I should know how to deal with this!

Discussion in 'I care for a person with dementia' started by Aleis, Oct 28, 2015.

  1. Aleis

    Aleis Registered User

    Aug 8, 2013
    9
    I am a social worker and have experience of advising families in my position. My mum was diagnosed with alzheimers 3.5 years ago. Things became more difficult earlier this year when she was struggling to prepare meals for herself. I initially took over but now with the aid of a direct payment have carers 4 afternoons per week to cook her a meal and provide company. Mum was initially ok with this but just recently is complaining that she can cook for herself and has obviously forgotten the panic and stress she got into when she was cooking for herself, she also had a small fire from the cooker as she put some chops under the grill instead on in the oven and they caught alight.
    Mum is now saying she wants to cook for herself otherwise she will lose the skill. I don't feel she is capable but I feel bad that I am almost denying her the option. I have suggested to the carers that they involve her as much as possible.
    Any ideas?
     
  2. theunknown

    theunknown Registered User

    Apr 17, 2015
    335
    No ideas :( but wanted to let you know your post was being read. I think your idea of getting your mum's carers to involve her in what she feels she can do is a really good one. If it doesn't work out, it doesn't work out. [As long as no-one's killed of course :(] x
     
  3. Aleis

    Aleis Registered User

    Aug 8, 2013
    9
    Thanks for reply anyway:/
     
  4. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,336
    Merseyside
    It's always far harder to apply your professional skills to your family because of the emotions involved.
     
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,859
    Kent
    I agree the carers should involve your mother as much as possible, making cooking a shared activity. My husband was the cook in our house and when it became too much for him we shared. He prepared vegetables, stirred the pot, anything he could do without feeling a bystander.
     
  6. Bod

    Bod Registered User

    Aug 30, 2013
    1,180
    Cooking

    Could your mum "help" the carers cook for her?
    That way you get a better idea, just what she is capable of.

    Bod
     
  7. lizzybean

    lizzybean Registered User

    Feb 3, 2014
    1,366
    Lancashire
    Maybe it is put to her that she prepares/cooks & that the carers are there to help her!
     
  8. Aleis

    Aleis Registered User

    Aug 8, 2013
    9
    Can somebody wave a magic wand and give me my mum back???

    Its some time since I last posted in desperation - thank you for all of the replies. The current situation with mum is that we still have the direct payment (she contributes over half to it but doesn't know as I manage her finances and she would go berserk if she knew!). Mum has carers in now 4 afternoons per week and they walk her dog, prepare a meal and have a cup of tea and chat with her. Mum likes one of the carers (as she is an old friend of mine) but hasn't taken to the second one.

    Since before christmas mum seems a lot worse, her short term memory is awful and she doesn't take anything in. I bought all of her presents and wrote her cards with her but daily she told me she hadn't bought any presents for anyone or written any cards. My daughter put up a christmas tree for her and we have all tried to jolly her into the christmas spirit. Arrangements for christmas were constantly being discussed as mum forget as soon as I told her and she would start making arrangements with her friend to come for christmas day!

    Christmas morning I went to get mum ready to come to me for the day and night and she refused to come as too much effort - all she does is sit all day!. Somehow I managed to convince her it was a good idea. After walking her dog (she never does this now) and packing her and dog into my car we ended up having a good day with all of the family.

    Mum fell out with her sister about 3 weeks ago (sister is particularly domineering and I think lacks understanding about alzheimers , even though I have tried to explain mums symptoms to her many times, they often fall out and don't speak for a couple of weeks but this really affects mum)and told me over and over again that she did not have a sister anymore and was adamant she did not want to buy her a present. Christmas eve, sister turned up at mums and gave her a bag of pressies. Mum has talk about nothing else but these presents and wants to ring her sister all the time. Maybe I was wrong but I genuinely believe mum is better when they are not in contact and I reminded mum that they had fallen out and that mum herself told me that she felt more relaxed with no contact from sister. Its so sad because up until 5 years ago they were best friends, always going off out for the day together and constantly ringing each other up for a chat.

    The new problem mum has is that she has forgotten how to use her telephone so she is unable to call anybody. Mum also switches the phone plug off at night and then forgets to put it back on! There are lots of other little things that mum is unable to do that all together create such frustration and stress for her...and me!. Mum blames all of these things on other people - somebody has been messing with her phone, plus switches etc etc.

    Things came to a head today when after another morning of trying to ring mum and finding her phone unplugged, I sat her down and said we need to sort things out in the new year. Mum said you mean putting me into a home...! I ended up in tears because all I want to do is to make things better for her. Mum had agreed to Lifeline which I will sort this week.

    Care home would be my very last resort. I have tried to control the situation by having a direct payment and keeping social services at bay as I am sure they would be insisting she had more help if they had the full picture and I know mum doesn't want this . Mum has a social worker who is a locum and has visited once in the past year. He does not speak very good English and I struggled to understand him let alone mum! He seemed happy to agree the Direct Payment and let me get on with it.

