My mum struggling with secretions/mucous

[lorri66]

Hi
My mum has bulbar inset MND (unofficially for 3 yrs but officially for 2), Last summer was a big turning point in that she had to have a RIG fitted quite urgently as was losing weight and not being able to eat properly. she had point blank refused to have it any earlier as gets so anxious and nervous about procedures.
She can no longer speak or eat anything. She is still mobile and lives alone but we are getting to the point that she wants us there all the time.
She has a NIPPV, cough assist, nebuliser & suction but the last few weeks getting onto of the mucous situation is hard. She has carbosistine & glycopyrronium and atrovent & atropine.

Yesterday was just a continuous round of using all machines and she was worn out and is weak and felt her breathing was hard, SATS 95.She hates the cough assist but did use yesterday, her cough is very weak. she also doesn't like the ventilator that much because of saliva collecting in the mask.
my sister was with her most of the day. there 3 of us so all take turns in spending time with mum everyday.
she gets very anxious and has been all week since having the covid vaccine and horrid side effects from it.
we rang the hospice who couldn't advise anymore than we were doing.
its so draining for her and us, has anyone got any ideas what else to do when its like this? Is this getting near the end?
I feel for her so much as there is no hope.
thanks for reading

[jd58]

There is thread on saliva that may help

[Bowler]

Hi Lorri.
This is so distressing and I feel for all of you. There are many more people on here who are better placed than me to offer advice on equipment and drugs. I too cared for my wife and would say if your mother has not had a physical visit from the hospice nurse or a mnd specialist nurse within the last few days then I would be on the phone today asking for an urgent visit. They are the best placed people to advise you on where things stand. Please don’t think you have to do this on your own. If necessary insist on a visit.

[matthew55]

I had radiotherapy and it worked to rid me of excess saliva. Is this a viable option for your mum? 👍x

[GaryM]

Hi lorri66 and welcome to the forum. I'm no expert, but wouldn't your mother be eligible for NHS continuing healthcare?

[Ellie]

Welcome to the Forum lorri66 Sorry your mum is in such distress with her secretions which, by default, is distressing you and your siblings.

I also think your mum should be seen in-person - would the hospice/palliative care nurse not visit? Her lungs should be checked out/listened to for signs of infection. She may need a reassessment of her meds, neb use, cough assist regime and settings, which is probably the Clinic's responsibility?? A video call on this would be enough.

Even though your mum doesn't like the cough machine, it does work best if used a few times per day, every day, and not just when the mucus gets problematic - the more she uses it, the more she will tolerate it and the greater its benefit, although her getting to that point might be unpleasant for her... Also, as I said, it's important too to have a review of the settings - maybe it was her physio who set it up?

Getting lots of water is good too and pineapple juice helps thin mucus but can make saliva worse 🙄 so probably best avoided before bed.

I do think she should be seen, as a priority, by a nurse and/or her clinic, and her meds and machine use be reviewed. I agree with Gary re a CHC application.

Sending you all a big hug.

Love Ellie.

[lorri66]

Thank you all

she does get visits from the hospice but more talking supportive.
We only have MND dietitian who is a good support & tries to help.
the respiratory physio’s haven’t seen mum for a couple of months & not doing home visits again because of Covid-19 & lockdown. My mum wont go in! She says to a lot of stuff.

the hospice doctor rang today and has offered mum a bed in a few days so she can be assessed more & helped with cough assist. My mum going to think about it. She wont want to leave her home i doubt but it would be good for me and sisters.

its so hard as there is no hope, she feels like giving in even though she still has all limb use (arms weaker) and lives mainly independent with our help on some things.

[matthew55]

I will be honest and say that for me the biggest decision of my life will come when I am close to loosing both of my hands. Although it probably won't get that far with what I got. 😊x

[Ellie]

Oh Lorri I really hope your Mum accepts the bed in the hospice - it could be her chance to get her meds right, give her a better outlook on life and their physio might look at how she uses the machines.

Fingers crossed.

Love Ellie.

[Banned]

Please be aware that mucus secretions can be deadly, as a mucus plug may form in the throat.

Your mum URGENTLY needs a care package paid for by society. You may need to fight those who think 'Society doesn't exist.'.

[lorri66]

The hospice doctor and nurse are visiting next week, she also has a respiratory appointment but doesn't want to go as they cant cure her and she really doesn't want to if things like carbon dioxide has gone up or bicarb levels up too. We have said to her they need to check the ventilator settings etc so she has reluctantly agreed.
She is definitely calmer this week but has started on a lorazepam each day, half morning and half before bed as she says wants good sleep.
The mucous is just the bane of her life, the only thing she likes using is the nebuliser.

She has lost a bit of weight too but she is blaming anxiety and the soya food but this has same calories as the normal food so I'm not sure. My sister convinced her to try non dairy in the hope it might help the secretions.

Graham what does the care package consist of please?

[Bowler]

That’s really good news and a giant leap forward. Well done you and we’ll done mum

[matthew55]

Pineapple juice really does help decrease flem. Milk encourages but I like a little bit in my daily coffee. 😁x

[GaryM]

Pineapple juice really does help decrease flem. Milk encourages but I like a little bit in my daily coffee. 😁x

As the Ensure drinks are based on milk (I think) don't they create mucus? I'm sure Ellie will tell us.

[matthew55]

Have you seen what ensure does out of the bottle? Hardens to something like steel and coats the washing up sink in blotches. What it does inside us the good lord only knows. 😁x