Oh, man, Christine, not a good symptom to add. Hope the meds help with it.
Maria

Oh no....You HAVE to try to see a doc. Are they available to you?
It really sounds like hospice is not much help! That stinks!
There has GOT to be something going on. Oh my goodness!!
Oh....and what is the name of the chill drug!!! ;o) JK
Kathy

As much as I was against the use of lorazepam, I did try this evening. He calmed, took a nap, and woke still a little off, but was caring and affectionate towards the kids and I.
I'll take it! He sat up next to me and hugged me and held my hands. It was the best feeling in the world.

I'm glad that you had some good quality time together. At this point, use whatever is available to help all of you get through with as little physical and/or emotional pain as possible.

Keeping you, Matt and your family in my prayers.

Sandy
xoxoxo

Whatever works, Christine - it's worth trying. The hugs and touching say so much more than words, and I'm so glad you and Matt and the kids had these special moments.

Awesome. Use it and relax for a bit!!!

Oh Christine,
How my heart aches with you.
Use that Lorazepam.
How wonderful that you are getting some quality time with your husband. Imprint these times on your memory.
Love and hugs,
Tammy

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.

we got him in a hospital bed now, the mattress cover is vinyl and they have provided absorbant pads to place under him. To me the paranoia is the worst. I have to give him his meds, and when he decides that I am no good, it's a LONG battle to get him to take anything I am offering, and keeping him focused long enough to gain trust has been a big challenge.

I had our bed hauled off today. It was soaked, and the box springs were ruined... I hate to think what I gave for that bed barely a year ago, but there was no way I would sleep peacefully on it again. Just another casualty of this damn disease.

For those of you not on my facebook friends, I'd like to share a couple of stories that happened this week.
First, my mom is planning to visit me tomorrow. As she was telling the people she works with the situation, a man I've never met asked her to give me a big hug... from my husband.
She tells me this over the phone, and I started sobbing so hard I couldn't talk. Totally freaked out my teenager. I convinced him I was okay, but remained quite weepy the rest of the night.

Then, today one of the gentlemen who hauled off the mattress, just looks at me and says "mercury is in retrograde, communication will be difficult and this is a hard time for crossing over. Don't take it personally." I literally had spoken two sentences to this man. It was bizarre, yet comforting as Matt has been unable to communicate for a while now.

No PEG anymore... what little fluids he takes in aspirate and cause major coughing. He tries to drink Ensure and that is the only nutrition at this time. He has no interest in it much of the time, and has to be reminded to drink.

It's coming. I hope for his sake it will come soon and peacefully.

Although, my son is going to spend spring break with relatives and will be gone a week. I would hate for it to happen while he is away.

I shall remind him to spend time tomorrow and say anything that needs saying before he leaves. I hope that he has peace.

Goodnight all, I have been having a terrible time sleeping in a bed alone, but my eyelids are finally droopy, and I'm going for it.

Love to all.

Christine

Thank you for sharing your heartfelt stories, Christine. Amazing how such words of comfort can come from completely unexpected sources. Makes me believe in angels who are pressed into service at times when they are needed the most. I'm glad your Mother will be with you. Please ask her to give you a hug from all of us here.