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.

New to all this and very scared.

Discussion in 'Recently diagnosed and early stages of dementia' started by shazvana, Nov 19, 2015.

  1. shazvana

    shazvana Registered User

    Nov 19, 2015
    5
    Brisbane, Australia
    Hi everybody:)
    I've been lurking for a little while and figured it was time to talk.
    I will be the full time carer for mainly my mum but dad too as he ages out, mum is currently 69, dad is 70.
    Mum has been physically unwell all my life (I'm 41), her biggest issue is Melanoma and severe osteo arthritis and while I can't spell the type of melanoma she has, sadly it's the one that will take her life eventually and it's a waiting game as to when this will occur. As I type this, we are waiting on results to see if it has spread to her organs and/or brain and sadly, my gut is telling me that we might not be dealing with early dementia but the Melanoma has now gone into her brain and this is what is happening to her of late.

    I live interstate from my parents but was moving in with them (myself, my husband and daughter) around next X-mas (2016) but this has changed and it has got me scared senseless.
    I have just come home from a trip to mums and my previous trip was exactly 6 months ago and the 2 trips previous to that trip were also at 6 month intervals. It was on my trip 18 months ago that I started to notice huge changes in mums memory and behavior but thought not much of it, then next trip she was worse and this trip, well, I have to admit, she has me very very scared and worried because she has gone down hill so much and so fast that it has blown my mind.
    Everybody around her (friends,dad, my brother, doctor etc) clearly see the changes in her memory and behavior too and express concern.

    The biggest problem (and frustrating problem I must admit) is, mum is in total denial that there is anything wrong and after spending days researching, I can see she is definitely one of those people who are in early/mid stages dementia and in denial about it.

    So, since coming home and speaking with my GP about what's going on and how much of a decline I can see in mum, he has suggested that if I can make the move to her sooner rather than later, it would be better as he feels that if I leave it until X-mas 2016, she could be in a very bad way and not know who I am at all etc and I would miss out on my last chance to be with my mum as I have always known her but the thing is, she is already a totally different person, so I have already missed some precious time because of her quick decline.

    I am also very concerned for dad as he is not coping too well with the "new" mum.
    So the decision has pretty much been made that my husband and I will sacrifice ourselves for the next year and I will move down to mum and dads very shorty after this X-mas (and I will have to take our daughter with us as well) so I can be there to start caring for mum and dad while mum is still sort of here.

    I have a lot of learning to do in order to help mum because her continual denial and BS stories as to why she can't remember things, why she left the hand brake off in the car, why she thinks she has taken her correct meds etc is driving me nuts already, so I know I must take a step back and change myself, not try and change her like I was doing until recently. I was trying because I did not recognize her symptoms as early dementia but I can now see that this is where she is. After a very lengthy chat with my GP and telling him every little thing she does, says etc, he believes she is in stage 3.

    I have spoken direct with mums GP also and he agrees but he will not push her to get assessed because he said it's up to your mum. This frustrates me no end because how am I going to get her to agree to be assessed when she is in total denial that there is anything wrong with her and if you do say anything to her she becomes slightly aggressive and gets very upset and then blames her medications but the meds she is on, do not usually cause these types of symptoms apparently.

    When I mentioned to her on the phone yesterday that I am looking at moving down after this X-mas, of course she asked why so soon but I couldn't tell her the truth because another one of her favorite sayings is "I'm ok, geez, you don't need to worry about me yet, I'm fine for at least another few years"
    Ha! no she is not! She barely does anything apart from sleep in bed or sleep on the couch because she is in so much physical pain and if she does get up to do something, she forgets many things and the situation ends in disaster and/or the situation is very dangerous and that is one of my big concerns, her safety and dads safety and that is my biggest motivation for wanting to go now.

