Dan is currently in the hospital. He was vommitting. I thought he just had a stomach virus , but he was really out of it. We look hi to the Emergrncy Room and he has a UTI with bacteria in the blood (sepsis) . He is finally doing better, but isn’t swallowing fast enough to please doctors. They did a swallow study and feel when he holds liquid it trickles downinto his lung. His problem at the point comes primarily from not being engaged in what’s going on.
The recommendations include thickened liquids ( nectar consistency ) and puréed foods. They are hoping as he gets better this may change. I agree that he again may be back to more regular eating for a while, but this is the beginning swallowing problems. He will also now have to be fed. He loved sitting with his bowl of pretzels or nuts.
Any tips or recommendations for this stage would be great.
Thanks
Written by
Karynleitner
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You might get a urine test kit on Amazon and some sample bottles? They are easy to use... but do follow the instructions there is a time window when the test strip should be matched to the colour chart. Just use it if you think there is something wrong.
With pureeing food: We pureed each part of the course separately. So the plate might have potatoes, carrots and say a casserole, all separate on the plate. Makes the food more interesting.
Thanks. It’s a new adventure. Sad, because food and drink was a joy for him. Also, he was able to feed himself a snack. He loved pretzels, nuts, chocolate. He sat with his little bowl and enjoyed it.
Its sad. I also felt so distressed when Chris reached this stage. He had lost so much and eating was such a pleasure for him - especially as I allowed him any treats he desired to avoid further weight loss !!
Its heartbreaking to go along this road of increasing loss.
Such a worry for you. Poor Dan UTI 's are so distressing sounds like he has had a bad one.
I am at the same stage with mum regarding food. Just had the SALT lady this morning. I have no advice as I'm just working my way through this new way of mashed and pureed food ! The thickener that I used three weeks ago is not one they recommend but hey ho I've had to do my best whilst waiting for them to get in touch. I think if I were to give any advice it would be to have patience. it can take up to an hour to feed mum.
It's sad that Dan won't be able to enjoy his favourite snacks hope this is just temporary. Mum loved being left with dolly mixtures or the teddy bear crisps I wouldn't dare risk it now .
Lynda, your reply is just what I posted to Kevin. Dan too enjoyed his bowl of snacks and a Diet Coke. We often treated him with his favorite burger or pork chop. It’s sad to see another thing taken from him.
Also, taking extra time to feed him is a new challenge. I also worry about him drinking as he never takes in enough fluid.
Thank you for the reply. Your understanding is wonderful. Best of luck to you. Mums are so special.
Karyn, I’m so sad to hear that Dan Is in the hospital. John just had a swallow study done last week and are trying to figure out someway to remind him to swallow every hour. Therapy also suggested getting a Provale Cup -5cc (1 teas) on Amazon. This cup regulates the amount of thin liquid he drinks at one time. We also got a straw that also regulates the liquid. The thickening powder is pretty nasty. Ensure would be really good to help as a nutritional base and I also purée a lot of vegetables, puddings, jellos and mashed potatoes. Meat tends not to work so well. Hope some of these tips help. Let us know how you are all doing.
Alice
P.S. how did Dan do at his brothers funeral? I hope he did okay.
Thanks. Dan is coming home today . Sadly, his brother had a memorial service this week, when Dan was hospitalized. It was very sad he was not there. Our son did a beautiful eulogy speaking of Dans childhood with his brother. I hope to show it to him when he’s better.
It was difficult for everyone to have Dan absent.
I will definitely order the cup and give it a try. It sounds like John is having some trouble with swallowing. I’m very sorry to hear that.
Our weather has certainly not helped with my attitude .
a) Prevent solids or regular liquids from reaching the lungs to avoid eventual “aspiration pneumonia,” (Besides falls, this is another very important risk.)
•Add thickeners (eg, Resource from Nestle, Thick-it, Simply Thick-Easy Mix, CVs) to drinks (soups, water, Aquarius (*) orange or lemon or similar without gas, etc.) till obtain a bit glutinous liquid. To drink, it is advisable to use a special cup (Ornamin 815) with the chin as near as possible to the chest. Some mango and peach juices have an adequate consistency.
(*) Isotonic drinks are interesting to help maintain blood electrolytes at the correct level.
•The food must be moderately doughy and in small pieces if solid.
•The speech therapist has insisted that she should not take meals that "deceive" the mechanism of swallowing that is damaged. The foods that “deceive” are those that have liquids and solids in the same bite (eg, some beans with soup or a soup with pasta).
•Check the patient is sitting fully upright to eat and try not to have distractions around while he is eating.
•Making a puree with a hand blender is always a solution, but it is preferable to crush with a fork until a homogeneous paste without liquid and so as not forget the function of chewing. What is not used is lost!
b) Phlegm and choking: The first thing is to remain calm during episodes of truly shocking coughs. The second is that a physician rules out an infection in the respiratory tract. Get a pulse oximeter to control. (Fever is an indication usually either pneumonia or urinay tract infection (UTI) in PSP patients).
•It is not a big problem that the patient swallows his phlegm. For phlegm to be fluid, it is important to drink liquids. Steam inhalation from boiling water in a bowl with a few drops of some floral essence that is pleasant to the patient and a small spoonful of marine salt, with a towel covering head and bowl helps. (One to three times a day.) Medications like "Mucosan" (Ambroxol hydrochloride) twice a day or “Fluimicil Forte-600” (Acetilcisteine) one by day, help. Ask physician.
•In case of choking, raise both arms at shoulder height, breathe only through the nose intensely if posible. I not, inhale air intensely but not very fast through the mouth. Retain air a couple of seconds and then force the cough.
•Also here, to avoid in the diet drinks that can be irritating: coffee, carbonated beverages as pop or soda (or eliminate the gas by agitation before giving it to the patient), chocolate, orange or grapefruit juice, etc., helps. There are some foods to avoid…. things like rice, foods that crumble easily, sticky foods, etc.
•There is a suction machine which helped a lot with the very sticky phlegm. We have NOT used it yet.
•A steam atomizer to keep the air in the room moist helped, too. (40% - 52% moist advisable.)
•The physiotherapists have exercises reinforcing trunk muscles to improve the cough response to choking. Engage a good speech/swallow therapist to learn swallowing techniques.
•Avoid dairy products, especially before bedtime seems to avoid the increase in viscosity of phlegm.
•Raising around 15º a 20º the head of the bed also helps.
Sorry to hear about Dan. Mum is now on lightly blended foods and as she eats so little also "level 2" fortified milks - Altrashot for energy & Altraplen for energy & protein. I am also trying to add "secret" calories, so a knob of butter or a spoon of cream here & there. Not so easy when carers do most of the meals, I know some do but not all I would say have the confidence to doctor things up. They must get so fed up with me & the instructions I leave every day !
All good must be puréed or he will be in big trouble. Ice cream and shakes and pudding etc. don’t take a chance. He will rally. Take the pretzels away. Ha ha.
My hubby loved ice cream, so although he had to give up popcorn, the ice cream was a solace Hope something like that works for Dan. The little treats make the difference between wanting to keep on - or not.
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and best to you both too
Hope something like that works for Dan. The little treats make the difference between wanting to keep on - or not.
Not opening mouth for food.
Has anyone found a thickener that is more palatable than the powdered one used by the NHS? 
Which foods
Swallowing help pls...CBD
The end of my father's PSP journey.
