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Not eating/drinking enough / shunt questions.


Vialdana
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The hospital is having great difficulty getting Andy to eat and drink enough. He pulled out his NG tubes repeatedly till it was either try without it, or fit him with a bridle to try and keep it in place.

Having been advised that a bridle should be a last resort we (the hosp and myself when there) are trying to get him to eat and drink enough through the day.

He's on a soft food diet, with thickened drinks, and doesn't want to eat or drink most of the time. Each day he's bearly getting the minimum he needs and thats only coz when I'm there I push him hard to eat and drink. Yesterday I got 5 cupfuls down him in 4 hours plus a yoghurt and half his dinner, and today 3 cups, all the meds he'd refused/spat at them earlier in the day, and all the main course of his dinner. Bearing in mind I got there at 2pm he'd only had 1 cup of juice and a banana first thing then had got grotty and swore at the nurse and spat at her when she tried to feed him or get him to take meds.

I can't spend any longer per day there - wish I could - but I'm there for about 4 hours, and it takes me about an hour and a half to get there and same getting home on top of that, and I have fibromyalgia myself so I'm right at the edge of my own health collapsing if I'm not careful.

The hospital has suggested I bring in things he likes to tempt him with - not managed to think of much that falls in the 'soft food' diet of puree'd/mashed stuff that I can take in that they don't already have, and I'm getting worried that he's going to go backwards if he doesn't start eating and drinking properly :(

Anyone else have this issue?

Any ideas?

How the heck do I get him to realise he's got to eat and drink more :(

Also - today Andy had a lumbar puncture done and they drained off some fluid partly to check if the infection he had has gone, but partly to check to see if he was getting a build up of fluid. They tell me that he's not got much pressure there which is good, but at the same time he did seem happier after it was done, and I don't know if this was just coincidence, or if less fluid actually helpped him. There was talk that he might not be moving forward fast and that the temp might be going up coz he needs a shunt putting in, and that they might do that tuesday, but now they're re-thinking that coz they're saying the pressure was low and that they think he may still have infection.

Arrrg - right now I feel like I'm starting to go a little bit nuts. Not sleeping well, keep dreaming about all of this and am finding everything very hard. I just wish he'd start co-operating and moving forwards :(

Sorry to sound so negative, I'm exhausted and running out of ideas and coping strategy so if anyone has any helpful tips/hints/ideas/experiences that might help, I'd love to hear from you here or by pm. I'm just so worried.

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How about home made soups, pack full of veggies & blend until smooth? Would he be ok with something like shepherds pie (with the texture of the mince?)

I assume his swallow is affected hence the liquid diet? is he aware that if he doesn't try to eat they will tube feed him possibly by putting a tube into his stomach (my mum had this after her stroke & was tube fed for a long time)?

Keith is our resident chef so I'm sure he will have lots of advice for you on the foods to make.

Have you tried getting cross with him & making him realise how this is affecting you? Having an sah/stroke can affect the way your relationships work & he may actually have no idea he is being so difficult & affecting your health? I know you want the best for him but that can't be at the expense of your own health. Sometimes just laying the facts bare will be enough, if he doesn't eat they won't let him home in the foreseeable future etc.

I really feel for you as I know how bad my Dad was after a major stroke & how hard it was to motivate him to do things to help himself. Stay strong & you can always vent in here

Take care xxx

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Hiya.

It's so natural to be worried but you must look after your health too.

Don't beat yourself up about getting there every day, do you have other people going as well to share the load? I was in London during my stay and my family ended up creating a weekly schedule of who visited when, that way I had visitors most days and it didnt all fall to my husband and mum who were trying to look after the kids too. The important thing was that there was always one visitor who could 'sort things out' if they needed to and give them a list of things to check and ask and then they can update you. Also to be honest n the days i Had no visitors I just slept, but I had my ear plugs and eye mask to help which I could put on myself.

Most food in hospital is pretty poor and their 'boost' drinks they give you are pretty gross so I agree that taking things in to tempt him is a good idea. I lost masses of weight post having shunt placed so given extra vitamins, On the fortified drinks thing I found the only one that tasted decent was 'build Up' in vanilla flavour but only if it was made with ice cold milk. A homemade smoothie might be nicer idea. Keith I hope will come up with some cool ideas for you. I also liked raspberry jelly with cream.

I have far to many theories about CSF pressure maybe i will start another thread on those;-)

When my CSF is high for me my appetite gets suppressed ( when it went mega high prior to shunt I physically couldn't eat, it was weird). So I may be alert and responsive but I just won't have any desire to eat. Its just the opposite when it goes to low is that I can eat fine but start being sick and can't stand the light. Now I have my shunt it only goes low but I have to be vigilant that i don't get 'high' symptoms.

The challenge with CSF is that they just don't know what 'normal' is.

If he is low pressure then make sure he lies flat for a while, if he's high pressure raising his pillows will ease head pain. If he needs a shunt then i can only say that it has helped me to better manage the pain and extremes of CSF pressure which aren't nice as many here can attest to. High or low pressure combined with recovering from the effects of the SAH is a blooming horrible so if it eases that for him it's probably a good plan .

Can he communicate with you? A message / alphabet board might be helpful to communicate how he is feeling or what he wants. Make one up so that it's easy for him to tell you how he's feeling.

Can you read to him or share some of the posts on here with him? Sometimes knowing other people have come through similar helps. I didn't find this group until 6 months in but they have held my hand and given me the courage and support at times when no one else could quite understand.

My best wishes.

