Struggling to provide care

Discussion in 'ARCHIVE FORUM: Support discussions' started by Gill W, Jan 31, 2007.

  1. Gill W

    Gill W Registered User

    Jan 31, 2007
    190
    Co. Durham
    Hi. Thought I’d introduce myself & see if anyone has had similar problems to us, & if they could suggest some means of coping & dealing with things.

    Gran is 86 in February & was diagnosed with Alzheimers Disease late 2005, although I had suspected she was a sufferer years before that. She is too far advanced to receive any medication. Mum & I are her main carers, my aunt ‘helps’ in her own unconstructive, argumentative way.

    SS seem very unwilling to help despite my mum being disabled herself with prolapsed discs in her spine. I inherited the same condition & am awaiting further surgery so am limited with the support & help I can give. I also have 2 boys in school & live 25 miles away (as does mum) so my time during the day is limited.

    We have managed to organise a ‘carer’ for 30 mins at 8.30am & 4.30pm, in order to ensure Gran gets her tablets, has breakfast & has had her meal during the afternoon. Last week, the carer was unable to gain access to the house, two days running. Gran had left her key in the lock; she forgets to take it out. Instead of alerting someone the carer presumed Gran was still in bed asleep and left!! So for two days that week, she never got her Blood pressure tablets, her appetite stimulant & anti-depressant. Not once did anyone ring us & say “it’s been 2 days without a response.” It’s only when Gran realises what the noise is that she answers the phone when we ring her to know she is still alive. The carer is always accepting of the fact the Gran’s had breakfast when she gets there, even though there is no evidence of anything having been eaten. She is never just given something to eat, she is always offered. As far as Gran’s concerned, if she had her meal yesterday, she’s had her breakfast thank you very much, she has no awareness of time gone by.

    We have a private company making meals for her 5 days of the week. Sometimes, if she’s remembered to remove the key from the lock, Gran forgets where she’s put it & the guy can’t get the meal into the house. There is a key safe beside the front door & he was given the number for the pad but refuses to use it. Consequently Gran’s meal gets left on the doorstep until the carer arrives at 4.30pm always presuming she can get in!!

    We asked SS to provide a carer for lunchtimes on the days we can’t be there, to make sure her meal is in the house, warm it for her & sit her down to it. No, they won’t do it. The meal is provided by an outside source. They would do it if we could leave ready made meals in the fridge for her, but because the meal is ready made and DELIVERED, they won’t touch it. Where’s the sense in that?! They suggested we get Gran to a dietician as she’s so underweight & get some meal supplements for her. If the carer isn’t making her breakfast, & they can’t help with meals at lunch time when is she supposed to be given that & by whom?! We just can’t be there every day.

    Gran has recently started to turn her fire off but leave the gas escaping. Knowing this, the carers left a box of matches on top of the fire for Gran to light the fire, & possibly blow herself to pieces when the gas has been escaping all night! We have now had the fire isolated, so she can’t use it, which upset her a great deal, she now thinks we want her to freeze to death because we want her in her box (her words!).

    All this & SS tell us that Gran “doesn’t fit the criteria” for residential care. She’s not a risk to herself apparently. She's fallen downstairs once and broken her wrist, does she have to break her neck? When in bed on a night she is scared to death of the ‘men downstairs’ who don’t exist, telling us she’d be able to run from them if she only knew how to get out of the house she’s lived in for 52 years. She loses the door key because ‘them little boys that come’ take it & hide it apparently. She tells us the little boys are her sons (who are now late 50’s & late 60’s). One lives in Peterborough, the other in Cyprus (he has no wish to be told when & if Gran dies!)

    Mum is close to a nervous breakdown with looking after her. Her sister ‘helps out’ by picking arguments with Gran over the odd things she does & says; she just won’t leave it. Mum is looking after Gran’s finances & is frequently accused of stealing her pension, & wanting her gone so that she can have Gran’s house. Mum can’t talk about her without biting back tears.
    Wits end doesn’t cover it. I am soooo aware, through these boards, that there are people much worse off than us, but surely elderly people are entitled to a little more help than they get? SS just don’t seem to want to know, just because there are family around, who live 25 miles away & have disabilities themselves. They won’t even let one of their carers help Gran have a bath for heaven’s sake, so she only gets one when we’re there. She used to have one every day, we can’t be there every day. No one has ever assessed my mum or me for our capabilities & needs.
    Sorry to go on so long. Just we don’t seem to have anyone who wants to listen & who generally gives a damn about it. It’s so unfair that Gran has to spend her last years with this illness, & we can do very little to make things easier for her.
    I don’t want to get old……….
     
