Mum update and meal advice please

[Metalpetal]

Hi everyone, so we heard on Wednesday that mum might be discharged and allowed to go back home today after spending the last 4 weeks in hospital. Long story short, we pushed for her to be admitted due to suspecting she was suffering confusion linked new medication she was taking, but she’ll be leaving with a diagnosis of Dementia :-( It’s all happened very quickly it seems and we’re getting our heads around it best we can.

Anyway, unfortunately she won’t be going home today after all - not sure of specifics, but the Consultant Psychiatrist apparently said he wants her in there for another few days at least. Mum will be very disappointed but if they think she needs to stay there a bit longer, then it must be important.

In the meantime, the care services have been amazing. Mum has had a personal alarm installed at home, railings fitted, a banister build by a carpenter, and things like frames around her toilets to make it easier. They’re also releasing her with a good care package - 4 visits a day initially, to be assessed over time. I live 400 miles from mum, and my brother is about half an hour away. So although he can visit, he can’t ‘be on hand’, and the knowledge that she’ll have 4 visits a day is extremely comforting.

The Occ Health person at the hospital has said she’s happy for mum to make cups of tea/coffee and perhaps toast, but that she definitely shouldn’t be cooking. So I’m going to look into meal delivery services today -***** seem to be the provider in Glasgow. I’ve read some posts on here about them, and they sound pretty good. It’ll be pricey I guess, but mum has a decent income and can cover eventually (we’ll do it at first until we have formal access to her finances).

If anyone has any advice around how to manage the whole ‘don’t let her cook by herself‘ thing, I’d love to hear it. Questions I have are along the lines of: How do we STOP her cooking? Should we switch off the gas? Perhaps a note on the cooker to remind her not to use it? Will she be able to reheat meals (poss not) ? Will the delivery people actually bring the meal into the house or just leave it at doorstep? Argh the possible complications seem endless!

Sorry for length of the message but it really helps to talk about it all here. We haven’t told many people about specifics re mum, as we want to try and ask her what she wants to tell people. And of the few friends I’ve told, none have experience of caring for a PWD.

Thanks in advance

 

[Bunpoots]

I can’t see what you can do to stop your mum cooking if she wants to. If she has a gas cooker I would turn it off so she can’t use it and leave a note but notes are often ignored by people with dementia.

My dad could cook and reheat meals in the early stages but he’d often put a ready meal in the microwave and then forget and cook himself something else!

As she’s having 4 care visits a day I suspect she’s passed the early stages and the carers should be dealing with all her meals. I’d contact the care agency and tell them your concerns. My dad needed a meal putting in front of him or he wouldn’t have eaten it.

 

[mayallbeingsbewell]

Hi everyone, so we heard on Wednesday that mum might be discharged and allowed to go back home today after spending the last 4 weeks in hospital. Long story short, we pushed for her to be admitted due to suspecting she was suffering confusion linked new medication she was taking, but she’ll be leaving with a diagnosis of Dementia :-( It’s all happened very quickly it seems and we’re getting our heads around it best we can.

Anyway, unfortunately she won’t be going home today after all - not sure of specifics, but the Consultant Psychiatrist apparently said he wants her in there for another few days at least. Mum will be very disappointed but if they think she needs to stay there a bit longer, then it must be important.

In the meantime, Glasgow care services have been amazing. Mum has had a personal alarm installed at home, railings fitted, a banister build by a carpenter, and things like frames around her toilets to make it easier. They’re also releasing her with a good care package - 4 visits a day initially, to be assessed over time. I live 400 miles from mum, and my brother is about half an hour away. So although he can visit, he can’t ‘be on hand’, and the knowledge that she’ll have 4 visits a day is extremely comforting.

The Occ Health person at the hospital has said she’s happy for mum to make cups of tea/coffee and perhaps toast, but that she definitely shouldn’t be cooking. So I’m going to look into meal delivery services today - iCare seem to be the provider in Glasgow. I’ve read some posts on here about them, and they sound pretty good. It’ll be pricey I guess, but mum has a decent income and can cover eventually (we’ll do it at first until we have formal access to her finances).

If anyone has any advice around how to manage the whole ‘don’t let her cook by herself‘ thing, I’d love to hear it. Questions I have are along the lines of: How do we STOP her cooking? Should we switch off the gas? Perhaps a note on the cooker to remind her not to use it? Will she be able to reheat meals (poss not) ? Will the delivery people actually bring the meal into the house or just leave it at doorstep? Argh the possible complications seem endless!

