Guardians and medication

[Tybee]

My mom has advanced dementia and today her doctor prescribed high blood pressure medication, as it has been getting higher over the past (unspecified) weeks, according to the nurse at the facility.

She has two guardians, a professional hired by the family and my brother, not the brother who is in charge of her money. Today the professional guardian asked the doctor to discontinue the medication. The facility nurse said it was prescribed to prevent a stroke.

My brother is saying we should go ahead with the doctor recomendation but the professional guardian is very "in charge" and will order things discontinued.

I have issues with this guardian who has sought to exclude me from medical decisions for Mom and denied Mom medical care in past. So that's a problem I have with her. But I have no legal standing now with respect to medical decisions.

I can also see her point about medication, but when I have requested hospice, palliative care only for her, I have been repeatedly shut down by both guardians and the facility. This doesn't make sense to me as this would seem to me what she is after here. But I do not think she wants to give up control.

I am creeped out by the way she takes charge and orders the doctors and nurses around--she has done it before, and facility has mentioned it to me, that she is abrupt and harsh.

What would you do? Do you think she is doing the right thing? I'm not a fan of going against doctor's orders, especially for philosophical reasons. But I am also a realist.

[rosarugosa]

Wow, that sounds like such a difficult situation, Tybee. It must be tough to feel so powerless to help your mother. What about you or your brother asking her what her rationale is, just so you can understand where she is coming from?

[Tybee]

I cannot because we have clashed big time over this when I have asked her in the past. I am wondering whether I should bring up the idea of hospice again, since this would seem to be a palliative-care only model.

[herbgeek]

We haven't gotten to that point yet, but mom will need to have the battery in her pacemaker replaced in the nearish future. My sister and I are of conflicted minds on that. Mom has little quality of life now, despite our best efforts. She has repeatedly said she wants to/is ready to die and be with my father. Do we artificially keep her alive? She would have died about 8 years ago without the pacemaker- she was weak and frequently fainting. Replacing the battery sounds like the "right" thing, but is it really? She has lost so much memory, and she just cries a lot because my dad isn't there to make the world make sense for her.

I'm wondering if maybe this is where your guardian might be at. She sound annoying as hell, but maybe she doesn't want to prolong a life of someone who isn't enjoying it? Does your Mom have a DNR with the facility?

From my understanding, one needs to have 6 months or less projected to live before entering hospice. Does she have a terminal condition in addition to the dementia?

[Yppej]

Assuming she did not have a stroke, what is her life expectancy given the dementia? Can she still do things like swallow?

I guess I would consider how near the end she is when deciding whether to try to prevent a stroke.

This has got to be so hard for you.

[iris lilies]

That sounds very difficult.

[Tybee]

Thanks, herbgeek and Yppej and Iris. herbgeek, yes, the guardian is of this mind, and Mom does have a DNR and a POLST, too. Only terminal condition is dementia and kidney failure, but supposedly the kidney failure is pretty typical for her age (?) No one will get her tested for numbers. When I asked, guardian said, what's the point?

I think her doctor thinks she has less than a year, and she can still swallow. But she barely eats. She sleeps a lot.

[Teacher Terry]

What a difficult decision. When my friend went on hospice in a nursing home the nurse said all medications are stopped. My friend’s cancer came back and I didn’t treat it as she had advanced dementia. However, if your mom had a stroke and it didn’t kill her it could make her physical condition much worse. The nurse said that the reasons behind stopping all medications is that patients are more at risk of falling. It didn’t make sense to me. Herbgeek, I’m your mom’s situation I probably wouldn’t replace the battery.

[Tybee]

However, if your mom had a stroke and it didn’t kill her it could make her physical condition much worse. ... . Herbgeek, I’m your mom’s situation I probably wouldn’t replace the battery.

Terry, that is what concerns me, too. herbgeek, I did not focus enough on your mom's issue until I read Terry's post. That is a horrible decision to have to make. I can see it both ways.

[iris lilies]

We haven't gotten to that point yet, but mom will need to have the battery in her pacemaker replaced in the nearish future. My sister and I are of conflicted minds on that. Mom has little quality of life now, despite our best efforts. She has repeatedly said she wants to/is ready to die and be with my father. Do we artificially keep her alive? She would have died about 8 years ago without the pacemaker- she was weak and frequently fainting. Replacing the battery sounds like the "right" thing, but is it really? She has lost so much memory, and she just cries a lot because my dad isn't there to make the world make sense for her.

I'm wondering if maybe this is where your guardian might be at. She sound annoying as hell, but maybe she doesn't want to prolong a life of someone who isn't enjoying it? Does your Mom have a DNR with the facility?

From my understanding, one needs to have 6 months or less projected to live before entering hospice. Does she have a terminal condition in addition to the dementia?
I read a book some years ago by a wife who regretted even putting a pacemaker into her husband’s chest. He was in the early to mid stages of dementia, as I remember it. That surgery alone knocked him down a couple of pegs on the functionality scale and he never recovered from it. So, it just prolonged a greatly diminished life.

