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Carers UK Forum • Behavioural issues...the "perfect" storm
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Behavioural issues...the "perfect" storm

Posted: Thu Jan 19, 2017 4:09 pm
by Lo_1701
My mother is almost 84 and is, by and large, fairly independent normally. Lives on her own and is a classic introvert, although at times she complains of being lonely. She attends a day-club once a week. She has friends locally and nationally, but never phones them, doesn't write letters, won't invite her local buddies to come have a coffee....she basically isolates herself and seems to rely on me for her social interaction. I have two sisters, both of whom live too far away to be useful (one in Canada, one about an hour and 20 mins drive away). My sister in law (and her three kids) live about two miles away. My brother died suddenly 9.5 years ago.

Mum doesn't leave the house unless picked up by car at her door and vice versa. I do her shopping, pay her bills, look after her finances and deal with everything offical for her. She has a fortnightly cleaner and is still normally capable of loading the dishwasher, washing machine etc, and will use her hoover a couple of times a week quite happily. Before Christmas, she was baking presents, making jam, and until last Thursday was happily cooking for herself. She uses a walking stick outside the house, but normally is fine with just that. She does have the occassional fall and has a community alarm. We have a three wheeled trolly thing for her when she's not feeling full of beans, and she uses that if she feels the need (it took some persuading but it's now "wonderful").

On Thursday last week she crouched down to pick something up, lost her balance and rolled over onto her back, in her carpeted living room. She called the alarm people as she couldn't get herself up. I was out at a yoga class, and my sister in law was at work, so the alarm people came to help her. By that time she HAD got herself up, as she had to unlock the door for them (we've now bought a keysafe and will fit it this weekend). Call out person checked her over and called a Doctor in to see her, just to be safe. Dr pronounced her fine, told her to take painkillers and keep moving gently to stop her seizing up, but he didn't even think she'd bruise. And she hasn't.

However, since then, she's pretty much lain in bed all day, not eating, not drinking, not taking her meds. It doesn't matter what I say, she ignores me. "I can't" seem to be her favourite words.

It's now Thursday and she's still laying in bed, despite being told repeatedly that it's the worse thing she can do for her pain. We're all making her get out of bed when we visit. I KNOW she's in pain, but the only fix is following doctor's orders. She won't take painkillers unless she's made to either. She has medicated plasters for her back that I believe are a mild local anaesthetic, and uses two each day. Despite being able to show us exactly where on her back they need to go, she "can't" put them on herself, so I or my husband have to go up each morning to do it for her.

I've suggested I take her to the minor injuries dept, to double check and maybe get x-rayed, but she refuses. She keeps saying that she can't move, can't get to the car, can't sit in the car..... I'm at a loss, totally. I can't call an ambulance for a sore back. We end up at stalemate, her groaning about how much pain she's in, and me crying in frustration that she won't do anything at all to help herself. She has been checked twice now by the doctor, who's refusing to come out to her now - it's 100% behavioural, in her estimation.

I feel totally abandoned. I can't physically force her to move. As a side note, she's a total expert in emotionally blackmailing me and I'm exhausted by the emotional battering I'm getting from her. The dramatic phone calls are so distressing that I've stopped answering the phone to her and make her leave a message so I can prove to others how she's talking to me. I'm having panic attack after panic attack, and feel so hopeless.

I think I know the cause. On Thursday, when we went up after I got home (10pm), I realised her cat was struggling to breathe (18 years old), and we realised that it was time for him. He's been deteriorating for 4 months and we just knew he'd had enough on Thursday. I took him to the vet on Friday and I know that she's grieving for him (he was my brother's cat initially, so there's extra pain there). I'm devastated myself as he was the most gorgeous, loving, cuddly ginger boy.

I don't know how best to help my mother. I have medical conditions myself and feel this situation is getting out of control. The consequences of my losing control of my own health are dire - I have severe asthma, serious depression and epilepsy. I'm terrified.

My husband and sister in law are both helping loads, and my two sisters are (I believe) telling her the same stuff as we are ,about tkaing painkillers and keeping moving and getting out of that darn bed. But she's ignoring us all. Somehow, I'm to fix it, without her doing anything herself. I'm desperate.

Re: Behavioural issues...the "perfect" storm

Posted: Thu Jan 19, 2017 4:37 pm
by christina 17
Hi Lois

Welcome to the forum.

I so understand your dilemma after going to visit my mother in her home for a few years as she developed one problem after another and I had to overcome her resistance to outside help, which she eventually accepted.

You will get great support and advice here. I have when and each time I have posted since last year.


Re: Behavioural issues...the "perfect" storm

Posted: Thu Jan 19, 2017 7:58 pm
by MrsAverage
Advance apologies for a short reply but am dashing out...
How about getting another cat. Would she move to look after it and feed it.?
( I only lasted 10 days after my last 21 year old moggy died before went to get new one. House was too empty without a furry body)

Re: Behavioural issues...the "perfect" storm

Posted: Thu Jan 19, 2017 8:54 pm
by Lo_1701
Absolutely and most definitely No to another cat. She doesn't want one, and I don't want her to have one.

