1. Q&A: Lasting Power of Attorney (LPA) - Thursday 27 Sept, 3-4pm

    Power of attorney (LPA) is a legal tool that gives another adult - often a carer or family member - the legal authority to make decisions on behalf of someone with dementia, if they become unable to themselves.

    Our next expert Q&A will be hosted by Flora and Helen from our Knowledge Services team. They will be answering your questions on LPA on Thursday 27 September from 3-4pm.

    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.

struggling

Discussion in 'Welcome and how to use Talking Point' started by alwaysworried, Jul 12, 2018.

  1. alwaysworried

    alwaysworried New member

    Jul 12, 2018
    1
    My mum was diagnose with mixed dementia recently and has commenced medication. She is nearly 80 and until relatively recently was a bilingual, active, interested and interesting woman.
    She had a series of health issues - which I think were all interlinked, in light of this diagnosis - and she is now lovely, but vague on details, and has lost her filter to some extent.
    My dad is 86 and is so frightened - not that he admits this - he hovers around her and doesn't let her do anything, and harries her in his worry and distress.
    She gets cost with him as she is very definitely still okay on many levels, and their loving relationship has become rather strained.
    Dad is limiting mum's interactions in his worry, and says he has no time to do anything because he has to know what she is doing - mum is in the relatively early stages of dementia but I fear that she will go downhill rapidly if his continues.
    I also fear for my dad's health as he is disturbed in the night and he will only accept minimal help at home. We have organised a cleaner for their very clean home, and mum has two one hour visits from a local care organisation a week, which she really enjoys. Dad will not countenance more time out although he would benefit as well. He also refuses to have useful things like a milkman ( which would stop me having to take him 16 pints of milk to freeze!) or online shopping although he is entirely computer literate.
    I work full time as a midwife and also do on calls ( and have a 98 year old MIL who falls regularly and has ongoing care needs). I have a daughter with some mental health issues and a husband who has recently retired, and tries to help but is a little bit clueless.

    Does any one have any suggestions to stop me feeling like I am going to drown in a sea of worry?

    Any any good ideas to help my lovely parents would be appreciated...
     
  2. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    7,701
    leicester
    Hi @alwaysworried welcome to TP
    Usually it’s the PWD that refuses help it really is a shame that your Dad can’t see how much more difficult he is making it for himself by refusing extra help.
    Maybe he is of the age and mindset where one cares for thier own without any outside help.
    I personally have no words of wisdom for you at the moment but I wanted you to know it is an Arctic forum with good peer support
    Hopefully some other poster will have some good suggestions for you.
    Now you have found us please keep posting
     
  3. karaokePete

    karaokePete Volunteer Host

    Jul 23, 2017
    2,689
    Male
    N Ireland
    Hello @alwaysworried, welcome from me too.

    I can’t help but wonder if both of your parents would benefit from talking to others in their area who are in a similar position. I know I benefited from visiting a local memory cafe where I was able to chat with other carers.

    You can check for what’s available in their area by following this link and using their post code https://www.alzheimers.org.uk/find-support-near-you
     
  4. Amethyst59

    Amethyst59 Volunteer Host

    Jul 3, 2017
    5,593
    Female
    Kent
    My first impression is that your dad feels he is coping...because he is able to rely on you. Would it be possible for you to show a bit of ‘tough love’ and help him to set up an internet shopping account? This would deal with the milk problem too. Once a shopping list is established you can repeat the order, with just a few changes. Sorry, you probably know that already!
    Your dad might benefit too, from having a bit more knowledge about dementia, so that he can be helped to understand that your mum needs to be as independent as possible. There are information sheets available from the Altzheimer’s Society, either as pdf or you can request hard copies ( and they come quickly!). Or it might suit him to attend a short course giving information. There are carers courses run in some areas.
    As far as his sleep disturbance is concerned (and for me, this was the deal breaker in being able to care for my husband alone) there are some strategies that might help. My husband was getting up to use the loo, but got lost. We left the bathroom door open, light on and loo lid up...and this bought us a few more months of better nights. Then we progressed to sleeping in separate rooms, and that helped for a while as I got a bit more sleep, and we found that he did too. I must have been disturbing him as well. There are lots of aids available, such as pressure mats by the bed, that can alert a carer that the loved one is out of bed. Or motion sensor lights that come on to guide the way to the bathroom.
    I am glad you have found the forum, you will find that it is a really useful source of information and support.
     
  5. Carmar

    Carmar Registered User

    Feb 2, 2016
    1,123
    Female
    Hampshire
    #5 Carmar, Jul 13, 2018
    Last edited: Jul 13, 2018
    Hello @alwaysworried and a very warm welcome to Talking Point. I am sorry that you have had cause to find us but this is a very supportive community and someone will always try to help with advice or just a listening (cyber!) ear if you need it.

    Your poor Dad, as you say he is obviously very frightened. This is very common for primary carers as the weight of responsibility 24/7 falls on their shoulders and the feeling of 'what may happen' if the loved one isn't watched every moment of the day is not just a fear but a definite reality. Often 'anything' can and does happen, depending on the symptoms of the disease in the person concerned. I am sure all of us who have been or are currently caring in this way have felt the same. I know I did. It is completely exhausting but also very difficult to let go of, the terrible fear for their safety. You have an emotional dilemma. You want to do all you can to help both your parents but your life is already demanding and you have your own immediate responsibilities and limited time. No one can force your Dad to accept help, but you can draw a line in the sand as far as your own assistance goes for things that he is quite capable of doing himself. The milk and shopping for example. Although it may seem easier for your Dad to just rely on you, you may have to take your courage in both hands and tell him that these are things that can easily be solved independently of you and that you are struggling to continue to fulfill them yourself when it not really necessary that you do so. It's hard to take a step back like this, but it may free some time for when you are really needed, perhaps to stay with your Mum for a few hours occasionally so that your Dad can go out for some respite in the future. You too need to save your own energy for what is important.

    If a care agency is already involved and your Dad has accepted this much help, would it be possible to have a very frank discussion with him about the long term affects on his own health and so add a few more weekly hours? Caring for someone with dementia is a long haul role. Sadly, most of us doing it live from hour to hour and day to day and it may be that your Dad is afraid to look ahead and is already grieving for the wife he has loved all his life and the relationship with her that he is losing due to the dementia. Ultimately, no-one can force him to accept help, even Social Services will be unable to assist if he is insistent on refusing help. Sleep deprivation is torturous and that can't be helping his thought processes. I hope you manage to have a chat with your Dad and help him to help himself and your Mum.
     
  6. Tappers61

    Tappers61 New member

    Mar 10, 2018
    5
    Hi always worried.
    reading your post I don't think I can add much other than I know exactly how you feel and have just posted a similar message. I have tried to put in boundaries with mum so she knows what I am going to do and when, have to write things down because she doesn't remember conversations so well! I am just trying to take one day at a time and keep reminding myself that I can't make it better and can't do it all!
    Remember one big thing though... you are there, you are helping and you are AWESOME for being there!
    This forum is great to know that you are not alone, even if it feels a bit like it!
    Look after you :)
     

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