Modern medicine does not always do us favors.

[iris lilies]

Tybee,

My question that follows is not the main issue because I agree with you that it sounds as though it is time for your mother to receive hospice care. The main issue is the care your mother is receiving, of course.

But this seems like such a confused situation to me. The hired-gun guardian is acting against the stated wish of the son who you call a “guardian?” I do not understand. WHO is the hired gun answering to? If she is paid, she is accountable to someone. Maybe she is accountable to your mother as a result if the court action?

I just cannot figure out this situation.

I assume the hired gun guardian is carrying out as she sees fit your mother’s “physician orders For life-sustaining treatment” plan ( POLST.)

If I were you, I would stay out of suggesting hospice. Her care team is well aware of hospice. Your suggestions seem to lead to interactions that bring you grief and unhappiness, so it’s not worth it IMHO because it is not as though you’re offering an idea they don’t know about. Hospice is well-known so they have to be considering it. Of course, I wouldn’t entirely discount the fact that your mother is a private pay patient at that facility, so there’s always that aspect, the financial aspect. Not pretty to contemplate.

[sweetana3]

My mother in law has absolutely refused a pacemaker. She is 89. Maybe not for the best of reasons but her heart is already so damaged, it likely would not do much except to revive her for a nursing home. Sometimes it is wise to refuse modern medicine.

My Dad was 92 and they wanted to do extensive open heart surgery. He refused. Then they found bladder cancer which is slow growing. In an attempt to remove or reduce it, the treatment killed him. Again sometimes modern medicine may not be the best option. Sigh.

[Tybee]

My question that follows is not the main issue because I agree with you that it sounds as though it is time for your mother to receive hospice care. The main issue is the care your mother is receiving, of course.

But this seems like such a confused situation to me. The hired-gun guardian is acting against the stated wish of the son who you call a “guardian?” I do not understand. WHO is the hired gun answering to? If she is paid, she is accountable to someone. Maybe she is accountable to your mother as a result if the court action?

I just cannot figure out this situation.

I assume the hired gun guardian is carrying out as she sees fit your mother’s “physician orders For life-sustaining treatment” plan ( POLST.)

If I were you, I would stay out of suggesting hospice. Her care team is well aware of hospice. Your suggestions seem to lead to interactions that bring you grief and unhappiness, so it’s not worth it IMHO because it is not as though you’re offering an idea they don’t know about. Hospice is well-known so they have to be considering it. Of course, I wouldn’t entirely discount the fact that your mother is a private pay patient at that facility, so there’s always that aspect, the financial aspect. Not pretty to contemplate.

The situation is clear cut as to authority--she has two co-guardians, one of whom is family and the other of whom is paid out of her estate. Both are court appointed now and have authority. The only ones they are accountable to is the court.

Prof guardian sent out email this morning to facility saying they disagree and will have to resolve it between the two of them and will then let facility know what they want.

And yeah, I have decided to keep my mouth shut and watch all this play out.

I think the facility just wants to follow good medical practice. There is not consensus really, on what that is, and doctor is the one who wanted the medication added. Brother tends to follow whatever doctor says; professional guardian tends to want no medical care for her. It's not a money thing. It's a principle with her;I imagine if we lived somewhere where euthanasia was practiced, that would be what she would request.

Frankly, it's disturbing, But I guess I see her point.

I think I would want to follow the doctor's advice, if it were my call, which it is not.

There are downsides to any medication, and I guess it might make her a fall risk? Or, it might slightly help her dementia with blood flow to hippocampus, according to the research I was looking at.

Regardless, this professional guardian is not going to research anything, it's a hard no, always.

[iris lilies]

I think you did a great job for your mother in getting her into a facility that you have confidence in.


Now it’s time for you to let go of the day-to-day worrying of care about your mom. Think about how she may be dying in the way that she anticipated: not eating, sleeping a lot – that is a gentle slow way to go. It is the the natural, inevitable end of life.

[happystuff]

Tybee, others have given some great advise and food for thought. I'm just sorry that you are still having to deal with such things. I hope everything ends well for your mom.

[Tybee]

I think you did a great job for your mother in getting her into a facility that you have confidence in.


Now it’s time for you to let go of the day-to-day worrying of care about your mom. Think about how she may be dying in the way that she anticipated: not eating, sleeping a lot – that is a gentle slow way to go. It is the the natural, inevitable end of life.

You are right. And I do really like the facility and I have full confidence in them. I like what you say here about how she may be dying in the way she wants--that is to be hoped for.

[Tybee]

Tybee, others have given some great advise and food for thought. I'm just sorry that you are still having to deal with such things. I hope everything ends well for your mom.

Thank you, happystuff.

[Teacher Terry]

I really hope your mom has a peaceful ending where she just slips away.

[rosarugosa]

I read a book some years ago by a wife who regretted even putting a pacemaker into her husband’s chest. He was in the early to mid stages of dementia, as I remember it. That surgery alone knocked him down a couple of pegs on the functionality scale and he never recovered from it. So, it just prolonged a greatly diminished life.

