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.
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.