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Becoming my Mum's Carer...

Discussion in 'I care for a person with dementia' started by HillyBilly, Apr 10, 2016.

  1. HillyBilly

    HillyBilly Registered User

    Dec 21, 2015
    A lot has happened in the last 4 months. I am already very, very grateful for this forum even though I have yet to post anything of any use/help to anyone else, making me a taker, not a giver, for which I apologise unreservedly.
    I've been on a steep learning curve, a curve that most of you are further along than I and which I know is only, for me, just beginning. And I'm not even a real carer, yet.
    I've had HUGE battles with UK Social Services that have, in some perverse way, almost been fun. I've learnt a great deal about how "the system" works in the UK.
    Acronyms are now part of my everyday language. I've had to learn about DoLS, have had a safeguarding alert to deal with involving the UK police, had a SW removed, had to attend a Best Interests Meeting in the UK (what a waste of time/resources) and found a wonderful solicitor.
    To make a long story boring, my mother IS moving out of a UK care home to come to Ireland to live with us (me - only child - and my totally-on-board partner). Am still bureaucracy-sorting (both sides of the Irish Sea) to achieve the desired end result but I WILL get there.
    Those of you this side of that sea may appreciate that things here are dealt with in a quite pragmatic way, without the involvement of Social Workers - not saying that it's better or worse, just "different". The UK side of my own personal saga has had difficulty accepting that things just might be different in other parts of the world and yet work OK.
    I think that I fall into the "dutiful daughter" category but Alzheimer's is strange, isn't it? My mother told me a few weeks ago that she loved me. I'm 50 years old and that's the first time I remember her ever saying that!
    So, scared, apprehensive, excited, clueless in Ireland.
  2. MollyD

    MollyD Registered User

    Mar 27, 2016
    Hi HillyBilly.


    I'm new here too. And Irish. The health system is shambolic isn't it?

    Are you in touch with your District Nurse on the Irish end? She's the link to everything once your mum isn't in hospital or a NH.

    My mum freely started telling me she loved me for the 1st time in her life once she had her hip op and developed dementia overnight. She's not as effusive now as before but still more open with her emotional range than pre-op.

    There are a number of Irish people here who have given me support and advice.

    Hope you find it supportive here too.
  3. HillyBilly

    HillyBilly Registered User

    Dec 21, 2015
    Hi Molly.
    I've sussed who's who with regards to Mum's future health & wellbeing here and spoken to them all. I've arranged a lovely GP for her and know who will be the PHN and OT for our area.
    Once Mum's in situ, the assessments etc will begin but as nothing in that respect can happen until Mum's actually living here, there will be an unavoidable hiatus during which we'll be winging it, in limbo lol.
    At the moment am waiting for a PPS no to be issued so that I can get Mum a Medical Card which fortunately, due to her age, she's entitled to.
  4. Rodelinda

    Rodelinda Registered User

    Jun 15, 2015
    Hi, just to say all the very best. My Mum has been living with me and my partner for 4 and half years. She has vascular dementia and things are now getting harder and there are times when we wonder whether we're doing the right thing. But she is with us, I can make sure she has good food, can support her with what ever she needs and just be here for her.

    However just a few things I would think about (we didn't!): do try to establish support and others coming in straight away (we didn't and it means that as she doesn't want any one else here, we can never go out together); establish at the outset arrangements for respite to give you a decent break (even if you don't go away); think about and agree your limitations (for example we're clear that we've now done all we can to the house for someone with limited mobility and so if things deteriorate hugely more, my Mum won't be able to stay here safely; also we have agreed where the line is on personal care). The big thing we've learnt is not to sweat the small stuff and, you know what, almost everything is small stuff!

    All the best - it does work for us and we've done it without SW or anything but have had superb medical care from local (rural) GP and local hospital. Sue
  5. HillyBilly

    HillyBilly Registered User

    Dec 21, 2015
    Many thanks for your words of advice Sue x
  6. Maisy76

    Maisy76 Registered User

    Mar 24, 2016

    Oh bless you - I thought I'd take a quick look at one of your threads seeing as you took the time to reply to mine re Man's Shed.

    Is your mum living with you now? I hope it's going okay. I want to wish you the very best of luck, you certainly are a "dutiful daughter" to have your mum at home. Just don't forget to make changes if things get tough for you okay? You have your life to think about too...

    Er sorry for calling you Hillbilly instead of Hillybilly by the way...oops! And I can't even use the excuse that it was sent from my phone cos it wasn't!!!

    Get in touch if you think that there is anything I may be able to help with/advise on re your mum and I'll let you know if I've locked dad in a shed! Only joking bless him...tempting sometimes though! Poor ol' dad, whatever would he think if he read all this?!

