Is it honesty vs. kindness?

Discussion in 'I have a partner with dementia' started by ashtreex, Feb 1, 2019.

  1. ashtreex

    ashtreex New member

    Dec 16, 2018
    9
    Female
    London
    My husband is currently categorised as having mild cognitive impairment, what type is not yet diagnosed. He's noticeably getting worse. He is due to see the consultant next week and he's always content that I go along. My dilemma is about letting the consultant know my observations of his worsening symptoms. On the one hand I want her to know what I see happening, but on the other hand, it seems cruel to force my husband to hear what he resists fully acknowledging.

    The last time we saw the consultant I wrote a note for her and gave my husband a copy. He seemed okay with this but I can imagine it would be so depressing for him to hear how he's getting worse. Then again I think how in times past people with a cancer diagnosis would never be told about it because it was thought too upsetting for them. Also he might want to challenge what I say. But then, he would probably forget what I said fairly soon!

    I would really welcome hearing how others have dealt with this, it must be a common dilemma?
     
  2. Lawson58

    Lawson58 Registered User

    My OH's consultant always gives me a few minutes while OH is doing his tests, to hear to what I have to say about any changes I have noticed or any concerns that I may have. My husband has no idea of what I say and the consultant understands that he would challenge me on everything I said. But it is important that this information is conveyed to the doctor because it is the best way to decide what is the best treatment for him.

    I do not feel that I am betraying my husband in any way as he has few insights as to his condition and it is in his best interests that the consultant has all the information possible. It is also in my own interests as the consultant tells me what he thinks about my husband's progress and it is an opportunity for me to ask questions too.

    If it possible for you to arrange something similar, then I think you might find it helpful. Comparing cancer and dementias is a bit like comparing apples with oranges. While some PWD have insight into their situation, most don't and you could tell a PWD many times about their illness and it may not register. And that would be the opposite for cancer patients. In the days when cancer patients were not informed of their condition, most had worked it out anyway which is why doctors no longer do that. I don't think you could say the same about PWD.
     
  3. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,442
    Female
    Dundee
    When my husband had appointments at the memory clinic I used to hand in a letter a day or so before the appointment. This meant I avoided having to talk about my concerns in front of him.
     
  4. marionq

    marionq Registered User

    Apr 24, 2013
    5,793
    Female
    Scotland
    Honest discussions with my husband are as fleeting as snowflakes because he cannot hold onto a memory. It is therefore pointless to be honest in the way we once would have been. I can’t be sure if it causes him momentary pain so I don’t do it. I either write details down or quietly let the doctor know the reality of the situation. The gradual slide of Alzheimer’s means that I am continually adjusting how I deal with our life.
     
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,385
    Kent
    I always sent a letter/email to the consultant's secretary a week or so before an appointment, charting any changes so they wouldn't be discussed in front of my husband .

    My husband always said he was fine in answer to every question.
     
  6. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    757
    Male
    Newcastle
    I used to be worried about speaking openly in front of my wife - primarily to her GP but also to other professionals - but was uncomfortable with the thought that by listening only to her they would get a picture that was far from the truth. I don't challenge her directly but counter what she says by presenting the true situation in a neutral way, using different words. I did this when a lady from social care visited this week to do an assessment - as well as the tried and tested shaking/nodding of my head out of my wife's sight - and this seemed to work quite well. To present a fuller picture I sometimes follow this up with an email or telephone call. This is usually only necessary when dealing with someone with little understanding of dementia.

    It does no-one any good to go along with a fictitious view of the real challenges that my wife is facing, even if sometimes this means speaking in front of her and risking anger or hurt, which seems to be momentary and soon forgotten.
     
  7. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    406
    Female
    Basingstoke, Hampshire
    It is a good idea to get word to the consultant before the appointment. However if this is not possible then your way of handing a letter to the consultant at the time with a copy to your husband is a good alternative. What you can do is have different wording in the copy you give your husband. If he is at the stage where he is sensitive to what you tell the consultant, you are only doing what is best for him that's not really cheating.
     
  8. ashtreex

    ashtreex New member

    Dec 16, 2018
    9
    Female
    London
    Thanks for such helpful replies. Good point that it's not like he's got cancer. I see I'm not going to help my husband by shrinking from telling the consultant the true state of affairs so I'll email her beforehand.
     
  9. Banabarama

    Banabarama Registered User

    Dec 28, 2018
    33
    Female
    Sussex
    I’m sorry to butt in on this thread but I am interested that people have appointments with consultants for dementia. We did see a consultant once for diagnosis but that was it. One appointment (this took just short of six months). One prescription given via GP. Then signed off. No follow up offered. One cognitive stimulation course then signed off their books too. It seems from the replies to this thread that some of you have more than one consultant appointment. Maybe I am feeling a bit neglected as this is such a hard and lonely road.
     
  10. marionq

    marionq Registered User

    Apr 24, 2013
    5,793
    Female
    Scotland
    Yes I think it varies across the UK.. We would go every six months over a six year period and in early stages we had a CPN who came out to the house once a month. In both cases we were asked if we wanted to be discharged and I kept the consultant going until recently. My husband is now too tired to be dragged to appointments and there is nothing more the psychiatrist can do but when I cancelled she told me if I ever felt the need to contact her and she would make a home visit. That did surprise me as I know how busy they are. I think it is because she has really got to know my husband over these many visits.
     
