Dementia? What dementia?

Discussion in 'ARCHIVE FORUM: Support discussions' started by jks, Feb 19, 2006.

  1. jks

    jks Registered User

    Jul 2, 2005
    West Yorkshire
    I'm feeling really annoyed with my Mum.

    On Friday we went with Dad for his Memory Clinic appointment. This was his first one up here, as they have recently moved to be nearer me. All went well, the consultant is going to increase Dads Reminyl and also move him on to a one-a-day 'slow release' tablet that gets rid of the peaks and troughs of taking three tablets throughout the day.

    He gave my Mum a few pages of questions to complete and send back to him, about how Dad is, and how his behavoir makes her feel.

    I can't believe the answers she's put!

    Talk about 'playing things down'.....her answers are a joke! For example, can he prepare a meal? She's put 'yes'. Well he can't! I've asked her about it, and she says that he can make toast! Surely that doesn't constitute making a meal? Can he cope with dressing appropriatly, changing his clothes, etc...again, she's put yes. So explain then, why, when I did the washing last week, there was seven pairs of Mums pants, and only one of Dads? He *thinks* he put a clean pair on every day. Where are they all then, unless he's wearing then all on top of each other. :eek:

    I've spoken to her this evening about the answers she's put. She says that she doesn't want to make Dad sound stupid, (or unhygenic! ) I've explained to her, time and time again, that she mustn't be embarrassed about Dads dementia, but she tries to 'cover up' for him. Why?

    She cannot see that unless she answers honestly, then they can't get an accurate picture of the situation, and this, in turn, may lead to Dad not receiving the appropriate treatment. I'm thinking of writing a letter to send to the consultant along with Mums completed forms, explaining my concerns over her answers. This wouldn't be overstepping the mark, would it?

    Sorry if this is a bit of a rant. I feel frustrated that we wait for these appointments to come, we have a list of things we are going to bring up and ask, and then when it comes to it, Mum suddenly pretends that everything is just fine! And it's not!

    Thanks for listening, people.

  2. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Hi JKS
    Quote JKS
    I can't believe the answers she's put!

    This is a stage that we carers go through,cannot admit that there is anything wrong.
    I recall being asked similar questions,"does your wife cook the meal"?
    My answer was "we prepare it betwwen us "
    I made excuses and covered up for a long time then I relised that we would not get the help we needed unless I told the honest cold truth.
    So Mum is not unusual.
    I would take the bull by the horns and contact the consultant,he/she may talk to you, failing that do as you say and write to them.
    Don t be too hard on Mum it's loyalty and love that causes her to be as she is.
    I do hope this helps you ,let us know how you get on
    Best Wishes
    Norman :)
  3. jks

    jks Registered User

    Jul 2, 2005
    West Yorkshire
    Hi Norman. Thanks for your reply.

    I'm sure you're right - it is Mums love for Dad that makes her act like will be their 48th Wedding Aniversary in a couple of months.

    I won't mention it again to her, I don't think she will ever really come to terms with what Dad has. She also seems to harbour the opinion that if he would only try harder, then he would be much improved. She is 80, and a stroke last year has changed her ability to understand some things, I think.

    Thanks for listening to me.

  4. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Hi jks, I went through this stage of denial with my Mum. I kept making excuses for the things she did/did not do etc. Thats what your Mum is doing and its like Norm says. Its because she loves him that she can't accept things being "not right" with him. Thinking of you, love She. XX
  5. connie

    connie Registered User

    Mar 7, 2004
    Hello, I find that I can only tell the consultant the hard facts about Lionel's behaviour when I speak with him independantly. Last week Lionel was being asked all sorts of questions, one of which was" do you ever imagine things which turn out not to be true"?

