Is the “chemical cosh” always the worst thing to do?

[3ll]

My grandma’s dementia is really bad and our whole family is falling apart because of it.

She’s aggressive with the carers and physically fights them (even though she’s completely incontinent and cannot do anything for herself).

We’ve tried everything to get her to enjoy at least part of her day, but she doesn’t. She’s confused, panicked, distressed and shouting at us (unless she’s asleep).

She’s not safe to mobilise and some days can’t get out of bed, yet others she’s determined to stick to her routine and get up first thing, get to the sofa where she mostly naps all day as long as we tip-toe around and don’t wake her. She does however wake up from unavoidable noises or just by herself and tries to wander (falling upon pushing herself up) so cannot be left alone, but if you try to assist she gets nasty. If she feels you are hovering, she gets cross and suspicious and it escalates. Distraction doesn’t work at all.

Her daycentre can’t cope with her anymore.

She fights us at bedtime wanting to remain on the sofa.

She cannot understand us most of the time and we cannot understand her.

She’s refusing most food and medication now too.

We live on eggshells.

The only way she’s not fighting everyone and not in danger is when we’ve given her some Lorazepam (x2 occasssions). That then completely knocks her out. The carers can wake her for sips of water/a snack and to give medication and change/clean her without issue.

We had a rather stuck up nurse visit who told us not to administer it anymore and was almost appalled that she had been given it to begin with.

I did some googling on the back of this and all I could find was some articles about how terrible it is to “sedate” Dementia Patients and how care homes/people do it for an “easy life”, calling it the “chemical cosh”, lazy and pretty much abuse of the patient. I wonder if any of these people have ever cared for a loved one and seen how truly awful this illness is and the daily trauma it causes the patient (and their families). I get that there are abuses of this going on and it absolutely should be highlighted, but surely not every single situation is?

To me, being in this situation and watching my loved one so distressed and at risk all the time, it seems like the kindest and safest thing to do for her.

Of course it makes my life easier as I’m not being abused and nor are the rest of our family and her carers. We’re not lazy, abusive people and we have bent over backwards to help and care for her since the pandemic.

My issue it that my grandma is not enjoying her life one tiny bit, not even for a minute. She’s confused, distressed, paranoid, afraid, angry, lashing out and unsafe to be left alone. So is “letting her be”, “being patient”, “being kind”, “trying to engage her in activities” that she absolutely doesn’t want to do still worth persisting?

We never got the chance to discuss what to do with my grandma because the GP/hospital didn’t bother to follow up when they suspected Dementia to suggest planning for the bad times whilst we still could. We’d never dealt with it before and sadly knew no better and we’re not involved in her medical care until recently.

I’ve read a lot of posts on here where patient’s families are being asked to find them new care facilities because they can’t cope or that the GP has to prescribe something to “sedate them” if they are to stay. These people seem so destroyed by the prospect of sedation or at their wits end with trying to find another care facility.

Given the choice, would it not be far kinder to sedate them at home knowing that you can keep an eye on everything to make sure they are absolutely and undoubtedly cared for in their own environment surrounded by their family and carers?

If someone were to ask me now as a person of sound mind what I’d prefer, I would tell them to sedate me so I wasn’t distressed and that I wouldn’t want to put anyone through the trauma of having to try and manage me in that state (potentially for many years). I would much rather sleep peacefully, be kept safe and to know that my partner, children and grandchildren’s lives were not all on hold. That they were not afraid of me and me of them. That all their memories of me were of the good times, not buried or erased the worst.

Am I completely crazy for having this view? I feel a bit like Alice at the Mad Hatters tea party - To me it seems like common sense. Whilst initially feeling shamed by the Nurse and what I found online, I now find myself feeling quite angry that these people can dare criticise those of us who are doing our best to care for loved ones in the best way we can whilst sacrificing our own lives and being left physically and emotionally destroyed.

I only found this forum last night so please forgive me if this is completely inappropriate - I’ve been catapulted from dealing with mild Dementia into the deep end here and am trying to educate myself very quickly from information online (GP/Hospital are useless).

They said they’ll do a MH referral which will no doubt take months. I left my home (which I still have and am paying the mortgage on) to take care of my grandma. I work full time from home and have a young child. I have carers coming in four times a day who are amazing.

I am drowning and I know the current situation is unsustainable. I’m desperate and in shock at where as a family we have found ourselves.

