1. Kriss

    Kriss Registered User

    May 20, 2004
    Today Aunt was 76

    3 years ago today no-one knew there was very much wrong with her though with hindsight there were signs.

    2 years ago today having suffered a serious and rapid decline she was in a residential home but fit enough to be taken to a local hotel for a surprise Birthday party. Nearly 50 friends and relatives attended and although unsteady on her feet and finding it difficult to make herself understood she enjoyed her day.

    1 year ago today she was a week into residence at an emi home. She had settled well and the awful symptoms that had forced her move had dissappeared presumably due the the different care she was now given. We had a few friends and relatives attend a finger food party in the home and although initially she was having a "sleepy" day, when she woke she was all smiles and most certainly enjoyed the food and attention.

    Today we repeated the same small party but my Aunt struggled to eat, and to stay awake, and although we had some smiles they were invariably followed with tears. Of course those tears were then shared as we all struggled to keep a brave face.

    Of late she had seemed well "out of it" if you know what I mean. Babbling away 20 to the dozen, incoherrantly but positively, about goodness knows what. The awfulness of today was she seemed back with us and that meant she had an understanding of her predicament. She quite clearly said she was very tired several times. My mother is convinced that she also said she wanted to die though I have tried to ease Mums pain by suggesting that she may have been expecting to hear Aunt say such a thing and therefore may have heard something that wasnt.

    Opening cards and presents was beyond her and as I unwrapped and read greetings it was so hard to keep smiling and saying nice things while at the same time dabbing tears from her cheeks.

    After today I feel I couldn't put her through that again. Maybe Birthdays should now be like any other day. Same old routine. How I hate this bloody disease. Will it ever stop hurting so much. I seem to spend far too much time wondering who will be next. Every muddled word my Mum comes out with I seize upon and wonder about - come to think of it, every time I struggle with challenges at work that once were simply dealt with, I question myself.

    Off to dry my own tears now - anyone coming for a (virtual) hug?

  2. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Kriss,
    What can I say? These special days are so painful.
    <<<HUG>>> Hope that says it all.
    I know what you mean about wondering when you muddle up words, or a task seems more difficult. I was unwell a couple of years ago, and now when I am tired I can struggle to find words, or I just cannot think how to do something simple. I think because we have loved ones with dementia we are more conscious of these things.
    Not really helping here - just wanted you to know that you are not alone.
    Love Helen
  3. Margarita

    Margarita Registered User

    Feb 17, 2006
    Join you both in a virtual hug

    I know the feeling my mind has gone blank sometime when in a conversation, but have been told its stress then think oh my god they say from stress you can get dementia cannot win , any way better shut up or I shall put my foot in it .

    sounds lovely 2 years ago :)
  4. Helena

    Helena Registered User

    May 24, 2006
    Yesterday my Mother insisted on buying cakes for her Birthday Party she is having in 7 weeks time to celebrate what she claims is her 100th and will get something from London !!!

    She refuses point blank to accept she will only be 90 or that the cakes would be stale by then

    5 yrs ago we thought nothing was wrong but each year since has bought an event which was no doubt some kind of stroke

    She was still driving in March .........scary

    Now she is permananty fixated on locks and keys claiming no key fits her locks
    and people keep dumping piles of keys with her
    She has hit us
    Argues black was white was purple

    Then in the next breath is telling you all the names of plants which for 18 months she has not had a clue about

    I will never understand this awful disease
  5. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    For all sorts of reasons I hate the 'pressure' of 'special days' - birthdays, anniversaries.... time to start living life as if all the 'milestone' days were ordinary and treat each and every other day as 'special'????

    If you've 'dabbed' your aunt's tears, then surely that is a sign of her still being able to show emotion ('happy tears' my mum always says!) and recognition? (Even if she didn't recognise the 'occasion' quite as you did).

    An emotional day.... try not to worry (sorry, that's rich).... but I'm sure you know where I'm coming from....

    Hugs are here in abundance for you ... and a good line in virtual tissues, too....

    Much love, Karen, x
  6. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    Helena, if we understood it, could prevent it, cure it ... or simply know better how to deal with it there would be no need for TP!

    So your mother knows or thinks to have a have a celebration in 7 weeks' time???
    So what, if she's got things a bit wrong??? If she doesn't understand she's 90 and not 100??? Isn't being 90 enough reason to celebrate?

    I struggle with 'telling fibs' - but recognise there's no need to badger with 'hard truths' either.... could you not 'go with the flow' (i.e. your mum's) and make something out of of whatever celebration she has in her own mind for herself????

    I think of how heartbroken Kriss feels tonight..... for all the effort made one wonders what benefit? (Kriss, this is especially for you).....: One of the best reassurances I had was from an Age Concern worker who told me it didn't matter if mum couldn't remember where she'd been or what we'd done - she would have some recognition of having had 'a nice time'.......

    That's enough for me to keep making the effort.....

    Love, Karen, x
  7. daughter

    daughter Registered User

    Mar 16, 2005
    So sorry Kriss, these special days hit us hard. At my Mum and Dad's anniversary 'party' at Dad's home last year, Dad kept wandering off down the corridor and we just carried on regardless until one of us managed to get him back in the room for a few minutes again. I too find keeping up that brave face so very hard sometimes.

