Information needed please!!!

Hi, after a weekend of choking, the speech therapist has just told me to purée all S's food.

I know this conversation has been talked about before, but like everything with me, in one ear, out the other, or should I say eye! Anyway, can any of you give me suggestions for snack lunches. Won't be allowed his precious sandwiches anymore! What type of blender is the best? Any other information will be gratefully received. It all seemed pretty obvious until now I am actually here!

The referrals are out, regarding having a Peg. He'd has decided that he certainly wants to consider it, when he has all the facts. Not sure how I feel. I know he can't go on like he is at the moment. Sooo tired from the constant coughing and spluttering.

Lots of love

Heady

41 Replies

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  • Awe god heady I'm so sorry

    Dad has fortisip, they come in all different flavours and dad likes them

    Apart from that we blend banana with milk and a lil Icecream or angel delight or custard

    Spaghetti hoops are good with scrambled egg or mash potato

    So difficult I know, hope u get better advice than mine lol

    Let me what you both decide on the peg, dad is still undecided

    As for a blender I just use our mixer which mashes everything

    Huge hugs x

  • Spaghetti hoops is a good idea, he loves them, can't even stand the smell myself!!!

    Lots of love

    Heady

  • Lol

    They smell similar to baked beans which I hate!!

    Go NannaB on the recipes much better advice than mine

    Suggest you get cooking heady lol x

  • You know Heady I, we sort of skipped the liquified stage and went right to PEG. If I'd been more organized and less frightened, we could have survived for a couple months on smoothies! My sons makes these awesome smoothies with Kale, Spinach, fruit, carrots (not recommended for the dysphasic) with a bit of ginger and Ican't remember what but he tries to get protein and as many vitamins as he can...he , my son, practically lives on these. They are thick and usually easy to swallow. You might go that way for breakfast or snack. And you can throw in a protein drink if you like.

    I know one thing, its time to get to the down and dirty and ask your husband how he still feels about the PEG. Get him some info.....It does not hurt though some are bothered by its presence. It its an easy feed and the nutrient has everything he needs...If his quality of life ( I hate that phrase) is dependent on nutritional support, PEG is not a bad way to go.....though as for me and myself no thank you please....

    AVB

    Smoothies can be made of all sorts of goodies! and any blender will do.

  • We skipped the puréed food as well and went for the PEG. It's been 23 months since it I was inserted and we're finally to the point that her saliva is now causing aspirations. So it definitely extended her life for at least 22 months and I wouldn't take a billion dollars for that time.

    Love you Heady!

    Ketchupman

  • Yes, I don't think S is ready to leave us yet. Still feel he has a bit of quality of life left. I am all for the Peg, if it improves his life, but the thought of it just prolonging his death, fills me with horror.

    Thanks for the love, feel in a frightening, out of control spin at the moment, (just for a change!)

    Sending big hug and lots of love

    Heady

  • Thanks Ketchupman, M at 16 months of PEG and I agree it has given us a settled extended period of life which no money could replace. The memories and experiences have added to our family life. Admittedly M's quality of life has reduced but she does not want to give up and though poorly still wants to go out in the sun, wind or rain daily. Best wishes to Kim. Tim

  • I used a Russell Hobbs liquidizer as it turns everything into a soft purée. I found lunches or light suppers the most difficult. Main meals I liquidised what I had but separately. It took a while but I'd do the meat in gravy and then put the vegetables through a potato ricer, liquidising when C needed everything very wet and smooth. I always kept veg separate so his plate looked like an artists palette.

    For lunch I would make soup or buy tomato soup which he loves but liquidize it with a slice of bread. I made breadcrumbs and put them in whisked eggs which I cooked in a frying pan with very little stirring. Almost a very soft omelette. C couldn't cope with the uneven texture of scrambled eggs but S may be able to.

    I liquidised poached fish in white sauce and served with soft milky, buttery mashed potato and also finely grated cheese served with mashed potato and seived tinned tomatoes.

    I started to buy tinned minced beef as it was very soft. I found fresh minced beef was never smooth enough. I still liquidizer the tinned beef.

    I made a lot of casseroles and stews, liquidizing all the ingredients separately for dinner and then made what was left into a soup for the next day.

    Tinned tuna in Mayo works well as does salmon liquidised in Hollandaise sauce.

    There are lots of prepared soft puds in shops. Banana or rhubarb whisked in custard is good but C can still manage, and loves, chocolate puddings like Mars, aero, milky bar. I now look for the things with the most calories in to build him up.

    I quite enjoyed trying out different meals but must admit, I hated washing thhe liquidizer.

    Colin had liquidised food for nearly two years before the PEG was needed.

    Have fun experimenting.

    X

  • Gee, thanks NannaB, not a happy bunny, sounds far to fiddly for my liking! Especially as he told the ST, via his white board, it was all my fault he choked!!! Good idea about the tinned meat, I suppose tinned veg will be the same. Least it would do, for prepping meals in advance. Not sure I want to constantly eat food that's good to go in the blender and I have NEVER been one to provide different meals. Just when you think you can't hate this disease any more than you do, it find a way to get under your skin even more!!!

