just been reading my old posts , how much has changed since then, I've been looking after my nannasince 21, I'm 29 now, she is my everything & always will be, since I last posted on here I thought things was bad then, looking back that was literally the beginning, so we're so I start (try & remember)
Ripping of clothes, one point she would rip every tshirt,jumper she had on everyday, had to go and buy her new ones every week to replace, quiet funny looking back now, how she would find the litteslt thread & then goes the whole tshirt shredded to bits lol. At the time the Hoover was out every time cleaning up the mess.
Going around the local supermarket, she would be fine walking about holding the trolley, soon as it came to the check out and we had to wait that's when she would kick off and storm away many times I had to leave the checkout and all food packed and apologise n run after her (bet the checkout lady was fuming, oh well!)
Getting into the car also another nightmare, specially at the daycentre as she wouldn't go on the bus as every time it stopped to pick other citizens up she thought she was getting off so this caused drama for the driver & those with capacity! So I had to take and fetch her each time running around chasing her trying to bribe her with a cigarette (she used to smoke before, and loved doing so, that was my trick at the time, 90% of the time it worked)
So she was at the day centre three times per week, this gave me a break & I was able to work part time, as a few years went out, the day centre basically kicked her out, said she was becoming violent towards others, a lie I believe as the day centre didn't facilitate for dementia suffers she was at the point were she just wanted to walk around and be active (I now know this is so good for her brain) and they couldn't handle her so used that poor excuse & literally kicked her out... big complaint to LA & got the days she meant to go their to sitting service at home through a PA, more person centred,in her own surroundings and a lot cheaper for LA, sittings worked really well as I fount two PAs who are amazing with my grandma and still care for her now (same routine 3 years on), this October it will be three years since she forgot how to feed herself & hold a cup to drink, this was out the blue I simply thought she wasn't that hungry and wasn't eating. It really she had forgotten.
Luckily she still lets us feed her (although she can grip her lips closed at some points of dinner time) again we work around that and give her a drink, so since then we also had to give her fluids through a syringe,just a normal pharmacy one, so anyone struggling with beakers,cups,straws try a syringe (what you get with oral paracetamol).
Bathing has never really been an issue as I've always kept to a routine, shower every morning,hair washed,teeth brushed, much prefer showering her to strip wash, like to know she's clean & smelling fresh.
(Trying to think what else.......)
Incontinence became an issued, urinating around the house, confused, never a issue cleaning it up, just sad to think it was time for incontinence pads, then she became double incontience, get the right pads & issue solved , even could Time what time her pads would need changing, that's how much of a routine we would be in. I really do believe routine helps,familiar faces & their own environmental massively.
Vocally her conversation deteriorated & was all in her own words & we just used to agree & talk back as normal (never question or disagree with a dementia suffer, makes things a lot frustrating for them, learnt that in the beginning)
So now the last few years, it's still been the same set routine of making sure everything is done by clock (dinner time,ect, I hate the clock I love my life by it!!)
We then had to make sure she was supervised walking holding hands at all times as she was at risk of falls as she was stumbling, again with the assistance of PA's on there shift this was done every hour, then by myself, always been so scared she would forget how to walk and that would be it... bed sound, and that's the last thing I wanted to see her like ... and I know that day will come, but I'll try my best to do whatever I can to help that day come!
Walking became quiet an issue as , luckily no issues with falls, as she has always been assisted,
Always took her out when I could, travel sickness became an issue, oh gosh the sick that would come out, but I could do nothing but feel sorry for her & clean it up, & make sure she was ok, I tried everything, windows down,no coat on to feel hot, seat high so she could see out the window, I did get some travel sickness tablets from holland & barret they really worked, if you're having the same issue.
So what else.....
Foods now have to be blended as she was storing solids in the side of her mouth so now have to blend all foods, I make them fresh & freeze much better than the ready meals I used to buy. Give her all mixture of fluids I must go through 6+ cartons on cranberry juice a week, this apparently helps prevent UTI's and also lemon water (cut lemons up & put in water) I always used to know if she had a UTI as she would ever sleep at night, and trying to get a sample out of her pad..... nightmare, no DN or GP would understand the lengths I would have to go through to get a sample, using a Newcastle pad inside her pad having to syringe it out into a bottle, get it to the doctors by a certain time, and although they know her conditions they would never understand why the bottle of urine wasn't ever full!!! So if you do need to get a sample use Newcastle pads, if your DN don't have them, they're on Evay for £5.
