I come to this group as it offers far more help and advice than many of the medical staff dealing with mum and their limited understanding of PSP
Mum was diagnosed with the illness just after my father passed in 2020 though I feel she already had the symptoms a good 2 years prior to that
Mum is now in a nursing home and myself and sister go in 2/3 times each per week often over meal times to help her with her food.
Yesterday I noticed she was packing things into her mouth but not swallowing and was having problems drinking from the straw which she has been doing for the last year. Her lips didn’t seem to be closing round the straw and it seemed her sucking mechanism had gone? Any she did get she seemed to be holding in her mouth and then it would dribble out p
The home rang me today to say they had noticed the same and she was choking in the sandwiches even thought they are cut up into tiny pieces. They contacted SALT who are coming out tomorrow to do an urgent review - has anyone else experienced similar
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This is a good description of what happens when the muscles involved with chewing and swallowing start weakening. My husband would not be able to eat bread however small you cut it. He’s on softer foods with sauces and gravies added to help them slide down and don’t require chewing. We were advised by SALT not to use a straw if possible as they can’t control how much they take in and sipping from a cup is better. I’d say from researching the subject swallowing difficulties is one of the top symptoms of psp. Also my husband crams food into his mouth before he’s swallowed what was in there and I have to remind him to slow down and swallow. Sometimes he can’t swallow so what’s in his mouth has to come out and often their is saliva as that’s not getting swallowed either. It’s all very sad and distressing to watch. Salt will help with ideas and tips.
yes, we were told to definitely not use a straw as can’t control the amount going in. Mum uses a glass or a ‘sippy cup’ which controls the amount (like toddlers use, with two handles and a drinking spout). She’s also on level 4 food which is puréed. If you search for level 4 food you’ll find lots of info and advice on the different stages of foods to eat as well as ideas for meals.
My mom has had PSP since 2018, but formally diagnosed in 2020. Her swallowing was very similar to yours earlier this year. The assumption was, she wasn't swallowing all or any of her food/liquid because she could no longer feel that anything was still in her mouth. Also, the signals from her brain, when they did get to her mouth muscles, were simply too slow or not strong enough to get the job done. We limped along, mushing up her food, multiple carers and family helping her eat/drink whatever we could -- meal times taking up to 90 mins and not having a lot of success most of the time. She wound up in hospital with kidney failure in April and nearly died. She is now with a PEG tube. This disease is horrible, i'm sorry you are having to endure it as well. Good luck.
Sadly this is a normal progression for PSP. Pureed food and a sippy cup are the way ahead for now but conversations need to be had with your Mum and SALT.
They may suggest a PEG for the future. This has pros and cons and does not completely remove the risk of aspriating. It is something that should be discussed with your Mother sooner rather than later.
My husband was adamant he didn't want one but the SALT persuaded him. Having done further research and discussions with his loved one he reversed his decision and we cancelled the operation. He continued to eat puree food until he gave up a few weeks before he died. He had been diagnosed 4.5 years earlier.
I hope this helps, please take care with your decisions. A PEG will only delay the inevitable and a lot depends on the quality of life the patient has.
We had the discussion about PEG very early on and mum was adamant then when the time came she wouldn’t want one, she has never been one for any intervention and at the minute food is her only pleasure.
She has been reviewed by SALT this am who have moved her to “mushy and minced “ diet and stage 2 drinks - she loves her sweets which means that will have to stop too
Everytime I go to visit she cries as I leave it’s awful to watch - im a nurse but feel so useless in this situation
Hi. A couple of comments; watch her weight, it's not always easy to put if back on, secondly, get her some mouse in her favorite flavour, or make her a pureed desert.
Good point AnneandChris about the PEG not eliminating the risk of aspirating. Yet another cruel aspect to this horrible disease. As the drooling becomes excessive, the PSP patient is more likely to aspirate on that than anything else. And with a PEG tube, drool is the ONLY thing they can aspirate.
it’s interesting how varied the instructions from SALT are! My mum was advised to use a straw but others are being told not to use a straw. You’re being told no jelly or ice cream whereas others of us know (thanks to the famous ice cream challenge on this forum) that ice cream is great as something that can be managed (although my mum doesn’t like it). I conclude that actually al health professionals including SALT don’t know about this disease. If you are looking after someone in their own home I suggest you rely on your instincts about what works well. If like me your loved one is in a nursing home then you can join me in the battle to get what your loved one needs not what random rules of others say.
Thanks for your reply - like you my mum is in a nursing home and always has sandwiches for her tea - I asked what alternative they will offer and got told they wud have to have a think 🤷🏽♀️
I too thought I’ve cream would be fine if not left to melt into liquid but apparently told not.
She apparently can use a straw if she can manage otherwise it’s a cup with a short spout ( which she hates as they have tried it and she can’t tip her head back enough for the drink to come out.