  11. AliceA

    AliceA Registered User

    May 27, 2016
    2,359
    It does vary so much. It is confusing.
    Once the diagnosis was given after a hospital stay and confirmed by a brain scan to rule out any other reason we had one home visit from a memory nurse.
    She was frank and answered my questions.
    My new GP asked for a another memory test a few years later and that was refused as the GP was told it was a progressive disease and there was no point.
    I had signed up for Talking Point but never logged on. I read as much as I could including several written by the families of people. This gave me a broader view. I had dealt with others who had dementia in varying ways.

    Last year I had another Carers Assessment this time by someone from the Alzheimer's society this gave me more specific information. She advised Talking Point so I came back on.
    TP has been a great support, one has to remember not all things apply to everyone.
    Personally I cannot see the point of continual tests, but the idea of someone giving ongoing support visits sounds like bliss. I think the lack of coordination and lack of physical respite is a great problem everywhere.
    To get the best help we can we have to be really open with the professionals, it sounds disloyal sometimes.
    In the earlier days we agreed as a couple that had to be done to help us both deal with present circumstances.
     
  12. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,336
    East of England
    Your experience was mine too @AliceA almost word for word, hospital, scans, diagnosis and a nurse visit then back to GP. He is lovely but I cannot be seeing him all the time and TP is my honest support. Also I do say what is happening in front of him to the doctor but I try to do it in an inclusive way so that he feels he is part of the conversation. He never remembers the consultation anyway.
     
  13. Baggybreeks

    Baggybreeks Registered User

    Mar 22, 2017
    75
    Scotland
    My husband, who died on Tuesday after 6 and a half years from diagnosis saw a consultant twice in the first year then had a Community Psychiatric Nurse for a year. Also I had a CPN who was wonderful support.
    But no more consultants. It seems they are there just to confirm diagnosis.
    GP handled drug prescriptions and correspondence went from him to the consultant and back when he needed his meds upped.
    You do feel left alone to cope but look for help. Scotland also has a great helpline, for us in Scotland, altzscot.org can provide extra support.
    0808 808 3000 at any time of day or night.
     
  14. AliceA

    AliceA Registered User

    May 27, 2016
    2,359
    For several reasons I fancy moving to Scotland, you have just added another. Too late now but we do indulge in programmes on TV, just seen a series on the Scottish lochs. X
     
  15. AliceA

    AliceA Registered User

    May 27, 2016
    2,359
    I try to say we as much as I can and where I can. After all everything affects us both and it is still a partnership.
    Our new GP is good but like all drowns in paperwork, she just does not have the time. Occasionally I ask for a double appointment and try to cover for us both. I would love a support worker attached to the surgery just as a back up.
     
  16. WA123

    WA123 Registered User

    Jan 20, 2018
    85
    My husband was diagnosed at 58 5 days before Christmas 2017. We were given the diagnosis, told to wait for a prescription of Donepezil and then sent on our way. No information of support groups, no advice on what to do next. 3 weeks later we had a phone call from the memory clinic to see how he was getting on with the Donepezil and the dose was increased. Another phone call 3 weeks after that and then told we would be referred to another team in 12 months time. That was it. No-one has contacted us to see if we need any help or to ask how we are coping. Just before Christmas the DVLA sent a form for my husband to reapply for his driving license (now an annual event) and the letter said they would be writing to his GP for an opinion. At this point I realised that he hadn't seen a GP for 18 months (6 months before the diagnosis) even though he ended up in A & E last March with Bells Palsy. Our surgery has been absolutely useless. It took 12 months for them to set the system so that a message flashes up regarding his dementia whenever they put his name in. Until then whenever they wanted to make an appointment to review his anxiety medication they would phone to make the appointment with him and he would promptly forget about it. None of the appointments about the anxiety linked it to the dementia until I specifically mentioned it. Oh and it took me 8 months and lots of searching on the internet to find that we do actually have support services in our county and that at least one is supported by the council. Unfortunately the info was well hidden on the county council website. Thank goodness for supportive family and friends is all I can say.
     
  17. Platinum

    Platinum Registered User

    Nov 7, 2017
    66
    Female
    South east
    How kind of you to give this information at what must be such a very sad time for you.
     
  18. Banabarama

    Banabarama Registered User

    Dec 28, 2018
    33
    Female
    Sussex
    Yes I agree it is very kind of you to provide information at such a difficult time. But I imagine you, like so many here, have had many difficult times dealing with this cruel disease. Take care of yourself, remember the good times and keep posting in this helpful, understanding community.
     
  19. WA123

    WA123 Registered User

    Jan 20, 2018
    85
    Hi @Baggybreeks I'm so sorry. When I first read your post I thought you said your husband died 6 and a half years ago not 'on Tuesday' and I then wrote about my lack of support without even thinking of what you're going through. Sometimes I think we get so bogged down with our own difficulties that we stop thinking about others (at least I do although others, I've noticed, are far more sensitive). I hope you have all the support you need at this moment and I too would like to thank you for sharing your previous experiences.
     

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