Don't Know What To Do

Hi Everyone,

My Gran has been diagnosed with Motor Neuron Disease (ALS version). Currently, she has drop foot on one side and is generally having trouble moving her legs so she does not leave her house (unless pushed in a wheelchair and even then will only really go to medical appointments). Her speech is slowly deteriorating (slurring like she is drunk a lot of the time and mistaking words for each other).
I have been the only person to go round to her house, pretty much every day, for at least 2 hours on those days. I have other relatives, but most of the ones that can help are elderly themselves and either don’t have the physical capacity or they have their own health/family issues going on, so they’re only really able to pop in on my Gran from time to time.
I work full-time and I am rapidly losing control of the whole situation.
I am mentally and emotionally exhausted every day. I am trying to remain strong for my Gran, who is clearly distressed at her terminal diagnosis and her lack of ability to do much for herself, but I am also trying to keep on top of two households’ load of work and I’m still trying to do as best as I can at work, whilst also trying to ensure I spend time with my fiance and other members of my family so that they don’t feel like I’ve cut them out.
My Gran does have a morning carer, who is supposed to help her get out of bed/get dressed/wash/do her breakfast/anything else she needs at that time, but she’s so uncomfortable with the professionals, she is usually dressed and washed herself before they get there (needless to say she struggles massively to do this). I can’t get through to her that she needs to use the professional help provided to her.
I do housework for her and help her wash her hair/change her underthings/ take her to her medical appointments etc.
Knowing the progression of MND is going to just get worse, I am not coping terribly well. Gran knows I’m not coping well, but she has said nothing to try and alleviate my distress. It all got a bit too much for me this weekend so I got drunk and cried until I couldn’t cry anymore. All I’ve wanted to do for weeks is sleep because every day I wake up, I know things are just a little bit worse and that it’s a day closer to my Gran dying. I was suicidal last week, until my big meltdown.
I would love to have a week away somewhere, just to recharge my batteries, but I don’t see how that will be possible when my Gran will not accept any other outside help whilst I am away. I don’t think I can do this for much longer.
I cannot bring myself to force my Gran to do anything she doesn’t want to do, of course- I wouldn’t want to do anything to upset her. However, I feel like I am going to crash hard if things carry on the way they are. (Example: I’m starting to fail to sleep in the evenings, causing me to oversleep in the mornings and start work too late. I don’t want this to get worse to the point it causes real problems).
Has anyone else been in this type of position before? It’d be great to get an opinion on the issue.
Note: We are waiting for an MND nurse to be assigned, but it’s already been over a month since diagnosis and there’s been no sign of a nurse getting in touch. We have an OT, but she rarely comes out. Physio was meant to have started by now, too, but that’s another no-show. I have applied for blue badge etc. on my Gran’s behalf so we’re up-to-date on things like that.

Hi Chrissie,

some info on the MND website, specific for carers

Like here they have a support forum too

Try chase the OT up and any other professionals. Sounds like you are already at crisis stage yourself and like you said, ready to go under if no support forthcoming.

If you feel the need to talk to someone, the Samaritans are good. Further info on link below as well as the contact phone number

You are also entitled to an assessment in your own right so contact social services. It is in their best interests to support you where eligible as if you take ill or refuse to care they will be left with the whole lot to sort.

Make notes of any calls you make and people you talk to. Put a brief description of why it was done.

In meantime members here can listen and empathise with you so keep us posted.


Hi Chrissie,

You CANNOT go on like this, and neither can Gran.

It probably did you lots of good to cry until you can’t cry any more. I know just how horrible that is, but it marks a significant point in your caring “journey”. It’s not that you don’t want to care for her, you just can’t do it any more.

Your own health, your own needs, are every bit as important as Gran’s.

For you, I would suggest that you ask your GP to refer you to a good counsellor, so that you can talk through all your feelings and fears. It was life changing for me.

How old is Gran, does she have any children? It’s really important someone has Power of Attorney now.
Is there a hospice in your area that could support both you and Gran? They are NOT just for dying, they are there to support people to live the rest of their lives well.

A long shot … don’t rule out CHC / NHS Continuing Healthcare :

Hi Rosemary,

Thank you for your input- I am already on the MND members forum and I have read everything on the MND Association website regarding caring etc. I reached out to the samaritans last week and they did not reply.
Regarding the carer’s assessment, I don’t believe I’m eligible for any help, as I do less than 16 hours’ caring per week (it makes me sound like I do not very much, because of the lack of length of time, but I really do quite a bit in that short space of time).
There is a multi-disciplinary meeting coming up on May 1st, which I will be attending, so I will bring up the concerns about the OT/physio/MND Nurse at this meeting.
Thank you again :slight_smile:

Hi Bowlingbun,

It definitely did some good to let out the tears. I know this sounds ridiculous, but I went for counselling when my Mum died and I found it stirred up more confusion and suicidal thoughts than before I’d had a counsellor to talk to. I’ve had bad experiences with counselling in the past that just haven’t worked (I guess my mindset is just that, if they can’t resolve the actual problem, why waste what little free time I have?) I’m young, but I’m a pessimist, it seems!
Gran is 80 this year. She has 2 children- one has passed and the other lives miles away (ex-alcoholic and ex-drug addict + ex-convict- wouldn’t trust him as far as I could throw him tbh). We’ve talked power of attorney just after diagnosis, but she’s not said anything about it since then. There is an hospice nearby and we have a meeting there on 1st May with the neurologist, respiratory specialists and everyone else involved in the ‘care’.

Hi Chrissie,

I have removed the actual name of the hospice. This purely to ensure your privacy.


Your meeting for May 1st - keep a notepad handy and start making of note of any issues you want to raise. Don’t leave it till last minute. Include anything and everything no matter how small you think the issue may be. Stand firm and make sure they are aware of what you can and cannot do.

Your grans safety is paramount but your own health needs are just as important too. Please keep us posted


I would suggest that you write to the hospice and explain the current REAL situation.

I say real because my mum would tell people she could do all sorts of things that she hadn’t done for yours, but couldn’t admit it to herself.

You need to tell them how gran really is, and most importantly, about your health and your struggles to cope with gran. Don’t worry, they will have met similar situations repeatedly before.

The counsellor you had before wasn’t very good. Make sure you find someone who is qualified, who you can trust with your innermost thoughts, in time. I feel I can “offload” completely to mine. She is like a trusted friend, whose prime concern is me and my wellbeing. So often the medics are only concerned with their patients and see any carer as little more than a slave!!
A good one would support you to work through your feelings and “put them to rest”.