  2. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Gill

    Welcome to TP. I don't think you'll get any arguments from any of us on that score. We've all experienced the 'caring' side of the welfare state.

    I'm so sorry for you all. I agree, your gran deserves better, and you and your mum shouldn't have this constant worry. It seems to me that SS are not doing all they could to help.

    Have you been to see your gran's GP? If you explain to him how serious things are he might be able to put some pressure on SS. It's a disgrace that she's left alone like that.

    I'm sorry I'm not more help, I've no experience of your problems, but there are plenty of members who have, and someone will be able to give you better advice.

    Just keep posting, you'll get plenty of support here.

    Love,
     
  3. EllieS

    EllieS Registered User

    Aug 23, 2005
    170
    SOMERSET
    Madness - Can't Be Right

    Dear Gill

    I can't believe what I'm reading!

    Your Nan's GP should arrange for her to be assessed and allocated a CPN (community psychiatric nurse I think it stands for) who should visit her with your Mum or yourself present to suggest and help put in place all of the things that are/or should be availble to help you all.

    None of this seems to happen easily and in my experience until you get the GP and CPN on board you will have to be prepared to battle .

    It sounds as though the NHS might provide carers but if not you can always arrange this through a private agency that the CPN can recommend.

    One of my relatives had her bed moved into a downstairs room, had a carer first thing in the morning to help her up, wash & dress and breakfast, medicines; then a mid-day carer would pop in to heat meal & medicine; then early evening to prepare for bed & medicines.

    But you should in my opinion start first thing tomorrow with a call to her GP and get the meeting asap.

    Why we should have to battle for our elderly parents I don't know - it's wrong. They've paid their dues in more ways than one and should be respected and cared for without having to fight for it.

    Let me know how you get on.

    Stay cool - there's help out there and you will get it I'm sure.

    Best wishes.

    Eleanor
     
  4. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    Dear Gill,
    Although the Social Services are not being very helpful, you could try contacting Age Concern to see if your Grandmother could go to a Day Centre once or twice a week, as at least then she would have company and a hot meal. They are also very good about contacting someone if there is no reply when they come to collect the elderly person from their home.
    My Mum also worried about the "boys" in her spare bedroom who made such a lot of noise at night and the "little dark men" who sat on her lounge floor watching television. When we took Mum to the GP after a particularly disturbing hallucination, he immediately took action and arranged for a specialist doctor to make a home visit and prescribe medication.
    It really doesn't sound as if your grandmother should be living on her own and she would be much safer in a residential home with 24 hour care. Perhaps you and your mother could visit your own GP's and ask for a Carer's Assessment to show that you are both physically incapable of looking after an elderly person with dementia.
    I got to the stage when looking after Mum, who only lived two miles away, was completely taking over my life and making me ill. Mum seemed to be much happier in the Care Home and I could spend time actually talking to her instead of worrying about her missing tablets or getting muddled up about everything. Unfortunately, she later broke her hip and had to go into a Nursing Home, but at least she was able to go straight to hospital and wasn't lying on the floor at home by herself.
    I think you should take action now, before your mother becomes too ill or your grandmother has a nasty fall while alone in her house. I hope you are able to sort something out soon.
    Kayla
     
  5. MargaretP

    MargaretP Registered User

    Jan 21, 2007
    7
    Hi Gill
    Sorry I can't offer any suggestions for helping with your gran. I've met the same problems with my non living together partner. I've now renamed Social Services Anti-Social Services (ASS). They don't seem to want to know do they?
    Not a very constructive reply but at the moment that's how I feel!
     
  6. Áine

    Áine Registered User

    Hello Gill

    I'd second what Hazel and Eleanor have said about getting the GP involved. It's probably worth stressing the risk elements in this ..... that gran will fall again, or blow herself up with the gas. Unfortunately in the culture of litigation, these are the things that get attention.

    It might be that you need to start afresh with social services ........ if they'll help at lunch time if there are "ready meals" in the fridge, maybe that's the way you need to go. Would be worth seeing what they ARE able to offer and maybe re-thinking your care plan.

