Being honest and feeling such guilt

Discussion in 'ARCHIVE FORUM: Support discussions' started by kayjan, Nov 25, 2007.

  1. kayjan

    kayjan Registered User

    Nov 11, 2007
    Hi - I am due to take my mum to see a Doctor in two days time and I have this fear of explaining my mum's dementia in front of her, as she believes she is alright, and she can come across as being alright when in other peoples company.

    The big thing is she believes that her neighbour is spying on her and I don't want her to feel that she doesn't trust me anymore if I tell the Doctor this information. She won't even talk to me about certain things in her lounge in case her neighbout hears us! So I get taken to the bathroom so that she can talk to me in a whisper. It really scares me that her reality is that this is happening. I am wondering if I should ask to talk to him on the phone before we see him to explain things. I can't think what else to do. I am wondering if anyone else can give me some advice.
    Kayjan xx
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    I would either try and have a conversation with the doctor before, or drop a letter in to explain.

    It is a balance, worrying about doing the right thing, yet not offending the person concerned. For me the correct balance is not to cause the person any more confusion than is necessary.

    If the doctor is primed with some background information, then they can observe accordingly. Doctors generally know little about dementia and the associated behaviours - in my experience.

    I always acted as if I knew as much - that is, as little - as my wife, but I also tried to interject clues during consultations.

    These are just my thoughts....
  3. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    I would definitely either phone or write before the appointment. If your mother is paranoid, it will not do any good, and might do actual harm, to bring this issue to the doctors attention at the time of the appointment. I would agree also with Bruce about this - don't be surprised if the doctor has little or know understanding about this. I would also, when writing the letter, specifically ask the doctor not to mention the fact that you have comminicated before hand - again it may not do any good, but it might.

    The only other appoach I can think of is to try to get your mother to tell the doctor about "these people who are spying on her" and how it worries her. I think most doctors would be able to interpret that as paranoia. By that I mean present it as a factual thing - you're not belittling her experience, you're just getting her to tell someone in "authority".
  4. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Kayjan, welcome to TP.

    Bruce is quite right. It's a very difficult balance. It's so important not to destroy the person's morale, and yet the doctor needs to know the exact situation if you are to get the help you need.

    I'd write a letter, spelling out your concerns. If possib'e, could you deliver it to reception tomorrow morning? That would give the doctor time to read it before your appointment.

    Let us know how you get on, it's so worrying when people think they are being spied on.

    Good luck,
  5. connie

    connie Registered User

    Mar 7, 2004
    Hi Kayjan, would have to go along with the other members on this.

    A letter beforehand could be such a help.

    Think Jennifer's suggestion also needs a second thought. Would mum open up under those circumstances.
    Please let us know how you get on. Such a worrying time, so try not to feel guilty. You are doing the best you can to help your mum.
  6. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Yes, it's very dependent on personality and also, I think, how firmly the person really believes what is happening is true. I think it's nebiroth who's father was/is so convinced by his delusions that he wouldn't have had any unwillingness to talk about them to anyone. My mother, on the other hand, had very mild delusions that even she wasn't convinced were real, so I doubt she would have opened up. I would definitely go the note route in preference - the only possible downside being that unless the doctor knows everyone pretty well, he/she "might" be suspicious of their motives, particularly if the sufferer presents well. The problem with paranoia is that the sufferer can become quite adept at hiding these delusions from others (after all, they might be in league with the perpetrators) which makes obtaining treatment very difficult.
  7. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    Dear Kayjan,
    I agree with other threads with the letter before hand. I have been in the same situation and it had been very helpful for the Doctors/Consultant.
    You are going the rest of us here on T.P. with the GUILT. You are not alone, you are someone trying to do the best for your Mother. I wish you all the best for the appointment. Christine
  8. gigi

    gigi Registered User

    Nov 16, 2007
    East Midlands
    Hello Kayjan- First of all I'd like to say don't feel guilty-what you are doing you are doing with the best of intentions. Secondly the doctor should realise that you have a reason to be there. Thirdly I agree with Brucie-if there is some way you can contact the doctor beforehand and fill him in on some details-have had to do this with my husband in the past but we are lucky in that my husband's gp is very sympathetic and has known Eric a long time. The most important thing you can do you are doing and that is to seek proper help. I wish you well in this-know how hard it is for you. Please keep in touch
  9. Tess

    Tess Registered User

    Nov 29, 2005
    I live in west wales
    Hello Kayjan

    I had exactly the same situation with my Mum some years ago when we realised there was 'something not quite right'. I telephoned the surgery and spoke to Mum's GP to explain about her 'memory problems' and the change in her personality. She was due to see him about her blood pressure but, at that appointment, the GP started the ball rolling and referred her to the psychiatric dept at the local hospital. Fortunately, she has taken all of her appointments like a lamb and just accepts that she is going to see a doctor. She doesn't realise that she has Alzheimer's - just 'memory problems'. The only thing we have to make sure of is that she is not told of any appointment until the morning of the day she is going to the hospital. It's absolutely amazing that she can't remember what you said 5 seconds ago but if you tell her that she has a hospital appointment next week she worries about it for the entire time and never forgets about it.

