Paradoxical breathing - are we near the end

[DeniseB-C]

Hi everyone,

It has been a long while since I have posted. Things have moved on drastically. My dad has now been bed bound for a while. More recently his respiratory function has decreased. He has paradoxical breathing. It now takes him a great effort to breathe. He has never taken to the NIV and no longer wants intervention anyway. He simply wants to slip away now. He is about to start on liquid and patch morphine to manage his constant pain and breathlessness. I was watching him on Saturday (when I first noticed the paradox movement of the chest) and the effort it is taking for him to breathe is quite immense. I guess my question is - how long can he sustain that type of breathing without NIV? He is sweating from the sheer effort it requires. Looking at him, I think he can’t have long left. Palliative care team don’t seem to like talking to us about death which I find frustrating. They just say they will keep him comfortable. I am struggling with knowing when the end might come. I want to be at his bed side but with work and children cannot be there indefinitely.

Sorry, I know the question is akin to “how long is a piece of string”.

[Drumond30]

Hi Denise

I don't know the answer to your question but I wanted to let you know I am sitting here in exactly the same position as you. Dad couldn't get on with the NIV either and he is now on a morphine pump, all we've been told is his breathing is worrying.

I too have young children and a job, my parents don't live that close either. My work have been excellent and have given me the time I need but I still feel pulled in lots of different directions.

Thinking of you and your family xx

[DeniseB-C]

Thinking of you too. It is just awful. Dads brother is flying over from Ireland tomorrow to see him as we fear he may suddenly slip away. Can’t bear to watch him suffer. It has been a long hard road and all I wish for my dad now is some peace.

[Ellie]

I am so sorry Denise, this must be very distressing for you all.

Palliative care team don’t seem to like talking to us about death which I find frustrating.

That's a core remit of the palliative role - to communicate with those involved and not leaving the family 'guessing'... Is the whole family agreed on knowing what's happening, no assenting vibes? Have direct questions been asked to the team?

The paradoxical breathing in itself is not necessarily an end of life sign, it depends on accompanying symptoms - he should be more relaxed on morphine and his symptoms change. When is he starting morphine? Any mention whatsoever of likely next steps?

Sending you a big hug xx

[DeniseB-C]

Thank you as always Ellie for your candid and methodical response.

Hoping the morphine arrives either today or tomorrow. GP marked it as urgent. Dad also expressed a desire for palliative sedation. They want to see how he gets on with morphine first of course.

Everyone in the family want to know what we can expect and direct questions have been asked. I guess as MND is so different for each person, they just don’t know? GP looked concerned yesterday but didn’t say much. I called dads MND consultant nurse to talk it through. He was much more direct and said although he couldn’t put a time frame on it, he thought it was time to prepare ourselves as it sounds as though he may be coming to that time. He pointed out that patients often slip away quite suddenly at this point.

Feels like living in limbo right now. I don’t know what to tell my kids. They ask me if Grandad is going to die soon when they see him and I can’t answer that question.

[Ellie]

Hoping the morphine arrives either today or tomorrow. GP marked it as urgent.

Today, Denise, push for today if possible, even just the fast acting Oramorph. Your dad should not have to endure breathlessness at this stage of his life. xx

[DeniseB-C]

Just called pharmacy. They haven’t had the delivery yet. Hoping this afternoon.

[Drumond30]

DeniseB-C my Dad is pretty much sedated with the morphine pump so hopefully the morphine will allow your Dad to settle. He does know we are here though.

Just like you palliative care haven't told us anything really, they come once a day because of the morphine, a quick reset of the pump and gone

[Piglet]

Denise and Drummond just to let you know my thoughts are with you at this difficult time. I hope both your Dads are made comfortable as much as possible. Xx

[DeniseB-C]

Morphine delivered. Morphine patch and liquid morphine administered. Dad already so much more comfortable. Thank you all for your kind words.

[Ellie]

DeniseB-C Oh thank goodness Denise 🤗👍😘

[Ellie]

DeniseB-C Oh btw, he can expect some constipation from taking morphine, I'm sorry to say 😬

[DeniseB-C]

Always something. He’s already taking daily laxatives as it is.

[DeniseB-C]

Hello everyone. I hope all are as as well as can be.

Over the weekend my dads breathing has worsened and his oramorph dose has been increased to be taken every 2 hours instead of 4 but when it begins to wear off it is most distressing to watch. He has now taken the decision to withdraw his peg feed. As this is his only form of nourishment we have been in contact with the hospice about making him comfortable during this process. Hospice nurse is speaking to the doctor tomorrow morning about the next steps but has indicated that if he wanted to be fully sedated this would need to be at the hospice rather than at home. His last peg feed was overnight Friday.

I knew my dad would eventually come to this decision but I don’t really know what to expect. I feel he is making a very brave decision and taking the last bit of control he can, but I am scared about how end of life will look for him now he has opted for this route.

[Ellie]

DeniseB-C Oh Denise, I really feel for you and can only imagine how I'd feel if it were my own lovely dad we were discussing.

Normally at this stage meds are delivered continously via a syringe driver (pump) through a little plastic tube or needle inserted into a person's arm, tummy or thigh.

The meds are gradually pumped in and the syringe is replaced with new meds every 12/24hrs. Meds given include painkillers, antisickness, secretion stoppers and sedatives.

If the hospice staff think your dad's wishes can be best met in the hospice itself where there are nurses on hand 24/7, and if there are no strong family arguements against it, it does sound reasonable for your dad to go there, presumably by ambulance.

If your dad has a strong wish to stay at home, in theory that is just as doable.

Wishing you strength.

Love Ellie xxx