Can I ... Should I?

Sam Luvit

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Oct 19, 2016
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East Sussex
Don’t you just hate delayed flights @Amy in the US .. so frustrating. Once I’m sitting on the plane all my troubles just roll away, but fidgeting in departures just winds me up. Hope you get a boarding call soon & a turbulence free flight.

I’m trying to take on board what you are all saying, it is hard, but if I can manage to see it as the disease & not as wilful, maybe I can handle it. I just feel pretty fragile myself right now, so it’s really hard to keep calm. It does look wilful. It is very much her “old Mum” way. I guess the fact that she used to twist things to suit herself is making it hard for me to accept that maybe it’s the disease & not her reverting to her old ways.

I know you’re not wishing further decline just to make it easier. It’s no fun getting old, but the alternative ain’t too great either, springs to mind.

I’m tough really. I’ve cracked once before, so I recognise the symptoms. In any other circumstances I could walk away, hand back some responsibilities or work load, but I can’t with this. I think that’s why I just booked the holiday, nothing in place, just booked it. I know I have to get some space. Mum will have to manage with brother, eldest, cleaner, neighbour & support worker. It’s that or no me in a month or whenever.

Apparently it’s the weekend. We are expecting snow. I’m going to binge watch rubbish TV & recuperate :)
 

Amy in the US

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Feb 28, 2015
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Sam, I also recognize the "get better" comments. I used to hear a lot about that. I just need to get over this (cold, infection, thyroid problem, medication change) and then I'll get better. I just need to get through this (day, appointment, errand, chore, event), and then I'll be better. She would say those things a lot. I don't know how much, if any, awareness my mother had, that something else, was not right. She definitely hasn't had insight into her condition, for several years now. I know the lack of insight and awareness is horrible in and of itself, but my mother would be so distraught if she knew she has Alzheimer's, so it's a blessing in her case.

I hope the family time this weekend is a help, and enjoyable, not stressful.
 

Amy in the US

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Feb 28, 2015
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Snow! Not more snow. Doesn't the weather know it's time for SPRING???

Mind you, it was 23 F when we left the house this morning. That's…negative five in Celsius. This isn't going to be a balmy visit to New York, although it should warm up during the day. I'm well prepared with layers, lots of layers.

I hope you don't get bad weather. Ugh.
 

love.dad.but..

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Jan 16, 2014
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Don’t you just hate delayed flights @Amy in the US .. so frustrating. Once I’m sitting on the plane all my troubles just roll away, but fidgeting in departures just winds me up. Hope you get a boarding call soon & a turbulence free flight.

I’m trying to take on board what you are all saying, it is hard, but if I can manage to see it as the disease & not as wilful, maybe I can handle it. I just feel pretty fragile myself right now, so it’s really hard to keep calm. It does look wilful. It is very much her “old Mum” way. I guess the fact that she used to twist things to suit herself is making it hard for me to accept that maybe it’s the disease & not her reverting to her old ways.

I know you’re not wishing further decline just to make it easier. It’s no fun getting old, but the alternative ain’t too great either, springs to mind.

I’m tough really. I’ve cracked once before, so I recognise the symptoms. In any other circumstances I could walk away, hand back some responsibilities or work load, but I can’t with this. I think that’s why I just booked the holiday, nothing in place, just booked it. I know I have to get some space. Mum will have to manage with brother, eldest, cleaner, neighbour & support worker. It’s that or no me in a month or whenever.

Apparently it’s the weekend. We are expecting snow. I’m going to binge watch rubbish TV & recuperate :)
Sam Luvit..I too desperately hoped dad would decline and push through his inbetween incontinence stage when he was peeing in very inappropriate places very resistant to re directing to a toilet or help in his NH so I can totally understand. It got very close to dad being given notice by the NH in the 18 months it took. Some of his other challenges didn't unfortunately phase out. Sometimes it seems a pwd previous character amplifies during dementia however sometimes it is the opposite and the behaviour appears that a pwd never displayed. Just as pwd are all different so are we as carers, but we all try our best with as much patience, tolerance and understanding for our loved one and the illness as we can muster, at times this is possible and we take things in our stride but often we ourselves feel at rock bottom because caring takes its toll. I learnt strategies in a trial and error way with my dad as I went along...some days they worked other days for no apparent reason the
same strategy failed and often I could never work out why except for the unpredictability of dad in any one day, hour or even sentence!

A holiday which isn't now far away will give you respite mentally and physically.
 

