Should I help her with the questionnaire?

Discussion in 'I care for a person with dementia' started by camkam, Jul 25, 2015.

  1. camkam

    camkam Registered User

    Jul 20, 2015
    63
    Hi Everyone, My Mum has her initial assessment by the Memory Clinic on Tuesday next week. She's phoned me seven times over the past two days to tell me about the questionnaire she needs to fill in before the assessment. I'm going to be there when she has the assessment but I don't know whether or not to help her do the questionnaire. If I leave her to do it herself, she'll forget to do it so I can either ask her the questions and fill in the truthful answers (which won't be the answers that she gives as she think's there's nothing wrong with her) or I can tell her to fill it in herself! Either way she's going to become very agitated and upset because she thinks it's a conspiracy led by me to get her into a care home. She's actually forgotten about the appointment now, and has forgotten that I'm going to be there too.
     
  2. nitram

    nitram Registered User

    Apr 6, 2011
    18,295
    Male
    North Manchester
    I'd leave her to fill in the questionnaire by herself but take a copy and fill in anything factual,name, date of birth, address,.... leaving anything subjective blank.

    Take both copies to the assessment.
     
  3. canary

    canary Registered User

    Feb 25, 2014
    9,327
    Female
    South coast
    I would leave it for her to fill in and if she forgets, or doesnt know how to do it then that will tell them a great deal.
     
  4. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    3,358
    south-east London
    When my husband was given a questionnaire before his first assessment I helped him fill it in with the answers he wanted to give. As far as I can recall it was mostly a few basic facts about himself and then a range of questions about how he was feeling about himself in general and how he felt others saw him.

    If it is the same one, helping someone fill it doesn't detract from the test itself - that had its own set of marking criteria to show where there were problem areas and that test was purely between my husband and the assessor.

    That having been said, I was given ample opportunity both then, and at subsequent meetings, to give extra information on various things as I felt necessary. Not in a contradictory way to my husband - just as clarification of some points really.

    It was never a problem for us. By helping him fill out the form ( which the Memory Clinic was quite happy about) I was simply helping him express what he thought - whether I agreed with it all or not.
     
  5. betsie

    betsie Registered User

    Jun 11, 2012
    250
    During my mums first trip to the memory clinic, as part of the assessment she had to write a sentence. She wrote " why have you brought me too this place".

    It succeeded in making me feel like the worst daughter in the world. Two years on and she has totally forgotten she has dementia. Just be prepared for her to hate the whole experience.

    My only other issue with the memory clinic is that you don't get to speak yo the nurse/ doctor in private. I hate talking about my mum like she isn't there, or really saying how bad she is whilst she is listening. We are going again next month and I phoned in advance to ask if I could speak to the nurse in private before my mum is called in. Not really sure of the value of the memory tests. You know each time you go they have gotten worse, how does a score out of 30 help?
     
  6. Linbrusco

    Linbrusco Registered User

    Mar 4, 2013
    1,539
    Female
    Auckland...... New Zealand
    Oh dear not much different here in New Zealand.
    Mum (with AD) had an appt with the Geritrician the other week after a year.
    I had asked if I could talk to him privately or give him a letter beforehand, and I was told as Mum was the patient he had a duty to inform Mum of whatever I told him.

    When he asked Mum the usual questions which obviously Mum has no insight into how much she has deteriorated, so in her eyes she was just fine and dandy, he asked me the same.
    I wasn't going to upset Mum, and risk my relationship by contradicting what she said in front of her so all I did say was that Mum needed a lot more supervision.
    The upshot of the visit was the the Geritrician thought Mum was stable with no change and discharged her from his care and back to her GP!
    To make matters worse, despite having my address for appt letters and correspondence , he sent a copy of his clinic visit to Mum :eek::mad:
    She immediately phoned me to tell me, and I'm not sure how much she read or how much she took in, but she was not happy. There were even things written , which I did not say. Maybe the Geritricain surmised them but had no right to add anything that was not verbally said.
    I saw Mums GP and let him know exactly what was what.

    In the meantime Dad is under the Memory Team as he has cognitive impairment, and he had to fill out a questionnaire mainly regarding caring for Mum.
    He said he needed my help, as he wasn't Mums carer, and didn't want to get it wrong.
    I said that if I helped him he would have to be honest in his answers and how he felt.
    He said he couldn't be bothered.
    He has an appt soon with the Memory Team nurse who said she would try and get Dad to talk.

    I think if you help your Mum fill it out, put what ever answers she gives to keep her happy.
    However if you think different, and you have the ability to talk/email the Memory Team nurse privately then do so.
     
