suspect, its what keeps me awake!) that as a last resort I might pose a question to other TP readers and see if my problem with sleeping and constantly being ill (not with colds and flus but with aches and pains and things that appear to be in my head) might be just part and parcel of being a carer?? Is this all simply due to stress?

    For the past 6 yrs (coincidentally the same time Dad has had this disease) I seem to have had one thing after another, it started with glandular fever which is real enough, then I had pre-cancerous cells removed from my cervix, following these two things I had a period of general malaise where I was extremely tired all the time, suffered from insomnia (like I am again at the moment), my libido once strong never recovered, and just generally never felt well. The doctors went down the path of Chronic Fatigue syndrome, then headed towards a diagnosis of depression, but yet I still managed to work full time and study full time, and graduated with a double Bachelor's degree from University recently whilst dealing at the same time with my father's disease. Some might have said it was the strain of everything I was subjecting myself to as well as the shift work I was doing, but here I am now working normal hours, no studying and for the past month I have had chronic face pain, don't know if it is my teeth, my jaw, my ears, or simply maybe its all in my head.

    I am sick of living on paracetemol, if its not face pain its back ache or insomnia. In the past 6 yrs I also developed a large cluster of benign tumours (lipomas) in my lower back, I have unexplained bleeding in my girlie areas and currently I've gone slightly deaf in one ear and appear to have dead skin in it that's peeling (probably an allergic reaction to the ear drops I put in to get rid of the earache!). I AM SO SICK OF BEING SICK!!!!

    I know the doctors no doubt think its all in my head, and I think its all in my head to some extent because surely no one can be THIS unlucky when it comes to their general health....I might be insane, but I am not stupid! I realise also that it very well could be brought on by some kind of reaction to the stress from Dad, but how the hell do I stop making myself sick if this is the case? Its no good telling me to just rest and take it easy, because if anything that seems to make things worse, brings on the insomnia, causes my back to ache incessantly. Sometimes I just wish I would get some serious illness just so I had something real to worry about, instead of these constantly niggling trifles of illnesses, illnesses that doctors can do nothing about except roll their eyes at me, and note down something about hypochondria resulting from depression. IF it is all in my head then goddammit why can't somebody tell me how to get rid of it, and no, anti-depressants don't work and actually make me feel more stressed about everything.

    Do I obsess about every ache and pain because it takes my mind off Dad? Maybe. Do I worry that like him I will get diagnosed with some death sentence? At times yes. I don't know a whole heap of lumps in my lower back, clustered around my spine, kinda made me nervous. The unexplained bleeding did too, and the befuddled brain that came with the fatigue was a little concerning. If this is all in my head then its amazing how powerful my brain is, considering the amount of physical symptoms that it is able to produce! A lot of times I suspect it is all hormonally related, perhaps brought on by the glandular fever or worse yet, symptomatic of my father's own problems, hormones and the brain are very interrelated.

    I try to take a chill pill at times, and head out on a path of ignoring my aches pains and other weird symptoms, but this all to no avail as well, the symptoms just continue to get progressively worse and louder and louder if I do so until I am almost not able to function. At the same time they never get so bad that they cause doctors to need to do anything, i.e. the bleeding stopped, I managed to get over the worst of the fatigue, the lumps stopped growing, the face is constantly aching at the moment, but not enough to stop me from doing things except relaxing, the insomnia comes until I'm at a point that I think I will go crazy and then just when I think I can't cope anymore, it mysteriously goes away???

    Maybe thats what it is. As long as I am constantly faced with these personal problems, I don't have time to get truly upset by Dad. Some days I want to just cry and cry and cry about Dad but funnily enough when my face aches like there is no tomorrow and I have a husband, step-daughter and job that I have to remain functioning for, I just CAN'T take the time to just cry about Dad. Maybe if I were well this would be worse? Does that make sense to anyone at all? Or is the pain and lack of sleep sending me loopy?

