First time posting so please forgive me if posted in the wrong section. Mum went into respite 2 weeks ago and has a week of respite left. All this has been self funded so far. Before going into respite we had a feeling that mum may need 24/7 care as my father has been her main carer and TBH he has done more than we thought he could. Mums mental health nurse has recommended 24/7 care in a EMI home and the social worker has also completed her assessment with the same outcome. Currently the respite home is not EMI registered so we are on the hunt for a suitable home. They have said they cannot extend her stay beyond the end of her respite stay. Social worker is in contact with a few NH but one recommendation is in special measures under the CQC reports which ain’t keen on for obvious reasons. My concern is what happens at the end of my mums respite car. My father has said he can’t cope 24/7 care anymore and it has been recommended that that she needs 24/7 care. Social worker mentioned a short stay somewhere before a permanent NH can be found but would rather have her settled in one place asap. At some point in the not too distant future we will need the LA to fund but we are not adverse to top up fees. My main fear is that my mum will have to come home after the respite is over and then tip my father over the edge. Safeguarding for my mum is paramount as is the mental health for my father. Anybody give me any advice of what options are open to us? TIA.
End of respite care and now 24/7 care recommended.
- Thread starter Chris 72
- Start date
Hi @Chris72 and welcome to Dementia Talking Point.
First of all I wonder if the care home would extend the stay if they know you are actively looking for a more suitable place as I agree you don't want to move your mum more than you have to. If you can, I'd go and look at the homes suggested. My husband and I have been looking for my mother and mother in law recently and we managed to have useful meetings with people from all the care homes even though things aren't as open as they were pre-covid. I also wouldn't dismiss the requires improvement home out of hand. I think I would rather my mother was in a home working to improve things than one resting on it's laurels. It also depends where they were marked down. If it was to do with paperwork I wouldn't be as concerned as I would be if it was due to poor care.
This website might be useful https://www.carehome.co.uk/ to help you narrow down your search. Finally I'd be wary of top-up fees as the fees will only go up and you might end up paying out a lot more than you are comfortable with.
If it is suggested that your mum comes home, your dad will need to be firm and refuse to have her back. That sounds horrible, but it is important she gets the care she needs and that his needs are met too.
First of all I wonder if the care home would extend the stay if they know you are actively looking for a more suitable place as I agree you don't want to move your mum more than you have to. If you can, I'd go and look at the homes suggested. My husband and I have been looking for my mother and mother in law recently and we managed to have useful meetings with people from all the care homes even though things aren't as open as they were pre-covid. I also wouldn't dismiss the requires improvement home out of hand. I think I would rather my mother was in a home working to improve things than one resting on it's laurels. It also depends where they were marked down. If it was to do with paperwork I wouldn't be as concerned as I would be if it was due to poor care.
This website might be useful https://www.carehome.co.uk/ to help you narrow down your search. Finally I'd be wary of top-up fees as the fees will only go up and you might end up paying out a lot more than you are comfortable with.
If it is suggested that your mum comes home, your dad will need to be firm and refuse to have her back. That sounds horrible, but it is important she gets the care she needs and that his needs are met too.
Thanks for your reply. Unfortunately the current respite home won't extend her stay. This has been confirmed today. One of the homes has been deemed as inadequate down to numerous things from PPE issues, safe distribution of medication. We are awaiting a couple of answers from local NH after the social worker sent them an assessment. My mother's mental health nurse did advise that she couldn't return home and to strongly advise this to the social worker.
Hello @Chris 72
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Mum is due out of respite next Thursday and I'm beginning to panic now what will happen on Thursday. Social worker has been waiting to hear back from two homes after sending them an assessment. What happens on Wednesday is we are still no nearer to finding mum a permanent stay. All involved have recommended 24/7 care and the current home have days they cannot keep her beyond Thursday.
Hi @Chris 72 did the helpline as posted by @Grannie G have any advice for you? I found them very helpful when I found myself in a similar situation with my dad.
Basically what I roundabout knew. Social worker asked me if I had a plan B. Ruthlessly I said they isn't a plan B and they need to find Mum somewhere before Thursday when her respite runs out. They did ask if she could go back home for a few week until they find her somewhere but I've been told to refuse this point blank. Hard to do this but best for mum from a safeguarding point of view. Looks like she'll have to go somewhere without EMI care until she really needs it which at some point will happen.
Yes, stick to your guns about your mum not coming home.
Any hesitation will be seen as capitulation
Any hesitation will be seen as capitulation
Morning. Sleepless night for me. Mum is due out of respite Thursday and still nothing concrete about a move to another home. Social worker telling me not to stress as they are doing their best to try and find somewhere. Time is ticking and I'm dreading Thursday is going to come around and no nearer to getting mum into a home. Worse case is mum coming home but all the professionals have said she needs 24/7 care. We cannot have mum back at home for her own safety. Feels like it's a game is who blinks first with the LA and myself. I keep reassuring my dad that all will be fine but he's stressing more than me. I've got today off work and feel that I have to try and do something today to help move things along. I need help.
