Anonymous
Post 03/07/2023 19:33     Subject: This is shaping up to be an awful death (vent)
I’m not the hugging type, virtual or otherwise, but I can offer OP a supportive nod
Anonymous
Post 03/06/2023 18:16     Subject: This is shaping up to be an awful death (vent)
Anonymous wrote:Hi; not really asking for advice here, but looking to vent. My father (90, widower) suffered a dramatic decline in health and cognition in the fall after living independently his entire life. He had to be cared for 24/7 and needed assistance with all activities of daily living. He uses a wheelchair and is completely incontinent and unable to feed himself. For a time, I had home health nurses coming in, but they proved too expensive (ca. 25,000/month through an agency for 24/7 care) and we were burning through his savings. I'm an only child and could not become his caretaker, as my family depends on my income and I have small children to care for. So, a nursing facility was the only answer.

He's suffered a further dramatic decline in cognition since making the move to nursing last month. He's miserable but can't tell me what, specifically, he needs. He's been diagnosed with bladder cancer and is on hospice. I visit every day, and I'm assured that the facility is taking good care of him. But every time I see him, he asks to die, asks for help with dying, says "I can't do this" and asks to go home, and so on. (There is no longer a home for him to go to: to pay for the facility, I've had to put his house on the market.) Every visit to him is a parade of terribleness.

I'm struggling with guilt, grief, horror, anger, the whole nine yards. Hospice has been of little assistance since he moved to the facility, too. It all feels like it's "on me": I have no siblings to vent to; I have to tuck the ugly emotions under my hat when I'm at home with my family and small kids; and friends don't really want to hear about the horror that end-of-life care can be. I just feel awful, and I'm feeling guilty about hoping this all ends soon. Anyone else been in a similar situation?
Yes, it’s a tough position to be in. Many, many of us have or will experience this end of life with someone close. It sucks. You have to be strong. I’ll say a prayer for you. Virtual 🤗 hug.
Anonymous
Post 03/06/2023 18:13     Subject: This is shaping up to be an awful death (vent)
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.


One of my dearest friends is going through this with a parent right now, in Australasia.

She's been forced to take the 'starve' route as there are no other options.
Anonymous
Post 03/06/2023 10:40     Subject: This is shaping up to be an awful death (vent)
Anonymous wrote:
Anonymous wrote:NP here with a question about Ativan from those who know more than I. My understanding is most facilities/doctors will not prescribe it unless the patient is bed-ridden because the drug makes the patient a fall risk.

Ativan (also called lorazepam) makes an agitated patient sleepy and complacent. Hospice will speak to you as though it’s a treatment for anxiety — which it does help with — but mainly, it’s used to stop patients from trying to get out of bed or pulling out catheters or IVs. It makes a difficult patient less difficult.


Hm not that it’s applicable to OPs situation since the parent won’t do VSED, but I wonder if Ativan makes a sustained commitment to VSED less likely
Anonymous
Post 03/06/2023 10:12     Subject: This is shaping up to be an awful death (vent)
Anonymous wrote:NP here with a question about Ativan from those who know more than I. My understanding is most facilities/doctors will not prescribe it unless the patient is bed-ridden because the drug makes the patient a fall risk.

Ativan (also called lorazepam) makes an agitated patient sleepy and complacent. Hospice will speak to you as though it’s a treatment for anxiety — which it does help with — but mainly, it’s used to stop patients from trying to get out of bed or pulling out catheters or IVs. It makes a difficult patient less difficult.
Anonymous
Post 03/06/2023 09:56     Subject: This is shaping up to be an awful death (vent)
Hey, OP -- thinking of you in Week 2.
Anonymous
Post 03/04/2023 05:17     Subject: This is shaping up to be an awful death (vent)
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.


+1 blunt but accurate
Anonymous
Post 03/03/2023 16:12     Subject: Re:This is shaping up to be an awful death (vent)
Hi OP - I understand what you are going through - btdt with both of my parents. Hang in there and know that you are not alone and that this will all be over relatively soon. Enjoy this time as much as you can - and as others have suggested just try to keep him as comfortable as possible with meds. Both my parents passed under hospice care - death is a process hospice providers underestand well and when he is close hopefully they will offer some morphine so he can let go - my mom passed the first night she took morphine about five weeks into her hospice care. She was SO ready - I was prepared and our hospice team was a great comfort - her time had come and so will your dads. Take care, and God bless.
Anonymous
Post 03/03/2023 15:09     Subject: This is shaping up to be an awful death (vent)
Anonymous wrote:NP here with a question about Ativan from those who know more than I. My understanding is most facilities/doctors will not prescribe it unless the patient is bed-ridden because the drug makes the patient a fall risk.


