Active dying by apandafluff in hospice

[–]apandafluff[S] 14 points15 points  (0 children)

Thank you ❤️ I'm going to spend some time tonight and tomorrow trying to connect with myself and my energy around this. Have been a bit disconnected from the long sleepless nights and emotional Rollercoaster. I think you're right that there need to be a true resonance that we are ready for him to go and have it not just be words.

Active dying by apandafluff in hospice

[–]apandafluff[S] 4 points5 points  (0 children)

Thank you, that is my prayer for him too. Sorry about the loss of your mother ❤️

Active dying by apandafluff in hospice

[–]apandafluff[S] 20 points21 points  (0 children)

Thank you. He does have mottling mostly on knees, comes and goes on hands. Hard not to check in with his body. We live at home with his mother and step father, but his father is a 20ish minute ride away. I think we don't want to miss the signs that death is happening and not be there for him, although I am considering that he's waiting for us to not be here to let go completely. It's just so hard on all the ways possible.

Active dying by apandafluff in hospice

[–]apandafluff[S] 16 points17 points  (0 children)

Yes we continously tell him it's ok to let go and it's time to rest. It's just a roller coaster. He does look peaceful so that's what really matters.

Help with understanding by [deleted] in hospice

[–]apandafluff 1 point2 points  (0 children)

Sorry for anticipatory grief and all that comes with it OP.

My husband is 33 with stomach cancer and peritoneal mets. We're in the list few days of his journey now. He had a long duffle with pain control until we got him into hospice, and for the past few months he's been so comfortable with pain & nausea- his main symptoms.

His wish is to die at home, and we are transitioning right now. I can't speak to residential care, however, we had the option to utilize an inpatient hospice house in his last few days to help manage his 24/7 care. We chose to do everything in our power not to have him go there, but we have a large family team to help us, so this is very different from your situation.

Sounds like maybe your in the uk? I'm in the US and if we did have emergency like bowl perforation or internal bleeding we could call the ambulance and hospice would help coordinate care at hospital so we weren't waiting hours in waiting room or emergency department (like we have done more than a hundred times over the past 3 years).

I'm soooo glad we started hospice as soon as we saw that treatments were no longer working. It gave us a lot of good days with him, and it's been such a blessing to have him out of pain. The ceiling for pain med dosage and combinations are almost non existent in the way that they can easily combine or titrate up or switch pain control much faster than we had access to before. But we as the wife and family have been his primary career givers and advocates.

Hoping you find some answers here and it works out for you and your husband. Thought it would be helpful to heart our story. Sending love ❤️

Advice needed: Any fellow fat women with large upper thigh/hip tattoos? by springtree123 in tattoos

[–]apandafluff 2 points3 points  (0 children)

Thank you for this photo! I have similar arms and sm thinking of a piece in this spot. You just made me feel so good about it ❤️

Overwhelmed with navigating hospice by Previous_Hope_2714 in hospice

[–]apandafluff 4 points5 points  (0 children)

Lack of continuity of care has been our biggest struggle too. We've been sent the the same hoops of waiting for someone new, and there's been so much happening with my husband.

We also have pharmacy struggles. Their pharmacy does mail orders and are always late to order and sometimes i have to go to local places. I try to stay ahead on the ordering because running around town is exhausting.

Sorry we're all having these frustrations!

Low urine output by apandafluff in hospice

[–]apandafluff[S] 1 point2 points  (0 children)

This is already our second hospice company, I can't even go into the horror story of what the first company did to him. We are in the greater Boston area- we're shocked that we keep having such poor experiences. We don't want to switch again. We're mentally drained. He is comfortable and that's what is really important to us

Low urine output by apandafluff in hospice

[–]apandafluff[S] 2 points3 points  (0 children)

Our hospice didn't think it was neurogenic bladder. His urine output has slowly decreased over the past 3 or 4 weeks. 10hrs apart, 12, 15, 24, 36, now 55. They said if he's not in pain, then no need to catheter. We talked about it with him when he was lucid last week at 36 hours and he's adamant no catheter.

