1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Not sure what to do next

Discussion in 'I care for a person with dementia' started by jsf, Jan 4, 2016.

  1. jsf

    jsf Registered User

    Jan 4, 2016
    3
    I'm wondering if anyone could offer me any advice. My mum diagnosed with Alzheimers 3 years ago. She still lives at home with my father and both are now well into their 80's. My father is partially sighted and has ongoing treatment for this so he is very restricted in what he can and can not do. To date we, as a family, have coped fairly well. It has now become apparent that we need to try and get some sort of help even if it is just for one morning/day every week. The problem I am now finding myself in is that the care level that they require is obviously now progressing towards personal hygiene, dressing, washing and daily household chores. I am able to help with most things ( as well as juggling my own young family life ) but I'm finding it hard to deal with the lack of interest in their own personal hygiene, cleanliness and deteriorating state of the condition of their home. It would be like a full time job trying to keep on top of it which I can't physically do. If I suggested that someone comes in to help,my mum would flatly refuse that anyone should come into the house and help as she still believes that she can cope. How do I get around this? Do I just tell her (and my dad) that this is what is going to happen and put my foot down? Who would I get in touch with? and as they do have some savings I'm assuming that they would have to pay for this themselves........Thank you to anyone who can offer any advice, I'm now having sleepless nights over this.
     
  2. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,623
    USA
    Hi jsf, and welcome to TP. I am very sorry to hear about your situation and agree that it sounds like more help is needed.

    As I'm in the States and have an imperfect understanding of your system I am not quite sure whom you call to get things moving, but someone here will know and will post soon.

    I'm afraid that many of us on here are familiar with a situation where there is a person with dementia, living alone or with someone else, who firmly states that nothing is wrong, nothing needs doing, and they can cope--when of course, everything is wrong, nothing is getting done, and they clearly cannot cope.

    In order to get help into the home, some of us wait for the crisis (a fall, hospitalization, accident, illness, et cetera) and are then able to effect change. Others arrange for carers/cleaners/assistance and persuade the PWD (person with dementia) to accept them by saying, "it's free" or "this is my friend Mary and she needs the extra income right now" or "your doctor said you have to" or "I know you don't want/need the help, but it helps me, so please do it" or "I'm sorry and I know you don't like this; however, this is how it has to be" or whatever other story/angle/line, true or not, that works for that person at that moment.

    Do remember that you cannot have a logical conversation with someone with dementia; their brains just don't do logic and there is no point bashing your head on that brick wall.

    I do know how hard it is to see the dirty house, the repairs that need doing, the fridge with spoiled food, the unwashed clothes and linens, the list goes on. I also know about the sleepless nights. Many others here on TP do as well.

    It's okay if you can't take care of everything by yourself, personally. You have your own life to consider and, it sounds like, young children of your own. Here is a truth about dementia: it will absorb all the time, energy, and money you throw at it, until you have nothing left. Don't let it destroy you until you have nothing left for yourself and your own family.

    I have gotten tremendous support, advice, information, and help here on TP. I'm sorry you had to find your way here, but wish you all the best.
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,584
    Kent
    Hello jsf

    I`m afraid Amy in the US knows what she is talking about. If your mother feels having anyone in will be intrusive, you may have to wait either until she accepts she needs help [ which could happen eventually ] or there is a crisis situation.

    I understand how difficult it will be to accept this. My mother had a water meter installed because she was told it would be cheaper and then didn`t flush the toilet to save water and money. This was a woman who had more than enough money to meet her needs.

    Please don`t break your back helping your parents. I`m not suggesting you withdraw emotional support and some practical help but if they grow to expect from you, the more you give the more they will expect.

    It does sound cruel but try to think of it as tough love.
     
  4. 1mindy

    1mindy Registered User

    Jul 21, 2015
    539
    Female
    Shropshire
    I went through this with my mum. We hit the crisis before we had the changes unfortunately.
    I made the break through with my oh last week. He is so concerned about money, but if ,as Any said someone needs help financially so will work for us for a day to help her out thenthat is fine. He is in control.
     
  5. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,623
    USA
    I'm just bumping up this thread to ask if any of the regulars in the UK can point the OP towards the correct info for getting an assessment, carers, services, finding out what help they are entitled to and how to get there, please.

    Jsf, how are you doing today?
     
  6. DMac

    DMac Registered User

    Jul 18, 2015
    537
    Female
    Surrey, UK
    Jsf, would your mum accept help on behalf of your dad? This is what our family have to do, as my mum-in-law is too proud to accept help for herself. Because of her dementia, she does not understand or accept that she needs help now. Even though some of the help is in fact for her, we have persuaded her it is 'for Dad'.

    You are entitled to an assessment of their needs, but my experience of trying to get an assessment via the local authority was like trying to extract blood from a stone! if your parents are self-funding, it may be quicker and easier to organise a care package for them yourself. Perhaps start with a half-hour morning visit for your dad, to get him washed, dressed, medicated, fed and watered? There are a number of care agencies who should be able to supply this basic service. See how that goes, then maybe increase the care package as you need to. Good luck.
     
  7. jsf

    jsf Registered User

    Jan 4, 2016
    3
    Thank you all so much for taking the time to reply. I am so glad that I have found this forum for help and advice and also to see that I am not alone in trying to cope. I have also read other threads and I can completely relate to many other situations. Maybe getting support for my father may be a viable option, I had never looked at it from this angle, its always been about Mom and the Alzheimers. Thank you all once again, no doubt I shall be returning to this forum more and more in the near future.
     
  8. jsf

    jsf Registered User

    Jan 4, 2016
    3
    Hi, Thank you for asking. I'm actually feeling a little more positive now that I've found this forum. I shall be looking into getting assessments sorted not just for my mum but dad too. Hopefully I can get things moving in the right direction now.
     
  9. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,623
    USA
    Well, please understand I could be totally off target, but I am going to say to try contacting Age UK and see if they can steer you in the right direction. Definitely ask about your dad as well as your mum; that's a very good point. Given that he has vision impairment, I wonder if there are any agencies/services that would offer support from that angle?

    I also wonder what sort of contact you have with their GP and if they could offer any advice/assistance/support to you.

    I really do know that overwhelming feeling of despair and know it's tremendously difficult. Please look after yourself as best you can. Don't hesitate to talk to your own GP about what you are dealing with, by the way.
     
  10. candymad

    candymad Registered User

    Dec 8, 2015
    21
    Derby
    I rang the council (social services) and asked for an assessment, they said that the person who needs the assessment has to be in agreement, but as long as they are they will visit and see what help is needed, washing, dressing etc. My trouble is my mum won't agree, so I'm getting an OT assessment because we suspected she has had a fall.
     

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