I think it's different for those on hospice (most of whom are not getting out of bed unassisted anyway).
Anonymous
Post 03/03/2023 13:48     Subject: This is shaping up to be an awful death (vent)
We just went through something similar with my MIL. My husband probably could have written your OP honestly. You are doing everything you can. Please know that. Please lean on your spouse and any friends who have gone through something similar. Go for a walk. Eat healthy, even if you are burning money to get healthy food. It's hell, but it feels like a common hell. And it's temporary.

Its been 6 weeks since she died and its only now that we are starting to get back to some semblance of "normal" - i.e. working a normal work week, exercising, eating healthy, sleeping 6 hrs a night. Watching someone die slowly is emotionally taxing, especially if you were deeply attached to them.

Anonymous
Post 03/03/2023 10:04     Subject: This is shaping up to be an awful death (vent)
NP here with a question about Ativan from those who know more than I. My understanding is most facilities/doctors will not prescribe it unless the patient is bed-ridden because the drug makes the patient a fall risk.
Anonymous
Post 03/03/2023 08:58     Subject: This is shaping up to be an awful death (vent)
Hey OP, you made it to the end of the week (even though days of the week are probably meaningless at this point).

You're doing a great job.
Anonymous
Post 03/02/2023 21:41     Subject: This is shaping up to be an awful death (vent)
Anonymous wrote:
Anonymous wrote:My mom is similar. She is not yet in hospice, but should be this week. She is total care, fully incontinent, bedbound, can't speak or express herself. She was ready to go months ago. I am going to tell them she's in a lot of pain, so hopefully they will give her enough morphine to end things. It is awful to watch.


I'm so sorry, PP. It is a truly awful thing to watch.

He's not in physical pain, just mental anguish. So they give him the occasional Ativan but can't give him morphine or anything truly heavy-duty. That will have to wait until physically he's a lot sicker.


He should be getting Ativan on a regular basis. Physical and mental pain are not separate. Please ask them to up his dosing of Ativan. There is no need for him to suffer emotionally. Social worker for the elderly whose mom died of dementia.
Anonymous
Post 03/02/2023 19:03     Subject: This is shaping up to be an awful death (vent)
Anonymous wrote:
Anonymous wrote:Is he eating and drinking OP?


Drinking, yes. Eating erratically: sometimes soup or those vanilla shakes. Before the most recent decline, he read an article in the Times about VSED and declared he could never do it.


I got my mom bakery fruit tarts, and maybe she'd only eat the perfect fruit on top... or rice pudding, mushroom soup from La Madeline was a hit. Meanwhile, I was plowing Chewish Deli bagels and ham and cheese croissants. Hope you can take care of yourself, too.
Anonymous
Post 03/02/2023 18:12     Subject: Re:This is shaping up to be an awful death (vent)

OP - Does the skilled nursing home have a doctor who comes by regularly to do an evaluation of your Dad for anxiety medication because he absolutely should have his agitation brought under control by appropriate medication if that i sone cause for his being upset. A doctor could also define if it is less anxiety/fear agitation and more physical pain. In that case morphine etc. should be administered at a level to provide relief. So just a suggestion to pursue both aspects as it may be some time in Hospice care. He is absolutely in the correct place where his daily physical needs can be taken care of and he can have the 24/7 staff checking. If he has any religious affiliation or might benefit, you might see if a chaplain could visit him weekly.

For yourself, if you have any access to some sort of emotional individual or group support through your employer or your health insurance, I would take advantage of it. This could be a long period of time so you need to do what is best to keep your health in good condition and able to care for your young children. Be open with DH about what time you might even need for yourself at times just for a break. If you have the opportunity for FMLA, use it perhaps in small amounts to spend a few hours with your Dad when he is apt to be cognizant and in good spirits.