A littl ray of sunshine?

Discussion in 'ARCHIVE FORUM: Support discussions' started by widget, Jan 9, 2006.

  1. widget

    widget Registered User

    Jul 18, 2005
    HI everyone

    Two CPNs visited my Aunt and Uncle on Friday. My Aunt couldn't answer any of the questions asked of her, constantly trying to use my Uncle as her brain. The one CPN took her outside so she could 'see the garden' while the other chatted to my Uncle who broke down completely to her.

    Well, the little ray of sunshine is that they have arranged for her to go for a scan on the 19th so I am SO RELIEVED that the ball is finally rolling. After months of trying to convince my Uncle she needs help something's happening!!

    Unfortunately she is now stating that she is NOT going to the hosapital, NO WAY. So, my Uncle has told her that he is going for the same test, just to get her there. My Brother and Sister in Law will be taking them and being on hand for moral support but i can't help feeling guilty that i won't be there for her. I have a 6 and a 4 year old, run my own business and i live 100 miles away so it isn't easy.

    I think i feel so guilty because I used to be so close to her. I lived with her from age 8 to 23, and stayed with them for weekends when i was even younger! As a child i used to tell her that if she ever died I wanted to die too!

    When i phone her it's like i'm talking to a completely different person. Everything i ask her gets relayed to my Uncle who gets ratty that she should be talking to me, not him. I have accepted that it's the illness and its not her fault and i'm also really worried about my Uncle. He's a very fit and active man (at 69 he goes out mountain biking with my hubby!) who can never sit still and still works, albeit part time. He now has to contend with the housework and meals and my Aunt following him around and using him as her brain. He seems very depressed at the moment and i only ever hear of them eating cheese on toast, or a sandwich and my aunt i think survives mainly on a couple of biscuits and cakes and cornettos. Neither of them have been big eaters but i wonder if my aunt's diet could be making her condition worse, i don't think they eat any veg and she has always been a vegetarian. While they were here over Christmas i made a cooked dinner every single day to try and get them adequately nourished before going home again and they practically licked the plates!

    One thing i started noticing about 2 years ago is that most of the food in their cupboards was out of date. When i visited i would point out to my uncle that some of it was weeks, months and even years out of date. He would get a bit shirty about it (now i know he was covering up for my Aunt) and every time i visited he would point out that everything was 'in date'. I now worry that between my visits they could be prone to eating food well past its sell by date. I remember once going to make a sandwich, took the ham out of the fridge to find it had grown fur!! yuck!

    Am i being too anxious about these things? Do a lot of people of that generation not bother so much about how olf their food is? I know my uncle has harped on about 'when rationing was around you couldn't be choosy' in the past. Sorry if i offend anyone with that statement, i don't mean to. I am just going round and round in circles worrying about the pair of them and losing a lot of sleep over it.

    Sorry for rambling on so much, this forum is wonderful for getting things of your chest isn't it?!
  2. inmyname

    inmyname Guest

    #2 inmyname, Jan 9, 2006
    Last edited by a moderator: Jan 9, 2006
    You should see the dates on my 89 yr old mothers stuff ........some of it is probably pre war !!!

    As for the fridge YUK

    My Grandparents were much the same

    It seems age brings with it immunity from bugs
  3. daughter

    daughter Registered User

    Mar 16, 2005
    #3 daughter, Jan 9, 2006
    Last edited: Jan 9, 2006
    "This is not a popular view here" - I think that might be because most people care for their relatives/friends with AD. :mad:

    "particularily elderely ones" - isn't this a bit of an ageist attitude? When does someone begin to be 'elderly'? 90? 70? 50? :confused:
  4. widget

    widget Registered User

    Jul 18, 2005
    But how can we possibly know what is REALLY going on in their heads? You can't seriously think that we as human beings can 'let nature take its course' without trying to intervene?