Sorry for length of the message but it really helps to talk about it all here. We haven’t told many people about specifics re mum, as we want to try and ask her what she wants to tell people. And of the few friends I’ve told, none have experience of caring for a PWD.

Thanks in advance

hello metal petal - certainly a worrying time. In my experience (from being a social wotker many years ago involved in discharges from hospital) people can sometimes be more confused/ disorientated for the first few days/ week, and then it sometimes settles down. Until your mum is duscharged/ at home, it may he hard to say how she will manage. There are often unexpected details that cant be planned for that come up! The carers coming in four times a day will be your best bet for getting information on how your mum is managing. If there is a microwave and you can switch off the gas without switching off water heating etc I dont see any harm in it if your mum can understand that at least for the first week she should rely on carers to help with meals...thats my initial thoughts anyway. Once people are out of hospital, community services like OT can be a lot harder to access, so make the most of the hospital services as long as you can - be demanding if you have to - and ask them if possible to make a referal to community OT for follow up if and when they do discharge your mum from their caseload.

 

[Metalpetal]

hello metal petal - certainly a worrying time. In my experience (from being a social wotker many years ago involved in discharges from hospital) people can sometimes be more confused/ disorientated for the first few days/ week, and then it sometimes settles down. Until your mum is duscharged/ at home, it may he hard to say how she will manage. There are often unexpected details that cant be planned for that come up! The carers coming in four times a day will be your best bet for getting information on how your mum is managing. If there is a microwave and you can switch off the gas without switching off water heating etc I dont see any harm in it if your mum can understand that at least for the first week she should rely on carers to help with meals...thats my initial thoughts anyway. Once people are out of hospital, community services like OT can be a lot harder to access, so make the most of the hospital services as long as you can - be demanding if you have to - and ask them if possible to make a referal to community OT for follow up if and when they do discharge your mum from their caseload.

Thank you - all very very useful. I think I’ll call the hospital today and ask for the contact details of whoever they’ve been liasing with in OT, at the moment we don’t have any details of anyone who coordinates the care visits so wouldn’t have a clue who to contact if we needed to! Which doesn’t seem right... so I can call to get that, and also enquire about meals etc while I’m there. It would be much cheaper to get frozen meals delivered that the carer can heat for mum, but I’m not sure if they’ll do that....

 

[Metalpetal]

I can’t see what you can do to stop your mum cooking if she wants to. If she has a gas cooker I would turn it off so she can’t use it and leave a note but notes are often ignored by people with dementia.

My dad could cook and reheat meals in the early stages but he’d often put a ready meal in the microwave and then forget and cook himself something else!

As she’s having 4 care visits a day I suspect she’s passed the early stages and the carers should be dealing with all her meals. I’d contact the care agency and tell them your concerns. My dad needed a meal putting in front of him or he wouldn’t have eaten it.

Thanks Bunpoots - it’s all a bit bewildering to be honest! We haven’t really been told much as to whether she’s in early stages or not - I guess we assumed she was, due to it very recently developing...but I’ve read that it can be ‘hidden’ by the PWD for a while and so perhaps she’s further on than we think. The hospital have prepared us for the chance that she can’t manage at home, but we agreed it has to be trialled so that we can at least find out how she gets on. If need be, we’ll have to quickly suss out care homes I guess :-/

 

[mayallbeingsbewell]

yes that sounds important to get the details - names and numbers. Make a note of your calls - time and who you spoke to. Be tenacious if necessary because the professionals are usually busy underfunded and stressed. It is certainly part of the carers job to support eating and drinking eg heating meals, making drinks and making sure they are eaten. There will be a care plan which will say what the carers jobs are, and you can ask for it to be updated if it doesnt meet the needs of the situation. Also if possible make sure you are in good communication with other family, as you can then work together/ support each other. (me and my siblings have a whatsapp group) X

 

[lemonbalm]

Will the carers be preparing meals? If not, I used to buy my mum food which didn't need heating, as she couldn't manage the cooker or microwave, or a timer. Things like sausage rolls, pork pies, prepared potato salads, cream cheese and soft rolls, pots of yogurt, custard, fruit pies and so on.

I worried about her using the kettle and got her an instant water boiler so she didn't have to pick the kettle up (she forgot to put the teapot underneath a lot of the time though, so it needed a deep tray underneath to stop hot water spills).