    On this last trip I made, there were incidents where she took the wrong meds or took too many or too little and dad and I often found tablets dropped on the floor and if we ask her, she has no clue what they are or if she knew she dropped it or if she actually took it and it's becoming very dangerous for her because of some of the meds she takes.
    She gave dad the wrong meds (I have told him he must stop relying on mum to give him or get his meds for him because she simply can't do it correctly anymore and it's things like this that he finds hard because she has always done this stuff for him).
    She left items either on or off in house/car that could have been very dangerous if I had not checked, eating food that is well past used by date and could have made them both very sick, using incorrect chemicals for household jobs that she tried to do but quickly forgets and she actually never finishes them (on my first day there, I went to use the Spray & Wipe bottle to clean bench tops in kitchen and I asked mum if it was bleach instead because it spelt like bleach and bleached the bench, she said "No, of course not, I only just bought that new bottle at the supermarket yesterday" I soon discovered it was bleach and somehow she had filled the empty bottle up with bleach and I know she did not go to the supermarket the day before, I asked her if she knew why it would be bleach and her entire story changed and she blamed dad then blamed me but denied doing it herself or denied her story of buying it the day before at shops etc) and the list goes on and on and on, sadly.

    I always knew it was up to me to care for my parents when it came time but I never in my wildest dreams thought I would be dealing with mum having dementia, let alone going down so quick, I never realized it could happen like this.
    I know it might sound horrible but my GP said to me last week when I came home from mums, that it would be kinder on her if her cancer gets her first and that this is what I should pray for and I would have to say after all the research I have done and speaking with others, I agree with him and I hate myself for thinking thoughts like this, it seems so horrible.
    I have never in a time in my life wished I had a crystal ball so badly, I'm not too sure what I'm so scared of but all I know is, I'm scared pantless by moving down so soon and then being there 24/7 for the next umpteen years.
    I think part of it is my frustration that mum is in denial because I know I am the type of person who dislikes people who deny obvious things but it's a problem I have to sort out with in me, I know not to expect her to change this because I know it can be part of dementia and many sufferers are like this in the early stages.

    Anyway, I just wanted to say hi and tell my story and get it all off my chest, even though my husband is a total gem and very supportive, I still feel like I need to speak with others who have lived through what I suspect strongly that I will have to live through in the next how ever many years.
    Thanks for listening:)
     
  2. 2jays

    2jays Registered User

    Jun 4, 2010
    11,489
    West Midlands
    Hi shazvana
    Welcome to talking point. Sorry you have the need but glad you have found us.

    I know we have others from your part of the world. This forum seems to be mostly made up of people from the uk, but it doesn't matter where you live, similar problems rear their ugly heads wherever you live.

    My you have got a lot of emotions and situations running around haven't you.

    What a major step you are considering taking. Moving to live with your parents.

    I'm hoping others with a better way with words will be along soon to give you their thoughts on what you are considering. For my part, I really feel you should think long and hard about the decision to move, trying not to involve the guilt monster and too many emotions within your decision. I know, that's easy to type, but so hard to do xxx

    To care for someone with dementia who also has cancer and a young child that has moved away from its friends/school/parent is not going to be easy, and could be almost impossible to juggle. Dementia will eventually take over your whole life, leaving no time for others. That's the horror of dementia. It's all consuming.

    I feel that however much you have the need to be with your mum, your child is your priority and their security and needs should be thought of first as hard as that seems, because you of course want to do everything right and support everyone, especially your mum.

    I'm sorry I can't seem to get my words, it's silly o'clock here in England 06.49 at the time of writing :) hoping others, as I said, will be able to write more clearly with their thoughts as soon as they are awake :)

    I'm also hoping that someone from your part of the world can give you suggestions with regard to outside support your parents could be entitled to now. day clubs, carers visiting the home to help with personal care, give your dad some time out, those sorts of things, and if you do decided to move in with them, you will need these kinds of help to support you too.

    My heart goes out to you. It's such a difficult and emotional time for you to need to make these decisions xxx






    Sent from my iPhone using Talking Point
     
  3. marionq

    marionq Registered User

    Apr 24, 2013
    5,596
    Female
    Scotland
    I will deal just with the denial as I experience it every day. My advice would be to stop making an issue of it because it will drive you crazy and your mother will not be able to change it.

    My husband can be caught red handed in some foolish activity and if he can't outright deny it will immediately blame me often in the most bizarre and contrived way. This is the way dementia works. No amount of arguing, reminding, lecturing will alter this behaviour. Save your blood pressure for bigger things.
     
  4. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,282
    SW London
    It is probably not denial as such - denial implies that someone is aware, but won't admit it. Quite a number of people with dementia genuinely do not think there is anything wrong with them - my mother was one such. This is probably because their short term memory loss means that they can never remember that they can't remember anything (if that makes sense) or that they can no longer manage to do this or that.

    I agree that it's pointless to try to force the issue. You have enough on your plate anyway - good luck and do keep posting.
     
