Just me banging on about DH again.

[Feebee2]

So a quick recap. DH diagnosed with MND over 3 years ago and is cared for at home by mainly me and two other carers.

DH can't walk, has some use of three fingers, can't speak and is on constant ventilation.
One of his carers went off sick about 6 weeks ago and we realised his whole care network was very precarious. After a good chat we decided a break in a nursing home would be a good idea.

Well to sum up the situation no nursing home will take him as he's too much work and the protocols regarding his ventilation are too much for them to manage.

So my problem is no one will help with the situation, everyone is sorry but no one offers a solution. What do we do.

Should add the hospice won't take him and its impossible to get any other carers.

I could phone 999, as one of his consultants suggested but he needs specialist care as his ventilation is life support. And the other carer went off sick yesterday...

[Colette-S]

Julie, i am so sorry it’s got to this. You both deserve so much better😰
Can the MND association offer any advice or support.
Are you getting any support from hospice at home?

[Feebee2]

Originally Posted by Colette-S

Julie, i am so sorry it’s got to this. You both deserve so much better😰
Can the MND association offer any advice or support.
Are you getting any support from hospice at home?

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Thanks Colette, his specialist MND coordinator hasn't a clue what to do and have posted on the MNDA forum. Hospice at Home are reluctant to come out as they don't consider him to be end of life and don't like the ventilation protocols.

[Colette-S]

Originally Posted by Feebee2

Thanks Colette, his specialist MND coordinator hasn't a clue what to do and have posted on the MNDA forum. Hospice at Home are reluctant to come out as they don't consider him to be end of life and don't like the ventilation protocols.

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It’s just not acceptable, you should not having to be dealing with this as well as caring for him, I can’t imagine how you keep going each day. What would happen if you became ill and unable to manage his care? What would his co-ordinator do then?
Sorry I can’t offer any practical help but hope someone can x

[Floridatilly]

I have absolutely no advice but I just wanted to send you my love. I am shocked and saddened that you and your husband are not getting the help and support you both need. I can not imagine how much stress you must be under. 💕

[RachaelC]

I’m so sorry you and your DH are in this situation. I am shocked that there is nowhere for you to turn to, and you’re literally having to care for him and try sort all this out too.

I don’t have anything useful to add I’m afraid, but my heart goes out to you both and I hope you manage to get some practical help soon x

[Dayle]

I can’t imagine how you are coping with this both physically and emotionally. As someone mentioned what happens if you become ill? Not sure what’s available in your area and sure you’ve researched every avenue but round here we have ( still I think) Leonard Cheshire Home’s which I would imagine are used to ventilated residents not sure if they do respite care.
Hope you get given some extra support soon.

[PoohBears#1fan]

I'm so sorry you're having to deal with this and are hitting a brick wall. Have you spoken directly to the CCG? That would be my first point of call.

[Orlando 2004]

I'm sorry you're having to go through this and hope you can find some help soon. 💜

[Feebee2]

Originally Posted by Dayle

I can’t imagine how you are coping with this both physically and emotionally. As someone mentioned what happens if you become ill? Not sure what’s available in your area and sure you’ve researched every avenue but round here we have ( still I think) Leonard Cheshire Home’s which I would imagine are used to ventilated residents not sure if they do respite care.
Hope you get given some extra support soon.

See more...

We had a Leonard Cheshire home here, Holehird at Windermere. DH did have respite there and was due to have more. Sadly the home closed this year but I'll look for another.