Sats 88,Sleepy, rambling, and muddled

[Molly90]

Hi,

For the last 3 days my husband has slept, occasionally waking for 10 minutes or so, when he does wake he is extremely muddled. He is groaning and rambling in his sleep. He doesn't want to eat. He has refused a Bipap machine and his breathing is becoming worse not quite sure what to do, as he doesn't want to go into hospital and afraid if I phone the GP they may suggest that.

 

[lgelb]

Molly,
I'm very sorry for his and your situation.

Can you help us understand where things stand -- Is this a situation you two have talked about before? Does he want to continue to live? What was he doing 3 days ago? Is he on any medication that could be contributing? Do you have access to a visiting nurse? You have the right to ask for someone to come to your home rather than go to hospital, in these circumstances.

If he is actively dying, morphine, as your GP [or neurologist] can prescribe, will ease his discontent but could bring on the end quicker, esp. if he is not eating.

If he is not ready, intervention such as BiPAP (does he have a feeding tube?) is likely the only way to improve his situation, if/as it can be improved. But the clock is ticking on how well that can help.

If he is still taking liquid but no food, his passing at home w/o morphine could take considerable time. You have to evaluate what he has before in the past on this subject if he continues muddled -- in other words, was he more concerned with living and dying without BiPAP or in living longer. Did he refuse BiPAP in writing? Ever see one? Really consider the choice?

My last word for now is that he is the same man he was, with or without disease. You can be guided by your time together and do/ask for what he at root wants most -- to live on with a machine to help, to die in peace, or to die without further intervention. In any case, you can create the most peaceful environment at home possible -- his favorite music, scents, any people he'd wish to surround him, warmth and love.

 

[Molly90]

Hi thank you for your reply,not sure I was expecting that reply, which is my silly fault. You see I just don't know where we are here with this. My hubby has Mnd/FTD. He can still walk, talk, swallow. He has muscle waste in top half of his body, and his breathing is very shallow.
He spent a few days in hospital last year and tried Bipap for several hours with various masks. However, he decided he did not like or want to take the Bipap machine home. He was given morphine for if needed. But have never needed to use it because he never panicks. He was offered a peg and also refused that.
He filled the necessary forms in for no resuscitation. And his wish was to stay at home. We have carried on since then.
But 3 days ago he started sleeping nearly all the time and has been like that ever since. He doesn't appear to have any chest infection. And, is very comfortable. I think it may be respiratory failure but I really don't know.
I am watching him now, asleep and his breathing is quick and shallow. I have taken his sats which are 88.
I really don't know what to do.

 

[Nikki J]

Can you get either hospice or a district nurse to come see him? If it is respiratory failure from ALS they can at least support you and help you decide when to medicate him if he shows any distress. You said he did not seem to have a respiratory infection. Could he have a urinary infection ( they do not always hurt) or does he have any open areas of skin that could get infected? If he very suddenly changed I would at least wonder about those though sometimes breathing just reaches a critical point. I am sorry and hope you can get some kind of in person support. We are holding your hand virtually!

 

[affected]

Oh Molly it is a hard time for you.

As Nikki said, you need palliative help now. Comfort is the key and being able to just be with him and love him while you keep him comfortable.

Ironically Chris became similar this time last year and I spent Easter nursing him through the final stages. The meds kept him so at peace for the first time in his entire illness which gave me so much relief.

Can you get hospice or a palliative service?

 

[Diane H]

He has refused BiPAP, feeding, tube, and has signed Do Not Resuscitate orders. Unless he would be coherent and clear minded during a spell of wakefulness and states he wants the BiPAP, you are following his wishes and your responsibility is to make him comfortable by easing the restlessness and groaning with medications. It is time to call his doctor who will want to check for pneumonia, urinary infection, etc. before he brings in Hospice to help you through this. You are in a bad spot having to decide whether to let him go or hope that he will understand why you put him on BiPAP, and no one is ever really prepared for this. My heart goes out to you.

 

[affected]

One of the big issues with bipap with FTD getting them to trial the machine and the right masks is difficult in the extreme.

Holding your hand Molly, lean on us and I hope you can get palliative assistance now as it will give you great strength if this is the end stage.

As Diane says you are following his wishes xx

 

[Molly90]

Thank you all so much for your replies. I don't feel so alone now and Hospice will be involved tomorrow also will take a water sample to be tested. Many thanks x

 

[affected]

Molly I'm so relieved that you have hospice organised. xx

 

[lgelb]

Molly,
How did the hospice visit go?