She didn't care for this one particularly well in his final years (neglect, rather than cruelty, although you could argue neglect IS cruelty, and I do) and I spent the last 6 months of his life going up three times a day to feed him and give him his meds. If she doesn't have an emotional attachment to a cat she's had in her life for over 15 years, one who is very cuddly and affectionate and yet she still neglected him, there's no hope for a rescue cat, and it would just mean more work for me.

I forgot to mention - I'm running my own business whilst this goes on. Or at least, I'm trying to.

We've just had this evening's phone call - hubby has gone to pick up her water bottle for her. She's knocked it onto the floor behind the sofa. At least this means she's out of bed.......

Re: Behavioural issues...the "perfect" storm

Posted: Fri Jan 20, 2017 9:38 pm
by Lo_1701
Today was horrific.
9.30am, I get a call. My sister in law has found my mother on the floor in her bedroom. She got up at 6am to go to the loo, and her legs gave out under her, landing her on her knees. She then sat down on her bum, then flopped over onto her side. She ended up with her back against the chest of drawers, facing her bed, with her head under her bedside table. Her community alarm was on the table and in easy reach, but she didn't activate it. No explanation as to why. She's been on the floor for almost 4 hours by the time I get there.

We can't get her up. She refuses to even sit up, saying her back is agony. There's not enough space for us both to get in and lift her and my mother refuses to take any of her own weight, so we realise that we won't be able to get her up ourselves. She's shivering, cold to touch, in deep distress and sobbing.

I contact my doctors surgery and they advise me to call 999.

I contact 999 and ask for help. They refuse, saying the community alarm people are the right people, as this isn't an emergency (a fair assessment, although one could argue that an 84 year old lying on a cold floor in just her nightgown for approaching 4 hours is coming close to qualifying as one, no?). Even covered with blankets, she was shivering.

I contact the community alarm people. They refuse to come out, as she needs to be able to "weight bear" before they can help. Please note - this is the "FALL TEAM" who refused to come out. If an old person has fallen and can't get up, it means they can't bear their own weight. That means they're not eligible for the fall team to come and pick them up. Apparently, the "fall team" only come out if their clients have already picked themselves up. Then they can "pick them up" again, just to earn their money, it seems. They tell me to call 999.

I contact 999 and ask again for help. They refuse, saying the community alarm people are the right people.

I contact the community alarm people again. Again, they refuse to come out and help, and refer me to 999. At this point I find myself shrieking like a banshee down the line at this man at the community alarm people. I'm ashamed about this, but seriously, what's the point of having a "help me" neck alarm if they bluddy refuse to help people?????

I call Mum's own doctors surgery and somehow they persuade a 999 triage nurse to phone us, and after some questions she decides quite quickly that yes, they'll help us out and send an ambulance, although it'll take up to an hour and blue light emergencies will take priority.

Almost 7 hours after her controlled fall, we have three lovely paramedics at the door. We leave them to it as they use a combination of gas/air, brute force and loving bullying to get her up off the floor and onto the bed. She immediately flops onto her back. They then get her back upright. She flops back over onto her back. They decide to put her in a dining room chair and hold her there whilst they assess her - they decide to take her in to A & E.

She's had lots of tests etc, but is dreadfully unhappy, mostly with me, it seems. I know this, as she refused to acknowledge me or even look at me when I went into her cubicle, even when I took her hand. After a couple of attempts which were met with tightly closed eyes and her head turned away, I just left, but not before I told the doctor working on her what's happened over the last week. She's been admitted overnight and now we'll wait to see what tomorrow brings.

Re: Behavioural issues...the "perfect" storm

Posted: Fri Jan 20, 2017 11:50 pm
by Elaine
Lois, what an absolute nightmare!
999 was the right thing to do as was the shrieking -got results didn't it?
On the few occasions my mother slid to the floor (didn't crash land) I called the ambulance who attended within a very short time, checked her over and got her up and into her chair. They said to call them was the right thing to do, it was part of their job and by all means call again if/when it happened again. To try to move her yourself is dangerous in case you exasperate any injury she may have got or hurt yourselves badly, trying.
It is horrific that the person who took your call refused.
It sounds to me as if mum was saying 'look what happens when I try to get up, look what happens when I'm on my own'. Big blackmail attempt? 'I'll make her take notice and come and look after me'. Is that possible do you think or maybe not coldly planned that way but a stubborn, almost temper driven and selfish method of getting what she wants? Obviously you are not playing the game the way she wants you to, hence the ignoring you in hospital. Perhaps she wasn't counting on a hospital admission but hoping that you would move in to care for her. The first roll onto the carpet may have frightened and also angered her as she has suddenly realised that she can't manage any more as she used to so she's not doing anything. Wants it all done for her and what's more by YOU.
You have to make it clear that it's not going to happen. You have to become the 'adult' now and respond to mum kindly but very firmly. Set the boundaries. I will do this and this but NOT this or this, and stick to it. Just as if you were dealing with a toddler.
There are loads of things that you can get in place and if she doesn't like it then lump it as they say. An Occupational Therapist can do an assessment and provide equipment to help. Commode, raised toilet seat, grab rails, one of those long grabber sticks to pick things of the floor, walkers, a bed with rails, all sorts of stuff. It is 'on loan' and has to be returned when no longer needed but saves spending a fortune on buying it. The continence nurse can suggest products which she can get on prescription and of course Social Services and carers.
Hospital might well be the best place right now and you should refuse to have her at home until a package of care and equipment is in place. If you don't make stand and change roles from the Care giver to the care organiser you are going to be overwhelmed with it all.
My mum luckily accepted carers and any equipment but she was as stubborn as ---- as well and refused to go out of her home. Luckily too, she was appreciative and co-operative. Lived to be almost 100.!!!