So the last few years we have been sailing (as I like to call it) she hasn't deteriorated that much, just the walking, everything else seemed quiet smooth. And believe me I would pray near enough every night thanking god!
So July 7th 2017, 4:20AM I hear a sound of choaking coming from her bedroom, run in, see what I thought looked like her having a stroke, done everything I could to ensure she didn't chose,stop breathing, ambulance came within 10 minutes, she's never had to go to hospital in all the time I've cared for her so the thought of her having to go scared the life out of me as I have this massive ear (you go in you never come out) so I declined them not to take her and I later next to her until I phoned the GP that morning to come and check on her to make sure she was ok, after the trazadone wore off and she was fully awake & I notice her right leg bending to the right (something isn't right) GP advised she hasn't done anything to her leg/hip, keep an eye on her phone back Monday... so I followed his instructions..... Monday came, her usual GP who's known her for 20+ years & I often speak to her and she really is helpful, soon as she seen her she said she had broken her hip.... my heart stopped...(omg she has to go to hospital. That's it she's never coming home alive) as you can imagine I'm crying inside,ghost white on the outside, shaking, I'm losing her.
So the ambulance was phone at 15:30, it arrived at 20:00.... disgusted. But what can I do?
Get to the local hospital, waiting around in A&E with every other person,drunk,hurt,whatever else (I do believe there should be a seepage section for A & D suffers to ensure they're aren't scared,more confused) CT,XRay all done... ward doctor comes along, as I expected her hip had broken, how? She hasn't had any falls, at all, was fine the day,previous days, he told me the trauma of the stroke cause the hip to pop out & break. Couldn't believe this could happen and never heard of it before, as you believe when someone breaks their hip it's due to a fall. So another thing learnt,
So that was that, I'm now thinking what I think about hospitals.... that's it she's gone!
The surgeon came to speak to use & informed us she would be put on a orthopaedic ward, for dementia patients, she will be bed bound after OP, and only live for 12 months, due to the result of her CT scan (the last one was 2009!!),all the negative sides to the OP also,as DRN is in place (that made me think should I of put it in place should I of not, is this going to be my fault, if they don't resuscitate?) as you can imagine I'm heart broken all I've ever not wanted and tried to prevent was going to happen.
So we get to the ward at 4AM, the staff was amazing, all I asked for was please just let me live there with her, let me do everything I would at home, do there. They agreed , so thankful, the only time I left her side was when she had her OP, they wouldn't let me go in I came home & prayed & cried and just prayed please don't let her leave me , and those was the last words I said to her aswell as love you. I still can't remember leaving the hospital, it was a blur!
So after OP, she came around well all went well, I done everything for her as I promised, feed,fluids,washed,gave her medication,they didn't want me to leave by the time it was ready for her to come home, so she recovered well, I was determined to get her back on her feet and walking again, obviously doing this safely, and she took three steps! I had a lump in my throat as I knew she could do it & show that surgeon that strong,independent woman she used to be!! So as the days went by I worked with the Physio's few more steps each day trying to beat the steps taken the day before, she was recovering & doing so well.
8 days later she steady for discharge! (In my head that's all I've wanted is to get her home, yes!!) coming home at 11pm every night just to sleep to get back up to the hospital for 7AM those few hours me being home & her not I couldn't even go in her bedroom! As we have a Direct payment package in place I was able to ask to bring her home with the help of friends helping me with personal care as I believed I needed help and increase to her package, when social services was coming to see us? No one knew, so that's it I'm taking her home,risk of deteriorating,infection. We can deal with SS when I'm home, again this is why they're no beds, hospitals are waiting for SS to get packages/increases in place & get the citizens home... no SS to be seen!!! So we organised transport for 17:00, it came at 21:30. I didn't care I just wanted her home and made sure she was wrapped in 4 blankets to keep her warm and comfy! So she's home! Oh & by the way had to argue with the doctor to keep her catheter in as she would of been at risk of skin breakdown as I wouldn't of been able to change her pad four times per day like we used to, it got agreed in the end, and the only risk is a UTI, so my argument was ... with a catheter in you can get more fluids down, keep that area clean through the day, she won't be sat in a wet pad, me struggling to change her or possible can't, so don't always think the doctors are right, you know your loved one & Now what's best interest for them.