  5. shazvana

    shazvana Registered User

    Nov 19, 2015
    5
    Brisbane, Australia
    Thanks for the warm welcome everyone, I really appreciate it.

    2jays, your words are just fine, I fully understand where you are coming from. My daughter is 13 this X-mas day, she is fully aware of what is happening with Grandma and she is very keen to make this move, probably more so than us (my husband and I)
    We have sat her down an explained everything that we can, especially about what the future may hold and she is happy. The school we plan on putting her in is much better than where she is now, so she is also very happy about that and luckily, mum and dads place is a huge property where she can get out and escape into nature, animals etc.
    Yes, it is a huge huge move but I just can't see another alternative and I am the only one in the family who is capable of caring for her (and dad if he ever needs it too)
    I have tried to find support like this forum from people/places here in Australia but I couldn't seem to find anything decent. Yes, I would dearly love some "local" help to tell me what services are available, what ones are good/bad etc but if I can't find any "local" help from here then that's cool, I will source it myself and learn as I go:)
    Life is about to go down a whole new road that I never imagined, I know I am strong and I know it will be very very hard but is all I can do is hope for the best.

    Marionq & Witzens,
    Yes, the realty of her denial (or whatever we want to call it) has well and truly sunk in with me and I now see that I am just wasting my energy trying to change her ways, so I have given up (in a nice way)
    The last time I spoke with her about all this, she said some strange things, she said she knows she is the way I described but she refuses to admit it to anybody, she also said she knows she is this way but she doesn't feel fuzzy in the head, she doesn't feel forgetful etc.
    So this left me more frustrated I will admit because I was trying to get her to help herself and the people around her that love and care for her because I know all their friends are starting to pull away slightly because she is becoming harder to be around and they try and help but she gets nasty towards them or they are fed up with all the BS she tells them.
    I can really see how Dementia impacts every single person around the sufferer.

    After I posted yesterday afternoon (my time) my husband came home from work and announced that we can leave our home on New Years eve to start to drive to mums and he will have a week off work to help us settle before flying home again and leaving us there. Wow! that gave me a reality check I must admit!!
    I so badly want to and have to do this but I am just so scared but I suppose that is a natural feeling for anybody in my shoes and I would be worried about myself if I didn't feel this way.

    Thanks again to you all for your kind words.
     
  6. 2jays

    2jays Registered User

    Jun 4, 2010
    11,489
    West Midlands
    It sounds like you are going. I wish you a positive move.

    Keep on posting here for information that you want to know about, as there are some people on here from your country and if they know exactly what info you need, they may be able to help.

    Anyway, I don't think dealing with dementia where you live is any different to dealing with dementia here, just the support that's available :)

    xx


    Sent from my iPhone using Talking Point
     
  7. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    Hi there and welcome to TP where there is lots of support

    I agree with everyone, it really isn't denial, your mum thinks you are nuts even suggesting that she might have forgotten. My Mum never stopped thinking everyone else had had a turn for the worse!!! It was difficult in the beginning but in the end we just accepted that we were wrong and with acceptance came peace :)

    This is a rocky road and you and your family and your dad and mum will need all the support you can get. I expect you have carers organisation and my first step would be to join a local one and you will find out all sorts of helpful things and meet people who are really supportive and in the same position as you (and take your Dad along too if poss)

    This is a really useful leaflet and the earlier you see it the easier things get
    http://www.alz.org/greaterdallas/documents/CompassionateComm.pdf

    mine was on the fridge for 4 years much to my mother's amusement!!!!!!!!!!!!!!!!!!!!!!!!!

    good luck keep posting and we are all here to support each other so once again, welcome x
     
  8. Tin

    Tin Registered User

    May 18, 2014
    4,829
    UK
    You have our complete support and if you have any questions about anything, including your move, just reach out on here and ask away. Welcome to talking point.
     
  9. Lawson58

    Lawson58 Registered User

    Hi shazvana,

    Welcome to TP from Victoria, Australia.

    I don't think I am going to be much help to you as support and facilities vary from state to state here in Australia and at the moment we don't need much help from outside agencies so I am not familiar with what is available.

    However, once you are settled I would suggest that you contact Alzheimer's Australia as you will find that they will have numerous information leaflets and perhaps have sessions about various topics that may assist you. More importantly they have a helpline where you can talk to someone and I found that in the early stages pre-diagnosis that they were very helpful. They also have counsellors who can work on a one to one basis with you.

