Fortified/Enriched Drinks

[LewyDementiaCarer]

Hello, quick question for anyone that is kind enough to share:
We are caring for a PWD at late/end of life stage, at home, as discussed with Dr & family.
As expected in this stage, she is often unable to eat, and other days she only eats just a few spoons of soft foods. We've requested prescription from the Dr for fortified/enriched drinks, which was tried to push through by the Dr & pharmacy, but got denied in the system...

So my thinking is we can order some ourselves, but I wanted to ask which kind of fortified/enriched drinks are normally used/recommended (I realize it's not going to change a whole lot as we are in a downward spiral, but I really want to at least try to give her something with some decent nutritional value, not just a sugary/chemical ****-storm sports drink).

As an aside: I'm massively disappointed in the lack of medical support we are getting in the home setting. It's been an endless battle for 4 years, including getting a diagnosis which took years in itself, then prescribing inappropriate medications which we had to ask for different options, then they keep saying they will send out a nurse to assess things so we can get better support, and nothing happens for months, no matter how much we keep asking for an end of life assessment. Now they are even denying fortified drinks for someone who is struggling to eat?! How am I supposed to have faith that they will support her in a timely manner with pain medication etc as needed if her breathing declines or she is in distress going forward? -
Sorry... I'm just needing to vent today.

 

[albo]

Hello, quick question for anyone that is kind enough to share:
We are caring for a PWD at late/end of life stage, at home, as discussed with Dr & family.
As expected in this stage, she is often unable to eat, and other days she only eats just a few spoons of soft foods. We've requested prescription from the Dr for fortified/enriched drinks, which was tried to push through by the Dr & pharmacy, but got denied in the system...

So my thinking is we can order some ourselves, but I wanted to ask which kind of fortified/enriched drinks are normally used/recommended (I realize it's not going to change a whole lot as we are in a downward spiral, but I really want to at least try to give her something with some decent nutritional value, not just a sugary/chemical ****-storm sports drink).

As an aside: I'm massively disappointed in the lack of medical support we are getting in the home setting. It's been an endless battle for 4 years, including getting a diagnosis which took years in itself, then prescribing inappropriate medications which we had to ask for different options, then they keep saying they will send out a nurse to assess things so we can get better support, and nothing happens for months, no matter how much we keep asking for an end of life assessment. Now they are even denying fortified drinks for someone who is struggling to eat?! How am I supposed to have faith that they will support her in a timely manner with pain medication etc as needed if her breathing declines or she is in distress going forward? -
Sorry... I'm just needing to vent today.

Hi your local pharmacist will know about these drinks there is one called Fortisip which I think is milk based so like a milkshake and one called Fortijuice which is a juice,there may be others but they are 2 of the main products available.I heard about them from my mum's carers and I did ask the pharmacist about them.I'm sorry I can't help more.

 

[LewyDementiaCarer]

Hi your local pharmacist will know about these drinks there is one called Fortisip which I think is milk based so like a milkshake and one called Fortijuice which is a juice,there may be others but they are 2 of the main products available.I heard about them from my mum's carers and I did ask the pharmacist about them.I'm sorry I can't help more.

Thank you. That's actually very helpful! I should have thought of just asking at the pharmacy what is suitable, I guess my brain is frazzled with everything lately. Really appreciate the reply and information. We'll check out what they have at the pharmacy and how much it is vs ordering something similar in bulk online. x

 

[Littleeva]

Hello, quick question for anyone that is kind enough to share:
We are caring for a PWD at late/end of life stage, at home, as discussed with Dr & family.
As expected in this stage, she is often unable to eat, and other days she only eats just a few spoons of soft foods. We've requested prescription from the Dr for fortified/enriched drinks, which was tried to push through by the Dr & pharmacy, but got denied in the system...

So my thinking is we can order some ourselves, but I wanted to ask which kind of fortified/enriched drinks are normally used/recommended (I realize it's not going to change a whole lot as we are in a downward spiral, but I really want to at least try to give her something with some decent nutritional value, not just a sugary/chemical ****-storm sports drink).