    Another weird thing that could suggest it might be allergy related in some way, is that all these things seem to get worse around this time of the year, or is it the general reaction I have after going through the xmas holiday and then having to face the reality of needing to stay functional for another year, through this all?

    By the way, don't worry I try to take the least offensive pain killers out there and as little as possible as I am fully aware of the dangers of addicitions. Also, I hardly ever 'catch' anything, to colds and flus, bugs going around, I appear to be somewhat immune!??!

    Last but not least, I'm only 31!

    Would appreciate it if anyone has had similar experiences to post something so I don't feel like a complete nut. I appreciate people's concern about my health but don't bother too much about suggesting therapies because I've tried pretty much every insomnia cure, libido enhancer, I've been to homeopaths, taken vitamins (magnesium did appear to help quite a bit with regards to the insomnia by the way), I;ve had testosterone shots and an implant (which also appeared to get rid of the chronic fatigue and befuddled brain). I've been to a psychologist as well.

    All I really want is some quiet and relaxation with no worries for a while, thats all I want! Figured worse case scenario, just spitting it all out on here instead of it all whirling around in my head, might help a little.
  2. DickG

    DickG Registered User

    Feb 26, 2006
    Dear Nat

    I would offer sympathy but that is a useless commodity to those of us in the AD maelstrom, I would offer understanding except that I do not have that level of understanding of your situation.

    As I have explained in my first posting I was suddenly overtaken with depression which for what seemed like a long time ( it was very short) my symptoms were very physical, was that pain in my chest a heart attack?, had my minor longstanding stomach problem turned cancerous?, had I become addicted to paracetamol and codeine? and so on. I just wanted to curl up in a dark corner and shut myself off from the world.

    I was lucky when I went to see my doctor, I was fobbed off with a very young
    woman doctor who turned out to be just what I needed. She was understanding and upbeat and listened to all the rubbish I talked and at the end of the consultation she diagnose mild depression (mild!!) and prescribed a very low dose of SSRIs which I have been on succesfully for a year.

    The point I am trying to make is that my symptoms were mild, what would they have been like if I was really depressed. Remember they were intensly physical. Do not misunderstand me, I am not suggesting that you are depressed, only you and your doctor will know in the end.

    I hope that you will be lucky like me and find a solution to your problems, in the meantime you are in my thoughts.


  3. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Nat,
    Well Nat, you're sounding like a clapped out horse ready for the knackers yard! I think your last paragraph hit the nail on the head
    Sounds like your mind and body are both screaming at you to give them a break.

    What do you enjoy doing Nat? I've heard about your mum and dad, about your husband and stepdaughter, about your job and studying, but what do you enjoy. What do you want from this life for you? We cannot make your dad well, so that can't be your answer.
    No, can't compete with your list of ailments, but have been on "Happy pills" for 24 months after "losing it" for a while. Was unable to go shopping, walk into a room with people in, had trouble driving (one day couldn't figure how to take petrol cap off the car I had been driving for 2 years), blood pressure rocketed. I get tingling in my head, mix words up, patches of insomnia; sometimes seem to fluctuate between overdrive and complete lethargy. Have wondered if my muddled brain could be the start of something sinister, but prefer to think it is due to overwork and stress.

    Pleased you got up and "spat it out", there's nothing worse than lying next to a sleeping partner, wanting to be asleep yourself, knowing that you are tired and going to feel lousy the following day.I hope you've managed to go back to bed and get some sleep, thinking of you all snuggled up with hubby!

    You are doing a fantastic job managing to hold it all together Nat. Your dad would be so proud of you.
  4. connie

    connie Registered User

    Mar 7, 2004
    Well Nat, if you are "going crazy" then so, I guess, are most carers to a greater or lesser extent.

    You have to become a little selfish and take some "me" time. You have had an extremely fraught past 12 months, just to my knowledge, and something has to give.

    No answers, but thinking of you, and sending a special hug.

    Love Connie

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  5. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    West Sussex
    Hi Nat

    Amy's post echoes my own thoughts, you need to find a way to relax and do something just for you, be kind to yourself and listen to your body, it needs time out to recover from the mental and physical stress it has been through.

