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.

I think also as close relatives of the children you do have a right to say something about worrying about how they will cope and asking if they have been offered any specialist support? I think even if your SIL reacts badly it would be an objectively reasonable thing to ask

My cousins got it. He was a pro rugby player, he’s mid 30’s, three kids.

diagnosed a year ago, can’t use his hands, uses a wheelchair, his speech has become badly affected, it’s such a cruel disease

I'm so sorry your family is going through this. I've nursed someone through MND professionally, it's a horrible disease. My daughter's father (my partner) died when she was a young child and I got a lot of advice at the time from grief charities and professionals. It's best to be as honest as you can with the children about what is happening and what is likely to happen in future. There's some good advice about how to find the words here. Appreciate it's hard if your SIL doesn't want to talk about it but I think you could have a role in this.

https://www.winstonswish.org/prepare-children-death-of-parent/#:~:text=In%20not%20talking%20about%20the,support%20them%20in%20their%20sadness.

I hope it's okay to re-kindle this thread. I am just so very sad this evening and don't even feel like talking to DH about it. He will make the right noises but he won't really understand how I feel. So if it's ok, I just want to write it down here.

I went to see SIL today after not seeing her since the end of January, and it was utter shit. Her voice is so slurred that I could barely understand her. I tried to be open and ask her to repeat a few times but it was really hard. I could tell she was so frustrated but there was also a strange - almost embarrassment - that she couldn't get her words out clearly. It was so fucking hard to watch because she obviously has nothing to be embarrassed about, but there was clearly some kind of shame going on, on top of all the other shit she is having to learn to deal with.

She can't really walk any more

She uses oxygen at night now.

She has a catheter

She has no strength in her arms. Her right arm is pretty much out of action completely.

She is a mum of 47.

DB tells me that she has been having more and more dark days recently. I'm not surprised of course - I cannot even imagine - but it's so removed from her natural character that it's just making me angry. This awful thing has come and taken her physical health and now it's encroaching on her mental health. And there is nothing anyone can do or say to make her feel better because there is literally no hope. She is still very closed off and won't talk to anyone - even DB - about prognosis/how she feels/what comes next etc

I am a bit worried about DB too - he has moved back in (I think I mentioned that) and is being excellent in all ways, but I can see how much he is struggling. He is trying to hold his job down, keep the children stable and mentally safe, nurse lovely SIL, whilst also having to do all the shitty admin that goes with a terminal illness, deal with multiple medical appointments, chases, follow ups, food shop, clean, pick up prescriptions, ferry the DC to various events and find ways to bring bit of joy to SIL's day whenever he can. He said that he is just going to 'keep going' until the 'end' but we obviously have no idea when that will be (and are not wishing for it, to be clear) and I'm not sure how long he can sustain the plate spinning on five broken hours sleep a night. But I'm not sure how I can help. I've offered to have DC any time, but they want to be at home. I work so can't move in to share the load and I don't think SIL would want that anyway, so I think it is what it is for now.

But SIL needs trump DBs right now and I'm desperate to find things to improve - even the tiniest bit - her days. I have bought her an audible subscription and we share audiobook recommendations, and I have sent a couple of food/drink based gifts (although i am not sure how well she is able to eat), I take flowers and plants for the garden that DB can pot or plant where she can see them, but I can't really think of anything else. Any ideas gratefully received.

Sorry - bit of a disjointed ramble, but thanks for listening.

So once more, for those of you at the back - MND is a pile of fucking shit.

Thank you.

#@BobDear
Unfortunately i had a lovely friend who was like a neighbour to me who passed with this health disorder she was a lot older than me in her 60s
When i think of her i do miss her 😔

My thoughts are with you OP, it truly is a fucking horrendous disease. It's been almost a year since my BIL lost his life to MND and my sister is still a long way off recovering her mental and physical health (she cared for him at home the whole time). They didn't have children, I can't begin to imagine how traumatic it would be having children in the house. My children found it traumatic enough with it being an uncle.

My Godmother, like your sil had a similar problem with a dropped foot, had tests & expected to be diagnosed with something like MS, but it was MND. She was diagnosed February 2010 & died in her sleep July 2011, she was 70. No two cases are the same, the disease can attack different parts of the body, some have a very slow decline, some it is faster, probably the younger you are, the longer you will survive.

Moving to an ipad - typing to voice, and then to an eye-gaze ipad (so using eyes to speech) helped my bil to continue to communicate when his voice got too hard to understand (and I remember him getting very frustrated when we couldn't understand him due to the physical effort of speaking). He also needed to be on oxygen more and more so that didn't help with talking.

What a nightmare. Good for your DB.

Could you eg take a day's leave and then spend the previous night with SIL just so your dB gets one night of sleep? Would he agree to a carers' assessment from social services?

Have the MND association been any help?

How about just producing a speech therapist at the door so that your SIL has to actively refuse to meet with her?? I know that's terrible but it might be less terrible than not doing it?