 

[lollyc]

My grandma’s dementia is really bad and our whole family is falling apart because of it.

She’s aggressive with the carers and physically fights them (even though she’s completely incontinent and cannot do anything for herself).

We’ve tried everything to get her to enjoy at least part of her day, but she doesn’t. She’s confused, panicked, distressed and shouting at us (unless she’s asleep).

She’s not safe to mobilise and some days can’t get out of bed, yet others she’s determined to stick to her routine and get up first thing, get to the sofa where she mostly naps all day as long as we tip-toe around and don’t wake her. She does however wake up from unavoidable noises or just by herself and tries to wander (falling upon pushing herself up) so cannot be left alone, but if you try to assist she gets nasty. If she feels you are hovering, she gets cross and suspicious and it escalates. Distraction doesn’t work at all.

Her daycentre can’t cope with her anymore.

She fights us at bedtime wanting to remain on the sofa.

She cannot understand us most of the time and we cannot understand her.

She’s refusing most food and medication now too.

We live on eggshells.

The only way she’s not fighting everyone and not in danger is when we’ve given her some Lorazepam (x2 occasssions). That then completely knocks her out. The carers can wake her for sips of water/a snack and to give medication and change/clean her without issue.

We had a rather stuck up nurse visit who told us not to administer it anymore and was almost appalled that she had been given it to begin with.

I did some googling on the back of this and all I could find was some articles about how terrible it is to “sedate” Dementia Patients and how care homes/people do it for an “easy life”, calling it the “chemical cosh”, lazy and pretty much abuse of the patient. I wonder if any of these people have ever cared for a loved one and seen how truly awful this illness is and the daily trauma it causes the patient (and their families). I get that there are abuses of this going on and it absolutely should be highlighted, but surely not every single situation is?

To me, being in this situation and watching my loved one so distressed and at risk all the time, it seems like the kindest and safest thing to do for her.

Of course it makes my life easier as I’m not being abused and nor are the rest of our family and her carers. We’re not lazy, abusive people and we have bent over backwards to help and care for her since the pandemic.

My issue it that my grandma is not enjoying her life one tiny bit, not even for a minute. She’s confused, distressed, paranoid, afraid, angry, lashing out and unsafe to be left alone. So is “letting her be”, “being patient”, “being kind”, “trying to engage her in activities” that she absolutely doesn’t want to do still worth persisting?

We never got the chance to discuss what to do with my grandma because the GP/hospital didn’t bother to follow up when they suspected Dementia to suggest planning for the bad times whilst we still could. We’d never dealt with it before and sadly knew no better and we’re not involved in her medical care until recently.

I’ve read a lot of posts on here where patient’s families are being asked to find them new care facilities because they can’t cope or that the GP has to prescribe something to “sedate them” if they are to stay. These people seem so destroyed by the prospect of sedation or at their wits end with trying to find another care facility.

Given the choice, would it not be far kinder to sedate them at home knowing that you can keep an eye on everything to make sure they are absolutely and undoubtedly cared for in their own environment surrounded by their family and carers?

If someone were to ask me now as a person of sound mind what I’d prefer, I would tell them to sedate me so I wasn’t distressed and that I wouldn’t want to put anyone through the trauma of having to try and manage me in that state (potentially for many years). I would much rather sleep peacefully, be kept safe and to know that my partner, children and grandchildren’s lives were not all on hold. That they were not afraid of me and me of them. That all their memories of me were of the good times, not buried or erased the worst.

Am I completely crazy for having this view? I feel a bit like Alice at the Mad Hatters tea party - To me it seems like common sense. Whilst initially feeling shamed by the Nurse and what I found online, I now find myself feeling quite angry that these people can dare criticise those of us who are doing our best to care for loved ones in the best way we can whilst sacrificing our own lives and being left physically and emotionally destroyed.

I only found this forum last night so please forgive me if this is completely inappropriate - I’ve been catapulted from dealing with mild Dementia into the deep end here and am trying to educate myself very quickly from information online (GP/Hospital are useless).

They said they’ll do a MH referral which will no doubt take months. I left my home (which I still have and am paying the mortgage on) to take care of my grandma. I work full time from home and have a young child. I have carers coming in four times a day who are amazing.

I am drowning and I know the current situation is unsustainable. I’m desperate and in shock at where as a family we have found ourselves.

