PSP Association
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Will one's swallow a summer make?

OMG!! For the second time this year, my mother is refusing to eat by keeping her mouth closed. She did the same thing around three months ago, but at that point we could see her point as she was on solids at the time, which were making her choke quite agonisingly. Now she is on thickened shakes, solid foods being a thing of the past for her.

A nurse from the PSP Society, who was present when my mum was being examined by the neurologist the other day, said that she had never seen anyone with such an advanced case of CBD. And the neurologist added that my mum’s brain scan, taken seven years ago, already showed marked signs of deterioration.

Is she becoming a miracle of science – or a victim of our success in managing conditions, rather than our ability to cure them? I think the latter.

But what I would love to know from people in a similar situation on this site is… does anyone know whether, once lost, the swallow reflex, ever returns? I feel we are now looking towards the end of the road, and am really hoping that she won’t ‘rally’ again, and have to trudge on much longer inside a life that holds so very very few pleasures or opportunities for interaction with others.

Any advice, or just plain support, very welcome. Hard times, indeed, for us all. With universal love to this community and others. Mary

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Mary, this is a very difficult time and one I dreaded. My love's loss of swallowing came and went over 3 weeks or so.

It is different for all but all I can say is be prepared! Make sure she is sitting up and that she is expecting to be fed and not half asleep. Feed in tiny mouthfuls! Make sure the carers are aware that swallowing is very weak.

For my love, sometimes it was better than others, and always better if he was offered jelly or icecream or yoghurt rather than 'proper' food!

He also had periods of nearly 24-hour long sleeps, and during this time his swallowing was poor. Once he was more wakeful, it improved again but only marginally.

His last wakeful phase he was very weak anyway, but he was still taking meds by mouth. Things did not go well.

I asked in the evening if staff could use a suction machine to clear the pocket of unswallowed fluid in his throat. I knew such a machine existed because of this site! Thank you! They were reluctant to use it but did and it made the world of difference to his comfort in the final days!

Take care! You will no doubt spend more time with your mum and know how she is doing. If she refuses food, it could be she has made a decision not to eat any more.

This is heartbreaking and scarey, but normal for some at this stage, and something that has to be accepted. Make sure the carers know!

Give her hugs and tell her you understand. It may be a phase - or it may not. Your mum may be completely different!

Love and big hugs to you and your Mum

Jen xxx

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Dear Jen,

Thank you for this very informative post. I had asked these questions regarding Charles as we are headed down this road. It will help us as it did you.

He is still eating but the jaw pain is incredible.

Cuttercat

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Thanks Jen for the considered and considerate words. I know things are unravelling now but am finding it hard to accept stuff. Hoping to avoid any more suffering for my poor, exhausted parents! All the best to you and your family Mary

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Hi Mary my Mother also has CBD and is in her 7th year. Swallowing is also very difficult for my Mother, along with severe mobility and communication problems, yet she retains cognition. Last month my Mother had a video fluoroscopy test at the hospital for swallowing and we now have a dietician coming round to discuss PEG feeding. I am dreading this visit! Has your Mother had a similar test done? These are indeed hard times, but you are not alone. We are in a similar boat Mary and I am totally with you on your theory of us being victims of successfully managing a truly horrendous condition but feel like we have no choice we have to keep going! Sending you a big hug and hoping we can continue to stay strong,

Martina

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Thanks Martina - sorry you are having a hard time and your reply much appreciated. Mary

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