Excessive salivary secretion - end stage MS

Caring for someone with MS
1

Hello,

I have just joined this forum in the hope that somebody may be able to offer some advice. My aunt has had multiple sclerosis since she was 18 and is now 71. She has been in residential care for some years (she has almost no voluntary movement now and is entirely dependant upon her carers), but recently spent a lot of time in hospital due to some chest infections. These were caused by progressive swallowing dysfunction and ultimately she decided to have a PEG tube placed (so that she could be fed and hydrated directly into her stomach, bypassing her mouth). There were some initial problems with her inability to deal with saliva production, but she was eventually placed on a system of having 2 hyoscine patches applied to her neck at any time, which has helped to control saliva since then. Up until recently, she had been quite comfortable this way.

She was moved to a nursing home then and has spent a couple of months there quite comfortably, but during the past week or so, the salivary secretions have become unmanageable again. It is very frightening for her to feel these secretions building up at the back of her throat, and be unable to cough them up, move them to the front of her mouth to spit out, or swallow them. The medical staff have set up a syringe system which regularly delivers a dose of another drug to her - this is partially under her bedsheet and I assume it delivers the medication directly into her PEG tube, but I’m not sure. I also don’t know which drug this is, but the fact is, the secretions are still not being adequately controlled.

I am under no illusions and realise that the end of her life is probably quite near now. I have no wish to try to artificially prolong life, especially when the quality is not good, but I would like to improve her quality of life in any way possible and reduce her fear of choking. She does not have the mobilty to press a call button, even if it is left in her hand, and I know that she is terrified of choking to death.

Does anybody have any experience of this and any advice to offer? I don’t think my aunt’s doctors are particularly use to coping with MS patients, as her nursing home is primarily one for elderly people and I think she is the only resident with MS. I am a veterinary surgeon and so have some medical knowledge - I have tried to search for advice on the internet and heard a lot about botulinum toxin injections into salivary glands as being a fairly successful treatment to reduce secretions, but not much advice about how widely this is available and where to seek further advice. Has anybody had any experience with this moethod of treatment?

I will be most grateful to anybody who is able to help. Thank you.

2

Hi, mmm what a worry this is for your aunt and you. Are you noted as her next of kin? I ask because if you are, then perhaps you could have a word with her doctor, eh?

You have some medical knowledge, as you say, so it may be easier for you than most, to ask more in delpth questions regarding your aunt`s medication.

Then you could also air your concerns on her swallowing problems. tell them you know she is aware of what is happening and is frightened.

It is so sad that her life has come to this, but she is lucky to have such a caring nephew as you.

luv Polllx

3

My wife is at a not dissimilar stage of her MS, in that she is PEG fed/medicated and has also lost upper body tone and any swallow mechanism. She too has bouts of increased salivation. She has been prescribed patches for her neck, but we have not yet needed them. This is linked to her also being prescribed Oxybutinin which if taken via PEG, as opposed to transdermal patches, has the well known side effect of drying up salivary excretion. The Oxybutinin is generally (as far as I am aware) prescribed to avoid bladder spasms. If it is given transdermally it does not have the, often unwelcome, side effect of drying up saliva.

Obviously I have no knowledge of whether this might be a suitable medication in your Aunt’s circumstances, but I wonder if Oxybutinin is of a family of medications with similar side effects whereby one could prove to be beneficial in your Aunts case - obviously the only advice I can offer is to discuss it with an MS specialist - does she have an MS Nurse or other that has a more specialised knowledge than a GP could be expected to have? I say this not to demean the GP, but I am given to understand that most GP’s will only ever see a few patients with MS during their entire life-time as a GP.

Regards.

4

HI

does your aunt have an ms nurse ? if not you could contact her neuro.and ask for her to be allocated one.and you could ask for them to go visit her at the home shes in,and they should be able to get your aunt some treatment, you could just explain the problem to the ms nurse.and tell her she needs some help.it really annoys me that people with late stage ms are just left to suffer,please make sure she gets the attention she clearly needs.you will probably have to to demand it, though.good luck,please keep us informed.

