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Welcome to Talking Point - introduce yourself here

Discussion in 'Welcome and how to use Dementia Talking Point' started by Mark_W, Jan 17, 2018.

  1. Jinxie4567

    Jinxie4567 Registered User

    Feb 11, 2018
    15
     
  2. Jinxie4567

    Jinxie4567 Registered User

    Feb 11, 2018
    15
    Yes you're right we can only hope this agitation and anxiety gets reduced with medication no matter what the cause..." My mum has always been a worrier" I know I couldn't look after her at home as no matter how much I try to reassure her she still comes back to the same anxious state! I brought her home for Christmas and in a way it was a good thing as it made up my mind she needed 24/7 care. It's difficult because she looks the same but everything else is gone...
     
  3. #lovemymother

    #lovemymother New member

    Feb 11, 2018
    5
    Hello, I have just signed up today. My 78 year old mother was diagnosed with Alzheimers last week. I noticed she was getting confused and forgetful around 3 years ago and when we lost a little girl in our family 2 years ago I knew by watching my mum it wasn't just signs of getting old. It took months to get her to the doctor's, and missed a few appointments because she refused to go. Anyway i wrote 4 A4 pages of what had been happening and delivered to the doctor before our appointment. He was fantastic with mum and we were soon referred to the memory clinic.only mums health dived as she's a diabetic and had an infection so within 2 weeks she was seen by the mental health team and had a nurse. Quickly followed by a ct scan and 2 weeks later we got the results. To be honest it was a relief getting the results because I knew deep down. It's a upsetting time for mum as she dips in and out and forgets an awful lot but remembers a lot too. She thinks she can walk it off so we've had many times she's roamed around not in a fit state of mind, crying, no coat etc. Last time we rang the police at 5am. They were fantastic she is now registered on their data base. I know we have been extremely lucky so far in the help we've received. But it hurts like hell to see her like this, not only am I looking after mum I have a sister with mental health issues a brother who doesn't help he just wants waiting on. And here I am the youngest and feeling like I have the world on my shoulders :(
     
  4. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,077
    Yorkshire
    hello @#lovemymother
    a warm welcome to TP
    your mum is a fortunate woman to have you looking out for her
    sadly family members aren't always as helpful as maybe they could be, and it often falls to one person to take on the carer role
    you have a lot on your plate, so it's good that you are getting some support
    and I'm glad you've found TP as it's a community of folk who are generous in sharing their experience and offering sympathy and helpful suggestions
    so settle down with a cuppa, have a read around and start your own thread whenever you are ready
     
  5. steveb2018

    steveb2018 New member

    Feb 11, 2018
    2
    Male
    Good Evening All,
    My name is Steve. The reason I joined talking point, is that my Mom has been diagnosed with Dementia. This is an on going condition approximately 2 years old plus. This is my second round with this disease my dad was the first round.
    She is finally getting correct care. I went to visit her yesterday and it really scared the heck out of me. her rambling and disheveled look etc. It was a severe look at her mortality.
    She has also been Diagnosed with a UTI, she has other things but I wont waste time going into all the dirty details.
    Needless to say I am in need of someone to talk to about all of this . Well that's all I have
    Thanks for reading.
    Steve.
     
  6. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,077
    Yorkshire
    hello @steveb2018
    and welcome to TP
    I am so sorry to read of your mum's situation and of your dad also - so hard for you to be trying to cope so it's good that your mum is getting care
    TP is a safe and sympathetic community to come to to share your experiences, so post with anything that is on your mind - it helps to get stuff off your chest amongst folk who understand
    start a thread of your own and you'll find members will respond
     
  7. steveb2018

    steveb2018 New member

    Feb 11, 2018
    2
    Male
    Hello Shedrech,

    Thanks so much for the kind words. I will look around a little more then maybe later put words to screen with a thread of my own thanks again
     
  8. Hardtimes18

    Hardtimes18 New member

    Feb 11, 2018
    2
     
  9. Hardtimes18

    Hardtimes18 New member

    Feb 11, 2018
    2
    Hi Steve so sorry you have to go through all this twice seems really cruel. My mum has very recently been diagnosed, two weeks, and the decline since is really shocking. We don't think the medication is helping at all as she is agitated every day and don't know how to comfort her. I guess we're still looking for a magic pill that will stop all her odd and embarrassing behaviours. Still waiting on the post diagnostic team to get in touch. Can't believe this is early stages. Hope u can find some peace and comfort in the fact she is getting proper care.
    Take care
     
  10. #lovemymother

    #lovemymother New member

    Feb 11, 2018
    5
    Thank you shedrech, I'm still finding my way around on here and I already know I'll be on here lots. Mums nurse has certainly pointed me in the right direction for support.
     
  11. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,077
    Yorkshire
    hello @Hardtimes18
    and welcome to TP
    unfortunately not all meds suit or help all people, so it can be a case of trial an error to get the right meds, right combination, right dose and even right time of day to take the meds for best effect/fewer side effects
    do contact your mum's GP and consultant to let them know how the meds are, or aren't going - some do take some time to 'bed in'
    and jot down any concerns, observations and questions so you have a note of them for when you speak with the post diagnostic team (contact them if you think it's been too long)
    keep posting - maybe start your own thread ....
     
  12. Boxie.

    Boxie. New member

    Feb 11, 2018
    2
    Hi I am new to the group, we live in the south west & my partner was diagnosed with alzheimer's over a year ago, I first noticed little things around 2012 & things seem to have deteriorated quicker than I thought!
    Just a quick question how best to cope with the nightly distress/anxiety which she has no knowledge of.
    Many thanks.
     