    Take care and thanks again, Mx
  7. HillyBilly

    HillyBilly Registered User

    Dec 21, 2015
    Thanks M for reading and replying!
    We're still awaiting essential paperwork to be sorted here in Ireland in order for Mum to make the move so she's still in the CH in the UK unfortunately. She's excited about the move though and greatly looking forward to flying in an aeroplane!
    We're also rebuilding our bathroom to make it much bigger and with a level access shower. The old one was falling down anyway! We got the foundations in last week and today we poured the new floor slab. We have builders in next week to throw up the walls.
    I'm in agony with my back and just about to go and have a hot shower...in our caravan lol. Then I do believe there's a bottle of wine with my name on it!
    Thanks again and good luck with your Dad etc. You have your holiday to look forward to soon don't you?
  8. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Oh the joy of builders!
    Sounds like you are getting a lot done. :)
  9. HillyBilly

    HillyBilly Registered User

    Dec 21, 2015
    Just back from a trip to the UK to see Mum in her CH. My experience confirmed for me that moving Mum out of that environment to live with us over here in Ireland is the right thing to do.

    1. Mum was hit round the head by another (male) resident. There seems to be no lasting physical or emotional damage but at that moment of being assaulted Mum must have been frightened and hurt. I understand that "these things happen" but that still doesn't make it right or acceptable.

    2. The latest CQC inspection report for the CH has "requires improvement" in 2 out of the 5 categories.

    3. The staff seemed more "frazzled" and not as friendly compared to when I've previously visited.

    4. A lady in the room next to Mum fell early one evening - faceplanted on the floor of her room. I was on my way back to Mum's room from the dining room with some tea, no staff around, other than in the dining room, and was alerted to the incident by one of the other residents who was distressed by it all. Mum had also heard the commotion and had made her way (minus zimmer frame somehow) to the lady's doorway and was offering reassurance. Still no staff to be seen. I ran back round to the dining room and alerted a member of staff. They rolled the lady from her downward facing position but said they weren't able (allowed/trained?) to get her up off the floor. 45 minutes later the poor lady was still sitting on the floor (with 2 members of staff with her), waiting for an ambulance. Of course the next day she was as right as rain but sporting a cracker of a black eye.

    5. Mum's bathroom, bin etc was full of used pads and she was running out of clean clothes (jeans all wet).

    I had 3 days in the UK and when not visiting Mum I had to deal with her house contents, rubbish clearance etc. Exhausting. Still not finished either. She had an old Electrolux fridge from the 50's, older than me, still working. I actually cried when I had to unplug it for the final time and it went. How ridiculous was that?!

    The only highlight of the trip was meeting up with an old friend from university who I've not seen for nearly 20 years. He and his wife kindly fed me, poured copious amounts of wine down my neck and put me up for my final night (no bed left in Mum's house now lol).
  10. HillyBilly

    HillyBilly Registered User

    Dec 21, 2015
    Gearing up for yet another trip to the UK, this time to finish off packing up Mum's house ready for the removal company on Monday. Also to do the rounds with the LPA. Completion on Mum's house set for the Tuesday.
    There is so much stuff to be gone through in the house - boxes and boxes of...STUFF, going back to the 50s. Not much furniture left in the house now...no bed, so sleeping on the floor for several nights I guess. Oh joy.
    And then also to try to be all sweetness and light when I visit Mum.
  11. fizzie

    fizzie Registered User

    Jul 20, 2011
    Amazing - how much you have accomplished in such a short time.

    So pleased you are taking mum home
    The care home sounds horrendous. Please phone the CQC before you leave or write to them if not to tell them what you have just told us and also the local authority adult safeguarding safety desk - you may make life slightly better for some of the people who are being left in that dump!!!
    You can contact us at our National Customer Service Centre in Newcastle:
    Telephone: 03000 616161
    Fax: 03000 616171

    Or write to us
    CQC National Customer Service Centre
    Newcastle upon Tyne
    NE1 4PA
  12. arielsmelody

    arielsmelody Registered User

    Jul 16, 2015
    Good luck! Make sure you at least buy a cheap blow up mattress when you visit - sleeping on the actual floor is a step too far in my book!
  13. HillyBilly

    HillyBilly Registered User

    Dec 21, 2015

    Thanks guys. A friend suggested a blow up mattress too! I shall have to see if I can source one when I get there.

    Fizzie - ironically, the home has a good reputation, from what I've heard anyway. I know that the proper safeguarding channels were gone through when Mum was assaulted. If you think that I should write to the CQC I will seriously consider that. I've been trying not to "rock the boat" TBH.

    On an aside, I have a dilemma over what to do with "THE STUFF"!

    It's stuff that Mum has kept (hoarded?) over the years, some of it obviously of sentimental value to her eg my first baby clothes. bootees etc but also my old school blazers and hats (?!), toys and games, newspaper cuttings etc etc...I'm getting anxious just thinking about it.

