SIL just diagnosed with Motor Neurone Disease

[BobDear]

She is 46 with 3 DC :(

She says she doesn't want to talk about it and 'it is what it is'.

Six months ago she had a pain in her leg that she thought was a trapped nerve and today on the phone, she just mentioned that she used a scooter to get round Sainsbury last Saturday. I am horrified at the speed of the decline and want to help but don't know how.

I don't know anyone else with it and have no experience. I know it's usually pretty brutal and there is no cure, but I don't really understand the journey as everything online is mostly talking about life-expectancy. She lives in another part of the country but is coming to stay the night next weekend and I would just like to be better informed as to what to expect and what is a realistic expectation of quality of life for her in the near future.

She is not with DB any more but we have remained friends and I still consider her family - but it does mean I can't ask him about it as he refuses to discuss her or what is happening. I know he will be worrying about DC and he will step up and take her to appointments etc but he won't talk. I don't want to pry or ask her questions but I don't want to hide from an uncomfortable conversation if she wants to have it. Any real life experiences would be much appreciated.

Hello

Yes carers are involved although I am not sure to what extent. SIL is reasonably comfortably off - she had a decently paying job for a big company and they have paid out on some kind of terminally ill pension type thing. She is lucky in that regard. DB is also - I'm sure - paying for stuff.

I saw her a couple of days ago. It's her speech that has declined the most. I can barely understand her. I cannot imagine the frustration and distress of being on that endless decline to death. It's horrific. I want to scream with the unfairness of it all.

@GlassHeart1 it will depend on social services' assessment. It's unlikely to be 24/7 initially but it can be 2 carers if that's what is needed. The assessment is the family's chance to advocate so I would have someone there then if at all possible. As the disease progresses it's likely he'll be entitled to Continuing Care, which will be a separate assessment but tends to cover more hours.
So sorry you're going through this, it's horrific.

@BobDear I'm very late to this so apologies. I have read some of the thread and your updates.

I'm so sorry to read about your SIL; MND is such a difficult and cruel, condition to cope with. DP's sister had this; she was younger than your SIL and also had 3 children. DP's sister had a way of communicating via a computer, as her voice went fairly early on. This really helped everyone, although she didn't bank her own voice so it was more computerised-sounding. She didn't mind this - she just wanted to be able to "talk". She didn't live in this country and sadly I never knew her as she passed away before I knew him, but her husband and carers did everything they could.

She was very depressed initially, but her specialist suggested antidepressants which made all the difference to her. She became involved in campaigns and would go out and about meeting people. In the end she passed away very peacefully in her home.

Some people may find it patronising to be offered antidepressants, but I mentioned them because of the very positive effect it had on DP's sister.

My acquaintance gets continuing health care which I see has been mentioned. This covers day and night care. Some people think you can only get it if you live in a care home, but people living at home are just as entitled to it if their condition is severe enough. I'm pleased your SILs company is helping financially - many struggle with money problems after having to give up work.

You are so kind and supportive of your SIL and I know she must appreciate very much everything you're doing. Finding out what you can is the best thing you can do, even if she doesn't want to take certain things on board - everyone copes differently. When you visit, I think suggesting to her children to go out just for a short time would help, if they don't want to be away from their DM for too long.

I hope you're taking very good care of yourself too though; and that your DB is also - it can be very hard in these circumstances. 💐💐

@DoneAndNotDusted Thank you for such a thoughtful and kind post. The generosity of sharing stories has been hugely helpful to me.

I don't think I could suggest antidepressants but I will speak to DB. It's actually a really good idea - almost obvious - and yet it didn't occur to me for a minute. Thank you for putting the idea in my head - it's good to have something that might offer some mental respite.

I am due to visit SIL next week and I am dreading it. I feel ashamed of myself so I've come here to try and pull myself together. I'm dreading it for the stupidest of reasons and I wonder if any of you lovely folk have any suggestions...

SIL's voice is now incomprehensible. Even DB can barely understand anything she says. She obviously didn't do voice banking so that's that. She also cannot use her arms or hands so uses her eyes to type out messages - it's very laborious and means that she is frustrated beyond belief by the lack of flow to conversation.

I am dreading the awkward silences. There, I've said it. I am dreading just sitting there and trying to prattle on about nothing because we can't really have a two way conversation. She will know what I am doing and she will hate it. BUt I don't know how else to approach it. If we were a trio or group of friends, I suppose it would be easier because she could be more passive in the conversation without it being so obvious - but there isn't anyone else.

