1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
  1. andypandy

    andypandy Registered User

    Jun 28, 2015
    32
    My mum has dementia bought on by strokes and isn't at the stage just yet where she can't be in her own home but she does need us to sleep over at night as she needs help with the loo (doesn't remember to lift her nightie up) and the night time is when she's most confused. She will sleep solidly for the first couple of hours but then she is up hourly for the rest of the night and is wanting to get dressed from about midnight, thinking it's time to get up. I'm hoping someone else who has /is going through this that can offer any advice as to how we stop this, help her stay in bed as it can't be doing her any good and we have to do a full days work after no sleep at night too.

    Any advice would be great
    :)
     
  2. 2jays

    2jays Registered User

    Jun 4, 2010
    11,598
    West Midlands
    Not a good person to reply to this at the moment...

    But why do you say she doesn't need full time care / or carers coming in.... if you have to stay over for the night?

    As I say... I'm not the best person at the moment to reply, but I know of others, when they can, will have better ideas for you

    I just didn't want to read and run...

    You probably wish I had :D


    Sent from my iPhone using Talking Point
     
  3. andypandy

    andypandy Registered User

    Jun 28, 2015
    32
    Thank you for not reading and running it shows I'm not alone :)
     
  4. Mibs

    Mibs Registered User

    May 26, 2014
    73
    Derbyshire
    Hi welcome to TP where you are definitely not alone.
    You do seem to be at a point with your Mum where she needs more help, and I would suggest getting her doctor on board as a matter of urgency, for some medication.
    I would ring the Alzheimer's help line, and/or your local social services dept. who have a duty of care for your Mum.
    The behaviour you describe is quite common, hopefully it will be a passing phase, but I doubt you can carry on as you are and work full time.
    Take care of yourself
    Mx
     
  5. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,239
    Cotswolds
    Welcome to TP andypandy :)

    No, you're not alone. And it sounds as if you and the family are doing an amazing job in caring for your mum.

    However, from what you say, it sounds as though your mum needs assistance 24/7. Does she have carers at home, or go to day care, while you're at work? I understand that she's most muddled at night, but how is she during the day?

    Also, I don't see how, long term, you can both be your mum's carer at night, and go to work the next day. You will become dangerously exhausted, if you aren't already :(

    Honestly, I can only see three options:

    One of you gives up work and moves in with mum, or

    You employ night time or live in carers ( hugely expensive and takes a lot of organisation), or

    You look for a good residential placement for your mum.

    Can I ask, has your mum had a care needs assessment, carried out by a social worker from the local council? If not, I suggest you ask now for an urgent assessment. Look for the local authority name, then in most areas, social workers are employed by the adult social care team within this.

    I wish you all the best of luck :)

    Take care

    Lindy xx
     
  6. Caroleca

    Caroleca Registered User

    Jan 11, 2014
    331
    Ontario canada
    Andypandy,

    I don't really know what you mean that your mom has not reached a stage yet where she can't be in her own home. It sounds to me like she has reached that stage. I think you need to look at caregivers. Not being able to be alone at night speaks volumes.

    It is very difficult on the family to have full time jobs and look after mom, it seems like it is certainly time to make a change. Good luck.
    Carole
     
  7. 2jays

    2jays Registered User

    Jun 4, 2010
    11,598
    West Midlands
    #7 2jays, Jun 28, 2015
    Last edited: Jun 28, 2015
    My mum...... Apparently (by others - namely sis) wasn't ready to be moved into care, when I moved her into care.....

    I have already warned you that I'm not the best person to reply ;) :)

    It wasn't easy... For me.... Or her....

    But mum has thrived being in care.

    She was aware enough to be able to join in with activities, to create a relationship, or sorts, with the carers.... and despite wanting to go home all the time I visited.... She felt safe

    She was aware enough (sort of) to question why she was at this "hotel" for so long.... Even though her "so long" was as far as she was concerned... a couple of days... and mine a month.... Then 6 months... Then 2 years....

    What my sis had problems with.... Was my sis saw what mum would have accepted before she had dementia....

    I saw, not easily, with a lot of guilt monster bashing.... That mums world and needs, wasn't our world and her needs were not being met whilst she lived where she was. In her own home

    Ok so she was ok (ish) during the day... But at night she was frightened of her dreams, that became her reality, so she had to get out of her house..... And knocked on the doors of her neighbours at 2am to warn them

    The struggles she went through in public to join in, to keep up a front, exhausted her. Once she moved into care it seemed she deteriorated.... She didn't.... She just didn't need to try so hard...

    It's a never ending "what if" "should I" hindsight and guilt monster fest... this dementia...for the carers.....

    So long as you keep in mind....

    Her world isn't your world any more....

    And....

