Lorazepam; a long term solution?

[Angel03]

Hi, sorry to bother people again but for the past few weeks I've noticed an unsettling pattern of behavior with my Nan who has vascular dementia. A few days out of the week she will believe she has some imagine ailment and focus on it constantly all day and into the early hours of the morning. Then whatever the complaint is disappears rarely to be mentioned again for a day or two then she starts up again with something new. Each time she becomes more and more agitated and emotional. It's like she's sun downing the entire 24 hours. Since this goes on all day and night both of us aren't getting a lot of sleep. I phoned her GP and explained the situation and he prescribed her Lorazepam.

I gave it to her for the first time last night and she slept right through. I wish I could say the same as I think my body was still used to being woken up every few minutes, I was also checking on her periodically to see she was sleeping and breathing ok. The morning after she was awake but 'distant' like she was still half asleep even when I was washing her which is usually when her cognitive abilities are at her best. I imagine this was still the effects of the Lorazepam and while it was slightly unsettling to see her this way it did mean I could get housework done without constant interruptions until the afternoon when she was more herself but also started being really agitated again.

I've read all I can on Lorazepam and know it can be addictive and regular doses shouldn't be taken for more than four weeks. I'd like to keep it for when she really needs it but I fear she's going to need it most days. I'm not sure this is going to be a long term solution. I don't really see a solution. Does anyone have any advice they can offer. It would be much appreciated.

 

[Sonya1]

I don't have any 'medical' advice as such and can only speak from our own experience, but my Dad was prescribed Lorazepam at .5mg daily by the memory clinic which later was upped to add in a 2nd .5mg dose if needed. When he went into his nursing home, this continued for a few months but as he has progressed he has actually become less vivibly agitated so now it is given as and when rather than routinely.

It seems that many of the residents are taking it as and when required, long term and luckily the team at Dad's nursing home are very risk aware and cautious with it.

One of the greatest risks is falls and the effect on cognition so yes, it is right to be cautious - but quite common for it to be used as needed for the longer term

 

[phill]

Hi @Angel03 - in order to allay your concerns about this, why don’t you just write a letter to her GP explaining what you’re worried about, and ask him/her how frequently he/she will be reviewing Nan’s medication, and when the next review will be?

 

[Angel03]

Thanks for the replies although sadly I feel this may all be for nothing.

The medication made her slightly less anxious during the day. The 'distance' is gone and it has helped with one thing; usually whenever I change her pad she flinches every time I wipe her bottom, heck even before I touch her she yelps in pain at the mere thought I was going to do it but these past few days she's not done that. I can only point to the medication for making her less anxious about that.

Sadly that's the only thing that has improved. After two nights were she slept through she's gone back to calling constantly in the night. Last night it wasn't so bad as it was only a few times but so far tonight I've lost count of how many times she's called with the same concern of "have I had my tablets?", "why haven't given me my tablets?", "Did you give me my painkiller? I can't sleep without it". Both nights it's started two hours after she has had the Lorazepam when the drug is supposed to reach it's 'peak' effectiveness. I watched her for a while and seen her yawning multiple times but every time it seems like she's starting to drift off she rallies herself to wake. Even prior to the dementia she had a speaking clock because of her poor eye sight. She loves that thing and it never leaves her side and for a while now there are stretches of the night were she presses it non stop, I suspect the voice comforts her somewhat. It's going now even as I type this. I'd take it away from her but I fear that would cause her even more anxiety. It feels pointless going to bed myself as it will be hard to sleep with the clock constantly going and I know it wont be long before she presses the call button or shouts in panic of whether she's had her tablets.

I'm going to call her GP again in the morning but I don't know what he can advise now. I was wary of medicating this problem to begin with as I felt guilty, like I was giving her something just to make her quiet but felt it was the only option left. From what I've read Lorazepam is pretty strong stuff and giving her a stronger dose at her age and fragility may be dangerous. I'd settle for something to make her sleep but it still leaves her anxiety during the day.

I'm at my wits end with it. I know she would not last long in a nursing home and would be miserable there and make this anxiety much worse but I'm not sure I can give her the help she needs. I'm sorry, I'm just venting at this point. A few months ago you might've mistaken my nan for someone with the kind of memory loss and lapse in concentration that comes with old age but these past few weeks have really been some decline that's been hard to cope with.