So we're home, upstairs existence as her bed is already up there , had to wait 8 days for red cross to move her chair from down to up, no way! That got moved the night she came home, not having her in bed that long, although the correct pressure mattress, I'm still so worried she will get bed sores. So again that could of been a delay!
So a week after being home Rehablement team come (physio) here for 30 minutes, she cannot respond to our instructions and we cannot physically move her leg... sorry we cannot do anything!...
I'm disgusted I've been given false hope by the hospital thinking she would get the right help at home, so I ensured they left us two pieces of exercise sheets & told them to leave & let us get on with it. Lower the bed the more she would benefit and exercise so four times per day with the help of friends we would exercise her stand sitting, walking little steps (not a lot of room sadly in her bedroom, frustrating!! Need a long hallway!!)& still to this day 6 weeks on we're doing the exercises daily and walking her (two of us for safety) & it really has worked.
Still no SS to be seen, a week after that I get a phone call, SS got the package and want to visit,
Soon as we had a conversation money was mentioned..... LA no money, already on a good package funded by LA, feel this should be funded 50/50 & 24 hour care needed, need to turn to NHS continuing care , again never heard of this option, assessment done DST done... outcome... no needs meet the criteria, all her needs come under social needs not health (NHS) so social worker now needs to find money! (My words to him,I want this sorting, been waiting long enough & anyone who is classed as bed bound on paper would be cared for by two carers! Still no increase met even if it was for personal care, so still relying on friends to help (where would I be without them?so lucky!!) so still no increase, breakdown in communities on with the SW, have a meeting tomorrow with Original SW & an experience one, so I will be fighting every corner to make sure she gets what she is entitled to & to make sure I'm not isolated,
And the only thing I do miss about that hospital are the staff, being there all day till PM time I got to know them,and was someone to talk to cause only us will know this can become very lonely, and those 9 days at hospital it was nice just to have conversation throughout the day.
So that's my story as I can try and remember as far back to when I was last on here, if I remember more I will add to it, sorry for my bad grammar, but if I've help anyone in any slight way that's all I want,
& pray that she don't leave me & im so lucky she is still here
Ripping of clothes, one point she would rip every tshirt,jumper she had on everyday, had to go and buy her new ones every week to replace, quiet funny looking back now, how she would find the litteslt thread & then goes the whole tshirt shredded to bits lol. At the time the Hoover was out every time cleaning up the mess.
Going around the local supermarket, she would be fine walking about holding the trolley, soon as it came to the check out and we had to wait that's when she would kick off and storm away many times I had to leave the checkout and all food packed and apologise n run after her (bet the checkout lady was fuming, oh well!)
Getting into the car also another nightmare, specially at the daycentre as she wouldn't go on the bus as every time it stopped to pick other citizens up she thought she was getting off so this caused drama for the driver & those with capacity! So I had to take and fetch her each time running around chasing her trying to bribe her with a cigarette (she used to smoke before, and loved doing so, that was my trick at the time, 90% of the time it worked)
So she was at the day centre three times per week, this gave me a break & I was able to work part time, as a few years went out, the day centre basically kicked her out, said she was becoming violent towards others, a lie I believe as the day centre didn't facilitate for dementia suffers she was at the point were she just wanted to walk around and be active (I now know this is so good for her brain) and they couldn't handle her so used that poor excuse & literally kicked her out... big complaint to LA & got the days she meant to go their to sitting service at home through a PA, more person centred,in her own surroundings and a lot cheaper for LA, sittings worked really well as I fount two PAs who are amazing with my grandma and still care for her now (same routine 3 years on), this October it will be three years since she forgot how to feed herself & hold a cup to drink, this was out the blue I simply thought she wasn't that hungry and wasn't eating. It really she had forgotten.
Luckily she still lets us feed her (although she can grip her lips closed at some points of dinner time) again we work around that and give her a drink, so since then we also had to give her fluids through a syringe,just a normal pharmacy one, so anyone struggling with beakers,cups,straws try a syringe (what you get with oral paracetamol).
Bathing has never really been an issue as I've always kept to a routine, shower every morning,hair washed,teeth brushed, much prefer showering her to strip wash, like to know she's clean & smelling fresh.
