I feel like I’m a terrible person but don’t know what else to do

Discussion in 'I care for a person with dementia' started by Trekker, Jul 20, 2019.

  1. Trekker

    Trekker Registered User

    Jun 18, 2019
    157
    Female
    London
    just had another phone call from my mother, asking me to take her shopping on Monday. She made a very coherent argument that she feels bored and isolated in her extra care housing, with my father. Both have dementia, hers far worse than his, with her still recovering from a recent hospital admission with delirium, hallucations, and violent paranoid delusions, none of which she can, of course, remember. Risperidone helping, we think, but now she is back to demanding to be taken shopping, and when I say this isn’t possible her saying she will go on bus. Only trouble is a. she hasn’t been shopping in years b. The last time I tried - in a wheelchair, because she can no longer walk very far- she screamed at top of her voice at me whole way round because I was trying to guide her to things she actually needed and not the pounds of raw meat she wanted to buy. Plus she got very angry when I then asked what she wanted and she couldn’t say. C. As I said above, it was an outing to my house lunch etc that tipped her over into psychosis, and left her unable to recognise her home. D. My father was twice faecally incontinent on that occasion. E. Neither have insight, but partIcularly my mother, neither remember any (my mother) or much of this (my father) so just think me cruel and neglectful and on days like today make this clear. We took both shopping for years while still possible ( and beyond what felt possible) and now have twice weekly food deliveries. From her and his perspective I am neglectful and I feel terrible not to take them out but what else can I do? I finally stopped taking her a year ago because it became unbearably stressful for me and my husband and she was angry and frustrated and came close to physical collapse on several occasions. Plus her mental state is so precarious I think another outing could well end up with another bout of psychosis and another hospital admission. But does that mean they will never go out again? If so, I don’t know how they will bear it, it would drive me crazy, that’s for sure. Has anyone out there got any experience of this or advice, please. Maybe I’m being a coward not to try. Help, please.
     
  2. marionq

    marionq Registered User

    Apr 24, 2013
    5,793
    Female
    Scotland
    You are in a new reality. Nothing can make that go away. Now you are the only sane adult in the mix you have to take all decisions about what will work and what won’t. They no longer have capacity so all is delusional about trips and shopping. It’s very tough but nearly everything about dementia is tough.

    Do what is best for you and they will get used to it. They must get used to it.
     
  3. MaNaAk

    MaNaAk Registered User

    Jun 19, 2016
    1,244
    Essex
    I hope someone will be able to help you soon. You have done all you can for your parents and now is the time to think of getting carers in. I think you also could do with going down to approaching your local branches of Alzheimers UK or Age Concern. Your local surgery will also be able to advice you on what's available in you area. You may be able to get someone to do their shopping for them and maybe get them to a day centre.

    Good luck

    MaNaAk
     
  4. MaNaAk

    MaNaAk Registered User

    Jun 19, 2016
    1,244
    Essex
    One more piece of advice you will need to tell a few love lies to get round dementia. You are doing the work of an angel and don't forget that.

    MaNaAk
     
  5. Trekker

    Trekker Registered User

    Jun 18, 2019
    157
    Female
    London
    Thank you @marionq i really appreciate you replying. It sucks having to be the adult to your parents but you are right that that is how it is and there is nothing to do but deal with the reality of it. Thank you x
     
  6. Trekker

    Trekker Registered User

    Jun 18, 2019
    157
    Female
    London
    Thank you @MaNaAk for all the good advice, and for your kind words. I feel far from angelic but you have made me feel a little stronger x
     
  7. Champers

    Champers Registered User

    Jan 3, 2019
    116
    My mother went through a phase (and still occasionally does!) of ringing me in an almost hysterical state begging me to take her food shopping, despite me arranging daily meals on wheels and an internet supermarket delivery, so I knew she didn’t actually need anything and wasn’t going to starve.

    As we live a couple of hours away, I used to panic and end up ringing her neighbours to ask if they could get whatever she needed (usually cat food and marmalade!) it suddenly dawned on me that whilst I was getting stressed and frantic, it wasn’t actually as urgent as she made it sound. Unfortunately, I probably didn’t help to begin with either by trying to reason with her that she couldn’t possibly need anything, which seemed to up her anxiety further.

    I’ve learnt to say, “Ok. Leave it with me.” Or “That’s fine. I’ll sort something out. Thanks for letting me know.” It seemed that because she’d told me and I’d acknowledged ‘the problem’ it was no longer hers, she calmed down and virtually always forgot completely about shopping.
     
