Prayers for dh’s family please

[saraha]

But he can’t just go over and take her to the doctor. His sister has all the information and if he decided he was going to go and get her to take to the hospital, he would have to probably physically fight his dad is he didn’t want it to happen. I get what you are saying and for other things like holidays and ordering us around, that’s true. But sil is their financial poa and fil is still listed as mil’s medical poa. I mean if he wanted to fight his dad and load her into the car and take her to the E R I guess he can, but then fil can just refuse care

Edited January 8, 2023 by saraha

[saraha]

34 minutes ago, BusyMom5 said:

My opinion on this situation is that SIL, FIL and even the Dr are okay with her dying of CDiff.  They feel that by keeping her home, she can die a natural death in the comfort of her own home.  She has dementia, so can't voice anything differently.   

Maybe I just need to assume this is true. It would make things easier. I hate to think of her always feeling bad, but maybe she really just doesn’t know. I don’t know.

[bolt.]

Do you really think FIL would physically fight with your DH about taking her to an appointment? You've made him seem quite agreeable, socially and relationally -- even if he's stubborn about decision making.

Yes, I think if his father threatened to fistfight him, your DH would be off the hook as far as "doing everything he can" -- but I don't think not trying just in case an old man might hit his own kid in order to prevent a trip to the hospital for his ill wife... Well, I just mean that the existence of a fear that he might do that is not the same thing as trying it and seeing if he actually does.

It seems more likely (to me) that there would be verbal objections and FIL would have to be talked around but would probably eventually concede. If a fistfight seems more likely to you, I'll defer, of course, to your judgement. You actually know the man, after all!

[saraha]

3 minutes ago, bolt. said:

Do you really think FIL would physically fight with your DH about taking her to an appointment? You've made him seem quite agreeable, socially and relationally -- even if he's stubborn about decision making.

Yes, I think if his father threatened to fistfight him, your DH would be off the hook as far as "doing everything he can" -- but I don't think not trying just in case an old man might hit his own kid in order to prevent a trip to the hospital for his ill wife... Well, I just mean that the existence of a fear that he might do that is not the same thing as trying it and seeing if he actually does.

It seems more likely (to me) that there would be verbal objections and FIL would have to be talked around but would probably eventually concede. If a fistfight seems more likely to you, I'll defer, of course, to your judgement. You actually know the man, after all!

I see what you are saying

[Grace Hopper]

3 hours ago, saraha said:

I told dh I would call sil if he wants, or he can talk to her or whatever he wants. He said not to worry about it but let him know if Thursday lady/home health aid texts me

 

1 hour ago, saraha said:

Thursday lady texted and said she checked in and when sil said she was still having diarrhea she texted back info about getting her into rehab. 
 

 

Thursday lady needs to quit if she believes the care plan is inadequate. My guess is that SIL is an intimidating person and even the caregivers don’t want to cross her. 
 

34 minutes ago, saraha said:

But the things they say don’t match that. And if that’s true, why not tell dh and his brother?

Who’s gonna admit (by any word or action) that they’re okay with their mom dying due to insufficient treatment of a treatable issue? It’s not honorable. I also agree, though, that the doctor isn’t treating properly and that SIL and BIL have likely neglected to seek or accept info other than from the doctor. I wonder how much your small town situation has to do with things. 
 

I’m sorry things are the way they are. While I still don’t think you and your dh should jump SIL’s hoops for care coverage, I agree with l bolt that your dh could be a lot more vocal. 

[Harriet Vane]

1 hour ago, saraha said:

Maybe I just need to assume this is true. It would make things easier. I hate to think of her always feeling bad, but maybe she really just doesn’t know. I don’t know.

I’m confused about what you’re saying here. Are you saying mil really just doesn’t know because of dementia? Or that sil doesn’t know because sil is uninformed?

Sil said it all when she said they are doing all the doctors said to do. She definitely doesn’t understand—that may be through willful ignorance (ignoring what she was told) or that the doctor she is choosing to trust isn’t telling her. Or some combination. Either way, someone is going to have to tell her directly, loudly, repeatedly what she needs to know about mil’s physical condition.