My DM had MND 24 years ago (aged 65, so much older than your friend but still far too young). I do really sympathise- it's an awful disease.

My old school friend's mother took her out for a drives - just for a couple of hours maybe but to nice places where she could enjoy a view. It was such a thoughtful thing to do that I'm still grateful to her. It means she got a change of scene in what must be a depressing scenario.

My mum also had a one sheet piece of card which had pictures on which she could point at when she needed something. Such a simple idea but very effective. It was less frustrating than the thing she had to type on (there were no iPads then). Perhaps you could make one if she doesn't already have one - personalised to her - my mum had one which she could ask how her cats were!

I’m so sorry op, this is so hard, a friend of ours passed a couple of years ago from this, It is utterly brutal, he made the decision when, ie they removed the breathing support at his request. His family cared for him till the end, it was honestly utterly devastating, 💐

It's a horrible disease, I'm so sorry. I'm also sorry your SIL hasn't come to terms with it at all. Whilst I completely understand why, it makes everything harder.
Some things I did as a care worker for people with MND:

• go to the park in wheelchair and sit with face to the sun
• got some dvds of their favourite bands performing to watch at home
• organised aromatherapy, hand and feet massages, facials etc
• went to the cinema

It sounds like your sister is fast approaching the point of needing carers, is this something they've discussed? Your brother is simply not going to be able to carry in as she deteriorates.

@BobDear i’m so sorry that this is happening in your family. It’s the most awful disease. My dad also has MND (diagnosed 2021) and is in a similar decline. His speech is really poor now, and he can do very little. It’s devastating. He doesn’t want to talk about it (which is fine-it’s his choice and I understand it) so we try to keep things light. I visit him and my mum lots and take them treats. My little girl also draws him lots of pictures, which he loves.
I know the road ahead is going to get even tougher very soon. At the moment my incredible mum is caring for him amazingly well, but over the coming months they will need some outside input. My dad will find that so hard-dignity is everything and even with the best care in the word, that’s something that this hideous disease strips away.
Keep doing what you’re doing to support your DB and SIL-it probably doesn’t feel like much (I feel absolutely helpless most of the time) but your support will mean more than you know.
Sending love ❤️

@BobDear I am just so sorry. I wish I had practical advice, but you and your brother sound lovely and I am sure your SIL is grateful to have you both. The poor lady. Sending love to you all Xxx

This is so incredibly sad. I feel so sorry for her. That's happened so quickly, within two years. I'm really glad your brother is stepping up. I imagine at some point she won't be able to stay at home but I'm glad she can stay there for now.

How far away are you from them OP?

If you can visit I'd take the kids out to the cinema etc, be there for DB to chat to, maybe do a shop, pick up prescriptions or drop the kids to weekend activities. That sort of support is immensely helpful. There are probably only specific things your SIL can eat and drink now, I would check with your DB about this, but treats for the kids or for him would be welcome too.

As pp said a simple card with phrases written out can be very helpful to point to. Not everyone wants the higher tech approach. If your SIL does want an ipad text to speech is useful if she can still type.

Her favourite videos, tv shows and the radio were comforts to my relative. Hand creams, candles etc in a favourite fragrance made the room feel just a bit less like a sick room (but subtle and natural, not overpowering).

Maybe try going for a drive as pp suggests but it depends on what SIL wants of course.

Is your SIL on her own while your DB works? That may not be sustainable for long unfortunately. I am so sorry.

My dad was furious with embarrassment about what MND took from him. Not being able to communicate properly was horrible, thankfully he did qualify for a speech assist device from the team that focused on the speaking and swallowing part of his care. These are ipad type devices with amazing software, they can be used as a type option or eye gaze. It's also possible to pre-programme regular phrases. My dad 'taught' his how to say the Welsh names of the grandchildren with trial and error using phonics as a base. Little things like that really did make a difference for him.

I know your SIL doesn't want to discuss prognosis/treatment/care, but she needs a voice. It might be worth at least making that suggestion to her about getting a speech assist device (admittedly with a generic voice) just so she can communicate - even if most of that communication is telling you to stop interfering (had a lot of that one, he also programme "fuck off" into his!).

At the point when dad's speech became almost impossible to understand, his swallowing got much worse. He was referred for a RIG operation so that he could take on nutrition and medicine via a tube into his stomach. If he hadn't, he would have aspirated and we'd have lost him much, much quicker. Even he didn't like the idea of literally choking to death so agreed to the RIG. So I would suggest that food and drink gifts are probably low on the priority list now or very soon.

If your SIL doesn't engage with treatment options and opt for a feeding tube of some description then nature will take it's course much quicker because she'll either aspirate on food/drink where fluid/solids enter the lungs or literally fade away. Hopefully her medical team are making these really shitty choices very clear to her. The feeding tube isn't a cure at all, but it does extend life until the point when the rest of the body gives up. It gave my dad an extra 18 months. If she does opt for the feeding tube, your brother will need to learn how to manage that properly. Our Abbott nurse was a fucking cow and didn't want to show my mother the ropes so it's in your brother's interest to make sure that the local nursing team is on board to help (they were angels, every single one of them worth their weight in gold).