  8. Trekker

    Trekker Registered User

    Jun 18, 2019
    157
    Female
    London
    Thank you @Champers. It sounds like you’ve worked out a good way of dealing with this. Sometimes I manage that too, at other times I fail miserably, like yesterday. We need nerves of steel for this, yesterday mine were shot, but today is another day x
     
  9. MrsV

    MrsV Registered User

    Apr 16, 2018
    95
    Hi Trekker,

    Oh dear that sounds like a nightmare. I feel for you, but I think you have already done enough. Please don't think your terrible, your doing all you can, with the resources you have available to you. and you have both parents with dementia - omg, I don't know how you've managed so far, you're an angel indeed. Perhaps its time to put the pair of them in a home, for your own sanity and your own health. It sounds like you've been struggling along on your own for too long. There was me coming on her this morning for advice for my much smaller and insignificant problem, compared to yours. I particularly like the advice from Champers ….Leave it with me, I'll sort it out. I'll be using that myself. God bless you.

    After spending a lovely day with Mum (PWD) yesterday, then taking her home and sorting out her dinner, and settling her down I went home. Mum lives alone. Mum rang a couple of hours later wanting to know when we were coming to take her out, saying she's been on her own all day, no one's been to visit for weeks. She couldn't remember today, and the lovely family time she had, it took a bit of convincing but she seemed to settle down. Then she rang again, and again, saying the same thing over and over. I managed to calm her down, only for it to start again half an hour later. This went on all night. She cant remember the previous conversations, or that she lives alone and has done for 25yrs, and demands to know why we all haven't come home yet. With the best will in the world, we cant keep going through this. How can we stop this? any advice would be very welcome. Were thinking of taking Mum to the doctor to get anti-depressants or Risperidone (as some have mentioned on here) to calm her down. Were going to try to arrange carers now we have received a list of approved ones in our area. But I cant see it stopping the constant phone calls and the anguish we feel because we cant keep going to her, just because she is 'fed up. We ask, are you ok Mum, are you ill? Is everything ok? But she says she wants company, someone to take her out because shes fed up. I can see its going to come to the point where we will have to think about a care home soon. But we will go the carers route first, see how that goes. Mum cant cook, she can only use the kettle, I don't think she's washing her clothes, or showering, were going to have to start taking over the washing of clothing. We have to keep reminding her that we are her daughters, she often asks why are we in her house 'helping ourselves to her stuff', when we are preparing meal for her. The whole dementia thing is exhausting for all concerned, and we are only in the early states (I think). god help us all.
    Thanks for listening - rant over
     
  10. Champers

    Champers Registered User

    Jan 3, 2019
    116
    #10 Champers, Jul 21, 2019
    Last edited: Jul 21, 2019
    Btw, you’re not a terrible person. You’re a human being under an unbelievable amount of stress. No matter how much you are coping on the outside, your concern for your parents is always at the back of your mind. I’ve learnt, and still learning, that coping with a dementia sufferer is on another level as they very often have no sense of reason or logic. Most people with a specific disease realise they have limitations, not so a PWD.

    My own mother has always been contrary and deliberately sabotaged my best intentions throughout my whole life - I’m pretty sure she always had narcissistic personality disorder. Her behaviour has constantly been abominable and spiteful to me and charming to outsiders. Dementia has exacerbated it and I’ve ended up screaming and swearing at her on occasions - so badly that my husband has had to steer me away and I’m not very proud of the fact I bubbled over and lost control. It think it’s just a build up of frustration and because of all the emotional baggage I have accumulated over the years with her mental cruelty. Ironically, she just looked at me as though I was some sort of idiot as I sobbed and sobbed.

    One of the best pieces of advice I received recently was; there is no law that says you have to look after your parents. There’s all sorts of expectations from society about what we ‘should’ be doing for our parents but those in judgement probably have an image from The Waltons of a homely old couple living with the family, both fully mobile and compost mentis, just with grey hair and a little slower than the rest of the family. In reality, they can become revert to an unreasonable toddler, egocentric and would totally subsume your life if you didn’t take a step back. Remember, your mental health is more important than anyone else’s and if you let it, they can end up pulling you down too. Take care and treasure yourself too. Xx
     
  11. MrsV

    MrsV Registered User

    Apr 16, 2018
    95
    Champers - very well said.
     
  12. wonderfulmum

    wonderfulmum Registered User

    Aug 20, 2015
    18
    Hi
    I found a few ways of keeping mum busy for a few hours. I got some large coloured beads and some plastic wire from the local pound shop. I emptied a couple packets of beads into a large plastic tub and told her I needed all the beads put on the wire in colours... She absolutely loves it and glad she's able to 'help' me.once done I empty them again and say I have more. A sense of achievement goes a long way to help her feel useful.
    It is very hard because my mum too can't stay in, a couple of day centres for few hours are not enough and so she will constantly ring around to see if she can visit folks but obv it annoys some people and her circle of friends have gone down to 5 who also can't handle every week.

