My mother has advance PSP. She only weighs 48 kilos and is having great difficulties in swallowing anything. Two nights ago the nursing home called the ambulance at 8.00pm at night as the staff were feeding her in bed and she aspirated .
She needed suction and oxygen. She was so frightened and so were we her family and staff.
Two days later and I am still trying to get the pictures out of my head.
My question today is do any of you wonderful supportive people have any suggestion on how we can give mum her medication when she chokes when trying to swallow it. ( and when the tablets are crushed they must taste terrible.)
Any recommendation would be greatly received, as we continue to do the best for mum with limited professional help.
We just want her to be comfortable and not frightened .
Thanks to all you on this journey together.
Goroos (Australia)
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Goroos
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Hi my husband was starting to have a problem with swallowing his tablets and any liquid , I have found a great product called ThickenUp clear by Nestle, it is granules that you put into tea, coffee, wine ,water ect you can mix it as thick or thin as you need , it has no taste and now my husband is not chocking when he takes his tablets or drinks any liquid hot or cold, for example in a cup of tea I now put in a quarter scoop,and I will be able to thicken more when needed, also Probiotic youghurt the drinking one is good ,I only use the natural one, which is also good for the digestive system and gut health. Hope this may be of some help, Blessings Pamela
Thanks Pamela for replying to my post. The nursing home puts all of mums meds in a thickened substance. She is struggling so much and losing so much weight. Feeding a PSP sufferer in bed is very dangerous.
My husband now has a peg for all feeding and meds, he lost 4 stone, but is now back up and his skin is much improved, I used to crush the meds in yogurt,and that works, good luck 🥰
The nursing home staff should know how to crush her pills and use applesauce or pudding. Then the hospice team knows when it’s time to thicken her food and purée it. You should not be responsible for those things.
There are some chemist that willCombine the medications into a liquid form
Try and find one in your area
Also Speach therapist are brilliant with swallowing problems if you haven’t already get your husband to see one possible come to the home good luck with it all
Had the same problems with Mum. We reviewed her meds with her Dr and reduced them to absolute minimum due to the stress they were causing. We took the view that heart meds weren't essential (a heart attack potentially being a quick easier way to go than the long drawn out progress of PSP). The GP then arranged for the hospital pharmacist to talk to us about the different formats medicines came in and we were able to choose the most appropriate. You may need to push for some of these as the more suitable forms can be more expensive and also less stable, so may have to be collected weekly.It was definitely a worth while process and reduced stress levels for Mum, myself and carers without any apparent ill effects of missing out on meds. Mum died peacefully after her swallow stopped completely.
Thanks for your reply. When we meet with GP tomorrow hopefully we can reduce mums meds. She also hates the taste when they are crushed, which also makes it hard to swallow.
PSP medication is now available as a daily patch called Neupro. There is also a dispersible tablet called Madopar that is better than crushing a tablet.
A travel sickness patch called Scopoderm will stop coughing on saliva to give more energy for swallowing.
Speech and language therapist will adjust food thicker to prevent choking then thinner again once mouth muscles stop performing.
Hi Goroos, I really feel for you with these difficulties. I am in the UK, my first posting here after losing my wife to PSP. I would call in a Speech & Language Therapist and a Dietician.Medications crushed are gritty and as you say bitter, both make swallowing difficult. The same medications in liquid form will have a strong taste to overcome the bitterness which can be equally difficult to swallow as my wife could not take liquid paracetamol preferring the caplets, whole, in milk. The key is to have as smooth a liquid as possible and I found full cream milk (neural ph) the best medium, thickened - when thickening milk add the thickener at least 15 minutes before administering (in our case the thickener was Nutilis we obtained on prescription). FULL cream milk is best, as a PSP patient in latter stages must have the highest nutritive value possible in what they drink - as you have found weight loss is a problem; in latter stages it is a question of reducing rate of weight loss rather than gaining. They won’t swallow enough.
In her latter stages I liquidised all feeds and found I had to re-liquidise, when hot, to achieve the smoothness required. Liquidised meat and potatoes tended to have a powdery feel in the mouth and caught my wife’s throat. She would tend to hold food in her mouth as she thought about swallowing and in the process there was some separation. The Dietician prescribed a fortified food called Fresubin when daily intake of other foods reduced.
Ultimately I had to move to THICK soups (as thin soups were difficult to thicken) to liquidise, adding full cream milk to achieve the correct consistency for swallowing, not too thick and not too thin - it took some doing as her abilities were always changing. I don’t think a Residential Home can cope with the close attention required, which is why I had my wife at home until she passed away. There is a lot more I can say but enough for now, I hope his helps.
Can you ask the pharmacist to see which meds may be able to be prescribed in liquid form, Mum's SLT advised us that quite a few of them can be.
I know what you mean about tasting awful crushed in food. As a girl, my Mum would crush up soluble aspirin in strawberry jam for me when I had a headache. Even now I hesitate to lick the jam spoon! Good luck.
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I feel so useless
CBD and Seizures
Maureen Hurst
mum was told august this year she has psp
So Hospice begins
