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Carers UK Forum • Confused about Agoraphobia
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Confused about Agoraphobia

Posted: Mon Jun 24, 2019 4:44 pm
by Sall the Bibliophile
I've looked at NHS online but none of the physical symptoms match, so please bare with me whilst I explain.

Nan is 87, she has wet macular degeneration in her right eye leaving little to no sight, dry macular degeneration and a cataract in the left eye {we are seeking treatment on the cataract} so little sight in the left eye. Limited physical mobility but can walk short distances if forced. I have a wheelchair for her so that's not really an issue beyond me wanting to keep her walking as much as possible because of her weight she won't be easy to hoist. She's lucky and has a nice garden {I'm very lucky my cousin is willing to do the garden and keep it accessible for her, paid of course but if it means fresh air I'm happy to pay}and it was her idea to get a gardener who would keep the garden accessible to her, lives in a nice area and for the most part her neighbours are great.

All that aside she will not leave the house, it's too hot, too cold, too windy, not enough wind, too cloudy, not cloudy enough, the neighbours can see her, the hedge is not trimmed, the hedge is trimmed...you name it and she has an excuse. She is perfectly capable of walking outside and sitting for 20mins but it's impossible. She will only go to the Dr's if I threaten an ambulance and hospital admission as the alternative. All this makes me consider agoraphobia BUT and it's a big but....she will voluntarily leave the house for Bingo once a month! I'm just not sure if she voluntarily leaves the house for bingo she can be agoraphobic.

I admit the neighbours are nosey and by nosey I mean will spend 40mins walking around their vehicle looking in our {now net curtained} window. They spend a considerable amount of time looking across the back of Nan's property too but there is a nice piece of garden they cannot see so there's no excuse really. I had considered a Gazebo but I'm just not sure...I suppose I'm just running out of ideas to outweigh the excuses.

Is it worth me continuing with this fight? I think a change of scenery and some air would do both of us good {I'm starting to feel like a caged animal, despite an arrangement for carers so I can do the shopping, get out etc they won't send anyone who keeps her safe, they keep moving furniture for her to bump into and fall over...she's on the heavy side and getting her up is, well I can't do it myself and she refuses to let any emergency services touch her as she's afraid they will take her to hospital. That's my fault as her health started to decline I was working three/four jobs and trying to care for her, her heart was stopping and she needed frequent resuscitation and I just couldn't cope so when a GP visited and it happened to be the father of one of the kids I was at school with I admitted I wasn't coping so he admitted her to hospital for tests and to give me a break...they kept her for almost 2months and wouldn't let her home without adaptions to the house, this was almost 20years ago but she clearly hasn't forgotten it} but convincing her is not going to be easy.

I'm sorry I'm rambling and I'm not sure that anyone can help but I guess there is always hope. I just hope I'm not taking up your valuable time for nothing.

Re: Confused about Agoraphobia

Posted: Mon Jun 24, 2019 10:46 pm
by MrsAverage
It's not unusual for the very elderly to start to want to do less and less. Everything begins to be an effort and they often chose not to make that effort.
If Nan doesn't what a change of scenery and/or fresh air then so be it. BUT that should not stop you having and doing what you need. You need a change of scene and fresh air, preferably daily.
You also need time to yourself, time away from caring.

What other help do you get with Nan? Any siblings help out at all, or paid carers?
As her needs will increase, you won't be able to do 24/7 all by yourself.

Re: Confused about Agoraphobia

Posted: Tue Jun 25, 2019 10:38 am
by Sall the Bibliophile
We used to pay for carers but financially it stopped being viable when my Mum died...she left us with debt that had been accrued in our names unbeknown to us. It was too stressful for nan {sudden death of mum, her daughter} to even discuss the option of trying to say it was fraud so I caved and after three years paid it off. We couldn't keep up the payment on carers and had a financial assessment and it was decided we could have 45mins a day five days a week and we wouldn't have to pay....big relief as at £28.50 per hour it was well out of our reach otherwise. I didn't feel comfortable asking them to just be there "incase" Nan needed a drink etc so we kept it going as the shower {which is what we originally paid for and it means Nan can have a fraction more dignity than me doing it}