    It's a struggle but one day at a time.
     
  13. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,510
    Female
    I think you may well be right - they will never go out of the house again (unless for medical reasons). It just stresses everyone out and ends in disaster. So you are making the right decision in not taking them out. None of us want to make these decisions for our parents, it's horrible. I didn't want to take over my mother's finances and I didn't want to move her to a care home. But if I didn't do what was 'best' (in a terrible situation) who would? It's really miserable making these decisions but we can all support you.

    What would happen if you said "yes I'll take you shopping the day after tomorrow". And obviously the day after tomorrow would never come, you'd just keep saying it will happen on Tuesday, or next week, etc. I suspect neither of them have the capacity to understand time any more so they won't know when that day arrives, and just the act of agreeing may pacify them and assure them you understand that need. Whereas if you refuse, or try to use logic to explain why it isn't possible, it sets up a huge deal for them to rail against, and then you have to deal with that too.
     
  14. Trekker

    Trekker Registered User

    Jun 18, 2019
    157
    Female
    London
    Hi @MrsV Oh dear,what you describe is so familiar, I’m so sorry. It is definitely time for you to get help from carers, first because your mum needs help, and second because you can’t possibly provide this level of help without breaking. The problem of repeated phone calls is a form of torture I am also very familiar with and know how draining it is. It is one of the main sources of my almost constant anxiety, never knowing, day or night, if a call, or 10, is about to come. Finding TP and the lovely people on it has been a lifesaver, and knowing we are all here for each other my greatest source of comfort. Good luck with everything x
     
  15. Trekker

    Trekker Registered User

    Jun 18, 2019
    157
    Female
    London
    Dear @Champers thank you for passing on the good advice you received. I have been looking after my parents, and particularly my mother, since age 7, the first time I remember taking her to the doctor because she was depressed. I am so sorry to hear that you mother has always been cruel to you. Mine has always been demanding, but it is only over the past several years that she has been cruel and hateful to me and lost empathy. I have also lost my cool under her vicious assaults and ended up sobbing, with her stony faced at my distress. I don’t feel proud of it either, but we are only human, and it takes a long time to understand, at a visceral as well as an intellectual level, that the person in front of us is no longer someone we can reason with or appeal to their sense of decency. I hope you treasure yourself too x
     
  16. Trekker

    Trekker Registered User

    Jun 18, 2019
    157
    Female
    London
    That sounds amazing @wonderfulmum Wouldn’t work for mine, unfortunately - she’d attack me for getting her the do my work / treating her like a child/ some other reason- but maybe one day she will became calmer and more amenable to such distractions. The trouble, as others have noted, is that the demands for distraction, outings, visits etc go on and on, with each one delivered almost immediate forgotten- my mother forgets nice things we do for her within minutes, and ends up screaming at my for neglecting them, even as I arrive to visit. It makes going there so hard. I need to go today as am working next few days and am dreading it. Good luck x
     
  17. Trekker

    Trekker Registered User

    Jun 18, 2019
    157
    Female
    London
    H @Sirena I did try a version of that yesterday. My mother demanded to go shopping on Monday, I said, let’s talk about it on Monday, to which she replied, but you’re working on Monday (I don’t usually work on Mondays, but tomorrow am doing a different kind of work, helping moving my daughter’s stuff to her new flat, so not her remembering my work schedule- she doesn’t), and I just agreed that yes, I was, when in all my phone call anxiety I had completely forgotten that I won’t be free tomorrow. My mother responded by saying she would take the bus, and the last thing I heard before she put down the phone was my father laughing in derision, because he still has enough insight to know they couldn’t manage this. I hope that they will both have forgotten about t all by the time I visit later today but dn’t Hold out much hope x
     
  18. wonderfulmum

    wonderfulmum Registered User

    Aug 20, 2015
    18
    Yes those battles still go on too. When she wants out she wants out and nothing I say or do will deter her.

    I hope today is not too stressful for you though I know it won't be easy by far.

    Take care of yourself and breathe!!!
    Xxx
     
  19. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,510
    Female
    Maybe avoid mentioning days and just say next week, or the day after tomorrow. @canary has noticed that if you start a sentence with 'yes', even if you mean no, it avoids conflict. So e.g. "yes, we'll go next week" rather than "no we can't go on Monday".

    She asks to go on Monday, but does she actually know what day it is? They aren't living in real time so you don't have to keep it realistic or worry about whether you're working or available. It is an obsession so will probably be mentioned every time you speak to them, so say whatever is easiest. I know it's difficult to get your head round it but becomes easier. I very rarely say anything to my mother now which remotely resembles reality.
     
  20. Trekker

    Trekker Registered User

    Jun 18, 2019
    157
    Female
    London
    Thanks @Sirena will try x
     

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