It's been some time since I have posted but I have been consoled and guided by reading this wonderful blog throughout my DH's decline.
I believe my DH has one foot in stage 7 suffering from AZ and Parkinson's with full incontinence. He still walks but has no idea how to adjust himself in bed or chair. He still recognizes close family and caregivers in his MC unit with only occasional confusion. However, he does not recognize food and will eat almost anything - including deodorant, toothpaste, puzzle pieces, lotion. He chokes a bit while eating mechanical food but still coughs.
About 3 weeks ago he began manic pacing in what seems to be attempts at self-soothing. He sobs inconsolably most of the day and sleeps between 2-4 hours daily. We have a POLST with comfort care, no antibiotics. He has gone from 165 to 118 in less than a year. The pacing began 3-4 weeks ago along with a slide down in cognition and a couple brief incidences of hallucinating.
He has repeatedly tested negative for uti's and has no obvious causes of pain.
His inconsolable emotional torment is a devastating thing to witness and I wish him peace from this horrible journey.
He is on hospice but his behavior has been so difficult to manage (striking out physically when he feels he's being threatened, poor sleep, walking into other's rooms and personal space, and crying) that they have permitted him to work with his geriatric psychiatrist who is shocked he is still not sleeping. His drugs have been gradually increased to - seroquel 50 mg 3 x daily, 30 mg remeron nightly, .25 ml ativan every 4 hours, 2.5ml morphine at night, 20 mg celexa daily, and trazadone 100 mg every 8 hours.
Have any of you experienced similar circumstances? Could this be the beginning of terminal restlessness?
My husband got somewhat like that closer to the end. He couldn't walk, but of course he would try, so we had some falls. His constant begging to go home (he meant his childhood home--long gone) with occasional tears, was just heartbreaking. He never did the eating of non-food items. He didn't sleep much either--he was at home, and I was up day and night with him. He finally deteriorated all at once, with three falls in one day and a total lack of awareness...super-restlessness and agitation. He was in the hospital for a week and they had to give him a sitter one-on-one the whole time while they did all their testing. It turned out that the only problem was simply the Alzheimers had taken a sudden big downturn. He did a stint in Rehab--mostly to give me a break and to set up the Hospice care plan for our home--get the medical equipment and oxygen in--and then he came home for four months with Hospice before he died. All the restlessness, agitation, not sleeping, etc. etc. continued. He would get angry and combative. Could be showered and toileted, with maximum assistance of one person, although he was not always cooperative and also was incontinent a lot. One day after three months and three weeks of this, the aide and I found him just slumped in his chair out on the screened porch--I had been out, and she had left him to go make up the bed and tidy the bedroom. He was just sort of a blob--just not responsive, and not able to assist at all with the transfer into the wheelchair and back to bed. It took the two of us to get him back to bed, and he never got out of it again--he would be restless and agitated, but he was sort of half in a coma and they finally let him have morphine. That was the miracle drug, to be sure. He became at peace, relaxed and comfortable in his coma--and died with my arms around him a week later.
Elizabeth, thank you so much for sharing your story.
An aquaintence who is a hospice nurse (but has not seen DH) said it sounds like he has terminal agitation or restlessness. The extreme degree of DH's depression and sobbing has hospice considering that an increase in Ativan to allow him to sleep may be better than his horrible despair sas other medications don't seem to help. Of course, they have to dance around with the sadly undertrained MC management. I fear that the MC management will send him to a psych hospital in what could prove his final weeks. If I learn anything significant, I will post. Thank you.