Hello, I haven’t posted here for some time but now have a problem I’m finding very hard to cope with. My mum, who’s 96, has had her Parkinson’s diagnosis for about 5 years although my view is that she had it years before that.
Anyway, she has deteriorated recently in a number of ways which are difficult in themselves to cope with, but in particular the range of food/drink consistencies she’s able to swallow safely has reduced dramatically in recent days. She’s just out of hospital yesterday following an aspiration episode and has had all the usual assessments by SALTs, OTs etc, who have advised that we should continue her regime of Stage II thickened drinks and wet pureed food. Nothing else to be done. She seems to be managing anything of yoghurt/baby food consistency, but fluid swallow is really not working. I don’t currently feel able to research what to expect next, but guess that this is an end stage syptom. I can’t imagine that she will be out of hospital long like this and there will be a limit to the number of times they’ll treat her with antibiotics. I’m going to find it very hard to let go, this has been a monumental battle, although I know it’s one that’s probably common with this disease.
I appreciate this might be something that’s better tackled off the Forum, but with the weekend coming up, I’m feeling very lost. I can’t get enough fluid into her unless there’s a way of making it more “solid”. Does anyone have any experience of this, please? If I make Ensure into a mousse, is it still a “drink” once the person swallows it? Is jelly? I do realise this is clutching at straws and hospital staff all but said not to bother. But she’s fought this horrible illness so valiantly - and how can anyone just watch a parent choking?
Sorry if this all sounds a bit dramatic, but neither of us is a quitter and I’m not sure how to tackle this until maybe I can get some help after the weekend.
Hi Carol so sorry to hear about your mother Don, t know if this helps but mam and me went through exactly the same thing with my dad 18 Bbb onths ago sadly he didn’t come through I won, t lie it was really hard to take as we cared for him 24/7 for 4yrs after he broke his hip all I can say is do your best and try to hang on to all good memories and banish all the bad I found it so hard as I had been diagnosed with pd 5yrs ago and kept it from him all I can say is Don, t be afraid to fight for what you feel is what your mother would want please keep me updated and I, m here if you want to chat anytime
Pete
Don’t know if you have power of attorney for your mam, s health but if you do Don, t be afraid to use it and remember that you can only do your best good luck and look after yourself otherwise it will be even harder
Pete
Ho Carole, I’ve had PD now for over six years , and the last twelve months I’ve been getting worse swallowing my food , I now have more soups ,homemade or bought , with lots of wholemeal bread , to make sure I get all my body needs I also have a packet of Meritine , soup , and cannot swallow it without a drink of water at every meal , I’ve now started to loose my voice halfway through a conversation , embarrassing in a shop , so have got to take pen and paper , have got a appointment with hospital in two weeks to discuss situation , if any possible solution to your needs will get back to you , you are in my prayers , x
Thanks so much for your reply, and sorry it’s taken a while to respond. It’s a difficult thing to deal with, and hard for us carers to watch, not knowing how to help. It seems like my mum’s fluid intake has reduced dramatically since the last hospital admission - she has thickened drinks but is still struggling with fluids. Maybe I should try and get some advice from a dietician, about how to incorporate more liquid into food…
We are going through this with my dad at the moment.
His swallow is severely compromised and has been for a long time.
The fact that your mum is getting thickened drinks means that she is still getting fluids but in a different form from a regular cup of tea or glass of water. Don’t worry about that.
The reason for thickening is to slow the fluid down in the mouth so the tongue + muscles have time to manipulate and swallow. If you try giving a regular drink of water, it just rushes so fast to the back of the throat that the muscles can’t keep up hence leading to choking. So you need to avoid that.
To demonstrate this better imagine pouring a pot of yoghurt onto a table – it will slowly spill and move around. You will have more time to reach for tissues to mop up etc. Now imagine pouring a glass of water onto the table – it will move around and spill very quickly all over the place and be on the floor in milliseconds.
In Parkinson’s the muscles move slower and we have to work with that so providing thickened fluids still means they are getting fluids just in a different form.
Another example is ice cream which is actually a bad consistency to give somebody with swallowing difficulties because although it looks solid/soft when it melts on the tongue it becomes a very fast moving liquid leading to choking episodes. I know this from experience.
Mum has been having Stage 2 thickened drinks for the past 5 years, what’s different now is that she is struggling to swallow the thickened drinks, getting barely 300ml fluid a day in drink form over the last couple of days. I am trying to incorporate more fluid into her puree food, but of course that means she fills up quicker. SALTs generally don’t advise going any thicker than Stage 2 but it seems like she really can’t manage unless everything is baby food consistency, drinks included.
Hospital doctor, who I’ve dealt with before, generally takes a pessimistic approach and more or less said (again), there’s nothing you can do, just accept it. She also said that at an admission some years ago, so I don’t necessarily buy it, but things do seem more of a challenge now.
Sounds like we’re in a similar situation. Our doctor has said more or less the same. We’re thickening fluids to stage 3 consistency and giving them with a spoon.
You might want to look up the Frazier Water Protocol. It allows the use of free water (unthickened) given either by teaspoon or in the form of small ice chips under the premise that even if it goes down the wrong way the body should still be able to absorb water. Also, ice chips are a good stimulant for the swallow as cold things can stimulate a better swallow.
Perhaps you could try that in between meals for that bit of extra fluid you’re looking for.
Good luck with everything.
Roz
Thanks, Roz. I spoke to a Parkinson’s UK nurse tonight who suggested trying jelly (although other sources warn that jelly can melt to a fluid consistency unexpectedly in the person’s mouth). But mum has been OK with jelly in the past, so I’ll give it a go.
I haven’t seen the Frazier Water Protocol, so I’ll look that up - thanks again.
I found a POA absolutely useless when a doctor, not a neurologist, increased my OH’s meds, actually almost doubled them, within 24 hours of admission to hospital. This resulted in hallucinations and more debilitating side effects…Unfortunately this doctor completely ignored the POA despite my OH having being diagnosed with dementia by the memory clinic years earlier; He reckoned that my OH, ‘had full capacity,’ and that I was just being difficult, (as I read in hospital notes). When we both drew up POA’s for each other, we thought that we could make decisions on behalf of each other. Apparently it is the doctor who has the ultimate decision on anything once someone is in hospital.IMO, a POA is not worth the paper that it is written on if it can be over ridden in this way!!!