As an aside: I'm massively disappointed in the lack of medical support we are getting in the home setting. It's been an endless battle for 4 years, including getting a diagnosis which took years in itself, then prescribing inappropriate medications which we had to ask for different options, then they keep saying they will send out a nurse to assess things so we can get better support, and nothing happens for months, no matter how much we keep asking for an end of life assessment. Now they are even denying fortified drinks for someone who is struggling to eat?! How am I supposed to have faith that they will support her in a timely manner with pain medication etc as needed if her breathing declines or she is in distress going forward? -
Sorry... I'm just needing to vent today.

So sorry to read that your getting little support and you have a right to vent your anger , I give my mam jelly drops these are like jelly sweets but increase hydration obviously they won’t build the person up but we all know how keeping a loved one hydrated is so important

 

[Newbie 3]

Hello my Mother receives these on prescription Fresubin and Ensure they come in a variety of flavours (Mum like vanilla and strawberry) usually only takes a couple of days from order to delivery to the Chemist

 

[albo]

Thank you. That's actually very helpful! I should have thought of just asking at the pharmacy what is suitable, I guess my brain is frazzled with everything lately. Really appreciate the reply and information. We'll check out what they have at the pharmacy and how much it is vs ordering something similar in bulk online. x

Hi I can totally relate,it's difficult to think straight isn't it.They both have quite a lot of calories and I think 26 important vitamins and minerals.You could maybe grab a couple from the shop and then as you've said look online and have a good search as you can often find things cheaper not buying directly from the manufacturer! Good luck, you're doing your best x

 

[LewyDementiaCarer]

So sorry to read that your getting little support and you have a right to vent your anger , I give my mam jelly drops these are like jelly sweets but increase hydration obviously they won’t build the person up but we all know how keeping a loved one hydrated is so important

Oh I've never heard of these... thank you so much I will look into trying this too! Much appreciated. x

 

[LewyDementiaCarer]

Hello my Mother receives these on prescription Fresubin and Ensure they come in a variety of flavours (Mum like vanilla and strawberry) usually only takes a couple of days from order to delivery to the Chemist

Hi, thank you for this. I'm going to see if the pharmacy will sell us this or something similar without prescription. I really appreciate the information! Thank you so much for sharing.

 

[Jessbow]

who is blocking having them prescribed? My m in l has them on pescription from GP

 

[sdmhred]

Gosh almost everyone on mum’s floor in her nursing home is on either fortijuice or fortisip

 

[Sonya1]

Hello, quick question for anyone that is kind enough to share:
We are caring for a PWD at late/end of life stage, at home, as discussed with Dr & family.
As expected in this stage, she is often unable to eat, and other days she only eats just a few spoons of soft foods. We've requested prescription from the Dr for fortified/enriched drinks, which was tried to push through by the Dr & pharmacy, but got denied in the system...

So my thinking is we can order some ourselves, but I wanted to ask which kind of fortified/enriched drinks are normally used/recommended (I realize it's not going to change a whole lot as we are in a downward spiral, but I really want to at least try to give her something with some decent nutritional value, not just a sugary/chemical ****-storm sports drink).

As an aside: I'm massively disappointed in the lack of medical support we are getting in the home setting. It's been an endless battle for 4 years, including getting a diagnosis which took years in itself, then prescribing inappropriate medications which we had to ask for different options, then they keep saying they will send out a nurse to assess things so we can get better support, and nothing happens for months, no matter how much we keep asking for an end of life assessment. Now they are even denying fortified drinks for someone who is struggling to eat?! How am I supposed to have faith that they will support her in a timely manner with pain medication etc as needed if her breathing declines or she is in distress going forward? -
Sorry... I'm just needing to vent today.

How awful that you are feeling so unsupported! My father's nursing home use Ensure drinks to supplement for those residents in need of extra nutritional support.

 

[LewyDementiaCarer]

who is blocking having them prescribed? My m in l has them on pescription from GP

No idea. We are in Spain, and the Dr sent a prescription to the pharmacy, the pharmacy then told us that the prescription was put on 'hold' in the system and the Dr needed to request an 'emergency authorization'. So the family contacted the Dr to do that, and the Dr said she tried but the prescription had now been 'denied' by the system.

