In Denial and Refusing all Help. Help!!!

Discussion in 'ARCHIVE FORUM: Support discussions' started by SusanB, Jan 15, 2008.

  1. SusanB

    SusanB Registered User

    Jan 15, 2008
    155
    Hove
    Hi All,

    I'm new to this Forum and have from reading some of the threads on this site, have already been comforted by the terrific support and advice that members have been offering each other.

    Mum was diagnoised with vascular dementia last year, further to a previous diagnosis of atrial fibrilation shortly after our Dad died. She is increasingly poorly, both from a physical and mental health point of view as the dementia starts to take rapid hold.

    She has lost her apetite and eats almost nothing, is increasingly unable to handle money (we do have EPA and I help her with money issues as much as possible) and constantly forgets to take the medication in her blister pack.

    Now here's the issue - she is in total denial about her "memory problems" and therefore simply refuses any help from outside sources. Meals on wheels, social care, help with shopping, you name it.

    She was taken into hospital on Christmas Eve, and came out on Christmas Day - this was as a result of untreated angina, another sign of her increasingly self-neglect.

    As you can imagine, she was upset by this and agreed to someone (medical) visting once a week. I arranged this for her yesterday and organised a CPN to visit tomorrow (with me). Upon telling her this yesterday I got shouted and screamed at as she had forgotten that she'd agreed to this and is horrified at the idea of "strangers" in her home.

    I'll report back later on what happens!

    Anyone else had this situation and how did you manage when your Mum/Dad simply refused help?

    BTW - I am one of four grown-up children but it seems to be me who carries the can. My health is suffering as I work full-time and despite asking my siblings to share (at more than one family meeting), nothing changes.
     
  2. Doreen99

    Doreen99 Registered User

    Jan 12, 2008
    66
    Sheffield
    Dear Susan

    thankfully, I've never been in the position you're in but I'm sure others have and will be able to offer you some support and advice regarding your mum.

    Families can be a right beggar and I think it quite often happens that one sibling ends up doing all the work. While you're prepared to keep on struggling, they're quite happy to leave you to it.

    You said you'd had family meetings and they hadn't come up with the support you need, despite saying they will. Have you thought of writing out a list of the various things you have to do, and then getting them to agree to take some of them on? By agree, I don't mean vague promises, but actual concrete agreement to either visiting her on certain days/times or taking responsibility for one aspect of her care? And then making quite sure you're not available to do whatever it is, so they can't dump it back on you?

    I don't know if that is a feasible plan, only you can tell.

    You do have my sympathy for what you're going through, especially as you don't have the support you should have.
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,894
    Kent
    Hello Susan, welcome to TP, although I`m sorry you need it.

    I have total sympathy with your situation. My husband isn`t in denial about his Alzheimers, although he does not have full understanding of the implications, but he does refuse to have strangers in the house.

    I can only hope you get a sympathetic CPN who has the experience of building relationships with challemging sufferers. From what I`ve read on TP, good CPNs are worth their weight in gold.

    Please post with an update after the visit.
     
  4. burfordthecat

    burfordthecat Registered User

    Jan 9, 2008
    1,707
    Female
    Leicestershire
    Hi Susan

    Does sound as though you are having a hard time of it. Seems so unfair when you have brothers and sisters but you are getting the lion's share of the work.

    I have a simular problem with my dad who (also lives alone) forgetting to take his medication. The way I work around it is that I fill out a dosset box for him each week, ask him to leave by the telephone. When he is due a tablet I ring him. Not an ideal situation but I have found that it works well for us (at the moment , anyway).

    Hope you get some more support soon.

    Burfordthecat
     
  5. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Susan, welcome to TP.

    It does seem to be very common that one member of the family is left to do all the caring, while the rest think they have done their bit by telling you how well you're doing!

    But you mustn't let your own health suffer. Make sure the CPN knows how hard you're finding it, it should be possible to arrange some support for your mum, if the CPN can persuade her to accept it.

    Doreen's suggestion of making a list and getting your siblings to take over a specific task is a good one. Don't be afraid to let them know too that it is getting you down.

    I hope the meeting goes well, let us know.

    Love,
     
  6. jaws

    jaws Registered User

    May 8, 2007
    27
    Hello,
    I can empathise with you 100%. My dad was in total denial and while I was trying to get him some help he accused me of blackening his name, having his driving licence removed and making it all up. There was nothing wrong with him - he knew what he needed know and where he needed to go. I had to keep telling myself that I was doing the best for him as he was at risk and how responsible would I have felt if anything went terribly wrong. At first, I felt that I was doing everything but now my brother has come on board and is very supportive - I just had to keep shouting at him for help. My thoughts are with you - remember to look after yourself as well or you wont be able to look after anyone else!
    Jan
    XX
     
  7. Lucille

    Lucille Registered User

    Sep 10, 2005
    542
    Hello Susan

    Welcome to TP ... but sorry you find yourself here.

    I can identify with your situation.