    Lots of love

    Heady

  • Thank you - This is going into my 'What my husband will need to know" folder - Great post

  • I am afraid i now cheat on the dinner front now and again and i get some from wiltshire farm foods. They do 2 types soft (Brian has these ones) or a pureed meal. They also do a pureed sandwich so he can still have his sandwich (we have not tried them yet)

    As for lunch i tend to do soup with fresh breadcrumbs or a nice custard or scrambled eggs.

    Don't forget that you can do a large batch of one item then liquidise in portions. That way at least one day a week you won't have to get the liquidiser out.

    I bought a nutrininja to do the liquidising and it makes a lovely smoothie wich not only counts on the five a day keeps the bowels going and can be thickend with the thick and easy stuff if not thick enough. Janexx

  • Thanks Jane. I had thought I might stock a few Wiltshire foods products.

    Lots of love

    Heady

  • Wiltshire farm foods, great idea, thx Jane hadn't thought of that!! X

  • Hi my dad had soup a lot with bread mushed into it and lots of chocolate cake with cream all mashed up! He loved that. Mum made smoothies too and smash went down well. He had a peg fitted about 6 weeks ago in the hope of still eating a bit and then having a top up feed over night, but after the op was so tired that he choked a lot and so they put him on nil by mouth in the hospital and be hasn't had food since as he was there 3 weeks.he has fortisip 6 times a day now.

  • What is Fortisip? Is this a USA supplement food? Sorry for my ignorance, like everything else with this evil disease, we have to learn very fast about the new stage we find ourselves in!!!

    Lots of love

    Heady

  • No I live in uk. The nutrition nurse prescribed it but my mum got it in a supermarket before that. It's a drink that will give you enough calories for the day without having to have anything else. My dad has 6. 3 compact ones and 3 fibre ones. Things change so quickly don't they. Hope this helps. Sorry that you are having to go there too!

  • I'll have a look today. I have got Complan, which I give him, if he hasn't eaten much. But the fibre one sounds just what he needs.

    Thanks.

    Lots of love

    Heady

  • Oh now you have mentioned complan I remember that's what mum bought- cheapest in sainsburys by the way. You can drink fortisip though and it comes in flavours so it might be worth asking doc about it.

  • Just add "nutritionist" to your ever expanding CV, Heady. Sending love .X

  • Heady

    Our GP supplies the fortisip

    They come in all different flavours and dad really likes them, he has strawberry chocolate and vanilla

    A great meal replacement

    Ask your GP to order them for you

    X

  • Not there yet heady but I've saved this post because full of good advise. Ben has definitely said he doesn't want a PEG fitted and has made an advanced care plan to say he doesn't want things done that will extend his life. He will have antibiotics thank goodness. I have just been making batches of baby food for my 6 month old grandson and freezing them, something to do whilst I'm stuck here in Bristol, good practise for later I think. Also Spring cleaned the house, done the garden. Bet my son and daughter in law will be delighted when they return from holiday on Saturday. Can't believe that you can buy puréed sandwiches, think I would give that a miss. Take care Heady and I happy cooking! ( or cheating!)

    Love Kate xx

  • I am so sorry to hear all this and what you are going through. My husband is eating slightly adapted "normal" meals at the moment. What fills me with dread is that he hates the texture, "creamy" . He would never eat anything such as yogurt, cream, smoothies, thick soup or gravy etc. It would make him retch. He is not keen on a peg.After reading your posts, I am anxious about the future more than ever. Has anyone any ideas please? X

  • Think I would start fighting that battle now, rather than wait until a puréed diet is needed. Just gradually start serving softer food, so he doesn't notice!!! Best of luck!!!!

    Lots of love

    Heady

  • Thanks. The thing is, he chokes on liquids, not solids if they are small enough. He can even eat crisps. Did you experience this and did the ability to swallow food as well as drink diminish over time? I have some thickener that he doesn't like, but I might try a bit in his drinks in the hope that it doesn't spoil the taste. Sorry to bother you when you are busy liquidising etc. But you have been there and are one of our experts. X

  • Yes it is the fluids that S chokes on. He too, can still eat crisps. At the weekend, it was the only thing he ate, without choking!!! I don't think the thickeners affect the taste, just the texture is strange. Not that I have tried it, looks disgusting, but I'm not telling S that!!!

    I would talk to your Speech therapist before going on to thickeners. Silly to force things down if not needed yet. She should be able to advise you about your husbands dislike for creamy textures. It was more giving him mushy curries or pasta dishes, Cottage Pie etc., I was suggesting! "Normal" meals that are naturally easier to eat!

    As to me being an expert......... Big laugh. How can anyone have experience with this bloody disease? No two days are the same, as soon as you nearly get one problem sorted, another come whizzing your way. Spent Thursday having a meeting with District nurses to sort his bowels out and hey presto, Friday his swallowing goes AWOL! None of us can win, no matter what stage our loved ones are at, it's still new and frightening. That's why this site is SO invaluable to us, it gives us the heads up for future problems, recognising them quickly, so things can be put in place quicker. I'm positive, reading the posts has kept S a lot fitter and better cared for, than he would have been, if I wasn't in contact with everyone here.