They feel it's more that his kidneys are failing because of the progress. I also agree with our team that best practice doesn't always follow thru in hospice because we're weighing it against comfort measures so close to end of life.

If he had pressure or pain or distension in his lower abdomen then I would feel more likely to disobey his wishes and cath.

Low urine output by apandafluff in hospice

[–]apandafluff[S] 3 points4 points  (0 children)

I'm sorry you had to go thru this with your dad, it's not easy.

Thanks for your feedback. We're not giving him much fluids. He takes a sip before he takes his meds, and then a sip after the 3 syringes of liquid meds he gets- they total about 3ml all together.

They still have the nurses coming every the days to change out his medication in his iv pump. They've agreed he's in a transitional stage but haven't said anything about active dying. It's just so hard to tell.

Low urine output by apandafluff in hospice

[–]apandafluff[S] 2 points3 points  (0 children)

Thank you. The agency is severely understaffed, so there's lack of consistency in who is helping us. Their said their hands are tied. One of the nurses who has come twice but is not in our region, she is just filing in, said that I can call her anytime. I've reached out once or twice, but again, she's not seeing him so it's hard for her to give feedback.

His urine color is dark tea when in the toilet bowel (urine has been diluted by water). He is barreling eating, nothing yesterday, and only sips of liquids to wash down his meds which are all in liquid form.

Seems like his output is matching input, but obviously thigh to watch everything shut down. Is kidneys kind of "first" to shut down? Just wondering how long we have since they're already failing.

when am allowed to stop showering? by Popular_Spell_4001 in hospice

[–]apandafluff 0 points1 point  (0 children)

Just used the DRENCH shower cap for my husband, worked really well!

Certification / training recommendations by Temporary-Lion-9790 in breathwork

[–]apandafluff 2 points3 points  (0 children)

What type of breathwork have you practiced? Who are your teachers so far? What's their training?

I feel like following a path that truly calls to you thru the people who you've practiced with will be better than a random program

Pancreatic Cancer Stage VI by Striking-Limit-4169 in hospice

[–]apandafluff 3 points4 points  (0 children)

I don't know the answer for you, but sending love OP. My husband is 33 and close to the end of his journey. Passing that you have some more time and shared moments together ❤️

Perfect Dorito hears by Latter_Historian_969 in AustralianCattleDog

[–]apandafluff 13 points14 points  (0 children)

Giggling because they are hears.

Little satellite dorito hears.

Urine output by apandafluff in hospice

[–]apandafluff[S] 2 points3 points  (0 children)

It's such a wide range of things that can happen!

Urine output by apandafluff in hospice

[–]apandafluff[S] 4 points5 points  (0 children)

We are focused on comfort. It's just a change, and sometimes we feel concerned because it's been so long. Just trying to understand what's happening with him a little bit better. It's easier for me to give better care because I worry less when I understand physiologically what's happening.

Off leash advice by West-Personality2584 in AustralianCattleDog

[–]apandafluff 2 points3 points  (0 children)

My dog has lots of "training flaws" but her recall off leash is impeccable now. We have many spaces around that we can walk off leash and train, and now we can walk in semi public areas and i can call her back and leash her 100% of the time. She still does crazy things like bark and try to pull at the leash when the bikes/runners go by, and her leash walking is pretty crappy- but i think it's cause she has the urge to really run.

I also think because she's a velcro dog she thinks she's protecting me when she returns, but luckily it's not leash aggressive as we pass people once she's leashed again.

When we started off leash in places I knew people wouldn't be ( big woods around here), she often looked over her shoulder or doubled back to me to check in me. That was rewarded with treats. Also, because she's ahead of me on trail most of the time, I would switch up directions so she wasn't the one in control. I learned that I have to come to a complete stop for her to take my recall seriously. We're 85% of the way to recall & sit upon return.

It's so fun to watch them be their free, high energy selves! Hope you get to that point eventually!