the long night
It's about 4:30AM here. My mom called me around 11 and I knew I needed to come over to keep her company and help.
I've read the hospice book and this forum and my books and all that for months now, but seeing this in real life is obviously different.
He might be in the actively dying stage now? Wasn't really expecting that so soon, and I could be wrong, but...
Hospice nurse was here today off schedule because I called to ask about pain management and when I told him we'd been giving dad morphine every three hours (with complaints of pain) since last night-ish. Nurse told me that he suspects this may be the beginning of the "actual demise" but I thought he meant like, a couple weeks. Will this go on that long? (Probably not?)
He's been exclaiming "I gotta go" and "You gotta get me off of here" for the past couple minutes.
Earlier when my mom had finally fallen asleep I could have sworn he was whispering to someone (whoever he thought was in the room).
I walked by and glanced in on him and I thought he waved at me so I went in and he was sort of gently thrashing (an oxymoron if I've ever written one) in bed and was plucking at the fabric of his pants. I tried talking to him but he didn't respond and I'm not sure he saw me.
I also feel like his breathing is different every now and then (some panting, some like, harder exhalations. Not sure I've heard any catching or gurgling but something is coming across as different.
We just gave him another dose of morphine and can give him more seroquel in a couple hours, so hopefully that will help him relax.
I guess if this continues into the morning I'll call hospice again to update them.
As always, thank you for reading and responding and helping us feel less alone in this. ❤️
Comments
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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!
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I'm so sorry. I'm glad you and mom have each other and hospice on board.
That "gentle thrashing" might be posturing which can happen towards the end. Sending you warm thoughts.
HB
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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.
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Thank you, we appreciate it! He did tucker himself out around 7am, so we all got a little snooze in this morning before we got up for work.
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Thank you ❤️ Reading up on posturing now.
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Thank you so so much for this. When my sister passed in 2018, I started saying "we can do hard things", your comment reminded me of that. I'm hoping that his upped seroquel dosage will help him feel more settled.
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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.
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I think that might be where we are now, we'll see how the rest of today goes. I went into work this morning (such an odd feeling. Honestly, I've mostly been skimming this forum today), but may be staying the night again if he gets agitated like he was last night.
And yes, administering the meds is a whole thing for us. I printed out a time chart for us to keep track of when we gave him a dose and when we can give him another. We were making each other laugh trying to do the math last night on our fingers, it was awful haha
I think my emotions are starting to catch up with me today (probably the lack of sleep messing with my compartmentalization lol) - but last night was truly a trip and a half. I'm glad he eventually settled down this morning. Mom says he's been sleeping since I left for work.
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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!
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Please keep us updated as often as you can...
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Update:
Just got off the phone with my Mom. She and our hired caregiver tried giving him a wash up and it did not go well. He tried to get violent (but a dying 83 year old who can't move his legs anymore wasn't throwing very good punches - sorry an attempt at brevity) and everything seems to cause him pain. He's had dermatitis on his head, face, and neck and his hospice nurse has been encouraging to wash him up when possible, which is why they tried at all.
She also said his legs are stuck in the position they're in now.
Having a minor emotional moment at work, but luckily it's spring break so no one's in my office suite other than one professor who never pays much attention to me anyway.
Going to pack up and head home and hopefully get some sleep in case my mom needs me again tonight. (Got pulled onto a work event tomorrow and found out I have to be there at 6:15am, which is wonderful and not at all atrociously early)
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ugh, pookabera - none of this is easy, and working on top of little sleep...
Please find some way to get some sleep and take care of yourself.
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Sorry pookabera, snooze when you are able.
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I'm so sorry pookabera. You must all be exhausted.
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@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.
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Hi everyone, thank you for all of your comments and support - we truly appreciate it!!
I spent the night again last night. Called hospice this morning to update and his hospice nurse is here now. Upped the morphine, added haloperidol (guessing at the spelling), maintaining seroquel.
Dad's been talking about having a BM this morning and been agitated, so nurse is going to try an enema only to see if it helps with agitation going forward.
Been a strange couple days.
Oh, work update: one of my co-worker's events were canceled so they were able to go to the 6:15am event instead of me (truly could not be more pleased).
I updated my team at work and they all basically told me to stop working and take today off.
Not sure how many days we have left but this is the final stretch.
He said my name for the first time in a while last night and gave me the heebie-jeebies. Went in to check on him but of course no conversation or coherence.
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Back again - After his hospice nurse left, things have been very quiet. Dad's been sleeping very deeply ever since (so more than 12 hrs) and we've been giving the trio of meds and managing those timings.
