the long night

I'm so sorry, Pookabera, for all that you and your family are going through. This must be so very hard. Much love to all of you!

Be strong and fierce and brave. I hope all of you - your father, your mother and you - are able to end this horrific journey in peace.

I’m so sorry for the worry and heartache this disease brings throughout and after. When my mom started to transition and actively die, hospice recommended quite a cocktail of meds to ensure her peace and comfort. It was a bit daunting since I was the one giving these to her around the clock, mostly every two hours. She was taking Ativan, Haldol and Morphine. She always seemed calm and relaxed. I hope you can feel your dad is at peace and not agitated.

YES! the administration every two hours for 8 days was very stressful for me. I actually vented largely here when we were going through it. I was very alone and had a notebook with columns and times when I dispensed the meds. I often felt confused and worried and why was I the one left with all the responsibility. Very little sleep or food and trying to recover from Covid and a bronchial infection. I’m glad you’re not totally alone and I feel deeply for you and your ma… your dad too. I hope you can find some peace, I’m really sorry!

Sorry pookabera, snooze when you are able.

@pookabera this is hard but it sounds like you all are keeping your spirits up. I recall a prior LOs transition time and she plucked and pulled at her sheets in final days. I think they called it pilling? Also, I will try to repost the Tam Cummings actively dying 1 pg tool which is insightful. (just linked it below; hope it helps)

I love your oxymoron. And yes, math slips with the sleep deprivation! Wishing you and your family strength, peace, and comfort for your LO as you help each other through this, and provide him with safe passage.

Also, I personally believe they absolutely are sometimes talking with visitors we just can't see. Its possible. There are many things we just don't know, or at least I don't - so who am I to put experiences in my own limited understanding of life and death? I'm convinced one of my dear aunts was communicating with someone's and it gave her great comfort and calm reassurance. That was a win in my book. I was in the room with her for 7 weeks after a massive stroke, including several of the "final days" until the very last when her pain got away from us as she was totally resistant to morphine. So we had to transport her to the hospice home for 2 days to give iv pain meds at that point.

But for 1-2 of those final weeks at home I experienced many of the things listed in the "actively dying" process that you are describing. Bless you all.

I'm glad you're able to be there with mom and that hospice is there daily now.

Hospice might have included medication for secretions in your kit. They can instruct you over the phone. The awake state may have been terminal restlessness. My friend was given sublingual drops initially for her mom, but nurse offered a patch instead.

I'm told the gurgling doesn't distress the PWD, but it can be hard for family members. I found I reacted viscerally to it and was told that was fairly common.

Thinking of you.

HB

Thank you for the update...

Thinking of you @pookabera

Some of the behaviors you describe were present with my sister -- plucking and pulling at the bed sheets, interacting with people who weren't there, and the irregular breathing. Her body temperature fluctuated a lot as well. The day before she passed, I touched her arm and she felt like she was burning up, but she wasn't sweating or anything like that. I removed the quilt and she cooled down a bit. I'm not sure if it helped her feel better or not.

Peggy didn't seem to be in pain, and hospice only gave her morphine once. They gave her another drug ... I'm blanking on the name but it starts with an "a" (not helpful, I know), but it's normally used as eye drops. In this case hospice used it to dry out the mucus and secretions. It really seemed to help Peggy.

Hospice gave me the little blue book to read - Gone From My Sight - The Dying Experience, it was helpful.

Finally I remembered the name of the drug -- it's atropine (to help with the rattling/gurgling).

@pookabera thanks for the update. Glad you got some rest. Hugs to you and your dear mom! My DH is not yet to this phase, but is 7a and having notable decline.

I, like you all, am still just going with the flow. Music (even instrumental music) and facial expressions are things he responds to, so I remind myself to smile, blow a kiss and wave even, if I'm across the room doing something when he appears to be napping. He has surprised me a couple of times by waving back (he was watching me) or speaking ("you look good, girl" - made me laugh out loud yesterday because I surely did not!). I thought, poor guy, his eyesight's going now too!

This actively dying phase is surely a twilight zone sort of experience. It was for me with another LO I supported through her in home hospice and actively dying period. She did not have dementia, and was able to say how pleasant some of her moments were. She laughed at her own hallucinations and told me the people she saw in the room and what they said. The music was clearly a comfort and all I learned is that we can just try to be there with them in the moment.

I feel like in these last moments the important thing is exactly what you are doing. I am already in the mode of trying to ensure comfort, lack of pain and that whenever they wake up they are not alone, whether one of us or a hospice team member, or another close someone is there. Just being with them.

We are here for you as well. Don't forget to breathe, stretch a bit, and stay hydrated, dear caregiver.