My Mum had Mirtazapine, Quetiapine, and Lorazapam when necessary. Without she was anxious, tearful and we had episodes when she talked constantly (and I mean constantly, for hours on end, to the point that she wouldn't stop long enough to eat.) People who have not lived with this really have absolutely no idea what it is like. You cannot distract or ignore, whatever you try. Personally, I do not consider it a kindness to allow a person to live in a constant state of anger / anxiety / distress.
I did have a battle with the GP , mainly due to the perceived falls risk , although they were more than happy for her to have blood pressure medication which also increased the risk. I'm afraid at one point I actually said "What are you trying to preserve her life for? So that she is forced to live in this terrible state for even longer?" GP had no answer to that.

 

[SAP]

Your post is not inappropriate, you are clearly at the end of your tether and feeling carer burnout.
Has anyone suggested that your grandma goes into residential care? Is this something you would consider?
My mum was on Lorazepam when she was still in her own home and fighting with her carers but they only gave it twice because it knocked her out. She went into residential care and for a year was fine then out of the blue she had aggressive outbursts and became violent and so the Lorazepam was administered again for a day or two. From there she went to a mental health unit in a hospital and from there into a new care home where for the past 18 months she has only had her blood pressure tablets and not needed anything else. The point is this is how some forms of dementia suddenly change and the right care is just as important as the right meds. If this is getting to crisis point then social services need to be told there is a safeguarding issue , that usually gets things moving along quicker . Whether it’s different care at home , different meds or something else it needs to happen sooner rather than later and it’s the professionals who need to take the lead.
Oh and as for that nurse, if they are so clever what have they done to support your family huh?

 

[3ll]

Your post is not inappropriate, you are clearly at the end of your tether and feeling carer burnout.
Has anyone suggested that your grandma goes into residential care? Is this something you would consider?
My mum was on Lorazepam when she was still in her own home and fighting with her carers but they only gave it twice because it knocked her out. She went into residential care and for a year was fine then out of the blue she had aggressive outbursts and became violent and so the Lorazepam was administered again for a day or two. From there she went to a mental health unit in a hospital and from there into a new care home where for the past 18 months she has only had her blood pressure tablets and not needed anything else. The point is this is how some forms of dementia suddenly change and the right care is just as important as the right meds. If this is getting to crisis point then social services need to be told there is a safeguarding issue , that usually gets things moving along quicker . Whether it’s different care at home , different meds or something else it needs to happen sooner rather than later and it’s the professionals who need to take the lead.
Oh and as for that nurse, if they are so clever what have they done to support your family huh?

The nurse came for a palliative assessment and basically said they can’t help at the moment. I asked her who we call when she needs medical intervention so she can be treated at home as we’re sick of calling 999 and sending her to hospital as she just gets worse every time.

We want to make her comfortable at home and make sure there are processes in place without anymore hospital admissions and she just shrugged her shoulders and said to call the GP.

She has so many wounds from falls that get don’t heal and get infected from lack of personal hygiene (despite being dressed). UTI’s (again lack of hygiene). Delirium gets worse with every infection. She is in heart failure so gets fluid build up on her lungs, then they prescribe furosemide which causes kidney issues so they stop that. Then the fluid builds up again so they restart it. Her blood pressure drops, her oxygen saturation drops, she needs oxygen, nebulisers, fluids, catheters for urine retention, IV antibiotics - It’s unreal. All cause admissions and within hours the hospital are calling us to pick her up again.

She had C-Diff during her last admission and we refused to collect her until they could promise the diarrhoea had stopped as she won’t let us clean her and they kept her for a couple of days then promised it had stopped - It hadn’t!

The social care team at the hospital are a joke and keep sending her home without the appropriate care package. The assessment team there as also useless as they keep assessing her as “able to look after herself”. Thankfully we have an amazing care company who support us so much. They help and back us up with reporting safeguarding to SS. I would have lost it by now without them.

I’ve had to walk the GP through a CHC funding application due to all her health needs (mostly resulting from the Dementia causing aggression and non-compliance with the carers and all her medication changes resulting in side effects that require intervention).

I lost it this week and got the GP to reduce her meds to only what was absolutely necessary.

I honestly can’t believe the lack of care for Dementia patients - It’s bleeping disgusting.

 

[TMH]

My grandma’s dementia is really bad and our whole family is falling apart because of it.