-It just seems so crazy that the 'system' can over-ride the Dr like that. No idea what is going on, but it's insanity at best. I can't help getting frustrated over it. I have zero faith in getting adequate medical support at this point.

 

[LewyDementiaCarer]

Gosh almost everyone on mum’s floor in her nursing home is on either fortijuice or fortisip

Yes, I think it's insanity that the system won't prescribe it here.

 

[LewyDementiaCarer]

How awful that you are feeling so unsupported! My father's nursing home use Ensure drinks to supplement for those residents in need of extra nutritional support.

Thank you for the information, it's very helpful. I'm going to try and get the family to order some privately, as I guess that's our only option now. It's so worrying going into these final stages at home with such little medical support when it's needed. I really appreciate the replies. x

 

[SeaSwallow]

If you cannot get access to the fortified drinks something like Complan might be an alternative, though it would not be as good as the fortified drinks.

 

[LewyDementiaCarer]

If you cannot get access to the fortified drinks something like Complan might be an alternative, though it would not be as good as the fortified drinks.

Thank you, that's very helpful to know. I'll keep that in mind as a back up if we struggle to get hold of the fortified drinks. Much appreciated! x

 

[Jaded'n'faded]

I wonder if you have the equivalent of the SALT Team we have here? That's Speech and Language Therapy which seems odd but they actually deal with people who are struggling to eat or with swallowing. When people with dementia reach this stage they're usually referred to Salt because they are specialists.

If there's something similar where you are it would be worth contacting them directly or ask for a GP referral. Have you discussed End of Life options for your PWD with their doctor?

 

[sdmhred]

What is the actual block in the system for getting these prescribed? They are so commonly used in late stage dementia I can’t quite understand why you are being refused them?

Many carers have the opposite trying to stop the drinks being given when the person is now ready to die.

Its all gone crazy ….I‘m sorry ur not getting support at home.

Have you admiral nurses in your area to support you?

 

[LewyDementiaCarer]

What is the actual block in the system for getting these prescribed? They are so commonly used in late stage dementia I can’t quite understand why you are being refused them?

Many carers have the opposite trying to stop the drinks being given when the person is now ready to die.

Its all gone crazy ….I‘m sorry ur not getting support at home.

Have you admiral nurses in your area to support you?

I have no idea why it was blocked and can't comprehend how 'the system' can override the Dr's prescription, and the pharmacy were trying to help us too... So who or what has the authority to stop it? It's beyond bizarre to me that it was denied by 'the system'. We are in Spain and also trying to get nursing support at home as she is clearly in late-end stage, somewhat stabalized in the last few weeks but unable to communicate and eats only a few tbsp of soft/pureed food when she can, so losing weight very rapidly. We have been waiting about 3 months already for a 'nursing assessment' (when they are supposed to come out and assess for further medical support), but despite harassing the Dr endlessly, they just never even book an appointment day to come out, they just say there is a waiting list). It's beyond ridiculous at this point. I'm pushing the family to seek private medical/nursing assistance, as the system is useless at present, but even that is hitting brick walls so far because she is registered in the national system they say they can't interfere... I'm at a loss with this nonsensical void we have found ourselves in. Nothing makes any sense.

 

[LewyDementiaCarer]

I wonder if you have the equivalent of the SALT Team we have here? That's Speech and Language Therapy which seems odd but they actually deal with people who are struggling to eat or with swallowing. When people with dementia reach this stage they're usually referred to Salt because they are specialists.

If there's something similar where you are it would be worth contacting them directly or ask for a GP referral. Have you discussed End of Life options for your PWD with their doctor?

I've pushed the family to discuss this with the Dr, and they did, but all we received was a confirmation n'not to worry' and that they will come around and see her if needed + a prescription for thickening agents for liquids, which we are grateful for and use (otherwise she chokes on thin liquids), and as for food I make everything at home soft or pureed to a consistency that she can manage to swallow without coughing. We were supposed to have a nurse come out and provide an assessment for further medical support, but 3 months in, and still asking the Dr continuously, we just are told there's a waiting list so still don't even have a date for an assessment. I'm so frustrated with it all, it's like they just don't care.