 

[Sirena]

Re the cooker, you must disable it. Leaving notes will not help, she will still go ahead because it is an ingrained habit. If she has a toaster or microwave, be aware she may misuse those too. My mother didn't seem to cause any problems with the kettle. Her main issue was putting toast under the grill and setting fire to it.

Obviously you want the carers to be able to heat meals so you don't want the facilities permanently disabled. The care company should know of ways to arrange this safely. One option is for a gas engineer to put a lever at the back of the cooker to turn the gas on and off, which the carer can access. My mother's care agency simply took the knobs off the gas cooker, hid them on a high shelf, and the carer put them back to use the cooker - that worked fine.

I would have thought you could get appropriate ready meals for the fridge/freezer which the carer will heat up for her, check with the care company. One thing I would say though is that it is a good idea if the carer can witness your mother actually eating the meals. My mother stopped eating, even though food was available, and had to be prompted and encouraged.

Let us know how you get on.

 

[Jaded'n'faded]

Just a few things to consider:

Social Services have put their maximum care package in place for your mum (4 visits a day) so I am wondering if perhaps she's a bit 'further on' than you think. How will she cope by herself all night? If it doesn't work, you'll be moving her to a care home unless you can get night sitters.

Please be prepared for the care package to fail... You mentioned your mum has a good income so would presumably be self-funding which means it will pretty much be left to you to arrange a care home. It might be an idea to start looking now so that you won't have to rush round if a crisis occurs...

 

[nitram]

For the gas cooker consider getting a GasSafe person to install a lockable cοck, she will be unable to use the cooker and a care worker could use it to heat meals.

The fitter will have their own source of supply.

For electrical appliances you can get a variety of lockable switched outlets
e.g.

and lockable covers
e.g

Ask a competent person to supply and fit.

 

[Bunpoots]

My dad's carers would heat up frozen ready meals and make sandwiches or something on toast for him and make sure that he did eat and drink.

I used to order the meals from Wiltshire Farm Foods. - a bit pricey but lots of choice and nice meals and the drivers (CRB checked) would put the meals straight into the freezer so no chance that dad would stash them in a cupboard or the wardrobe!

 

[Alibunchy]

Can I just ask if your Mum was showing signs of dementia for some time before she went in? My dad had been for some years without a diagnosis. He then had an episode of Delirium after my Mum died due to him not eating or drinking properly. He was in hospital for 9 weeks where he was diagnosed with dementia. He was terrible when he was in hospital , thought he was back at work, confused, not sleeping, wandering off, seeing things, and we were seriously thinking he would need to go straight into a Care Home. He was sent home with a Care package similar to yours but this was stopped after 7 days because once he was home he could microwave a meal , make tea etc. He actually greatly improved once home. I think the hospital environment is not good to make a judgement about the care needed. A year later my Dad is still managing alone with visits from myself and my sister and is only just starting to worry us, think this is due to less contact during lockdown. My advice would be to see how she copes once home as she may not need as much care as you initially think. Just make sure everywhere is as safe as it can be. My dad doesn't use the cooker , just the microwave.

 

[TNJJ]

Hi everyone, so we heard on Wednesday that mum might be discharged and allowed to go back home today after spending the last 4 weeks in hospital. Long story short, we pushed for her to be admitted due to suspecting she was suffering confusion linked new medication she was taking, but she’ll be leaving with a diagnosis of Dementia :-( It’s all happened very quickly it seems and we’re getting our heads around it best we can.

Anyway, unfortunately she won’t be going home today after all - not sure of specifics, but the Consultant Psychiatrist apparently said he wants her in there for another few days at least. Mum will be very disappointed but if they think she needs to stay there a bit longer, then it must be important.

In the meantime, the care services have been amazing. Mum has had a personal alarm installed at home, railings fitted, a banister build by a carpenter, and things like frames around her toilets to make it easier. They’re also releasing her with a good care package - 4 visits a day initially, to be assessed over time. I live 400 miles from mum, and my brother is about half an hour away. So although he can visit, he can’t ‘be on hand’, and the knowledge that she’ll have 4 visits a day is extremely comforting.

The Occ Health person at the hospital has said she’s happy for mum to make cups of tea/coffee and perhaps toast, but that she definitely shouldn’t be cooking. So I’m going to look into meal delivery services today -***** seem to be the provider in Glasgow. I’ve read some posts on here about them, and they sound pretty good. It’ll be pricey I guess, but mum has a decent income and can cover eventually (we’ll do it at first until we have formal access to her finances).