If you’re pondering how much mil is aware of, dementia or not, c diff is painful. It is terribly painful throughout the abdomen. The messy accidents are increasingly painful as the whole system is raw and inflamed. And the fever and body aches. She may not have the words to express what she feels due to dementia, but she is definitely suffering.

I do not say this to hurt you, I promise, but to answer the question. 

It’s not fair and I am really, really sorry for the breakdown of the family and for yours and dh’s pain watching this happening to someone you both love so much.

[Mrs Tiggywinkle Again]

Coming from a small town(and dealing fairly often with farm families, even coming from one myself) I don’t really find any of this surprising.

I spent the first part of my paramedic career working in a town that had exactly two doctors and a band aid station hospital.  Neither doctor was up to date on anything and seemed to very often downplay things.  Families then downplayed them even more until crisis hit.  Part of this, frankly, was that even if they accepted the seriousness of some medical issues, it wasn’t like there was wide access to complex medical treatments or assistance anyway.  People didn’t seek second opinions because they trusted their primary docs and didn’t have the time to travel to a city for that second opinion anyway, especially in between milkings.

 SIL is right; she is following the doctor’s instructions.  The instructions are undoubtably to continue antibiotics and clean her up. I doubt that she is actually thinking it’s better to just die of c diff at home because I am 100% certain the doctor has not made this seem life threatening(probably because for most people, it really isn’t, but your MIL is compromised to start with).

Rehab might very well be a great thing, but I will also be blunt:  it’s just as likely that MIL will sit for far too long in a depends filled with diarrhea before anyone can either notice(if she cannot make her needs known) or has time to change her.  I cannot express how seriously understaffed almost everyplace is and the consequences that are spilling into the community as far as families struggling greatly with elder care.

 

[TechWife]

2 hours ago, bolt. said:

…

Which leads to an unwelcome and kind of prickly conclusion: your husband could be taking action for the good of his mom's health, but he is choosing not to in order to avoid conflict. He is putting his own emotional wellbeing above his mother's physical wellbeing, and I'm not sure that it's okay for him to be doing that. (Although it's totally understandable!)

This, I think, is the answer to, "Why is the outside caregiver angry with me and DH, we can't do anything." -- it's because a bystander can see a thing that you two really can't see from inside "the system" of this family. She can see that, yes, you two absolutely could be doing a lot of things, you just aren't.

DH-and-you are being ignored, but DH-an-you aren't taking any steps to genuinely change the situation... regular steps that any related adult can take on behalf of any elderly person. …

DH has equal power and equal responsibility with his siblings to take healthcare steps for his mom. He just has to be willing to put up with his siblings anger and objections. Which sucks. But it's not a reason for not meeting this responsibility. If he thinks she should go to a care home, he can call and make appointments, pick her up and take her there. If he thinks she needs to be back in the hospital, he can pick her up and take her in. If he thinks she needs to be seen by a specialist for c.diff. he can make some arrangements and make it happen. If he thinks she needs florastor he can drive to costco, buy it, and see that she takes it. He doesn't need to collaborate if collaboration isn't working. Let the other sibs be pissed off and out of *his* loop for a change.

This is not accurate. What you are proposing is medical care without informed consent and basically kidnapping. No one has a right to get medical care for another person without the appropriate legal channels being followed. He is not the next of kin, his farher is. Unless he has a medical power of attorney, he has no ability to do anything you are suggesting.

By way of information- some doctors will not see patients if the family is fighting internally about care. They will help families navigate decisions by providing information, discussing alternatives and making recommendations, but if there is real disagreement and no one is clearly the next of kin or power of attorney, they will discharge the patient from their service because that is dangerous for the patient and the doctor.