  7. camkam

    camkam Registered User

    Jul 20, 2015
    63
    Hi thank you for all the comments, I won't get to see the questionnaire until I go to Mum's tomorrow (as I've said in previous posts I live 200 miles away), but she did tell me some of the questions when it arrived - "can you problem solve?" - she would say yes but there's no way that she can problem solve now. "Do you lose items regularly?" she would say no, but she loses her two sets of keys in the house regularly! I'm hoping that I can have a word with them privately, because as you say it feels wrong talking about her whilst she's sitting there (although she's so deaf she can't hear anything).

    I'm not looking forward to the inevitable arguments and I'm going to try very hard to treat it as though it's her alter-ago who is being aggressive and argumentative, but I'll let you know how we get on.
     
  8. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    9,765
    Merseyside
    I wrote down a list of my concerns & passed it to the Dr when he arrived.
    I've also started to sit slightly behind Dad in appointments so I can nod or shake my head.
     
  9. Pegsdaughter

    Pegsdaughter Registered User

    Oct 7, 2014
    129
    London
    When the consultant visited my mum first off they contacted me to arrange the appointment and second he insisted on speaking to me in private. My husband took her out of the room and distracted her. He wrote the report up there and then and said she lacked capacity to make decisions about her own care. That was in Reading. During the consultation she kept turning to me to give the answers, she did not know what a sentence was and decided we were living in1913 and when prompted about when www1 started she said next year..


    Sent from my iPad using Talking Point
     
  10. camkam

    camkam Registered User

    Jul 20, 2015
    63
    #10 camkam, Jul 26, 2015
    Last edited: Jul 26, 2015
    Good idea Cat27, I'll do both!

    The memory clinic were supposed to write to me to arrange the appointment but they didn't, the only way I found out was because Mum was furious when she read the letter but she couldn't tell me when the appointment was so I suggested she take the letter to the warden (she's in a sheltered housing complex with the warden isn't supposed to give any social support but she helps Mum), and the warden texted the appointment to me and kept the letter so that Mum couldn't ring up and cancel it! Mum was so angry that a couple of days later she can't remember anything about it, this is what happens to her, if she gets stressed or angry that day becomes non-existent she just totally forgets about it.
     
  11. Beate

    Beate Registered User

    May 21, 2014
    11,489
    Female
    London
    I dont remember OH having to fill in a questionnaire so when I first read your question I thought if this is like a memory test, of course don't help her. But they seem to be making the classic mistake of asking the dementia patient the questions they ought to ask the relatives so you can either fill in the form truthfully for her or let her fill it in herself then add a covering letter saying they cannot take her answers for face value and this is how it really is.
     
  12. Pear trees

    Pear trees Registered User

    Jan 25, 2015
    442
    I also do not think the Memory Clinic questionnaires and assessments have any practical use, they are purely for NHS statistics.
    My mother's written sentence at her last assessment was 'I don't like this stupid b**ch' referring to the nurse and she was obstructive and argumentative throughout. At the end we were told she had dropped 2 points. We did not need this pointless excercise to be told her dementia has worsened!
     
  13. camkam

    camkam Registered User

    Jul 20, 2015
    63
    Well we had the memory clinic assessment on Tuesday, Mum actually lost the questionnaire, and we found it about half an hour before the assessors arrived. Mum did as well as I expected but I was quite surprised on some of the questions that she failed on so we now have to wait for the diagnosis, I'm sure there will be one but I don't know what it will be. At the end of the assessment she became very angry and told me and the assessor to '****** off' as she didn't like being interrogated. She blamed me entirely for arranging the assessment even though the assessor told her that her own GP had requested it.

    I have to say that on this forum someone suggested treating the patient as a Jekyll and Hyde, with Dr Jekyll being the normal person and Mr (or Mrs) Hyde being the nasty person who appears and dishes out insults and abuse but who shouldn't be taken seriously. I've taken this on board and I find it much easier to deal with Mum's personality changes now, I don't take things that she says personally and they don't upset me - it's much less stressful. I've also just read 'Compassionate Communication' mentioned on a few threads here, it is very, very good and I'll definitely take on board some of the suggestions & comments.
     
  14. Emsy

    Emsy Registered User

    Feb 3, 2013
    45
    I wrote a letter about my dad to take with us to his 1st appointment as he didn't think there was anything wrong with him either & would get very angry if we tried to explain there was. The letter just explained the major changes in his behaviour and that he thought he was fine & didn't understand what the fuss was about. At the end of the letter I asked that it not be shared with or in front of Dad at future meetings.
    I discreetly handed it to the consultant on our way out of the room after the assessment.
    Hope that helps & good luck!
    Em x
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.