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.

  1. scattysue

    scattysue Registered User

    Aug 20, 2015
    #1 scattysue, Oct 4, 2015
    Last edited: Oct 4, 2015
    I've been reading posts on TP for a while and am very aware that my situation with my sister (79, diagnosed with Alzheimers July 2013) is nowhere near as stressful or difficult as many on this site, but this weekend has really got me down.
    Yesterday, we had an appointment for K to have her flu jab - didnt want to go, didnt see why she should go, convinced she had never been before, why did she have to go this year? Eventually got her in the car with promises of calling at a cafe she likes afterwards, and the deed was done!!
    Back to her house - hoovered the living room and found a cache of pills scattered around the carpet in a corner of the room - I knew there was no point in asking about them as she would deny that they were hers. The home care person who visits in the mornings gives her her meds each day - I will have a chat with her tomorrow - K must be hiding the meds and pretending to take them.
    Found a pot in the freezer with goodness only knows what in it - growing a very interesting variety of mould - K didn't put it there, I must have put it there when I was in a few days ago - cleaned it out and threw out the offending foodstuff.
    Spent a couple of hours in the garden clearing out the weeds between the paving stones, but didnt have time to finish the job - told K I would finish it when I am in on Wednesday of next week as I will have a longer visit - she tells me today she "thought she would just finish the job herself today as I was taking so long to do it" - then complained later in the day that her hip is sore and its all my fault because she had to finish the garden herself.
    I know its not K's fault, and most of the time she is managing well with the home care and myself dealing with things for her, but right at this moment I am dreading phoning her in the morning (I phone each morning and evening and visit as often as I can) because I dont think I can keep up the "compassionate communication" if she keeps repeatedly telling me that she needs to go to visit our older sister (88) as she hasnt seen her in years - we were on holiday with her 2 months ago and K would not be safe travelling on her own, and I cant drop everything to take her (250 miles single trip)
    Sorry for the moan, but its just suddenly got to me today - a good nights sleep and I hope I will pick myself up again and get on with things tomorrow. Thanks for listening.
  2. sleepless

    sleepless Registered User

    Feb 19, 2010
    The Sweet North
    You are doing a great job of supporting your sister, and obviously know a thing or two about how to deal with issues the right way to avoid confrontation, so please don't be hard on yourself -- you are entitled to have a moan!
    Perhaps you can try to have a bit more space between helping out? The flu jab trip and then the housework and gardening means you are on the go all the time, and this will be tiring enough without the dementia to contend with. I can remember so well coming away from my parents' house exhausted but aware that there were more jobs that needed doing.....it really wears you down, and I think that's what has done it for you this time.
    Your sister is very lucky to have your support, but please look after you as well.
  3. fizzie

    fizzie Registered User

    Jul 20, 2011
    You are doing a really great job in a very difficult situation.
    A matron told me early on that it is so important to have quality time with someone with dementia. She said she had seen time and time aagain where quality time had slipped and the daily grind taken over and then no-one was happy. She meant time remembering, time looking at photos, time laughing and visiting cafes and trying to get others to help with the chores.
    your sister is doing really well too - continuing the gardening and things like that.
    Could you maybe skype with your older sister - this would fill the time gap and it is free if you are both connected? Just a thought but it really does work for some people - even if it could be arranged when your older sister is with family members who could help her. Technology is so good.
    Does she get attendance allowance - it's just that the extra cash might enable her to have a gardener to help out with the things that you are battling with at the moment.
    If she lives alone she should be exempt from council tax - people with severe mental impairment come under an exemption clause for council tax. Again it might free up a bit more cash to allow you less strain and more quality time.

    She won't remember 2 months - my ma didn't remember 2 hours lol. We had the same problem with flu jabs last year and my ma didn't want, didn't have it and even when the nurse came to the house she still refused it - gotta give her 5 stars for independent thinking though!!!!!! Drives you up the wall but i keep telling myself one day i might well be there in that place and i wouldn't want people getting mad at me lololol

    I think you are a star and i hope you had a decent night sleep. Take care, thinking of you
  4. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    You have an awful lot on your plate and it sounds as if you are coping very well.

    Re wanting to go and visit the sister you only saw 2 months ago, how is your sister's short term memory? Could you just keep telling her you'll see about organising it soon/next week, etc? Would she remember that you said the same before?

    I did similar when my mother was endlessly on about the same things (wanting to visit long-dead parents, or bringing legal retribution on her sister who she was convinced had 'stolen' their mother's house! The number of times I was going to take her tomorrow, when the roads weren't so busy, or 'getting on to a solicitor first thing tomorrow', you wouldn't believe. The often-recommended distraction never worked with her - or at least not for more than about 30 seconds - it was on and on and on.
    But I do know how wearing it is - it can seem relentless. The sort of fibs I used do depend on someone's short term memory being virtually non existent, though.
    Good luck, and do keep letting off steam here.
  5. Bod

    Bod Registered User

    Aug 30, 2013
    Rule number one.
    Look after yourself.
    Your no use anyone, if your not well. If this means you get help, then use it!
    Ramp up your sister care package, to the point where it is useful to you.

    Have the meds in Dosset boxes, Carers to see them taken. That's what the carers are there for. Sister won't like it at the start, but will get used to it.

  6. scattysue

    scattysue Registered User

    Aug 20, 2015
    Thank you so much for all your comments and advice. I really needed to get that all off my chest yesterday and feel the better of it today. I think I was really tired and that certainly made things worse, but today I felt like I could take on the world again. :)

    I managed to speak to the morning home carer today about the hidden pills and she promised to supervise the actual swallowing of the pills from now on.

    Thankfully I do have quite a lot of help in place for K, 3 visits per day from Home care, a day at Day care and a very understanding and helpful CPN. I have also managed with the help of a Welfare Rights Advisor to get Attendance Allowance, Pension Credit and exemption from Council Tax for K. Thanks to those who suggested arranging these.

    No mention today of wanting to visit our sister - so a bit of a rest from that meantime. Unfortunately although Skyping was a great suggestion, neither K nor our sister are online so telephoning is our only option at the moment.

    Isn't it amazing how helpful it is to share the bad times - I can't thank you all enough for your support - you are amazing xx

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