Lets Talk About Telephones!

Discussion in 'ARCHIVE FORUM: Support discussions' started by Ditto, Jun 1, 2008.

  1. Ditto

    Ditto Registered User

    May 17, 2008
    45
    Cape Town
    Since my patient's Doc asked me to remove all the telephones from the house, (something that I essentially felt was really cruel) there has been some change in her general agitation..The Doc says that telephones can sometimes make Alzheimer patients more aggressive as they see a telephone as an outlet to vent or seek attention. This was certainly true of my patient to the extent that she became a literal nuiscance to everyone she called.(Mostly the Doctor) Its very very sad! Anyway, since I took the phones away, (just over a week ago) she has only asked for it four or five times and has all but calmed down. Not a whisper of "I feel sick, something's hit me, I'm so ill, get the Doctor, I need the Doctor". It's quite extraordinary.

    Anyone else had/have a similar experience? I'd be really interested.

    Take care all

    Ditto :)
     
  2. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Ditto,
    No experience of it but pleased it has worked for you:)
    Love Helen
     
  3. EmJ

    EmJ Registered User

    Sep 26, 2007
    230
    Scotland
    Does the person you support still have some a way of contacting people in an emergency?

    My granny doesn't use the phone now. But for a while she would sometimes phone others late at night about concerns or to tell us she hadn't been given her meal. She was genuine though, she couldn't remember and she was having difficulty with the times of day. It was a very worrying time for her and it was important for her to be reassured by her family.

    Is there perhap a helpline they could phone instead of phoning the doctor all the time?

    Take care,

    EmJ:)
     
  4. Ditto

    Ditto Registered User

    May 17, 2008
    45
    Cape Town
    Sorry.. should have mentioned

    Sorry, I should have mentioned that my patient is incapable of being left alone for so much as a minute. She has round the clock care and is never ever left alone. But yes, all the phones are still in the house...she just doesn't know where. When I took the phones away, I told her that there was a severe problem with the lines in the area and all the phones were removed by Telcom for repair. I know it sounds very drastic, but as I said, this was an instruction from her specialist and it does appear to have lessened her "imagined or put on" distress.

    And please... before I am hailed as a terrible person for using the words "imagined and put on" this is a woman who throughout her life has strived to be the center of attention at all times. I once overheard her tell a dying friend (breast cancer) "oh well, nevermind. I'm also sick..I'm in bed now, yes terribly sick I've got a cold" which I might add she never had. Her friend died a few days later and all she was interested in when attending the funeral was what she was going to wear. What friends she has left refer to her as Mrs Moaner Groaner and most of her friends have known her for as many as 60 years.

    I know this all sounds incredibly harsh, but my patient is definitely a one off. She has led a charmed life of rich husbands x 2, endless holidays and parties and has never so much as washed a dish. She is rude, selfish, mean spirited, unkind, cruel, bullish, bossy, greedy and cares only about herself. She spends hours smiling at herself in front of the mirror, her last sentence of all conversation is always "but" ie- "Oh didn't so and so look pretty today? BUT its such a pity about her hair" or " so and so's house was very nice BUT she could have chosen prettier cushions". She calls the maintenance man "the boy", the housekeeper "the maid" and in her hay day she had a penchant for other women's husbands. In her healthy years she always called the Doctor for extra attention and affirmation of her beauty. It's been a ploy her entire life. She's so dreadful that her poor children were never even allowed to play in their rooms for fear of messing up "the best childrens bedroom in the area", and when she married her second husband she shoved her kids into boarding schools and went off to live a "gay" life in another country.

    Anyway, gosh...sorry for venting. Now my patient has vascular dementia that is developing into Alzheimers. I just see an old woman (88) who is frightened and confused and I am doing everything in my power to make her comfortable and keep her happy (difficult with a manic depressive) She is terrified of dying and always asking me if I believe in heaven and hell. She drifts in and out of lucidity and sanity and when if I'm just too exhausted to sit in her room for a moment longer to reassure her and tell her how beautiful she is and what a beautiful home she has then she instantly reaches for the telephone and starts calling the Doctors surgery. Two weeks ago she called our GP 11 times in less than twenty minutes. Ten minutes before the Doctor eventually arrived, she was quite hysterical,screaming and shouting that she wanted a doctor and he should hurry and that she would die any minute if he didn't hurry. When he did arrive, she quickly donned her bright red lipstick, combed and sprayed her hair and gleefully sat up in bed telling him that she was perfectly fine. After yet another examination, he found her to be in excellent physical health as always. Two days later having consulted with her GP, the specialist made the call to me to remove the phones.