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hi vialdana

please take a step back it is very early days in hubbys recovery the more they push the more he will rebel

ive been through it with my lin

let hubby make the moves himself encorouge [spelling ] but dont push because if he is still suffering an infection this could change his demeanor and can be very anti and he will be very resentful all because of the infection , not his own wish .

one thing i know is lin likes choclate and ice cream as tasters the fact you can encourge him to eat maybe down to your good self and maybe the staff dont have the time to encourage him to eat there is another way the hospital may choose if hubby continues to rebel and that is to insert a peg tube into his tummy as a temperary solution and feed him that way untill he gets the knack of eating down pat it sounds horrible but its not honest it means thta hubby get all he needs untill he is stronger and magaes to improve his swallow reflex and it can be removed once everything is back on track

it is normal to take two steps forwards on one back that i found out the hard way its a roller coaster ride whih many have to travel even though they dont like roller coasters i know i hated them before now even more but it does get better in time promise

the fact it seemed happier after the lumber drain was carried out makes me think he may need a shunt inserted but this will be the drs choice once he see's hubby i know lin was better after her shunt was done the main thing now is that YOU take care of yourself and try and step back and rest yes i know it sounds hard i had it said to me for many months in fact our friends are still ramming it down my throat lol mind you ive lost a lot of weight lol

is there anyone who could cover for a day or so so you can have a breather because who is going to care for him if you fall ill god forbid i will pm my number if you want a chat i will be here take care regards to hubby

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Hi Vi,

I Love pie mash and liquor(parsley sauce). Yuk you might say but I was bought up on this and jellied eels etc.

When I was on pureed food I cannot remember, but hubby told me he got me some pie and mash they blended

it and brought it up in flask. They said I really enjoyed it.

Does hubby like stews if so you could blend them ? or they do drinks like actimel yuk lol but I had sepsis.

I was always pulling pipes out (feeding tubes) I was a pain lol

My daughter saw a carer supposedly feed a patient, she tried a few spoonfuls but the patient kept coughing, my daughter said carer walked off somewhere.

When they came back she told nurse she/patient did not want it.

Since then my husband made sure I was never left alone, hence the diet I am on now, I love food.

Good Luck to you both and do not give up xx

WinB143 xx xx

Edited by Winb143
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The hospital is having great difficulty getting Andy to eat and drink enough. He pulled out his NG tubes repeatedly till it was either try without it, or fit him with a bridle to try and keep it in place.

Having been advised that a bridle should be a last resort we (the hosp and myself when there) are trying to get him to eat and drink enough through the day.

He's on a soft food diet, with thickened drinks, and doesn't want to eat or drink most of the time. Each day he's bearly getting the minimum he needs and thats only coz when I'm there I push him hard to eat and drink. Yesterday I got 5 cupfuls down him in 4 hours plus a yoghurt and half his dinner, and today 3 cups, all the meds he'd refused/spat at them earlier in the day, and all the main course of his dinner. Bearing in mind I got there at 2pm he'd only had 1 cup of juice and a banana first thing then had got grotty and swore at the nurse and spat at her when she tried to feed him or get him to take meds.

I can't spend any longer per day there - wish I could - but I'm there for about 4 hours, and it takes me about an hour and a half to get there and same getting home on top of that, and I have fibromyalgia myself so I'm right at the edge of my own health collapsing if I'm not careful.

The hospital has suggested I bring in things he likes to tempt him with - not managed to think of much that falls in the 'soft food' diet of puree'd/mashed stuff that I can take in that they don't already have, and I'm getting worried that he's going to go backwards if he doesn't start eating and drinking properly :(

Anyone else have this issue?

Any ideas?

How the heck do I get him to realise he's got to eat and drink more :(

Also - today Andy had a lumbar puncture done and they drained off some fluid partly to check if the infection he had has gone, but partly to check to see if he was getting a build up of fluid. They tell me that he's not got much pressure there which is good, but at the same time he did seem happier after it was done, and I don't know if this was just coincidence, or if less fluid actually helpped him. There was talk that he might not be moving forward fast and that the temp might be going up coz he needs a shunt putting in, and that they might do that tuesday, but now they're re-thinking that coz they're saying the pressure was low and that they think he may still have infection.

Arrrg - right now I feel like I'm starting to go a little bit nuts. Not sleeping well, keep dreaming about all of this and am finding everything very hard. I just wish he'd start co-operating and moving forwards :(

Sorry to sound so negative, I'm exhausted and running out of ideas and coping strategy so if anyone has any helpful tips/hints/ideas/experiences that might help, I'd love to hear from you here or by pm. I'm just so worried.

Hello! My name is Sally and my twin sister, Lynn had a SAH in May 2012. Your husband is at a very early stage and you must not worry about his lack of eating. Lynn also started on Ensure drinks etc, but had no appetite and her taste was all over the place. (See the my story section) Keep using the drinks as food may be alien to your husband just now. Lynn has taken months to regain her sence of taste. A Nurse described an SAH to me as the worst case of flu ever! Lynn wants to eat all her favourite things and is disappointed when they taste yucky!

It is only in the last few weeks that Lynn has started to eat asparagus soup, crisps, chocolate and dates! For months, she lived on creme caramels and Ensure drinks! She has lost a lot if weight, but will put this on again. Lynn wanted sweet things initially. Please don't try to force your husband to eat normally. The hospital staff won't understand this aspect of his recovery!

I just told Lynn about you and she said "drink Ensures and take time!"

I described the recovery as the baby stage! It's like people who suffer this have to go back to the start, but on fast forward! Lynn still had aching muscles and bouts of sneezing, just like flu.

Lynn and I are thinking about you both as we know how you feel!

Big big hugs!

Sally.

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Sally here again! Lynn says to concentrate on the vanilla and strawberry drinks as the others were horrible!

My user name is Sally, if you want to ask anything. I feel you are going through exactly the same as me.

Sally xxx

Edited by Skippy
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