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. jojob71

    jojob71 Registered User

    Jun 12, 2015
    4
    Hello all

    My mum is 70 years old and started showing signs of dementia last June.
    Within four months she was put on medication for early Alzheimer's onset.

    In March this year my mum was hearing voices and thinking people were in her flat with her. She thought she was in a shared house and they were trying to evict her. She was put into hospital for a month and then moved into a block of flats with carers. This didn't work. She phoned me daily, four or five times a day, to say that people were talking about her and stealing things from her flat.

    Last week she went missing from her home. The police found her seven miles away in her nightie. She had walked for miles. We had a gps which we put in her bag because this wasn't the first time she had gone missing, but my mum had noticed this and taken it out of her bag. She always says that she is trying to walk to my house. I took her out of her flat two weeks ago and cared for her at my house for four days because she was threatening to leave. I was shocked that this wasn't my mum anymore. She followed me around the whole time. Whenever there was a movement in the night, my mum was knocking on my bedroom door to ask if it was morning. Is it normal to forget the time of day?

    When the police found my mum, they took her into temporary emergency respite care. The care home they have put her in is disgusting and does not cater for mental illness. They have put her in a shared room next to the front door. Every time a visitor comes to the home, she has her bags packed and trying to 'tail gate' out of the door. We are looking for a permanent placement now somewhere safe.

    I know this is a long-winded story but it would be lovely to hear whether other peoples' parents and loved ones have experienced delusions, hallucinations and feelings of wanting to escape because I have never associated these symptoms with Alzheimer's before. My mum still knows who I am. She's a bit confused and forgetful with other names but remembers as soon as I prompt her. She has also started to become incontinent. She's a proud woman so is hiding her underwear in her bag and under the bed so that no-one notices, but she tells me so that she doesn't get told off by the carers.

    I am looking for a permanent care home for her now but don't know whether it will hurt her to be living with people who are further on their Alzheimer's illness. Can people with different stages of Alzheimer's relate to each other? Will she make friends or is every day a new day? I cry myself to sleep at night because my mum isn't the same person she was a year ago. I never thought to ask for help or speak to anyone because I think it's my mum who is suffering not me. Now I'm at the point where I think I need to speak to people who are or have been in the same situation as me.

    Any help or advice would be appreciated.
    Sorry for the long post.
    Jo
     
  2. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,056
    GLASGOW
    My Mum has been hearing voices, music and various banging noises etc for many years now. It was the first symptom of her vascular dementia. She is now in a care home as she also thought that other people were in her house.

    As for relating to other dementia patients? My mum has no awareness that she has dementia most of the time and does feel sorry for others who she thinks are worse than her. I dont think it bothers her though and she likes the care home. Most of the time she thinks she is on holiday and is in a hotel with nurses in it as staff. I hope you get a solution soon for your Mum. Try to to worry about what might happen and just look at things as they face you. Most of the things I worried about linked to Mum going into care never happened.

    Keep posting as there are so many people here to offer support and advice.
     
  3. canary

    canary Registered User

    Feb 25, 2014
    10,569
    Female
    South coast
    Hello jojob and welcome to TP
    My mum has Alzheimers and is in a care home too.
    Like your mum she thought there were other people in her house who were stealing things. She thought that she lived under a school and the children made a terrible racket going up and down the stairs although in reality she lived in a bungalow.
    She stopped doing anything for herself which became very difficult as she refused carers coming in as she thought there was nothing wrong with her and honestly believed that she was doing everything herself. She also started walking outside at night wearing only her nighty. She still point blank refused any help and eventually she had a TIA and was taken into hospital. From there she went into a Care Home and has been there ever since.

    All of the things that you describe - delusions, accusations of stealing, losing the ability to know the difference between night and day, not wearing appropriate clothing, incontinence, going out and getting lost and above all - not understanding that there is a problem are all normal with dementia. Until you have experience of it most people think it is just memory problems, but, as you have discovered, it is not. It is very hard to come to terms with and it is not just the person with dementia that is affected.

    Mum is now settled in her CH and has made friends. I dont honestly think it makes any difference if there are people around who are further along the dementia path - mum doesnt understand that they all have dementia. A lot of the time she thinks that she is living in her own home.

    I agree with quilty, dont worry about what might happen - everyones dementia pathway is different and some things may never happen.
    Go round and look at other care homes. Dont worry if they are a bit scruffy, its the attitude of the carers and the quality of the care that is important. You will need to find a dementia unit that is locked, though, to make sure that your mum is kept safe and doesnt go walkabout.
     
  4. Jenn

    Jenn Registered User

    Feb 24, 2009
    50
    Leeds
    Your poor Mum, and poor you too. I think maybe this is the worst stage of the disease for the sufferer because they have an awareness of what is happening to them as your Mum obviously does, so awful for her to be conscious of her own incontinence too.
    My Mum is in a care home and it is really very nice, activities and things going on, a pleasant room with its own toilet. I think if you have a good hunt around you'll find somewhere friendly, they say be guided by the smell (or lack of it), somewhere homely where the food is of good quality (I think if they serve up nicely cooked home made food then the home has to be reasonably good!)
    My Mum has had hallucinations too, not exactly bad ones as they're not frightening - like your Mum people stealing from her, in her case little boys sneaking into her room and she always used to see cats too (she's very fond of cats). I think its common with dementia, as is seeing people who have long ago died, though I know everyone's experience of dementia is different.
    Hopefully this will be a transition and you can get her settled somewhere nice, and it will be a relief. Good luck :)
     
  5. Roses40

    Roses40 Registered User

    Jan 25, 2015
    473
    manchester
    I really struggled with how to react to my mam or dad when they related a situation that I knew wasn't real, in my world. The illogic thinking, hallucinations were very real to them but not to me. Then I read the compassionate communication link here on TP and I was able to adapt my way of thinking to fit in to their reality. Can't change them but can change how I react to the situation. Pls do the link someone pls. Love Rose x
     
  6. canary

    canary Registered User

    Feb 25, 2014
    10,569
    Female
    South coast
    Here you go roses/jojob

    http://forum.alzheimers.org.uk/show...ionate-Communication-with-the-Memory-Impaired
     
  7. jojob71

    jojob71 Registered User

    Jun 12, 2015
    4
    Thank you

    Thanks for all of your replies.
    I thought I would post an update on here.
    My mum was finally diagnosed with dementia with lewy bodies a few weeks after my post. The psychiatrist changed her meds and she moved into full time residential care. She had a bad UTI which wasn't helping with her delusions.
    She seems to now have settled. She still has her moments but they are controlled.

    It was her birthday last weekend and we took her to see a musical. She was agitated to start with but then was singing all of the words to her favourite Whitney songs! We took her for a meal afterwards and she had already forgotten where she had been but apparently told everyone at the home about it the next day. In the restaurant my mum told me that the people at the next table lived in her care home and that they were trying to evict her. I told her not to worry about it and to just enjoy her night. I've learned not to argue with her when she says something strange. It's difficult to bite your tongue sometimes but arguing with her would just confuse her. I'm on a massive learning curve!

    Dementia is a nasty illness, but I really do think that you have to just adapt to your loved one's state of mind. We all have off days and unfortunately my mum's off days are more frequent than her good ones. But she is my mum and always will be.

    Thankyou so much for this forum. It has really helped x
     

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