    My Aunt is definitely not waiting to die, in her clear moments she sparkles.
  5. inmyname

    inmyname Guest

    #5 inmyname, Jan 9, 2006
    Last edited by a moderator: Jan 9, 2006
    I do indeed know a 92 yr old who though now entering AD has ever since she was 87 been constantly saying she did not wish to be around .........yet every time she is ill and begs the doctors not to treat her they do and she pulls through

    If the antibiotics etc used were not in existance then nature would have taken its course

    So whats correct ?

    I am also faced with a very experienced CPN saying do not intefere or contact GP etc ref my 89 yr old Mother

    I do care and do not like to do nothing but equally I can see the other side of things and why the CPN has given such advice
  6. Lulu

    Lulu Registered User

    Nov 28, 2004
    My Mum lets food spoil in her fridge. Even though it is right under her nose, she doesn't 'see' it. Whilst I take sell-by dates with a pinch of salt, especially with tinned and packaged goods, so long as the tins are not damaged etc, but fresh food in the fridge which is obviously rotting could cause food poisoning, and this would be dangerous, especially to an elderly person. My Mum was always so meticulous before .... why do they not see what is in front of them?
  7. daughter

    daughter Registered User

    Mar 16, 2005
    Unfortunately, self-neglect is one of the behavioural changes that can happen with dementia. I found this page useful from the Working_with_people_with_dementia section:


    Note that it states at the beginning: " An individual's pathway through dementia is unique and influenced by their previous life experience. Some of these changes may not appear in the order listed. Some may not appear at all."

    Hope this helps,
  8. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Lulu
    Well, you have just successfully stepped up a rung on the ladder of understanding about dementia.

    In time we all think [or say] "why don't they..." and then follow that with "recognise us?" "see the food is dodgy" "put 5 contact lenses in one eye" [my wife did that] "walk outside naked after dark?" "throw a knife at me?" [she did that too] etc etc

    The problem is that we are judging them by our standards. So the first lesson is to begin to try and put yourself in their position.

    ... eye brain coordination and memory failing, or the lighting is bad, or we are wearing something they have not seen before, or we have not seen them for a while [maybe a day...] - that's why they don't recognise us

    ... nose brain coordination and memory failing, coupled with losing an appreciation of what a fridge is for, where it is, what is in it [perhaps it isn't their food =to them] - that is why the food is bad and they can't see it

    ...short term memory is damaged, and there is fear and confusion and desperation, and they are determined to get the bl**dy lense in their eye - hence 5 lenses put in

    ...desperation and fear, no way to tell anyone because the people won't listen [perhaps because the words used have no meaning] - so they do something drastic to try and get help

    ... how to get through to someone who can't/won't understand that they are scared and they know they are losing it - throw whatever is in their hand at the time

    Theirs is a scary world. We must enter it to understand that.
  9. connie

    connie Registered User

    Mar 7, 2004
    Thanks once again Bruce, you give us a better insight into 'their' world.
  10. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi connie

    thanks! I used to tear myself apart trying to hold back from being unreasonable when Jan did things I couldn't understand. I think it helped in a peculiar sort of way when she was reduced to crawling in a padded room, and I had to join her in the crawling. That made me more receptive to seeing all things from a strange angle.

    If we can't get our minds around their view of the world then it makes life so peculiar for all parties. If we can't enter their world to communicate then we lose, and they lose.

    As most of us know, it does no good to judge them on their behaviours alone.

    Brucie story:
    at the weekend Nina and I drove to Swansea to visit her Dad who had a stroke last week. I couldn't see Jan either Saturday or Sunday.

    I visited her today and, as usual, it took me some 20 minutes to normalise us to talking at the same level. [bit like the chambers divers use to sort out the 'bends', or airlocks in spacecraft]

    Out of the blue, Jan said "Bruce", absolutely clearly. And smiled when I said "wow!"

    If I hadn't been visiting that time, or if I hadn't been on my back on the floor holding her, or if I hadn't been talking to her all the time and smoothing her hair, etc etc.... then it wouldn't have happened.