Norfolk Cherry

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Feb 17, 2018
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Sam, I also recognize the "get better" comments. I used to hear a lot about that. I just need to get over this (cold, infection, thyroid problem, medication change) and then I'll get better. I just need to get through this (day, appointment, errand, chore, event), and then I'll be better. She would say those things a lot. I don't know how much, if any, awareness my mother had, that something else, was not right. She definitely hasn't had insight into her condition, for several years now. I know the lack of insight and awareness is horrible in and of itself, but my mother would be so distraught if she knew she has Alzheimer's, so it's a blessing in her case.

I hope the family time this weekend is a help, and enjoyable, not stressful.
Don’t you just hate delayed flights @Amy in the US .. so frustrating. Once I’m sitting on the plane all my troubles just roll away, but fidgeting in departures just winds me up. Hope you get a boarding call soon & a turbulence free flight.

I’m trying to take on board what you are all saying, it is hard, but if I can manage to see it as the disease & not as wilful, maybe I can handle it. I just feel pretty fragile myself right now, so it’s really hard to keep calm. It does look wilful. It is very much her “old Mum” way. I guess the fact that she used to twist things to suit herself is making it hard for me to accept that maybe it’s the disease & not her reverting to her old ways.

I know you’re not wishing further decline just to make it easier. It’s no fun getting old, but the alternative ain’t too great either, springs to mind.

I’m tough really. I’ve cracked once before, so I recognise the symptoms. In any other circumstances I could walk away, hand back some responsibilities or work load, but I can’t with this. I think that’s why I just booked the holiday, nothing in place, just booked it. I know I have to get some space. Mum will have to manage with brother, eldest, cleaner, neighbour & support worker. It’s that or no me in a month or whenever.

Apparently it’s the weekend. We are expecting snow. I’m going to binge watch rubbish TV & recuperate :)
 

Norfolk Cherry

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Feb 17, 2018
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Hi Sam and AmyUS, I hope it's Ok to join in your thread as it helps me listen in to your chat! I get what Sam is saying. My mum sometimes says things like "you've got to enjoy yourself whilst you can. We made the most of it !" Well they did! They travelled, had a boat and caravan and really enjoyed their lives. They pretty much turned their backs on their own parents as they got older and needed help and both had broken contact with their parents by the time they died. They spent their 50's working hard and playing hard, fair enough I suppose. My mum has dementia but I definitely get the feeling she gets some satisfaction by rubbing in the fact that my life is becoming increasingly submerged in hers! I guess she's got no other source of comfort, but it is not easy! I agree with Sam, she knows what she is saying, it's so my mum! I too have booked a holiday in May, and am hoping the 3 visits a day, plus a few extra ones, the alarm, plus my daughters from afar is going to work! She got so anxious having builders in for 2 weeks, I'm convinced she will find the change of respite in a care home overwhelming. The more stability and routine, the calmer she is. The trouble is the mixed feelings I have of utter frustration looking after someone who was unable really to look after me (other than providing a home), and compassion for what is my mum. I can't walk away, but I will go under if I don't have a holiday! All the best to you with your own struggles.
 

Sam Luvit

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Oct 19, 2016
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East Sussex
Hi @Amy in the US

Hopefully you are well on your way to NY & your cold is not bothering you too much. I’m getting excited for you, but not for me lol.

If Mum isn’t saying she will get better, she’s telling me she is much better. It’s such a little thing, but it is sooooo irritating. Pribably because each time she says it, I’m reminded that she won’t get better. Talking this out is making me examine reasons (or as much as can be applied to Alzheimer’s) & that helps me get my own thoughts into some sort of order. Can’t do much about mums thought process, but I can at least have a go with my own.

The snow expected on Sunday has morphed into Saturday, we are expecting a drop in temperature tonight with rain & snow from about 05.00. I may well wake to a white world. It’s an excellent excuse to stay indoors :cool:

I too hope the family visits will be peaceful but only time will tell :rolleyes:
 

Sam Luvit

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Oct 19, 2016
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East Sussex
Evening @love.dad.but..

So far, now Mum is back on the meds, her continence issue seems to be more or less sorted. She has a touch of stress incontinence, so a small pad, but I have had to suggest that needs changing more than morning & night. I was very non commital about it, casually mentioning it as she went up to the loo a few days ago. That whiff has gone now, so I think she’s doing that.

I was managing (mostly) up to the stroke. Now I feel like a drowning man in 20 foot waves. I’ve gone back to calm talking, walking away & more exercise today. It’s better. Mind you, I’ve not been out the house either. Thinking about it, her stroppy etc attitude seems to be when she’s left alone. Hope that doesn’t mean she will be a nightmare while I’m away. Oh well, time will tell.

