Douglas in hospice

[chrissie57]

Hello, everyone
Looking for reassurance really. Doug was still having problems with his ventilation so there was a small meeting at our home consisting of the hospice doctor, his vent nurse and his neuro nurse. The upshot was Doug agreed to go into our local hospice for assessment, especially as the use of his Nippy is concerned, and to give me a break. They were also going to arrange to change his care team. He was admitted last Wednesday.
It has been awful. Wonderful as hospices are this one seems to know little about MND and they seem to know less than nothing about Nippys. Worse, his admission seems to have triggered another downward step in his condition, he seems to be getting weaker in front of my eyes, they said this morning he is now at the stage of needing ventilation full time (which I imagined was still some way off) and, worst of all to me, he has started to refuse Fortisip because he hasn't got the energy to manage them.
I HAVE insisted on having a couple of days to myself but to be honest I spent most of them catching up on things I have been able to do for him while he needed my attention and because when I see him the following dsy I feel as I had abandoned him.
I have finally accepted that MND is going to take him from me but now I feel in a sort of limbo, as if it is going to be a lot sooner than I thought

Sorry for rambling on, I just feel so helpless and useless
Christine

[Gillette]

Oh, Chrissie, I’m so sorry this is happening to you both. I’m not surprised you’re feeling as you do.

It doesn’t sound as though the hospice is where he should be for assessment if they know so little about MND and ventilators. I would have thought he should be in the vent unit at Wythenshawe Hospital, even though I know he’s not keen on it.

Have you spoken to either his vent nurse or Neuro nurse to find out exactly what’s happening and what plans they have? Has Douglas been able to tell you how he is feeling about things?

Have the hospice offered either of you any counselling or emotional support because it sounds as if it could help you both.

Please don’t feel useless, Chrissie. You’ve done an amazing job looking after Douglas. You are obviously devoted to each other. Sending each of you a huge hug.

[Ellie]

Oh Christine, I am so sorry to hear of Doug's situation and how that all affects you.

What was the issue with the Nippy that prompted the need for reassessing?

If that hospice doesn't know enough about managing NIV, perhaps it is not the most appropriate place for Doug right now and he should be on a resp unit?

The lack of calories won't help him overall - I can't remember if he has a feeding tube, sorry - and, coupled with non-optimal Nippy settings or ongoing breathing difficulties, could impact his deterioration.

Is Doug in any form to make decisions about where he wants to be treated?

You must be totally shattered. Big, big hug to you both.

Love Ellie.

[chrissie57]

Hello, Dina & Ellie
Doug is taking a kinder view of Wythenshawe now. His vent nurse is Nicky, who is absolutely lovely and has done a lot to try and keep him steady. The problem isn't really the nippy per se, it is finding a mask which is comfortable for him and that just is not happening. This is even more of a concern now that he has been told he needs to wear it all the time.

When the stay at the Hospice was proposed, neither of us realised that the staff (who are wonderful, incidentally) had no experience with the machines or the masks, although they can help with the skin problems that he suffers from. He said he would go in really to give me a break but before he was admitted last week I urged him to be sure of what he was doing, knowing how much he hates being anywhere like a hospital. As it turns out, I am even more stressed and really frightened.
He does not have a feeding tube, they said he was too far advanced for either option and would be too dangerous.
This stay isn't really a medical thing as such, it is all part of his end of life preparations and it is just making him miserable.

[Ellie]

Oh I understand, Christine.

I am still amazed, well appalled really, that nobody can find a comfortable mask for Douglas

He may be able to get a naso-gastric (NG) tube if he wants to feed, but he might have to go to a hospital for one if the hospice don't place them (a quick procedure)

Can you talk to a counsellor in the hospice and share your fears?

Love Ellie.

[Deb]

Thinking of you tonight Chrissie and Doug,

I am so sorry for the situation you are both in and I do hope you get some rest tonight Chrissie. You are doing a brilliant job caring for Doug.

