My mum is 95 and diagnosed with Alzheimers.
I hired a private carer for her in September when I went away for 5 days but during that time mum had fallen on her bedroom floor and wasn’t found by the carer for 10 hours. When I checked the camera in mum’s room it looks like she had gotten out of bed from the wrong side (not the side she always gets out) and then being in pitch darkness and disorientated she went over.
Other than a mark on her face she was thankfully ok.
Since my return she has now fallen out of bed a couple of times….always from the side that she usually doesn’t get out of bed from. She has some memory that something happened and that she might have fallen before and I think this anxiety is making her over compensate with her sleeping position.
We’ve tried bed sensors and fall detector watches but to no use.
I hired a joiner to block off that side of the bed with a thick and sturdy piece of MDF to ensure she doesn’t fall out of bed again that side. This seemed to work for a few weeks but in the last few days mum fell out of bed from the other side, appears to have gotten back on her feet but then decided to go downstairs (without the use of her stairlift AND in the dark) and then had another fall at the bottom of the stairs which is where I found her when I arrived in the morning to check up on her.
When I checked the camera playback I saw that mum was taking unusual sleeping positions in her bed. It’s a double bed and she’s very petite and this unfortunately allows her to sleep around the bed. It’s something she’s never done before but she’s started sleeping across the bed and on the most recent fall she slept across the bed and then moved her head to the foot of the bed with her feet where the pillows normally are. Obviously she senses something isn’t right and loses her bearings and falls out.
Unfortunately, this time she has broken her clavicle and we’ve had to surrender ourselves to the NHS system. They explained that they ordinarily wouldn’t keep someone in hospital with a fractured clavicle but they would like to assess mum for 2-3 days to try to understand why she may be falling out of bed regularly.
However, the very next morning after her evening admittance they rang me to say she had been assessed and declared medically fit for discharge. I was somewhat alarmed by this as a) that isn’t what they told me would happen and b) I had had no time to try and put extra measures in place for her. The thought of her falling out of bed again with a fractured clavicle was deeply worrying. The hospital suggested that mum could benefit from being assessed in some specialist home for a week or so to determine how she might be able to return home.
I extremely reluctantly agreed that that may be the best option in the short term. My hesitation stemmed from the fact that I knew mum would be extremely disorientated from being away from her home of over 60 years but I felt I really had no other choice.
Day one of mum’s first full day in hospital and on my first afternoon visit she was settled but confused and talking a bit of nonsense. Not typical of her by any means but understandable as she’d already been moved twice by that point and with her also being sight impaired then a constant flurry of figures and rooms along with being away from her home is bound to lead to confusion.
Day one and my evening visit was like night and day. Mum has been moved to a dementia ward and she was, for want of a better word, delirious. Making no sense about the things she spoke about. Wanting to leave. Angry. Irritable. All the things she normally isn’t. Seeing her like this was like a blow to the stomach as we’ve never ever seen her in this state before.
Day two visit and although more settled the delirious talking remained. Very hard for us to observe this. We had to request a chat with the doctor and consultant for the first time as well. They asked if anything had been explained to us and we told them “no”…..nothing!
The consultant said it is now likely that mum will stay in the ward for approx. 5 nights in total before being considered for discharge to the assessment home. They told us they would look into conducting a UTI test and also said the OT would ring us that evening.
Last two days the delirium appears to have gone completely and although mum was still confused the emotion of not being at home and with strangers was making her cry very often (not like mum)
I am still very much working on the premise of mum returning to her house. I believe changing her double bed to a single bed with some protection on the sides would help. A smaller bed would prevent her from having the space to twist around too much in bed. I am also considering hiring a live in carer or night carer for a month or two just to see how mum copes being back at home. It will be expensive but I feel mum deserves that chance.
I’m not sure why I have written all of this as it may not even be relevant to the point of my post but my reason for posting is this….
I am becoming increasingly concerned and nervous about the lack of zero communication from medical staff to myself as to what is happening and what is planned to happen to my mum. It was us who had to seek the doctor out initially otherwise they’d be happy for me to visit daily and not actually tell me much about what the journey plan is for mum’s stay.
I was initially told mum would stay in hospital for 2-3 days for assessment. Now it looks like it will be a minimum of 5 days and no definitive discharge date.
I was given a contact number for a Dementia Specialist Nurse to ring but his mobile voicemail says he’s “no longer accepting referrals” (??) and the landline via switchboard says he’s away until 22nd September (we’re in October now).
I was told the assessment home would be for around a week but the consultant said it is usually closer to two weeks. There doesn’t appear to be any recognition from the medical staff that information which is glibly given to families has to be accurate as that information is shaping how those families react to the care of their loved one and helps to form the decisions they make
We were told the OT would ring us back but they haven’t and as far as I am aware the UTI test hasn’t been performed.
On her first day of admittance mum had a fall whilst in the care of an orderly and banged her head. They told me at the time that luckily she was ok. When I asked the consultant a couple of days later how many times mum had fallen whilst in the ward his response was “to the best of my knowledge only once”. To the best of his knowledge is not a definitive answer and another example of poor communication.
The whole patient journey is a labirynth of dead ends and vague information. How on earth as families supposed to make informed decisions when the information being given to them cannot be relied upon?
Has anyone else been through a similar experience and can you suggest any steps to take? Is there any literature I can read as to what happens at this stage of mum’s stay/treatment?
I appreciate staff are over worked but communication should surely be one of the most important elements of a patient’s care.