I really must do something about this holiday. Find the email. Enter passenger details, maybe even book a seat & print off boarding cards lol
 

Sam Luvit

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Oct 19, 2016
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East Sussex
[@Amy in the US I have cheated, told eldest he can get the train over, I don’t fancy his hill in the snow on a Sunday. It won’t be gritted & it’s a tad steep

I don’t think the English weather really cares. We had snow over Easter one year. Family holiday, dad steering the canal boat, we handed out mugs of tea & closed the latch :D

Layers are the order of the day for cold snaps. The Canadians wear two shirts or at least that’s what they told dad when he visited his cousins.
 

Sam Luvit

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Oct 19, 2016
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East Sussex
Hi @Norfolk Cherry

Join right in, pull up a chair & get comfy. There is something about reading that someone else is seeing the same things in their PWD as you are. It takes away some of the isolation.

My parents also worked hard & once they retired, they were off on holiday all the time. Somehow they fitted in 2 holidays abroad even when working, so retired, it was like they were always going somewhere. Dads comment was, they earn it, they wouId spend it. If we wanted something, go earn it. I watched my friends get given cars, taken on holiday, helped out with furnishing new homes etc, I bought my own car lol

Stability seems to be the key. It does feel like you sort ine anxiety & another appears though. Got the dementia clock (click/flock/frock...), so she knows what the blooming day is, but now she says she’s broke. I wish I was that broke lol

Yup. Mixed feelings are about right. Not a maternal bone in mums body. Not a one. So, I find looking after her when she’s being a bit difficult (!!), really hard work. I want to scream at the unfairness of it. Why am I soothing her fears, when she didn’t do it for us. But, I couldn’t walk away. I tried missing a weekend visit, but I just stressed the whole time. I had a few years of her being ok & 2 years of feeling like I had a Mum. It’s not enough to sustain me when she’s being horrid.

I think I’d have agreed to Outer Mongolia if it had been suggested. I just needed to know I couid walk out the door & ignore dementia for a week. Enjoy yours when it comes. Are you going with friends?
 

Norfolk Cherry

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Feb 17, 2018
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Hi @Norfolk Cherry

Join right in, pull up a chair & get comfy. There is something about reading that someone else is seeing the same things in their PWD as you are. It takes away some of the isolation.

My parents also worked hard & once they retired, they were off on holiday all the time. Somehow they fitted in 2 holidays abroad even when working, so retired, it was like they were always going somewhere. Dads comment was, they earn it, they wouId spend it. If we wanted something, go earn it. I watched my friends get given cars, taken on holiday, helped out with furnishing new homes etc, I bought my own car lol

Stability seems to be the key. It does feel like you sort ine anxiety & another appears though. Got the dementia clock (click/flock/frock...), so she knows what the blooming day is, but now she says she’s broke. I wish I was that broke lol

Yup. Mixed feelings are about right. Not a maternal bone in mums body. Not a one. So, I find looking after her when she’s being a bit difficult (!!), really hard work. I want to scream at the unfairness of it. Why am I soothing her fears, when she didn’t do it for us. But, I couldn’t walk away. I tried missing a weekend visit, but I just stressed the whole time. I had a few years of her being ok & 2 years of feeling like I had a Mum. It’s not enough to sustain me when she’s being horrid.

I think I’d have agreed to Outer Mongolia if it had been suggested. I just needed to know I couid walk out the door & ignore dementia for a week. Enjoy yours when it comes. Are you going with friends?
No, I'm going with my husband Steve. We are going back to a place called Dalyan in Turkey where we used to go with our children. It's got a protected beech with turtles and lakes and rivers so you get to go on boats at sea and on the river. Very peaceful and hopefully we will see wildlife.They have storks. And you can fly from our local airport 20" in a taxi-big advantage from Steve's view. I just went round mum's and she hadn't eaten dinner. Am having probs with carers. They ask if she wants lunch/dinner ,she says no, I'll make it later, so they make her a cup of tea? Great. That's going to work! Have talked to all of them, but they don't get dementia. Just not trained properly and on low pay etc. Am going to explain in letter to manager and ask her to read it out to them at their meeting, and will offer to come. If they just heat dinner in microwave and put it on table, she will eat it. That's what I do, she's fine and will go along with it! ! Like you say, sort out one problem and another pops up. I go from chilled out to high anxiety in 60 seconds. Our parents sound very similar! The mantra was "sink or swim!" "Look after number one!" Well if I applied that to my mum now, she would be well sunk! Oh, we need a break, she's been in my head on a daily basis since 2010 and I want her out of there so I can breathe!. Here's to our holiday! But will we come back? I am laughing, it's just too awful.
 