5

Thank you so much for all the comments and advice. I went to visit my aunt again today and the secretions seem to have dried up again a bit for now - as you say Butcher_Boy, they do seem to wax and wane. It’s useful to hear the name of an extra medication to mention though, if things get bad again (which I expect will happen). Of course I don’t know either whether it would be suitable, but at least I could mention it and see whether it’s an option. (I found out today that the one she has via syringe is glycopyrronium).

Butcher_Boy and jaki - the advice about an MS nurse is really helpful. I’m not sure if she has one currently - she may well have done when she was in residential care, because she was doing quite well then and I wouldn’t particularly have heard about whether an MS nurse was visiting or not. But I haven’t heard anything about one when she was in hospital or now that she’s in the nursing home, and it seems that she really does need one. I didn’t realise that specialist MS nurses existed, so I will definitely get on the case with that. Poll, I’m not the next of kin - that’s my aunt’s daughter but she keeps her distance for some reason and only manages to visit about once a month (she only lives about 45 minutes away, closer than me)! My mum may also be classed as next of kin though (they are sisters), and she is usually the person that liases with the nursing home, so I’ll discuss all this with her.

A new issue has cropped up today also - I offered to clean her mouth for her (as I often do, because she accumulates bits of dead tissue on the roof of her mouth as a result of not eating/drinking orally and having medication to dry her secretions). When I checked the roof of her mouth today, there was a huge chunk of dead tissue starting to slough off but still too well-attached to remove, which must feel really unpleasant. I spoke to the home manager about it and she said that they only tend to do the “oral care” to make my aunt feel better psychologically, and that it isn’t really needed otherwise. I know this to be wrong as when it lasped in hospital once, her mouth was full of dead tissue and was very uncomfortable. I wonder if the dead tissue in her mouth has now been caused by poor attention to oral care? I don’t want to be too critical of the home as I think they are very caring in general but perhaps just inexperience with MS, so I’m really pleased with your suggestions to track down an MS nurse who can hopefully supervise all these needs.

Thanks again everyone, and I’ll keep you posted.

P.S. Poll, I’m actually her niece(!) but I realise this isn’t obvious from my username! XX

6

Hi Everyone,

I just wanted to give you all an update, seeing as you were kind enough to give me some advice, and also in case my experiences can help someone else who is searching this forum for similar advice.

I also received a helpful email from the MS trust, who advised (as some of you did) to find the local MS nurse and also to speak to the local palliative care team. They also provided a useful factsheet on problems with excess saliva in patients with Motor Neurone Disease, which is treated in a similar way to MS patients. The link is here, should anybody need it:

http://www.mndassociation.org/Resources/MNDA/Life%20with%20MND/Information%20Sheet%20P3%20-%20Saliva%20Control.pdf

On the basis of everyone’s advice, my mother got in touch with the palliative care team who immediately 'phoned the nursing home and advised them to change various medications - there was an immediate improvement in my aunt’s problems with secretions. The palliative nurse has since been visiting every few days (I believe she has been in discussion with the local MS nurse also) and assessing my aunt and making recommendations, and it has been great to have her involved.

Unfortunately, my aunt’s condition has started to deteriorate fairly rapidly in the past week. Her pain medication has had to be increased, and there are certain unwelcome side effects from this. The palliative team have started her on the “end of life” pathway, meaning they have stopped tube feeds now, and are just giving fluids via the PEG. Another reason for this is apparently that the tissue on her legs is starting to break down in some way now which will ultimately cause further pain. I had a lovely visit with my aunt on Saturday, during which I was able to tell her all the things I felt I needed her to know in case I didn’t get another chance (including the fact that I am expecting a second baby - this is generally a secret from my family until we have the scan and know that all is well, but I didn’t want to risk missing my chance to tell my aunt. She was thrilled, and my mother couldn’t understand why my aunt talked about babies a lot during her visit later that day! I’ll explain to her in a few weeks). But since Saturday, she has become more confused, and is having some unpleasant hallucinations about a man in her room. She also talks constantly (even during the night, when she is alone, according to care staff), which is exhausting for her and means that her speech muscles are so tired that we can’t understand what she is saying most of the time, just the odd word. During my visit today, it was very difficult to communicate with her and it bothered me that she seemed so worried about these hallucinations.

