Today was the day for nail trimming/cutting/filing. Not mine, but Mum's.
Today was also the day I finally finished my response to Social Work's review document. I wonder how it will be received since it is full of criticisms. I have no idea how anyone can send out such an official document which is so full of spelling mistakes, the kind which a spell check would easily pick up. Anyway, we shall see what happens next. Quite frankly, to be told, in the social work review documentation that they will work to prevent any further deterioration in Mum's condition is either laughable, pathetic or terrifying since Parkinson's is a degenerative condition which the medical profession cannot halt or cure, what is Social Work going to do?
Today's also been a day when the shamanic realms have been leaking through into every day life. I have no idea what is going on, I just know that concentration and focus has been extremely hard to come by today. I've been distracted and flitting about like a butterfly on speed. It's uncomfy, to say the least.
So, Mum asks this morning if I would please cut her nails. Easy enough, you'd think. Until you try getting a file or clippers onto a fingernail which is almost vibrating in its intensity of shaking. Or you try to uncurl the clenched fist to get at the nails which are digging into the palm of her hand. It hurts her to have someone try to unroll her fingers. I have to work fast, not just because of her shakes but because I have to bend over the bed (even when it is raised to it's full height, I still have to bend) and that irritates the hell out my back muscles and my spine.
However, we got there, with only one spasm, one "ouch" and no blood! So now all her nails are neatly filed down as far as I can get them. And she feels comfy again. Interestingly, her toenails don't seem to be growing as fast as her fingernails.
Sunday, 31 May 2015
Thursday, 28 May 2015
The Art Factor
Many years ago I heard someone talking about Art Therapy in the treatment of people with depression. I didn't understand it then, but I'm not one who draws. Then, a few years back, not long after I was fist diagnosed with this chronic condition, I decided to try paint by numbers because some of the adult ones are so very good, incredibly intricate, you could almost believe you were doing a "proper" painting. And that's when I realised what Art Therapy was about. It's about focus, about slowing down, about pausing - because if you don't focus, don't slow down and pause sometimes what you end up with is a mess. But if you do focus, slow down and pause what you come away with is something quite beautiful.
It was something I'd do at 4 or 5 in the morning, in winter, because it was quiet and it was productive. Then next door's security light started to malfunction and it would blink on and off during all the hours of darkness so I gave up.
Now I doing pencil drawings, or rather I colour them in. I still don't think I could compose a picture of my own - apart from a house or a glaciated valley - because I've never convinced myself to keep trying, to keep attempting the perspective required. But, even using pencils, it's still enough to slow me down when life gets on top of me. Plus it's easier to carry around than a paint by number kit :)
It was something I'd do at 4 or 5 in the morning, in winter, because it was quiet and it was productive. Then next door's security light started to malfunction and it would blink on and off during all the hours of darkness so I gave up.
Now I doing pencil drawings, or rather I colour them in. I still don't think I could compose a picture of my own - apart from a house or a glaciated valley - because I've never convinced myself to keep trying, to keep attempting the perspective required. But, even using pencils, it's still enough to slow me down when life gets on top of me. Plus it's easier to carry around than a paint by number kit :)
Wednesday, 27 May 2015
Well meaning, but misplaced, nebbs
Almost 2 months ago we had a "review" visit from Social Work - the price of having free personal care for Mum. Today the supposed record of that visit arrived on our door mat.
On a slightly different note, as I read through the 30+ pages, I became more and more horrified that no one had even spell-checked the document, let alone read it through. Obviously life in Social Work is far sloppier than it was in my day - and yes, I know that makes it sound like I'm a 95 year old school marm, but really. An official document . . . spell check, at the very least!
Quite a bit of the document was correct, but there were rather large gaps which had been filled by supposition. In correct supposition at that. And also rather interesting answers to questions which weren't even asked.
I love the tables on these reports - critical issue - how would my mum escape a burning house - ok, you never asked that question. There is an answer however, because I happened to ask 2 firemen who were doing door to door checks on smoke alarms and fire prevention stuff. We are less than 5 minutes from the fire station, our instructions are, in the event of a fire (anywhere other than Mum and Dad's bedroom), close their bedroom door, wet down towels and place around the door, soak the door with water, open the window (obviously after dialling 999 and reporting the incident) and await arrival of fire crews who will take out the window & take Mum out that way. If it's in their bedroom then, basically, we'd have to physically carry Mum out the room to another room to await arrival. Even if we still had a stairlift, a fire would probably cut power, rendering it useless. And, well, I could go on with various scenarios, because I've already thought them out & made contingency plans - it's part of the way my brain works. But we were never asked.
Another part is the support of the carers - I'm sorry, but if you can't offer financial support (easing my financial stress) there isn't much more you can do for me. And why has it taken you 3 years to decide to do this? But, again, it was a box on the page - not even something raised at the meeting.
There was also a slightly more worrying thing the document was the implied desire for Mum to have more social interaction. She can't go out so that would involve people coming in - firstly Mum doesn't always want company and you can't schedule that, secondly we're already at tolerance capacity for people traipsing into the house bring good will, cheer and infections.
Well meaning people but their nebbs are in the wrong place.
On a slightly different note, as I read through the 30+ pages, I became more and more horrified that no one had even spell-checked the document, let alone read it through. Obviously life in Social Work is far sloppier than it was in my day - and yes, I know that makes it sound like I'm a 95 year old school marm, but really. An official document . . . spell check, at the very least!
Quite a bit of the document was correct, but there were rather large gaps which had been filled by supposition. In correct supposition at that. And also rather interesting answers to questions which weren't even asked.
I love the tables on these reports - critical issue - how would my mum escape a burning house - ok, you never asked that question. There is an answer however, because I happened to ask 2 firemen who were doing door to door checks on smoke alarms and fire prevention stuff. We are less than 5 minutes from the fire station, our instructions are, in the event of a fire (anywhere other than Mum and Dad's bedroom), close their bedroom door, wet down towels and place around the door, soak the door with water, open the window (obviously after dialling 999 and reporting the incident) and await arrival of fire crews who will take out the window & take Mum out that way. If it's in their bedroom then, basically, we'd have to physically carry Mum out the room to another room to await arrival. Even if we still had a stairlift, a fire would probably cut power, rendering it useless. And, well, I could go on with various scenarios, because I've already thought them out & made contingency plans - it's part of the way my brain works. But we were never asked.
Another part is the support of the carers - I'm sorry, but if you can't offer financial support (easing my financial stress) there isn't much more you can do for me. And why has it taken you 3 years to decide to do this? But, again, it was a box on the page - not even something raised at the meeting.
There was also a slightly more worrying thing the document was the implied desire for Mum to have more social interaction. She can't go out so that would involve people coming in - firstly Mum doesn't always want company and you can't schedule that, secondly we're already at tolerance capacity for people traipsing into the house bring good will, cheer and infections.
Well meaning people but their nebbs are in the wrong place.
Tuesday, 26 May 2015
It's a good day!
There are just some days when things come together, not even big things, and suddenly the world's a nicer place.
First off, I managed to persuade my Guides that I needed a night off, one which involved proper sleep not gadding around on the astral carrying out tasks or attending to issues. So, that was a bonus, especially as I was late to bed last night having stayed up trying to locate a place, unmarked on a map, where my nephew may be having a day's work today. Unfortunately it is in the middle of nowhere so a bus service doesn't exist, hence my sister having to be up, showered, fed & out the door far earlier than usual. I hope they find the place. I hope the job turns out to be real, a reasonable one and one he can finally get his teeth into.
I managed to get 8 pages written last night after supper and before pills while all was quiet, mayhap the block's gone? We shall see. I also managed to finish one of my colouring in pictures - am actually quite proud. I call it Meditation Garden.
Mum had a bad night last night. A lot of dreaming, shouting, giggling, muttering. I was up four times to see if there was an actual problem or if she was just dreaming. No problems, just dreaming. Good news but somewhat tiring.
And then I found a piece of an earring I thought was gone forever.
Several months ago, I decided I needed cheering up, so I splashed out a whopping £2 on a pair of earrings. They really aren't anything spectacular, indeed, I have had comment about how tacky they are - so what? I like 'em! Anyway, the nice part, the front part, came off one of the earrings. I had no idea where I had actually lost it since I didn't notice the problem until lunchtime and I'd put the earrings on in the morning. I suppose the glue gave up, lol So all I had left was the post and butterfly. Then, this morning, there is the front part lying on the floor at the side of my bed! Whohoo! A bit of superglue and now I wait for a bit, hope the glue's taken & well set and I shall have my rather braw, if somewhat tacky,earrings back as a pair!
Time to take the clean laundry upstairs and bring today's lot down. I may just change dad's bedlinen, since I did all of Mum's sheets & blankets yesterday.
It's a good day!
First off, I managed to persuade my Guides that I needed a night off, one which involved proper sleep not gadding around on the astral carrying out tasks or attending to issues. So, that was a bonus, especially as I was late to bed last night having stayed up trying to locate a place, unmarked on a map, where my nephew may be having a day's work today. Unfortunately it is in the middle of nowhere so a bus service doesn't exist, hence my sister having to be up, showered, fed & out the door far earlier than usual. I hope they find the place. I hope the job turns out to be real, a reasonable one and one he can finally get his teeth into.
I managed to get 8 pages written last night after supper and before pills while all was quiet, mayhap the block's gone? We shall see. I also managed to finish one of my colouring in pictures - am actually quite proud. I call it Meditation Garden.
Mum had a bad night last night. A lot of dreaming, shouting, giggling, muttering. I was up four times to see if there was an actual problem or if she was just dreaming. No problems, just dreaming. Good news but somewhat tiring.
And then I found a piece of an earring I thought was gone forever.
Several months ago, I decided I needed cheering up, so I splashed out a whopping £2 on a pair of earrings. They really aren't anything spectacular, indeed, I have had comment about how tacky they are - so what? I like 'em! Anyway, the nice part, the front part, came off one of the earrings. I had no idea where I had actually lost it since I didn't notice the problem until lunchtime and I'd put the earrings on in the morning. I suppose the glue gave up, lol So all I had left was the post and butterfly. Then, this morning, there is the front part lying on the floor at the side of my bed! Whohoo! A bit of superglue and now I wait for a bit, hope the glue's taken & well set and I shall have my rather braw, if somewhat tacky,earrings back as a pair!
Time to take the clean laundry upstairs and bring today's lot down. I may just change dad's bedlinen, since I did all of Mum's sheets & blankets yesterday.
It's a good day!
Saturday, 23 May 2015
Rebel Blue
I rebelled yesterday, very quietly. So quietly in fact that I doubt anyone else noticed, aside from the fact that my rebellion resulted in a fair few exasperated looks and huffing sighs.