Sam Luvit

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Oct 19, 2016
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East Sussex
Hi @Norfolk Cherry

I have an awful outgoing trip to get to the airport. Coming back is a straightforward train journey, but using Luton knocked the price down by £200, so I’ll get over it. I’d rather have a trying trip & more for the bar lol

Your holiday destination sounds perfect. I’m just looking forward to sleep. Reading without being interrupted all the time & a week without the blooming washing machine. It’s crazy how our lives change so much

Carers who don’t understand dementia just astound me. Seriously, a min of 25% will have Alzheimer’s & if an elderly person needs care, you gotta figure they are likely to have some sort of dementia. It just beggars belief. I had that conversation with one silly girl. She actually sat reading through the book & telling me it didn’t mention Alzheimers so was I sure???

Of course your Mum will say no to food, she will do it later. They all do. Plonk the food in front of them, preferably sit down for a few minutes & they dig right in. I swear I feel like a blooming trainer half the time. Rattling off what they need to do .... don’t rush her, don’t remind her of what you can’t do (the dreaded cream) blah blah blah. Oh for trained staff. It was just as bad in hospital, I was telling trained nurses how to deal with Alzheimers, blooming ridiculous

I’m really trying to be calm. Although this evening is proving tough. Mums strop of yesterday meant she had 2 days of Emerdale to get through. She can’t / won’t use the remote, so I had to keep going in, fast forward through the ads, back out of each episode & start the next one .... uggghhh. Then, as it finally finished, she asks if I’m going to take pooch out. Always on about what I’ve not done :-(

I have said I’m going to look for work while there lol. If I don’t post after April, I’ve given in & decided to be a beach b**
 

love.dad.but..

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Jan 16, 2014
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No, I'm going with my husband Steve. We are going back to a place called Dalyan in Turkey where we used to go with our children. It's got a protected beech with turtles and lakes and rivers so you get to go on boats at sea and on the river. Very peaceful and hopefully we will see wildlife.They have storks. And you can fly from our local airport 20" in a taxi-big advantage from Steve's view. I just went round mum's and she hadn't eaten dinner. Am having probs with carers. They ask if she wants lunch/dinner ,she says no, I'll make it later, so they make her a cup of tea? Great. That's going to work! Have talked to all of them, but they don't get dementia. Just not trained properly and on low pay etc. Am going to explain in letter to manager and ask her to read it out to them at their meeting, and will offer to come. If they just heat dinner in microwave and put it on table, she will eat it. That's what I do, she's fine and will go along with it! ! Like you say, sort out one problem and another pops up. I go from chilled out to high anxiety in 60 seconds. Our parents sound very similar! The mantra was "sink or swim!" "Look after number one!" Well if I applied that to my mum now, she would be well sunk! Oh, we need a break, she's been in my head on a daily basis since 2010 and I want her out of there so I can breathe!. Here's to our holiday! But will we come back? I am laughing, it's just too awful.
I had a difference of opinion with a disastrous live in carer I tried for dad. Everything provided food wise for decent dinners...arrived one day and asked what she cooked for dinner last night...she replied that dad couldn't say what he wanted so she made him a sandwich! He was already at the stage which if she had been experienced in dementia would have known...that he couldn't ask for anything and he wouldn't know whether he wanted to eat a chicken or a shoe and certainly needed the food in front of him to realise he was hungry! That prompted a dreadful 2 hours of her ranting at me like a teenager up and down to her room and ended with me phoning the agency to remove her immediately!
 

Norfolk Cherry

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Feb 17, 2018
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I had a difference of opinion with a disastrous live in carer I tried for dad. Everything provided food wise for decent dinners...arrived one day and asked what she cooked for dinner last night...she replied that dad couldn't say what he wanted so she made him a sandwich! He was already at the stage which if she had been experienced in dementia would have known...that he couldn't ask for anything and he wouldn't know whether he wanted to eat a chicken or a shoe and certainly needed the food in front of him to realise he was hungry! That prompted a dreadful 2 hours of her ranting at me like a teenager up and down to her room and ended with me phoning the agency to remove her immediately!
Oh no, that sounds bad. I do find it odd when I'm trying to explain how dementia affects my mum and they argue back? It's not difficult to understand. It's basically brain damage and you have to ease the person towards doing what's in their best interests rather than giving them a choice. Actually I think it's to do with lack of proper education and training by the companies which is expensive. The carers are not trained mental health nurses to be fair.
At least your trip is better coming back than going! I love the description of catching up with Emmerdale. Why do even our leisure pursuits become so charged with tension!! We are watching The Crown on netfix. Big success. Except every 5" "well she doesn't look like the Queen?"
She also keeps asking me who the various past Royals are, and as I'm not a big fan, I don't actually know. So I've got to print off a timeline..I hope you have an amazing rest and recharge your batteries. I'm not actually living with my mum, and although I see her every day, and ring her, at least I get to shut the door and have time out. I'm giving up work in July too. I take my hat off to you living with your mum, and anyone else reading this in the same situation. I'll end up doing it myself I guess, but not sure how long I could sustain it. It's already putting huge pressure on our relationship. Good to chat and let go of all of this mum stuff!
 