When this started I would attend lipreading classes however they changed location and is no longer part funded and at £90 per seven weeks plus travel it's not financially viable plus it's just too early a start to get Nan up and I'm too exhausted to enjoy it. I took a National Trust membership instead {£70 per year instead of £300plus for lipreading} and was enjoying it, however I am banging my head against the wall with the carers, no actually that would get more sense. The care agency we use has the best inspection rating and talking to others in the area is the best agency and for that reason Social Services are reluctant to change us. However, I don't believe they have adequate training in visual impairment/blindness. It's silly things like moving furniture so Nan bumps into it and falls, not putting the lid back on shampoos etc so when alone in the bathroom there easily knocked off and of course then it runs/drips everywhere making the floor a slip and fall hazard, being able to recognise their voice so she feels safe with them or at least telling me so I can be around to reassure but there is no communication at all and I've had to tell Nan to not call the police when someone knocks on the door but try me first and I'll see if I can get back or find someone close enough to check who it is {she's had intruders twice, once a few years ago, caught and arrested by police and once a few months back they left when the "actual" carer turned up} all because they know the day I'm not there and know they should be calling anyway if things change regardless of if I'm there but it doesn't happen. I've contacted social services and their head office...head office say they'll deal with it...it takes about 3 days for it to get back to being ignored.

I am aware we are VERY low on their priority list, {I suspect it's because we don't pay privately but I can't prove it}

We live in a semi rural village {15mins max...although if the traffic lights in town are in your favour, there's no excess water/minor flooding on the roads and it's not harvest/silage or hay time 10mins},

Other clients have time critical medication {so do we but apparently Nan can just miss them if it clashes with a carer visit}, they don't allow their carers to drive outside of towns if it's icy/snowing {I cancel anything where the roads may be a risk I'm not that selfish but if I can drive on Ice I don't see why they can't! I know for a fact I live across the street from 1 carer {we moved in to the area at the same time} and I know there are at least 1 other carer who lives a couple streets away from me and another two a 10min walk but have since been made into office staff},

In town clients must take priority as this keeps travelling to a minimum

There are carers who will not travel ruraly so if it's a travelling carers day off there may not be a carer who will want to come to us {quite honestly it's a fairly small town the local one with little to no, well the only shops are a butchers and tesco and homebargains so just about everyone/everything involves travel and since when did you get a choice with your job how far you went etc?}

To be honest the list just goes on and on of fairly silly reasons why we can't be guarenteed a carer or a time etc let alone one Nan will feel safe with since her last one went on Maternity leave.

Shopping is my bug bare at the moment as I can't get out to do it...the butcher just happens to be a family friend {he was married to a very close family friends daughter} and kindly not only delivered from the butchers as I was struggling {at no charge but came back the next day too with things I'd forgotten} I'm luckily enough to drive past Tesco on the way to Nan's twice a day {I aim to leave by 8am the absolute latest but have found myself oversleeping this last week despite various alarm methods, and leave Nan's once she's in bed {at the moment she's safe over night} at around 9.20pm, I try to get straight home for bed with possibly a little time to read or clean up but I do have to check in on Dad and check through his post {he's severely dyslexic with no partner so I do that}. It's marginally easier now he has an "on the books" job because no paperwork, accounts, tax etc for me to do BUT that also means he can't just say I'm not working tomorrow and have the day to help me out {it's not his mother and honestly he has his hands more than full with his parents but in the past has said no to agency lorry driving and worked from home {mechanic} to help} I have no siblings, Nan's sister and her children {3 of them} are close as in a street away but are no help whatsoever, her {retired} nephew is the gardener but in order for him to do that I have to then watch his 8yr old grandson whom he's got custody of as well as Nan. That in itself is not too bad because I put the Wii on and they seem to entertain each other, they play bowling or car racing together which is nice. That is the only help I get though.

I tried online shopping Sainsbury was the best...they actually deliver to the door with no time constraint {asda has 3mins from van to door, I can barely get the door open by the time he's leaving as he's run out of delivery time}, Tesco inform me the length of the path to the door means they deliver to the gate {more ridiculous excuses}, however lately sainsbury seem to be delivering random things rather than my shopping list even with no substitutes selected and turn up at least an hour early without notice meaning I can't even pop out for prescriptions. None of the others deliver in our area. I try to do most things before Nan is up, she doesn't like to be up before 9am so I try to run to a market for fruit/veg and tesco etc whilst she's in bed {early start for me but most practical as long as I don't over sleep, I'm deaf/hearing impaired so tend to be more exhausted if I'm had to make phone calls or listen to important things I can't miss anything of, or "guess" at missing words like hospital apts or phoning the care agency like last week so just starting to feel less tired and more with it this week as I catch up on the extra sleep needed to recover}.

Post Office I use to do when a carer came in, I can just about do that in 45mins, same with the butchers normally and it gets me out and I see people to speak too. I hadn't realised how much I needed and enjoyed it until I didn't have it.

Hmm I think that's everything...Oh but Nan has a sleep in the chair in the afternoon, I try to avoid it being longer than an hour or she's awake at night and calling me back because she can't find anything to watch/listen to on tv and quite frankly I need some sleep or that's how I justify it.

Thank you for replying I didn't really expect much to come from it but I wanted to be sure I wasn't missing something important if that makes sense?