If anyone has any advice around how to manage the whole ‘don’t let her cook by herself‘ thing, I’d love to hear it. Questions I have are along the lines of: How do we STOP her cooking? Should we switch off the gas? Perhaps a note on the cooker to remind her not to use it? Will she be able to reheat meals (poss not) ? Will the delivery people actually bring the meal into the house or just leave it at doorstep? Argh the possible complications seem endless!

Sorry for length of the message but it really helps to talk about it all here. We haven’t told many people about specifics re mum, as we want to try and ask her what she wants to tell people. And of the few friends I’ve told, none have experience of caring for a PWD.

Thanks in advance

Some care homes and restaurants do meals on wheels. They deliver it hot and she would have a choice of menu. @Age U.K. might be able to help as well

 

[Rosettastone57]

Hi everyone, so we heard on Wednesday that mum might be discharged and allowed to go back home today after spending the last 4 weeks in hospital. Long story short, we pushed for her to be admitted due to suspecting she was suffering confusion linked new medication she was taking, but she’ll be leaving with a diagnosis of Dementia :-( It’s all happened very quickly it seems and we’re getting our heads around it best we can.

Anyway, unfortunately she won’t be going home today after all - not sure of specifics, but the Consultant Psychiatrist apparently said he wants her in there for another few days at least. Mum will be very disappointed but if they think she needs to stay there a bit longer, then it must be important.

In the meantime, the care services have been amazing. Mum has had a personal alarm installed at home, railings fitted, a banister build by a carpenter, and things like frames around her toilets to make it easier. They’re also releasing her with a good care package - 4 visits a day initially, to be assessed over time. I live 400 miles from mum, and my brother is about half an hour away. So although he can visit, he can’t ‘be on hand’, and the knowledge that she’ll have 4 visits a day is extremely comforting.

The Occ Health person at the hospital has said she’s happy for mum to make cups of tea/coffee and perhaps toast, but that she definitely shouldn’t be cooking. So I’m going to look into meal delivery services today -***** seem to be the provider in Glasgow. I’ve read some posts on here about them, and they sound pretty good. It’ll be pricey I guess, but mum has a decent income and can cover eventually (we’ll do it at first until we have formal access to her finances).

If anyone has any advice around how to manage the whole ‘don’t let her cook by herself‘ thing, I’d love to hear it. Questions I have are along the lines of: How do we STOP her cooking? Should we switch off the gas? Perhaps a note on the cooker to remind her not to use it? Will she be able to reheat meals (poss not) ? Will the delivery people actually bring the meal into the house or just leave it at doorstep? Argh the possible complications seem endless!

Sorry for length of the message but it really helps to talk about it all here. We haven’t told many people about specifics re mum, as we want to try and ask her what she wants to tell people. And of the few friends I’ve told, none have experience of caring for a PWD.

Thanks in advance

My mother in law had three carer visits a day though self funding. Personally, I would have thought that the care plan should include the carer preparing a meal , in my mother in laws case, they reheated a meal at lunchtime in the microwave for her. We tried the hot meals delivery, but my mother in law simply forgot to eat it and left it to one side. We found that the only way for my mother in law to eat was for the carer to sit with her whilst she ate and made it a social occasion. After a while, she wouldn't take any notice of notes , she simply forgot to look at them. As others have already said, it's the nighttime that is the problem and the length of time that the person with dementia is alone, even with carers.

 

[Metalpetal]

yes that sounds important to get the details - names and numbers. Make a note of your calls - time and who you spoke to. Be tenacious if necessary because the professionals are usually busy underfunded and stressed. It is certainly part of the carers job to support eating and drinking eg heating meals, making drinks and making sure they are eaten. There will be a care plan which will say what the carers jobs are, and you can ask for it to be updated if it doesnt meet the needs of the situation. Also if possible make sure you are in good communication with other family, as you can then work together/ support each other. (me and my siblings have a whatsapp group) X

Thanks @mayallbeingsbewell - I spoke to mum's Occ Health person at the hospital earlier and had a good chat with her. I asked if she could give me the contact details/name of the agency who will be providing mum's care, and she seemed a little surprised that I wanted it! She wasn't able to provide it to me herself, as she said it's the nursing staff who coordinate and make arrangements for these sorts of things. But she said she'd ask them if they were able to pass on the contact details to me. I also asked for the name of mum's Social Worker, and again she wasn't sure and said she'd ask the nurses if there is one, and if so who. So that all felt a little vague to me and not terribly reassuring!

