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. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    1,598
    Liverpool
    Today is not a good day. Mum no longer accepts that the house we live in is home. Up until now mum has been ok if I leave her alone for a few hours, but today she'd got ready to go home, including bagging up clothes.

    Mum is completely resistant to a day centre (even when I pretend it would be a social club) or carers coming into the house, she won't let friends in if she can help it, she's never been any different.

    My question is can I make mum accept a day centre and carers expressly against her wishes? I realise I sound heartless, but I cannot live with no freedom, I cannot stay glued to her side without completely cracking up. I'm not sure how to deal with this. It seems mean to force her into something she'd hate, if she told carers to leave could I insist they stay? If she refused to cross the threshold of the day centre could that be ignored? I'm being a wimp, but I can't see the wood for the trees.
     
  2. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    My Mum went through this and it was really hard, in the end I was really firm with her and told her that I couldn't cope with her at home unless she did have some people coming in sometimes and I had to keep reassuring her that it wouldn'[t take me away from her it would mean we had a better time together. In the end it did work but partly due to a wonderful carer
    gotta run but keep posting xxxx
     
  3. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,519
    Ireland
    My late husband went to a day centre twice, and refused to go back. He hated it. Finally, I was able to get a Home Support worker from the Alz. Society - supposedly for two hours a week, but in reality, a lot of weeks they had no-one available. Other than that, I hired someone privately to come "help with the garden" while I went to work two mornings each week (only 2 1/4 hours each morning, but my travelling time added to the time I had to hire him for) - that cost me a lot more than I was earning, but was worth it.
     
  4. marionq

    marionq Registered User

    Apr 24, 2013
    5,853
    Female
    Scotland
    What a shame not to try a day centre Lavender. When John got on the bus this morning which picks him up at the door there were half a dozen ladies already seated. Sitting next to each other and chatting and dressed up for a day out. His centre is mixed with some just old and lonely and some with dementia. They have lots of activities and the staff are so cheerful.

    Persuade her to try.
     
  5. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    1,598
    Liverpool
    Hi marionq this is why I'm stuck, she won't be persuaded. I don't mention day centre, I talk about a pensioners club, about bingo (she enjoys a game) I talk about how we can arrange for transport, so she wouldn't have to ring for a taxi, I've used every positive bit of spin I can think of, but she won't budge. In the same way she won't accept carers, sitters, cleaners, nothing. I truly need to find ways to keep her safe whilst I get some me time. We've always had a tricky relationship, she's a very stubborn woman, there's never been any reasoning with her and now Alzheimers is making things even more challenging. That's why I'm wondering about just saying you are going and that's it. Can I do that, or do her wishes have to remain paramount? Mum still has capacity to some degree, but I'm struggling with the 24/7 bit. I'm not really coping. Poor mum, this is all me, me me. I know it should be about her, but I have to do something.
     
  6. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    You aren't being selfish, you are feeling desperate and we've all been there xx
    My Mum was also stubborn. Would it work if you went with her to a couple of sessions in other words you duped her into going along to something you were going to do together and then she might actually like it and meet a few people that she actually likes!! I sometimes went with my Mum, stayed for a bit, promised to come back as soon as lunch was finished as I had a doctors appointment, a dentist appointment etc etc and did as I had promised and eventually she settled into the group or whatever it was. Jolly hard work and a lot of firm words.

    My Mum decided that she liked the bus ride! I have to admit that I did in a sense force several things on her - by saying that if she didn't then the only alternative would be a care home.

    I also found a carer who was prepared to take a bit of verbal for a few sessions and she came in I introduced her, left a note for mum saying I would be back in 2 hours and left the house. The carer who eventually formed an amazing relationship with my Mum and was a life saver for me - sat through...mum reading her book upside down, threatening to call the police, lying on her bed for an hour, shouting a bit etc etc etc. We did go through 4 carers before we found the right one.

    It might not work for you.....or you might have tried it all...but thinking of you xx
     
  7. mrs mcgonnagal

    mrs mcgonnagal Registered User

    May 9, 2015
    153
    Dear lavender, the thing is that you can't go on like you are for very long. I was in your position a year ago. My situation became very intense, and finally I had to give up and realise I couldn't do it all. You must have some time for yourself, I don't think it selfish to at least give it a go. I think you must. My mam became very difficult and has been in a home since this autumn and I am still exhausted. It's not easy, but if you both went at first to a dementia cafe or a day centre, maybe that would help? I learnt to be tough, sort of anyway, at least to get some sleep and to insist it was happening. I got some real looks and language but you know, I got over it! Best wishes
     
  8. Tin

    Tin Registered User

    May 18, 2014
    4,826
    UK
    Have you tried staying with her at a day centre, not close by just in the same room and when you see she is occupied just leave.

    Have to say I have not been successful getting mum to day care centres, I have tried. So now we have a sitter that I employ privately, gets on with mum and is very patient and listens to mums endless chatter. Can only afford 3 hours per week and am restricted to certain times and her holidays. Our sitter has been on holiday in Australia for 2 months and I expect her return very soon, in fact I am desperate for her return!!
     
  9. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    1,598
    Liverpool
    Aw thank you everyone!!!!

    We haven't set foot near a day centre. Mums description, even though i pass it off as a club was a group of old biddies in a circle dribbling. She doesn't think she's 80, she definitely stopped counting around 70! She's very resistant to the whole idea.

    I think you are all right about staying with her at first. I'm sure that would be do able. Maybe after that I could get some carers too. I've read some threads on here about difficulties with carers, but the idea of someone keeping mum safe for even a few hours seems blissful right now!

    Bless you all for listening to my moans, you're all dealing with much more than me.