(Trying to think what else.......)
Incontinence became an issued, urinating around the house, confused, never a issue cleaning it up, just sad to think it was time for incontinence pads, then she became double incontience, get the right pads & issue solved , even could Time what time her pads would need changing, that's how much of a routine we would be in. I really do believe routine helps,familiar faces & their own environmental massively.
Vocally her conversation deteriorated & was all in her own words & we just used to agree & talk back as normal (never question or disagree with a dementia suffer, makes things a lot frustrating for them, learnt that in the beginning)
So now the last few years, it's still been the same set routine of making sure everything is done by clock (dinner time,ect, I hate the clock I love my life by it!!)
We then had to make sure she was supervised walking holding hands at all times as she was at risk of falls as she was stumbling, again with the assistance of PA's on there shift this was done every hour, then by myself, always been so scared she would forget how to walk and that would be it... bed sound, and that's the last thing I wanted to see her like ... and I know that day will come, but I'll try my best to do whatever I can to help that day come!
Walking became quiet an issue as , luckily no issues with falls, as she has always been assisted,
Always took her out when I could, travel sickness became an issue, oh gosh the sick that would come out, but I could do nothing but feel sorry for her & clean it up, & make sure she was ok, I tried everything, windows down,no coat on to feel hot, seat high so she could see out the window, I did get some travel sickness tablets from holland & barret they really worked, if you're having the same issue.
So what else.....
Foods now have to be blended as she was storing solids in the side of her mouth so now have to blend all foods, I make them fresh & freeze much better than the ready meals I used to buy. Give her all mixture of fluids I must go through 6+ cartons on cranberry juice a week, this apparently helps prevent UTI's and also lemon water (cut lemons up & put in water) I always used to know if she had a UTI as she would ever sleep at night, and trying to get a sample out of her pad..... nightmare, no DN or GP would understand the lengths I would have to go through to get a sample, using a Newcastle pad inside her pad having to syringe it out into a bottle, get it to the doctors by a certain time, and although they know her conditions they would never understand why the bottle of urine wasn't ever full!!! So if you do need to get a sample use Newcastle pads, if your DN don't have them, they're on Evay for £5.
So the last few years we have been sailing (as I like to call it) she hasn't deteriorated that much, just the walking, everything else seemed quiet smooth. And believe me I would pray near enough every night thanking god!
So July 7th 2017, 4:20AM I hear a sound of choaking coming from her bedroom, run in, see what I thought looked like her having a stroke, done everything I could to ensure she didn't chose,stop breathing, ambulance came within 10 minutes, she's never had to go to hospital in all the time I've cared for her so the thought of her having to go scared the life out of me as I have this massive ear (you go in you never come out) so I declined them not to take her and I later next to her until I phoned the GP that morning to come and check on her to make sure she was ok, after the trazadone wore off and she was fully awake & I notice her right leg bending to the right (something isn't right) GP advised she hasn't done anything to her leg/hip, keep an eye on her phone back Monday... so I followed his instructions..... Monday came, her usual GP who's known her for 20+ years & I often speak to her and she really is helpful, soon as she seen her she said she had broken her hip.... my heart stopped...(omg she has to go to hospital. That's it she's never coming home alive) as you can imagine I'm crying inside,ghost white on the outside, shaking, I'm losing her.
So the ambulance was phone at 15:30, it arrived at 20:00.... disgusted. But what can I do?
Get to the local hospital, waiting around in A&E with every other person,drunk,hurt,whatever else (I do believe there should be a seepage section for A & D suffers to ensure they're aren't scared,more confused) CT,XRay all done... ward doctor comes along, as I expected her hip had broken, how? She hasn't had any falls, at all, was fine the day,previous days, he told me the trauma of the stroke cause the hip to pop out & break. Couldn't believe this could happen and never heard of it before, as you believe when someone breaks their hip it's due to a fall. So another thing learnt,
So that was that, I'm now thinking what I think about hospitals.... that's it she's gone!
The surgeon came to speak to use & informed us she would be put on a orthopaedic ward, for dementia patients, she will be bed bound after OP, and only live for 12 months, due to the result of her CT scan (the last one was 2009!!),all the negative sides to the OP also,as DRN is in place (that made me think should I of put it in place should I of not, is this going to be my fault, if they don't resuscitate?) as you can imagine I'm heart broken all I've ever not wanted and tried to prevent was going to happen.