I hired a private carer for her in September when I went away for 5 days but during that time mum had fallen on her bedroom floor and wasn’t found by the carer for 10 hours. When I checked the camera in mum’s room it looks like she had gotten out of bed from the wrong side (not the side she always gets out) and then being in pitch darkness and disorientated she went over.
Other than a mark on her face she was thankfully ok.
Since my return she has now fallen out of bed a couple of times….always from the side that she usually doesn’t get out of bed from. She has some memory that something happened and that she might have fallen before and I think this anxiety is making her over compensate with her sleeping position.
We’ve tried bed sensors and fall detector watches but to no use.
I hired a joiner to block off that side of the bed with a thick and sturdy piece of MDF to ensure she doesn’t fall out of bed again that side. This seemed to work for a few weeks but in the last few days mum fell out of bed from the other side, appears to have gotten back on her feet but then decided to go downstairs (without the use of her stairlift AND in the dark) and then had another fall at the bottom of the stairs which is where I found her when I arrived in the morning to check up on her.
When I checked the camera playback I saw that mum was taking unusual sleeping positions in her bed. It’s a double bed and she’s very petite and this unfortunately allows her to sleep around the bed. It’s something she’s never done before but she’s started sleeping across the bed and on the most recent fall she slept across the bed and then moved her head to the foot of the bed with her feet where the pillows normally are. Obviously she senses something isn’t right and loses her bearings and falls out.
Unfortunately, this time she has broken her clavicle and we’ve had to surrender ourselves to the NHS system. They explained that they ordinarily wouldn’t keep someone in hospital with a fractured clavicle but they would like to assess mum for 2-3 days to try to understand why she may be falling out of bed regularly.
However, the very next morning after her evening admittance they rang me to say she had been assessed and declared medically fit for discharge. I was somewhat alarmed by this as a) that isn’t what they told me would happen and b) I had had no time to try and put extra measures in place for her. The thought of her falling out of bed again with a fractured clavicle was deeply worrying. The hospital suggested that mum could benefit from being assessed in some specialist home for a week or so to determine how she might be able to return home.
I extremely reluctantly agreed that that may be the best option in the short term. My hesitation stemmed from the fact that I knew mum would be extremely disorientated from being away from her home of over 60 years but I felt I really had no other choice.
Day one of mum’s first full day in hospital and on my first afternoon visit she was settled but confused and talking a bit of nonsense. Not typical of her by any means but understandable as she’d already been moved twice by that point and with her also being sight impaired then a constant flurry of figures and rooms along with being away from her home is bound to lead to confusion.
Day one and my evening visit was like night and day. Mum has been moved to a dementia ward and she was, for want of a better word, delirious. Making no sense about the things she spoke about. Wanting to leave. Angry. Irritable. All the things she normally isn’t. Seeing her like this was like a blow to the stomach as we’ve never ever seen her in this state before.
Day two visit and although more settled the delirious talking remained. Very hard for us to observe this. We had to request a chat with the doctor and consultant for the first time as well. They asked if anything had been explained to us and we told them “no”…..nothing!
The consultant said it is now likely that mum will stay in the ward for approx. 5 nights in total before being considered for discharge to the assessment home. They told us they would look into conducting a UTI test and also said the OT would ring us that evening.
Last two days the delirium appears to have gone completely and although mum was still confused the emotion of not being at home and with strangers was making her cry very often (not like mum)
I am still very much working on the premise of mum returning to her house. I believe changing her double bed to a single bed with some protection on the sides would help. A smaller bed would prevent her from having the space to twist around too much in bed. I am also considering hiring a live in carer or night carer for a month or two just to see how mum copes being back at home. It will be expensive but I feel mum deserves that chance.
I’m not sure why I have written all of this as it may not even be relevant to the point of my post but my reason for posting is this….
I am becoming increasingly concerned and nervous about the lack of zero communication from medical staff to myself as to what is happening and what is planned to happen to my mum. It was us who had to seek the doctor out initially otherwise they’d be happy for me to visit daily and not actually tell me much about what the journey plan is for mum’s stay.
I was initially told mum would stay in hospital for 2-3 days for assessment. Now it looks like it will be a minimum of 5 days and no definitive discharge date.
I was given a contact number for a Dementia Specialist Nurse to ring but his mobile voicemail says he’s “no longer accepting referrals” (??) and the landline via switchboard says he’s away until 22nd September (we’re in October now).
I was told the assessment home would be for around a week but the consultant said it is usually closer to two weeks. There doesn’t appear to be any recognition from the medical staff that information which is glibly given to families has to be accurate as that information is shaping how those families react to the care of their loved one and helps to form the decisions they make
We were told the OT would ring us back but they haven’t and as far as I am aware the UTI test hasn’t been performed.
On her first day of admittance mum had a fall whilst in the care of an orderly and banged her head. They told me at the time that luckily she was ok. When I asked the consultant a couple of days later how many times mum had fallen whilst in the ward his response was “to the best of my knowledge only once”. To the best of his knowledge is not a definitive answer and another example of poor communication.
The whole patient journey is a labirynth of dead ends and vague information. How on earth as families supposed to make informed decisions when the information being given to them cannot be relied upon?
Has anyone else been through a similar experience and can you suggest any steps to take? Is there any literature I can read as to what happens at this stage of mum’s stay/treatment?
I appreciate staff are over worked but communication should surely be one of the most important elements of a patient’s care.