Norfolk Cherry

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Feb 17, 2018
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I had a difference of opinion with a disastrous live in carer I tried for dad. Everything provided food wise for decent dinners...arrived one day and asked what she cooked for dinner last night...she replied that dad couldn't say what he wanted so she made him a sandwich! He was already at the stage which if she had been experienced in dementia would have known...that he couldn't ask for anything and he wouldn't know whether he wanted to eat a chicken or a shoe and certainly needed the food in front of him to realise he was hungry! That prompted a dreadful 2 hours of her ranting at me like a teenager up and down to her room and ended with me phoning the agency to remove her immediately!
Haha, this is so awful! I get the bit about your dad not knowing what he wants, it's so sad. It's just not right that our most vulnerable people are cared for by the lowest paid, least trained workers?
Nightmare.
 

Sam Luvit

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Oct 19, 2016
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East Sussex
I don’t give Mum a choice @love.dad.but.. I just cook & serve. I might suggest something, but it’s more along the lines if “I’m cooking this, will you join me”. When we go out I order for her, or suggest what she likes, only one choice. Max 3 options if she doesn’t want it. She’s mostly accepting of that.

I love that, chicken or shoe ... might offer those as alternatives.

If I try something new, I tell her not to eat it if she doesn’t like it. Fortunately she seems to like my cooking. My lack of weight loss couid be coz I do too :D

I wouldn’t have made it for 20 minutes, she’d have been out that door. 2 hours, you have more patience than I have.
 

Sam Luvit

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Oct 19, 2016
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East Sussex
Hi @Norfolk Cherry

I get that the average (ducking now), Carer might not be trained, but these support workers are supposed to be a level of 3 above that. They are working with stroke victims. When I tell them mums memory is less than 48 hours they are visibly shocked. They want to argue with me, they get both barrels. I’m with her 24/7, I think I know what I’m talking about. She dies not remember what happened the day before yesterday. Some of them are sceptical but I’m beyond their criticsm. I’ve had the, I’m so tired, or so glad it’s the weekend. I just tell them how lucky they are, go home shut the door, try 10 weeks without a day off. Try 3 years with the occasional night away. They soon shut their traps.

It’s Mum that watches Emerdale, it’s not my thing at all. I was trying to relax, but had to keep going in to sort it out for her. I ended up surfing FB as couldn’t get into anything with the continual interruptions. If I give her the remote, she tries changing channel, then I end up retuning everything. I try to tune her out if we are watching a film. She keeps muttering. A good thriller with lots of fighting & she’s ok, a drama with any human interest / emotion, she just nags that it doesn’t make sense.

I’d think long & hard about moving in with or moving her in with you. It’s not easy. I’m not sure I’d have done it if I’d known what I know now. Parenting your parent is all wrong, it’s upside down thinking. No other bleep gets it & plenty of your friends & relatives will be all too happy to offer suggestions (that do not work), but don’t offer or agree to actually turn up & do anything

I think it’s the loneliest thing you can do. Friends disappear & you find you have to live in their world in their time zone. Life just passes you by & it can be very frustrating
 

Sam Luvit

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Oct 19, 2016
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East Sussex
...it's so sad. It's just not right that our most vulnerable people are cared for by the lowest paid, least trained ...

I have thought of offering a training session so they get an idea of what works lol

I have no medical training, but I read & learn as much as I can. There is a certain level of “I’m trained, you're nothing” attitude among some carers that makes me want to kick them out the door
 

Sam Luvit

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Oct 19, 2016
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East Sussex
Bit of excitement round here tonight, not from Mum for a change ...

I took pooch out for his last walk. Heard a helicopter & did wonder what was going on. It passed over me 3 or 4 times. I thought they must be looking for someone, or maybe drug growing lofts.

Came home & found there has been a double shooting & the police were looking for the gunman!!! Seems they have shut the road, armed police & everything, 1/2 a mile from us.

Arrest has now been made. So it’s ok. But it did make me think. They must have taken a good look at me, walking a little dog & carrying a bag of poop lol