    Helena - My Mum struggled long and hard to stop arguing with my Dad when he would say that black is white. Yesterday she said to me that she would advise anyone who has just realised/found out that their loved one has dementia to not argue, to just try and agree with what is said rather than try to make them see that black is black.

    What is the problem with that anyhow? If we know that someone has dementia, then, by definition, that someone will confuse things sometimes (and that must be hard enough for them if they realise it anyhow) - and if we know that, why do we not just make the path smooth for them instead of riling them further?

    If you can look for a positive in all this, Helena, you might see that at least your Mother is still looking forward to something, to celebrating (who cares what it is?) - an event to prepare for, something to live for. She can remember names of plants at the moment - brilliant! My Dad used to be good at gardening, now he barely raises his head to mumble 'lovely' when I point out a pretty pink fucshia.

    He now mostly sits in a chair and has no zest for life. When he does something strange like starting to pour his tea over the table, I'm almost glad that at least he's making an effort to do something, even if it's the 'wrong' thing. I'm not saying my situation is worse than yours, I'm just saying that perhaps it's time to stop trying to understand this disease (who can?!:eek: ) and just grab whatever good parts are left of your Mum's life, even if they do not make sense to us.
    Karen, I agree, I'd make every day his birthday if it made my Dad happy. x
  8. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    West Sussex
    Hello Kriss

    I am sorry the birthday was upsetting, but you were there with your Aunt and she knew you were there with her, you didn't "put her through" anything.

    My Mum is a year younger than your Aunt and about the same stage I should think. I understand what you are going through. I try very hard to see the world through her eyes, too many people around her make her withdraw, so I suppose she is overwhelmed by the situation.

    We now visit one at a time and that seems easier for her. Birthdays, Mothers day and Christmas time are so very different for us now, Mum is seemingly unaware that the day is "special", so we take her cards and presents over the course of a few days, each of us spending time with her, she seems to have no idea what a card or present means now, so maybe we go through the ritual for us, rather than her.

    As for when it stops hurting, I don't think it does, it is a long, slow and painful time for all of us.

    I cope by trying very hard not to look too far back or forward, just trying to take life as it comes.

    Hope you are feeling better today.

  9. Helena

    Helena Registered User

    May 24, 2006
    Its all very well to say "dont argue " or just tell fibs/whitelies"

    but when the person involved is the one who thrashed you for telling fibs as a child ( as all kids do at one point or another ) its not possible now to do other than tell the truth

    and yes i do not suffer fools gladly

    My sister was always the patient one but even she is at screaming point with my mother over the keys and locks nonsense that is really getting very serious indeed

    Quite why its suggested you have to enter the dementia patients fantasy world is beyond me that simply relieves them of stress but creates it in you and its stress thats the killer
  10. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Helena,
    You sound to have had a very difficult time, and relationship with your mum in the past, but if you are to help her now, then you have to try and put that behind you.

    The problem is that a person suffering from dementia has no control over their 'fantasy world' - they cannot choose to be in it or not, they cannot be reasoned out of it, they cannot be argued out of it - sometimes they will involuntarily move in and out of it, so that at times they appear lucid.

    Helena have you spoken with your own GP about how you are feeling - I wonder if talking it through with somone may help you deal with the situation differently and be less angry.

    Love Helen
  11. Lila13

    Lila13 Registered User

    Feb 24, 2006
    I was lucky my mother had a happy last birthday, though we didn't do anything special, she knew it was her birthday, knew who sent her cards, phoned people to thank them, and took the cards to bed with her on the 5th and 6th, hugging the cards and snoring. I managed to get some happy photos of her that day too. She was even moderately polite to the next-door neighbour who came round, that was the last time she saw that neighbour. Of course I had no idea that it was going to be the last, only last in that house.

  12. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    Hi Helen,
    Yes, it's difficult when it's been drummed (& pounded in some cases) into us that we mustn't lie. To now lie to that person can be extremely hard, but that person isn't really that person any more.

    I'm a big advisor of lying myself. Yes, it will be hard but it is possible for you. If it makes your mother less stroppy if you agree with her, why not? Arguing with her certainly must be very, very stressful - my mother has gone through some "interesting" stages & I simply agreed or said nothing or changed the subject. That usually worked.

    You can learn control your own reaction to your mother's words & actions, although it does take time to be able to do without bursting a blood vessel in your head!!

    It's very hard but try not to react. I understand how she can push all your emotional buttons but with time, luck and effort you can stop that.

    Good luck!
  13. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Anyone who has ever been in therapy (yes, I know, I've been in the States too long!) will know that the constant mantra of the therapist is: the only person you can change is you. If that's true of those who don't have dementia, how much more true is it of those who do? Of course, if you're dealing with someone who is sane, there's a very good chance that if you change your behaviour, their behaviour will change in response. If it's someone who is suffering from dementia, all bets are off. However, even if your change doesn't elicit any change in the other person, YOU feel better.

  14. Helena

    Helena Registered User

    May 24, 2006
    Since my Mothers 23 hours out of 24 preoccupation for months has been with keys and locks .........insisting on using car keeys to open front door etc no amount of deflection or changing the subject helps

    She accuses us of stealing keys , giving her ours , taking bits off the doors ,adding bits on its a pantomine and nothing deflects her .

    My response now is to stay away hoping the crisis comes fast because she ought to be in a care home .

    My sister is the one who will keep going because her husband makes her feel guilty if she tries to stay away .

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