The loud gurgle rattle when my husband breaths is often mistaken as a death rattle when new hospice staff come to see him.

[judy1962]

Has anyone else experienced this phenomenon? It can be very discomforting when the nurses mention this to family members. We dry up secretions with atropine drops but my husband does not seem bothered by the rattle. Has anyone else experienced this?

[kay1]

that must be distressing for you, and I would have thought that new staff should be told about the problem as part of their duties

x

[judy1962 in reply to kay1]

Hi Kay I am the educator and need to educate everyday. It can get old. I wish there was more awareness of this disease.

[hazelb]

Hi Judy....Frank was never in a Hospice apart from day care for a period of 6wks so we didn't have that problem. He was at home all the time otherwise so we could look after him. We had Carers, Palliative Care team & Marie Curie night sitters. If someone knew came, I just brought them up to date & explained anything new. Carry on with the Atropine drops....they certainly helped with Frank. I used to put a drop under his tongue after " meals " & also last thing at night on advice from his Physio & with agreement of his Neurologist. If you want to message me, please do so.

This probably hasn't answered your question...I'm sorry.

Take care & try to keep smiling. Love Hazel B xx

[judy1962 in reply to hazelb]

This does help as I have been giving the drops at bedtime and not after meals. He takes his meals by tube now. Dave is in hospice at home so most of the time he is with my private pay caregivers but when various caregivers from hospice come in I need to educate them on the disease. It can get frustrating as this disease is so changing and difficult and totally misunderstood by most medical professinals due to its rarity. Thank you for your suggestions.

[salman]

My Dad has had a rattle snore for about 18 months now. It was scary for mom first but then realized it was his new normal. It is very difficult for someone to share a room and get some sleep. This is our experience.

[judy1962 in reply to salman]

Wow Salman you said it. This disease has so many new normals all of the time. I get frustrated having to recount all of the new normals to th various caregivers from hospice. I do so many extra ordinary things to help keep Dave healthy and it has been worth it because he has outlived his prognosis and has remained healthy ie no chest infections. I need to expain all of the new and seemingly smalll yet effective things to the new staff all of the time. I am glad that he is home so that I can keep an eye on tasks getting accomplished. Sadly he has progressed to the end stage and it is sad to see him lose so much. He is still very happy and fights to stay with us. This all seems so sureal.

[dllera]

Hi Judy -this is definately not the "death rattle". My dad never had the "death rattle" until a few hours before he passed and there is more that comes with that then just the sound. There is probably phlyem in there that your husband cannot clear. You may have to try something else like a suction machine and/or scolpalmine patches to help with secretions. These are what helped my dad - -we also used claritin to help keep my dad dry -you'll want to check with your Dr. first -the ingrediant Loratadine was the only thing that didn't interact with Dad's meds - -no free lunch though - these can be a little over drying so you'll need to be aware and treat with dry mouth gels and make sure the mouth is moist by using swabs with water etc. Hope this helps.

Danielle

[marq]

My husband has difficulty clearing his secretions; he does have the so-called death rattle at night and now, daytime. Hospice had given him a scopolamine patch placed behind his ear which has helped + he used atropine drops in the past. It is becoming worse even so. It is so very sad to watch him struggle with this tragic disease. Worse is the not knowing, the helplessness one feels. We've been told there are no stages to PSP, that only comfort measure can be recommended, ie feeding tube which his advanced directive rules out. Any related experience will be appreciated.