 

[canary]

I'm so sorry @Angel03

The fractured sleep pattern that comes with dementia once they lose awareness of time can be very hard to treat, because the problem is not insomnia - the problem is disruption of the normal body clock mechanism. Medication will quite often just make them woozy and unsteady on their feet without making them sleep. My mum was up all night and, unfortunately, she continued doing this in her care home right up to the end. Lack of sleep is very often the carers line in the sand

 

[Jessbow]

Would a radio on quietly help overnight?

 

[lollyc]

I know many will not approve, but my Mum had Mirtazipine, Quetiapine and Lorazepam as things progressed. As I believe much of her behaviour was anxiety driven, these helped a lot, and I didn't find a hangover effect in the morning. It is all very well to say you don't want to resort to medication, but I would question the kindness of allowing anyone to be distressed and anxious.

 

[DawnR]

I know many will not approve, but my Mum had Mirtazipine, Quetiapine and Lorazepam as things progressed. As I believe much of her behaviour was anxiety driven, these helped a lot, and I didn't find a hangover effect in the morning. It is all very well to say you don't want to resort to medication, but I would question the kindness of allowing anyone to be distressed and anxious.

My husband was prescribed Lorazepam but they didn’t really help his anxiety at all, so he was given Quetiapine and Mirtazipine. I was unsure about Quetiapine as it’s an anti psychotic medication but the consultant advised we try it. He said if your husband had a headache he would take a paracetamol, and his anxiety was crippling.

He was agitated and crying all day, nothing could settle him down. He’s so much happier now, he’s enjoying his day centre again and his appetite has improved although he mostly eats puréed food. He’s also sleeping much better.

I’m happy I agreed to him having the medication, it was what he needed. I was still worried what people would think though and still am a little bit.

 

[Angel03]

Sadly it looks like a fifth night of little-to-no sleep. We called her GP surgery but for two days we couldn't get a hold of him. When he did call us back he refused to prescribe her anything else simply saying "she is on the right medication". How can it possibly be the right medication when it has no effect at all?

Last night was the worst night since this started. At first I thought we may get away with it but 2:00 am it started and did not let up until 6:00. Constant shouting with the same request; she wanted pepsi. When I told her we didn't have any and had to settle for water instead she accused me of being cruel and lying even started crying. When she wasn't shouting for me I could hear her whimpering in the silence. I usually leave a glass water on the trolley by her bed so she could take a drink herself if she was thirsty but took it away as I could hear her coughing and spluttering with it and was worried she would aspirate also she was starting to spill it frequently leaving her in wet night wear. She noticed it was gone and thought I had taken it away to punish her. I don't know were the idea she had pepsi came from. I'm stocked up on pepsi max for tonight but this afternoon she has started fixating on something new.

I was so in despair I did the one thing I thought I would never do; phone social services and told them maybe it was time she was put into a nursing home. The lady I spoke to could tell how much distress I'm in and said she could arrange quickly a 12 day respite and see how it goes from there. As much as I hate it I thought maybe this was for the best and decided to talk to Nan about it. She was adamant that she did not want to go "I'm fine and I'm staying right here". Sadly she didn't know how right she was.

Earlier today I got a call from the social worker and it's one I've dealt with before. It's someone I almost put in a complaint about because of how they spoke to me and her general attitude but at the time I let it go. In December of last year she spoke to Nan in hospital and convinced her she needed carers. I was assured that given her lack of savings she would not pay full for carers but when the bill came in it was full price. This was bothersome as I felt we were going to get into debt when I could do everything the carers were doing (washing, changing her clothes and pad). After two months of constant phone calls to cancel them she told me "not being able to afford it is not a reason to cancel care" when I told her I found the carers more of a hindrance she said "we're not here to do deal with your needs it's your grandmother that we deal with". Eventually after impressing on her nan didn't want carers either she came out to speak to her to make sure I wasn't coercing her into getting rid of the carers. After interviewing her alone she felt satisfied that she was more comfortable with me looking after her but the whole thing was an ordeal.