As for carers, she did at least confirm that they will be able to heat up/plate meals for mum. So that's a relief. I did ask about seeing the care plan but she really wasn't very forthcoming about that! And yes re family - it's just me and my brother, but we're in regular daily contact and luckily get on very well (and are aligned in our thinking about all of this). I can see from posts on here that I shouldn't necessarily take that for granted!

 

[Metalpetal]

Will the carers be preparing meals? If not, I used to buy my mum food which didn't need heating, as she couldn't manage the cooker or microwave, or a timer. Things like sausage rolls, pork pies, prepared potato salads, cream cheese and soft rolls, pots of yogurt, custard, fruit pies and so on.

I worried about her using the kettle and got her an instant water boiler so she didn't have to pick the kettle up (she forgot to put the teapot underneath a lot of the time though, so it needed a deep tray underneath to stop hot water spills).

Thanks @lemonbalm - yes my brother is going to do a weekly shop and stock up the fridge with bits until we decide whether to do anything else. I've had confirmation that the carers will heat up/serve food so we'll also get some cold bits in too, perhaps for lunches.

I asked mum's OH person about the kettle earlier, and although she said the instant boilers are great, she reckons it could possibly confuse mum, especially during these first couple of weeks. She reassured me that mum seems quite steady and strong when it comes to boiling a kettle and pouring it etc. But of course we'll monitor that. Thanks again.

 

[Metalpetal]

Re the cooker, you must disable it. Leaving notes will not help, she will still go ahead because it is an ingrained habit. If she has a toaster or microwave, be aware she may misuse those too. My mother didn't seem to cause any problems with the kettle. Her main issue was putting toast under the grill and setting fire to it.

Thanks for your reply @Sirena - yes I'll definitely be finding a way to disable the cooker. Hopefully very soon too! She managed to start a kitchen fire when she was well, about 20 years ago, so I'd be on tenterhooks if we don't do something to prevent it happening now!

The alarm company have put her on the waiting list for a smoke detector to be linked to the home hub/call centre thing. But there's a wait of a few weeks apparently. Still, that'll be extra peace of mind once it's in

 

[Metalpetal]

Just a few things to consider:

Social Services have put their maximum care package in place for your mum (4 visits a day) so I am wondering if perhaps she's a bit 'further on' than you think. How will she cope by herself all night? If it doesn't work, you'll be moving her to a care home unless you can get night sitters.

Please be prepared for the care package to fail... You mentioned your mum has a good income so would presumably be self-funding which means it will pretty much be left to you to arrange a care home. It might be an idea to start looking now so that you won't have to rush round if a crisis occurs...

Hi @Jaded'n'faded thanks for your honest words. You're right, it is very possible that this situation will 'fail' - and the hospital have prepared us quite clearly for that. Not just because of the night thing/being alone, but because she has history of 'wandering' pre-hospital! I don't want to waste care homes' time, but it might be worth at least calling a few I guess.... to get costs if nothing else!

I also do wonder if she's further along than we think, you're right to question that. The hospital haven't really indicated that - but then again they haven't said it isn't the case either! They've been lovely and helpful and cared for her well, but the info we're getting does feel frustratingly scant!

 

[Metalpetal]

For the gas cooker consider getting a GasSafe person to install a lockable cοck, she will be unable to use the cooker and a care worker could use it to heat meals.

Thank you @nitram !! That is SO incredibly useful. I'm already on the search for a reputable gas engineer who can help with this. Although I will have to try hard not to titter when mentioning 'lockable cock'!!!! I appreciate that's my mind turning a perfectly normal name, into something crude...but it did tickle me. And you have to keep your sense of humour don't you?! ;-)

 

[Metalpetal]

My dad's carers would heat up frozen ready meals and make sandwiches or something on toast for him and make sure that he did eat and drink.

I used to order the meals from Wiltshire Farm Foods. - a bit pricey but lots of choice and nice meals and the drivers (CRB checked) would put the meals straight into the freezer so no chance that dad would stash them in a cupboard or the wardrobe!

Thank you!!! I've had confirmation that the carers will heat up meals for mum, so I love the idea of Wiltshire foods - she has a large freezer with plenty of space. I guess we'd have to time them arriving when someone else was there though? Although of course mum might be absolutely capable of letting him in and chatting to him etc... I guess we don't know yet! Thanks again, I"ll definitely look them up.