I think the "why" behind my rebellion is more important than the "how", it's also longer, lol. It was a stonkingly beautiful day yesterday. It was also Day 1 of the Festival of Hockey on the pitches across the path from us. So, not surprisingly, there was a fair bit of noise. Congestion resulting from people desperate to park as close to the pitches as possible, regardless of how unsafe it made it for others. I dreaded driving past those tightly packed cars, a child really could dash out from between those cars, uncaring of the potential dangers: same with dogs suddenly freed from their cars. Even at 5 or 10 mph a car could seriously damage a child or a dog. Not many of the adults seemed to understand this and that is positively frightening.
There's an encampment of travellers just beyond our road end. And they are letting their children run wild, pulling bark off trees, branches off trees, making holes in hedges, rubbish strewn everywhere - no respect. Usually there isn't an issue with travellers, but I'm not convinced these are our usual ones.
Then, of course, with good weather comes everyone else who has to enjoy the warmth and the sunshine with over loud, drunken laughter and pounding music. And yet most of our neighbours are actually quite quiet and make only everyday noise levels - odd how one or two households can be the absolute bain.
Yes, I know, I should move house. Trust me, as soon as I can, I shall be - somewhere quieter.
Mum didn't drink enough yesterday, so she was feeling sick. She wanted pandering to and, quite frankly, I had nothing to pander to her with.
And then there was the pressure - washing into machine, out of machine, onto line, off line, put away, next load; food.
So I refused to deal with the washing. I refused to cook, opting instead to use some spare housekeeping and go to the local Chinese - which suited dad (who wanted fish and chips), which suited my niece and me but not my sister. Ohhhhh the look I got when she realised she'd have to cook for herself. Did I opt for Chinese just because it would irritate my sister? Nah, I'm not that petty. I opted for Chinese because I was thinking just about myself - I wanted a chicken salad and they do a lovely chicken salad. Just so happens that being selfish tweaked the Soup Dragon's beak and I don't regret it for one minute.
So, this morning, brain said sleep, body said get up. For over an hour I had that contest rattling around in my head, eventually, just before 6 a.m. body won. But now I have the impatient dad, the piles of laundry (done & needing done) and a frustration level which is almost as high as the pain levels. Teeth are aching today, yeah, teeth - all my upper jaw teeth are aching. It's not like tooth ache cos there's no pressure or pain when I bite just a deep ache which makes me feel like all my teeth will fall out any time, but they don't. I know, because this isn't the first time I've had this. It's the death of the nerves, eventually the pain'll stop and all I have to do is wait it out.
Rebel Blue strikes today.
Rebel Blue would like to run away.
But I have to swallow it, put it down, shove it in a box because now I have to deal with the laundry, deal with the breakfasts, deal with the pills, deal with the dishes. It's not healthy, but it's the only way I can deal with it right now.
I think the "why" behind my rebellion is more important than the "how", it's also longer, lol. It was a stonkingly beautiful day yesterday. It was also Day 1 of the Festival of Hockey on the pitches across the path from us. So, not surprisingly, there was a fair bit of noise. Congestion resulting from people desperate to park as close to the pitches as possible, regardless of how unsafe it made it for others. I dreaded driving past those tightly packed cars, a child really could dash out from between those cars, uncaring of the potential dangers: same with dogs suddenly freed from their cars. Even at 5 or 10 mph a car could seriously damage a child or a dog. Not many of the adults seemed to understand this and that is positively frightening.
There's an encampment of travellers just beyond our road end. And they are letting their children run wild, pulling bark off trees, branches off trees, making holes in hedges, rubbish strewn everywhere - no respect. Usually there isn't an issue with travellers, but I'm not convinced these are our usual ones.
Then, of course, with good weather comes everyone else who has to enjoy the warmth and the sunshine with over loud, drunken laughter and pounding music. And yet most of our neighbours are actually quite quiet and make only everyday noise levels - odd how one or two households can be the absolute bain.
Yes, I know, I should move house. Trust me, as soon as I can, I shall be - somewhere quieter.
Mum didn't drink enough yesterday, so she was feeling sick. She wanted pandering to and, quite frankly, I had nothing to pander to her with.
And then there was the pressure - washing into machine, out of machine, onto line, off line, put away, next load; food.
So I refused to deal with the washing. I refused to cook, opting instead to use some spare housekeeping and go to the local Chinese - which suited dad (who wanted fish and chips), which suited my niece and me but not my sister. Ohhhhh the look I got when she realised she'd have to cook for herself. Did I opt for Chinese just because it would irritate my sister? Nah, I'm not that petty. I opted for Chinese because I was thinking just about myself - I wanted a chicken salad and they do a lovely chicken salad. Just so happens that being selfish tweaked the Soup Dragon's beak and I don't regret it for one minute.
So, this morning, brain said sleep, body said get up. For over an hour I had that contest rattling around in my head, eventually, just before 6 a.m. body won. But now I have the impatient dad, the piles of laundry (done & needing done) and a frustration level which is almost as high as the pain levels. Teeth are aching today, yeah, teeth - all my upper jaw teeth are aching. It's not like tooth ache cos there's no pressure or pain when I bite just a deep ache which makes me feel like all my teeth will fall out any time, but they don't. I know, because this isn't the first time I've had this. It's the death of the nerves, eventually the pain'll stop and all I have to do is wait it out.
Rebel Blue strikes today.
Rebel Blue would like to run away.
But I have to swallow it, put it down, shove it in a box because now I have to deal with the laundry, deal with the breakfasts, deal with the pills, deal with the dishes. It's not healthy, but it's the only way I can deal with it right now.
Thursday, 21 May 2015
Beware Reflections
Today's been a day when I felt I needed space, I felt I needed fresh air. So taking care of business has been less comfy than it can be. Now that the rain has stopped and things have dried up, I actually managed to grab 10 minutes outside!
Mind you, there was great fun when I went to the veterinary surgery to collect Suki's needles (Suki's my diabetic cat). Apparently someone thought I was someone else and had decided to hide underneath a desk! Rather odd, fortunately I did not take the hilarity as personal - I could have done, but I didn't.
Mum said something last night, I'm not sure what reaction she was expecting but she certainly didn't get it.
"Good night," says I, after pills, lotions, drops and pad change. "Sleep well, see you in the morning." (My usual end of evening routine litany.)
"I might not be here in the morning." Replies Mum in a little voice. I stopped half way to the bedroom door and turned.
"Well, in that case, have a reasonable journey and I'll see you later."
That stumped her. If she was expecting hysterics, she never got them. If she was expecting a round of pleading and begging for her not to go, she never got it. Mum doesn't have much of a life these days, and I cannot begin to imagine her levels of frustration, desperation and despair. Whether I am ready for her to go or not, the final decision is her's and she's closer to that decision than not. It's an uncomfortable reality, but it's also life.
Then there was dad's request that I cut his toenails - he just can't bend over for long enough to cut them himself these days.
So, this afternoon after getting body & brain into semi-working order I got him sat down in a chair & me on a stool with the various files and cutters and set to work. As a diabetic it is important that we keep an eye on his legs and feet. He already had pretty poor circulation in his legs and one of his legs is now more purple than flesh coloured, that's been since his heart issues started. But, as he raised his other foot onto my knee I saw a green patch on the sole of his foot.
My first thought was "shit! gangrene!" Need to phone the doctor, or should it be an ambulance? Wait a minute, there is no smell of decay, the skin is still tight and not coming off in great gobbets (wonderful word that!). When I brush my fingers over the area there is good tonality, what is going on here? I change position slightly and notice that the colour on his foot disappears. What the . . .?
I'm wearing a green t-shirt, quite a vivid green. The light is reflecting off the t-shirt and onto his foot.
Fortunately, today, I can laugh at myself.
Fortunately, today, it is only a reflection.
SHIT what a day.
Mind you, there was great fun when I went to the veterinary surgery to collect Suki's needles (Suki's my diabetic cat). Apparently someone thought I was someone else and had decided to hide underneath a desk! Rather odd, fortunately I did not take the hilarity as personal - I could have done, but I didn't.
Mum said something last night, I'm not sure what reaction she was expecting but she certainly didn't get it.
"Good night," says I, after pills, lotions, drops and pad change. "Sleep well, see you in the morning." (My usual end of evening routine litany.)
"I might not be here in the morning." Replies Mum in a little voice. I stopped half way to the bedroom door and turned.
"Well, in that case, have a reasonable journey and I'll see you later."
That stumped her. If she was expecting hysterics, she never got them. If she was expecting a round of pleading and begging for her not to go, she never got it. Mum doesn't have much of a life these days, and I cannot begin to imagine her levels of frustration, desperation and despair. Whether I am ready for her to go or not, the final decision is her's and she's closer to that decision than not. It's an uncomfortable reality, but it's also life.
Then there was dad's request that I cut his toenails - he just can't bend over for long enough to cut them himself these days.
So, this afternoon after getting body & brain into semi-working order I got him sat down in a chair & me on a stool with the various files and cutters and set to work. As a diabetic it is important that we keep an eye on his legs and feet. He already had pretty poor circulation in his legs and one of his legs is now more purple than flesh coloured, that's been since his heart issues started. But, as he raised his other foot onto my knee I saw a green patch on the sole of his foot.
My first thought was "shit! gangrene!" Need to phone the doctor, or should it be an ambulance? Wait a minute, there is no smell of decay, the skin is still tight and not coming off in great gobbets (wonderful word that!). When I brush my fingers over the area there is good tonality, what is going on here? I change position slightly and notice that the colour on his foot disappears. What the . . .?
I'm wearing a green t-shirt, quite a vivid green. The light is reflecting off the t-shirt and onto his foot.
Fortunately, today, I can laugh at myself.
Fortunately, today, it is only a reflection.
SHIT what a day.
Wednesday, 20 May 2015
Up and down
Life is all about those ups and downs.
Dad treated me to half a tank of diesel this morning (well, my car, I personally don't partake of the diesel) - that's an "up".
My gut is slowly returning to normal after the savoury rice debacle - I'm pretty sure it was the spices. The amount of pain & bloating did make me wonder how on earth I ever managed to hold down a job while experiencing this full time. So, that's an "up".
Mum's doing not too badly at the moment - just routine stuff, nothing spectacularly amiss. That's an "up".
Dad's doing not too badly considering he was at the hospital yesterday & went shopping this morning. That's an "up".
A while ago, while sitting in a coffee shop I saw a chap with a walking stick & he had somehow managed to hang the walking stick off the side of the table. I was most curious, so I put my glasses on. He had some kind of triangular clip attached to it which was allowing it to balance and not fall all over the place. I admit, I wanted one. One of the things I hate about having to use a walking stick is, if you do sit down at a table, getting it perched right so that it's not going to fall on the floor or trip anyone up or take up a seat all of its own is impossible. With one of these beauties - SOLVED! So I set out trying to find one. Fortunately, I did find one and it was in one of my catalogues so I can "pay it up". It arrived today, who hoo - definitely an "UP".