The palliative care nurse is visiting again tomorrow, and my mother will discuss the hallucinations and constant talking with her to see if the medication can be adjusted to make her more contented and comfortable.

I hope this email isn’t too depressing to read. I do feel sad that we’ve got to this stage, but things are what they are and her quality of life has deteriorated so much that I believe the “end of life” pathway is the right thing to do now so as not to prolong suffering. But I’m so grateful for the suggestions everybody made - I think having the palliative care team involved has made a huge difference and I don’t know whether the nursing home would have got them involved eventually or not. I would definitely recommend that anyone in a similar position finds their local team.

Good luck to eveyone else on this forum

Alex

7

Oh Alex, what a touching and emotional message. I dont know how long it took you to do it, but it must`ve been difficult and painful for you.

the info about your aunt`s mouth roof…how awful of the care home to let it get so bad for your aunt, that you felt it necessary to clean it and then let the staff know.

I do hope your aunt isnt sufferring now, even tho` it sounds like the end is close for her.

it will be a blessing when she is, at last, at rest.

Bless you for the wonderful care and love you have shown her. And take care, especially now that you have a precious little person growing inside you. Might you name the baby after your aunt, if it is a girl? not my businees I know, but a nice thought, eh?

much love Pollyxx

8

Hi Polly,

Thanks for the lovely message. It was actually really helpful to use this forum, partly as an outlet to make myself feel better, and partly because I ws given such useful information by everyone. My aunt died about 3 weeks ago now (5 days after my last message), and although I miss her a lot, it was the right time. My mother was with her at the end, holding her hand and talking to her, and she said it was very peaceful - she was breathing in a very shallow way, and the gaps between breaths got longer and longer until she just stopped. I’m so glad she wasn’t alone.

I do just want to say that the care home staff were in general, very caring. It was just the home manager that I felt was trying to brush aside my concerns, and I don’t believe she is actually medically trained. I think the problem was just that they didn’t know how to manage patients with severe MS (and PEG tubes), so I’m so glad this forum suggested we find the palliative care team - that was invaluable.

We gave my aunt a lovely send off - a full Catholic church service (her faith was very important to her), and then a crematorium service at which I somehow managed to hold it together enough to read “I wandered lonely as a cloud” by Wordsworth, which I had read to her several times recently. During the priest’s eulogy, he actually said that my aunt had once said that she thought having MS had made her a better person - she was so positive and upbeat all the time - I have learnt a lot from her. Your suggestion about the baby name is spot-on - the day when I told my aunt about the baby, I also told her that if it is a girl, one of her names will be my aunt’s.

Finally, I want something good to come of my recent experiences, so I have an interview on Monday with my local branch of the MS Society to see if I can help out in some way as a volunteer (despite the young family!). Even if it’s just occasional, I want to take part somehow, and then commit more regularly when my children are a little more independent.

Thanks again to everyone and take care xxxx

9

so very sorry for your loss,your aunt was lucky to have had such a caring niece,shes at peace now,where nothing else will ever hurt her.good luck with the new baby too.

kind regards

jaki xx

10

Thank you xx

11

So sorry to hear about your Aunt. She had a long life to live with MS and she sounds like she lived it very well, with dignity and in an upbeat manner. What a lady.

However, how lucky ius she to have had you. I wish I had a niece like you to visit me. I thank you from the bottom of my heart for the love you have shown your Aunty. Good luck in your future and I hope all goes well with the new baby.

Anne

12

Hi there!

Id just like to add my mum is 57 with this stadge of MS.

Our main problem is her saliva battles. We have been using Hyoscine, Atropine Drops on the tongue and other things and nothing seems to work?!

We are now entering a real danger zone as her secreations are thick every single day now and she has had so many bouts of Pneumonia that we are worried about the next chest infection.

Has anybody had any experience with this Botox into the saliver glands or radio therapy on them?

13

I didnt read the last few messages… i feel so awful.

I am so so sorry for your loss, but thank goodness she is no longer suffering. I cant bare to watch my mum how she is anymore, its heart breaking.