    What your gut feeling is telling you is right... that's the one you should listen to.... Not the guilt or hindsight monster








    Sent from my iPhone using Talking Point
     
  8. 2jays

    2jays Registered User

    Jun 4, 2010
    11,598
    West Midlands
    Oh by the way... Welcome to talking point. :)

    Now you are here... You will never feel alone xx


    Sent from my iPhone using Talking Point
     
  9. andypandy

    andypandy Registered User

    Jun 28, 2015
    32
    Thank you for all your comments.
    At the moment mum has 4 care calls in the day, the usual breakfast, lunch, tea and evening. I share shifts with my 2 sisters and we make sure we are there at tea time/early evening and obviously overnight each day. We do have some overnight palliative sits and between the 3 of us we do the rest and at weekends we try to make sure mum isn't left too long on her own and we try to take her out as well so it's not just care she gets from us, she gets some 'fun'.

    But we've always been told by her all our adult life that she doesn't want to go into care and she was my fathers main carer for several years and made sure that didn't happen to him even though when she was caring for him she herself wasn't well. We've always been there for them both and I can't remember a time when life was 'normal' (whatever that is). So this is why we're hesitant to start the care process and I can't get my head around the fact that we know she will feel abandoned by us when that's not what we'd be trying to do, we'd be trying to give her a better quality of life and keep her safe.

    Reading some other posts on this forum I realise how lucky we are that there are 3 of us, but mum living in her own home (none of us have houses where we can have her living with us, she needs to be in a bungalow which she is at the moment, and there is no money to hire someone full time) and us all working full time and having families of our own this is really difficult (I didn't realise it would be quite like this and I know that sounds incredibly naive) and it's only been going on since autumn last year, we initially thought we were dealing with just the effects of the stroke with speech and cognitive problems and other complications she has which are terminal and are a whole other story, but we've realised over time that there was something else (but not wanting to admit to it) then a month ago there was another stroke and it's taken a big chunk. Mum still knows us and she is aware most of the time there something wrong with her but she comes and goes, you can see it in her face and the day to day things she could once do she's struggling.

    Sorry I've waffled on here (way too much) but this is all new and I have to admit I'm struggling with the emotions of it all, seeing mum this way when she was always so independent is the worst and thought of even thinking about care..... even though the sensible voice in my head is saying this needs to be looked into. :confused::confused:
     
  10. Bod

    Bod Registered User

    Aug 30, 2013
    1,182
    2jays comment sums up for me what has to be done in these situations.

    "I saw, not easily, with a lot of guilt monster bashing.... That mums world and needs, wasn't our world and her needs were not being met whilst she lived where she was. In her own home "

    You must do what ever's best for mums needs, if that means going into care, so be it.
    You do your best to find the best place for her, where all her needs are met, your conscience will be clear. (Been there done that)

    Bod
     
  11. andypandy

    andypandy Registered User

    Jun 28, 2015
    32
    Here goes, doc prescribed us zopiclone for 7 days to see if mum can sleep purchased a baby monitor too (as mum lives in a 1 bedroom bungalow we sleep on a reclining chair in the lounge ) hoping to get a few hours sleep tonight, we'l see.
    :):):eek::eek:
     
  12. Beate

    Beate Registered User

    May 21, 2014
    11,745
    Female
    London
    Just as an aside: is she on Higher Rate Attendance Allowance? If not, apply, as she is definitely eligible due to the night-time needs.
     
  13. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,239
    Cotswolds
    Good luck, hope you have an okay night :) xx
     
  14. andypandy

    andypandy Registered User

    Jun 28, 2015
    32
    Not sure about the allowance i'l look into this, there has been talk of her maybe going down the fast track care route for end of life care so funding wouldn't be a problem then as long as she stays at home (not sure what happens then if she needs a CH) but she plato'd again so is stable with her other medical issues so we're holding off on that at the moment. Thanks for mentioning the allowance we'Lloyd definitely look into it:)
     
  15. andypandy

    andypandy Registered User

    Jun 28, 2015
    32
    Thank you x
     
  16. Beate

    Beate Registered User

    May 21, 2014
    11,745
    Female
    London
    She is entitled to AA. It's not means-tested just needs-based. If she was self-funding she wouldn't even lose it in a care home. Charities can help you fill in the form.
     
  17. Notenoughsleep

    Notenoughsleep Registered User

    May 25, 2015
    31
    Wales
    Hi,
    you've just described exactly what I'm going through with my mam at the moment who's had mini strokes and has middle stage Altzheimers . after 2 weeks of night and day sitting and not being able to string a sentence together without blubbering due mainly to sleep deprivation but also to the enormity of what's ahead, social services have allowed me 3 carers through the day and maybe one free night sit a week. I have no siblings so am doing this myself and stupidly told them I'm on holiday from my job until September so they'll reassess my and my mams needs before I go back to work. I've started paying for sitters because I can't handle it any more and they come 10 til 8 so at least I get some sleep and as soon as the day carers are in place I'll have more sleep! Just wish things would be put in place a bit faster. My mams night time activities are like a pantomime and before zoplicone, she was awake every 20 minutes for the loo which she's forgotten to use at night. Now we're down to every hour or two - result! I've just managed to get one night's respite for Thursday in a care home but am wondering how to get her there -not sure what to tell her.
    You've had some good replies on here - it's good to know we're not alone in our suffering.
    Anyway, off to bed I go!
     
