This is shaping up to be an awful death (vent)

[Anonymous]

Anonymous wrote:Nice to live in Canada where we are vilified in the world media for allowing medical aid in dying for pretty everything now including the early stages of Alzheimer's. A kind, peaceful end of life giving us incredible peace of mind in old age. You will have PTSD after this. Unbelievable that they also ration out anxiety meds to dying people.

Follow the money, it's always about that. Your elder care industry makes a huge profit forcing people to pay for their own horrible deaths. I love the suggestion to starve and dehydrate to death as an alternative. It's actually a brutal way to go but keep your heads in the sand and do nothing to change your system.

What do you propose we do to change the system?

[Anonymous]

Anonymous wrote:Nice to live in Canada where we are vilified in the world media for allowing medical aid in dying for pretty everything now including the early stages of Alzheimer's. A kind, peaceful end of life giving us incredible peace of mind in old age. You will have PTSD after this. Unbelievable that they also ration out anxiety meds to dying people.

Follow the money, it's always about that. Your elder care industry makes a huge profit forcing people to pay for their own horrible deaths. I love the suggestion to starve and dehydrate to death as an alternative. It's actually a brutal way to go but keep your heads in the sand and do nothing to change your system.

Not OP but thanks for the helpful suggestions and support. Smug much?

[Anonymous]

OP here. I think the "pre-active" or "active" dying phase has begun - I'm unsure of the different between the two stages.

He is now on morphine as he appears to be in physical pain. He is drinking some water but cannot swallow very well and has choking fits when he tries: dysphagia, I assume.

Hospice tried to start him on oxygen but he repeatedly pulls out the cannula, so he's without oxygen now. Labored and irregular breathing.

He's lost a dramatic amount of weight and is likely below a hundred pounds now (at 5'7").

He can no longer speak, just mumble incoherently. He either sleeps or is passed out most of the time.

It's hard to watch all this, especially since I no longer know what he needs since he can't communicate.

I'm wondering if I should take leave from work - for how long, though? - and sit in his room at his nursing facility to ensure he's getting medication whenever he seems to be in pain. I think the morphine is sort of given during nursing rounds, but not when he's in his room alone. And he can no longer ring his nursing bell.

Anyway. I just wanted to provide an update since you have all been so sweet and supportive. I do hope this all ends soon: it will be guilt and grief and relief in equal measures.

[Anonymous]

I'm so sorry. I would at least try to talk to his doctors (not just the nursing staff) about wanting his morphine dose increased as well as his Ativan to ensure his comfort. I'd also ask about going NPO and going to comfort measures only like moistening his lips and mouth as the choking fits have to be awful when he tries to drink water.

[Anonymous]

Anonymous wrote:I'm so sorry. I would at least try to talk to his doctors (not just the nursing staff) about wanting his morphine dose increased as well as his Ativan to ensure his comfort. I'd also ask about going NPO and going to comfort measures only like moistening his lips and mouth as the choking fits have to be awful when he tries to drink water.

Right, they start him on "minimum" morphine dose and then assess to see how he does.

My main worry is just that his nursing home staff will come by every few hours, and if he's in active pain then, give him the morphine only then. I feel like maybe I should be sitting by his bed and demanding they supply the morphine whenever I see signs of pain, rather than not being there and relying on the nurses.

Unfortunately he also rejects mouth swabs. Sigh.

[Anonymous]

OP, I’m sorry. I’d probably take leave to be there if you can.

Play music he likes, talk to him if you feel like it.

Holding you in the light, as the Quakers say.

[Anonymous]

Anonymous wrote:OP, I’m sorry. I’d probably take leave to be there if you can.

Play music he likes, talk to him if you feel like it.

Holding you in the light, as the Quakers say.

Thank you, that's very kind. Alas, I can't take leave for at least the next several days - bad work drama is going on, and I have to be here to handle it (unsupportive supervisors).

He's completely deaf, so cannot hear my voice or music.

[Anonymous]

I'm so sorry OP. It does sound like the end must be near, and I'm glad you're in a place where you will be able to see that as merciful.

Know that you were there when it counted - when he was aware of your presence and could interact. It is ok if you can't sit by his bedside now. He is safe.

You probably can't prevent all pain, but he also may not be in the same kind of pain that it appears. Dying is strange and what seems upsetting for us may just be part of the process and maybe not as awful as we imagine. If he is beyond knowing you are there then please don't beat yourself up about having to keep your life on track.

Be candid w/ the staff at the facility also - do they have a social worker on duty? You could talk with them about what you are able to do and what you're most concerned about. For instance, hearing you say that your top priority is sparing any and all discomfort opens the door for a different conversation that just talking about how often he is checked on. A social worker or chaplain or hospitalist on the staff of the facility can really help with those conversations, and with letting you know that you are managing his care as much as possible.

[Anonymous]

I would talk to the doctor about "getting ahead of the pain." This could mean requiring the nursing facility to give regular doses of morphine and/or ativan every few hours, in addition to the "as needed" (PRN) doses.
Since you can't always be there, do you know anyone you could hire/ask to sit with him and make sure he gets the needed doses?
My mom just passed peacefully with the help of morphine, ativan, and good care.