Then I got an email from Amazon Kindle Direct. They have a royalty payment waiting for me. Oh boy, did I get all excited..! I've dreamt about being a published author for decades. I've fantasised about making a living from crafting words into pictures. I finally grabbed my courage in both hands and published earlier this year. When I read the terms and conditions I got the idea that I would have to have sales of £100 before I would get a payment, so, to get an email saying I had royalties pending you can imagine my utter gobsmackedness. Eagerly I followed the login info to the report page. No details. Ok, let's check the sales page . . . 2 copies, that's all I've sold is 2 copies :( So why am I getting a royalty payment? I won't refuse even £2 payment, won't make any kind of dent in my overdraft, but it's the principal. *sigh* "down".
Will see what actually arrives in my bank account around the end of this month. But since I was already struggling with a blockage in book 2, it doesn't really give me much of a reason to plough on. (Though I probably will, cos I enjoy reading my own work lol ).
Below is the walking stick holder.
Dad treated me to half a tank of diesel this morning (well, my car, I personally don't partake of the diesel) - that's an "up".
My gut is slowly returning to normal after the savoury rice debacle - I'm pretty sure it was the spices. The amount of pain & bloating did make me wonder how on earth I ever managed to hold down a job while experiencing this full time. So, that's an "up".
Mum's doing not too badly at the moment - just routine stuff, nothing spectacularly amiss. That's an "up".
Dad's doing not too badly considering he was at the hospital yesterday & went shopping this morning. That's an "up".
A while ago, while sitting in a coffee shop I saw a chap with a walking stick & he had somehow managed to hang the walking stick off the side of the table. I was most curious, so I put my glasses on. He had some kind of triangular clip attached to it which was allowing it to balance and not fall all over the place. I admit, I wanted one. One of the things I hate about having to use a walking stick is, if you do sit down at a table, getting it perched right so that it's not going to fall on the floor or trip anyone up or take up a seat all of its own is impossible. With one of these beauties - SOLVED! So I set out trying to find one. Fortunately, I did find one and it was in one of my catalogues so I can "pay it up". It arrived today, who hoo - definitely an "UP".
Then I got an email from Amazon Kindle Direct. They have a royalty payment waiting for me. Oh boy, did I get all excited..! I've dreamt about being a published author for decades. I've fantasised about making a living from crafting words into pictures. I finally grabbed my courage in both hands and published earlier this year. When I read the terms and conditions I got the idea that I would have to have sales of £100 before I would get a payment, so, to get an email saying I had royalties pending you can imagine my utter gobsmackedness. Eagerly I followed the login info to the report page. No details. Ok, let's check the sales page . . . 2 copies, that's all I've sold is 2 copies :( So why am I getting a royalty payment? I won't refuse even £2 payment, won't make any kind of dent in my overdraft, but it's the principal. *sigh* "down".
Will see what actually arrives in my bank account around the end of this month. But since I was already struggling with a blockage in book 2, it doesn't really give me much of a reason to plough on. (Though I probably will, cos I enjoy reading my own work lol ).
Below is the walking stick holder.
Monday, 18 May 2015
Some days!
There are some days when nothing quite goes right.
Whether that's trying to get an ATM machine to recognise your card, the car to start, the washing machine door to close, the cooker to light, saying the wrong thing at the wrong time despite the best of motives, forgetting what you went into a shop to get, finding you didn't have enough money in your purse (or opened the purse the wrong way & spilt changed everywhere).
The kind of day when it feels like the universe just wants you to go back to bed and start again.
*sigh*
Plus, I have the added complication today of my right little finger trying to twist itself into a pretzel shape. My tendons do this from time to time, usually it's my left foot turning inwards on itself making walking hard but, just for a change, it's my little finger. Bloody sore as well as inconvenient.
Oh well - if I have insulted or stepped on toes or said the wrong thing or misinterpreted what was said or done - my apologies, chances are I didn't mean it because, well, I usually don't make a habit of being snide or bitchy. It's just one of those days.
Whether that's trying to get an ATM machine to recognise your card, the car to start, the washing machine door to close, the cooker to light, saying the wrong thing at the wrong time despite the best of motives, forgetting what you went into a shop to get, finding you didn't have enough money in your purse (or opened the purse the wrong way & spilt changed everywhere).
The kind of day when it feels like the universe just wants you to go back to bed and start again.
*sigh*
Plus, I have the added complication today of my right little finger trying to twist itself into a pretzel shape. My tendons do this from time to time, usually it's my left foot turning inwards on itself making walking hard but, just for a change, it's my little finger. Bloody sore as well as inconvenient.
Oh well - if I have insulted or stepped on toes or said the wrong thing or misinterpreted what was said or done - my apologies, chances are I didn't mean it because, well, I usually don't make a habit of being snide or bitchy. It's just one of those days.
Sunday, 17 May 2015
If . . .
Yesterday was a bit of a bummer. I had my heart set on a particular top I'd seen on Tesco's F & F clothing page. £16 is a bit more than I'd usually be prepared to spend but if I get the wear out of it I would suspect I could, then £16 over a 2 year period isn't too bad. But the Tesco in Gala didn't have one, the Tesco in Dalkeith didn't have one, so I have to decide whether to try Tesco Direct or whether I just pass it up and sigh philosophically. You know, when I worked a regular job I didn't bat an eyelash at spending £16 on a top I know I'd wear a lot. But times are different now.
I don't know if my intolerance of sound is due to the fibro or due to the cacophony in my head or just my lack of ability to concentrate these days but I found myself tidying up the other day without music on. I find myself driving without background music a fair bit of the time. I'd rather no listen to ticking clocks either - something I've just noticed sitting here in the kitchen resting my sore legs & back before heading back to finish tidying up & doing dishes.
In a somewhat wishful frame of mind, I find myself wishing what if dad didn't feel the need to use 6 cups & mugs in a day and leave half of them dotted around the garden? What if I didn't have to tackle stairs many times every day? What if we had a kitchen designed for ease of use and not have to bend over or reach onto tiptoe so often? What if the cats actually ate everything in their bowel? What if I actually had a dish washer? What if we had a house on one level so that Mum could have a change of scenery, have her bed moved from the bedroom to the living room? What if I actually had an income again, instead of surviving on the charity of my family and getting a handout which one government dept says is enough to live on and another government depart says isn't enough to live on. What if I didn't have to juggle everyone's "need" for the washing machine all at the same time? What if I had a cat flap? What if 2 of my little darlings actually used the litter tray as they are supposed to and not bath mats?
Years ago, when I was younger, fitter, healthier and unweighed down by the bollocks of life, I would never have considered a dishwasher. I'd never have found myself wishing my car had an automatic transmission or a touch/close boot lid. These days I find myself being prepared to make all sorts of compromises simply so I can keep going.
Never mind, B12 injection tomorrow YAY By Wednesday my endurance should have increased a bit and my pain levels dropped a bit. Won't do anything for the other issues but an improvement in one area of life can lift one's perspective on the rest of it.
I don't know if my intolerance of sound is due to the fibro or due to the cacophony in my head or just my lack of ability to concentrate these days but I found myself tidying up the other day without music on. I find myself driving without background music a fair bit of the time. I'd rather no listen to ticking clocks either - something I've just noticed sitting here in the kitchen resting my sore legs & back before heading back to finish tidying up & doing dishes.
In a somewhat wishful frame of mind, I find myself wishing what if dad didn't feel the need to use 6 cups & mugs in a day and leave half of them dotted around the garden? What if I didn't have to tackle stairs many times every day? What if we had a kitchen designed for ease of use and not have to bend over or reach onto tiptoe so often? What if the cats actually ate everything in their bowel? What if I actually had a dish washer? What if we had a house on one level so that Mum could have a change of scenery, have her bed moved from the bedroom to the living room? What if I actually had an income again, instead of surviving on the charity of my family and getting a handout which one government dept says is enough to live on and another government depart says isn't enough to live on. What if I didn't have to juggle everyone's "need" for the washing machine all at the same time? What if I had a cat flap? What if 2 of my little darlings actually used the litter tray as they are supposed to and not bath mats?
Years ago, when I was younger, fitter, healthier and unweighed down by the bollocks of life, I would never have considered a dishwasher. I'd never have found myself wishing my car had an automatic transmission or a touch/close boot lid. These days I find myself being prepared to make all sorts of compromises simply so I can keep going.
Never mind, B12 injection tomorrow YAY By Wednesday my endurance should have increased a bit and my pain levels dropped a bit. Won't do anything for the other issues but an improvement in one area of life can lift one's perspective on the rest of it.
Friday, 15 May 2015
Bells and bows
I no longer have any trouble admitting I'm wrong - either in thought, perception or deed. I think most of us have an issue admitting guilt, especially as we learn as children that consequences for wrongful actions can be unpleasant. Being an adult means taking responsibility and the consequences.
Last year when my niece announced she was going to work in Norway, I have to admit I perceived it as a "wrong choice". I had a lot of convoluted layers for saying so, as well as a true & honest belief that it wasn't right. I'm glad to say I was proven wrong.
A lot of the time I keep my perceptions to myself, because I know full well that a person's path is their own. Sometimes, however, I do have to speak out. Many years ago I got over the fact that people, in general, don't want to hear what I have to say - even if they are the ones asking. So, there is no expectation on my part for the person on the receiving end to actually do what is suggested to them (even if I am subsequently proved correct). Many years ago I got over the fact that I could be called controlling or manipulative or just plain jealous when stating what I perceived - people just don't like to hear things sometimes, even if they ask.
So, my niece comes home from Norway, with her new man friend in tow. She's a popular lass, she's one of those rare people who can spread sunshine just by walking into a room - I know she doesn't see it, but she's looking from the inside out rather than the outside in. (Confused yet? lol)
I've met a few of her man friends before but I've never felt anything quite like what I felt from this one - and that's a good thing.
Before I go any further I should probably state this quite clearly - no human on the planet is a saint, each and every one of us has a dark corner or a shadow or something but that's the thing which makes us who we are. Our early lives, our early family scene or early friends all helped create the platform we subsequently present to the world. And so very few are aware of these foundations, and how they potentially make us darker or lighter in nature.
When I meet people I don't turn my "shamanic" gaze on them unless I'm invited or I sense a potential issue. I just size people up as everyone else does. I don't delve into people's minds & spirits at will or on a whim - this seems to surprise so many people. But it's a bit like walking past someone's house with the curtains open. I'll be aware of the house, of the curtains being open but I won't look into the window unless invited - that's the difference between someone who is nosey & someone who is respectful of privacy or boundaries.
