1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

    Sam, our Knowledge Officer (Legal and Welfare Rights) is our expert on this topic. She will be here to answer your questions on Wednesday 26 June between 3:30 - 4:30 pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

Dealing with watching the Illness

Discussion in 'Younger people with dementia and their carers' started by Loodles1995, Aug 27, 2015.

  1. Loodles1995

    Loodles1995 Registered User

    Jul 17, 2015
    12
    #1 Loodles1995, Aug 27, 2015
    Last edited: Aug 27, 2015
    Hi :)
    So I don't normally post to anything but I feel that pushing myself could really help me deal with everything going on.
    My mom was diagnosed with frontotemporal dementia at the age of 46 in 2013. I was 17 at the time and to be told your mother has dementia was just heart breaking. As a family we decided it was time for my mom to go to the doctors when things started going down hill. My grandfather had the same disease and so when the symptoms that started appearing in my mom, we had some idea of what maybe going on.
    My mother was very high in her field. She was an expert and got to travel around the world giving talks and presentations and recieving awards. She was a scientist and throughout growing up my mom was completely commited to her job.
    My mom got made redundant a few years ago because of no funding (even though we now suspect it may have something to do with her illness and forgetting things) and after working in that job for over 20 years she was gutted. She found a few other jobs but the final straw came when she was let go from one for making inapproriate comments to other members of staff.
    My mom has always been an outgoing person but she was always professional and along with forgetting things, this really worried us as my grandad used to get in trouble for saying things not publically acceptable.
    I went with my mother to the doctors and she was diagnosed after scans and tests. Even though we as a family could see what was going on, it was still a total shock to the system and unexpected. We all had tried to deny things but I couldn't take seeing my mom like this. 2 years later now and things are progressing alot faster than I ever anticipated. In my mind at the time, it would be years before things started getting more serious and yet I feel like I am sat here watching her decline. There is no treatment at all available and she sees a nurse every 3- 6 weeks to monitor her condition.
    I cannot help but feel useless. I want more than anything to stop what is happening to her. My grandad had no idea as he was later on, but my mom knows. My mom has seen my grandads decline and she is heart broken too. She is starting to not realise more now as time goes on, which may be easier for her to cope with but it is heart breaking to watch. As a family, we have to monitor her for her safety, have had equipment installed to help keep her safe, do housework, make sure there is someone with her, make sure she washes and has clean clothes etc. I have no issue with doing these things for my mom. I love her to bits and I would do anything for her, but at the same time I wish I didn't have to. Not because I don't want to, but because I don't want to see her ill.
    Sometimes I look at her and I have to leave the room. I feel like my mom is there but not there at the same time. I sometimes can't look at her eyes either. It sounds horrible but when I look it's like she is not there and I can't deal with losing her. The fact that things will only get worse from here is something I try not to think about, but it is always in the back of my mind. It feels like a ticking clock and every second that goes is taking her from me.
    I spend time with her everyday, I take her out walking, try to make her eat her vegetables (all things recommended by the doctor) but then I still feel useless. I don't feel like I am helping her.
    My mom is still aware of things alot of the time, it just seems like more and more she will have 'space outs' and I can only imagine how frustrating it is for her. I want to help but I don't know what to do.
    I have always wanted to go to university and my family (including my mom) have always made sure I get what I can out of my life and education. Next month, I am moving away to study at Uni and I am very excited to learn more and become even more independent. However, there is something in my head that has been upsetting me for ages now and that is that I can't stand the thought of leaving her.
    I don't want to miss out on my time with her. I don't want to lose her when I am gone. I don't want to leave my dad and brother having to deal. I feel guilty.
    I spoke to my mom and she said she would not be able to stand the thought of me not doing something for myself because of her. I understand her point completely but at the same time I'm scared. I can travel home and visit her when I can, I can skype, I can send letters, I can ring, but I have this horrible thought that she will forget me. I know that the likelyhood of this happening is not alot and compared to where her illness could be she is no where near, however I am terrified I will miss out on her.
    Sorry for the long post! I suppose every worry that had been building just came out at once whilst I was writing! I love my mom and I just wish I could do something more.
    I know she will be okay, and my dad and brother will look after her but I just can't shake this worry. Any advice would be beyond appreciated in any area :) Thank you for any support.
     
