Talking about dementia

Discussion in 'I care for a person with dementia' started by sheelz, Feb 9, 2015.

  1. sheelz

    sheelz Registered User

    Sep 1, 2014
    How does anyone feel if they have to talk about dementia while the person who has it is in the same room ? ie at the drs or hospital consultant or even with another family member. My mum doesn't make or join in conversation any more, some days she knows what people are saying, then she forgets, so I'm a little uneasy/don't like talking about how she is in front of for instance her dr. she has an appointment with the dr next week for a general health check. I have emailed her dr previously about mum. Any advice would be appreciated. Thank you
  2. Concerned J

    Concerned J Registered User

    Jun 15, 2014
    I just thought I share my experiences with you.
    My Mum as well as being diagnosed with Vascular Dementia & Alzheimers is also slightly deaf. Her GP is of Asian original with a strong accent so I'm not sure that Mum ever knows what is going on.
    Annoyingly the GP directs her conversation to me almost ignoring Mum which I feel is wrong. She should talk to Mum and I will listen and repeat as necessary.
    Having said all that Mum is always grateful that I'm there and I'm able to reassure her about things.
    I know this hasn't really answered your question but I feel I need to be with my Mum present when I'm discussing her situation.
  3. canary

    canary Registered User

    Feb 25, 2014
    South coast
    I think it all depends on how advanced the dementia is. At the beginning mum was very upset by suggestion that she couldnt cope and we got several "do you think I cant look after myself?" tirades. The last time we went to see someone, however, she had no idea what we were talking about and spent the whole time confabulating and flirting with the doctor :eek:

    If you think it would upset her try writing out a letter explaining what she is like and any concerns of yours and getting someone to attach it to her records before you go in.
  4. henfenywfach

    henfenywfach Registered User

    May 23, 2013
    its adifficult one

    hi there!

    I don't have a problem having to say about whats happening (my husband always says I have no problem with speaking public or other) but when it comes to caring for my dad who has dementia with lewy bodies it difficult as hes not always aware of what happening to him..or if we have discussed something hes forgotten pretty soon and has no recollection of it. Its so important that the drs or those that can help him are aware of the things that are happening..but very often your time with them is limited.
    we work a lot with word association and have since trying it almost two years ago ..and if hes trying to say something we use this, but very often he ll say tell I cant recall.
    with my dad he's more suspicious of one of us trying to speak to the staff before or after and due his delusions and hallucinations says what have you decided then...and generally its just to help him or to update them accurately. the experienced drs ask for our opinion anyway..but not all of them indicate that when they've asked him if hes ok doing something and he clearly isn't and don't ask us or my mum..then I generally speak to my dad and give him info to start a conversation knowing that he ll say well you tell him or her.
    it totally depends on the frame of mind hes in..and when feeling agitated and not willing to accept whats being asked of us he says here we go again the sgt majors off.!
    this is when hes totally unaware of what happening or something he does.

    I have emailed the gp before now and also the consultant..\I\ always make contact with the receptionists and ...if you can get a good receptionist..they are worth their weight in gold. !!

    I always try to not correct him in front of someone ...and at the end of the day so what if hes getting something verbally wrong..if the people cant accept it tough!!!
    The dr or hospital aspect is different though..if theres something they need to know..then I say ...would you like to speak to the dr about your...or what happened...and that then leads either the dr or my dad in to trying to respond!

    this doesn't always work... but does help sometimes.
    when talking to family about their diagnosis or how they are doing ,I try and be respectful and people genuinely enquire and care I ask him if hed like to explain to the family member..even if he only gives a frown to how hes feeling at least hes responding. again if he feels he unable to respond verbally and agitated cant find the words then I choose to say something kind in a quiet manner the affect of you had a dizzy spells this morning didn't you dad...then switch to a major positive or something that makes him happy such as his new found interest in paperweights...
    as carers we learn when and whats best to say and what our loved one would like to be said to people and how they will react. as long as whats best for them is at the heart of the conversation and we re being respectful that's the best we can do really.
    see things through their eyes and you can see that someone enquiring about things they might not be aware they are doing..especially if they have delusion seem like theres some sort of conspiracy against you..and youd react frightened to that. I would.

    the important things is that when people know someone has dementia or alzheimers or any diagnosis really they tend to talk to the person next to them..there might be a genuine reason for that and they mean no malice by it.... but how are they going to understand the person if they are not even speaking to them!!
    best wishes
  5. sheelz

    sheelz Registered User

    Sep 1, 2014
    Thank you for sharing your experiences and thoughts, my head spins sometimes trying to think and do the right thing as Im sure all of you feel the same!!
    The thing is, we've never told my mum she's got vascular dementia and she was diagnosed about 2 years ago that bad ? should she have been told ? , hence we don't know how to handle Dr situation etc. She also gets very agitated these days over the slightest thing, such as, if she cant get me or my sister on the phone 'immediately' and if she has post, such as a renewal of her house insurance or even junk mail, she thinks its personal for her.
  6. Miss shiraz

    Miss shiraz Registered User

    Dec 24, 2014
    We don't mention the dementia word whether directly to her or when in other's company, its her 'memory' problem. By her own admission she says she has a terrible memory. She hates it when we suggest she's not coping looking after herself. Its more about focussing attention on things that need to be done rather than 'telling her off ' for stuff that's gone wrong or not been done. Often easier said than done, I've bitten my tongue so many times and also said things I've later regretted.
    hopefully the Dr and most folk you need to talk to with her are already aware of the 'memory problems'. :rolleyes:
    She also forgets she's got dementia and its really not worth the upset of keep telling her - doesn't change anything or help us.
  7. tre

    tre Registered User

    Sep 23, 2008
    I hated this when my husband was in the earlier stages and even now it makes me feel uncomfortable. In the past I have typed something out which if possible I send in prior to the appointment but if not, I hand it to the consultant as we go in. I have found it really helps to have a friend available outside the consulting room who will sit with my husband so I can talk candidly at the end of the time and to include this on the typed info.
    They say that patients with dementia often get depressed. I think it must be very depressing for him to hear me tell them how things have deteriorated, even though his short term memory is poor. I think emotions such as sadness do linger even though the cause may be forgotten.
  8. chick1962

    chick1962 Registered User

    Apr 3, 2014
    near Folkestone
    I had that today with MT consultant. Had sent e mail prior to appointment but don't know if it was received or read before hand ?! Just could not bring myself to say things while my John was sitting next to me. Unfortunately we were deemed as coping and dismissed. Have to get better at explaining me thinks

    Sent from my iPhone using Talking Point
  9. Grey Lad

    Grey Lad Registered User

    Sep 12, 2014
    North East Lincs
    I feel for you chick. It is so difficult to say it as it is with your loved one sitting next to you. Surely professionals are aware of this and should read what we send to them in private. If I was to spell out Maureen's incapacity in front of her she would be distraught and resort to denial. So little do they know that she often struggles to find the car door let alone the seat belt and if they were to see her try to make a sandwich they would become well aware of her limitations. I just wonder if it's all part of a conspiracy to manage finances: the less they acknowledge the less it impacts upon dwindling budgets. I am sure none of us on T P are Benefit Scroungers we just want honesty about our entitlement as carers and for our loved ones.
  10. sheelz

    sheelz Registered User

    Sep 1, 2014
    Hi canary thanks for your reply, that's also what my mum does when she see's her consultant(male) or her GP (female) and she tells her 'what a nice woman she is 'etc , then wants to give them some money for being 'so nice & helpful' she also does this to shop assistants, then I'm trying to get her away from them apologizing !!

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