    Lavender xxx
     
  10. daisydi

    daisydi Registered User

    Feb 25, 2015
    257
    Norfolk
    Just in case it helps I got my mum to go eventually by saying she was going to have her hair done and then stay for lunch. Luckily my mum went to a local care home where they had a hairdresser going in on a Tuesday so that bit was quite easy. They used to take people in for day care. My mum was exactly like yours and refused all help as she was fine! It started off one day a week and then gradually increased and she is now a resident there. She is so much better cared for than I could manage as I couldnt even go to the loo without being followed. She has been there almost a year now and she is very happy and we have a much better time together now as I am not so stressed and she is safe and being cared for 24/7. It also made the transition to care home easier as she was familiar with staff and residents.
     
  11. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    lavender whereabouts in the country are you?
     
  12. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    1,598
    Liverpool
    Hi there

    We are in Merseyside. I've checked and it seems there are only two suitable day centres in our area, but two is better than none, we only need one, just hope there's not a huge waiting list as I've not approached either yet. TBH things are calmer now. I suspect she's sundowning a bit as there seems be be a pattern evolving around 4.30ish. I'm also going to try the memory clinic tomorrow, though so far they've not been overly helpful, but any port in a storm. I've got to take more control here. Time to grow a spine at long last!!!


    Lavender x
     
  13. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    1,598
    Liverpool
    Thank you so much, every suggestion helps, they all give me extra ideas on getting her through a day centre door, that's my main focus for both of us just now.

    Lavender x
     
  14. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    That's a great idea, all fingers and toes crossed that they have a place and that you can dupe her into a few visits xxxx
     
  15. lizzybean

    lizzybean Registered User

    Feb 3, 2014
    1,398
    Lancashire
    I agree with Fizzie. The first couple of times MIL went I went with her. Mainly cos she gets anxious especially about new things. I stayed with her for an hour then had a dentist appointment & reassured her I would be back after her lunch. The next 2 times I took her but didn't stay, went back to collect her tho. Since then they have been picking her up in the mini bus. She loves it. Every week she tells me it's a pity I can't go cos I'd love it!!!!!
     
  16. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    1,598
    Liverpool
    Hi everyone

    I'm hoping and praying someone has a magical solution. I originally posted about trying to get my mum to accept we need help and everyone was really helpful and supportive. I have tried the suggestions. I've tried cajoling, I've tried lying, bullying (I know that's not right, what I said was you need to go otherwise we need to think about care homes, nasty of me, but I'm at my wits end) even her consultant has tried explaining day care would stimulate her brain, but no she won't budge. I've offered to go with her almost indefinitely so she wouldn't be alone, but everything is stone walled with a no.

    Mum thinks everything is fine. I know that's the dementia. She says she doesn't stop me from doing anything. However, case in point I went to see a friend. I was gone 3 hours and she was hysterical when I got back because she'd been in her own. Once I was back that was forgotten by her so there is no problem, she's fine on her own. I really don't know where we go from here. I feel like her dementia is making me a prisoner, yet I cannot drag her to a day centre. Top that off with the one most local which looks lovely has no locked door policy and mum has threatened to walk out and in her words I won't see her again. There is another centre the memory clinic suggested, but it seems to fixate in the past with old films, pictures and smells of the past (not sure how the smells work), but mum has never had the remotest interest in the past and wouldn't enjoy that. What can I do to make her understand why she needs to attend a centre when she'd rather not bother and preferring to sit at home with me sitting opposite?
     
  17. helenlong

    helenlong Registered User

    Sep 2, 2014
    10
    Keep strong!

    I don't think your heartless, or selfish at all. Keep strong! My mother is exactly the same, totally headstrong. It is so hard, but the advice from other post-ers is sound. Good luck xx
     
  18. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,973
    Suffolk
    Look at it another way. What would happen if you were taken ill suddenly, or slipped and broke a leg? What would happen to her then?

    I think you have to say 'you are going' Cos that way I will be able to look after you longer. Otherwise you will eventually end up with Carers breakdown. Been there, done that, and it's not a place you want to be!!

    I think you need to get either daycare or a sitter whether she likes it or not. I know that's harsh but I truly believe it will be better for you in the long run. Better for her to go now as well, so she can get used to it before she gets really bad!
     
  19. Amelie5a

    Amelie5a Registered User

    Nov 5, 2014
    88
    Scotland
    Just a thought - if your Mum is so resistant to day-care, how about someone coming in as a befriender/sitter, say from Age UK, Crossroads, or other such agency? She'd still be at home, but hopefully wouldn't be freaking out that you weren't there.

    I can sympathise with you! I'm staying with dad at the moment, following an accident he had. He's fine to be left on his own for a few hours still, although he does have a good friend who comes in most afternoons for a couple of hours. I know how much I need that 'time out' for my own sanity so like everyone else I'd persevere and try and find the option that gives you some much needed me-time.
     
  20. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    1,598
    Liverpool
    #20 Lavender45, Jan 15, 2016
    Last edited: Jan 15, 2016
    Hi there

    I know you are right about a carer breakdown. I don't think I am particularly strong and 12 months of full-time caring have me on a constant edge of tears.

    What you've suggested is exactly what I did say, I was very blunt, you are going, I need you to go, there is no choice and I don't care if you do say no it's what we need. All words I used today though I'm not proud of having tried to bully to that degree. Mum has always been a stubborn self centred person and Alzheimers has emphasised her worst qualities. She counter attacked with I will walk out the day centre and keep walking and you won't see me again. She's a past master at emotional blackmail. Alzheimers may mean she doesn't think entirely correctly, but she's as manipulative as they come, she's also like the fairy off the Christmas tree (sweetness itself) to everyone but me, its amazing how she switches it on and off.

    Lavender x
     

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