@ MNChickadee

abc123

Hi Chickadee, I would appreciate your input. My mom is extremely restless today, this is the worst I’ve seen her since being bedbound. Her morning meds consist of a Ativan and a Tylenol 3 with Codeine at 8am. That usually helps her a lot. She was tossing and turning so much we were afraid she would hurt herself on the bed rails. We gave her  a low dose of liquid Ativan that didn’t help her calm down at all. Did you go thru this amped up behavior with your mom? What would be your next step med wise? More Ativan or a low dose of morphine? I need to hear from others about their experiences with their LO’s during their last weeks before dying. Thank you Chickadee. And others. 

Sincerely,

abc123

ButterflyWings

abc123, can/will her hospice nurse stop by to assist and/or advise asap?

I went through this with a LO but not a PWD so they had different med concerns and constraints. Also, they were bed bound (stroke victim) so mobility was limited though she managed to unmake the bed, shred the pads repeatedly, and nearly moved herself off the air mattress to wedge between the rail somehow despite being totally paralyzed on one side. 

I could not believe the sudden strength and stamina! That over the top restlessness subsided but was a challenge for a couple of days (and nights) I recall. Then it just stopped. Not sure of the trigger or why it eventually resolved itself. For us, this was weeks before her transition. Again, not a PWD but I recall her hospice team was on speed dial for me and they were a great help.

MNChickadee and others will have some specifics to share. Hopefully you both can get some relief! I am (virtually) sending you loads of stamina, hugs and peace of mind that you are providing her safe passage through this last leg of the journey and that is such a precious gift.

MN Chickadee

It could be terminal restlessness, which people get as part of the dying process. It comes before active dying, the days and weeks before active dying. It can be caused by the pain meds themselves, from uncontrolled pain, from the organs shutting down and other things.  My mother had a brief period of this, maybe a day. It happened about 6 days before she passed. Some  people apparently have it many days or a couple weeks. Hospice often treats it with medication especially if the person is in danger of hurting themselves from it. I don't remember what med they used. I think a benzo. Your mother's ativan might not be a high enough dose. Hospice should come out and look at her vitals and signs of uncontrolled pain and then decide if/how to treat the restlessness. If you haven't made the switch to morphine it is probably time. The morphine and ativan will then work together to make her comfortable.  Make sure the environment is as calming as possible with soothing music reduce sensory input issues like light and noise. My mother was extremely sensitive at this phase. A relative of mine works in a hospice house and she says the restlessness phase is often the hardest on both the patient and family. Hugs to you. You're in the weeds now, these hours and days ahead are the hardest. Wishing you strength.

M1

Don't be afraid of the morphine abc. Agree it's probably time. Thinking of you. Hope the hospice folks can help you make these decisions.

abc123

Butterfly, Chickadee & M1, I sincerely thank you for your support and wisdom. I could never make this journey without you. I will call hospice in the morning. I did start her on morphine at 2pm today. She has stopped thrashing about in her bed. Finally she seems more peaceful and comfortable. I value Mom’s  nurse, she was also my husbands nurse. But I really needed to hear from you all to validate my thoughts.

M1

Sounds good. You get some rest too....

mommyandme (m&m)

I’m sorry abc… sounds like the morphine is needed now.  Glad you saw a peaceful result from it for your mom.  

My thoughts are with you.