1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. sammyseal

    sammyseal Registered User

    Jul 12, 2015
    7
    Hi everyone

    I've been lurking for a couple of weeks but I've plucked up the courage to post after a particular part of my Mum's AD journey really upset me today. Its a small thing compared to what some of you are going through, but I think its something that other people dealing with dementia can understand so I want to put it out there.

    My Mum is 80 was diagnosed AD a couple of weeks ago by a consultant neurologist. I organised the referral as she was having a lot of falls and they couldn't pinpoint the source. We are now waiting for a memory clinic appointment on 24th. Until the diagnosis, my Dad (74) was in denial, but now we are all trying to accept it, he is being proactive with arranging POA and thinking about downsizing from their rather large house. Mum remains firmly in denial and thinks we are all being horrible to her and "trying to make her think she is going mad".

    I'm an old only child with a 9 year old daughter. I live very close to my parents and we have always seen them 5 or 6 times a week, but my daughter is understandably scared of the changes in her nanny so I've tried to cut this down to 3-4 times a week until she can get used to the "new normal". I still phone my Mum every day in the evening, but the conversations are increasingly difficult. She won't let me arrange our get togethers with my Dad because she'd feel undermined somehow - I can't even speak to my Dad on the phone without her insisting its on loud speaker so that we "can't talk about her behind her back" (we just speak while she's napping instead).

    So, today is my wedding anniversary and I received a card from my parents - it was the first time in my 38 years that Mum signed a card with their names instead of "Mum and Dad". Dad says she wasn't sure who the card was for as she was writing it no matter how many times he reminded her. I've found that the most difficult thing to deal with so far.

    We haven't had the closest relationship for the last few years, despite being really close when I was younger, but I now feel that although she is still there, I've already lost my Mum.

    I'm so glad to have found this forum, and sorry for the long, rambling post...
     
  2. Patricia Alice

    Patricia Alice Registered User

    Mar 2, 2015
    179
    Hi Sammyseal,

    Welcome and you have now got your first post out of the way.

    I hope you enjoy your anniversary.

    I am sure you will get lots of posts under your belt over the coming weeks.

    I know joining talking point for me has been invaluable and lots of sound advice given, or if you just need to let off some steam

    Best wishes
     
  3. Tears Falling

    Tears Falling Registered User

    Jul 8, 2013
    637
    Congrats on your wedding anniversary that's fantastic.

    My mum use to speak about my dad and say dad. She now speaks to me about him using his name. I often refer to him by his name when we chat as if she is comfortable then it makes sense to not correct her and add to her confusion. I too have covert conversation with my dad as we can't talk in front of her or on the phone if she is around.

    It is a shock as some of the changes start to come in but I try to go with the flow to limit distress to both of my parents.
     
  4. Kjn

    Kjn Registered User

    Jul 27, 2013
    5,835
    Welcome to TP, my dad (mixed dem) refers to my mum as her name now or 'my supervisor':rolleyes:
    Dad listens in when mum talks to me on phone , see what she is saying , wondering who it is but is fine when knows it's me .

    You'll soon settle in here, good luck .
    Ps happy anniversary
     
  5. Tin

    Tin Registered User

    May 18, 2014
    4,826
    UK
    Hello and welcome to tp. The smaller changes in my mum had the biggest impact on me and when she first moved in with me there seemed to be a lot of these, helping her to sign birthday cards, cheques etc. Telephone conversations with the rest of the family became very difficult for me, they naturally wanted to know how she was and their conversations with mum were so short and upsetting for them, It was and still is difficult to fill them in on how things are going over the phone. We have had far more success with Skype calls. Mum really enjoys the face to face communication that Skype offers.
     
  6. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,783
    Salford
    Hi Sammy, welcome to TP
    Dealing with someone in denial is quite difficult I do it every day, tell my wife she has AZ and likely as not you'll get a very aggressive reply (or a slap).
    I think you and your dad have to accept the situation for what it is and if that means "going behind her back" then so be it, I'm sure everything you do will be in her best long term interests much as telling your 9 year old daughter little lies to get her to eat her 5 a day or whatever she needs to be doing but doesn't want to.
    If you have had a difficult relationship in the past this will really put it to the test, but your dad has the right idea, get the POA sorted and downsize, looking after someone with AZ is quite challenging without having a bit house to clean and a garden to manage on top. I wish I'd done it ages ago as now my concern is if we now do move coping with the change might be harder for my wife than looking after a 3 bed semi is for me.
    In her world you and you're dad are the ones who are wrong and nothing you can say or do will change that, it's to her the reality I wouldn't try and fight it.
    Happy anniversary BTW
    K
     
  7. sammyseal

    sammyseal Registered User

    Jul 12, 2015
    7
    Thank you all for the welcome and your comments.

    I spoke to my Dad today and told him about this forum in the hope that he will join too - I think it could be a haven for him as he tech-savvy (unlike Mum).

    She had a bad today today and he was glad to have a chance to get it off his chest when I went round there. At the moment there doesn't seem to be a particular time of day that is better or worse and it can change from minute to minute whether she's totally confused by everything or relatively lucid...

    I am so glad to have found this forum - we are heading away with Mum and Dad for a long weekend on Thursday and I have a feeling its going to be a bit of a trial for all of us. Trying to stay positive and plan some fun times too though :)
     
  8. Tears Falling

    Tears Falling Registered User

    Jul 8, 2013
    637
    Hope you have a good weekend. Plan to go with the flow and hopefully the weekend will be enjoyable
     
  9. theunknown

    theunknown Registered User

    Apr 17, 2015
    325
    Hi sammy. If your dad joined the forum I think he'd find it very helpful. I'm so glad I found it when I really needed it. It shows how many are going through the same horrible experiences, so makes me feel far less alone than I did. It provides support, and also there's a lot of advice available when it's needed.
     

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