    My mum has VaD and AD ... though I think it's more VaD because of her deterioration and behaviour. When things first started to go wrong and I asked her how she was, I got shouted at ... and then blamed for her failing memory.

    Eventually, we got a diagnosis and then more help arrived. As you have a CPN visit today, then I'm guessing he/she will come up with some suggestions for ways of supporting your mum (and you). Whilst it is very difficult to cope with someone shouting/blaming you for something because they can't remember agreeing to it - or because they see it as an intrusion into their life - you just have to bite the bullet.

    My mum has, in the past said to me that she was going to kill herself, that I was the worst daughter ever and thank god I didn't live close to her and she didn't see me every day. Ouch! :( That hurt, because mum and I are like best friends ... holidays and so much shared. Five minutes later, it was all forgotten. Like you, I am the one who has been left to keep an eye on her, appointments, doctors, you name it. I have found this deeply frustrating and upsetting that my brother does not seem to care. Now, I just roll up my sleeves and get on with it. Why stress myself out over him - I've got enough with mum!:) Perhaps after the CPN visit today, you can discuss things with your siblings again and they might be more amenable once they have something 'concrete' in front of them.

    Best of luck for today and do post back and let us know how you've got on. You'll get loads of great advice, support and virtual shoulders to cry on, here on TP.
     
  8. SusanB

    SusanB Registered User

    Jan 15, 2008
    155
    Hove
    Just got back

    Hi everyone,

    Thank you all so much for your support and also for your helpful suggestions. I'm certainly going to consider them in more detail and it's great to know that there are other people in my situation and although it make sme sad that you are going through the same thing, it's good to know you're "not alone"!.

    Mum screamed at me yesterday down the phone when I said that the CPN was due to visit and I was so upset I couldn't do any work.

    However, today it was totally different and I'm just back from accompanying the CPN to see Mum. My God, some people are just sprinkled with magic fairy dust, aren't they? I must have been gazing at this guy in awe as he struck an immediate rapport with Mum, didn't patronise her or talk down to her but cleverly guided the conversation from medical needs and concerns (even taking her pulse and blood pressure) to some fairly tricky issues, such as food, general housework issues, practical stuff and other support-related challenges.

    She wasn't rude to him - hurrah - and even SEEMED OK to the idea of allowing people who are not family to carry out some practical thing for her, eg: buying a halogen heater for the cold evenings, general household repairs. Well, maybe - we'll see. Even considering it was a start.

    She does "present well" and told LOTS of fibs about going swimming twice a week (she's not been for years), how much exercise she does, how she cooks herself proper meals etc. I think he saw through it immediately!

    However, I was very moved when Mum said that she didn't know what she would do about me - she'd never said that before!
    The best bit...Mum has agreed to him visiting her again.

    So I'm pleased. He's even offered to meet me and my 3 siblings separately from Mum to suggest a way forward.

    S.
     
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,894
    Kent
    Susan this is brilliant. I hope you realize just how good it is to have struck lucky with such a wonderful CPN.

    And the fact that your mother is so grateful to you speaks volumes, even if she is is only able to tell you through a third party.

    The future looks much better now for you, doesn`t it? And I hope it continues.

    Love xx
     
  10. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Dear Susan, I'm glad your meeting went so well.

    That CPN deserves a medal, isn't it funny how some have the knack, while others just make hackles rise. It must have made your day too for your mum to praise you. It's amazing how a few words can make it all worthwhile.

    Let's hoipe the CPN can also work his magic on your siblings. You've made an excellent start to sorting out a support package, well done.:)
     
  11. Doreen99

    Doreen99 Registered User

    Jan 12, 2008
    66
    Sheffield
    Dear Susan

    I was delighted to read your post. You really struck lucky with the CPN, thank goodness. I do hope you take up the offer of the meeting with your siblings - sometime a stranger can be better at getting over what's actually going on than you can yourself.

    Fingers crossed all continues to goes well.
     
  12. Lucille

    Lucille Registered User

    Sep 10, 2005
    542
    Susan

    Wonderful news! What a difference a day makes ...

    I hope you can get something sorted with the siblings and can I have some of the 'magic fairy dust'?! :)

    Take care
    x
     
  13. katdan

    katdan Registered User

    Jan 15, 2008
    37
    Manchester
    Hi Susan

    My Dad also won't have anyone in to help, I had ameeting with someone a few months ago who suggested to my Dad that Meals on Wheels or someone else could come and see him but he said he was ok. I have one brother but it is me who does all the caring, shopping, washing etc. Dad always ssya he is ok to everyone but me, he misses my Mum so much. I have asked him to come and live near me but he won't as he has lived in the same house for over 50 years. I do sympathize with you. It must be so hard for you but hopefully TP members will be on hand for much advise and kind words.

    Katdan
     
  14. alfjess

    alfjess Registered User

    Jul 10, 2006
    1,213
    south lanarkshire
    Hi

    Good CPN's are worth their weight in gold.

    I know that without the input and help from our CPN it would have been me, who was in a pysch ward.