Modern medicine does not always do us favors.

I was talking with Mom today about how we would not take any medical steps to extend her life, but we want to do everything we can to prevent any unnecessary pain or discomfort for her. We are all on the same page (sister too), so that is a good thing and we won't have to guess about what Mom would or wouldn't want.

[SteveinMN]

Tybee, what a terrible situation!

I can't add to the advice already offered here other than to suggest that the appropriate course of action for your mother is whatever is the loving thing to do. We've had to look at this situation more than once in my family and it's tough -- and made all the more difficult by the panic of the moment when the need to do something is now. I wish you the best.

[Tybee]

Thank you, Steve. That is a great principle to follow-- do whatever is the loving thing to do.

For now, my brother convinced the other guardian to give her the medicine. And he called to tell me, which was huge progress in our relationship.

[Teacher Terry]

Great news about the medication.

[iris lilies]

This is tangential to this thread, but I will mention it because it’s at the top of my head:

Our close friends are in court tomorrow to “get custody “of their daughter’s SO who is lying in a coma. The man in a coma was not married to their daughter. Their daughter wants to run his health care decisions and wants “custody.”

The man’s parents are not putting up with this. They have decided which long-term care facility he’s gone to and they are not allowing the daughter to see him.

It is a SH*TSHOW.

[Tybee]

This is tangential to this thread, but I will mention it because it’s at the top of my head:

Our close friends are in court tomorrow to “get custody “of their daughter’s SO who is lying in a coma. The man in a coma was not married to their daughter. Their daughter wants to run his health care decisions and wants “custody.”

The man’s parents are not putting up with this. They have decided which long-term care facility he’s gone to and they are not allowing the daughter to see him.

It is a SH*TSHOW.

I think it fits in well with the thread. Are the friends seeking guardianship, or is their daughter seeking guardianship?

If they are not married, I doubt they will get anywhere, but maybe it depends on if they live together, own property together??

[sweetana3]

Iris L. I have heard and known of several stories like this. In one case the young man had AIDS in the very first years. His parents refused the SO any contact and the young man died. Made the news. The other case is a SO who was kicked out of the house by the parents of his partner. It has taken legal action to resolve the custody of several children we knew when one of the unmarried parents died or got sick.

I do not think they will get far as Tybee says.

[iris lilies]

I think it fits in well with the thread. Are the friends seeking guardianship, or is their daughter seeking guardianship?

If they are not married, I doubt they will get anywhere, but maybe it depends on if they live together, own property together??

I just got clarification: The daughter is seeking “conservatorship” (like Britney Spears) for health and finances.

They live together and own a house together with legal documentarian as to her ownership interests.

Our friends are involved because they are paying her attorney and also are acting as witnesses.

[Tybee]

I just got clarification: The daughter is seeking “conservatorship” (like Britney Spears) for health and finances.

They live together and own a house together with legal documentarian as to her ownership interests.

Our friends are involved because they are paying her attorney and also are acting as witnesses.

I think in Maine, as domestic partner, she would have precedence over the parents. In Maine, you get a guardian and a conservator--guardian is of the person, and conservator is of the money. A guardian can be both guardian and conservator. Don't know about your state.

[Tybee]

https://www.yourestatematters.com/conservator-guardian-missouri/

It sounds kind of like Maine.

[iris lilies]

https://www.yourestatematters.com/conservator-guardian-missouri/

It sounds kind of like Maine.

Interesting. Thank you.

[Teacher Terry]

That’s a mess IL. The couple should have done paperwork for this type of situation since they weren’t married.

[iris lilies]

That’s a mess IL. The couple should have done paperwork for this type of situation since they weren’t married.
Well for their major asset her parents insisted they have legal paperwork because the parents provided the down payment.

This afternoon it occurred to me that maybe in the long run it will be better that these two are not married for reasons I won’t go into and are speculative anyway.

[Teacher Terry]

The big issue I see is who is going to pay for his care and if he ends up on Medicaid they will want his part of the house. Money aside what a shame this happened to this young man.

[iris lilies]

The big issue I see is who is going to pay for his care and if he ends up on Medicaid they will want his part of the house. Money aside what a shame this happened to this young man.
That is a very good point. Here I figured his parents would be trying to grab any equity belonging to him in his house, but you are right that Medicaid will most likely come into play here.

[saguaro]

My Dad was 92 and they wanted to do extensive open heart surgery. He refused. Then they found bladder cancer which is slow growing. In an attempt to remove or reduce it, the treatment killed him. Again sometimes modern medicine may not be the best option. Sigh.

My Dad was diagnosed with esophageal cancer at 90. Had a mesh put in to help with swallowing, which he regretted doing. He debated between palliative care and treatment, decided to go with treatment. He died 3 weeks into the treatment regimen. He probably would have lived longer just having the palliative care, the treatment took so much out of him. So no, it is not always the best option.

@IL, sorry to hear about your friends' situation, what a mess.