She’s aggressive with the carers and physically fights them (even though she’s completely incontinent and cannot do anything for herself).

We’ve tried everything to get her to enjoy at least part of her day, but she doesn’t. She’s confused, panicked, distressed and shouting at us (unless she’s asleep).

She’s not safe to mobilise and some days can’t get out of bed, yet others she’s determined to stick to her routine and get up first thing, get to the sofa where she mostly naps all day as long as we tip-toe around and don’t wake her. She does however wake up from unavoidable noises or just by herself and tries to wander (falling upon pushing herself up) so cannot be left alone, but if you try to assist she gets nasty. If she feels you are hovering, she gets cross and suspicious and it escalates. Distraction doesn’t work at all.

Her daycentre can’t cope with her anymore.

She fights us at bedtime wanting to remain on the sofa.

She cannot understand us most of the time and we cannot understand her.

She’s refusing most food and medication now too.

We live on eggshells.

The only way she’s not fighting everyone and not in danger is when we’ve given her some Lorazepam (x2 occasssions). That then completely knocks her out. The carers can wake her for sips of water/a snack and to give medication and change/clean her without issue.

We had a rather stuck up nurse visit who told us not to administer it anymore and was almost appalled that she had been given it to begin with.

I did some googling on the back of this and all I could find was some articles about how terrible it is to “sedate” Dementia Patients and how care homes/people do it for an “easy life”, calling it the “chemical cosh”, lazy and pretty much abuse of the patient. I wonder if any of these people have ever cared for a loved one and seen how truly awful this illness is and the daily trauma it causes the patient (and their families). I get that there are abuses of this going on and it absolutely should be highlighted, but surely not every single situation is?

To me, being in this situation and watching my loved one so distressed and at risk all the time, it seems like the kindest and safest thing to do for her.

Of course it makes my life easier as I’m not being abused and nor are the rest of our family and her carers. We’re not lazy, abusive people and we have bent over backwards to help and care for her since the pandemic.

My issue it that my grandma is not enjoying her life one tiny bit, not even for a minute. She’s confused, distressed, paranoid, afraid, angry, lashing out and unsafe to be left alone. So is “letting her be”, “being patient”, “being kind”, “trying to engage her in activities” that she absolutely doesn’t want to do still worth persisting?

We never got the chance to discuss what to do with my grandma because the GP/hospital didn’t bother to follow up when they suspected Dementia to suggest planning for the bad times whilst we still could. We’d never dealt with it before and sadly knew no better and we’re not involved in her medical care until recently.

I’ve read a lot of posts on here where patient’s families are being asked to find them new care facilities because they can’t cope or that the GP has to prescribe something to “sedate them” if they are to stay. These people seem so destroyed by the prospect of sedation or at their wits end with trying to find another care facility.

Given the choice, would it not be far kinder to sedate them at home knowing that you can keep an eye on everything to make sure they are absolutely and undoubtedly cared for in their own environment surrounded by their family and carers?

If someone were to ask me now as a person of sound mind what I’d prefer, I would tell them to sedate me so I wasn’t distressed and that I wouldn’t want to put anyone through the trauma of having to try and manage me in that state (potentially for many years). I would much rather sleep peacefully, be kept safe and to know that my partner, children and grandchildren’s lives were not all on hold. That they were not afraid of me and me of them. That all their memories of me were of the good times, not buried or erased the worst.

Am I completely crazy for having this view? I feel a bit like Alice at the Mad Hatters tea party - To me it seems like common sense. Whilst initially feeling shamed by the Nurse and what I found online, I now find myself feeling quite angry that these people can dare criticise those of us who are doing our best to care for loved ones in the best way we can whilst sacrificing our own lives and being left physically and emotionally destroyed.

I only found this forum last night so please forgive me if this is completely inappropriate - I’ve been catapulted from dealing with mild Dementia into the deep end here and am trying to educate myself very quickly from information online (GP/Hospital are useless).

They said they’ll do a MH referral which will no doubt take months. I left my home (which I still have and am paying the mortgage on) to take care of my grandma. I work full time from home and have a young child. I have carers coming in four times a day who are amazing.

I am drowning and I know the current situation is unsustainable. I’m desperate and in shock at where as a family we have found ourselves.

