Hallucinations and disturbing behaviour

[AlifieBow]

Mum is on steroids and chemo for cancer (along side dementia) and has recently (so 3 months into her treatment) started to be confused all the time with very few occasions when she is lucid. She has been in a care home since May as she is no longer able to weight bear and is doubly incontenant. Talking to invisible people etc. The care home assure me the majority of the time she is calm and chatting but she has been removed from social areas for being rude and upsetting other residents and is awake all night talking to these imaginary people making her sleepy in the day. I have asked her medical team to review her meds (steroids particularly) to see if they are the culprit, asked nurses to check for UTI/infections. BUT I feel so ineffective - I don't live nearby and can only visit monthly. We use to talk daily on the phone and do video calls but these no longer work with/for her. My brother lives 5 mins away and does visit once a week but I struggle to get the feedback I need from him and I am beginning to doubt the home (are they supervising her eat/drink etc) things I simply can not answer. I have asked her social worker to visit and am trying to employ a paid carer to check her once a week. Any advice on how I can deal with this as I feel I am letting mum down massively. Hope this makes sense! Could do with finding someone with similar experience? One thing I am struggling with is an old friend/neighbour who has been lovely and visiting but she saw mum in just a t-shirt and her pad the other day in a bit of a state and I just know mum would be mortified if she knew this lady had seen her like this. Sorry I have rambled on!

 

[jennifer1967]

Mum is on steroids and chemo for cancer (along side dementia) and has recently (so 3 months into her treatment) started to be confused all the time with very few occasions when she is lucid. She has been in a care home since May as she is no longer able to weight bear and is doubly incontenant. Talking to invisible people etc. The care home assure me the majority of the time she is calm and chatting but she has been removed from social areas for being rude and upsetting other residents and is awake all night talking to these imaginary people making her sleepy in the day. I have asked her medical team to review her meds (steroids particularly) to see if they are the culprit, asked nurses to check for UTI/infections. BUT I feel so ineffective - I don't live nearby and can only visit monthly. We use to talk daily on the phone and do video calls but these no longer work with/for her. My brother lives 5 mins away and does visit once a week but I struggle to get the feedback I need from him and I am beginning to doubt the home (are they supervising her eat/drink etc) things I simply can not answer. I have asked her social worker to visit and am trying to employ a paid carer to check her once a week. Any advice on how I can deal with this as I feel I am letting mum down massively. Hope this makes sense! Could do with finding someone with similar experience? One thing I am struggling with is an old friend/neighbour who has been lovely and visiting but she saw mum in just a t-shirt and her pad the other day in a bit of a state and I just know mum would be mortified if she knew this lady had seen her like this. Sorry I have rambled on!

have you asked why your mum was dressed that way? could she have refused clothing?

 

[millalm]

@saraheverett It sounds to me like you are trying to do the best you can for your Mum, asking for med reviews , testing for UTIs etc, it must be especially hard from a distance. Just because you cannot give your Mum the calmness and serenity you wish for her, does not mean you are letting her down, it is dementia that is robbing her of her lucidity and her dignity. We are all caught up in trying to maintain the essence of our loved ones prior to this ruthless disease when in fact we are helpless to do so. Yes , your Mum would have been mortified, but now she has no idea she was indisposed and any friend kind enough to continue to visit will surely understand that your Mum's situation has changed.

You say you are doubting the care home, have there been instances where there have been issues, or is it because you are feeling anxious, and at a distance? Has your brother expressed any concerns after his visits? Can you have him Facetime with your Mum when he visits so you can see her in person?

You asked for other's experience , this is a small peek at mine. In the middle stage of my Mum's dementia 5 years ago I agreed to try all kinds of drugs to try and stop the hallucinating and delusions. They all made her stiff and unresponsive so I decided to try to accept that as long as the delusions and hallucinations were only bothering me to just go along with the rambling, and talking to invisible people and I use a lot of UH HUH and really? and you don't say? She also had trouble getting to sleep as she was engaging with these people and so the DR prescribed a nightime dose of Zopiclone which just allows her to drift off to sleep, as it calms her agitation. I have noticed no side effects in 2 years. There are still some nights when she talks all through the night , then sleeps for 24 hours afterwards. In the advanced stage of dementia she is in now, sometimes I can see that her face is animated and she is conversing with someone but making no sounds, then will startle me by opening her eyes, looking away to the side and asking my Dad ( dead for 9 years) if he'd like another cookie, or if he is warm enough? Sometimes her expression appears to be strained , and the words heated but she does not appear to be in pain or in fear and eventually it passes. Since COVID residents have been confined to their rooms most of the day so there is very little interaction other than with staff when they are providing care and I think my Mum has withdrawn into a place where she is living in her head. We were locked out for 7 months and all of the residents showed signs of decline when we were allowed to return, the residents with dementia most visibly affected.