    "Oh no, replies dear Lionel, and I am sat there thinking how can I contradict him.
    As we had so many other issues to discuss I did not request 5 minutes alone.
    It is all out of love, and respect, and compassion, but somehow I would not have it any other way. Connie
  6. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    The last time we saw the psychiatrist I actually had to ask to see her alone, as I find it very difficult telling her in front of my husband about his behaviour. If I say he is very down, negative, and is obsessed with talking about Northern Australia and the dustbins not surprisingly he gets upset and denies everything. I think it is a pity a private consultation with a carer is not an automatic part of every consultation.
  7. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Good suggestion! How can we tell it how it is in front of the person concerned without it causing problems?
  8. twink

    twink Registered User

    Oct 28, 2005
    Cambridgeshire UK
    what dementia

    I've always been very uncomfortable talking to the GP or the psychiatrist when my husband is there too so I type out a page or three of the things I want them to know and hand it in when we get there, I guess I should really post it to them a few days before we have the appointment. I keep my diary and type out all the things that aren't 'usual behaviour' so hopefully the doctor would have seen it before we get there.

    I had a letter this morning from the DWP, we have been refused the middle rate DLA. I can't believe it, we sent the forms in last October and I've had to chase them about it and now they've said no. He has rheumatoid arthritis and alzheimer's and he is on the low rate. The support worker filled in the form so she knew better what to say than I.

    A Bad Tempered Twink/Sue

    LISA YOUNG Registered User

    Feb 1, 2005

    Hya, I understand what you are going through and how much it hurts, when you are doing your best to move forward and get the best treatment you can. My Dad was exactly the same about my Mum, he couldn't get the words out which critised my Mum in any way.
    My sister and myself spoke to the consultant independantly, explaining things were not quite as rosie as my Dad made out. We told my Dad what we had done and he was relieved we had taken it out of his hands.
    This is going back about 12 months now. If my Dad struggles now, I tell him to take himself out of the picture and then tell me what my Mum can and can't do. Without him, my Mum would struggle with most day to day things.
    I hope you manage to sort things out.
  10. twink

    twink Registered User

    Oct 28, 2005
    Cambridgeshire UK

    Hi Lisa,

    Thanks. It can be very awkward, we live 70 miles away from our kids so it's just me and him and he insists on going everywhere with me and me going everywhere with him so I don't get much chance to tell anyone how it really is. That's why I write it down and hand it over like passing a note in class! The psychiatrist we usually see, or have seen twice anyway, keeps going on holiday and the last one we saw in January never said to make another appointment, the Social Services aren't involved and the CPN has been once before he was actually diagnosed and that was it. I feel a bit lost as to what happens next, am I supposed to carry on myself or what. The support worker said if you haven't got an appointment through in 6 months time, ring the hospital and get one. I feel nothing is happening to help but then am I expecting help when I can take care of him myself for now. He's 55. I ring the support worker when I have a question and don't know who else to ask and she is wonderful.

    I've rung the DWP to ask for an explanation why they have refused the middle rate DLA. He's on low rate because of rheumatoid arthritis. I filled in all the necessary forms last October informing them that he now has alzheimer's. The girl did a review over the phone but was asking me about the RA, not about his alzheimer's so I've spoken to the support worker again and she is going to write them a letter supporting what I have said and telling them about the AD.

    They just make it harderand more complicated than everything already is don't they?! I filled in all the forms for the Enduring Power of Attorney months ago and haven't heard from them either but I don't know how long they usually take.

  11. Lynne

    Lynne Registered User

    Jun 3, 2005
    #11 Lynne, Feb 20, 2006
    Last edited: Feb 20, 2006
    JKS, you and your Mum are BOTH trying to do your best for your Dad, as you each see it.
    She's looking out for him, making excuses for him, and will do everything she can to avoid him being 'put in a home' as she probably sees it. And of course, she cannot bear the thought of living alone without him, with him living elsewhere, being looked after by 'strangers'.
    You have a totally different take on it; you have them both to consider, you have a more realistic knowledge of dementia & what it's going to bring. It's mainly a generation thing, and both attitudes are born of love for your Dad. Do try to keep that in mind, however frustrated you get.

    Your idea of writing a letter to the consultant to go with your Mum's answers on the form seems good to me. Try to keep it factual and reasonably unemotional. I'm sure doctors & consultants are aware of the 'protective' way partners tailor the information they feed back, but they are not mind readers and your input may help in an assessment of his needs. You could even ask for an appointment to meet him/her, but that may not be possible. You can only do what you can do.

    Best wishes

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