    I had a similar, but not as severe reaction a few years ago, after 12 years of coping with my husbands alcoholism, he stopped drinking, we were happy again, life was good, then depression hit me big time.

    I couldn't eat, sleep or function at all, anxiety and disorder ruled until my GP prescribed anti-depressants, a few weeks later and I was out the other side, back on track and have been OK since.

    Thinking of you,

  6. Margarita

    Margarita Registered User

    Feb 17, 2006
    Hi Nat

    When was the last time you went on a holiday?

    How would you feel about going on a retreat?

    I say its all stress, I have a headache that won’t go away & I know its stress
  7. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Nat
    well, I'm not going to go through your list showing the similarities, but certainly depression, stress, paracetamol, rhinitis, skin complaints, recurrence of back problems all feature.

    I've seen several doctors and their consensus - I am ill, but they can't help much because the illness is related to my concern for Jan's condition, and is unlikely to go away until my girl does.
    Me, too, but what I have found is that the only way to handle that is to
    make myself a dual boot hard disk drive.... partition myself so that sometimes I start up and am running the Jan system, the rest of the time I am running the Nina system.

    Somehow this works because I know that when I am running the Jan system, then Jan gets all my attention.

    When I am running the Nina system, Jan doesn't go away, but I can access all sorts of happy things I can't when running the Jan system.

    Perhaps this kind of insanity is what keeps me a tad sane? :confused:

    I guess it is a case of ... whatever works, use it. Whatever mindset you need to create, do it. However you need to fool yourself to keep as well as possible, do that.

    Remember the song "They're coming to take me away Ha-Ha"???? Oh how I relate to it.
  8. Margarita

    Margarita Registered User

    Feb 17, 2006

    They have taken me to :) I think I have gone cartoon land loony tonnes :eek:
  9. DickG

    DickG Registered User

    Feb 26, 2006
    I too am in "cartoon land" and you are all the best people to be with.
  10. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    #10 Norman, Mar 11, 2006
    Last edited: Mar 11, 2006
    Hi Nat & Bruce
    I too am a member of the stress club.Been a member now for about 14 years.
    Just recovering from a chest infection followed by a UTI,which ain't gone yet!!
    Pain in the shoulder,seeing an Osteopath for that,I have also a rash but that may be a re action to the anti biotics.
    I am on a very short fuse these days and get depressed at times.
    At least now I can get a little more time off now that I have my extra hours funded.
    Does this go under highlight for the day or do we have a lowlight of the week?
    Keep smiling and the buggers wonder what you are up too!
    Norman :D

    Bruce I rember that song,"how did you get here so soon,have you seen my toy ballon"?
  11. connie

    connie Registered User

    Mar 7, 2004
    Norm, with you all the way. Love Connie. ( Be in touch soon).

  12. jc141265

    jc141265 Registered User

    Sep 16, 2005
    Thanks everyone, your replies have made me feel better...as i've said to others before..every now and then I get to a point where I feel like a kettle on full boil and I just need to screech. Guess thats what I did in the post above...am much calmer again now, not even simmering!

    to carry on with that sentiment started above,..."where life is beautiful and those nice young men in their clean white coats...." or something like that.

    Norman, your words were gold...I wonder if that one sock up and one sock down thing discussed some time ago is like the secret hand shake of the 'stress club'??

    Well gotta go and do some relaxing...or at least try.

    Thanks again to everyone, and hope all went well for you and Lionel Connie (re: other post on young dementia sufferers),

    :D <-- Following Norman's advice.... :p
  13. Bets

    Bets Registered User

    Aug 11, 2005
    South-East London, UK
    Hi Everyone,

    I'm very fortunate in that I'm generally quite healthy, although I get occasional bouts of insomnia and, as Norm says, am often on a very short fuse. Can't believe how irritable the smallest thing can make me. However, what I notice most is that I am so clumsy. I am constantly dropping, spilling and bumping into things. I have come to the conclusion that it is because I am always preoccupied with the life-dominating dementia and can't concentrate properly. Does anyone else find this?