Your post is not inappropriate at all. I totally share your view. We don't let animals suffer like we allow our family to suffer. Like you quite rightly said, it destroys many lives, not just the person with the diagnosis. If I were you and you're trying to manage at home, do what you feel is right, what allows you to be able to cope and to keep your grandma safe. There are too many professionals with opinions but where are they when you are at crisis point? Nowhere. I think you'll find many on this forum share your view x

 

[My Mum's Daughter]

"We had a rather stuck up nurse visit who told us not to administer it anymore and was almost appalled that she had been given it to begin with."

I assume that a doctor prescribed the Lorazepam and told you how often and when it can be administered so I'd listen to him not a nurse.

If I'm with Mum and she starts to get agitated, I can usually manage to stop it but-I don't have her full time, I no longer work and I don't have a young child. A good nursing home may be able to spot the beginning of agitation or aggression and stop it before it escalates but you have too many other important commitments to provide her with this level of attention. This is not a criticism; I think you're a wonderful young lady to step into this caring role but it's too much....just far too much.

I suspect that your holiday will open a few eyes so don't forget to turn your phone off!!!!

 

[Annamalina]

Before my mum was put on anti-psychotic medication she had been on lorazepam for 5 weeks almost daily. Yes, She was heavily sedated because of it and could go without food for up to 5 days. When she was not sedated she was psychotic with aggressive, challenging and suicidal behaviour. Giving her lorazepam was the only option for me to stop psychotic episodes which could sometimes last for up to 12 hours! My mum lives with me. When her psychosis started she had episodes every day sometimes 2-3 times a day. We thought it was just a phase but things got out of control and mum became unmanageable. With hardly any support from her memory clinic lorazepam was my only option to keep her safe and give us some break from this madness. Now she is on anti- psychotic meds which helps and I hope will continue helping. I still have lorazepam at home just in case things will get out of control and will use it over and over again until doctors offer something else. You get to the point when nothing else helps but medication.

 

[3ll]

"We had a rather stuck up nurse visit who told us not to administer it anymore and was almost appalled that she had been given it to begin with."

I assume that a doctor prescribed the Lorazepam and told you how often and when it can be administered so I'd listen to him not a nurse.

If I'm with Mum and she starts to get agitated, I can usually manage to stop it but-I don't have her full time, I no longer work and I don't have a young child. A good nursing home may be able to spot the beginning of agitation or aggression and stop it before it escalates but you have too many other important commitments to provide her with this level of attention. This is not a criticism; I think you're a wonderful young lady to step into this caring role but it's too much....just far too much.

I suspect that your holiday will open a few eyes so don't forget to turn your phone off!!!!

Thank you.

You’re comment didn’t come across as critical and you’re absolutely right, I have too much going on to give her the level of attention she needs.

I will be calling the GP again tomorrow and then having a conversation with the rest of my family.

I’m reading lots of posts on here and the replies to my threads and I’m feeling a whole lot better and relieved in finally being able to admit to myself that I can’t do this anymore.

You’re all amazing people and I’m so sorry that you too are experiencing this.

 

[My Mum's Daughter]

Thank you.

You’re comment didn’t come across as critical and you’re absolutely right, I have too much going on to give her the level of attention she needs.

I will be calling the GP again tomorrow and then having a conversation with the rest of my family.

I’m reading lots of posts on here and the replies to my threads and I’m feeling a whole lot better and relieved in finally being able to admit to myself that I can’t do this anymore.

You’re all amazing people and I’m so sorry that you too are experiencing this.

Like your Dad, I also have a wonderful daughter who at a guess, would be around your age. She's spent the last 5-6 years propping me up in bad times and I can't begin to say how much she's helped me but what I won't and never would allow is for her to become a full or part time carer for my mother. All young people must be allowed their own lives, careers and families and I'm sure that your Granny wouldn't want you to give up your life for her.
Stand firm, you'll probably be faced with a bit of a battle; you're responsible for your son's needs but not granny's.

 

[Loujess]

Thank you.

You’re comment didn’t come across as critical and you’re absolutely right, I have too much going on to give her the level of attention she needs.

I will be calling the GP again tomorrow and then having a conversation with the rest of my family.

I’m reading lots of posts on here and the replies to my threads and I’m feeling a whole lot better and relieved in finally being able to admit to myself that I can’t do this anymore.

You’re all amazing people and I’m so sorry that you too are experiencing this.

you really should be so proud of yourself for having managed this far but you’re right.Getting the help you need is the sensible thing to do. Good luck to you.