    One other thing to point out, nobody posting on this site, is too busy "to be bothered" We all need each other, I NEED the help and support I am getting with this problem. I NEED to be able to give back that help and support as well! We learn from everyone's experiences, what works and what doesn't. I have been on this site for nearly three years now and am basically just passing on, what others have advised me. You will be/are doing exactly the same!!! I'm sure you already know, just talking to someone who understands, is the best support you need!

    Lots of love

    Heady

  • Thanks Heady. You are right. I am just confused as to why food has to be puréed when they don't choke on food. PS Pasta and tomatoes are out too, all sauces! X

  • If they are aspirating, any lumps in the food could get stuck in their airways. So puréed food is safer. Liquids make them choke, as the swallowing action has to be quicker than someone with PSP can do. Hope that makes sense. That's how I understand it!

    Lots of love

    Heady

  • So tricky, so scary! Thank you. Sending a big hug, you deserve it! X

  • It's not scary when you are in the middle of it. Life goes on and you find a way of carrying on!

    Lots of love

    Heady

  • Forgot to say Sp. Therapist gave us thickeners over a year ago, but it is the texture, not the taste that he can't stomach. X

  • yes yes yes, Heady! All very true!

  • Hi M swallow function went quickly so only a few months on purée foods. I used a hand blender and puréed most food what I ate M had but blitzed (it made most food look unappetising but taste was actually enhanced: could be my cooking). Only thing I had issues with was bread does not blitz easily but helped thicken soups if allowed to soak, no crusts.

    The PEG decision needs to be made very quickly as weight loss happens alarmingly fast. Information available from PSPA, as well as district nurses and GP.

    Good luck Tim

  • Thanks Tim, it's not so much the main meals, but snacks for lunch. Haven't the energy or even want to start cooking at lunch time. S not that fond of soup, but it that's what it takes, well I don't suppose he has a choice! Thankfully, we have an excellent Speech Therapist, wouldn't want to rely on DN's or the quack!

    Lots of love

    Heady

  • What is the prognosis after refusing a PEG once swallowing becomes an issue? B's had some recent experiences of not being able to swallow, mostly when he's fatigued, and it's been a frightening wake-up call that things will go in that direction and a decision will need to be made. He's got an advanced directive refusing life-saving options, but that was done at the beginning of the disease. I know that fear and life's nature to cling to life may change his mind. I'd like to be prepared for what is to come, should he get to this point.

    Thanks for any information you can give to prepare us.

  • Sorry I don't know. Would like the answer myself and how much extra time a Peg gives. I am guessing it's like everything else, it depends on the patient and what stage the swallowing becomes an issue. Hopefully someone will read and answer your post.

    Lots of love

    Heady

  • Chris , thank god, can still eat, albeit slowly and occasional coughing. I will keep all this info. Does everyone have this problem eventually ?

    As eating is his main pleasure now I do wonder about " quality of life " when he can no longer eat or move.

    Its a scary prospect.

    Love and hugs, Heady. It seems non-stop for you lately.

    Jean x

  • I do feel as if I am hanging off the edge of the cliff again! In fairness, the puréed diet seems to be working. No coughing or choking tonight. Just noises of enjoying his dinner. Even managed to say "tasty". As my daughter has just said to me, I have got use to doing everything else, I will get use to puréeing his food, or if needs be, feeding him through a tube. Let's be honest, it has to be easier than watching him coughing and choking all the time.

    Lots of love

    Heady

  • We keep saying " the new normal " don't we ? But it changes too quickly. Glad he enjoyed his meal .

    love, Jean x

  • I have asked the or kinsons nurse and others about getting the peg done for John , it's wearing me out stressing about his feeding and he is losing more weight . It's been a nightmare trying to catch him having switched in time where he is responsive bought to cope with even just opening his mouth , on top of that the carers usually tie up the same time and while they are seeing to him he switches back off again.

    I am going to ring the therapist tomorrow to ask them to visit .

    He even finds drinking the the Nutilis drinks through a straw .

    The nurse said it's too intrusive. John is 82 . I know it's not young but my mu had a peg fitted at ninety when she had a stroke

    I believe it can be done with a local anesthetic .. I read they use a spray to numb the throat . I don't know how that would affect his Parkinsons though not that I think it will be any worse than he is now though

  • Heady have you seen the pictures of the puréed sandwiches on Wiltshire farm catalogue, they look good, I couldn't believe the puréed meal either, my aunt has them sometimes they look like real food, bit pricey tho

    Lots of love

    Debbie xx

  • Yeah, they are a bit pricey. Makes Costa seem cheap!!! Might be worth keeping a few in the freezer, but it still will take 30 mins to defrost and cook. No quick five minute lunch anymore!

    Lots of love

    Heady

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