Lots of Love xxx

14

Hi Emspence24,

I’m sorry to hear that your mum is struggling with oral secretions too. It really is so frightening for both the patient and their relatives. I’m assuming you’ve seen the link to the advice for Motor Neurone Disease sufferers with similar issues that I put in one of the posts above?

Of course you can find out as much as you can, but ultimately, you need to find the health professionals with the correct knowledge and experience to help you put it all into practice. Does your mum have an MS specialist or nurse looking after her? Have you discussed your concerns with them? Is a palliative care team involved at the moment? Is your mum being cared for at home or somewhere else?

Sorry for all the questions but I would like to try to help if I can, based on some of the information I found when trying to help my aunt. I don’t obviously have any experience of the botulinum injections or radiotherapy but I understand that some areas of the country/some specialists offer it, and others do not so I think you need to liase with the MS team to find this out.

Alex

15

Hi Alex,

My name is Emily. I just wrote a huge paragraph and its dissappeared!!!

Lovely to speak with somebody who understands this stadge of MS!

My mum is cared for at home, by mainly my dad, me and my sister.She is what we live for. We are a very close family. We have the help of carers when we are at work in the day and us at night. Its very very hard. Thank goodness my dad is in the position at the moment where we can afford private healthcare and we are looked after by a neuroligist and an amazing luncg specialist who looks after her when we suffer from the bouts of Pneumonia. The hospital we attend is just amazing and they no her so well. They have saved her life many a time and i strongly believe if we had gone down the NHS route my mum would still not be here!!!

Believe it or not we have not had an MS nurse in the community for 8 years and one has just been appointed and we are meeting with her today! Hopefully she can suggest a few tricks. We are also meeting with a specialist in radiotherapy to the saliva glands on Monday, but i dont think its a route mum really wants to take but worth taking a look at. I contacted the MS Socirty recently and they advised on a couple of drugs we have not tried yet so we have forwarded to our Neuroligist but from what i can see i think botox injections seem the way forward.

At the moment we are coping with intense chest physio 3 times a week, a suction machine and nebulizer when she gets blocked up. My mum is truly amazing, she is such a fighter and loves us all so much, its enough for her to watch us living out lives and has so much to look forward too. She gets to go on lovely holidays, my sister is getting married in August and hopefully im not that far away from marriage too. I need to have my mum at my wedding too.

It has effected us all in so many ways, i have lash backs all the time from 2009 when we almost lost her for the first time and was in intensive care with pneumonia and blood poisioning for 5 months!!

My dad has aged so quickly and is so stressed and i have anxiety and panic at times. My sister has her own issues, she keeos pretty quiet and doesnt help as much as i do. i have alot of resentment toward her for that. But thats her choice.

The help for families is appauling, makes me so angry. My dad is amazing, one of a kind, not any men out ther i know that love their wife as much as he does.

xxxxxx

16

Emily,

My love, you say how brilliant Dad is. I agree. But don’t forget yourself too. I wish I had a daughter like you to care for me. Your Mum must be so grateful and love you so very much.

Please try and find someone you can talk to, to let this all out. You can private message me if you would like to?

I also have PPMS but I am doing ok.

I send you and your family and especially your Mum all my love and I hope that you can remain strong in this very diufficult position.

Anne

x

17

Anne, That is so very sweet of you:-) thank you for your kind words! I’m sorry to hear you have MS too. I wish I had a magic wand! I would love to find somebody around my age that is going through what I am- that would be my dreammmmm! I would feel really bad in loading on you- it is very important for you to remain positive and be around positive things. I am so pleased to hear you are doing ok. Keep positive and I will say a prayer for you, you can always message me too. Xxxxx Lots of Love xxxx

19

Oh love, I do feel for you. You are a wonderful, thoughtful daughter to your dad.

I am sickened to read he suffered abuse and neglect in the home. It is wicked that this went on. Sadly it is happening too often.

I believe you would both benefit from a care assessment from social services. Sadly it does take a long time to get it, but could your dad afford to employ some private carers? It would help you out in a way I think would be beneficial.

If your dad is over 65, you could apply for Attendance Allowance for him. This would pay for carers.

Your young daughters are probably missing your attention and so having carers would free some of your time for them.

What do you think?

Boudsx