Advanced Directive says to not give antibiotics

[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.

[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.

It's difficult to be the decision maker, but in this case, your parent made the decision. They trusted you to respect their wishes. You aren't "killing" them. You are giving them an opportunity to pass comfortably without pain. I think that's one of the kindest things we can do for our loved ones.

[Anonymous]

Anonymous wrote: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.

This is what happened to my grandpa too. He had Alzheimers and was getting frequent bladder infections. He fought against a catheter and the hospital visits were incredibly stressful for him. It was a relief when a doctor told my grandma she could opt to skip antibiotics and do palliative care instead.

[Anonymous]

Advanced stage is awful. Been there with a parent and other parent was refusing to follow directive and wanted to keep alive. It was torture until hospice finally convinced her to let him be loaded up with pain meds and comfortable as they removed supports. Respect your parents' wishes and follow exactly what is there. If you don't understand see if there is someone at the hospital who can help or ask a lawyer.

[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.

OP I could have written this except BOTH sibling and mom were refusing to follow directives and labeling me a killer. Before that, when dad was past middle stage dementia, mom was threatening to divorce him and becoming verbally abusive with burnout. I was labeled evil for pushing to have him put in memory care. He was so much calmer and more at peace there without being around someone who resented him. Low contact with both of them.

[Anonymous]

Anonymous wrote:

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.

So it sounds like the doctors will prescribe with documentation? If so, that means they can get antibiotics.