    Someone who had viewed her from afar, as she lay on her side on the floor, but who had not joined her world - would not have made contact.
  11. nikita

    nikita Registered User

    Jul 31, 2004
    how lovely for you bruce its moments like that that keep us visiting
  12. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    West Sussex

    What a lovely visit, you have cheered me up no end.

    I have learned to stop trying to make sense of AD and go with the flow since Mum has suddenly deteriorated, it makes life more bearable and visiting a lot more fun.

    I went to see Mum at the weekend, she has garbled speech now, as usual we were joined by a fellow lady resident who only makes a stuttering sound and a gentleman residents who hardly utters a sound.

    The four of us sat in a little group and I started chatting about our dog, Mum and the other two residents joined in the "conversation" with expressive hand gestures, smiles, frowns, nods and laughs. This jollity continued for a good 15 minutes.

    When a watching carer asked what we were all laughing about, I had to be honest and say I had no idea, but it was a lovely visit for all 4 of us.

  13. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Nikita - thanks!

    Kathleen -
    I do believe that in many cases they can still hear quite normally, it is just their own speech that is compromised. For some, it is speaking what appears to be just noises, a lot, or a little, for others, silence. But I don't think we should believe that their inability to speak means they cannot hear perfectly well. ... and in many cases interpret what they hear quite normally.

    Looks to me like you all found a new level of communication that is above speech!

    Well done.
  14. Worried Woman

    Worried Woman Registered User

    Jan 7, 2006
    I just love this forum, I only found it last weekend and have found it a great source of information, comfort and at times amusement.

    Going back to the out of date food thing, it was wonderful to find that it's not just my mum who hoards mouldy food and just chucks more in the fridge on top of it. I too wonder why she cannot see it's mouldy and cannot understand that it may poison her. When I pointed it out to her she just said, "ah well I may get poisoned one day, if you're lucky!"

    I was viewed with great suspicion when I cleared out two large bags of out of date stuff. Even the longlife milk ran out in Jan 05!

    I also cannot understand how she can think it's OK not to bathe or wash clothes. Surely she can see when her blouse is dirty? I'm having trouble getting my head around that. Maybe it's because, as I think Brucie said, I am looking at it from my perspective. But I don't know how else to see it.

    On another thread here someone wrote that we should "stop trying to understand how they perceive things and just deal with the dementia as best we can." I think that this is wrong and feel that trying to understand why they do and say things could help us deal with the problems in a better way. Any views on this?
  15. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    I'd fundamentally disagree with that. But maybe it is a view that can help them forget their loved one and ease their own pain, as is believing them to be 'in the land of the fairies' or 'la la land'.

    Okay, let's follow it logically.

    We're a nurse, and our patient keeps throwing up. So let's just deal with that. Clean up the mess and look no farther. That is the route this person has proposed.

    Or, what if we take another route - wonder why the patient is being sick. Realise the sickness is as a result of something else. Remove or treat that something else, and the patient is no longer [as] sick. Less mess, less work, less distress on all sides.

    Unless we try to understand things from their perspective we are not treating them as equal human beings, and they are still that, no matter how advanced their condition.

    No, it is not easy to imagine oneself in their place. But it is so well worth giving it a go, for you and for them.

    Perhaps I found it easier because I have really bad migraines from time to time. A doctor at University College Hospital told me once "you can't possibly have all those side effects of a migraine as you have described, no one has that many".

    But I've had very many, including the loss of coherent speech, and also of vision.

    The first time my speech went, I was in a pub, and people thought I was drunk - even though I had not had a single drink at that point. No matter how I tried, the words wouldn't come out, either in the right order, or in many cases, the right words. And I really tried. So I know how frustrating that can be.

    With loss of vision, I've walked into things. Because I refused to believe that I could do that. Perhaps this is akin to the dementia person who still believes they can drive safely!