Liquids are being thickened so I’m wondering if that will require a lot more effort to get it up the straw
Mum now uses a cup similar to this at recommendation of SALT. It slips into a handle so she can hold it with two hands. She doesn’t need to tip her head back because of the cut out bit.
Mum is now on level 5 meals. The home buy her meals in so they are the correct consistency. She’s not a big ice cream fan but has developed a sweet tooth. She still enjoys cakes and sponge puddings mixed with cream, yogurt or custard. The home support her wishes that eating should still be enjoyable for her, though in practice I’m more willing to take the risk ie, dipping a biscuit into her coffee. I did draw the line when she randomly said she fancied some popadoms!!!
I would also add that her swallowing deteriorates when she is tired. If I feed her dinner she might only eat a few spoonfuls but they tell me she eats well at breakfast.
PSP affects people differently, if you tongue and mouth muscles start to fail the chewing food and moving it to the back of the mouth to swallow it becomes an issue, some people start to loose the ability to swallow on demand causing drooling but have a strong spontaneous swallow allowing them to eat or drink modified foods; there are also the cognitive changes making a person impulsive etc. SALT will advise dependant on the individuals needs, not the disease.
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
Our solution (which often works but sometimes does not) is as follows:
1) With the fiber-free part of the head of an electric toothbrush, we massage the outside of the jaw and the inside of the mouth to stimulate the muscles that open the mouth. Also, before feeding the patient, give a circular finger massage for 1 minute just at the top of the jaw and under the ears, she can move her jaw better.
2) Place a big napkin under the chin.
3) With the caregiver's left hand, the head is raised and with the right hand the spoon is inserted into the mouth and it is removed empty.
4) The head returns to the position where the chin is close to the chest (in this position it is easier to swallow) so that patient can swallow better.
5) Steps 3 and 4 are repeated as many times as necessary.
6) When feeding with a small spoon is very slow and difficult, we have used a 60 ml syringe, introducing the pureed food between the teeth and the cheek in small doses (10 ml each time).
It is normal for the napkin to get very dirty.
Note.- On the advanced phase in which we are, the patient tends to be frequently drowsy. If he is very sleepy it is useless to feed him. It is preferable that you take something the patient like very much (An ice cream for instance) to entertain the stomach and not force feed. This happens especially at dinner and in the morning our patient eat breakfast very well (generally the easiest and fastest meal of the day). Lunch is usually quite acceptable too.
Feeding thier loved ones they they sometimes will cough, sneeze and nose starts running, despite feeding with puree and using a syringe.
Dance 1955 and David 750 suggest the use of an atropine solution that is used as eye drops in ophthalmology. These drops are applied under the tongue of the patient about 15/45 mins before food helps with the secretions.
• Difficulties to Swallow Pills
Ask physician to switch some medications to liquid form.
If no possible:
Honjen43 and Sweenstar suggest: “Put the tablet on a spoon with thick apple sauce, thick yogurt or thick custard. And sometimes an extra spoon of apple sauce, yogurt or custard to help get them down. Just make sure he has swallowed the 1st completely before 2nd given! You will hear a gurgle if not completely swallowed. And that can lead to further problems.”
Sweenstar suggest: “Try a small sip of water just beforehand”
We have not experience, but seems having a PEG fitted does not make the problem go away totally, as he can still choke on saliva.
“Hi Caya” wrote:
“If the PEG tube is appropriate it depends on the patient:
If the patient has a good quality of life, which means they can walk, watch TV, go to the mall, read the news, to friends etc and suddenly lose the ability to eat and drink then could be OK..
But if the PSP is already advanced and they are fast failing, then it's not recommended since it's just prolonging their misery”.
Please to search for "peg tube" on PSPA fórum or others for other people's opinions.
One caregiver wrote: “My dad had one and i would never recommend it for a late stage patient (it wouldn't make their PSP better or improve their cognition etc).”
On 2021-07, Dr. James Rowe points out: A PEG tube does not exclude eating for pleasure: favourite food and drink can be a continuing source of enjoyment and social engagement, while the PEG handles the bulk nutrition.
There are several stages of dietary adjustments that are made along the way as abilities change, from regular food to cut up to small minced and soft or mashed, to increasing levels of food processor mincing, to blenderized smooth purees that need to be a certain consistency — not too thick or thin. (The good news is you can process or blend a wide variety of regular food and not get stuck on smoothies.) Also drinks get increasingly thickened bit by bit, and progress from glass to using a straw or a sippy cup or a glass being held up by the carer to liquids being spoon fed. From regular eating utensils to thicker handled utensils to a bowl and spoon, to spoon feeding by caregiver. When feeding is difficult and taking very long, or frequent coughing/choking happens, it may be time to make a change to the next level (can reconsult SALT for advice) and often things will restabilize.
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Last days with mum
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My Mum ( Mary) x
