Advanced Directive says to not give antibiotics

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Why would you not respect their wishes?

Do you not understand how awful it is to be the person making the decision for them?

I'm sorry OP. I'm not PP but I do know how awful it is to have to make these decisions. But with the advanced directive, your parent already made the decision. You just have to honor it.

Thank you. This is helpful.

I was also thinking I could share the directive with others in the family because there are some mentally ill relatives who would say horrible things about me for following the directive.

OP

It is hard, and I have been there, but you made a commitment. If people are going to talk about you that can’t be your priority. If that’s kind of behavior, you’re expecting I would not share the advanced directive with them because they will just try to twist the words to mean what they want them to mean. Your answer to anyone who questions you is that you are acting consistent with your parents wishes and the advice of their medical team. Your sole focus at this point is the comfort of the parent who trusted you to take care of them when they could not take care of themselves. People need to get on the train or get off the tracks. Do not let them suck your energy.

[Anonymous]

Anonymous wrote:Advanced dementia is a terrible way to die. Its end stage based on your description. You eventually lose the ability to swallow and are likely to get painful bedsores from immobility. I would far rather die sooner of an infection than a lingering death from dementia.

Sad but true. Don't let them linger for your needs/wants. They cannot talk, they cannot go do the bathroom on either own, they are scared because they don't understand anything...

[Anonymous]

Anonymous wrote:I'm a social worker in a nursing home and I do advance directives daily. When discussing palliative care, families often choose no antibiotics because they have also chosen no labs, which can be painful. If we can't do labs to find out what infection is present, we can't give antibiotics for it.

You can give antibiotics. This isn't true.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Why would you not respect their wishes?

Do you not understand how awful it is to be the person making the decision for them?

I've made that decision. My dad died suddenly and unexpectedly because I followed his advance directives. It actually made mourning his death easier for me. I was glad I respected his wishes and knew I did right by him. And that brought me a sense of peace.

My sibling did not and my dad had a massive heart attack. The doctors said let him pass and my doctor sibling refused, made him go through surgery to have to be on a vent for two weeks before she agreed to let him go. They weren't close so it was about her, not him. His advanced directive said no life saving measures in these situations. Its a blessing not to suffer when you die.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I'm a social worker in a nursing home and I do advance directives daily. When discussing palliative care, families often choose no antibiotics because they have also chosen no labs, which can be painful. If we can't do labs to find out what infection is present, we can't give antibiotics for it.

You can give antibiotics. This isn't true.

It was true in our case. Assisted living did a test for uti. The lab did not come back so they sent parent to the ER, which dispensed drugs. In other words, assisted living doctor did not dispense antibiotics without labwork.

OP

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Why would you not respect their wishes?

Do you not understand how awful it is to be the person making the decision for them?

I'm sorry OP. I'm not PP but I do know how awful it is to have to make these decisions. But with the advanced directive, your parent already made the decision. You just have to honor it.

Thank you. This is helpful.

I was also thinking I could share the directive with others in the family because there are some mentally ill relatives who would say horrible things about me for following the directive.

OP

It is hard, and I have been there, but you made a commitment. If people are going to talk about you that can’t be your priority. If that’s kind of behavior, you’re expecting I would not share the advanced directive with them because they will just try to twist the words to mean what they want them to mean. Your answer to anyone who questions you is that you are acting consistent with your parents wishes and the advice of their medical team. Your sole focus at this point is the comfort of the parent who trusted you to take care of them when they could not take care of themselves. People need to get on the train or get off the tracks. Do not let them suck your energy.

Thank you. I do have an energy sucker for a sibling, so I appreciate this note.

The sibling will likely tell people I “killed” our parent. But do I care? Sibling has already suggested my mother and I killed my dad by allowing hospice when he had stage 7 dementia and would not eat. I got no end of sh-t and it was not even my decision as my mother was making the decisions for her husband.

The solution was and is to continue low contact with sibling.

This thread has really helped me. Thank you for all of your replies.

I feel a lot better about this, especially after one of you mentioned I am not deciding…that I am following the wishes of my parent. That’s true and I had not understood the situation that way before.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Advanced dementia is a terrible way to die. Its end stage based on your description. You eventually lose the ability to swallow and are likely to get painful bedsores from immobility. I would far rather die sooner of an infection than a lingering death from dementia.

Thank you. In the case when they had the infection in the past, the assisted living sent them to the hospital. By the time I arrived in the ER, treatment had been provided already.

Perhaps I need to remind them of what the advanced directive says and what her wishes are.