I am fortunate that I was able to move my Mum to a care home 5 minutes away so I go most nights to feed her dinner and get her ready for bed . It is getting harder to put her nightie on because her arms are so rigid across her chest, I have put snaps on the shoulders so it goes over her head, down under her arms and back up to the shoulder. Then they use a hoist to move her from the wheelchair to the bed. On my way home I often have a little cry , and second guess every decision I have made on this soul sucking journey, feeling somehow I have let my Mum down even though rationally I know it is Dementia not me at all.

I tell you this so you know you are not alone in your feelings , and to reassure that not being able to 'fix' or manage your Mum's situation is not a failing on your part. Sometimes it just is as it is.

Keep asking for help from staff, talk to your brother about what he can do to keep you more informed, and try not to beat yourself up!

Wishing you Strength

 

[AlifieBow]

have you asked why your mum was dressed that way? could she have refused clothing?

I believe she was just in bed but had thrown the cover off asking to to go to the toilet - they say she asks after the event hence the pads.

 

[AlifieBow]

@saraheverett It sounds to me like you are trying to do the best you can for your Mum, asking for med reviews , testing for UTIs etc, it must be especially hard from a distance. Just because you cannot give your Mum the calmness and serenity you wish for her, does not mean you are letting her down, it is dementia that is robbing her of her lucidity and her dignity. We are all caught up in trying to maintain the essence of our loved ones prior to this ruthless disease when in fact we are helpless to do so. Yes , your Mum would have been mortified, but now she has no idea she was indisposed and any friend kind enough to continue to visit will surely understand that your Mum's situation has changed.

You say you are doubting the care home, have there been instances where there have been issues, or is it because you are feeling anxious, and at a distance? Has your brother expressed any concerns after his visits? Can you have him Facetime with your Mum when he visits so you can see her in person?

You asked for other's experience , this is a small peek at mine. In the middle stage of my Mum's dementia 5 years ago I agreed to try all kinds of drugs to try and stop the hallucinating and delusions. They all made her stiff and unresponsive so I decided to try to accept that as long as the delusions and hallucinations were only bothering me to just go along with the rambling, and talking to invisible people and I use a lot of UH HUH and really? and you don't say? She also had trouble getting to sleep as she was engaging with these people and so the DR prescribed a nightime dose of Zopiclone which just allows her to drift off to sleep, as it calms her agitation. I have noticed no side effects in 2 years. There are still some nights when she talks all through the night , then sleeps for 24 hours afterwards. In the advanced stage of dementia she is in now, sometimes I can see that her face is animated and she is conversing with someone but making no sounds, then will startle me by opening her eyes, looking away to the side and asking my Dad ( dead for 9 years) if he'd like another cookie, or if he is warm enough? Sometimes her expression appears to be strained , and the words heated but she does not appear to be in pain or in fear and eventually it passes. Since COVID residents have been confined to their rooms most of the day so there is very little interaction other than with staff when they are providing care and I think my Mum has withdrawn into a place where she is living in her head. We were locked out for 7 months and all of the residents showed signs of decline when we were allowed to return, the residents with dementia most visibly affected.

I am fortunate that I was able to move my Mum to a care home 5 minutes away so I go most nights to feed her dinner and get her ready for bed . It is getting harder to put her nightie on because her arms are so rigid across her chest, I have put snaps on the shoulders so it goes over her head, down under her arms and back up to the shoulder. Then they use a hoist to move her from the wheelchair to the bed. On my way home I often have a little cry , and second guess every decision I have made on this soul sucking journey, feeling somehow I have let my Mum down even though rationally I know it is Dementia not me at all.

I tell you this so you know you are not alone in your feelings , and to reassure that not being able to 'fix' or manage your Mum's situation is not a failing on your part. Sometimes it just is as it is.

Keep asking for help from staff, talk to your brother about what he can do to keep you more informed, and try not to beat yourself up!

Wishing you Strength

Thank you and sorry your mum is on this journey too xx your words have helped me x