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

[Anonymous]

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?

[Anonymous]

I'm so sorry, OP. Perhaps there is a support group--even an online one--for people with family in hospice?

Even if you are not a person of faith, I would reach out to a chaplain, pastor or any spiritual leader you feel you can trust. My sister is a pastor and a chaplain who specializes in hospice support, and I know for a fact that she talks with people who are not Christian. So that might be an avenue worth exploring just to be able to talk to someone.

This also might be a time to seek a therapist; even therapy.com or something for some online sessions. Just someone to talk to.

I'm really very sorry, OP. You visiting your dad every day is the most and the best you can do. You may not feel it is "enough," but think about it: you do not have the means or the power to do differently. If you did, you would. So do the best you can, and see if you can find someone to talk to.

I'm so sorry.

[Anonymous]

Im so sorry OP. Not to be grim but medical aid in dying is legal in Washington Dc.
https://compassionandchoices.org/resource/states-or-territories-where-medical-aid-in-dying-is-authorized

[Anonymous]

Anonymous wrote:Im so sorry OP. Not to be grim but medical aid in dying is legal in Washington Dc.
https://compassionandchoices.org/resource/states-or-territories-where-medical-aid-in-dying-is-authorized

Alas, he’s in Maryland.

[Anonymous]

Op, I’m sorry. I watched my sibling die last year from a slow and painful death. She was bedridden, incontinent, and nonverbal the last few months. It’s awful. I friend so much when she died but I was also relieved she could stop suffering.

My employer let me take sick leave to be at the hospice - it was very helpful so that I had time to be there (also have young kids, worked full time, and am the primary caregiver for my kids). It meant I had some time to be present and say goodbye.

If your father seems agonized, perhaps he needs more medication? My sister would give these awful moans and we pushed the hospice doctor to give more meds. Unfortunately it meant she really never regained consciousness but also I felt like she was no longer suffering.

Wishing you the best.

[Anonymous]

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.

[Anonymous]

Is there any possibility of moving him to an apartment or rental, and having hospice nurses visit him? Hospice has gotten into a big business recently and I wonder if there is some mishandling occurring.

[Anonymous]

Anonymous wrote:Is there any possibility of moving him to an apartment or rental, and having hospice nurses visit him? Hospice has gotten into a big business recently and I wonder if there is some mishandling occurring.

Hospice doesn't provide 24/7 nursing care, which is what he needs. Were he to be in a private apartment/rental, he'd need a 24/7 nurse, and we'd be back in the same situation we were in before. Sigh.

[Anonymous]

OP, he is 90. He is dying. He is sick. Him not being happy/him wanting this to be over does not have to do with his care, whether it's optimal or not. It's not about the move. He asks to die because that is what he's ready for. It's common. It's horrible to watch, to have to watch but it is not at all unusual. Please know that you are doing everything right, and ordinary. It's not like you can make this much better.

Btw, I attended a seminar on the elderly that said, the common statement of, "I want to go home" does not mean what we assume. It's not a physical place. The elderly is expressing that they want things to be the way they use to be. They want to be who they use to be.

[Anonymous]

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.

[Anonymous]

Anonymous wrote:OP, he is 90. He is dying. He is sick. Him not being happy/him wanting this to be over does not have to do with his care, whether it's optimal or not. It's not about the move. He asks to die because that is what he's ready for. It's common. It's horrible to watch, to have to watch but it is not at all unusual. Please know that you are doing everything right, and ordinary. It's not like you can make this much better.

Btw, I attended a seminar on the elderly that said, the common statement of, "I want to go home" does not mean what we assume. It's not a physical place. The elderly is expressing that they want things to be the way they use to be. They want to be who they use to be.

OP here. That is such a helpful reframing! Thank you.

[Anonymous]

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?

I'm a hospice volunteer and what you are describing is not unusual. Dying can be very scarey for some.

Are there any volunteers at his hospice who could sit with him and take some of the emotional labour off you? Please take care of yourself too. If i were there I would sit with your dad and give you a break.

Likely the nursing staff are very busy - it's not that they don't want to help, they often just don't have the time, and with dying there can be a lot of complex family dynamics and emotions flying around.

Love to you.

[Anonymous]

Anonymous wrote:Is there any possibility of moving him to an apartment or rental, and having hospice nurses visit him? Hospice has gotten into a big business recently and I wonder if there is some mishandling occurring.

My experience with hospice nurses is that they visit once a week.

[Anonymous]

If he is on hospice and he is displaying signs of pain (saying “I’m in pain”, breathing fast, high heart rate, grimacing), he should be given morphine. If he still has the above signs after 15 minutes, he should be given more morphine. This should continue every 15 minutes until he is no longer showing signs of pain and should start back up as soon as he is. He should also have liquid lorazepam that should also be given every 15 minutes if he shows signs of anxiety. Hospice should either provide a person to administer these meds, or give them to you to administer.

[Anonymous]

I re read the thread and I missed something. Hospice is not for “the occasional Ativan.” He needs 2mg of it every 15 minutes until he is no longer in “mental anguish.” If possible, he can be coached on what to say to get the meds that will make this easier on him.