    These days when I get a migraine, I have some £6 a capsule medication that kills a migraine in 20 minutes. [maybe I shouldn't say that lest NICE puts a banning order on it because of cost]

    With such migraines I at least know that in some hours time, I will be my normal self again.
  16. widget

    widget Registered User

    Jul 18, 2005
    You can't see it, you can't touch it....

    You can't see it, you can't touch it.... Thanks Bruce and everyone who has replied. Every time i visit this forum i think i'm accepting the cold hard reality that it's (in simple terms) my Aunt's brain 'rotting away' and there's nothing that can be done about it, really.

    I really appreciate hearing your experiences with your wife, Bruce, I suppose my Uncle will go through similar situations...

    I find my self increasingly worrying about the genetics side of things. My Nan T (mY Aunt's mum) died from a Brain Tumor and had Parkinson's, my Aunt has AD, another Aunt on that side of the family had a brain haemorrage, my Brother has Neurofibromatosis and is blind and i have been physically disabled since birth (one arm). Doctors tell me that there is no link between all of it but, hey, what do they know? Genetics as a science is still in its infancy. I have two children under 7 who are perfectly healthy but most of these conditions don't show up until later life and must admit i do worry about it. Especially the NF

    Wow, reading that list makes it look as if i've made it all up! I wish i had!

    But back to the AD/Dementia I think that as human beings we always try to see things from our own perspective and try in earnest to make sense of things we don't understand. Ihave come across this all my life when i get the inevitable 'What happened to your arm?'. I am always very happy to explain but for some people that's not enough, so sometimes i get a bit naughty and resort to 'Oh, a shark bit it off' or 'I bit my nails too much' or 'AAaaagh! It was there 5 minutes ago!' That seems to do the trick. But with Brain 'problems' you can't see it so you can't explain it away, and that's extremely scary.
  17. widget

    widget Registered User

    Jul 18, 2005
    #17 widget, Jan 10, 2006
    Last edited: Jan 11, 2006
    Oh i forgot to say - Bruce, I moved to Lincs after 7 years in Scotland where the drinking water is beautiful. When i moved here 2 1/2 years ago i started getting Migraines (where i couldn't string a sentence together) and a minor headache every day. I used to drink gallons of (filtered) water thinking that i was getting them through dehydration. I found out that this is an area with incredibly hard water and someone suggested i try bottled water. What, pay for water! Anyway i bit the bullet and started buying the bottled stuff (just the cheapy water!) 6 months down the line i've only had 2 migraines and next to no headaches. How about that for a miracle cure! :) Oh, and it turns out that i'm allergic to Nickel, which is present in the water..It might be worth a try for those of you who suffer from headaches/migraines...
  18. Mirium

    Mirium Registered User

    Oct 29, 2005
    Thanks Brucie

    Brucie, you are a real gift to TP!! I always look for your posts and find they help me so much. Your post on Monday about your visit to Jan made me cry. I can't imagine the joy you must have felt. You sound like a very devoted couple.

    I am following the suggestion you gave me a while ago, to keep a written record about mums activities, responses, etc., and I find this helps me, I would recommend this to others as it helps to see an overall picture of what is happening, thanks for that.

    Keep posting Brucie, you have a wealth of wisdom and experience which is helping many of us I'm sure. Thanks again and God bless.

    Mirium :)
  19. widget

    widget Registered User

    Jul 18, 2005
    Square one...

    :( Well, i had a call from my Brother last night who says that my Aunt is refusing point blank to go to the hospital for the scan. Looks like we're back to square one again....

    My Uncle is telling her that he has to have one as well, but she's digging her heels in, I really can't see what we're going to do to get her there.
  20. widget

    widget Registered User

    Jul 18, 2005
    Well tomorrow is the day of the scan. I'm feeling very anxious, and guilty that i'm not going to be there for support.

    My brother and sister in law are going to be with my aunt and uncle but my Bro is VERY nervous about my aunt throwing a wobbly in the hospital and refusing the scan.

    Trying not to think about it too much......

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