I know how hard this is @Chris 72 . I’ve been in a similar situation. Don’t agree to have your mum back home when you know you can’t cope. SS went to the eleventh hour with me and I remember the stress. Stay strong.
Might it be worth calling any of the other carehomes again to see if they have any unexpected vacancies?
Might it be worth calling any of the other carehomes again to see if they have any unexpected vacancies?
Hello - hope you don't mind me jumping in on your post but I am interested that your Mums Mental Health Nurse
has recommended 24 hour care and EMI plus a Social Worker.
I am looking at the moment and been visiting Care Homes for both parents ( Dad with Alzheimer's and Mum with Mixed Dementia plus Mental Health issues ) - will be self funding. It hasn't been an easy decision to think about but I have to consider their safety. Mum is struggling a lot with confusion about where she is living ( their home since 1974) short term memory and anxiety issues .
I haven't involved my Mums Mental Health Nurse or thought about Social Workers - is it helpful to have their involvement? Do they do what I am doing ie looking at potential homes ?
We don't have a Social Worker .
I am getting mixed messages from the Professionals .......GP says Care Home probably Nursing Home , Frailty Nurse says stay at home and eventually move from 4 Carers visits a day to live in Carer ( finances would only allow for 10 months before house sale ) Psychiatrist says not yet for a Care Home and Mental Health Nurse goes along with him. I have a telephone appointment with him tomorrow.
Thanks for any advise.
Hoping that you can get a suitable Care Home for your Mum very soon.
has recommended 24 hour care and EMI plus a Social Worker.
I am looking at the moment and been visiting Care Homes for both parents ( Dad with Alzheimer's and Mum with Mixed Dementia plus Mental Health issues ) - will be self funding. It hasn't been an easy decision to think about but I have to consider their safety. Mum is struggling a lot with confusion about where she is living ( their home since 1974) short term memory and anxiety issues .
I haven't involved my Mums Mental Health Nurse or thought about Social Workers - is it helpful to have their involvement? Do they do what I am doing ie looking at potential homes ?
We don't have a Social Worker .
I am getting mixed messages from the Professionals .......GP says Care Home probably Nursing Home , Frailty Nurse says stay at home and eventually move from 4 Carers visits a day to live in Carer ( finances would only allow for 10 months before house sale ) Psychiatrist says not yet for a Care Home and Mental Health Nurse goes along with him. I have a telephone appointment with him tomorrow.
Thanks for any advise.
Hoping that you can get a suitable Care Home for your Mum very soon.
Hi @Tilly13.
We are also self funding at the moment but three weeks of respite care is putting my mother's finances on the brink of asking for help from the LA. My dad has an admiral nurse who looks after his needs and the MHN was assigned to mum for her medication. We recently changed her GP to another practice as they are closing and not even been in touch since she was diagnosed. Already her new GP has been in touch for a review of her medication. I think the LA have to complete an assessment whether you are self funding or not. They have completed an assessment and in agreement with the MHN and Admiral nurse as well as her respite nursing home. Trouble is mum wanders and is only 72 and is physically fit. She isn't one to sit down for hours on end watching TV. We don't think she is ready for EMI care yet but wanted a place with that facility so we don't have to move her again..
We are also self funding at the moment but three weeks of respite care is putting my mother's finances on the brink of asking for help from the LA. My dad has an admiral nurse who looks after his needs and the MHN was assigned to mum for her medication. We recently changed her GP to another practice as they are closing and not even been in touch since she was diagnosed. Already her new GP has been in touch for a review of her medication. I think the LA have to complete an assessment whether you are self funding or not. They have completed an assessment and in agreement with the MHN and Admiral nurse as well as her respite nursing home. Trouble is mum wanders and is only 72 and is physically fit. She isn't one to sit down for hours on end watching TV. We don't think she is ready for EMI care yet but wanted a place with that facility so we don't have to move her again..
Thanks for your reply . It is so very hard with the emotional side of things and then we have to look after the finances too!
Sounds like my Mum - very physically active and verbally capable. Hates sitting down and not doing something.
Homes we've seen have said Mums not suitable for the Residential floor as she has on occasions gone for a walkabout and they would be concerned for her safety but she is ' too knowing ' for the Dementia floor !
I'm also not happy to think that my parents would need to move in the future.
Sounds like my Mum - very physically active and verbally capable. Hates sitting down and not doing something.
Homes we've seen have said Mums not suitable for the Residential floor as she has on occasions gone for a walkabout and they would be concerned for her safety but she is ' too knowing ' for the Dementia floor !
I'm also not happy to think that my parents would need to move in the future.
Hi @Chris 72 and @Tilly13
My problem too. Mum has mixed dementia. She is 86 and living alone. Generally OK during the day, leaving aside pretty much zero short term memory and with gradually reducing self-care, but from 7 pm every evening, no longer recognises her home as her own, accuses me of moving her against her will to this house "in the middle of nowhere", believes other people come in at night, and is lonely and frightened. Having looked at local EMI homes, she is nowhere near ready to move to these, as so many residents are barely mobile and generally don't speak much. But could a residential home cope with her evening/nighttime confusion? I really don't want Mum to have to move twice. Just hoping to find a place that could manage her needs in residential initially, but that have anEMI unit perhaps to transition to.