Until about 20 minutes ago. I'm sleeping in my mom's room with her and we have a baby monitor + the bedrooms are just across the hall from each other. All of a sudden he's "awake" and was talking and moving around in the bed. Not coherently, the same as he was the past couple days.
But it definitely scared the heck out of me. We've kinda thought that with these meds on board he'd be sleeping until he passed..
He's been clearing his throat and coughing a bit, but (fingers crossed and knocking on wood) his breathing is back to how it was earlier today. Spoke too soon - coughs are continuing.
Hospice is going to be visiting every day until he passes, and if the awake state continues I'll call to update them?
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Hi - you have a comfort kit? Ask them about the med that you can apply topically to just below his Adam's apple to help with secretions if needed. It can be disconcerting to hear the coughing and trying to get lungs and throat clear. Glad hospice will be there more frequently to support you.
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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
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Hang in there Pookabera.
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Thank you for the update...
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Thinking of you as well.
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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.
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Hi everyone, thank you for checking with the advice and support. I caught up on a few hours of sleep last night, so I'm more clear-minded. Another update as we wait through this period:
His hospice nurse made (what we're assuming) his last visit yesterday. Confirmed that my dad has entered the "actively dying" phase. We have him on a schedule of morphine, haloperidol, and seroquel. Which is a relentless cycle of alarms (each is on a different interval: 2 hrs, 6 hrs, or 8 hrs).
He's been resting comfortably and has only "woken up" a couple times in between doses. He's getting twitchier and his breathing has slowed down a lot (he's to 6-8 breaths per minute, I timed it a few minutes ago). I don't think he's any food since.. Tuesday? Wednesday? He stopped accepting food and water around then.
His nurse told us to anticipate him passing within hours to a couple days... and that because he has a stubborn personality it may be more likely on the "couple days" side of things.
We've been going back and forth on how we feel about talking to him. He's extremely hard-of-hearing, so really it would be more for us than him? I'm not sure if he's aware when we come into the room, sometimes he seems to twitch when we say something to him and his eyes are open a bit.. but really, how much awareness is there?
I'm sort of on the side of wanting to let him rest and be comfortable. I feel like with how far his dementia had progressed (plus his hearing) I'm not sure that even if he could hear me that it would make much sense to him.
Thinking a lot about who he was before the dementia, I keep getting glimpses of it throughout the days. We had a thunderstorm a couple days ago and reminded me of going to stand in the driveway with him to watch storms roll in. Even through the dementia he was excited to know me as an adult - wanted to know when I was going to have "a couple rugrats" and told me I'd probably be pretty good at it (motherhood and all that).
It's so strange to be at the point we've been waiting for (for him to be comfortable, at peace, and in the passing process) and for it to still be another waiting period.
I'm not really ready to deal with the depth of the feelings that are going to be happening but also don't have the energy to keep myself busy.
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It is a hard and strange phase of the long journey. Just being with your father quietly may be the answer of perhaps some soft music. My husbands " nurse" has a lovely contralto voice...she sang him into heaven. That has always been a comfort to me, The end came quietly....I then fell apart but i clearly remember feeling a tremendous sense of relief. Other have written about the relief felt and how surprising it was. Maybe it is more that the tension goes. I don't know.
Please update us when you can and give your mother a hug for me.
-Judith
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First, @jfkoc , my Mom appreciated the hug ❤️ I've been keeping her updated more on everyone's responses and well-wishes.
I keep thinking, "well things are gonna settle down until he passes," and then boom, surprise.
We thought he may have needed his Depends changed - but everyone time we move him he cries out, so we really didn't want to do that ourselves, honestly. He'd also started calling out/vocalizing more since 5:30 this evening.
So, we called hospice to check in and talk through things and figure out what needed to be done or not done. We agree to have a nurse come out.
Friends 🙂 The experience was not good for my nerves. Practically, it was necessary and I'm glad we had it. He was agitated and did, in fact, need to he changed into clean bottoms.
It was the experience of having someone who had sleeping for about 2-3 days be reacting very physically and verbally to being moved around. I'd imagine that in a hospital setting they would ask us to leave the room and then get him settled back down. My nerves are rattled!
I did get down on his level to rub his arms and try to comfort him and I helped the nurse lift him into a better position in bed.
We've got Ativan on board now to help with the restlessness and agitation and upped the haloperidol.
I was thinking we were at the "hours" point, but now I'm adjusting the idea we may still be at "days". Not that any of it is predictable.
As always, always, always thank you all ❤️
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Finally I remembered the name of the drug -- it's atropine (to help with the rattling/gurgling).
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Prayers for settled nerves and rest for all of you ❤️
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@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.
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Hi everyone, last update, I think.
My Dad passed a little bit ago. We're waiting for hospice to get here.
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