  2. kingybell

    kingybell Registered User

    Feb 3, 2015
    115
    Aw sweetheart I read your post and cried. I really feel for you and your family and know it's going to be a rocky road ahead. You must live your life and go on to do wonderful things at university.
    You can Skype and call all the time and also see your mum as often as money and distance will allow.
    She may in the future forget your name and face but will have a strong emotional connection to you that will not disappear. She may not even know why she has it but it will be there.

    Please don't put your life on hold as it will make you angry.
    The only redeeming thing about dementia is you can plan and you know what is going to happen which can't be said of all illnesses.

    Good luck at uni and make your mum proud!
     
  3. Loodles1995

    Loodles1995 Registered User

    Jul 17, 2015
    12
    Thank you for your kind words. They have really helped me. I have never really said these things outloud (or typed) so to see your reply is refreshing. The thought that she will still have a connection with me is beautiful. My biggest fear is that she will not feel anything towards me but your words have given me hope.
    Thank you so much
    I hope to make her proud! :)
     
  4. kazb

    kazb Registered User

    Aug 1, 2015
    71
    I also have alzheimers and i am at present a nurse at a university.
    I have seen lots of students who have left loved ones at home who have disabilities/illness to come to university.
    They keep in touch in many ways and also go home as much as possible, please dont put your life on hold.
    Your mum would not be happy i am sure.
    If you do go to university, do let them know as you will get time off to go home and see mum and also if you need special leave/longer to do assignments etc, it will be the occupational health nurse(like me you will see), we are all understanding and will help you stay at uni and do your best.
    You will only be at university term time and honest this is not long.
    Leave Pictures around the house with your name on and who you are.
    Prompt cards help me.
    Good luck xxx
     
  5. Loodles1995

    Loodles1995 Registered User

    Jul 17, 2015
    12
    That is such wonderful advice. Thank you so much! I had no idea that the university could help me in such ways- that will be so useful and help put my mind at rest. I want to focus on my course but knowing that if I need to go home if something happens concerning my mom is an option that I can have will help me very much. The leaving photos around is a fantastic idea too thank you. I will get started on this straight away :)
    Thank you for your help and advice and I wish you all the best
     
  6. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    58,767
    Female
    Dundee
    #6 Izzy, Aug 27, 2015
    Last edited: Aug 27, 2015
    Just welcoming you to TP.

    How terribly sad for you, your mum and your family. I'm so glad you felt you could share your feelings here. Please keep posting as I'm sure you will find lots of help and support here.
     
  7. Loodles1995

    Loodles1995 Registered User

    Jul 17, 2015
    12
    Thank you. I am very glad I posted now :) I have recieved some lovely words and advice.
     
  8. kazb

    kazb Registered User

    Aug 1, 2015
    71
    Once you start university, make an appointment with DSO and the occupational health department.
    You can then always have someone at the university to speak with and they can always arrange any help/support and advice that you may need.
    You are also usually given a personal tutor who will be assigned to you as a student, its always good to have an informal chat with him/her, so they also know your/mums situation.
    You will be given all the help and support you need,which will be a very good thing for you.
    You can always contact me if you want/need to also.
    Universities are very good at supporting and helping students stay in education and will sign post you in the right direction if needs be.
     
  9. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    2,482
    Radcliffe on Trent
    I am another one saying go to university and do your best, that's the best gift you can give a parent to see you making a success of your own life and becoming an independent adult.

    You can still be close to your parents just like any other student leaving home for the first time.
     
  10. kazb

    kazb Registered User

    Aug 1, 2015
    71
    well said everyone xxxxx:)
     
  11. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    9,768
    Merseyside
    Please keep posting & tell us all about uni. Which uni are you going to?
     
  12. Bill Owen

    Bill Owen Registered User

    Feb 17, 2014
    182
    BRIDGEND
    hi im dislix so baer with me on this. My wife has( lewy body dementia. Love her very match) no what you going throuth . It is a ****ttttttttt. Illness. You mam is rigth. Sorry but when she gone you will have you life . She will only want you to do well for you self . So for you mam be strong go to uni so you can let her know how well you are doing she will know in her way.
     