I am also completely stuck for something to take. She now has a feeding tube so edible snacks are off the table, wrong season for plants and I can't face any more flowers. A nice candle maybe? I don't know.

It's all so fucking fast. A feeding tube? Oxygen? No use of hands? No ability to stand or speak? Already? Fucking fucking fuck.

It's really tricky. I remember this phase with my Granny.
Companionable silence can be nice. Or could you bring/ suggest a film or something to watch together?

In terms of gifts, candles might be a fire risk if she's on oxygen?
What about an electric photo frame? My grandmother loved hers and we could send new photos to it.
Or a beautiful picture or nice blanket or maybe a reed diffuser or similar

Are there games she could play with you? I play games like chess online with my son when my muscles are weak and my voice isn't good (my condition fluctuates and gets better with rest but has some overlap in symptoms)

I am sorry - I have no words to say how dreadful this is or how sad I am for her situation.

I know this is intrusive, but what sort of company did she work for? Was it anything to do with agriculture? My uncle died of MND many years ago as did three other men he worked with, all within a few years - they all worked for a seed and grain merchant in a small west country town. It was a hell of a coincidence yet no one ever seemed to have questioned whether possibly the fungicides or other chemicals used to preserve the seed, or even a seed infection - maybe something like ergot - could be involved.

(nb. I have had a thought about visiting. Does she enjoy puzzles? Is there some game you could play together that she would be able to take part in? It might relieve her boredom and take her mind off things just for a little while)

@Exx yes both my grandparents got neurological conditions (Mnd, Parkinson's) and they lived next door to a farm. It's a hidden scandal

Yes, candle, or nice handcream or body moisturiser. Someone will need to apply it for her but skin can get very dry. Or a dvd for her to watch, something like that. Can you ask your brother if these are suitable?
A heated throw perhaps? It can get chilly when you're not moving around and have lost weight.

Is there someone else who can be there to make conversation easier. Or just watch tv/ listen to radio together perhaps. Just being there can help.

Try to act normally when you see her as much as you can. We had one person who came to visit who just kept crying and that wasn't helpful.

How is your brother doing? And the children?

@Exx
Could you contact someone who does research into MND and let them know about your uncle and colleagues? It can't hurt.

Hi 👋 I have a medication induced neurological involuntary movement disorder called tardive dyskinesia that was caused by some prescribed off label antipsychotic after a head injury and post concussion syndrome. The medication is very similar i think on a chemical structure scale to the pesticides that scientists believe can cause Parkinson's disease.

Actually, the original typical antipsychotic phenothiazine (sp?) antipsychotic drugs were derived from pesticides. In the decade that I've had my movement disorder, I've researched quite a bit and read various articles on what scientists say about the neurotoxic potency of these types of medication. Pesticides were designed to affect the central nervous system so it makes sense that they'd make a similar impact on humans, and I'm now very sensitive to anything like flea spray etc which makes me twitch a lot more.

It bloody sucks, all of it. 😪💔

@BobDear just a handhold and an acknowledgement that it's so shit. This is one of those situations where you feel shit whether you go or not, but you know you have to.

You could take an A4 whiteboard and a marker (or some paper, a bit slower but better records) and write down the topics you talk about in the corners, and then if she wants to comment she can eye gaze at the corner she's referring to.

I was about to say a lip balm but remembered that there are some you can't use when on oxygen [facepalm] hand/foot cream is usually my go to.

Ime at this point it's best to keep conversation to a minimum as it leads to frustration all round. You have to try to get comfortable with silence (I do know this is incredible difficult). Don't feel you have to prattle on to fill every gap.

Put the TV on and watch something you both enjoy. Massage, candles etc are good. You could possibly read to her. Put some music on and look at photos. Take her out for a walk. Focus on gentle activities rather than talking.

You could take her a scarf or blanket as the seasons are changing?

I'm so sorry, it's truly the pits.

I'm so sorry, it is truly awful and you're not horrible for feeling that way, it is so difficult.

I would second hand cream.
How are you with the idea of giving her a manicure/pedicure, gentle massage of hands and feet as these can get very stiff and painful and may also make her feel a little better having nice nails if it is not something she can do for herself anymore? Even a head massage can be nice and relaxing if she would let you. You can play some nice music and dim the lights and there wouldn't be a need to talk during this. Or you could ask her in advance if she would like a mobile therapist to come out and treat you both if it's not something you'd want to do yourself? That way it won't be a surprise and will give her the choice?