Your brother is doing an incredible job. It's so hard caring for someone with MND. You know it's going to get worse, you don't know how or when so you're in constant stress fighting mode. He is allowed to speak to the MND team to ask about palliative care options, what triggers would show it's needed and how he accesses this on SILs behalf. Because this isn't discussing specifics about her condition, they should be willing to have these conversations and point him in the right direction. Dad hated us talking to his medical team, but they did co-operate and communicate within the limits of their role with us despite his objections.

In terms of things that my dad liked, right up until the end was photos of the lives of people he loved. The wall in front of him was filled with large photos of his children and mostly grandchildren. Presenting him with a new photo from football matches, school events etc really made his day - it made him feel like he was still part of their lives.

The infuriating adage "it affects everyone differently" still applies, but I can definitely empathise with having to deal with the anger and dismissal aspects of someone you love being tortured by MND. It's a truly fucking evil disease.

Sending you all strength and support

Thank you all for your support, experiences and suggestions.

There are people that seem to pop in and out - some of them turn up with equipment - and others are more medical, DB is trying to keep up with it all but has engaged with anything offered with DSIL permission. DSIL is being stoic but hates it, but equally doesn't want the burden to fall to DB more than it has to. But the bottom line is that even if someone pops in every day for 10 minutes, that's still 23 hours and 50 minutes on DB.

In terms of voice banking/ipads/tech - she has been very resistant and even DB doesn't know exactly what she has agreed to / done before he moved back in. She is very private and proud and he is having to let her share as much or as little as she wants with him.

DC are just plodding on and absorbing all the usual pressures that go with their ages: GCSEs / A Levels both imminent. My heart breaks for them. I have offered to take them all out/away a few times. We had something planned in the Easter holidays but for one reason or another it didn't come together, so I'm trying again. We are pretty close and have always had a good relationship but I think they are reluctant to commit to weekends away as they feel guilty about having fun with me :(

Youngest did ask DB to be 'honest with him' about how long was left and of course, DB has no idea and had to convince him that he wasn't keeping anything back. So on we go....

Thank you again. It's good to just have somewhere to get it all out.

I can understand the kids not wanting to be away for too long. Afternoons out rather than weekends away might suit better?
I know that might be difficult depending on location etc. but something to keep in mind perhaps.

PP mentioned the feeding tube. There is a window of time to get this fitted. I'm not sure where your SIL is in this window but given that you said she needs assistance with breathing at night now it's possible it may have already closed? Or it may not, but they will be reluctant to operate after a certain stage as the operation will be riskier if breathing is compromised. It should give her extra time if it's fitted, but given the course of disease not everyone wants this time so that needs to be considered too. Her doctors have very likely discussed this option with her already. If it can still be done, and if it's something she wants, it needs to be looked into urgently.

It is all incredibly hard OP. My thoughts are with you and your family.

My friend had this. He had a twitch in his leg then from there he was diagnosed but 18 months later he died.

It was a horrible way to go as you say as no cure. Prolonging of life but no quality.

He recorded his voice with a machine that worked by looking at words with his eyes near the end but she needs to do it earlier while she can speak rather than later.

He thought about going to Switzerland but it progressed so quickly it was too late.

She needs to book holidays and have quality time creating memories for them ASAP while she can as each person progresses differently.

She will appreciate someone who she can talk to, plan with and sort out any worries she may have.

What a lovely and needed lady you are.

You need to talk and sort ASAP as its such a different experience for everyone. Aw for the children xxxx

This is a beautiful book written by someone with mnd and a young family. It is a tough read and sorry if it is not what you need or want but you may find something in it that speaks to you.

www.amazon.co.uk/Short-History-Falling-Joe-Hammond/dp/0008339902?nodl=1&dplnkId=299ff530-a303-4d05-b6f0-f01593325405

My friends mum had MND she was tube fed, but even though her voice was going, she could still laugh sometimes & told the dirtiest jokes. She used to love us going round after the school run in a morning & having a gossip, just including her & doing normal things.

Hope you’re all doing ok op

a very good friend and colleague of mine had it

one thing (completely outside of the emotional impact) is that we had to raise a fair amount of money to get their flat sorted for accessibility to manage the progress of the disease. I was super grateful to the members of our community who foresaw that and planned ahead, when some of us hadn't got the capacity to do this.

@BobDear are any carers involved with your SiL yet?
I am dealing with a young family member with MND-like condition and have notified social services he needs help, too late for adaptations now.

Anyone with experience of getting carers in?

@Cafelattes how does that work with carers, can it be 24/7? Can it be more than one carer? I am unable to physically help.
I am scared of the speed the deterioration, he can't walk anymore, speech slurred, doesn't respond except in a very basic way, conversation not really possible, it feels like his mind is shutting down.