So we get to the ward at 4AM, the staff was amazing, all I asked for was please just let me live there with her, let me do everything I would at home, do there. They agreed , so thankful, the only time I left her side was when she had her OP, they wouldn't let me go in I came home & prayed & cried and just prayed please don't let her leave me , and those was the last words I said to her aswell as love you. I still can't remember leaving the hospital, it was a blur!
So after OP, she came around well all went well, I done everything for her as I promised, feed,fluids,washed,gave her medication,they didn't want me to leave by the time it was ready for her to come home, so she recovered well, I was determined to get her back on her feet and walking again, obviously doing this safely, and she took three steps! I had a lump in my throat as I knew she could do it & show that surgeon that strong,independent woman she used to be!! So as the days went by I worked with the Physio's few more steps each day trying to beat the steps taken the day before, she was recovering & doing so well.
8 days later she steady for discharge! (In my head that's all I've wanted is to get her home, yes!!) coming home at 11pm every night just to sleep to get back up to the hospital for 7AM those few hours me being home & her not I couldn't even go in her bedroom! As we have a Direct payment package in place I was able to ask to bring her home with the help of friends helping me with personal care as I believed I needed help and increase to her package, when social services was coming to see us? No one knew, so that's it I'm taking her home,risk of deteriorating,infection. We can deal with SS when I'm home, again this is why they're no beds, hospitals are waiting for SS to get packages/increases in place & get the citizens home... no SS to be seen!!! So we organised transport for 17:00, it came at 21:30. I didn't care I just wanted her home and made sure she was wrapped in 4 blankets to keep her warm and comfy! So she's home! Oh & by the way had to argue with the doctor to keep her catheter in as she would of been at risk of skin breakdown as I wouldn't of been able to change her pad four times per day like we used to, it got agreed in the end, and the only risk is a UTI, so my argument was ... with a catheter in you can get more fluids down, keep that area clean through the day, she won't be sat in a wet pad, me struggling to change her or possible can't, so don't always think the doctors are right, you know your loved one & Now what's best interest for them.
So we're home, upstairs existence as her bed is already up there , had to wait 8 days for red cross to move her chair from down to up, no way! That got moved the night she came home, not having her in bed that long, although the correct pressure mattress, I'm still so worried she will get bed sores. So again that could of been a delay!
So a week after being home Rehablement team come (physio) here for 30 minutes, she cannot respond to our instructions and we cannot physically move her leg... sorry we cannot do anything!...
I'm disgusted I've been given false hope by the hospital thinking she would get the right help at home, so I ensured they left us two pieces of exercise sheets & told them to leave & let us get on with it. Lower the bed the more she would benefit and exercise so four times per day with the help of friends we would exercise her stand sitting, walking little steps (not a lot of room sadly in her bedroom, frustrating!! Need a long hallway!!)& still to this day 6 weeks on we're doing the exercises daily and walking her (two of us for safety) & it really has worked.
Still no SS to be seen, a week after that I get a phone call, SS got the package and want to visit,
Soon as we had a conversation money was mentioned..... LA no money, already on a good package funded by LA, feel this should be funded 50/50 & 24 hour care needed, need to turn to NHS continuing care , again never heard of this option, assessment done DST done... outcome... no needs meet the criteria, all her needs come under social needs not health (NHS) so social worker now needs to find money! (My words to him,I want this sorting, been waiting long enough & anyone who is classed as bed bound on paper would be cared for by two carers! Still no increase met even if it was for personal care, so still relying on friends to help (where would I be without them?so lucky!!) so still no increase, breakdown in communities on with the SW, have a meeting tomorrow with Original SW & an experience one, so I will be fighting every corner to make sure she gets what she is entitled to & to make sure I'm not isolated,
And the only thing I do miss about that hospital are the staff, being there all day till PM time I got to know them,and was someone to talk to cause only us will know this can become very lonely, and those 9 days at hospital it was nice just to have conversation throughout the day.
So that's my story as I can try and remember as far back to when I was last on here, if I remember more I will add to it, sorry for my bad grammar, but if I've help anyone in any slight way that's all I want,
& pray that she don't leave me & im so lucky she is still here
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