    You will also be able to apply for a carer's allowance which you do through Centrelink. You need to complete a form and have it endorsed by your mum's GP. The questions tend to have answers much like a multiple choice but I wrote all over the page and added a covering letter as well. Payments are made from the date of application and often they will refuse you the first time but you can appeal and from what you say, there shouldn't be a problem.

    You also need to work out Enduring Powers of Attorney for Medical and Financial and here in Victoria, I was able to download the forms from the government webpage. There were also instructions on how to complete the forms and there was no need to use a solicitor. Having a medical PofA will be very helpful in overcoming some difficulties with your mum's GP and you will find that if your mum requires hospitalization then it will be much easier to communicate with the doctors and nursing staff.

    Our hospital has a service that they call Hopital in the Home which provides basic nursing and that enables patients to return home earlier. OH recently had surgery and required an injection daily to compensate for his warfarin. So he only had 2 nights in hospital, a nurse came every day to give him his injection and assist with his catheter, and he was much happier at home where he could slip into his own routine and eat reasonable food.

    Other assistance may be available from the local council. Our local council provides varying levels of assistance and there are also carer groups at state and local areas who also can provide counselling.

    Federally, you can ask for an aged care assessment from the government but I have not had to do this yet but there is plenty of information available on their website.

    Things like day care groups will depend on what is available locally but I shouldn't think you will have too much trouble finding them..

    Denial seems to be part and parcel of dementia as so many people on TP have had the same experience. They (doctors, carers etc) tell us that dementia patients lose insight to their condition but I think other things like fear of what is happening to them plays a part in the early stages of this disease. I think some people lose more insight than others and when ordinary everyday things become scary and no longer appear the same, I think it would be a normal reaction to be afraid.

    And when it comes to memory, how do you know you have forgotten something if you can't remember it in the first place?

    I am glad that your daughter understands what is happening and that will be even more important as your mum's health deteriorates.

    If there is any other way I can help, send me a private message and I will do my best.
     
  10. shazvana

    shazvana Registered User

    Nov 19, 2015
    5
    Brisbane, Australia
    Exactly 2jays, dementia is dementia, no matter what part of the work you are in. Yes, I'm 99% sure we will leave our home on New Years eve and be at mum and dads on the 5th Jan. We must make the decision and stick to it due to so many things needing to be done in order for my daughter and I to make this huge move.

    fizzie, thanks for the link, that is very helpful. Yes, I have come to see that it is me who has to accept how mum is and not get stressed about her denial etc and just support her as she is and expect nothing really, so then if she gives something good then it's a good day I suppose:)

    Thank tin, this seems to be a great place for support and I think I will be here often.

    Isaac, wow! thanks very very much for all your advice, I will look into everything you told me. Thanks for the offer to PM you, I might just do that soon:)

    Well, I'm about to ring mum and tell them we are coming and we are about to book the boat. This is why we must make a firm decision to go because we have to book the boat asap because it's filling up quick and we don't get our preferred date booked then it really does stuff up our plans, especially of hubby driving down with us and having a bit of a holiday with us for the first week we are there.
     
  11. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,402
    Male
    Cornwall
    I think Witzend got it right , you must remember a person with dementia thinks what they did was correct it's very difficult to change yesterday my wife I thought called to me and asked if I wanted some toast I said yes please a few minutes later she came in with a piece of wedding cake obviously one of us was wrong not much point in arguing I was admen that it was toast sorry but that just one instance it does get worse some days
     
  12. shazvana

    shazvana Registered User

    Nov 19, 2015
    5
    Brisbane, Australia
    Yes, I know I must change my thinking about this denial idea, it is happening, I am getting there and I am quite proud of myself that just over the last few days I have changed a few key things in my behavior that I feel will help me and mum.
    The biggest thing I have changed is, I have stopped saying things like "Don't you remember me telling you X,Y Z mum" or "Do you recall X,Y,Z" or "Remember when ......." because I quickly noticed that if I say things like this and she doesn't remember, this is when she will make up her BS stories to make out like she did/does remember. So to put a stop to the BS stories, I figured I simply will not leave an opening for it to happen and this will help her and help me with my frustrations about all the BS she tells because she can't remember something.
    I've been watching some videos on YT and learning a lot from there as well as here. I am a huge believer in that knowledge is power and I am the type of person to gain as much as knowledge about something as I can and this makes me feel a lot calmer/happier about a situation.