Now I have to deal with the same woman again and already the same attitude. "She's not going into respite until I see her and say so and I don't make house visits on Wednesdays". When I say what she's like she simply said "just sleep when she sleeps" when I told her she barely sleeps and what can I do about her shouting out in the night she sarcastically said "get ear plugs". I almost lost it but kept my cool but how is ignoring her when she's in distress giving her good quality of care? She's coming to see us tomorrow but I'm not confident she'll agree to put her in respite since she doesn't want to go.

It's not my Nan's fault but what everyone is allowing her to put me through is mental torture and it certainly isn't doing her any good, her mood today is very low. I just don't see a way out.

 

[DawnR]

Sadly it looks like a fifth night of little-to-no sleep. We called her GP surgery but for two days we couldn't get a hold of him. When he did call us back he refused to prescribe her anything else simply saying "she is on the right medication". How can it possibly be the right medication when it has no effect at all?

Last night was the worst night since this started. At first I thought we may get away with it but 2:00 am it started and did not let up until 6:00. Constant shouting with the same request; she wanted pepsi. When I told her we didn't have any and had to settle for water instead she accused me of being cruel and lying even started crying. When she wasn't shouting for me I could hear her whimpering in the silence. I usually leave a glass water on the trolley by her bed so she could take a drink herself if she was thirsty but took it away as I could hear her coughing and spluttering with it and was worried she would aspirate also she was starting to spill it frequently leaving her in wet night wear. She noticed it was gone and thought I had taken it away to punish her. I don't know were the idea she had pepsi came from. I'm stocked up on pepsi max for tonight but this afternoon she has started fixating on something new.

I was so in despair I did the one thing I thought I would never do; phone social services and told them maybe it was time she was put into a nursing home. The lady I spoke to could tell how much distress I'm in and said she could arrange quickly a 12 day respite and see how it goes from there. As much as I hate it I thought maybe this was for the best and decided to talk to Nan about it. She was adamant that she did not want to go "I'm fine and I'm staying right here". Sadly she didn't know how right she was.

Earlier today I got a call from the social worker and it's one I've dealt with before. It's someone I almost put in a complaint about because of how they spoke to me and her general attitude but at the time I let it go. In December of last year she spoke to Nan in hospital and convinced her she needed carers. I was assured that given her lack of savings she would not pay full for carers but when the bill came in it was full price. This was bothersome as I felt we were going to get into debt when I could do everything the carers were doing (washing, changing her clothes and pad). After two months of constant phone calls to cancel them she told me "not being able to afford it is not a reason to cancel care" when I told her I found the carers more of a hindrance she said "we're not here to do deal with your needs it's your grandmother that we deal with". Eventually after impressing on her nan didn't want carers either she came out to speak to her to make sure I wasn't coercing her into getting rid of the carers. After interviewing her alone she felt satisfied that she was more comfortable with me looking after her but the whole thing was an ordeal.

Now I have to deal with the same woman again and already the same attitude. "She's not going into respite until I see her and say so and I don't make house visits on Wednesdays". When I say what she's like she simply said "just sleep when she sleeps" when I told her she barely sleeps and what can I do about her shouting out in the night she sarcastically said "get ear plugs". I almost lost it but kept my cool but how is ignoring her when she's in distress giving her good quality of care? She's coming to see us tomorrow but I'm not confident she'll agree to put her in respite since she doesn't want to go.

It's not my Nan's fault but what everyone is allowing her to put me through is mental torture and it certainly isn't doing her any good, her mood today is very low. I just don't see a way out.

I’m sorry but not surprised social services haven’t been much help.
You shouldn’t have to feel like you have nowhere to turn. Sleep deprivation is like torture.
Have you tried 111 ask them to pass your details to the crisis team. They are available 24/7 and they are to there for both of you. Things only started to happen for us after I spoke to the crisis team.
Sending you a hug 🤗 sorry I can’t offer more x

 

[sdmhred]

Hello @Angel03

You must be absolutely exhausted 😢😢 My suggestion is that you tell SW that due to your lack of sleep you have booked yourself into a hotel or staying with a friend from xxx date so that you can rest …..and that your Nan will therefore be alone. She will therefroe have no choice but to implement the respite…..

 

[Angel03]

I'd like to thank everyone for the supportive words and advice. At very least it feels good to vent.