    In the beginning, even with a fractured houmerus (sp) Mum refused all offers of help. Including help from me, wouldn't eat or allow Dad to eat the meals we cooked.

    I introduced the CPNS, Doctors, Carers as friends of mine and we all persevered.
    With the carers, I let her help, make them a cup of tea, until eventually, slowly, slowly, little by little, they could make her and Dad breakfast and administer medication.

    It takes patience. But unfortunately, everything went pear shaped when different carers were sent.

    Families can bring their own problems.

    My brother is a waste of space, I might as well be an only child. In fact, I think I would be better off.

    Alfjess
     
  15. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #15 Margarita, Jan 17, 2008
    Last edited: Jan 17, 2008
    What a great CPN you have .

    I only came across one when my brother was allocated one , he was so good in teaching me look at life from out side the Box , that when my mother gave me so much challenging behaviours I could Handel it so much better .

    I did lean also that when under a lot of stress from my mother challenging behaviour I could not perceive life clearly for outside the Box, so communication between the both of us could get hot tempered, did not solve anything as they so much emotional attachment between us when she use to say cruel thing when all I was doing was helping her

    So I found in those situation it put thing into more perspective for me looking at my life from outside the Box, I stop challenging her , life did seem to flow more easy after that in getting all the support that my mother hated , but needed .
     
  16. SusanB

    SusanB Registered User

    Jan 15, 2008
    155
    Hove
    Interesting to hear your story, Alfjess esp re getting carers in for your Mum and Dad.

    My brother is also useless! Honestly, he tries, but his version of support is doing one thing (maybe a visit for 3-4 hours, taking her for a meal etc) and then NOTHING until I tell him in no uncertain terms to visit her. To be fair, he did oversee the installation of a Med Reminder (which got taken out 3 days later!!) back in November but that's the last time he saw her.

    I've got a meeting with the Alz. support folks next week and I'm looking forward to a good old moan. From me, that is.
     
  17. dora

    dora Registered User

    Aug 1, 2007
    145
    England
    Totally in denial

    My mum-in -law is also in total denial.

    She has had memory problems for several years and is adamant that this is normal for older people. My daughter has worked with people with dementia and is pretty sure mum has vascular dementia.

    We got as far as blood tests for thyroid probs etc, after we spoke to her gp before she went for a routine visit. She had a quick assessment at home and then was supposed to go for a scan and memory clinic appt, but absolutely refuses.

    Her husband is at the end of his tether from the constant repetition and losing things. If he raises the subject of an assessment she becomes tearful and he drops the subject.

    We have suggested going to a day centre just to give them a break from each other, but they have refused. We've also spoken to someone from age concern who is very supportive.

    Where do we go from here? I feel we are just waiting for a crisis.
     
  18. rudge

    rudge Registered User

    Jan 21, 2008
    1
    Refusing help ... but only occasionally

    Hi Susan
    Did you ever get any real help re this. My mother is doing the same. She just about now allows carers to come in to prompt medication, but she won't let anyone else provide any meals for her or do the washing and ironing, and certainly not help her with any personal hygiene ... which is getting increasingly tricky. The difficulty too, that we have, is that my sister and I live at least 2 hours away from her and she can't stay overnight away from home as she gets too confused and then frightened as a result, so we have to rely on people going in to look after her ... what a to do ...
     
  19. SueG

    SueG Registered User

    Jan 21, 2008
    9
    Port Talbot
    Hi everyone!

    I am really new yo this site and have already found that there are people who know what I'm going through. My Mum has both Vascular dementia and alzheimers and is rapidly going into a fantasy world of her own. In spite of frquent vivts by our CPN she still refuses all help and I have to keep one step ahead of her regarding food. Too much and she throws it all out too little and she could eat it all at once. My main concern is also that of personal hygeine. She absolutely refuses to have her hair washed and although she tells us that she bathes she very clearly doesn't. I'm so saddened to see my vibrant smar beautiful Mum degenerate to looking like this.
    I only have one sister who lives in London so it's all up to me.
    Greatful for any suggestions please
    SueG
     
  20. SusanB

    SusanB Registered User

    Jan 15, 2008
    155
    Hove
    What a horrible situation for you, Rudge. Living 2 hours away...not like the other side of the country but far enough away to make it impossible to visit on a regular basis (and have your own lives) whilst looking out for your Mum.

    To answer you - yes, sort of. A fab male CPN visited her last week and she wasn't rude to him! A great start :) He is due to call her this week to arrange another visit so we will see whether she even remembers him :rolleyes: or that he exists...!

    My Mum is starting to neglect herself in a similar way to yours, sadly. I saw her yesterday and she's not washed her hair for about 2 weeks. Also I'm afraid to say that occasionally she forgets to change her underwear and smells of urine. I feel horrible for saying this but if I notice it then sure as hell other people will.

    I think the fact that carers are going in is a great start and you may be able to increase support by building on her trust with the person who goes in. I hope this works and my heart goes out to you. What a disgusting cruel thing dementia is!!!
     

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