    Leaving the key in the lock was my dad's main downfall when it came to carers. Before he went into care we went through a long phase where 25 of the 30 minutes allocated to him were spent with carers trying to persuade him to open the door. I got him a key safe because he wasn't managing to open the door to the carers, but then somehow he got it fixed in his head that he had to leave the key in the door so that people couldn't get in ....... the total opposite of what was needed :(

    best wishes with it. let us know how it goes.

    Áine
     
  7. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    9,223
    Hello Gill, I think you should put in a formal complaint to the Director of Social Services about the inadequacy of the support your relative has received. That should at least make them sit up a bit. Ask for a copy of the SS complaints procedure and follow it, keeping a copy of anything you write in your records. Then, or rather at the same time, you should ask SS to undertake a Community Care Asssesment. See this factsheet. http://www.alzheimers.org.uk/After_diagnosis/Getting_support/info_communityassessment.htmT
    Results of these assessments can be appealed, so be prepared to take things further if you need to.
    Steal yourself and speak up. It is despicable that elderly people are being treated so shabbily by the authorities. There are a number of different sources of help cited at the end of this fact sheet, but you will also get good advice here on TP too. Good luck, keep in touch, Deborah
     
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,403
    Kent
    Dear Gill. Your poor gran seems to be one who will be overlooked by the services unless you and your mother are prepared to make a fuss and demand some better treatment for her.

    From what you say, she really seems at risk, especially with regards to the gas fire. Not only is she at risk herself, but is a danger to her neighbours if she allows the gas to escape for a period.

    I would write as much down as you can and send a letter to her GP.

    As far as leaving the key in the door, I have experience of my elderly neighbour, my mother and now my husband doing that. The reason for this is, should anything go wrong in the night, they might have difficulties finding the key. They do not realize a door cannot be opened from the outside, if the key is in the lock inside. I would have thought the carers, with their experience would have known that.

    I hope you get some solution to your problems. Please keep inb touch.

    Love Sylvia x
     
  9. Gill W

    Gill W Registered User

    Jan 31, 2007
    190
    Co. Durham
    Thank you all for your replies. I thought I might have driven you all off to sleep with the long post, but really appreciate the response. I've been promising mum I'd get active with this site, and seek opinions. This last week made me determined.

    As regards the GP, we have an appointment next week on the same day as she sees the 'head doctor' as we affectionately call him. Previous visits to the GP have not proved fruitful, he told us to get SS involved and look where it's got us! Mum has been to a lot of these appointments with Gran by herself, but my sister & I have decided between us that one of us will attend with them from now on. Mum gets so stressed with it all, she forgets half of what she wants to say. SS got something of a mouthful from me this week. My mum looked suitably ashamed of my outburst but I'm just fed up with their pussy footing around & denying Gran her rightful help. It strikes me as odd that SS in Gran's area say she doesn't fit the criteria, yet when I visited a residential home in my area, which has an EMI unit, they said they'd take her without even seeing her. Just my description of how she is was enough for them. Why is that? One set of rules for one area and another set for the other? Shouldn't it be consistant? It is when its regarding children so why not the elderly?!

    I've read several posts tonight of CPN nurses & will mention this to mum tomorrow. Before now, all thats been suggested is the system whereby her tablets are put into a box for every day of the week?....forget the name of the thing now. (EEK!!) That didn't work. Gran would insist she'd taken her tablets (she's not a baby, she can do these things, don't we know that?!) & she quite obviously hadn't. As her falls had been due to low BP we went back & SS sorted out someone to do it on the mornings before we can get there.

    For the last two weeks, we tried a little contraption beside the front door. A cup hook, squished closed, with a length of chain hanging from it, a key for the front door at the end of it. That solved the issue of the key going missing (it's always in her purse, wrapped in a tissue, so that those little boys don't take it) but left us with the problem that she would leave it in the lock, she just doesn't remember to take it out. So we've done away with it. We've now taken the back door key from her little hidey-hole & put it outside in the key safe. We have also had to sequester a key that she had in a lock in the door between the kitchen & the living room which she locked every night, in order that the carer can gain access from the back if the front proves unuseable.