    Ditto
     
  5. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Dear Ditto

    Please don't feel you will be "judged" on what you tell us about your ... patient.
    (OK,:rolleyes: I admit it, :eek: eaten up with curiosity at what the relationship is but of course you don't have to tell us! :p)

    People sometimes undergo personality changes when afflicted by dementia, but it sounds as though the person you care for has been a wild card for the whole ride! She sounds like an absolutely horrendous patient to care for (for the Dr. too!) and you must be completely exhausted.
    You are quite a "one-off" yourself, you know? I hope that some of her 'charmed life' rubs off on you, but without the negative aspects.
     
  6. ishard

    ishard Registered User

    Jul 10, 2007
    98
    Im sorry but you shouldnt be nursing this patient as you have obviously judged her past life, way before you knew her, and found her 'wanting'.
     
  7. rose_of_york

    rose_of_york Registered User

    Mar 22, 2008
    94
    York
    These forums are suppoed to be non-judgemental. Can you imagine how Ditto must feel when she reads this nasty remark? How do you know what she says is not true? How do you know how long she has known the person she is caring for? How do you know she has any choice about nursing her?

    Believe it or not it is possible to have dementia and not be "lovely" - it affects b-------s as well you know, and their condition doesn't make them any nicer!!
     
  8. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Ditto, I'm sorry

    :( Obviously I don't speak for everyone, but I hope in this the majority would be understanding...
     
  9. citybythesea

    citybythesea Registered User

    Mar 23, 2008
    632
    coast of texas
    Ditto, I'm sorry too..

    Lynne you speak for me also.
     
  10. ishard

    ishard Registered User

    Jul 10, 2007
    98
    #10 ishard, Jun 3, 2008
    Last edited: Jun 3, 2008
    “I know this all sounds incredibly harsh, but my patient is definitely a one off. She has led a charmed life of rich husbands x 2, endless holidays and parties and has never so much as washed a dish. She is rude, selfish, mean spirited, unkind, cruel, bullish, bossy, greedy and cares only about herself. She spends hours smiling at herself in front of the mirror, her last sentence of all conversation is always "but" ie- "Oh didn't so and so look pretty today? BUT its such a pity about her hair" or " so and so's house was very nice BUT she could have chosen prettier cushions". She calls the maintenance man "the boy", the housekeeper "the maid" and in her hay day she had a penchant for other women's husbands. In her healthy years she always called the Doctor for extra attention and affirmation of her beauty. It's been a ploy her entire life. She's so dreadful that her poor children were never even allowed to play in their rooms for fear of messing up "the best childrens bedroom in the area", and when she married her second husband she shoved her kids into boarding schools and went off to live a "gay" life in another country.” Ditto

    Whilst I appreciate that, as Rose of York said, that bas****s also get AZ the above comments made show a huge judgemental attitude of things that happened way before Ditto knew this lady.
    What has leading a charmed life and having rich husbands x 2, endless parties etc got to do with her AZ?
    Bear in mind here that when this patient was born (if she is 75 that’s 1933, please feel free to find out the lifestyle of most white people in SA at that time) and brought up in South Africa most women’s worth were judged on their beauty. It was very important for their futures for girls/women to be ‘beautiful’, the prettier you were the better life you had generally.
    The patient was either an incomer from England or Holland or she originated from those races and was encouraged to call people who helped ‘Boy or maid’.
    That was the political climate at the time. It is what this patient knows and has always known and should not have even been mentioned.
    Not allowing for the patients past history and how that affects her attitude now she has AZ shows an incredible lack of empathy.

    Would she be a more ‘deserving’ patient and elicited the same sort of comments if she had been a railway workers wife, ugly and broke?
    Perhaps nursing is different in SA?

    Would you want your loved ones nursed by a nurse harbouring these thoughts?
    I certainly wouldnt want my Mum within a hundred miles of this attitude.

    But each to their own.
     
  11. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,732
    Kent
    #11 Grannie G, Jun 3, 2008
    Last edited: Jun 3, 2008
    There is a degree of Double Standards in some of the posts on this Thread.
    Those who are quick to take offence at being judged are themselves being extremely judgemental.
    In this day and age no-one is forced to have contact with those they have such a deep disregard for.
     
  12. Ditto

    Ditto Registered User

    May 17, 2008
    45
    Cape Town
    Thank you to those who understand

    1. I don't recall mentioning that my patient was 75?

    2. Did I say she was white?

    3. I don't recall saying my patient was born and brought up in South Africa and I certainly didn't mention how long she had lived here?

    4. "Political Climate" What political climate? Did I mention politics?

    5. "Those races" What do you mean by "Those races"? What races are you talking about?

    6. "Judged her past life" On this one there is definitely an element of "not knowing what you are talking about"

    7. "England or Holland" ???? Why the presumption that she is English or Dutch?


    Ditto
     
  13. SusanB

    SusanB Registered User

    Jan 15, 2008
    155
    Hove
    Ditto, you have my support

    This post makes me so mad, I just had to respond.