This new man friend - I approve. Though my approval of her relationship is not required for her to have it - and I know this. Doesn't stop me having an opinion. He's as far from a controlling, manipulating, grandstanding person as I have come across so far and it is positively refreshing. But, what is far more important, is she is happy, right down to her toenails and it's a good happy. A happy without the blinkers. Here, finally, may be the person who can let her fly free but keep her grounded and give her a good, safe, comfy place to land.
How far will the relationship go? I have no idea, it's not my place to figure it out, that is something the two of them need to discuss. But, if my blessing is required or requested, the two of them have it with bells & bows.
Last year when my niece announced she was going to work in Norway, I have to admit I perceived it as a "wrong choice". I had a lot of convoluted layers for saying so, as well as a true & honest belief that it wasn't right. I'm glad to say I was proven wrong.
A lot of the time I keep my perceptions to myself, because I know full well that a person's path is their own. Sometimes, however, I do have to speak out. Many years ago I got over the fact that people, in general, don't want to hear what I have to say - even if they are the ones asking. So, there is no expectation on my part for the person on the receiving end to actually do what is suggested to them (even if I am subsequently proved correct). Many years ago I got over the fact that I could be called controlling or manipulative or just plain jealous when stating what I perceived - people just don't like to hear things sometimes, even if they ask.
So, my niece comes home from Norway, with her new man friend in tow. She's a popular lass, she's one of those rare people who can spread sunshine just by walking into a room - I know she doesn't see it, but she's looking from the inside out rather than the outside in. (Confused yet? lol)
I've met a few of her man friends before but I've never felt anything quite like what I felt from this one - and that's a good thing.
Before I go any further I should probably state this quite clearly - no human on the planet is a saint, each and every one of us has a dark corner or a shadow or something but that's the thing which makes us who we are. Our early lives, our early family scene or early friends all helped create the platform we subsequently present to the world. And so very few are aware of these foundations, and how they potentially make us darker or lighter in nature.
When I meet people I don't turn my "shamanic" gaze on them unless I'm invited or I sense a potential issue. I just size people up as everyone else does. I don't delve into people's minds & spirits at will or on a whim - this seems to surprise so many people. But it's a bit like walking past someone's house with the curtains open. I'll be aware of the house, of the curtains being open but I won't look into the window unless invited - that's the difference between someone who is nosey & someone who is respectful of privacy or boundaries.
This new man friend - I approve. Though my approval of her relationship is not required for her to have it - and I know this. Doesn't stop me having an opinion. He's as far from a controlling, manipulating, grandstanding person as I have come across so far and it is positively refreshing. But, what is far more important, is she is happy, right down to her toenails and it's a good happy. A happy without the blinkers. Here, finally, may be the person who can let her fly free but keep her grounded and give her a good, safe, comfy place to land.
How far will the relationship go? I have no idea, it's not my place to figure it out, that is something the two of them need to discuss. But, if my blessing is required or requested, the two of them have it with bells & bows.
Wednesday, 13 May 2015
Word for the day "Awesome"
It's been a day of 2 parts today.
First thing this morning, after body had decided it would graciously obey the mind's instructions to MOVE, I went out to feed the birds. (I'm going to have to create a new bird feeding station though, the one I have is falling apart.) I take a relatively large bucket with food out to put some on the wee table, some on the ground on the slabs and fill the actual feeder. Usually I hear all the birds in the surrounding hedges sound the battle drums, the call to breakfast!
Today I was also aware of being watched from the roof, the gutter just above the living room window to be precise. A solitary, and not very large, pigeon (most of our resident pigeons are quite substantial). What absolutely gorgeous colours it had.
Poor thing must have been hungry because as soon as I had tipped some seed onto the table it flapped in. I was still at the table, bending over, getting another beaker full. I heard the wings, I felt the down draft and I felt really quite humbled that the poor thing would risk my immediate presence.
I didn't freak, I didn't shriek, I just stayed bent over until the pigeon had made its mind up whether to try landing or return to the gutter.
It tried again as I put the seed on the ground.
Finally I just had to look at it and suggest it give me about 20 or 30 seconds to fill the feeder and step away. It gave me that look - the "are you talking to me" look.
Job finished, I stepped away, one step, just to see how desperate/brave the pigeon was. Yup, SWOOP! Straight in, wings about 6 inches from my nose.
AWESOME - I don't use that word lightly but I did feel it was a particularly awesome moment.
This was followed by the usual frenetic "breakfast" issues, followed by a delayed departure for dad's weekly shopping trip (due to an unscheduled, pre-breakfast trip into town by my sister, following a call from her son), followed by a "proper" shopping trip.
It was just after 1 p.m.when I finally got to stretch out on my bed, until then pain hadn't been too bad & all limbs worked reasonably well.
Just after 2 p.m. Mum shouts "I need help!"
I tried to spring out of bed, hit the floor running and see what the problem was. Reality, sit up - deal with resultant dizzy spell. Get feet on floor to find one foot seems to want to not work right. Try to stand up, immediately sit back onto bed, deal with more dizziness. Eventually get to feet. Hand braced against wall. Right foot still not wanting to work accompanied by this rather nasty red hot tearing pain around heel (which is already damaged) and ankle. Pause, deep breath, put down pain. Stagger through to Mum's room.
"I think I've had a bowel motion," I'm informed. Not exactly a 999 situation.
When you become a carer, in the sense of providing physical care, you soon learn there is nothing about someone else's body you will not become more familiar with than you might otherwise care to. Consequently, I know my mother's bowel habits as well as I know my own. So, when informed of this situation, I realise I am either headed to a "pebble" situation, a "turd" situation or a liquid mess situation. Worst one is the liquid one.
So, bearing in mind that body has not acclimatised to being in an upright position, right leg feels massive but empty, left leg is as iffy as it usually is and back is saying "don't you dare bend over yet".
Yes, I could raise Mum's bed up - it certainly has that facility. But, in order to deal with this situation, Mum needs to be on her side. If her bed is elevated she has a drop between her and dad's bed. Sooooo the choice is - raise the bed up, save my back but have Mum wobble around so much it's impossible to have 2 hands free OR have her bed down, propped against dad's bed and potentially injure my back. What a choice!
Situation sorted, everyone cleaned, freshened, ointment on etc etc etc. Mum a bit better frame of mind. Me? Back killing me, right leg filled with red hot liquid pain and left leg laughing at me when I instruct it to move.
So, aside from cooking, delivering & helping consumption of supper & putting a load of washing on, I haven't done much this afternoon. Now I seem to have a red hot steel spike in my right ankle, I do hope it eases off soon, it's a bloody nuisance.
First thing this morning, after body had decided it would graciously obey the mind's instructions to MOVE, I went out to feed the birds. (I'm going to have to create a new bird feeding station though, the one I have is falling apart.) I take a relatively large bucket with food out to put some on the wee table, some on the ground on the slabs and fill the actual feeder. Usually I hear all the birds in the surrounding hedges sound the battle drums, the call to breakfast!
Today I was also aware of being watched from the roof, the gutter just above the living room window to be precise. A solitary, and not very large, pigeon (most of our resident pigeons are quite substantial). What absolutely gorgeous colours it had.
Poor thing must have been hungry because as soon as I had tipped some seed onto the table it flapped in. I was still at the table, bending over, getting another beaker full. I heard the wings, I felt the down draft and I felt really quite humbled that the poor thing would risk my immediate presence.
I didn't freak, I didn't shriek, I just stayed bent over until the pigeon had made its mind up whether to try landing or return to the gutter.
It tried again as I put the seed on the ground.
Finally I just had to look at it and suggest it give me about 20 or 30 seconds to fill the feeder and step away. It gave me that look - the "are you talking to me" look.
Job finished, I stepped away, one step, just to see how desperate/brave the pigeon was. Yup, SWOOP! Straight in, wings about 6 inches from my nose.
AWESOME - I don't use that word lightly but I did feel it was a particularly awesome moment.
This was followed by the usual frenetic "breakfast" issues, followed by a delayed departure for dad's weekly shopping trip (due to an unscheduled, pre-breakfast trip into town by my sister, following a call from her son), followed by a "proper" shopping trip.
It was just after 1 p.m.when I finally got to stretch out on my bed, until then pain hadn't been too bad & all limbs worked reasonably well.
Just after 2 p.m. Mum shouts "I need help!"
I tried to spring out of bed, hit the floor running and see what the problem was. Reality, sit up - deal with resultant dizzy spell. Get feet on floor to find one foot seems to want to not work right. Try to stand up, immediately sit back onto bed, deal with more dizziness. Eventually get to feet. Hand braced against wall. Right foot still not wanting to work accompanied by this rather nasty red hot tearing pain around heel (which is already damaged) and ankle. Pause, deep breath, put down pain. Stagger through to Mum's room.
"I think I've had a bowel motion," I'm informed. Not exactly a 999 situation.
When you become a carer, in the sense of providing physical care, you soon learn there is nothing about someone else's body you will not become more familiar with than you might otherwise care to. Consequently, I know my mother's bowel habits as well as I know my own. So, when informed of this situation, I realise I am either headed to a "pebble" situation, a "turd" situation or a liquid mess situation. Worst one is the liquid one.
So, bearing in mind that body has not acclimatised to being in an upright position, right leg feels massive but empty, left leg is as iffy as it usually is and back is saying "don't you dare bend over yet".
Yes, I could raise Mum's bed up - it certainly has that facility. But, in order to deal with this situation, Mum needs to be on her side. If her bed is elevated she has a drop between her and dad's bed. Sooooo the choice is - raise the bed up, save my back but have Mum wobble around so much it's impossible to have 2 hands free OR have her bed down, propped against dad's bed and potentially injure my back. What a choice!
Situation sorted, everyone cleaned, freshened, ointment on etc etc etc. Mum a bit better frame of mind. Me? Back killing me, right leg filled with red hot liquid pain and left leg laughing at me when I instruct it to move.
So, aside from cooking, delivering & helping consumption of supper & putting a load of washing on, I haven't done much this afternoon. Now I seem to have a red hot steel spike in my right ankle, I do hope it eases off soon, it's a bloody nuisance.
Tuesday, 12 May 2015
A quiet place
Well, tis another day.
Yesterday really wasn't that bad. Dad only "lost" 2 mugs and 1 bag of bulbs, which I was obliquely accused of throwing out (all subsequently found). Mum "lost" her locket, it was on the chain she was wearing, chain snapped, locket "lost". I have no doubt that when I either a) strip her bed entirely or b) vacuum under the bed said "lost" locket will be found. Bless, she gets quite upset at these things, so I've suggested she talk to the "fairies" since they are so fond of temporarily borrowing her pretties, when asked nicely said pretties usually turn up again.
But, as I sit here, having vacuumed, washed floors, put the first load of washing on, soaking the breakfast dishes, listening to the carers move around upstairs and someone outside mowing some grass I have to wonder about a quiet place.
