Advice on motor neurone disease please

[KLH]

Thanks Terry.
I'm back at the hospital this morning as they called us to say he had deteriorated. Waiting for the ward round as he improved a little in the last hour. He's really agitated and hooked up to alsorts. It's grim.
A reminder never to put things off

[Ellie]

Hi KLH,

So sorry to hear your dad is poorly and agitated.

If he is on oxygen, that could be exacerbating his agitation - O2 shouldn't be used with ALS.

If he is not on O2, morphine or lorazepam will help with his agitation. How is his breathing?

Big hug to you.

Love Ellie.

[Terry]

Hi KLH,

I am sorry to hear that things have got worse.

Try to take care of yourself a little a have brakes when you can. If you can rest a bit as well.

Thinking of you both.

Hugs Terry

[Kayleigh]

Hi KLH,

Sorry to hear that your dad is so poorly.

Hopefully, he will be given some medication to make him feel more relaxed and comfortable.

It's good that you are able to be with your dad as, undoubtedly, he finds it very comforting that you are with him.

Please try to look after yourself by eating and resting regularly.

Thinking of you.
Love,
Kayleigh x

[Deb]

So sorry, KLM that things have deteriorated.

I really hope that they are able to keep your Dad calm, comfortable and that you feel he is being well looked after.

Take Care of yourself too.
Thinking of you
Love Debbie x

[KLH]

Thank you all for your kindness, it really helps.
He has a bad chest infection which affects his breathing etc. He's on antibiotics so it's wait and see I think. I'm home and knackered. Back tomorrow.
Friends have been great. It's hard not to sink very low. I've been close to my dad for years, particularly since my mum died in 1996. He's such a massive influence on my life and my biggest fan. I dread losing him but I know it has to happen.

[shrew]

Hope that he has a comfortable night and is feeling a lot better tomorrow

[KLH]

Thanks shrew. I rang the hospital and they said he had a peaceful night which is a massive relief. I.m taking a radio and photos in for him, plus some hand cream I've made to massage his hands/feet... If he'll let me. Any other ideas welcome

[shrew]

great news. maybe some nice cordial?

[Ellie]

Good to hear your dad had a better night KLH, I hope the antibiotics work quickly for him and he continues improving.

Have you a device, with headphones, for audio books/e-books? I find listening to books relaxing and takes my mind off other things. Obvs it shouldn't be an expensive bit of kit, especially if he's on an open ward.

Has he wi-fi access?

Love Ellie.

[Terry]

That's good to hear KLH;

Massaging his feet and hands is a great idea. I like my hair to be washed if I can't shower. Also it's lovely to have a fresh mouth, it might be possible for him to have a very small bit of a ice lolly/crushed ice drink in a day or two.

Ellie's idea about audio books is a good one, you can get them from a library but check the discs as they can be damaged.

Also see if you can get him transferred to a hospice as they are a generally a friendly place that are used to dealing with Mnd people. Many of us have been in their for a week or two.

Fingers crossed, love Terry

[Kayleigh]

Hi KLH,

I hope your dad is feeling more comfortable and that his chest infection is easing.

Also, I hope you are OK and that you are getting enough rest.

Best wishes,
Kayleigh x

[KLH]

Hello all
A Doctor saw me and his wife today and said this is the end. He's deteriorated very quickly and chances are this will continue.
So what do we want? Home hospital or hospice. I argued for hospice. I don't want him to die in a hospital bed with pictures of flowers on the windows.
She said we'll have to see if he stabilises. Then later I spoke to a nurse about palliative care. He said we'll see how he is over the weekend. I'm not sure we have that luxury so I pressed for a quick referral.
I've no faith this will happen. I think it is easier if he stays on ward and dies. I don't want this for him. He's ill but wants to communicate.
I'm completely worn out. I'll visit tomorrow and want to press for palliative support. Maybe I'll have to camp out in the hospital to ensure they do it

[Lynne K]

I hope that you get enough rest even if you stay in the hospital KLM. I'll be thinking about you and your dad. Lynne x

[Kayleigh]

Dear KLH,

I am so sorry that your dad's health has declined so quickly. It is understandable why you would prefer him to be moved to a hospice. Hopefully this will happen, if your dad is well enough to be transferred there. Please be re-assured that even if he does stay in hospital, the doctors and nurses will make sure he is made as comfortable as possible and that he is in no pain.

Your dad is undoubtedly getting immense comfort from your love and support. He knows how much you love him, and the love you share will always be in your heart.

You are going through such a tough and sad time at the moment. Please know that you are a wonderful person for always supporting your dad and for making sure that he is looked after and cared for properly. Even if he can't be moved to a hospice, your love and care is what your dad will continue to treasure as being most important to him.

Thinking of you,
Kayleigh x