    I'm afraid that it's true that there are some unpleasant people in this world who develop dementia. Ditto, your analysis and articulately written description of your "patient" painted a very clear and sad picture and none of us should be making negative judgements about how you feel about her. Sorry, but it sounds like dementia has simply developed her unpleasant characteristics and for whatever reason, you care for her on a regular and constant basis, DESPITE not liking her very much. I don't know whether this is a relative of yours or not, you don't have to tell us.

    My Mum has never been a nice person but out of moral obligation I am increasinly involved in her care and I do it because noone else will. I don't like her very much. Are you all shocked??? Ditto, I guess, is morally obliged to care for this lady and cares enough, for instance, to remove the phones to lessen her distress.

    I fear that the lady referred to has suffered from Narcissistic Personality Disorder (hope I spelled that right) all her life . I'm no specialist, of course, but put it into Google and note the symptoms!!

    Also, what's all this bizarre stuff that someone came out with regarding Holland, South Africa, the lady being 75 etc? I expect Ditto was baffled and upset by this. It's as strange as one of you deciding that I have red hair and I'm 5ft 5. (I don't, and I'm not).

    Anyway, not had any experience of distress with the telephones, Ditto but it sound like you did a good thing.

    Feel free to keep posting - I was interested and dismayed to read your current situation.

    Susan
     
  14. EmJ

    EmJ Registered User

    Sep 26, 2007
    230
    Scotland
    Everyone's experience of caring is different. I feel it's important that both the carer and the person with dementia are supported.

    Regardless of how someone feels about the person they care for both should be supported.

    Are you caring for this person all the time on your own Ditto? Do you get appropriate support?

    I worry that this may be your only way to get support and it is therefore important to focus on how to help you and the person you support.

    Take care,

    EmJ:)
     
  15. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #15 Margarita, Jun 3, 2008
    Last edited: Jun 3, 2008
    I can see the point that ishard making I don't feel that she being judgmental or making a judgment .

    Because also all I am getting at is that no matter what past or how the person was before AZ , they do come across more selfish as being selfish because they lose the ability of empathy, because of the brain damage from the diseases & that is a Fact its a symptom



    You must of overheard her when she had AZ , as she said she was sick , she was right she is sick . Did or do her friends understand what AZ does to a person brain ?


    All I am trying to do is make you understand that she can not help herself have any empathy for anyone else but herself .

    people with mental illness even without a dementica lose the ability to have sympathy for anyone . let alone someone with a dementica

    I understand how frustrating that must be for you , but imagine how it must feel for her in her brain , to know now at a time when she really ill with a brain damage all her friend disappear, if she had cancer I bet they show her more compassion then what they showing her now , just because she saying things that she can't help, saying the wrong things in social situation I hope your understand that in time where she coming from, soon in time she lose all social skills not only verbally

    No matter what her friends say about her don't liten to them . Make a relationship with this woman from her hear now from how you know her , even with what she says about another people who are ill , but then its your choice .

    She may of been moany gurmpy , so what ant most of us.
    she got a mental illness , sounds like her friends need more education on the symptoms of dementia.

    May be in time your learn more about the symptoms of dementica so it help you with your frustration of caring for her as it did with me .
     
  16. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Spot on, Maggie!

    Whatever this lady's personality and life style has been is now irrelevant. She is now a person with dementia, and needs care and understanding.

    I'm not saying you're not giving her care, Ditto, but I hope you are able also to give her understanding.

    I know that some members are caring for a parent where there has been a difficult relationship, and that must make it so difficult to care. But I get the impression (and I'm sure you'll correct me if I'm wrong!), that you are in fact an employee rather than a member of the family, Ditto?

    If this is the case, then I have to agree with ishard, I think you should consider whether this is the right position for you.
     
  17. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    PS

    what this thread was about . The phone

    Am wondering

    Is the change for the better , making her not so agitated in her taking the phone away ?.
     
  18. Ditto

    Ditto Registered User

    May 17, 2008
    45
    Cape Town
    YES! taking away the telephone has improved her agitation!

    Well!

    all I can truly say now is I'm shocked if not flabbagasted at the amount of venom flying around this thread. Its a great shame.

    My last post listed all the things that I did not recall saying as well as a whole bunch of stuff that some of you have presumed, so perhaps for the time being, I should just consider adding to the list as I really don't recall saying that "I didn't like my patient" It seems to me that a lot of you are in need of a punch bag so I'm IT!

    Actually and contrary to just about everything so far, I like my patient very very much otherwise I would not have searched the internet, seeking advice with my own preceious time, I would not be here continuing this conversation which is becoming nothing more than a waste of time and I certainly wouldn't be looking after her 24/7 with little time to myself, constant sleepless nights and daily abuse.