In 2008 I ripped most of the muscles around my right shoulder - the deltoid area itself, muscles under my shoulder blade and across the pectoral - humphing mum around after she had passed out. It took several months, 2 steroid injections and 2 very puzzled physios before a very simple exercise was found to help ease things. Wellllllllllllll this morning, didn't I wake to find that same area giving me hell. Don't ask me what I've done this time, I have no idea, but it's going to make using my walking stick a nuisance.
But that extra layer of pain just adds to the desire for a quiet place.
True, nowhere on the planet is entirely quiet - between animals, insects, humans, wind, rain etc etc etc, it just seems that these days the sounds of humanity are far greater than they used to be. Maybe it's just me. Maybe I just can't ignore humanity's noise - from cars to high heels on hard floors to machinery - as easily any more.
Glen Nevis was "human" quiet - yes, there were people around & vehicles yet those sounds seemed to fade so much faster.
Traigh Beach outside Arisaig, is another place where I find that effect.
I wish I had a quiet place just a bit closer to home & easier to get to. *sigh*
Yesterday really wasn't that bad. Dad only "lost" 2 mugs and 1 bag of bulbs, which I was obliquely accused of throwing out (all subsequently found). Mum "lost" her locket, it was on the chain she was wearing, chain snapped, locket "lost". I have no doubt that when I either a) strip her bed entirely or b) vacuum under the bed said "lost" locket will be found. Bless, she gets quite upset at these things, so I've suggested she talk to the "fairies" since they are so fond of temporarily borrowing her pretties, when asked nicely said pretties usually turn up again.
But, as I sit here, having vacuumed, washed floors, put the first load of washing on, soaking the breakfast dishes, listening to the carers move around upstairs and someone outside mowing some grass I have to wonder about a quiet place.
In 2008 I ripped most of the muscles around my right shoulder - the deltoid area itself, muscles under my shoulder blade and across the pectoral - humphing mum around after she had passed out. It took several months, 2 steroid injections and 2 very puzzled physios before a very simple exercise was found to help ease things. Wellllllllllllll this morning, didn't I wake to find that same area giving me hell. Don't ask me what I've done this time, I have no idea, but it's going to make using my walking stick a nuisance.
But that extra layer of pain just adds to the desire for a quiet place.
True, nowhere on the planet is entirely quiet - between animals, insects, humans, wind, rain etc etc etc, it just seems that these days the sounds of humanity are far greater than they used to be. Maybe it's just me. Maybe I just can't ignore humanity's noise - from cars to high heels on hard floors to machinery - as easily any more.
Glen Nevis was "human" quiet - yes, there were people around & vehicles yet those sounds seemed to fade so much faster.
Traigh Beach outside Arisaig, is another place where I find that effect.
I wish I had a quiet place just a bit closer to home & easier to get to. *sigh*
Sunday, 10 May 2015
What if . . . ?
Today will be a day of grinding one's teeth, chocolate, fizzy pop and crisps - stress food, a la me.
Yesterday morning my left leg really did not want to work, my sister, thinking she was doing me a favour whilst we were out shopping, took the trolley away from me & I almost fell - boy did that make her pissy (aye, her, sod the way I felt about it) and, first thing in the morning, I couldn't get my eyes to work right. Eventually sorted itself out but it wasn't the best of starts.
Followed by mum having one of her spoilt child tantrums and dad informing me that he had dumped all of mum's clean clothes on the floor because they had been put on his ottoman and he didn't want them there and I should really get them put away as soon as they went upstairs. *sigh*
So, this morning, after a view of the latest episode of Outlander, via Amazon Prime's 30 day free trial, which left me feeling frustrated. And the usual "Mum's awake, you can take her breakfast up now" announcement at 7:05, just as I had started to boil my eggs, really didn't detract much from yesterday's stress. Though my eyes are much better today & my leg isn't overly sore yet.
I started wondering what will it be like when I don't have to get out of bed in time for my body to adjust so that Mum's breakfast is presented between 7:30 + 7:40 a.m.? What will it be like when I don't have to find out when 2 people are going to come into the house bright & breezy when, quite frankly, I am far less than bright & breezy? What will it be like when all that prevents me from going back to bed if I so wish to is nothing at all?
Aside from the emotional pain, the emptiness, the financial worries, that is.
Then my gaze fell upon this very old polaroid. It's over 25 years old, maybe even 27 years ago. Taken in the then local nightclub of Digby's. Me with am arm wrapped around the waist of a male stripper, grinning like a cheshire cat.
To be honest, I don't remember much about that night specifically. I do remember that photograph though. I'd convinced my sister to accompany me to see the Hollywood Male Strippers (I think that was their name). It was a grand night. Not that I drank because I was driving, but alcohol doesn't mean you can't have a grand time. There was one stripper, boyish looks, longish blonde hair - he was obviously the most popular. Don't get me wrong, he was nice to look at but he was too full of himself for my tastes. I rather liked the shyer one, who turned out to be the newest member of the troop.
At the end of the performances there was the obligatory photo call. My sis & I stood in line, waiting patiently. Our turn came. My sis sat on the knee of the blonde one. I went to the side of the group - I've never been one for limelight or desire to be centre stage. And the young stripper came to stand at my side. lol :) He asked me if I would rather not sit on the blonde's other leg, next to my sister, and I just looked up into the most amazingly blue/silver eyes and said,quite clearly.
"No, thank you, I am exactly where I want to be."
Oh but the smile which lit up his entire being - obviously no one had said anything like that to him before. One of his arms pulled me as close to him as he could get me and I put my arm around his waist & I remember, quite clearly, thinking "You poor lad, you're freezing cold!"
I sometimes wonder what happened to him, what happened to his "career", where was he now. Definitely a "what if" moment - a dream which can be taken any which way you care to take it because, let's face it, the chance of crossing paths with that nameless stripper again are 0. The chances of him still being as gorgeous on the outside as he was on the inside are 0. But, when the demands of everyone else and pain come close to overwhelming me, I can sit and look at that photo and just daydream for a short while.
Interesting how less than a minute, and only 2 lines of conversation, can be so memorable.
Yesterday morning my left leg really did not want to work, my sister, thinking she was doing me a favour whilst we were out shopping, took the trolley away from me & I almost fell - boy did that make her pissy (aye, her, sod the way I felt about it) and, first thing in the morning, I couldn't get my eyes to work right. Eventually sorted itself out but it wasn't the best of starts.
Followed by mum having one of her spoilt child tantrums and dad informing me that he had dumped all of mum's clean clothes on the floor because they had been put on his ottoman and he didn't want them there and I should really get them put away as soon as they went upstairs. *sigh*
So, this morning, after a view of the latest episode of Outlander, via Amazon Prime's 30 day free trial, which left me feeling frustrated. And the usual "Mum's awake, you can take her breakfast up now" announcement at 7:05, just as I had started to boil my eggs, really didn't detract much from yesterday's stress. Though my eyes are much better today & my leg isn't overly sore yet.
I started wondering what will it be like when I don't have to get out of bed in time for my body to adjust so that Mum's breakfast is presented between 7:30 + 7:40 a.m.? What will it be like when I don't have to find out when 2 people are going to come into the house bright & breezy when, quite frankly, I am far less than bright & breezy? What will it be like when all that prevents me from going back to bed if I so wish to is nothing at all?
Aside from the emotional pain, the emptiness, the financial worries, that is.
Then my gaze fell upon this very old polaroid. It's over 25 years old, maybe even 27 years ago. Taken in the then local nightclub of Digby's. Me with am arm wrapped around the waist of a male stripper, grinning like a cheshire cat.
To be honest, I don't remember much about that night specifically. I do remember that photograph though. I'd convinced my sister to accompany me to see the Hollywood Male Strippers (I think that was their name). It was a grand night. Not that I drank because I was driving, but alcohol doesn't mean you can't have a grand time. There was one stripper, boyish looks, longish blonde hair - he was obviously the most popular. Don't get me wrong, he was nice to look at but he was too full of himself for my tastes. I rather liked the shyer one, who turned out to be the newest member of the troop.
At the end of the performances there was the obligatory photo call. My sis & I stood in line, waiting patiently. Our turn came. My sis sat on the knee of the blonde one. I went to the side of the group - I've never been one for limelight or desire to be centre stage. And the young stripper came to stand at my side. lol :) He asked me if I would rather not sit on the blonde's other leg, next to my sister, and I just looked up into the most amazingly blue/silver eyes and said,quite clearly.
"No, thank you, I am exactly where I want to be."
Oh but the smile which lit up his entire being - obviously no one had said anything like that to him before. One of his arms pulled me as close to him as he could get me and I put my arm around his waist & I remember, quite clearly, thinking "You poor lad, you're freezing cold!"
I sometimes wonder what happened to him, what happened to his "career", where was he now. Definitely a "what if" moment - a dream which can be taken any which way you care to take it because, let's face it, the chance of crossing paths with that nameless stripper again are 0. The chances of him still being as gorgeous on the outside as he was on the inside are 0. But, when the demands of everyone else and pain come close to overwhelming me, I can sit and look at that photo and just daydream for a short while.
Interesting how less than a minute, and only 2 lines of conversation, can be so memorable.
Saturday, 9 May 2015
Mother Theresa vs reality
As a carer an unspoken image is presented - that of a saintly figure benignly going about the business of putting everyone else first and their own person second.
I'd challenge that as being totally unrealistic.
Mother Theresa was, undoubtedly, a good person. However, even she had time off and didn't apply herself all day everyday to just one or two people - there in lies the difference.
I slept last night, or, at least my eyes were closed & I was in bed. But, when the usual lower back & hip pain finally roused me just before 5 I felt as though I hadn't slept at all. My body felt reluctant to move and everything was so very heavy and lethargic. No long after I got downstairs my face started to ache - it does this from time to time. An application of deep freeze gel usually sees it off but, guess what?, I have none left.
Dad appears shortly after me, promptly taking over the kitchen relegating me to sit at my pc & browse email & facebook, even though I was dying for a glass of water. It's hard to explain what it's like sharing a house with someone who is so single-minded these days about what he wants to do & when he wants to do it that there is no compromise. So, despite how I feel or what I want, I just wait until he sits down, finally.
There are times when it feels distinctly as if I have no control whatsoever over what I have to do, or the timing of it.
I have no idea where the time went this morning, but I didn't have my coffee until after 6, which put my breakfast at well after 7. Of course, dad, after having yet another nap, returns to the kitchen just after 7 and announces that "Mother is awake". Supposedly that's my cue to jump to my feet, race around the kitchen getting her breakfast prepared and take it upstairs where I have to stand and feed her (after the obligatory night pad change - that can be an adventure in & of itself). In the last week or so I have resisted the passive/aggressive body language and words. In the last week I have been trying to ensure I have my breakfast & painkillers BEFORE I attempt Mum's breakfast & pad change.