OP

In Maryland they have a form that you can complete based on your parent's advanced directive. It is called MOLST. I think other states have it. You can file that form with the hospital so that they are aware of their wishes. I would also recommend looking into hospice at this point.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Advanced dementia is a terrible way to die. Its end stage based on your description. You eventually lose the ability to swallow and are likely to get painful bedsores from immobility. I would far rather die sooner of an infection than a lingering death from dementia.

Thank you. In the case when they had the infection in the past, the assisted living sent them to the hospital. By the time I arrived in the ER, treatment had been provided already.

Perhaps I need to remind them of what the advanced directive says and what her wishes are.

OP

In Maryland they have a form that you can complete based on your parent's advanced directive. It is called MOLST. I think other states have it. You can file that form with the hospital so that they are aware of their wishes. I would also recommend looking into hospice at this point.

While, this is true. They couldn’t even find the form for my dad.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I'm a social worker in a nursing home and I do advance directives daily. When discussing palliative care, families often choose no antibiotics because they have also chosen no labs, which can be painful. If we can't do labs to find out what infection is present, we can't give antibiotics for it.

You can give antibiotics. This isn't true.

Our facility cannot. The doctors will not prescribe antibiotics without documentation, so they know which antibiotic to give. Maybe other facilities in other states are more lax.

[Anonymous]

Pneumonia was what finally allowed my dad with Alzheimers to die. Not only no antibiotics, no artificial nutrients or hydration either. If he had been able to swallow easily or allow anything by IV without becoming frightened and combative I guess it could have been a different story, but my mom followed his advanced directive and he died receiving measures for pain only (and anything he wanted to take by mouth, which wasn't much).

They were both retired doctors, OP, and my dad worked with a lot of older patients, so I think he had a pretty clear picture of what he wanted, and didn't want, when he signed his directive.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Why would you not respect their wishes?

Do you not understand how awful it is to be the person making the decision for them?

I'm sorry OP. I'm not PP but I do know how awful it is to have to make these decisions. But with the advanced directive, your parent already made the decision. You just have to honor it.

Thank you. This is helpful.

I was also thinking I could share the directive with others in the family because there are some mentally ill relatives who would say horrible things about me for following the directive.

OP

It is hard, and I have been there, but you made a commitment. If people are going to talk about you that can’t be your priority. If that’s kind of behavior, you’re expecting I would not share the advanced directive with them because they will just try to twist the words to mean what they want them to mean. Your answer to anyone who questions you is that you are acting consistent with your parents wishes and the advice of their medical team. Your sole focus at this point is the comfort of the parent who trusted you to take care of them when they could not take care of themselves. People need to get on the train or get off the tracks. Do not let them suck your energy.

Thank you. I do have an energy sucker for a sibling, so I appreciate this note.

The sibling will likely tell people I “killed” our parent. But do I care? Sibling has already suggested my mother and I killed my dad by allowing hospice when he had stage 7 dementia and would not eat. I got no end of sh-t and it was not even my decision as my mother was making the decisions for her husband.

The solution was and is to continue low contact with sibling.

This thread has really helped me. Thank you for all of your replies.

I feel a lot better about this, especially after one of you mentioned I am not deciding…that I am following the wishes of my parent. That’s true and I had not understood the situation that way before.

I’m glad you have more clarity and are feeling better. I know this is a difficult time and. I wish you whatever peace you can find.

[Anonymous]

Please seek hospice care. I'm sorry. The end is always very difficult is these situations.

[Anonymous]

I say this with love. Your parent is trusting in you to follow their last wishes. It’s a gift to them. Hugs.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Why would you not respect their wishes?

Do you not understand how awful it is to be the person making the decision for them?

I'm sorry OP. I'm not PP but I do know how awful it is to have to make these decisions. But with the advanced directive, your parent already made the decision. You just have to honor it.

+1. Your parent gave you a gift. I was with my dad who denied his terminal illness until the very end. When he lost consciousness, I had to make decisions without knowing what he would have wanted. To me, it felt like he had a chaotic death. To this day I am haunted by what happened.

I am sorry you are going through this.

[Anonymous]

We didn't give antibiotics to my dad when he got a bladder infection at the end. He was no longer even swallowing pills, so giving antibiotics would have required something more intrusive when he was otherwise able to lay peacefully in bed (no cathater, no IV, etc).

Very normal. Glad he had that in his advanced directive. I believe in ours my mom always had the authority to override the decision, but the default was no antibiotics.