Aspirated and in hospital with CBD

[broadie79]

Hi all, looking for advice please. Mum is in hospital being treated for aspiration pneumonia after a chocking episode in her nursing home where suction had to be used. Her swallow is beginning to deteriorate but we don’t want her to suffer. She’s nil by mouth and doctor has introduced buscapan to reduce secretions.

She has a softer diet and SALT have assessed to say thin liquids and mashed and minced food. I think she is approaching the latter stage of the horrible condition. How do we plan for future aspiration episodes.. is hospital admission the best/only option? I’m trying to be strong but it’s an emotional rollercoaster in and out of hospital and I have little support nearby. Any advice gratefully received x

[LuisRodicioRodicio]

Hi broadie79!

I'm sorry CBD has entered your family.

Despite having an effective, efficient and gentle GP, the necessary scheduling of visits to his office or to the emergency hospital, the necessary displacement, always complicated, the "roller coaster" of more or less banal symptoms that PSP generates, many of them unforeseen and repetitive, led us to a certain experience that, together with the possibility of consulting by telephone with some medical friends and family at any time, allowed us to alleviate the symptoms quickly until hours or days later we could consult with our GP.

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

These kind of diseases manifests they self in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the support of a GP and the "trial and error" method, you could achieve a quality of life with interesting moments despite everything.

I am not a physician.

During the 8,5 years in which we was living with PSP I have been collecting our own experiences, symptoms and solutions and that of other members of the chat to offer some notes as a suggestion to PSP/CBD patients and caregivers. The mentioned notes are made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers

Wishing the best for you and your family Iam sending those notes-document with our experiences and our informations by the private mail of this chat.

Hug and luck.

Luis

Note.-The aforementioned documents include some photographs in "jpeg" or "Excel" charts that the PSPA private chat does not support and are canceled in the copy that I include in the private chat. In that case, if of interest (pictograms and communication boxes, the description of symptoms of the different types of PSP et cetera) the only solution is to send it by email to a "gmail" or similar email address. If you are interested and to avoid unnecessarily spreading your email, I suggest you use the internal "chat" channel of this website.

[David750]

Broadie79, I remember my wife at this stage, a very difficult time. I liquidised her food. This helped but it had to be of a certain consistency which always changed. If thinning required I used full cream milk. When she started choking on this I tasted it to find a powdery feel to my tongue (meat and potaotes particular contributors) which was the cause of her choking. I overcame this by double liquidising, the second time when hot - this made it much smoother. I had mugs large enough to accept the head of the liquidiser, so was able to heat in the microwave. Hope this helps. Very difficult to relate the best method, as has been stated by others, changes are constant. The dietitian we had prescribed Fresubin, a concentrated food supplement to maintain nutrient intake when overall food intake dropped. Latterly feeding times extended to 1.5 hours for 200mls as my wife held the food in her mouth as she concentrated on swallowing often failing to hold in with her lips. Coordination very hard for her.

[broadie79 in reply to David750]

Thanks for your reply David. Changes to her diet are being made and precautions with risk feeding followed. Hopefully she will pull through this infection, not helped by also having Covid x

[David750 in reply to broadie79]

Not an easy time at all for you Broadie79. So much is trial an error with the progression. I do hope changes help. Essential you have a Dietician involved, accessed through your GP. Best wishes 🙏

[ep12345]

hi broadie79

Sorry to hear you are going through this. My mum is officially 4 years diagnosed with PSP and is in the latter stages. Around 2 years ago she was admitted to hospital with aspirational pneumonia and was fitted with a PEG at the time as she was so underweight due to struggling to eat.

Since then she has had two more admittances, one in October 21 and then just recently in September. She was on antibiotics this time for 19 days (previous admittance on antibiotics for 9 days) and each time the doctors talked to me about stopping treatment and end of life care etc. we pushed through as that’s what my mum wanted. She was in hospital for around 6 weeks on and off this time (discharged for a week and then readmitted as the hospital discharged prematurely) but since she has been out she has been waking with support and talking. You wouldn’t think she was at the end of life according to doctors to look at her now.

Sorry, not sure if this helps any but I just wanted to reassure that yes AP is common with this disease and I feel that the doctors are quick to look at the condition and quality of life with the disease but I always say that as long as my mum is wanting to fight to be here then we will be her voice. We fully understand that at some point in the future the antibiotics won’t work but until then we take each day as it comes.

I know the PEG is a tough decision and not for everyone but I do know that it has kept my mum going for this long by giving her the nutrients she needs whilst reducing (not eliminating) the risk of aspirating.

Hope this helps somewhat.

Take care x

[broadie79]

Thanks for taking the time to respond. It is day 5 of her antibiotics today and there has been a slight improvement. Her speech and mobility have deteriorated quickly over 2/3 years and the family do not think the PEG feeding is within her best interest. Trying to do wants right, but difficult decisions to be made. Best wishes to you and your Mum x