Why?
Because I've found that if I don't eat before her breakfast then my own breakfast gets pushed past 8 a.m. and, by that point, my body is starting to shake and the pain levels are such that painkillers won't work for the rest of the day. So, I put myself before Mum HOWEVER, doing this simply puts more pressure on being awake early enough to get body moving before her breakfast at 7:30 (ish). There is no point in trying to explain this to dad because a) he doesn't get it, I don't "look" unwell and the way I move is certainly a put on, b) Mum is the centre of his world therefore she should be the centre of everyone else's world, especially mine as I get paid to be her carer and c) he knows best.
Standing still feeding Mum today is difficult, left leg/hip/back pain.
What is the point to this? The point is this - I'm human, all carers are human, and every day we have to fight to deal with the stress of who goes first and why. And it's there every day, sometimes all day, sometimes only in small batches. No one, absolutely no one is centred enough, grounded enough and well enough to do this all the time. It takes a lot to resist the pressure of others, the huffing, the puffing, the glares and sideways looks as you refuse to perform on cue or dance to the timetable of another.
No one is perfect, no one is a saint all the time and it's wrong that we expect that of ourselves (if anyone knows how to reprogramme that response in short order, let me know, will you?).
I'd challenge that as being totally unrealistic.
Mother Theresa was, undoubtedly, a good person. However, even she had time off and didn't apply herself all day everyday to just one or two people - there in lies the difference.
I slept last night, or, at least my eyes were closed & I was in bed. But, when the usual lower back & hip pain finally roused me just before 5 I felt as though I hadn't slept at all. My body felt reluctant to move and everything was so very heavy and lethargic. No long after I got downstairs my face started to ache - it does this from time to time. An application of deep freeze gel usually sees it off but, guess what?, I have none left.
Dad appears shortly after me, promptly taking over the kitchen relegating me to sit at my pc & browse email & facebook, even though I was dying for a glass of water. It's hard to explain what it's like sharing a house with someone who is so single-minded these days about what he wants to do & when he wants to do it that there is no compromise. So, despite how I feel or what I want, I just wait until he sits down, finally.
There are times when it feels distinctly as if I have no control whatsoever over what I have to do, or the timing of it.
I have no idea where the time went this morning, but I didn't have my coffee until after 6, which put my breakfast at well after 7. Of course, dad, after having yet another nap, returns to the kitchen just after 7 and announces that "Mother is awake". Supposedly that's my cue to jump to my feet, race around the kitchen getting her breakfast prepared and take it upstairs where I have to stand and feed her (after the obligatory night pad change - that can be an adventure in & of itself). In the last week or so I have resisted the passive/aggressive body language and words. In the last week I have been trying to ensure I have my breakfast & painkillers BEFORE I attempt Mum's breakfast & pad change.
Why?
Because I've found that if I don't eat before her breakfast then my own breakfast gets pushed past 8 a.m. and, by that point, my body is starting to shake and the pain levels are such that painkillers won't work for the rest of the day. So, I put myself before Mum HOWEVER, doing this simply puts more pressure on being awake early enough to get body moving before her breakfast at 7:30 (ish). There is no point in trying to explain this to dad because a) he doesn't get it, I don't "look" unwell and the way I move is certainly a put on, b) Mum is the centre of his world therefore she should be the centre of everyone else's world, especially mine as I get paid to be her carer and c) he knows best.
Standing still feeding Mum today is difficult, left leg/hip/back pain.
What is the point to this? The point is this - I'm human, all carers are human, and every day we have to fight to deal with the stress of who goes first and why. And it's there every day, sometimes all day, sometimes only in small batches. No one, absolutely no one is centred enough, grounded enough and well enough to do this all the time. It takes a lot to resist the pressure of others, the huffing, the puffing, the glares and sideways looks as you refuse to perform on cue or dance to the timetable of another.
No one is perfect, no one is a saint all the time and it's wrong that we expect that of ourselves (if anyone knows how to reprogramme that response in short order, let me know, will you?).
Thursday, 7 May 2015
Caring Part 3
Now we come to dad.
Dad is, and always has been, highly protective of Mum. There are times when I do wonder why they had children since, well, it seems as though we all take second place to Mum. But,then, it's the way it is.
He used to like preparing all her meals, her drinks, changing her etc etc. Then he got old. Then he got sick - he has diabetes (is now on insulin) as well as severe congestive heart failure. He hasn't been able to move or roll her for quite a few years and it hasn't been easy on him backing off from what he sees as his role.
He still, on occasions, likes to make her a sandwich but he never remembers to tell me he's doing this so I don't double do the food prep. So, I have to keep a weather eye on him when it comes to meal times. Same with her meds, sometimes he does them, sometimes he doesn't and he forgets that he shouldn't.
He likes to putter in the garden. Unfortunately, he also falls in the garden a fair bit - usually in or around the roses! Or down manholes! The drs can't find anything wrong with him, as far as the falls go. He likes to buy new plants for the garden even though it is full to bursting with lovely plants. That said, he can't do anything as much as he used to and gets annoyed at me or my sister if we don't do what he wants done in the garden in the timescale he wants it done in. Our ability, or fitness levels are of no concern.
He wasn't like this when he was younger, but then, when he was younger he did most things himself.
His hearing isn't the best, he refuses to use his hearing aids because they hurt his ears, so he gets me to phone places for him, if email or internet ordering can't be done.
When he goes to hospital he can't be bothered any longer to interact with the medics so either my sister or I have to do it for him. Usually it's me because I'm far more tolerant than my sister. Recently I've had to lodge our Power of Attorney with the local hospital because they weren't listening to us. (Why listen to family?) That was a day of phone calls back & forth, mostly speaking to secretaries, who couldn't have been more helpful.
Speaking of Power of Attorney - if you have older parents, get Power of Attorney organised & agreed well before you need it. Make it while their decision making capabilities cannot be called into question and get them to draw up their Wills.
It is uncomfy to entertain the idea that, one day, loved ones won't be capable or won't be around BUT having these things in place before hand saves so much heartache & conflict.
Today he's suffering from having done too much yesterday & yesterday was just a trip to the supermarket. He's puffing quite hard and he's dizzy. So it's been a case of juggling him and mum. Lucky I have long arms LOL
Dad is, and always has been, highly protective of Mum. There are times when I do wonder why they had children since, well, it seems as though we all take second place to Mum. But,then, it's the way it is.
He used to like preparing all her meals, her drinks, changing her etc etc. Then he got old. Then he got sick - he has diabetes (is now on insulin) as well as severe congestive heart failure. He hasn't been able to move or roll her for quite a few years and it hasn't been easy on him backing off from what he sees as his role.
He still, on occasions, likes to make her a sandwich but he never remembers to tell me he's doing this so I don't double do the food prep. So, I have to keep a weather eye on him when it comes to meal times. Same with her meds, sometimes he does them, sometimes he doesn't and he forgets that he shouldn't.
He likes to putter in the garden. Unfortunately, he also falls in the garden a fair bit - usually in or around the roses! Or down manholes! The drs can't find anything wrong with him, as far as the falls go. He likes to buy new plants for the garden even though it is full to bursting with lovely plants. That said, he can't do anything as much as he used to and gets annoyed at me or my sister if we don't do what he wants done in the garden in the timescale he wants it done in. Our ability, or fitness levels are of no concern.
He wasn't like this when he was younger, but then, when he was younger he did most things himself.
His hearing isn't the best, he refuses to use his hearing aids because they hurt his ears, so he gets me to phone places for him, if email or internet ordering can't be done.
When he goes to hospital he can't be bothered any longer to interact with the medics so either my sister or I have to do it for him. Usually it's me because I'm far more tolerant than my sister. Recently I've had to lodge our Power of Attorney with the local hospital because they weren't listening to us. (Why listen to family?) That was a day of phone calls back & forth, mostly speaking to secretaries, who couldn't have been more helpful.
Speaking of Power of Attorney - if you have older parents, get Power of Attorney organised & agreed well before you need it. Make it while their decision making capabilities cannot be called into question and get them to draw up their Wills.
It is uncomfy to entertain the idea that, one day, loved ones won't be capable or won't be around BUT having these things in place before hand saves so much heartache & conflict.
Today he's suffering from having done too much yesterday & yesterday was just a trip to the supermarket. He's puffing quite hard and he's dizzy. So it's been a case of juggling him and mum. Lucky I have long arms LOL
Caring Part 2
There are days when I cook for Mum &, despite the fact I asked her what she wants, she turns away what was requested. It doesn't matter to her that it hurts to stand and scramble her egg or that walking up and down the stairs is an issue. She just takes a whim and refuses what is presented. Not every day, but some days.
It doesn't help that she no longer wears her upper dentures because she can't get to the dentist to have a new mold taken. Yes, the dentist does come to visit, if requested, but, that's another NHS service in which they expect to just be able to turn up, gain access and disappear after saying that they can't do anything apart from clean & scale because she can't get to the office. So, she can't chew as she used to. She also can't hold a fork or a spoon as she used to - forget knives - her right hand has curled in on itself & is, basically, useless now.
Yeah, that was another run in. Trouble is people assume that others know nothing about WAN networks, that no one in the NHS or the local Council is really unconnected these days, so getting a spiel about can't work on one town's client list whilst in another town is a load of tosh.
It used to worry me when Mum refused to eat or drink, she still doesn't drink nearly enough. Apparently that is quite common in the elderly, which in turn leads to increase frequency of cystitis and UTIs. So, I tell Mum to drink more, the doctor tells Mum to drink more but she won't because she doesn't like wearing an incontinence pad and she doesn't like having to ask someone to change her pad, so she just doesn't drink what she should. *sigh*
What's a bod to do? She's an adult, you can't force them to do anything they don't want to do when they know perfectly well why they aren't doing what they are supposed to do.She's not starving. It used to frustrate me, now I no longer have the energy to be frustrated, I just shrug my shoulders & come back downstairs & bin the food.
Incontinence pads - once assessed by the NHS as requiring these you are rationed. Yup, rationed. Maximum ration is 4 day pads and 1 night pad. Boy did I have a fight on my hands with the district nurses about that one! Pads do not prevent infections, if anything they increase the chances of having one. I had a near on screaming match with one DN about that. In the end the arrogant woman threw her hands up & stormed out, I was left with the contact information of the nurse attached to the firm which has the current NHS supply contract. She was the one who explained about the rationing. She was the one who explained about "activating the core" of the pad to ensure maximum absorbency. So, to help prevent recurrent infections, we supplement the NHS supply with Boots own - about £10/£15 a week.
Apparently, though, Mum is lucky in that a) she lives in Scotland where the ration is more generous and b) she doesn't live in a care home/nursing home in England where they are rationed 3 pads a DAY! What a way to treat our older people.