  13. Loodles1995

    Loodles1995 Registered User

    Jul 17, 2015
    12
    Thank you for such lovely replys everyone! :) It is heart warming knowing that even though dementia is such a terrible disease it can really bring people closer.
    Thank you kazb! Your advice is brilliant. I will make sure I do what you have suggested :) It's great to know such thorough support is available.
    Thanks Pickles :) I really do hope to make them both proud. Some of your words are so close to what they have said- but it feels better hearing them from someone else because you feel like they are saying that to make you happy.
    I will cat! I can see now how useful these places can be for people. I only wish I had posted before :) And I am going to the University of Gloucestershire to do a BA in Fashion Design. I am very nervous but excited too.
    Thank you Bill. Your words are lovely and very helpful. Thank you for your support.

    Thanks to everyone on here. I wish everyone the best to you and your loved ones xxx
     
  14. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    9,768
    Merseyside
    Fashion design sounds fascinating. Do you have a speciality like shoes or is it just general?
     
  15. kingybell

    kingybell Registered User

    Feb 3, 2015
    115
    Fashion design? Now you've really got our interest.
    How about a catwalk show or some form of showcase for charity that will keep you focused.

    Good luck on being the next Stella Mcartney
     
  16. Loodles1995

    Loodles1995 Registered User

    Jul 17, 2015
    12
    Thanks Cat! It's more general but we get to learn a range from like womenswear, menswear, evening, sports etc. I am excited to learn more :)
    And that sounds like a brilliant idea Kingy!!! I was defintley trying to think of ways I could help even whilst at university and I think that would be a perfect way to use new skills and help people at the same time. It's definitley something I will mention to tutors and other students when I am there. I will keep everyone posted if I can sort something out. :)
     
  17. Beannie

    Beannie Registered User

    Aug 17, 2015
    94
    East Midlands
    Hi Loodles 1995,

    You are so young to be dealing with all this. I also think it is very of you brave to put your feelings out there. I am new to Talking Point and the replies and advice have just been amazing and so supportive. Your Mom sounds like a wonderful person and as a Mum myself I am sure she wants what is best for you. You must go out into the big wide world and seize every opportunity you can and experience University. The other replies have been so helpful and there will be support for you at Uni and you can keep in touch with your Mom and let her know how you are doing. Please continue to post here as we would love to know how you are getting on.

    Thinking of you.
     
  18. 1mindy

    1mindy Registered User

    Jul 21, 2015
    539
    Female
    Shropshire
    I was 27 when my mum was diagnosed,I always wish I had given her more support and more of my time. Sad to say I really didn't understand what she was going through. But for all my shortcomings I know she loved me and understood my failings.
    You sound wonderful to me. Have a clear understanding of your mums diagnosis and think of her needs. Hard as it may seem you going to university will be what she wanted and parents never want to hold their children back , I am certain that your dad and brother will stand up now and fill the gaps for the short time you are away.
    You must let the university know as they will then support you through your low times.
    Have a great time , make new friends and discover new things.You are only young once .
     
  19. 1mindy

    1mindy Registered User

    Jul 21, 2015
    539
    Female
    Shropshire
  20. Suzanna1969

    Suzanna1969 Registered User

    Mar 28, 2015
    346
    Essex
    Loodles honey I can only echo what the others have said and SCREAM you MUST go to university and do NOT sacrifice this wonderful opportunity.

    In addition t the others' wonderful suggestions, why not take some videos of the days out you have with your Mom and give her a compilation DVD before you go to play so she remembers you and you stay close to her?

    Also, when you get to uni, make some vids of your time there so she feels a part of your adventure. For example, take a camera round your Halls of Residence or your shared house (tidy up first for goodness' sake!) and introduce her to your friends, show her round the design studios and show her some of your work on the dummies etc. Send them to her by post (cos she will like that) all labelled with dates etc. That way she can share your adventure, even if she doesn't retain all the information, and hopefully relive some of HER time at university too.

    May I say how brave and wonderful you are? I am only 2 years younger than your dear Mom and I feel consumed with fear most days (my Mum has Vascular Dementia), honestly you are an inspiration and I know you will make your Mom very proud and will do right by her as well.


    I would have loved to go to uni and do fashion, I even looked at Gloucester! But I flunked my Foundation course because I was partying too much and not actually very disciplined at all. I am sure you are far too mature to mess up like I did! (And to be fair I wasn't actually that talented either!)
     

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