[Anonymous]

Op, I don't know if you are on Tiktok but there is a user called hospice nurse penny who is SO informative. I'm an RN and have taken care of many end of life patients in my career. She has educated me and changed my practice with some of what she's spoken about. Her videos can be hard to watch as she does discuss some parts of the dying process but there is a lot of education that can be helpful too. For instance, at true end of life, drinking water is actually worse for the patient. Its a common misconception because it feels like you're being cruel taking water away, but its actually worse for the person to be drinking. Mouth care so he's not dry and all that is excellent, but actually drinking water isn't.

[Anonymous]

Anonymous wrote:Op, I don't know if you are on Tiktok but there is a user called hospice nurse penny who is SO informative. I'm an RN and have taken care of many end of life patients in my career. She has educated me and changed my practice with some of what she's spoken about. Her videos can be hard to watch as she does discuss some parts of the dying process but there is a lot of education that can be helpful too. For instance, at true end of life, drinking water is actually worse for the patient. Its a common misconception because it feels like you're being cruel taking water away, but its actually worse for the person to be drinking. Mouth care so he's not dry and all that is excellent, but actually drinking water isn't.

Oh and I'll also say I've worked with a lot of nurses who are scared to "over medicate". And when I say that, I mean their brain is telling them "patient is lethargic and non verbal, don't give morphine or Ativan" when in reality at that point the goal is to make them comfortable, and often times that means they will be more lethargic and less responsive. It is probably the top education I've done not only with nurses but also with family members. If they are moaning, feverish, moaning at touch etc, medicate. It is end of life care, we want them to go peacefully. I'm sorry for what you're going through OP.

[Anonymous]

Anonymous wrote:OP here. I think the "pre-active" or "active" dying phase has begun - I'm unsure of the different between the two stages.

He is now on morphine as he appears to be in physical pain. He is drinking some water but cannot swallow very well and has choking fits when he tries: dysphagia, I assume.

Hospice tried to start him on oxygen but he repeatedly pulls out the cannula, so he's without oxygen now. Labored and irregular breathing.

He's lost a dramatic amount of weight and is likely below a hundred pounds now (at 5'7").

He can no longer speak, just mumble incoherently. He either sleeps or is passed out most of the time.

It's hard to watch all this, especially since I no longer know what he needs since he can't communicate.

I'm wondering if I should take leave from work - for how long, though? - and sit in his room at his nursing facility to ensure he's getting medication whenever he seems to be in pain. I think the morphine is sort of given during nursing rounds, but not when he's in his room alone. And he can no longer ring his nursing bell.

Anyway. I just wanted to provide an update since you have all been so sweet and supportive. I do hope this all ends soon: it will be guilt and grief and relief in equal measures.

This sounds very similar to my 90 yr old mother's last days. Hospice was involved but she was at home. Her last two days were exactly as you describe although we were putting drops of morphine on her gums every hour. If you or someone else can stay there with him you could do that yourselves. She did not eat anything those two days, was also sleeping or mumbling with her eyes closed the whole time. It was difficult but I and my siblings were very glad to be able to be with her when she passed. I hope your dad's last days do not drag on and that you are able to handle it all.

[Anonymous]

Anonymous wrote:Op, I don't know if you are on Tiktok but there is a user called hospice nurse penny who is SO informative. I'm an RN and have taken care of many end of life patients in my career. She has educated me and changed my practice with some of what she's spoken about. Her videos can be hard to watch as she does discuss some parts of the dying process but there is a lot of education that can be helpful too. For instance, at true end of life, drinking water is actually worse for the patient. Its a common misconception because it feels like you're being cruel taking water away, but its actually worse for the person to be drinking. Mouth care so he's not dry and all that is excellent, but actually drinking water isn't.

OP here. I love Nurse Penny! Her videos have been so helpful.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Op, I don't know if you are on Tiktok but there is a user called hospice nurse penny who is SO informative. I'm an RN and have taken care of many end of life patients in my career. She has educated me and changed my practice with some of what she's spoken about. Her videos can be hard to watch as she does discuss some parts of the dying process but there is a lot of education that can be helpful too. For instance, at true end of life, drinking water is actually worse for the patient. Its a common misconception because it feels like you're being cruel taking water away, but its actually worse for the person to be drinking. Mouth care so he's not dry and all that is excellent, but actually drinking water isn't.

Oh and I'll also say I've worked with a lot of nurses who are scared to "over medicate". And when I say that, I mean their brain is telling them "patient is lethargic and non verbal, don't give morphine or Ativan" when in reality at that point the goal is to make them comfortable, and often times that means they will be more lethargic and less responsive. It is probably the top education I've done not only with nurses but also with family members. If they are moaning, feverish, moaning at touch etc, medicate. It is end of life care, we want them to go peacefully. I'm sorry for what you're going through OP.

It’s like bee pulling goddamed teeth to get the to adequately mediate. Minimal doses of Ativan. Lowest possible does of morphine. I had to twist their arm for Haldol. Meanwhile he’s writhing in air hunger and terminal delirium. They just don’t seem to give a s—t, hospice or facility nurses. I said at one point, “so this is just going to be a painful death” and they shrugged. Montgomery hospice sucks.

[Anonymous]

OP, what's happening now? It's been a while since any of us checked in.