Mum also has days when she just sleeps. If that goes on for more than 24 hours I have to start forcing her awake to get medication down her. If she's got an infection then the sleep isn't restful and she has screaming nightmares - not much fun for her, or us.
I think the hardest part about caring is the lack of information. That's not to say there isn't any information at all but it's a minefield - navigating the GP system, navigating the hospital NHS system, the Social Work system, the care company system, the dental system, the benefits system, the actual information regarding the medical issues each person has - that just serves to highlight the fact that doctors know very little and can only give generalities, but generalities are so broad they don't fit (by definition).
So, while you're trying to keep someone who is semi-hysterical because they can't remember or they can't do what they want or they have to rely on someone else to do everything for them or they have to deal with a progression of strangers staring at them while in a state of undress - you also have to find your way, fight battles you really didn't think you'd have to fight, spend hours on the phone chasing your tail when all you really want to do, because of your own pain, is sit down with a cup of tea and pretend to be on a beach.
I was referred to the Princess Royal Carers Trust. Apparently they support carers. Ah ha. I have no doubt they support some people but I was met by on the one hand a very pleasant easy going person and, on the other, someone who was dictatorial, demanding and outright unpleasant. So much for support.
Social Work say they don't want a carer breakdown situation. I can understand that -I was asked what my main stressors were - lack of time to myself, lack of respite and lack of funds.
Go out for a walk - was the unhelpful reply. I can't walk very far. It ends in pain. Drive somewhere - how do I put fuel in the tank of my car trying to live on £104 a week, when it takes £10 roughly for a return trip anywhere (like the seaside, Edinburgh or up one of the vallies). If I have a break away from my caring duties which leaves less than 35 hours in any week when I care, I have to declare it and I lose money. I can't afford to take a break, lose money, pay for the break and keep living. I mean I live in my overdraft - much to dad's disgust (but then he's always been one for not using an overdraft, yes, it's bloody expensive but if you have a low fixed income how are you supposed to clear it?). I lose £30 a month before even sneezing to overdraft charges, I'm just lucky my bank hasn't demanded that I clear the overdraft.
That said, I have been extremely lucky about a month ago. Dad paid for me to have a short break in a caravan in Glen Nevis with my best pal who managed to find time to get away from his life in the States. Dad also, basically, bankrolled the fuel costs - everything else we had to find a way to pay for. The highpoint, the luxury point of the whole 2 weeks - a 90 minute cruise on Loch Lihnne. Imagine that, a loch cruise is the highlight of your whole holiday.
On the day we returned from Glen Nevis it was straight back into the stress more or less as soon as I walked in the door. Such rapid stress gain, after an almost blissful 4 days, was hellish & did a fair bit of damage. Straight back into caring.
What it is to be a carer - from my perspective - part 1
Caring is bloody hard.
Caring means, more or less, putting your life on hold for the comfort, safety and health of another. Caring means sometimes neglecting yourself so someone else might feel a bit better.
No one tells you this before you take on the role. A lot of people think that they do care - never taking time to just talk to someone who may be a bit lonely stuck in a bed or a chair or a house. Let alone thinking "yes, the person I care for needs something and they should be seen to first".
Mum has Parkinsons. She has the tremors, Her legs gradually refused to support her as she moved about and, over the years, she went from using a walking stick, to a wheeled walker to a wheelchair. Our house was not designed for ease of wheelchair access and we don't have a large downstairs bathroom and bedroom. (Caring can require a lot of space because of equipment.) Adapting our house would have cost more than we could have afforded.
Fortunately,at the time, Social Work had a relatively decent budget and I knew the words to use.
That's something else, knowing the words. Begging at the door of Social Work or a charity or whatever trying to get what you need to support the person you care for is not easy. If you don't know the language you'll get nothing, or not enough. Or dealing with the health care system.
So we managed to get a stair lift installed. That was an absolute saviour once she developed Postural Hypo tension (blood pressure dropping suddenly if you are upright or sitting up), because it meant I could get her upstairs and lying down in bed without having to drag her upstairs. We managed to get various small adaptations to the house - grab rails & such.
Before my sister developed spine problems, she and I would, on a semi-regular basis, have to get Mum (who had collapsed on the floor) onto a bath sheet, drag her along the landing into the bedroom and then hoist her onto the bed. If she passed out sitting on the stair lift I could usually just grab her under the arms and drag her along to the bedroom.
I lost count of the number of times I would wake at 3 in the morning to hear her getting out of bed and trying to make it to the stairs to go down to watch TV without disturbing the house. I'd see her safely downstairs, get her settled, get her a drink, organise the TV and then go back to bed (because I was working full time) and sleep with half an ear open to her moving around & falling. I lost count of the number of times I had to get her off the floor.
Unfortunately, all this took its toll. My muscles in my shoulders, back and upper chest started to rip. The muscles in my back started to spasm.
By this point, mum needed constant supervision, but dad was around and he was relatively capable of keeping her upright - if she fell, that was a call to me. She needed help showering, dressing, toileting (though she wasn't incontinent yet).
10 years after Mum was first diagnosed with Parkinsons, I became ill myself. 3 years after that we had to call Social Work and have her and us assessed. Fortunately, Scotland has Free Personal Care for the Elderly, so there was no charge for the 4 visits a day by 2 workers. Still, if she fell, there was only me, and sometimes my sister, to get her off the floor.
I became very frustrated with the NHS, who have this assumption that, if a person is fit to be discharged, then they will not provide help in getting someone home. Let me tell you what getting someone unable to walk independently home means for us.
Wheelchair from ward to car. Lift Mum from wheelchair into car. Fold up wheelchair into the boot. Drive home. Get wheelchair out boot, lift Mum from car into wheelchair. Wheel into house (fortunately we had a stair climbing wheelchair). Lift Mum from wheelchair to stair-lift chair. Skedaddle up the stairs ahead of said stair lift chair. At top of stairs lift her out of stair lift chair and onto the wheeled walker, wheel into bedroom. Undress from day clothes, dress in bedclothes, lift from wheeled walker and settle on bed.
No help from NHS or anyone else. I really feel for the people who do not have someone who can do these things.
Then, one day, the ancient and creaking stair lift gave up the ghost.
Now? Now I juggle looking after the house, as I am physically able to do, chase medical issues, put up with Social Work reviews, care reviews, District Nurses trying to tell me that what I am doing is wrong and "how dare the door not be open when they want to visit", balancing the needs of a doubly incontinent person with provision of all sorts of things like baby wipes, various creams and salves. Having to negotiate the cumbersome system of getting to talk to a GP. And praying that nothing goes awry when the preferred GP is unavailable.
Then there's the emotional issue. Looking after a parent requires a detachment and a redefining of the roles. Mum has various personalities now, she isn't "just" my Mum any more she's also a wilful and manipulative child who can say some dreadfully hurtful things, she forgets day to day, hour to hour her situation and I have found her trying to get out of bed.
What's funny is siblings come to visit, Mum makes an effort, seems to have a grand conversation and said siblings come downstairs to announce that "she's fine, you're obviously exaggerating her condition" is quite bemusing. It used to be hurtful but now I just don't have enough energy to care that much. What's laughable is I go upstairs, after they've gone, and Mum looks at me and says "who were those people?" She had not recognised her eldest son, daughter-in-law nor their grown-up children.
I could scream at her, get angry at her for getting old and ill but why? It's life, it happens, in some ways I am lucky still to have Mum around. But, being asked by your mother to give her enough tablets so she can end her life is not at all easy to hear. Knowing I can't do it because then I risk imprisonment hurts all the more.
I could get frustrated - indeed, there are bad pain days when I do get frustrated and angry - because there is so little space for "me". I haven't been able to go outside much because dad doesn't hear if Mum needs something, so I stay in the house and listen. This means I've developed psoriasis (stress as well as lack of sunlight).
I do get time to myself - between waking at 4 or 5 a.m.(pain you know) and starting to prepare breakfast around 7. I try to go out most mornings after the carers have been since Mum likes to nap after their morning visit. And then, after the 8:30/9 p.m. medication and night pad change, I can do nothing.
Life as a carer is not easy. Admittedly some people do far less than I do. Admittedly some people have a far more intense life than I do. But, if you have any spark of caring/empathy it's not easy.
Caring means, more or less, putting your life on hold for the comfort, safety and health of another. Caring means sometimes neglecting yourself so someone else might feel a bit better.
No one tells you this before you take on the role. A lot of people think that they do care - never taking time to just talk to someone who may be a bit lonely stuck in a bed or a chair or a house. Let alone thinking "yes, the person I care for needs something and they should be seen to first".
Mum has Parkinsons. She has the tremors, Her legs gradually refused to support her as she moved about and, over the years, she went from using a walking stick, to a wheeled walker to a wheelchair. Our house was not designed for ease of wheelchair access and we don't have a large downstairs bathroom and bedroom. (Caring can require a lot of space because of equipment.) Adapting our house would have cost more than we could have afforded.
Fortunately,at the time, Social Work had a relatively decent budget and I knew the words to use.
That's something else, knowing the words. Begging at the door of Social Work or a charity or whatever trying to get what you need to support the person you care for is not easy. If you don't know the language you'll get nothing, or not enough. Or dealing with the health care system.
So we managed to get a stair lift installed. That was an absolute saviour once she developed Postural Hypo tension (blood pressure dropping suddenly if you are upright or sitting up), because it meant I could get her upstairs and lying down in bed without having to drag her upstairs. We managed to get various small adaptations to the house - grab rails & such.
Before my sister developed spine problems, she and I would, on a semi-regular basis, have to get Mum (who had collapsed on the floor) onto a bath sheet, drag her along the landing into the bedroom and then hoist her onto the bed. If she passed out sitting on the stair lift I could usually just grab her under the arms and drag her along to the bedroom.
I lost count of the number of times I would wake at 3 in the morning to hear her getting out of bed and trying to make it to the stairs to go down to watch TV without disturbing the house. I'd see her safely downstairs, get her settled, get her a drink, organise the TV and then go back to bed (because I was working full time) and sleep with half an ear open to her moving around & falling. I lost count of the number of times I had to get her off the floor.
Unfortunately, all this took its toll. My muscles in my shoulders, back and upper chest started to rip. The muscles in my back started to spasm.
By this point, mum needed constant supervision, but dad was around and he was relatively capable of keeping her upright - if she fell, that was a call to me. She needed help showering, dressing, toileting (though she wasn't incontinent yet).
10 years after Mum was first diagnosed with Parkinsons, I became ill myself. 3 years after that we had to call Social Work and have her and us assessed. Fortunately, Scotland has Free Personal Care for the Elderly, so there was no charge for the 4 visits a day by 2 workers. Still, if she fell, there was only me, and sometimes my sister, to get her off the floor.