    What do I keep? What do I get rid of? Should I keep things like the baby stuff so that I can show them to Mum in the future? Would that give her pleasure? I know she can't recall WHAT she has kept so I do have tacit carte blanche to do what I want with it. OK, so opening the box to find my old school blazers made me smile, in that moment, but do I really want them?! I can't bring EVERYTHING here to mine! I'm already a regular at her local charity shop with boxes and boxes of bric a brac, clothes, books etc!

    I know it's trivial but it's still another painful THING that needs to be done...
  14. arielsmelody

    arielsmelody Registered User

    Jul 16, 2015
    (You can get an airbed at Argos, or you could try a camping shop or maybe even a camping section in a large supermarket.)

    My mum has a strong hoarding streak so I'm quite aware when it comes to the problem of 'stuff'. My mum has physical problems but full mental capacity and I know - from experience - that trying to get rid of things is very distressing for her. But there is an element of out of sight, out of mind - if your mum is already separated from these things, and she is going to a totally new environment, will she ever remember that they existed? I'd say you have to be tough. It will cost a fortune to try to move or store all these items, and balancing them against the pleasure your mum might get from seeing them again, it's just not worth it. I'd keep anything you can see would have real sentimental value, but the rest has to go.

    Have you spoken to a house clearance company? They would be able to come in and clear the house for you. Or if you are doing it yourself, there are household rubbish/recycling tips that you can take things to.

    Good luck! I hope it all goes reasonably smoothly for you and your family.
  15. HillyBilly

    HillyBilly Registered User

    Dec 21, 2015
    Yes, I know I have to be tough!
    Already done the first house clearance, that was on my last trip over a couple of weeks ago, to get rid of the bulk of the stuff. The final removal is booked for next Monday so this is where I have to pare things down to the bare minimum, as we only have a part load to Ireland booked.
    The rest has to go. The rest has to go. The rest has to go.
    I shall keep repeating that mantra!
  16. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Getting rid of the sentimental stuff is so hard.
    When I cleared mums bungalow I kept finding stuff in cupboards and drawers that made me go and have a little weep in the lounge. I know Ive brought far too much stuff back to my own home.
    I found that a bottle of wine helped........
  17. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    Do you think taking photos of the things with sentimental value would give you something to talk to you mum about? You could keep some of the very small things like baby bootees.

    I'm a terrible hoarder and I keep saying I'm going to have a clear out before my kids have to do it when I'm dead - or worse. If I'm honest it'll only happen if I move home!!

    I've got another 30-40yrs to sort it...I hope!
  18. HillyBilly

    HillyBilly Registered User

    Dec 21, 2015
    Back from latest trip to the UK.

    I was pretty ruthless with the STUFF. Have kept things of obvious sentimental value, but also took 4 full car loads to the tip, 2 to the charity shop and gave some other bits and pieces to a couple of friends of mine. The rest got put in a container yesterday morning and will turn up in Ireland...at some point.

    Mum's house was pretty filthy so I did my best to clean it up and make it at least smell pleasant. I didn't bother to get an inflatable mattress in the end - slept on a load of cushions etc on the floor for 4 nights. TBH I was so exhausted at the end of every day I could have slept on a bed of nails. Last night a friend put me up again so had a comfy bed and a hot shower (badly needed by then!).

    It was quite emotional locking up for the last time and taking the keys to the estate agent. But at least it's done.

    As for Mum's CH!

    On one visit there were no towels in Mum's bathroom. When I arrived she was distressed at having wet herself and couldn't find clean, dry clothes. Calmed her down, took her to wash herself - no towels! That's not right, surely?

    On another visit, a male resident (the very same one that has previously assaulted Mum) appeared in her doorway with his "bits" out and stood there, fiddling with himself. Wasn't sure if he was masturbating or trying to rearrange his pad. I moved him on but not before he weed in Mum's doorway. From Mum's records, a couple of nights previously, staff had been alerted by Mum's screams and found the same man in her room, obviously distressing her.

    I witnessed them about to serve her tuna sandwiches, when they know she's a vegetarian.

    Are these sorts of things "normal" or am I right to be concerned? So glad she's not going to be there for much longer.
  19. Tin

    Tin Registered User

    May 18, 2014
    Right to be concerned, hope you get her out of there soon, but still make a compliant to those who run this place.
  20. HillyBilly

    HillyBilly Registered User

    Dec 21, 2015
    Having slept on it all overnight and discussed it with my OH I have decided that I do need to formally register my complaints to the CH, even though Mum's not going to be there much longer.
    I'm not sure what can be done about the male resident in question. I certainly don't want him moved or anything.
    Should I also voice my concerns to the CQC?

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