It's been a roller coaster 24 hours. Save for a few hours here and there Nan has been awake for five days. I was certain she had to crash at some point but towards her bed time last night she seemed to calm down slowly. She had an almost entirely uninterrupted nights sleep. For most of Thursday she's been perfectly fine calm, good natured, lucid. It almost made me re-think my decision and cancel the social worker but I realised that this might be one of the few good days and I can't count on them.

When the social worker arrived arrived I went through the whole situation with her. Somewhat bothersome was that she seem to suggest if my Nan didn't agree to go into respite it wouldn't happen as she has capacity. I queried how could she possibly be viewed as having capacity when most of the time she doesn't remember anything - heck some of the time she doesn't know were she is or who she's talking to but I got "capacity comes and goes".

I was dreading their conversation if my Nan refused to go into respite. To my surprise Nan was persuaded to go into respite. She said "well I don't want to go but if you think it will make things better". I must admit that as brusque as she is with me she is very good at communicating with my Nan. This is twice now she has easily convinced my Nan to do something she would normally never agree to.

It started to feel as if we were finally making progress but then she said it may take a few days to find her an appropriate place and that the #1 thing is that she is safe and I would have to make do as best I could. I understand her first priority is my Nan but she does seem to casually dismiss my needs as her carer. She says the priority is her safety but if I collapse from exhaustion or take ill who is going to look after her then? She said she'd call back today but nothing yet. I'll try and call myself once I'm done typing this but I suspect nothing will be sorted until Tuesday given the weekend plus the bank holiday. Worse while thankfully not as bad as she had been Nan is confused again today. Nothing I normally couldn't handle but after the lack of sleep this week it's very much a slog. I'm dreading tonight if she sundowns or what she will be like over the weekend if she reverts to what she has been like most of this week.

I’m sorry but not surprised social services haven’t been much help.
You shouldn’t have to feel like you have nowhere to turn. Sleep deprivation is like torture.
Have you tried 111 ask them to pass your details to the crisis team. They are available 24/7 and they are to there for both of you. Things only started to happen for us after I spoke to the crisis team.
Sending you a hug 🤗 sorry I can’t offer more x

It was the Crisis Team that I initially called. The lady I spoke to seemed to agree that this was an urgent problem and said they were going to find a place for her quickly as they could. She even called back to take some details of her requirements. Then later on in the day I got a call from the social worker saying the case had been transferred to her and now it doesn't seem to be being treated as urgent.

Hello @Angel03

You must be absolutely exhausted 😢😢 My suggestion is that you tell SW that due to your lack of sleep you have booked yourself into a hotel or staying with a friend from xxx date so that you can rest …..and that your Nan will therefore be alone. She will therefroe have no choice but to implement the respite…..

For the most part I'd prefer not to do that as I'd hate for it to look as if I'm abandoning my grandmother but if this stretched on much longer it may come to the point were refusing care may be the only way to get this sorted.

 

[TMH]

I know many will not approve, but my Mum had Mirtazipine, Quetiapine and Lorazepam as things progressed. As I believe much of her behaviour was anxiety driven, these helped a lot, and I didn't find a hangover effect in the morning. It is all very well to say you don't want to resort to medication, but I would question the kindness of allowing anyone to be distressed and anxious.

I agree with you. Dad has loraz prescribed at 0.5mg as and when required. The effects are variable and I'm lucky I hardly have to use it. I don't use it because I'm scared of it and everything you read about it screams don't. Yet I absolutely do agree with what you say. It's cruel for them to be distressed and anxious if you can stop it x

 

[Angel03]

Sadly I'm not having as much luck with this. When my Nan's GP initially prescribed it to her he told me to use caution so I just gave her 1mg tablet before bed as that's when she usually seems the most anxious and frankly when I need her most not to be anxious so I can get some sleep.

On the advice of a doctor when I phoned 111 and she advised me it was time to give her the second 1mg tablet in a six hour interval. I can tell it's having an effect as she's drowsy and when she calls out it no longer in a panicked state but she's still calling out an a lot and I can't seem to distract or reassure her as she forgets moments later. A sad irony is since she's no longer quite as panicked she's calling my name as a soft whimper so when I'm in bed it's harder to hear.

I'm hoping now that the bank holiday is over social services can finally sort out respite for her but I suspect that they've waited for the bank holiday to be over to simply start looking and I'm in for a few more days of this.