I became very frustrated with the NHS, who have this assumption that, if a person is fit to be discharged, then they will not provide help in getting someone home. Let me tell you what getting someone unable to walk independently home means for us.
Wheelchair from ward to car. Lift Mum from wheelchair into car. Fold up wheelchair into the boot. Drive home. Get wheelchair out boot, lift Mum from car into wheelchair. Wheel into house (fortunately we had a stair climbing wheelchair). Lift Mum from wheelchair to stair-lift chair. Skedaddle up the stairs ahead of said stair lift chair. At top of stairs lift her out of stair lift chair and onto the wheeled walker, wheel into bedroom. Undress from day clothes, dress in bedclothes, lift from wheeled walker and settle on bed.
No help from NHS or anyone else. I really feel for the people who do not have someone who can do these things.
Then, one day, the ancient and creaking stair lift gave up the ghost.
Now? Now I juggle looking after the house, as I am physically able to do, chase medical issues, put up with Social Work reviews, care reviews, District Nurses trying to tell me that what I am doing is wrong and "how dare the door not be open when they want to visit", balancing the needs of a doubly incontinent person with provision of all sorts of things like baby wipes, various creams and salves. Having to negotiate the cumbersome system of getting to talk to a GP. And praying that nothing goes awry when the preferred GP is unavailable.
Then there's the emotional issue. Looking after a parent requires a detachment and a redefining of the roles. Mum has various personalities now, she isn't "just" my Mum any more she's also a wilful and manipulative child who can say some dreadfully hurtful things, she forgets day to day, hour to hour her situation and I have found her trying to get out of bed.
What's funny is siblings come to visit, Mum makes an effort, seems to have a grand conversation and said siblings come downstairs to announce that "she's fine, you're obviously exaggerating her condition" is quite bemusing. It used to be hurtful but now I just don't have enough energy to care that much. What's laughable is I go upstairs, after they've gone, and Mum looks at me and says "who were those people?" She had not recognised her eldest son, daughter-in-law nor their grown-up children.
I could scream at her, get angry at her for getting old and ill but why? It's life, it happens, in some ways I am lucky still to have Mum around. But, being asked by your mother to give her enough tablets so she can end her life is not at all easy to hear. Knowing I can't do it because then I risk imprisonment hurts all the more.
I could get frustrated - indeed, there are bad pain days when I do get frustrated and angry - because there is so little space for "me". I haven't been able to go outside much because dad doesn't hear if Mum needs something, so I stay in the house and listen. This means I've developed psoriasis (stress as well as lack of sunlight).
I do get time to myself - between waking at 4 or 5 a.m.(pain you know) and starting to prepare breakfast around 7. I try to go out most mornings after the carers have been since Mum likes to nap after their morning visit. And then, after the 8:30/9 p.m. medication and night pad change, I can do nothing.
Life as a carer is not easy. Admittedly some people do far less than I do. Admittedly some people have a far more intense life than I do. But, if you have any spark of caring/empathy it's not easy.
Introduction
Let's start at the beginning, a very good place to start (according to a rather famous song lol).
I'm 48 years old, this year. I worked in a paid job for 27 of those years and now I look after my mother as her official carer. Mum is bed-bound with Parkinsons and Postural Hypotension. I also look after dad, who was diagnosed with severe congestive heartfailure a couple of months ago, but to a lesser extent. I'm also chronically ill - pernicious anaemia (I'm one of those people who is literally gagging for their next "fix" of B12), various forms of arthritis, and fibromyalgia.
Most people haven't heard of fibromyalgia. Basically it's varying degrees of joint and muscle pain 24/7 365. Plus a foggy head, making recollection of information difficult, and chronic near exhaustion. (Exacerbated by falling levels of B12.) Plus chronic sinusitis - which makes the foggy head all the worse. All these things vary from hour to hour, day to day and get exacerbated by anger, frustration, worry. If you want an idea about dealing with fibro - if you've ever been on a long haul flight & exerpienced jetlag - feeling so very tired, unable to focus, your body feels like it weighs a ton then add in the muscle & joint pain you get during & after a really bad bout of flu :- there ya go!
I'm not married or have a romantic partner, so I have to deal with everything myself. Why do I not have one - loads of reasons, mostly because the ones I thought felt a similar way to how I felt, turned out not to. These days just dealing with what I have to deal with is more than enough - adding a romantic layer into that, setting up conflicts between needs. . . no thank you. Though, there are times, when the world lies heavily on my shoulders, I do so wish I had someone to hold me & tell me that I'm doing fine. *sigh*
I have no children - for various reasons I'm not going into here. I do have, currently, 5 cats - 2 elderly, 1 diabetic, 1 with 3 legs and the newest addition (who may, or may not be staying), a youngish tomcat.
The government pays me £104 a week - why should the government pay me to look after my mother? Because if I didn't both she & dad would be in a nursing home costing £1000+ a week - they want/promote care in the community, this is how the do it.
I'll not get that for much longer because they only pay you the Income Support part of the payment (roughly £40) for 3 years after your National Insurance contributions ceased - so that'll be end of Sept this year. After that, I am financially fucked - no one can live on £64 a week. And, depending on which political party gets into power after today's election, I could be even worse off. Fortunately (and I am in a very fortunate position in this respect) Mum and Dad help out from time to time.
We do have carers who come in 4 times a day, usually they do the heavy stuff like moving Mum up the bed & changing sheets & all that. Sometimes I still have to do it. Some of the carers are brilliant, some are less so.
The most contentious (to my family at least) part of my life is the fact that I am Shaman. I don't eat children, I don't sacrifice animals, I don't participate in orgies, I don't dance naked under a full moon in a convenient grove of trees. I don't worship devils or Satan (I don't believe in either). I actually believe that all life is sacred (yes, I eat meat), I believe that everything has a spirit (yes, including rocks). I don't have a "god", I have spirit guides. I don't have a church - why have a building when nature is the cathedral? I don't have to have another person (i.e. a priest) intercede between me and my Guides. I don't cast spells (that's Wicca). My parents are fine with my spiritual choice (yes, spiritual not religious), one of my brothers keeps informing me I am going to hell, one of my sister-in-laws has trouble bringing herself to talk to me (& when she does she treats me as a misguided 10 year old).
I've spent years keeping my spiritual belief preference quiet because I knew some of my siblings &/or in-laws/nieces/nephews would find it hard to take. So, why now? Well, conflict between siblings no longer matters as much, conflict/disapproval of in-laws who only make an appearance when there is an issue . . . it doesn't matter much any more. Or, in other words, I'm fed up hiding it. By the same token, I will never rub anyone's face in my belief system. Systems of faith are highly personal, what works for one may not work for another. Finding one which fits you can take a lifetime or you can find it straight away: and I am perfectly fine with that (unlike others). Questions, if sincerely asked, will be answered. Anything else will be ignored.
So, why mention it? Because, as with any faith system, it keeps me grounded and keeps me going.
The balancing act of being me is, as it is with many others, one of tightrope walking.
I'm 48 years old, this year. I worked in a paid job for 27 of those years and now I look after my mother as her official carer. Mum is bed-bound with Parkinsons and Postural Hypotension. I also look after dad, who was diagnosed with severe congestive heartfailure a couple of months ago, but to a lesser extent. I'm also chronically ill - pernicious anaemia (I'm one of those people who is literally gagging for their next "fix" of B12), various forms of arthritis, and fibromyalgia.
Most people haven't heard of fibromyalgia. Basically it's varying degrees of joint and muscle pain 24/7 365. Plus a foggy head, making recollection of information difficult, and chronic near exhaustion. (Exacerbated by falling levels of B12.) Plus chronic sinusitis - which makes the foggy head all the worse. All these things vary from hour to hour, day to day and get exacerbated by anger, frustration, worry. If you want an idea about dealing with fibro - if you've ever been on a long haul flight & exerpienced jetlag - feeling so very tired, unable to focus, your body feels like it weighs a ton then add in the muscle & joint pain you get during & after a really bad bout of flu :- there ya go!
I'm not married or have a romantic partner, so I have to deal with everything myself. Why do I not have one - loads of reasons, mostly because the ones I thought felt a similar way to how I felt, turned out not to. These days just dealing with what I have to deal with is more than enough - adding a romantic layer into that, setting up conflicts between needs. . . no thank you. Though, there are times, when the world lies heavily on my shoulders, I do so wish I had someone to hold me & tell me that I'm doing fine. *sigh*
I have no children - for various reasons I'm not going into here. I do have, currently, 5 cats - 2 elderly, 1 diabetic, 1 with 3 legs and the newest addition (who may, or may not be staying), a youngish tomcat.
The government pays me £104 a week - why should the government pay me to look after my mother? Because if I didn't both she & dad would be in a nursing home costing £1000+ a week - they want/promote care in the community, this is how the do it.
I'll not get that for much longer because they only pay you the Income Support part of the payment (roughly £40) for 3 years after your National Insurance contributions ceased - so that'll be end of Sept this year. After that, I am financially fucked - no one can live on £64 a week. And, depending on which political party gets into power after today's election, I could be even worse off. Fortunately (and I am in a very fortunate position in this respect) Mum and Dad help out from time to time.
We do have carers who come in 4 times a day, usually they do the heavy stuff like moving Mum up the bed & changing sheets & all that. Sometimes I still have to do it. Some of the carers are brilliant, some are less so.
The most contentious (to my family at least) part of my life is the fact that I am Shaman. I don't eat children, I don't sacrifice animals, I don't participate in orgies, I don't dance naked under a full moon in a convenient grove of trees. I don't worship devils or Satan (I don't believe in either). I actually believe that all life is sacred (yes, I eat meat), I believe that everything has a spirit (yes, including rocks). I don't have a "god", I have spirit guides. I don't have a church - why have a building when nature is the cathedral? I don't have to have another person (i.e. a priest) intercede between me and my Guides. I don't cast spells (that's Wicca). My parents are fine with my spiritual choice (yes, spiritual not religious), one of my brothers keeps informing me I am going to hell, one of my sister-in-laws has trouble bringing herself to talk to me (& when she does she treats me as a misguided 10 year old).
I've spent years keeping my spiritual belief preference quiet because I knew some of my siblings &/or in-laws/nieces/nephews would find it hard to take. So, why now? Well, conflict between siblings no longer matters as much, conflict/disapproval of in-laws who only make an appearance when there is an issue . . . it doesn't matter much any more. Or, in other words, I'm fed up hiding it. By the same token, I will never rub anyone's face in my belief system. Systems of faith are highly personal, what works for one may not work for another. Finding one which fits you can take a lifetime or you can find it straight away: and I am perfectly fine with that (unlike others). Questions, if sincerely asked, will be answered. Anything else will be ignored.
So, why mention it? Because, as with any faith system, it keeps me grounded and keeps me going.
The balancing act of being me is, as it is with many others, one of tightrope walking.
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