Very worried with no support!!

Discussion in 'Welcome and how to use Talking Point' started by Arobe1, Jul 12, 2018.

  1. Arobe1

    Arobe1 New member

    Jul 12, 2018
    2
    Hi, I’ve signed up here as I’m worried, scared and need advice. I’m an only child with no immediate family my Mum is 77, my Dad died 12 months ago last week!! I’ve been concerned about my Mum for a few years, my Dad was diagnosed with cancer last April and we cared for him at home. My Mums memory was put on the back burner the GP was aware ,timing etc was not great. Over the past 12 months my Mum was diagnosed with AF one week after he died, blue lighted to A&E, November had a UTI and ended up in hospital for 2 weeks the infection was mild but the agitated delirium kept her in, this was hugely stressful, however as soon as she was home a good recovery was made. 3 weeks ago she had a further UTI which I was quick to get sorted as I did not want a repeat of November’s hospital stay. I knew something was wrong as she was having vivid hallucinations, delusions heightened, and my Dad was back in the house!! She is clear of UTI but I think she is sundowning as I get very odd messages and so do other members of the family, I do have a memory test booked, she adamantly refuses these but I have booked it along with her B12 jab. I’ve spoken to GP who feels it’s not her meds or water infection but probably cognitive related, I’m worried sick she is alone at home I cannot stay over due my young family, I don’t know how to tackle her when she is explaining her delusions, and it’s so upsetting when my Dad is involved, I have to say he’s not here because he’s died,she won’t go out, this week she has made all sorts of excuses such as not well, in bed sick, but when I go round she is well but exhausted, probably because she is up half the night. She does have wander alarms and she can’t walk far. Her logic is wayward, concept of time day non existent which proves so problematic with her meds, I have to go round daily. any help from social services will be refused point blank. Once a diagnosis is made what sort of support is available, any advice from people who have been through the same would be so welcome.
     
  2. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    993
    Hi @Arobe1 I don't know really because I have not had any help with dad but it sounds like you are going to need help soon because you can't do it all yourself.

    I think you need to start with an assessment for your mum and yourself with the social services. You need to make clear that you have limited time available or you will slowly be swamped as I and many others have.

    Hopefully you will get more repllies soon from others that know more than me.
     
  3. karaokePete

    karaokePete Volunteer Host

    Jul 23, 2017
    3,215
    Male
    Cyprus
    Hello @Arobe1, welcome to TP. I hope you find the forum a friendly, informative and supportive place.

    With so much happening it is no surprise that you are very worried but you have come to the right place so do take a good look around the site and keep posting.

    May I try to assist with a few things. Firstly, in relation to communicating with your Mum, there is a very good thread that contains lots of hints and can be found with this link https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/ . It's a good idea not to remind someone of a death as that can cause them to relive it every time as they may not ever remember that it's happened.

    Next, you can do a post code search for support services in your/your Mum's area by following this link https://www.alzheimers.org.uk/find-support-near-you

    Next, you can get a lot of info from the AS Publications by following this link https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

    Next, would it be possible to collude with the GP about SS. Sometimes the older generation will do what the doctor orders, even if it's the same thing they refuse to others.

    Finally, if you need further help, just ask away or even talk to the experts on the help line, details as follows

    National Dementia Helpline
    0300 222 11 22
    Our helpline advisers are here for you.
    Helpline opening hours:
    Monday to Wednesday 9am – 8pm
    Thursday and Friday 9am – 5pm
    Saturday and Sunday 10am – 4pm

    I hope some, or all, of this is of help to you.
     
  4. Arobe1

    Arobe1 New member

    Jul 12, 2018
    2
    Thanks very much for your kind replies, I’ve read the links a and will try and tackle sensitive questions in a different way. Hoping today is a better one.
     
  5. kindred

    kindred Registered User

    Apr 8, 2018
    1,612
    Sweetheart, good to hear from you. When you get a diagnosis and the SS get involved, please do stress that there is a tight limit to the support you can give because you have a young family. Please set limits and be very very firm. This will help to protect you and your young family. Hope you have a better day today. Kindred xx
     
  6. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    730
    Female
    South of the Border
    It may not be in your nature to be very firm with people like SS - but, believe us who have gone along this path... for the sake of yourself and your little family. You HAVE to really stick to your guns and be forceful in the fact that you cannot do more caring than is practical or your children will suffer.

    I do not want to frighten you, but I refused to be my partner's carer, and his children also said I should not be ( I have been a carer before, now almost 70, and felt I did not have it in me to do it all again) We thought that something would be resolved - but our pleas were ignored and now 18 months later I am his carer full time 24/7 - he has complex medical issues as well as dementia.

    I have lost my career, self esteem, and am exhausted. I only say this to enforce that you must make the situation with Mum, how YOU need it to be, not how SS want it to be.

    Very good luck
     
  7. mumsgone

    mumsgone Registered User

    Dec 23, 2015
    340
    Hi Arobe 1 I agree with others stand your ground with ss. When mum has full diagnosis you will be able to claim attendance allowance for her and maybe get a carer going in if she will accept this. I agree with others re not saying that your dad has died as to your mum this is the first time she thinks she has heard this. I had similar problem with my mum after her husband died and care staff kept telling her then they kept saying she was depressed. I had to put them straight and tell them to say he was at work or had just gone to the shops etc ! we are all here for you and will give help and support when you need it. xx
     

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