My relative has been in his care home for 2 years now and his behaviour is getting worse. He says he feels like he’s in prison, the care home do a lot of activities that he is involved in and even take him out some days when we aren’t there! He’s requiring lorazepam almost every evening as the carers state that’s when becomes “heightened and agitated” He refuses to get out of the car some days when we drop him back off at his care home. Any advice on this? Have people had similar situations. He settled in nicely at first I’m upset that it feels like we’re back to square one
2 years on no progress at care home
- Thread starter Pet26
- Start date
Hi @Pet26 and welcome to Dementia Support Forum our friendly and helpful community of members who have experience of many aspects of dementia. I am sorry to hear that your relative remains unsettled in his care home. I do wonder whether what you have described about agitation in the evening is what is known as "sundowning". It can be difficult to deal with but nothing new to a home that has experience in dementia.
My wife went through an unsettled phase and was referred to the challenging behaviour team. She was prescribed Lorazepam but on an only as needed rather than routine basis. As she settled so her aggressive behaviour subsided and the medication was no longer required.
A further thought is that your relative may not have transferred dependency from you to the care home staff. If he doesn't want to go back to the home after being out with you perhaps reducing trips out (for a while) might help. My experience is that, as she became more settled and accepted that she lived in the home, my wife lost interest in going out.
I hope that some of this may help.
My wife went through an unsettled phase and was referred to the challenging behaviour team. She was prescribed Lorazepam but on an only as needed rather than routine basis. As she settled so her aggressive behaviour subsided and the medication was no longer required.
A further thought is that your relative may not have transferred dependency from you to the care home staff. If he doesn't want to go back to the home after being out with you perhaps reducing trips out (for a while) might help. My experience is that, as she became more settled and accepted that she lived in the home, my wife lost interest in going out.
I hope that some of this may help.
Unfortunately dementia is progressive, so even with medication, I’d expect you to see a decline over two years. A review given his current symptoms is probably in order. There are meds which can help with sundowning, if that’s what it is. Or maybe the timing or dosage of an existing med needs a tweak.
If returning from trips out is a particular trigger for him becoming agitated, it may be time to cut back - or even stop them. There’s little point to them if any enjoyment he takes from them, is immediately reversed as soon as he gets back to base. It could be that he’s reached the stage where he’s becoming over-stimulated and his brain is struggling to make sense of his surroundings. Maybe staying in familiar and safe surroundings is more of a priority.
No need to feel guilty - you’re just responding to his changing needs as this nasty condition moves inevitably forward.
If returning from trips out is a particular trigger for him becoming agitated, it may be time to cut back - or even stop them. There’s little point to them if any enjoyment he takes from them, is immediately reversed as soon as he gets back to base. It could be that he’s reached the stage where he’s becoming over-stimulated and his brain is struggling to make sense of his surroundings. Maybe staying in familiar and safe surroundings is more of a priority.
No need to feel guilty - you’re just responding to his changing needs as this nasty condition moves inevitably forward.
I'm wondering how long your mum is out when you take her out. My mum lived in her care home just shy of three years and over that time she could only cope with increasingly short periods of time out. I also had to make sure I brought her back before 3pm otherwise she would start sundowning.
Eventually, as the dementia progressed, she could not cope with going out at all - she found it too distressing being away from the familiar
Eventually, as the dementia progressed, she could not cope with going out at all - she found it too distressing being away from the familiar
Really helpful reply thank you. He is due a mental health review this week not too sure what that entails but will ensure I’m part of it. What kind of medication can help with sundowning that you’re aware of?
I’m afraid my Mum takes a cocktail of meds which come pre-packed in daily doses without their boxes, so I don’t know which tablets address which symptoms. I’m sure others here will be able to.
This sounds like my mum. She was settled at first and really happy. A year later she gets really agitated and aggressive sundowning. she will have a tantrum if she doesn’t get served her dinner first, refuses to let the nurses give her insulin, and can be really rude to residents and staff alike. They give her diazepam, if she will take it. She also gets upset when I take her back. She says she hates it there.
on the flip side she joins in with the activities and can be hysterically funny with everyone.
I have no advice unfortunately….. but you are not alone!
on the flip side she joins in with the activities and can be hysterically funny with everyone.
I have no advice unfortunately….. but you are not alone!
I am sorry things are rough at the moment. I was taken with the title of your post about progress? Were you led to believe that there would be improvement in mum with 24 hour care ? If so this must be a hard realisation.
My head knows mum’s dementia is a progressive illness but each deteriorated is met with shock surprise and heart ache. My heart won’t keep up with my head. So I empathise.
I think I would leave the trips for a while and then observe /assess If mum is more settled then you have your answer. We keep thinking there must be something we can do to add value to their lives. The reality is that often it’s acceptance and adjustment within us as the disease progresses. Your mum is fortunate to have a loving family x
My head knows mum’s dementia is a progressive illness but each deteriorated is met with shock surprise and heart ache. My heart won’t keep up with my head. So I empathise.
I think I would leave the trips for a while and then observe /assess If mum is more settled then you have your answer. We keep thinking there must be something we can do to add value to their lives. The reality is that often it’s acceptance and adjustment within us as the disease progresses. Your mum is fortunate to have a loving family x
