Coping as a carer

Hi im caring for my husband he is 55 and has motor neurone disease. I dodnt really know alot about this disease until my hubby got it all I knew waa Stephen hawkins had it. But its changed the whole family life so much. He was diagnosed in March 2019 after tripping and falling. He now can no longer move any part of his body apart from his head he can no longer speak its just like noises he has a tube fitted which we put his meds and feed through although some days he tolerate puree food .he chokes a lot where he can no longer cough up flem etc . Its full on 24/7 .we started having carers in about 12 weeks ago which is a great help.i just can’t get my head around this fit man can now do nothing for himself he locked in this useless body but his brain is as good as ever he is always upset and frustrated and I don’t know what to do to help him deal with it .I don’t deal with it well ill go out the way if I feel upset have a cry and then go back in the room with him and put on tht brave face but at night like now im in bits .he been In hospital 7 times since feb with aspiration pneumonia he came out again a few days ago each time we are warned it could be the end .I just am.mentally and physically worn out its the most vile disease to watch someone disappearing before your eyes .just wondered if there is anyone else on here who is dealing with mnd or is caring for someone very ill and wondered how they cope thank you helen x

My husband had similar symptoms but he had a tumour on his brainstem that grew very rapidly and killed him after he’d been at home for 10 days.
Your GP or neurologist should be able to help with the anger and frustration. Have you got a specialist nurse? There are tools that can help, tablets etc., as well as drugs.
Have you got someone to talk to, someone who you can rely on for help? It’s devastating to see a loved one like this. You are suffering as much as he is. Does it help to play his favourite music or watch a film together? Does looking at photographs upset him? Forget about dealing with us well, none of us can do that. We muddle through, doing the best we can for a loved one.
I tried to set aside time in the evening to watch a film. We’d sit holding hands. We only managed it a few times, but it seemed to help.
I wish I could help you more. Please take all the help you can get and if you need more, ask.
C xxx

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I meant, dealing with IT well… Sorry xxx

Dear Helen,
My heart goes out to you. I cannot even begin to imagine what it must be like for you and your husband to cope with what this disease is doing to him. I admire you for caring for him and am glad you now also have some help from carers. Have you tried to get specific support for your situation? There is a charity that provides support and information for people affected by MND. I have just looked at their website and they also have an online forum where you can ‘talk’ with others, and a telephone line. This is the link to their website: https://www.mndassociation.org/
Jo

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Ah thank you so much Jo64 ill take a look at this its a evil.disease he isn’t sleeping either no meds seem to be helping and they have to be careful because of his respiratory issues . I was up hoisting him on loo at 3.50 carer was here luckily last night as it takes 2 x

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Hello Helly
I have no experience of MND I’m afraid but I had to reply to you as I feel your heartbreak. However I do have experience of caring for my husband in his last months and watching him slowly fade away and it becoming impossible for him to do anything for himself. He wanted no carers so I looked after him single handed and promised him I would do this. He didn’t want any friends or family to know how ill he was and like you I cried when I was out of view.
I prayed that I would have the strength both mentally and physically to be able to do this and I think God heard me. When I finally admitted I needed help my husband died a few hours later. He knew it was time.
My heart goes out to you and know all about the mental and physical strain you are going through. I wish I could do more but you are welcome to contact me anytime by PM if you want a chat.
Try to take care of yourself as best you can.
God bless
Pat xx

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So sorry for your loss pat its really hard isn’t it hun he was such a strong man he was always the one that held things together ive always been a anxious person and now im having to do everything and look after him its very tiring even the lil tasks like hoisting him on and off the loo takes so long its just really hard all of it he so frustrated to so he gets angry and its even harder then because I cant understand him as it is ,as now his speech is just noises .thank u I will.takd you up.on a pm another day today is manic x

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So sorry for your loss yes we have a specialist nurse but since covid all these people are si hard to get hold of hun .I have friends but u don’t want to keep going in about it to them as dont want fo bring them down to.i try and sit beside him in his wheelchair and watch stuff on TV. We have to be careful what we watch he has what they call emotional incontinence so he crys at nothing so we have to keep turning stuff over he hates looking at pictures he gets upset by them seeing how he use to look etc . Yep we dont get a chance to look after ourselves so we I use to always look after myself now im lucky if I get dressed before 2 pm x

Dear @helly, sorry, I don’t know what to say to you, what can you say to someone who is going through the **** you are, all I can say is I am very sorry your husband has got this horrible disease, who can blame him for getting angry and upset, it is horrendous, and I am very sorry you are having to see him like this. You’re doing such a good job looking after him, I am sure he is so proud that in his moment of greatest need, you have been there for him.

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Thank u so much for your kind words

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Dearest Helen, I am soooo sorry to hear about your husband’s MND illness. I completely understand how you feel. I am experiencing the same feelings. My husband was diagnosed in January 2020, but I believe, his illness started already in spring 2019. I am not coping well either. It is a terrible disease. I feel very isolated. I can’t talk to my friends, I can’t talk to his family. I have tried, but they don’t understand. I am having panic attacks, I can’t sleep properly. I worry all the time. Being locked inside your body when your brain still functioning is heartbreaking. My husband was always fit, always looked after himself. Why this illness? I would never know the answer. I am putting on the brave face too so I don’t upset him. I have made excuses about his frustration, about everything now otherwise I will explode. I love him so much. Helen, please keep strong. You are doing amazing job. My thoughts are with you!!! Best wishes, Petra

Dear Petra, I am so sorry you are also going through what Helen is. There are no words that can describe how awful this disease is, for both the sufferer, and the carer. Please take care.

Thank you Abdullah!
really appreciate your kind words.

Ahhh hun your hubby to my hubby was diagnosed in March 2019 but looking g bVk the symptoms started in jan 18 we been in and put the hospital.lately with him having pneumonia now he has a high temp they did blood say its an infection tonight he started with sickness and the runs we usually hoist him on to loo but didn’t get him there in time so not good thank god we had the carer here to I rang the doc who is ment to be coming out as he is peg fed and will dehydrate if it carry on its a waiting game with docs I. So tired need my bed but they aren’t here yet luckily we rang district nurse who supplied us with some pads as not sure what I would done this is a vile illness you are welcome to private message me hun and ill give you my phone number u can text or ring me for a chat when ever as I totally know how you are feeling xx

Helly and Radikov you are two brave ladies and my heart goes out to you. I hope you can help and support each other through this terrible time. My love and prayers to you both and your husbands.
Pat
xx

Thank u I don’t feel very brave at mo though he been very poorly this week to so uts been hard x

Thank you Pat. We just have to keep going. xxx

Hello Helen,
Another busy day. it would be lovely to speak to you. my email address is [edited by moderator] Petra x

Dear Radikov,
I see that your post has been edited (probably because for safety reasons no private e-mail addresses can be included in posts). You can however send you e-mail address to Helly in a private message. If you click on Helly’s name, you should see a ‘private message’ option come up in the top right hand corner. If you click on that you can send her a private e-mail that only she can see and reply to. I hope this info is helpful .
Jo

thank you ever so much Jo64. very helpful. :slight_smile:

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