my mum has been on a soft and moist diet for a while now and level 3 thickener in drinks but the coughing is getting worse again. We’ve had it confirmed she is aspirating and been diagnosed with another chest infection she seems to get them every 6 weeks since last Xmas. The home she is in have been blending any meat and are now blending a lot more of her food as there is a waiting list for the salts team in that area.
I’ve gone along by her side with this illness every problem I’ve tried to find a way around it and to make life easier for her but this one I’m stuck. She made it very clear she does not want a peg feed and it is down on her respect form. Where do we go from here? I don’t know if she understands anymore what this means for her she’s never been one to talk about how she’s feeling so all we can do is guess. What happens to people with psp when their swallowing is giving up more and more but they still want to eat and drink.I hate to think of her hungry and thirsty but on the hand I think she only eats because it’s put in front of her and someone sat beside assisting her she’s pulled a face a few times when it’s time for food and I wonder if she really doesn’t want as much anymore. It’s hard to understand her these days for her to get her point across.
I realise I’ve waffled on with my thoughts abit but this has scared me and don’t know where to turn to
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My husband had PSP and when he started to aspirate when drinking his doctor prescribed Donepezil 10 mg. After just a few doses his eyes lit up like there was a light turned on in his head. His swallowing improved. After a couple years when he started aspirating again his doctor increased the dose of Donepezil to 20 mg. His speech therapist was amazed at his improvement. In the United States on the NIH website under Progressive Supranuclear Palsy it lists that some PSP patients benefit from up to 20 mg of Donepezil. Let her doctor know about the article on the NIH website as a resource. My best to you and your mum.
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,etc.) to drinks (soups, water, Aquarius (*) orange or lemon or similar without gas, etc.) till obtain a sufficient 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, around ½”-3/4” 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!.
David750 point out: “I found with my wife (PSP) the food had to be more and more ultra smooth. Gauging this was difficult- not too runny not too thick. Liquidising food I found I had to be liquidised when hot to get the smoothness required. Any "grittiness" in the food caused choking”
In advanced stages of the disease, feeding the patient is a big problem. The patient is so bent forward and cannot tip his head back or move it, so feeding is now very difficult.
Hi reading your post sounds very much like my own mum who is currently on stage 2 thickener and moody diet. She has the occasional choking fit but as yet hasn’t aspirated.
She also made it clear when she could still communicate she didn’t want a PEG.
Yesterday I had a phonecall from the community matron with her review update telling me mum has lost 11kg since Feb so they are going to try the build up drinks (she use to eat a lot of sweets/choc but that is obv had to stop ) she also mentioned that we need to consider what we all want for the future. She has had a chat with mum but she wouldn’t acknowledge any response to the closed questions she was asking. She asked when her swallowing gets worse wether or not mum would want to continue on her diet knowing there’s a risk of aspiration, if she aspirated would we want her to go into hospital for IV antibiotics or to be kept comfortable at the home and when the time comes would we all prefer her to be cared for at the home she is use to or to be in hospital.
I knew this time would be coming but it’s shook me when it’s been laid out in front of me
It really stops you in your tracks doesn’t it. We had that talk last year, mum asked how long she had left and he couldn’t answer but said it wouldn’t be the 2 yrs she was hoping for she is now nearly a yr and half after that appointment and still struggling on.
It’s the not knowing that gets to me, I work in the care home she is in so I’ve seen the build up with people dying but I’ve never seen someone who can’t physically eat and drink but might still want to. She’s fought this illness for so long and it’s took so much from her sometimes I just want to tell her it’s time to rest now and it’s ok to do that but her determination and stubbornness is keeping her with us
Ask your doctor for some atropine eye drops they dry up the Sylvia a couple of drops under the tongue about 30 /40 mins before meals they worked for my husband couldn’t have managed without them
I asked a couple of times before I got them persevere it’s quality of life now isn’t it
when you say soft and moist diet do you mean what’s called minced and moist? If so that still needs a level of swallowing coordination, and I think bits get stored in the mouth and don’t get swallowed properly. My mum is on this diet and struggles with the thickness of puréed food but copes much better with soup (obviously not thin soups) fed carefully to her with a small teaspoon.
Yes that’s what it’s called. It takes a long time for her to swallow her food but then you have the problem of her trying to put more in too soon. The carers sit next to her to slow her down.
The SALT noted it can take mum up to 19 seconds to swallow, so nothing can be rushed. She also acknowledged that we’ve reached the end of road as far as modifications go, so it’s just a case of reducing risk as much as possible.
I’m finding this stage tricky. Communication is getting harder, yet my mum is still there . It’s all recorded that she doesn’t want interventions so I’m hoping that one day she will indicate ‘no more’. She knows this is an option but isn’t choosing it yet. I both want the struggle to be over for her and also admire her strength to go on.
Sending solidarity and a big hug to everyone on herexx
No advice but my Mum has also said she doesn’t want a peg, “the illnesses is awful as it is, so if there’s no cure or betterment for me I don’t want it. I also don’t want to go to hospital”
The hospice and dietitian told her what would happen should her swallow go fully and she didn’t change her mind.
Her swallow is starting to get worse, coughing after drinking, the SALT are coming back but I know she won’t want thickener and blending - so it’s a risk.
It really is I work in care and can honestly say this is the one of the cruellest I’ve seen.My mum has level 3 thickener she refuses hot drinks with it in, at the minute she is only drinking milkshakes but at least it’s something. Food wise the care home blend a lot of it and things she likes, even peaches she won’t eat because it’s blended I think once everything in her plate is purée she will quit eating.
My mother’s eating/swallowing problems were getting worse because her tongue stopped moving as it should. She restabilized after we switched to fully puréed foods and thicker liquids (a year ago). It’s an adjustment, but you can purée a lot of foods and have them be palatable. If the food is still gritty or grainy after pureeing, sometimes a tiny bit of thickener helps it gel together better. She can’t move or communicate and is spoon fed. She has still lost weight—20 lbs over the past year—but her swallowing has been stable.
Our plan is also no PEG and no IV antibiotics. As long as she can and will swallow, we will offer her food and drink but not push beyond her comfort/energy level. If a time comes when she can no longer manage swallowing, or decides not to swallow, we will stop, and ‘feed’ her with other comforts—keeping her company, talking to her, providing loving touch, playing music, and controlling pain/discomfort (as directed by hospice) if needed. I know I will need the hospice folks for support and that it will be harder than it sounds. But I know she is prepared and not anxious, and has been waiting for years for her time to come. We had those conversations several years ago. The body adapts remarkably well to slow changes. She might still endure for quite a while and possibly be able to eat and drink to the very end.
It’s so sad to watch them go through this. My mum has mostly puréed food now anything that’s not is soft and can break up very small. The care home she is in try to make it look as nice as poss because she refuses to eat it. Drinks with thickener in she has also started to refuse but there is no way she can have without she will only drink milkshake at the minute
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