  13. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,077
    Yorkshire
    hello @Boxie.
    and welcome to TP
    sorry to read that life is challenging for you both
    have you chatted with your wife's GP and consultant (if there is one) and let them know about the nighttime anxiety, which may well be 'sundowning' - there may be meds to help her settle (and I do mean that NOT to just knock her out - my dad had terrible anxiety of an evening and meds helped him be more content in himself)
    https://www.alzheimers.org.uk/info/20064/symptoms/87/behaviour_changes/8
    now you've found the site, do start your won thread and chat away with others about anything that's on your mind
     
  14. Normaleila

    Normaleila Registered User

    Jun 4, 2016
    687
    Hi nimue. I hope you're reading the posts on here and realising you're not alone. You can't keep on as you are - you must step back for the sake of your health and your family. It's the local authority and adult social services that have a duty of care. Remind them of that and tell them you'll be doing the minimum yourself because you're not well. It's the only way they'll get the help they need .
     
  15. Mrs MCS

    Mrs MCS New member

    Feb 12, 2018
    1
    Hi, I have just registered and hope to be able to contribute to the discussions though firstly I have some questions. My husband, 64, is going through the process of being diagnosed. We’ve been to the memory clinic where they gave me a very clear message that we are looking at semantic dementia. Husband can’t accept this yet. He had MRI last week and we have a follow up appointment mid April which seems a long time but that’s ok. My question is about how I can support him to be independent for as long as possible or at least feel that he’s independent. He has ‘lost’ most of his language for food which is a tad challenging to say the least. Are there any adult friendly flash cards around that could help him recognise everyday food and meals? I’ve already found this website a massive help and hope to continue finding information and support here. Thank you
     
  16. Tralouise

    Tralouise Registered User

    Nov 27, 2017
    25
    Female
    Where to start!! I'm new to this and feeling pretty desperate to be honest.

    My name is Tracy. 2 years ago I noticed some changes in Mums personality, aggression,,rude, confrontational, and said to my sister I'm sure mums getting dementia but everyone laughed it off. Last May mum was independent and full off life still travelling abroad on her own etc? Living alone and enjoying life. Then her brother died unexpectedly and Mum instantly started with horrific depression and anxiety. Her personality has changed beyond all recognition and she is now very child like. She's lost 3 stones and has been in a psychiatric unit 6 months. She's not safe to be left alone as she has no sense of danger, walks into the road, spills hot tea on herself. Wanders round the house when we take her home on visits, just wandering from room to room. Mum was loud and bolshy she's now as quiet as a mousse and never speaks. She has obsessions and goes on about them all day long, can't eat, can't wee, has no pulse. She's lost all empathy and regard for anyone else. We demanded a brain scan and the psyciatrist said it showed some vascular changes, some brain shrinkage, and all the changes were in the frontal lobe. When we suspected dementia before the scan we thought front lobal dementia as all her traits seemed to fit with that. The psyciatrist said he never diagnoses on a scan alone and wanted to observe mum further. Mum has declined and now has psychotic episodes / all the psyciatrist keeps saying is at the moment he wants to control her symptoms and a diagnosis is not important!!!!! Every week we tell him we need to know what's wrong with mum, he just says it's a possibility it's dementia going off the scan but he won't diagnose her yet. My mum has gone, it's her body but not my Mum. I'm a single parent with 2 children and mum has always been my rock and my best friend. We used to be on the phone around ten times a day. She's not rang us in 6 months. Before mum went into hospital we had her living with us. The mornings were dreadful she was so disorientated mornings, refused tablets, refused food, accused us of poisioning her to the point she was paralysed yet walking around!! As a family we're sure it's dementia but why are they taking so long to disgnose? We took her for denture fitting on Saturday and when I suggested she needs to try and chew something to see if she could eat with them in she nearly bit the dentists finger off! It was hilarious to be honest. She spits in the street and each week has some new obsession, we've had them all, she's dying off a serotonin overdose, she has kidney failure, the patients are set ups to spy on her, there are cameras in her room, social services are coming to tske my children away because I wasn't in time with her washing, the psyciatrist is not a real doctor. The list goes on and on. Mum was an old school nurse and midwife who just got on with it if she was ill, so all this behaviour is bizzare!! I've managed to get power off attourney but that left her agitated for days rambling on the hospital were taking her house!!! We're so worried, confused, scared, how can we make plans without a diagnosis? A nurse on the ward said the psyciatrist concerned is known for taking his time to disgnose! This has to be the most painful thing I have ever gone through in my life but the not knowing just adds to it!!!!! Any advice ????
     
  17. Tralouise

    Tralouise Registered User

    Nov 27, 2017
    25
    Female
    Oh and mums memory is good? In that she's as sharp as a button with stuff 20 years ago
     
  18. nitram

    nitram Registered User

    Apr 6, 2011
    19,090
    Male
    North Manchester
    Have a look at this explanation:

     
  19. Tralouise

    Tralouise Registered User

    Nov 27, 2017
    25
    Female
    Thank you, that's a really good analogy. Does anyone have any experience off why they don't diagnose on scan alone? Is all this. Standard practice? Taking so long to disgnose
     
  20. Lindiloo20

    Lindiloo20 New member

    Feb 12, 2018
    3
    Hi I'm Lynn from Belfast

    My mum moved to a dementia unit 4 months ago. She has had dementia officially for 2 years but plus 5 from previous diagnosed cognitive impairment. I have 2 young children ages 5 and 2 and on top of managing coming to terms with the illness and my own change of relationship with my mum, I'm absolutely devastated that my children won't get to know her amazing-ness. It's a real struggle and stress when I take them to see her and im struggling to find a balance to keep her with me and make sure my girls know their granny. Also would love to be able to protect my young kids from seeing others in the unit but I can't seem to manage to bring my mum out how I used to .
     
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