Coping as a carer

Hello and Petra, my husband who was a 2nd Dan black belt also has Mnd and has been incredibly brave diagnosedvFeb 2020 I knew nothing until oct 2029 -his me like a freight train, not coping and constantly fighting suicidal thoughts, have a 9 yr old,outsiders think Ivshould cope better but they don’t have a clue

1 Like

Hi @Act

I’m so sorry to hear that your husband has MND and that you’ve been having suicidal thoughts. It is completely understandable that you are feeling overwhelmed, and it’s unfair of anyone to judge how you are coping.

I’m glad that you’ve been able to share how you are feeling here, and to talk to others who are going through similar experiences. I hope it helps a little to see that you aren’t alone in feeling like this.

It also sounds as though you could do with some support managing the practical and emotional impact of your husband’s diagnosis. I’d suggest you get in touch with the MND Association helpline, who are there to listen, support you emotionally, and advise you on lots of practical issues:

It’s really important to get some support with the suicidal thoughts. The Samaritans are always there 24/7 if you need to talk about anything that’s bothering you (116 123, or

Please also make an appointment with your GP and ask to be referred to counselling or other support services in your area. Please be aware that GPs and many support services are not currently offering face-to-face appointments due to the pandemic, but will usually be offering telephone or online alternatives.

If you ever feel you are at risk of harming yourself, please call 999 or contact your GP for an emergency appointment immediately.

You deserve care and support so please get in touch with some of these services.

Take care,
Community Manager

Thanks Priscilla,

I am having counselling and antidepressants, and although I knew the outcome from when he first thought it was MND a year ago I just don’t seem to be able to accept that he has to go 20 or 30 years before his time, I can’t find any pleasure in life and feel I have already lost him - everyone keeps saying ‘be strong’ but they have no idea if they haven’t gone through this


It’s good to hear that you are getting some support. I would encourage you to share with your counsellor that you’ve had suicidal thoughts (if you haven’t done so already).

It’s terrible and unfair that you are facing this diagnosis, and it’s completely understandable that you don’t feel you can accept it. It’s really important to have outlets for all those feelings, where you don’t feel that you have to ‘be strong’, whether that’s in counselling or by writing things down here on this site - keep posting if you find that it helps.

Hi act I know hun its devastating to watch them suffer so bad my hubby has rapid progression and like you I’m finding it hard to cope he has no mobility his speech h has gone he is peg fed and this last few weeks he has had mon stop upset tummy which is so hard to deal with im knackered and not good mentally I have rung the doc though in desperation after the 10th night with no sleep he had non stop blocked catheter this week and they had to change it 6 times its all a nightmare like you I think how unfair my hubby 55 how old is yours x

He’s 59- 60 1 month today. I’m a wreck too

Ahh thinking of you hun its really hard isn’t it x

Are you on any of thre Facebook pages too?Where are you-yes it’s incredibly hard

Hi yes I am.its really hard are u looking after someone with mnd to my hubby has got lots worse they sent end of life meds home when we came out last weeks so I just feel so anxious hope youbare doing ok x

Yes-lots of Fb groups -not sure if they help

I am in permanent panic

Dear Helly,
So sorry to read that your husband has got worse and that he has now been given end of live meds. This must be such an incredibly hard time for both of you. I wished there was something I could do for you, but all I can do is letting you know that I am thinking of you and wishing you all the inner strength you need.

Dear Act,

Just saw your post and wanted to let you know that I am thinking of you and like I wrote to Helly, wished there was something more I could do for you. Facebook groups and sites like this can be very helpful, but it is not the same as having a real person to talk to. I know that with Covid it is difficult, but do you have some one you could safely maybe meet up with for a talk or just a walk? Even if it was only once a week? In November you wrote that you were having counseling. Has this been helpful at all and have they told you what you can do to reduce anxiety and panic?

Dear Helly, I really feel for you! It must be absolutely awful! X

Didn’t see the bit about the phone no -yes please. My husband thought he was having a heart attack yesterday and told me he wished it was

Thank you Jo sorry I don’t always seem to get notifications through im.trying to be strong but having lots of emotional moments I’m really quite scared I hate breathing issues and choking and he doing both its awful with covid as u can’t get a needed hug from a friend etc still haven’t got my counselling through I had some at the hospice last year well beginning of last year but it stopped due to covid .

Hi act my hubby is 55 and I think at the end of his journey soon he was diagnosed In 2019 mnd is a awful disease I cany think of any disease quite so vile so I understand your feelings I have days I feel like this also

same here. My hubby lost his interested in living when he was diagnosed. very very sad. He may have only two months to live now.

1 Like

Hi hun I’m not sure if I can send number on here or how to private message number im on my phone but if u know message me then I can reply with number x

Hi act I’m not sure how to send my number but private message me and ill send it over there x