Hugs to you both,
Love Debbie x

[Mandymc]

Hi Chrissie I hope the link is some help to you I'm not to good with tech but hopefully it works. My husband found his nippy mask really uncomfortable to and found this on line the nhs will not supply
it so we bought it and he gets on really well with it and it's more comfortable for him, it might be worth looking into for Douglas, I
hope you get a litle rest, xx

http://mysleep.resmed.com/GB/en/CPAP-Masks/Full-Face-CPAP-Masks/AirFit%E2%84%A2-F20-Mask-Quiet-%26-AirTouch-F20-Cushion/p/640003

[Gillette]

Hi Chrissie,

I agree with Ellie about considering an NG tube for Douglas. Have you thought about trying to get him admitted to the vent unit?

The two of you are so obviously devoted to each other. It is so sad that you are both having to go through this. I really wish I, could do something constructive to help.

Sending you both much love and enormous hugs.

[chrissie57]

Good morning everyone, sorry I went quiet but I fell asleep in my chair.

Ellie, I feel it may be Douglas' face which is the problem, if that makes sense. He has tried every single mask going, I think, and none have been truly effective. One of the issues is that he seems to have very sensitive skin. Even a small amount of escaping air (not enough to set the alarm off) which the vent nurse is not too important seems to cause him very great discomfort. The best mask so far has been the full face one but even that seems to cause the same issues.

The naso-gastric tube has been mentioned. In Douglas' inimitable fashion, he indicated he would not consider it because it was barbaric😕. I hope he might change his mind as he finds it harder to eat but he is a bit stubborn😒.

Mandymc thank you so much for the link but I was wondering where your husband was treated? We have been provided, free of charge, with ALL the masks Doug has used - we have a couple of those pictured, which were not effective but of course cannot be used by anyone else; I have thought the supply is a bit wasteful. So I just wondered where you were that would not supply them - the authority may not fund them but our experience is that the NHS will

[Ellie]

Chrissie,

This is the mask I wear in bed - Total Face Mask by Respironics - no contact with the nose and supremely comfortable. Maybe it'd suit Doug? (not great if he had to wear it during the day though)


Total Face Mask.jpg


Love Ellie.

[miranda]

So sorry to read about the problems you are having. I hope someone comes up with positive solutions for you.

[chrissie57]

Thank you everyone. Ellie, the full face mask he has is slightly different to the one you have. I am going to ask our vent nurse if she thinks it is worth me buying one like yours. It sounds just what Doug needs.

Dina, I think he would prefer to be in Wythenshawe, ironically. He certainly feels that the Hospice will not be able to succeed where the specialist unit failed. I really wish that he had not agreed to be admitted.

I think it is a measure of Doug's personality that when we got his copy of the meeting report that went to his GP, the Hospice doctor wrote 'we suggested Mr Smith was admitted to St Ann's for assessment; somewhat to our surprise, he agreed'. For a man who can't speak, he is very good at making his feelings known😅

[Ellie]

Christine, before you go spending money, this video might give you a better idea if the total face mask would work for Douglas (or not!)

[Gillette]

I think it is a measure of Doug's personality that when we got his copy of the meeting report that went to his GP, the Hospice doctor wrote 'we suggested Mr Smith was admitted to St Ann's for assessment; somewhat to our surprise, he agreed'. For a man who can't speak, he is very good at making his feelings known😅

Yes, I think he is, Chrissie! It’s good to know he still has his spirit.

[chrissie57]

Well Douglas should be home on Wednesday 😊.
Ubfortunately I seem to have picked up one of the stomach bugs floating around and haven't seen him since Tuesday - didn't want to risk the health of Doug or anyone else in the Hospice.

The doctor rang yesterday to tell me how the assessment had gone. His coming home was the good news. But I was somewhat shattered to be told that the Hospice gave been unsuccessful in finding a way to make him comfortable in a mask, despite also saying he is now needing to wear his mask a lot more.

I am not sure I really understood what I was being told because I feel really woozy - I really need to get better and speak to the doctor face to face to understand any implications to what he was telling me

Apologies for rambling again - sometines I feel that every time I find a little bit of optimism, it gets snatched away. I feel now as if I am in a sort of limbo, wondering what is going to happen next

Christine