    I have known my patient for a long time, having originally been employed to act as her PA/Assistant long before she developed A/D. In those days my duties included organising and catering her bridge parties, making appointments for and driving her to hairdressers, beauty salons and luncheons. I was employed to oversee the general running of her household and daily staff and to diarise and cater lunch, dinner and drinks parties as well as to oversee all household maintenance and repairs and to do all the daily, weekly and monthly shopping.

    Though her associates and family often told me that she wasn't a particularly nice person, I was always sceptical, feeling that although they may have personal reasons for their feelings, that perhaps they were all exagerating somewhat. Yet, as the first few months with her came and went I realized that perhaps some of the tales and hostilities may have been warranted as she was quite a difficult woman. Nevertheless, I quietly got on with job and kept all personal opinions firmly to myself. My performed tasks, work ethics and attitude were always above reproach and after a few months at the job, we became quite fond of each other.

    A couple of years down the line, I noticed that she was becoming quite forgetful and disorientated. Her handwriting became scrawly, her personal diary was in a mess and she suddenly became quite scared of the dark. It was me that called the Doctor and explained her symptoms, it was me that took her to the Neurologist and held her hand while she had a cat scan and it was me that hugged her tightly when the Doctor confirmed my fears. It was also me that begged her GP to consider contacting a specialist for us to consult with

    At this point I should have left her employ, but after a meeting with her family ended up with old feuds rising up out of the ashes, I realized that she wasn't really going to get the love and care that she would obviously need in the future. So I stayed, kept the original dynamics of my job but took on the extra burden of "caring for an A/D patient"

    It's now been four years since diagnosis and she is all but bed-ridden. I am with her almost 24/7-365 days of the year. I've had little time off as I can't bear the thought of putting her into respite care and her children don't want the burden (even for a few days)

    Her family call her perhaps twice a month and visit her perhaps once every three months, despite my pleading with them that " they should forgive and forget"

    One of her children now manages all her funds and I am given a monthly budget to continue running the household. I have never asked for or been offered extra pay to compensate the fact that I am now also "carer and nurse". I'm doing it because I CARE DEEPLY!!!!

    The reason I went into detail regarding my patient's general personality was to try to get to the bottom of the "telephone" issue. Contrary to seemingly popular belief, I think specific personality disorders do have a bearing on the care and treatment of an A/D sufferer.

    For those that made such cruel statements as "I wouldn't want my mother within a hundred miles of someone like you" Thats a pity, because your mother would be receiving the very best care full of love, humility, empathy and understanding and I feel sorry for anyone with A/D that would not receive that standard of care.

    I cook for my patient, I read to her, listen to her mostly incoherent ramblings, I tell her jokes, sing to her, dance with her, cry with her, cry FOR her, I wrap her up, bundle her into the car and take her for drives when I can. I do her hair, clip her nails, varnish her toenails. I lie next to her when she's feeling frightened and get up with her in the middle of the night. I constantly reafirm her beauty and tell her she has the best house in the world and I always forgive her when she screams at me.

    Thanks to those that have made me feel like a complete and utter s**t. Was that why I came here??????

    As to the answers? She is 88 and Indonesian. She was not born or bred in South Africa, England or Holland and she has only lived here for ten years.
     
  19. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Thank you for the information, Ditto.

    When people post a question, it's so much more helpful if we have some background information, so that we can understand the carer's situation.
     
  20. SusanB

    SusanB Registered User

    Jan 15, 2008
    155
    Hove
    Hello, ditto

    I just posted a long reply and then managed to delete it, durr.

    I'm sorry and embarrassed that others have condemned you in such a way, just reading your original two posts made me think that something else was going on here that was generally outside the normal family or husband/wife relationships about which people normally post.

    Your caring and support for the lady in question shines through your beautfully written post - it almost seems from another age, which many of us would not normally be able to relate to - I hope you don't object to me saying that.

    I guess people made a judgement on the information you had given in a two-dimensional way, based on their previous experiences of parents/partners etc and that's a harsh call. Your story is unusual and of note and is both interesting and heartbreaking at the same time. But still you care about this lady and this comes through clearly and you should be applauded for that. I do hope that you are receiving appropriate support through whatever channels are available.

    People won't react well to this comment but IN MY OPINION (and that's all it is) there is a bit of a martyr attitude here (yes, hate me if you wish), which declines to condemn people behaving badly or relate 100% to individuals who struggle, don't want to care or simply don't like the idea of dementia with the person concerned. Devotion is all and we condemn those who for whatever reason can't cope, are emotionally absent, leave brothers/sisters to carry the burden (I'm guilty of this as well) or who, for reasons of their own, make negative or sometimes insulting comments about their "patients". It's sometimes a bit unrealitic, but there you are.

    Keep posting, ditto. Your situation is pretty heart breaking and I, for one, would like to support you.
     

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