    My thoughts are with you. TP is such an amazing place. I don't post very often but I visit it regularly.

    Thoughts and hugs.

  10. kayjan

    kayjan Registered User

    Nov 11, 2007
    Thank you all so much for your guidance. It helped a great deal.

    I think it went ok yesterday. Kept her dignity etc and there were no tears, at one point during explaning something to the Dr I held her hand, and gently said to her, 'mum you brought me up to be honest like you', I could see that she appreciated that. She did get quite agitated when answering the Drs questions but it was all over in a jiffy. A visit from the memory nurse is being arranged. After the appointment she seemed quite relaxed.

    I very much appreciate all your kind thoughts. :)
    Kayjan xx
  11. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Well done, Kayjan. I'm glad it all went so well, and your mum wasn't upset.

    Let's hope the tests go through quickly, and you can start to get some help.
  12. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    kayjan - I'm so glad it went better than you expected and/or feared. Did you manage to give the doctor a heads up before you went, or did to manage to deal with it at the time?
  13. wesbrencro

    wesbrencro Registered User

    Jan 16, 2008
    visiting doctor

    I have just found the threads re this, interesting, as I have an appointment with my aunt next Monday. Last time I took her was the first time re dementia, I did also manage to see the doctor on my own that time , told her it was to do paperwork. He did some blood and water tests, we go back, she thinks, for the result of the tests. He did mention memory clinic to me, I don't know if she will go. Yes she keeps asking when we are seeing the doctor, (though it's on her Calendar) strange how that sticks in her brain.
    She does have lots of delusions/ hallucinations/ dreams, also forgets things after 2 minutes, also now forgets to eat often,, gets food out, forgets it. She will deny there is anything wrong, can have an intelligent conversation in other ways ( she is an ex teacher) .
    This helps me to read other people's thoughts re seeing the doctor.
  14. Memori

    Memori Registered User

    Sep 22, 2006
    I have been through all this with my Mum this last year, phoning the Doctor having the appointment the blood tests and urine tests, then the Memory Clinic and the Doctor there, she has never been told the A word or the D word just memory problems, the nearist she came to it was when I showed her a leaflet dealing with the problems and she threw it at me in discust, I still cannot help telling her the truth when she says something wrong, now she thinks she has been places when I know that she has not, dont be upset if you have cross words as they will be forgotten the next day or even sooner in our case, she comes down some mornings and says dont I have to go to work? and is now having care workers in to make sure she has a cooked meal, but cant remember if they have been when I phone, and I am now making about six phone calls a day to her instead of the two I made before, to make sure she is up when they call and afterwards to see if she answered the door before she forgets about it.
  15. margaret savage

    margaret savage Registered User

    Mar 20, 2008
    totally understand how you feel

    I am new to the Forum and speak on behalf of myself and my sister as carers for our mum who we believe has dementia or AD and is waiting for an assesment. We completely agree that it is very difficult to talk freely to the assessors when you do not want to alarm a parent. When we saw the doctor I wrote down how we felt and handed the note to the receptionist and asked her to get the doctor to read it before we saw her. This she did and she made a great effort not to let mum know we had spoken about her ourselves, but that the specialist had been concerned for her confusion.
    We are constantly in turmoil about doing the right thing for mum, who is 80 this year. She began quite suddenly last summer to have a few problems with memory and confusion and has steadily worsened. The two main things which distress us immensely are the fact that she gets really agitated when it comes close to the time she knows we have to go home, although we take it in turns to stay with her every day between about 10am and 6/7pm, but she wants us to be there 24 hours and cannot see that we need to go and see our husbands and children/grandchildren at some point. The other major stress is the thought that she stays up most of the night and by morning feels she has been alone for at least a day or two. She has also started ringing other members of the family very early in the morning asking them when they can come and see her. We get very stressed at times with the worry and guilt feelings, and I feel as if I never do enough for her and worry all night about her being alone.
    Sorry to go on for such a long time, but the thoughts just keep on coming.
  16. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Margaret, welcome to TP.