    Well, I phoned my parents and told them that we will be arriving on the 4th Jan and they both had a freak attack:)
    I got a bit upset at their reaction and it was hard because I can not tell them (can't tell dad while mum is in ear shot and she was for the entire phone call) the true reason for my urgent arrival, so the excuses I did give, did not seem to urgent.
    Seeing things from their side, I can understand why they freaked out because the plan was always to move down at X-mas 2016, so to suddenly say to them I'm coming very soon with my daughter, was a shock and more so because my brother is moving down on the 10th Dec (he is actually driving down slowly as we speak) and if he does not find a home to rent quickly, there is a big chance we will all be under the one roof at once and that is what freaked them out, although I had been asking for over a week that if it turned out that way, would they be ok with it and they both said yes many many times, so that is why I got upset because they sort of indicated they were not happy about it but I based my plans on them being ok about it if it happened that way.
    It turned out ok in the end though and we sorted it out, especially after I explained that for my family to do this move is much bigger than my brother because he is not looking at this as permanent, he still talks that he might move back to Qld within 6 months or so but for us, this is it, once we are there, we are not going anywhere until mum and dad are no longer around and for us, we have not got the luxury of a tax payers income like my brother who lives off benefits and can move where ever and when ever he likes and know he will always have money coming into his pocket.
    So I explained to them that this is what we worked out to be the best way short and long term for my family because we have to take income/schooling etc into consideration and they finally understood where I was coming from.

    I really just wanted to spit out the true reason and say "I'm coming down now because mum is very obviously in early to mid stages dementia and before things get worse, I want to spend as much time as I can with the mum and I feel because mum has gone down hill so quick that she is becoming dangerous to herself and dad, so I feel an extra set of eyes and hands around is a very good thing and I want to give her granddaughter the same chance of being with the grandma she has always known but I couldn't say anything like this, so had to say other rot instead.

    So it's actually happening and I will admit, reality set in yesterday morning when we turned off our 8ft turtle tank and relocated our turtles to my close friend and then came home and cleaned the tank out. This tank is something we built 4 years ago and it was not ever going to be moved for many many years (due it's huge size because it's 8ft long, 3 ft high and 3 ft wide so it's a huge heavy tank) and when we got all our turtles, we knew it was for life and never ever thought about not having them in our life, so yer, it was a reality check once that tank was empty and my babies all gone.
    But hey, it's a new chapter of life and I am ok with this.

    Thanks again everybody for the advice you all give and thanks for allowing me to talk, it does help.
     
  13. Slugsta

    Slugsta Registered User

    Hi and welcome to TP. I see that you have already received some great information and support - which is what I have learned to expect from this site.

    Would it help you to know that the BS is not deliberate, just like the 'denial'? The brain tries to protect itself, for many centuries showing weakness was dangerous. When faced with a lack of information, the brain makes something up. In fact, we do this all the time without realising it (how many of us are aware of the 'blind spot'in our vision?). At first the BS sounds possible. As the dementia progresses it starts to become more and more fanciful as the brain loses its grip on reality. Always, the PWD believes what they are saying, which is why it is said with such conviction!
     
  14. shazvana

    shazvana Registered User

    Nov 19, 2015
    5
    Brisbane, Australia
    Thanks Slugsta:) Yes, I know it's not intentional, it's just such a change in mum that is has been hard to swallow it but I except it now and understand things better and that is why I am changing my behavior and not expecting her to change hers because I know she can't.
    Mum rang yesterday and talked about my big move and all was quite good, she knows something is going on I think because she keeps asking me if there is more to this sudden change in time to move down than what I am saying there is. I will never tell her the truth of that she is the reason, I never want her to feel responsible, so I just repeated my story that it is mainly due to our daughter being so unhappy here in Qld, unhappy at her current school, the hot weather is not helping my daughters medical conditions and she needs a cooler climate etc and mum seemed to accept this.
    So now, I am working over over over time to get everything organized for this move in about 5 weeks, I thought I had more time but I was clearly wrong. Time flies by way too fast now a days:)

    Thanks again to every single one of you for your advice, kind words and just general support, you really have no idea how much you have all helped to settle me and educate me and I am truly thankful.
     

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