Re: Behavioural issues...the "perfect" storm

Posted: Fri Jan 20, 2017 11:54 pm
by jenny lucas
Don't accept her home again! She clearly and OBVIOUSLY cannot continue as she was, and to be frank, it sounds like she needs now to be in a care home.

I can't but think there is mental impairment going on here - this is NOT 'rational' behaviour by any standards!

Tell the hospital you can no longer have any care or responsibility for her, emphasise your own considerable disabilities/ill health, and basically 'hand her over' to the NHS/SS.

They will possibly desperately try to discharage her to get her out of a hospital bed, but keep saying no.

You could even change the locks on the door of her house, and certainly ensure she doesn't have a key in her possession. One forum member here had to do this when the hospital kept trying to return her mum who, like yours, could clearly no longer live independently, even with a care package.

In the meantime, have as good a night's rest and sleep as possible after the utterly LUDICROUS fiasco that this evening was - I've never heard of such nonsense - and I assume it just goes to show how utterly over-stretched the NHS is at the moment. At least the paramedics made the right call to take her into A&E - thank goodness!

Re: Behavioural issues...the "perfect" storm

Posted: Sat Jan 21, 2017 10:50 am
by Lo_1701
You're both spot on. She's an expert in emotional blackmail. When Sandi found her yesterday morning, the voice was weak and dramatic....as soon as she saw it was Sandi, and not me, she was "oh, it's you! " and brightened up. Sandi's a nurse....she's impervious to the whining.

I spoke to Sandi at 10pm last night and she said Mum had told her she hadn't had a bowel movement since Thursdya past....Thursday 12th. She didn't tell anyone this until yesterday, and I don't know if she told the hospital. Apparently she had laxatives in the house, but they were out of date, and despite the three of us being in at least once a day each, she never asked us to get her more. The pharmacy is directly opposite her house. Hospital now knows and will add it to her notes. I suspect they'll need dynamite now....

I've asked for a psychological assessment, and told them about her refusing to help herself, to eat or drink or follow the advice her doctor has given her, etc. They had first hand experience - they wanted a urine sample so needed her to get onto the commode. She refused to bear any of her own weight and forced two nurses to physically lift her out of bed and onto it. She wouldn't move her feet when they asked her to, to get her sat down on it. Nothing. She was just a dead weight. She was walking around her house normally on Thursday 12th and now, it seems she's paralysed.

We've all agreed she's not coming home to the way things have been. We might try a home care system but I doubt she'll co-operate so she'll have to go into a home where they can keep her safe, fed, hydrated and clean. It's all come to a head so suddenly, and I can't help but feel she somehow gets a kick out of "being ill". It's like the old Spike Milligan gravestone engraving...."See, I TOLD you I was sick".

I've made an official complaint to both the Scottish Ambulance Service and our local authority, who operate the Community Alarm system. I understand to a degree the ambulance position - she wasn't hurt, and I'd hate to think her sore back meant someone didn't survive a heart attack or stroke (in fact, I'd never forgive her for that). However, the council..........they're on a hiding to nothing. I'm FURIOUS with them. They failed us, completely. They knowingly left an 84 year old lying on a cold floor for an extra three hours.

Re: Behavioural issues...the "perfect" storm

Posted: Sat Jan 21, 2017 12:07 pm
by Irene_1509
That's absolutely shocking. I can't believe the ambulance service refused to come out. How could they possibly know there wasn't something seriously wrong with your mum! I have had to call out our emergency carers many times to lift my husband up after he has fallen, but onthinking back, although he can't get back up, once they have him on his feet, he is able to shuffle back to bed with help from them, so I suppose I can see their point in refusing to turn out if she wasn't able to stand but phoning 999 should definitely have had a result from them. I would put in a complaint right away.

Re: Behavioural issues...the "perfect" storm

Posted: Sat Jan 21, 2017 12:28 pm
by bowlingbun
One of my friends has a very senior role within the ambulance service. When I told him how kind his staff always were when called out after mum had a fall, he said it was absolutely no trouble at all, that it was part of their role in the community.