    We're all under tremendous stress her, so we do understand what you are going through.

    I hope you'll stay with us, and find a lot of support her.

    Best wishes,
  17. margaret savage

    margaret savage Registered User

    Mar 20, 2008
    Hi Hazel,
    Thanks for the welcome, I am sure we will get lots of benefit from talking things through with other carers. I had a bad start to today as I took mum to the local co-op where we shop every week, but when we got there she didn,t want to get out of the car so I asked her not to try and get out until I got back. BIG MISTAKE! After diving around shopping for both our weekly shops, I returned to find her gone. Panic set in and I didn't know which way to head in search of her. People were very kind and tried hard to help me but I ended up ringing my brother in law to come and help. We finally found she had walked in the high winds and cold back to the estate she lives in - which is quite a hike for me let alone a woman of her age with both rheumatoid and osteo arthritis. When we finally saw her she was coming out of a neighbours house having had a cup of tea with them, telling me they had invited her round. I felt physically ill for a little while but now am just happy she came to no harm.
    By the way I would be very interested to know if anyone has been offered a sedative etc. to help a sufferer like mum, who wanders around a lot at night, to sleep and what the experts think of this idea.
    Thanks to all of you who take the time to read this and hope to speak again soon. Bye for now.
  18. Margarita

    Margarita Registered User

    Feb 17, 2006
    #18 Margarita, Mar 21, 2008
    Last edited: Mar 21, 2008

    They is ant psychotic drugs that can be given at night time that help them sleep during the night time , but the experts do say that its only ment to be given for a short period of time , not for the long
    term . If I was you I would talk to the doctor about it ,
    as I don't think ant psychotic drugs, are meant to use as sleeping tablets .

    From my own experience , when my mother got to that stage wondering around at night time , she had to come to live with me , or she would of had to go into a care home .

    its a behavior symptom of dementia wondering around at night time , I gave my mother sleeping tablets to sleep they would not knock her out at night time while she was living with me , I found out that she fely lonely sleeping in a room on her own . So a TV on all night help her sleep in a room on her own .

    loads of reassurance & love , saying that I was only in the next room help her to sleep mind you she still pop in asking if she could sleep in my bed . so had to say no , take her back into her room , but that all settle down after a very long sleepless night for me , but it all does pass.

    could your mother just be lovely scared confused so she does not sleep at night time , she live alone yes ?

    My mother was just the same wanting me they 24 hours a day , its because they scared of being alone because they have became so confused in they mind , that I you or your sister , became they security blanket , its part of one of the many dementia symptoms you are seeing .

    My mother also would wonder off when I told her not to move from where she was sitting , me rushing around looking for her , that I ask a police man in his car if he could help me find her . he kindly went looking for her , found her for me.

    All those symptoms your talking about do pass , but while your living in it with your mother it does seem like it never end , but in a blink of an eye they go into a different stage . does get very stress full for you in trying to cope with it .
  19. margaret savage

    margaret savage Registered User

    Mar 20, 2008
    Hi Margarita,

    Thank you for your very welcome advice. I feel happier knowing it will not always be so scary.
    Bye for now,
  20. margaret savage

    margaret savage Registered User

    Mar 20, 2008
    Hi everyone,
    Well, things are rapidly getting worse with our mum. She has been found wandering around about 4 miles from where she lives one evening and a very kind gentleman took her to the police station. My sister went to pick her up and was amazed houw calm she was, saying "I'm in trouble now" to the police on duty and smiling sheepishly at my sister. She had also called somewhere at a fish shop and was carrying 3 fishcakes in her bag - go on it's ok to have a little giggle at this, as everyone else couldn't help doing!

    After this shock, we have had to take mum home to our houses in turn evey night, but she is wandering in and out of our bedrooms and turning all the lights on most of the night.

    We have had a call from SS and they were surprised how quickly mum has deteriorated, as are we. The lovely man quickly contacted her doctor and we are going for a mental health assesment with her tomorrow. I am dreading this as I am sure mum will be very angry with us and I know the guilt will be horrendous again, but she must be safe and we cannot see to that ourselves 24 hours a day. I also have had my daughter in hospital and felt really exhausted trying to cope with mum and doing my share of looking after my two lovely grandchildren for her. Will be so glad when tomorrow has been and gone.
    Wish me luck and goodnight, god bless to you all.

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