    The worst part about the fire is that my uncle (gone to Cyprus) was a Corgi registered plumber. It's not the first time Gran's done that with the fire, although it has been more frequent lately. He smelt gas a long time ago & proceeded to lecture her about gas safety. He could quite easily have isolated the fire, but he just left it & ranted at her instead. The company who came tuesday were horrified at what was happening & arrived in under an hour & refused to take any kind of payment whatsoever. They said their payment came in knowing that they had potentially saved an old lady's life. (There are caring human beings around!). The same uncle was the guy who ranted at her in the hospital after she went down the stairs & broke her wrist. He raged at her because she'd brought an old tatty handbag that's like her third arm to her. Good riddance to bad rubbish when he left for Cyprus.

    Gran has attended a day centre on a wednesday now for a number of years since my Grandad died 11 years ago. She thoroughly enjoyed it, & this was one of the days on which a meal wasn't sorted for her, because she got one there. Of late, she expresses the desire to go, & we actively encourage her. But when the day arrives & we ring her at the time she comes home, we discover she hasn't been. She 'didn't feel like it', or 'the bus didn't come'. Mind you, this was the same bus that drove away some months back without waiting to ensure she'd got in the house. She had found a set of keys on the bus when she sat in her seat to go out & had diligently given them to the driver. Problem was she hadn't recognised her own door keys. As a consequence, she was dropped off, but couldn't find her keys. The bus drove off before she discovered she had no keys to get in & ended up sat on the doorstep until I got there as scheduled. She claimed she didn't know anyone round that street, this wasn't her usual house, she lived up there and round the corner (waving her hands animatedly) in the house with two rooms by the front door. (The house she'd lived in when my parents were children about 50 years ago.) I think her days of independant outings are well & truly over.

    Am I allowed to print these pages off at all? I would like to show my mum your responses & let her know that we really DON'T have to do it all on our own, that SS are not the only people we can tackle about things.

    Thank you all for your comments. I will take in all your suggestions & see how far we advance. I'll keep you posted. XX
     
  10. Áine

    Áine Registered User

    I can't think of any reason why not. It's a public forum. Your mum would be able to read it if she logged in, so can't see any reason why you shouldn't print it out for her to read.

    Best wishes to both of you

    Áine
     
  11. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Gill

    If you go to the top of the page and click 'Thread Tools', you'll get a drop-down menu which offers you a printable version.

    Good luck
     
  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,403
    Kent
    Dear Gill. You`re doing well. Keep strong. Love Sylvia x
     
  13. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    Hi Gill
    i don't have much to offer ....except agree with whats been said......Its appalling isn't it....it's hard enough trying to care for a dementia sufferer and then having to fight to get help........
    Love xx
     
  14. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    9,223
  15. Cate

    Cate Registered User

    Jul 2, 2006
    1,370
    Newport, Gwent
    Hi Gill

    Looks as if you have already been given sound advice, however I would echo strongly the need to put everything in writing, and if necessary keep a 'diary of events'.

    You could well have been writing about my mum and our life before mum went to live in the NH. The only real differance being she didnt have a gas fire, but would burn paper in the kitchen sink:eek:

    You dont mention that your gran has seen a Consultant Psychiatrist, if not, I think I would be asking for an urgent referral. You should then find it easier to get allocated a CPN, (they usually are in the same team) and if necessary, both of these will be in a position to support your application for assessment by Social Services and again if necessary a Nursing Home. It really does sound as if your mum is at risk, hard though it may be, it really does seem, for all concerned that this would be the best option..... one thing that is for sure, it isnt going to get any better!

    I wish you luck in getting things sort out for your gran and the family.

    Keep in touch
    Cate
     
  16. EllieS

    EllieS Registered User

    Aug 23, 2005
    170
    SOMERSET
    Another thought......

    Hi again

    Having the gas isolated sounds like a sensible idea - someone also mentioned to me the idea of push in taps (avoid overflows).

    Hope you don't mind me mentioning this.

    Luv
    Eleanor
     
  17. alfjess

    alfjess Registered User

    Jul 10, 2006
    1,213
    south lanarkshire
    taps

    Hi
    I had self closing taps installed in my parents bathroom, because Mum was forgetting to turn off the normal taps, but unfortunately they can't use them. Despite showing them everyday to push, not turn, they don't remember.
    Alfjess
     
  18. Gill W

    Gill W Registered User

    Jan 31, 2007
    190
    Co. Durham
    Hi all,

    I don't mind any suggestions at all. We need the help & I'm grateful for any input whatsoever.
    Thank you all for the advice so far. Will keep posting as to any progress we make.

    Gill
    X
     

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