Christine I am so sorry for the struggles you are having with this stage of Matt's illness. My husband also became very confused in his last 2-3 weeks of life, but thankfully not paranoid. Paranoia is very difficult to deal with and quite common in the terminally ill. I worked in palliative care for 20 years as a nurse and saw it often. There is some theory that all this is caused by psychosis due to the stress of dealing with the illness and impending death. Antipsycotic medications are sometimes helpful though sedating in the amounts needed to control the symptoms. Unfortunately it becomes a trade off of having the patient awake, agitated and confused or sedated, neither are very appealing to loved ones.
As for the incontinence I had a waterproof mattress cover and bought extra sheets to have enough to keep changing them. The rattling respirations, if he is on tube feeding I would cut it back to about half, just enough to keep him hydrated and the bowels moving. Sorry hospice is not more help to you, they could do better. Hopefully the Ativan (lorazepam) will continue to help. Hang in there, it is a tough road you are travelling.


Caregiver to husband Dx. Stage 4 SCC of gingiva with 3 nodes pos. Partial mandiblectomy with bone graft from iliac crest Dec. 2006. IMRT x30, Cisplatin x3. Completed Tx. March 15, 2007. Osteonecrosis & removal of graft & plate Oct. 2007. Recurrence of SCC Dec. 2007. Deceased Jan. 17, 2008.