My problem too. Mum has mixed dementia. She is 86 and living alone. Generally OK during the day, leaving aside pretty much zero short term memory and with gradually reducing self-care, but from 7 pm every evening, no longer recognises her home as her own, accuses me of moving her against her will to this house "in the middle of nowhere", believes other people come in at night, and is lonely and frightened. Having looked at local EMI homes, she is nowhere near ready to move to these, as so many residents are barely mobile and generally don't speak much. But could a residential home cope with her evening/nighttime confusion? I really don't want Mum to have to move twice. Just hoping to find a place that could manage her needs in residential initially, but that have anEMI unit perhaps to transition to.
My husband was diagnosed at 62 and entered am EMI nursing home at 69. It was a small unit of 26 beds spread over three floors. Each floor independent of the other two. There were nine men on his floor, all able to walk and hold a conversation of sorts. All 26 residents were mobile. it was attached to the main 109 bedded EMI nursing home where once he was bedridden he moved to.
There were lots of activities going on, some he joined in with for short periods before he was up and off on his travels. He also liked to help with the washing up and putting the biscuit tin away after he had helped himself. He slept very little so he was also up and about during the night. The staff were great and managed the men well. He did have 1:1 care for the first three years he was there because of the long hours he was awake and pacing around.
We were lucky to have such a good nursing home so close to our home.
There were lots of activities going on, some he joined in with for short periods before he was up and off on his travels. He also liked to help with the washing up and putting the biscuit tin away after he had helped himself. He slept very little so he was also up and about during the night. The staff were great and managed the men well. He did have 1:1 care for the first three years he was there because of the long hours he was awake and pacing around.
We were lucky to have such a good nursing home so close to our home.
My mum was in an EMI/dedicated dementia home with people at all stages of dementia. Yes, there were those who were not mobile and/or couldnt speak, but there were quite a few who were mobile and could hold a reasonable conversation and mum struck up a friendship with some of them. One of them in particular moved in just after mum and the two of them became firm friends. They both were convinced that they had been childhood friends, went to school together, worked together, went on holiday together etc etc. It was very sweet.
The home organised activities and several who were still able joined in. They also had things like memory boxes and fiddle rugs for the less able. Other things like trips out (for those able) and activities like PAT dogs and barbeques were arranged. However, if you visited in the afternoon, you would see none of this - activities happened in the mornings and by the afternoon most of them were tired and having a nap in their room, or snoozing in the lounge in front of the TV, which could give you a very distorted view of what happened there. So make sure you visit at different times of the day and ask about any activities - a list of them is often pinned to a notice board.
Do not be put off by there being people in the later stages of dementia. It did not worry mum and it shows that the home can cope with people right up to the end. If your mum is at about the same level as everyone else this probably means that there is a stage in dementia that they cant cope with and once your mum reaches that stage she will be asked to leave.
The home organised activities and several who were still able joined in. They also had things like memory boxes and fiddle rugs for the less able. Other things like trips out (for those able) and activities like PAT dogs and barbeques were arranged. However, if you visited in the afternoon, you would see none of this - activities happened in the mornings and by the afternoon most of them were tired and having a nap in their room, or snoozing in the lounge in front of the TV, which could give you a very distorted view of what happened there. So make sure you visit at different times of the day and ask about any activities - a list of them is often pinned to a notice board.
Do not be put off by there being people in the later stages of dementia. It did not worry mum and it shows that the home can cope with people right up to the end. If your mum is at about the same level as everyone else this probably means that there is a stage in dementia that they cant cope with and once your mum reaches that stage she will be asked to leave.
Just a quick update. A NH has accepted my mum. An assessment will now be completed for the next 4 weeks to see if she need EMI 24/7 care which I think is a formality after her respite care. Luckily the new NH is literally a ten minute drive away. It ain't an all singing all dancing NH like the care home she's just been in but a good CSQ rating and some good reviews make it a little easier. Safe and sound is all I want from a NH. Told mum that where she is is being closed for decorating and the new home is for a holiday. She won't remember this but it'll give her the right feeling of emotion as dad wanted her to know she was moving homes. Hopefully I'll get some needed sleep. Hopefully she'll settle in the new place pretty much like she did in respite. Good luck to all the others that are going through the same. Almost wants me to change careers to make these situations easier for people.
Well things have taken a turn. The care home who accepted mum have now turned round and said they cannot meet her needs after speaking to the home where's she's been in respite. We are back to square one. It's seems that my mum wanders (don't most people with Alzheimer's) going into other people's rooms and removing their pillows. She had a thing for pillows especially for storing stuff in there. It seems that the CH staff have told her not to go into rooms nor take people's pillows. At this point mum has allegedly been aggressive and lashed out at a carer. Never ever has this happened whilst she has been at home. I'm wondering how they spoke to her before she lashed out. Another CH has said they will accept her but with this updated info will they accept her? What I have learnt on this bumpy journey is that NH and CH that advertise they specialise in dementia don't really. Dad is at his wits end and me.......