Or you could do a playlist of some of her favourite music, research what she listened to as a teen and play that together?

Perhaps try to find out if there were favourite movies from when she was younger, I love to watch things like the Goonies, never ending story, Sinbad, and some of the older films like Cleopatra or Ben-Hur - its a chance to really escape.
Xxx

It does get difficult at this stage. I agree with others that companiable silence, or watching something you would both enjoy, is a way forward. Silence can be difficult when you're not used to it, but I think for your SIL she may well be grateful that you're not trying to get too much communication from her. Have you asked your brother what she enjoys most? Or what films/music she would like?
Candles or diffusers could be a problem due to respiratory issues. Again, could you ask your brother if she would like hand/foot cream and if she's ok with scent?
My acquaintance whom I mentioned previously has a young daughter and she tends to dominate the situation which makes things easier. You may find this to be the situation here, especially with 3 DCs!
I do feel for you, and am sending hugs. Please try not to overthink it if you can.

I'd read her Mumsnet classics. I'd like that if I could no longer talk.
No other advice to give. She must be so frustrated and depressed. What an evil disease.

one of my dearest friends had MND. Conversation is so hard at this stage, and the thing Inlearned was that I needed to put down any feelings of time - which I found hard. Do you sew? Is there a craft you can take and do? You need to be able to bear, or better still enjoy a very slow conversation.
I am so sorry. It is terrible.

Thank you for all the suggestions.

She is not touchy at ALL so I won't be doing the hand cream thing. She is stoic and brave and physically quite reserved, so I think she would feel uncomfortable with me physically doing anything for her. But nice hand cream is a lovely thing so I might take her some - thanks to all who mentioned this as an idea.

It's really the conversation thing. We never watch tv when I go. We are usually in a room with no tv and DB did say she gets tired so not to overstay... that sort of rules out a film or anything like that.

I am genuinely toying with reading her a MN thread. She has a very dry sense of humour and would enjoy some of the funnier ones in classics. I was thinking of Cutted Up Pear - that type of thread.... BUT that feels so contrived. "oh hello - you can't talk so I'm going to read at you for twenty minutes. Here is a whole thread I've printed off so you don't have to try and talk and I don't have to pretend I can understand"... I don't know...? Maybe...

I can't think of a game that doesn't need voice or hands either.

I took old photos round last time and am now kicking myself as this would have been good. I think I am just going to have to bite the bullet and see where the visit takes us.

You are all so kind and I especially thank those of you who speak from personal experience. My SIL is a truly brilliant woman and I know many of you will have lost equally excellent people to this awful disease, and I'm really bloody sorry for your losses. All of them.

Visiting people without speech is a bit of an art, you almost have to have two sides of the conversation, allowing for input where they can. Everyone is different but I'm always fairly jolly, i don't think being miserable helps. If she knows you are coming, she could prepare texts in advance perhaps.

Honestly more old photos, or photos of current adventures sounds equally nice.

I get that you will feel awkward with silence but as someone who sometimes can speech for stretches being "talked at" can also feel strangely isolating as I cant reply.

As she has some ability to use the eye gaze software to talk could you use that to ask what she would prefer? And you can then say you are happy to chat away but equally if she would just like quiet companionship you could watch TV/listen to the radio/an audiobook or you could read to her ? giving her the choice would be really nice.

My granny used to like me to prattle on a bit and tell her what the children were up to and she would show acknowledgement even if just from the twinkle in her eye but equally we would just enjoy sitting together and listening to music.

Hello, My husband has MND and uses an eye gaze to communicate. Please just have a conversation with her just like with any friend, you just need to be patient. Yes, it is a lot slower than the ping pong of verbal conversation, but it is 100% doable. I chatter away, husband answers - just like everyone else.

I've been reading along, and several years lost a friend and colleague to this awful, awful disease. She had a four year old when she died, about 14 months after being diagnosed. I'm so sorry. All you can be is there really, now for her and later on for the family. I tried to remember she didn't have the reserves to comfort others. But it's ok to be upset so long as you are there.

OP, you are a wonderful sister-in-law.

This might sound totally off the wall but my disabled ds and I love it.

There is a free app called Merlin which lets you identify birds from bird song AND also can play the short bird song so u could eg find an owl hoot or a finch or robin.

There are some that you can maybe hear in the garden but if not, u can see the photo and play the sound.

How did the visit go OP? Hope it was okay.

Love the sound of the Merlin app @GlassHeart1.
I think I might try it with my kids and also some older people I visit too.