  18. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,776
    Salford
    Hi andypandy,Welcome to TP.

    Didn't Andy Pandy end by them all getting into a big basket and closing the lid while someone sang "time to go home"? You could try that:)
    But seriously you could get some blackout curtains, specially at this time of the year when it's light for so long keeping it as dark as possible may help. I have blackout curtains in the bedroom and the window at the top of the stairs and close all the upstairs doors so I keep it as dark as possible and it seems to work as waking up when it's light makes you think you should be out of bed.
    If it's likely she might wander about then this may not be a good idea, however, it's only like simulating the way it is in the winter months.
    K
     
  19. Catherine.

    Catherine. Registered User

    Mar 26, 2015
    32
    I know how you feel

    My mum and I have been going through sleepless nights with my dad who has mixed dementia, but his condition was exasserbated when he fell and broke his hip. what you described about your mum getting up to the toilet every hour was just like my dad. Now we have a mixture of bad and not so bad nights.
    I hope you have claimed attendance allowance and got a care manager involved as you will then be able to get the help you need . We are in the process of sorting all the financial help out so that dad can attend day centres 3 times a week and we can organise a night sitter once a week to give us a break. Dad would not want to go into a home, but he may go in for weeks respite if necessary to help my mum who is 83 .
    We just take every day as it comes .
    All the best
     
  20. niki

    niki Registered User

    Jun 16, 2011
    6
    Birchington, Kent.
    This is so like my own experience. I had to take the responsibility of putting my Mum in a nursing home four years ago. I have four siblings and they left it to me! Even my Aunt didn't want to make the decision. But luckily, I had such great support from my Mum's doctor and social services.
    My Mum had been hallucinating and was sitting in her kitchen at night, all night, because there were people in her bed! It was getting to the stage where she was disturbing her neighbours and doing potentially dangerous things.
    That made the decision easier for me, I wanted her safe and cared for. I live in Kent, she lives in Essex. She took to the care home so well, joined in, went on trips, helped with the washing up. Occasionally she'd say she might want to move but she didn't understand she was in a nursing home.
    Now it has all changed. She had a fall and broke her hip. The hip was fixed but she can no longer get about and has deteriorated rapidly. Bed-bound and barely eating she is now 7 stone. I visit her every week with my daughter. Three weeks ago she hit that stage we all dread, she didn't know who we were. My daughter cried.
    But, we visit her, take her flowers for her bedside, talk to her, hold her hand and talk about the old days and people she knew. She can barely talk now and for some time now what she did say made no sense at all.
    People have said to me, 'you lost your Mum a long time ago,' Perhaps, but I still see her every week. She may have changed, drastically, but she's still my Mum.
    Never feel guilty, it's a very hard thing to do, but for me it was the only thing I could have done and it was right for Mum.





    QUOTE=2jays;1127876]My mum...... Apparently (by others - namely sis) wasn't ready to be moved into care, when I moved her into care.....

    I have already warned you that I'm not the best person to reply ;) :)

    It wasn't easy... For me.... Or her....

    But mum has thrived being in care.

    She was aware enough to be able to join in with activities, to create a relationship, or sorts, with the carers.... and despite wanting to go home all the time I visited.... She felt safe

    She was aware enough (sort of) to question why she was at this "hotel" for so long.... Even though her "so long" was as far as she was concerned... a couple of days... and mine a month.... Then 6 months... Then 2 years....

    What my sis had problems with.... Was my sis saw what mum would have accepted before she had dementia....

    I saw, not easily, with a lot of guilt monster bashing.... That mums world and needs, wasn't our world and her needs were not being met whilst she lived where she was. In her own home

    Ok so she was ok (ish) during the day... But at night she was frightened of her dreams, that became her reality, so she had to get out of her house..... And knocked on the doors of her neighbours at 2am to warn them

    The struggles she went through in public to join in, to keep up a front, exhausted her. Once she moved into care it seemed she deteriorated.... She didn't.... She just didn't need to try so hard...

    It's a never ending "what if" "should I" hindsight and guilt monster fest... this dementia...for the carers.....

    So long as you keep in mind....

    Her world isn't your world any more....

    And....

    What your gut feeling is telling you is right... that's the one you should listen to.... Not the guilt or hindsight monster








    Sent from my iPhone using Talking Point[/QUOTE]
     

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