    What do I do now? Do I involve them again and let them take over as I feel my personal relationship with mum is affecting my professional judgement. I also feel trapped and unable to concentrate on my own life. I run my own social work consultancy business (other peoples problems also seems easier than yours...). I have 4 children (3 older girls who help out when they can) and a son a home. I am in a relationship with a lovely retired man but often feel unable to be with him due to my commitments with mum.

    GP is good and mum likes him. CPN has closed the case as mum is not suitable for medication due to side effects.

    Any suggestion/opinions would help me greatly as I feel quite isolated as an only daughter.
     
  9. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,619
    USA
    Aleis, I wanted to respond to you, although I doubt I have anything helpful to suggest.

    I am sorry you feel trapped, isolated, and that you have no time for your own life. I know those feelings all too well and many others here do also. (I'm an only child, my mother is 73 and has Alzheimer's-type dementia, probably for the past 3-5 years or more but only diagnosed in February. She was previously living alone with no help 100 miles from me and I was killing myself trying to see that she was all right. 11 months ago she was sectioned-or the US version of it-after being found in the cold, no coat, wandering, hallucinating and injured and then moved to a care home after it was determined she needed 24/7 supervision. She is now 10 miles from me and thank God is safe and fed and properly looked after.)

    I'm also sorry to hear about all the practical difficulties you are having in trying to care for your mum and keep her independent. Dementia is just awful; I hate how it not only destroys the person with the disease, but also the rest of us as well.

    I think that at a very minimum, your mum probably needs more visits from carers, and I am thinking daily. As I'm in the States and have a hazy understanding of how your system works, I don't know if you need an assessment, a call to Social Services, to involve the GP, or what, but someone else here will know and I hope will post soon to help you get that sorted.

    There is also the idea of day care or a day centre, to get your mum out, fed, and socializing, and although I know it's difficult to access depending on where you are in the UK, possibly respite care?

    I hope you will not discount the idea of a care home. I am not the only one here who was skeptical about how this would work (for many reasons, all of which I'm sure you can relate to!), especially since my mother, had she had capacity, would never have agreed.

    But, I'm also not the only one here who has had an unexpectedly positive experience with having the PWD (person with dementia) move into a care home.

    If anyone had told me that it could work out, and be the right thing to do for my mother, I may or may not have believed them, but it would have good for me if someone had said that to me. So, I am saying it to you.

    I am not saying you must do this now, or next week, or next year, or ever, just that if and when it becomes a possibility, please do not dismiss it out of hand.

    I am not sure I have practical suggestions about the situation with the phone, other than to ask if there is some way to install a handset that she can't unplug from the wall/otherwise disable. Sadly, I'm sure you understand that these sorts of problems are only going to get worse overall, although there will probably be times when she can use the phone and times when she cannot.

    I am sure you have considered this, but how vulnerable do you feel your mum is from a safety standpoint? I'm thinking of whether it's time to disable the cooker, safeguard her finances, et cetera (apologies if you've mentioned this and I missed it).

    I think Age UK and the Samaritans have people to listen and offer advice, and I'm rubbish at UK phone numbers but will go and look for those for you. If you get overwhelmed, don't hesitate to reach out. I do know that isolated, despondent feeling and am sorry you are experiencing this.

    Age UK: 0800 169 2081
    Samaritans: 116 123 (free from landline or mobile)

    If I've fouled those numbers up, please will someone correct me? (And then you can taunt me for being an ignorant Yank.)

    I wonder if you might find some relief or support from someone to talk to, or a carer's group, or something similar in your area.

    Also please let me gently say that your kids are entitled to your time and attention, and that YOU are entitled to your own life. Please don't sacrifice yourself on the altar of dementia. As I'm sure you know, managing this disease will eat up all the energy and time that you give it, and never stop demanding more.

    You're clearly a good person, who cares about her mother, and is trying to make sure her mother is safe and cared for. I agree that while you have the benefit of professional experience, it can be difficult, if not impossible, to be detached and apply that to your own situation. Please don't berate yourself or be too hard on yourself, if you can help it. Also please remember that none of this is your fault personally, nor is it a reflection of any failing on your part, personally or professionally. This is a fault of the disease. The enemy is dementia.
     
  10. Aloysius

    Aloysius Registered User

    Aug 19, 2014
    23
    It's your mum!

    As you say, it's a lot easier dealing with others' problems, there's just not the emotional involvement. It seems to me that you've been coping amazingly well and helping your mum to live as independently as the wretched disease will allow.

    I suppose there comes a point when it's more important for our mums to be safe than for them to approve of our decisions. I agree that it's enormously painful.The woman who always fished you out of difficulty and was ready with advice - it is so hard to accept that that's no longer the mum you're dealing with now.

    I've almost certainly got to begin the steps needed to get my mum into care and I expect her to hate me for it but as things are it's the only way ahead. She's not coping one bit and she lives in a different county. Like you, I'm an only daughter. I hope you can find some support and help as you navigate these uncharted waters.

    Wanted to add my bit but could reduce it really to- I know how you feel. xx
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.