    Oh, and a certain, mostly low-level of depression has become a fact of life. Apart from all that, I'm absolutely fine!

  14. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    I don't think the stress club has any sock signs , more a twitch of the right eye
    Norman ;)
  15. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    strange that you should mention being clumsy.
    I have broken more plates and glasses of late than in the whole of my life.
    I think you are correct,Dementia takes over most of your waking thinking life. :eek:
  16. connie

    connie Registered User

    Mar 7, 2004
    Don't know about being clumsy, but my concentration has gone, along with a lot of my confidence.

    No answers really, just learning to live in Lionel's world.

  17. Lynne

    Lynne Registered User

    Jun 3, 2005
    Me too, I often wonder (only HALF-jokingly) who should be taking the memory & aptitude test, Mum or me!
  18. rummy

    rummy Registered User

    Jul 15, 2005
    Norm, I wondered why my eye started twitching and wouldn't stop !

    Nat, Stress will definitely make you sick. Obviously we all have expereinced it and have physical reprocussions from it. Mine effects my pour stomach and I was close to an ulcer when I got a handle on it.

    Try melatonine to help you sleep. It is natural. My husband uses it and it works wonders for him. Benedryl, knocks me out so when I can't sleep and helps the allergies too.

    But how to get rid of the stress? I think you have to realize that you have control over it because it is a state of mind. You can't control what is happening to your Dad but you can control how it effects you. Easier said than done, I know. I almost went on antidepressants last month. I was a mess. But I decided that when I feel myself going into that dark hole, I would just step back from it. You can choose to go in or not. Sometimes I think we like it in there or we wouldn't jump in so often! Climb out, realize that there are things you cannot control, let go of it. If you have faith, pray about it. The good ole serenity prayer is the best.

    There are times medical intervention is needed and I am not discounting that at all. But when it seems like there is no help there and you still stressed and sick, try changing what and how you are reacting to things. Ease up on yourself, put yourself first, because I know you don't.

    Try meditation, yoga or a walk somewhere beautiful. Look for the blessings of the day and dwell on positives instead of everything that is wrong.

    Honestly, with all you have had on your plate I would think is strange if you weren't having these problems. It is time to be good to yourself or you really will end up sick. Don't worry about getting AD, it is out of our control who gets it and who doesn't . Are we going to let precious days be consumed with a "what if" ?

    You are close to my daughters age and I would tell her these same things. Your Dad would not want you doing this to yourself. Perhaps the first step is to empower yourself to control your emotional and physical health. If you think your sick, you will be sick. If you think your stressed, you will be stressed, and if you think your hopeless, you will be hopeless.

    Love your Dad, be sad that he is sick, but don't let it destroy you.

    AND, when I am down in the dumps...... I give you permission to tell me to eat all of my words :eek:
    Love, Debbie
  19. Dave W

    Dave W Registered User

    Jul 3, 2005
    Probably a weird thing to say in response ...

    ... but this thread has actually been the highlight of my day. I know that after the last few months (quite apart from all this, I've been made redundant, started a new job (horrid, but I have no spare capacity to do anything about changing it right now), moved house and started living with my partner - all classic stress inducers. I am several kilometres beyond my wit's end and walking in the wrong direction!

    So I'm glad to read that at least I'm not the only one feeling like this. Next Monday, even if know I have to get up at 4am to drive to the airport, I will be flying to Italy for a week. I don't care if it rains all week - I'll be somewhere else for a few precious days. Quite possibly sleeping through all of them, but I don't care about that either: it's a nice hotel and the beds are comfy. If I dream while I'm sleeping, I'll dream we all have happy days that life the weight of stress from our shoulders.
  20. Lynne

    Lynne Registered User

    Jun 3, 2005
    Que sera sera

    Dave, I hope you have a wonderful week in Italy - you certainly deserve a break!

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