[Faith-manor]

18 minutes ago, TechWife said:

This is not accurate. What you are proposing is medical care without informed consent and basically kidnapping. No one has a right to get medical care for another person without the appropriate legal channels being followed. He is not the next of kin, his farher is. Unless he has a medical power of attorney, he has no ability to do anything you are suggesting.

By way of information- some doctors will not see patients if the family is fighting internally about care. They will help families navigate decisions by providing information, discussing alternatives and making recommendations, but if there is real disagreement and no one is clearly the next of kin or power of attorney, they will discharge the patient from their service because that is dangerous for the patient and the doctor.

This. If she has dementia, and fil has the medical POA, forcing her into a car against fil will is literally kidnapping in the U.S. I faced the same thing with my family when my father needed to be in a facility because my health and my mother's were in the utter toilet taking care of him. But mom had P.O.A once he was fairly non communicative with his cancer. I had zero rights in the matter, and my brother, the golden child, was controlling the strings. The only thing I could do was save myself, my marriage, and my health which at that point was tanking rapidly from dealing with the ongoing disaster.

[Carol in Cal.]

33 minutes ago, Faith-manor said:

This. If she has dementia, and fil has the medical POA, forcing her into a car against fil will is literally kidnapping in the U.S. I faced the same thing with my family when my father needed to be in a facility because my health and my mother's were in the utter toilet taking care of him. But mom had P.O.A once he was fairly non communicative with his cancer. I had zero rights in the matter, and my brother, the golden child, was controlling the strings. The only thing I could do was save myself, my marriage, and my health which at that point was tanking rapidly from dealing with the ongoing disaster.

Right.

I pushed a similar issue in my own family late last year, and I was EXTREMELY careful.  I got verbal consent from the patient to call for medical transport to the hospital AND I made sure that there was another family member hearing this conversation on the phone so there was a witness, and even so, and despite the fact that this literally saved a life, I was passionately and bitterly accused of wildly overstepping.  It’s very tricky to navigate these legalities.

[saraha]

I guess sil left the pc several messages trying to get another c diff test for mil and pc said she would call in another antibiotic and gave sil the number to an infectious disease doctor. So progress!

[Harriet Vane]

2 minutes ago, saraha said:

I guess sil left the pc several messages trying to get another c diff test for mil and pc said she would call in another antibiotic and gave sil the number to an infectious disease doctor. So progress!

I’m so glad!!!

If there is a way to follow the pulsed, long-term regimen I described earlier, that has the best chance at real recovery. I pray the new doctor can lead with better competence. Ideally sil will also trust that person. 

[KSera]

53 minutes ago, saraha said:

I guess sil left the pc several messages trying to get another c diff test for mil and pc said she would call in another antibiotic and gave sil the number to an infectious disease doctor. So progress!

I’m so glad to hear this! I hope they get her in immediately. 

[bolt.]

I apologize for my non-American perspective on healthcare decision making. Clearly it's more complex than I understand. I'm used to a system that treats patients (even patients with dementia) who present themselves at hospitals or clinics -- for whatever their presenting needs are. Nobody asks who transported them.

If anybody else turns up and says "Please don't treat them, I have a POA!" -- that might create a pause while the patient is stabilized and legalities are sorted out, but the pause would *definitely* include a social worker pointedly asking the question, "Why, exactly, were you hoping to deprive this person of medical care?" It would be very strange for a 'caregiver' to be actively opposed to someone receiving the medical care they have a right to receive, once they were already in a healthcare setting.

I also wasn't imagining, in the slightest, the use of actual force/kidnapping. My idea was more that turning up and using firm persuasion and not giving up easily would generally lead to a person (especially a person with dementia) yielding to an assertive approach from a loved/trusted family member. In my personal ethics, you can definitely be a bit of a bully if you think someone's life is in danger, and just stubbornly insisting for an excessive length of time can be effective too.

I guess it wasn't obvious, but, yes, I mean that such tactics would involve words only, and hands only as support or encouragement. I wasn't intending to advocate for fist-fighting the caregiver or wrestling the patient.

[TechWife]

1 hour ago, bolt. said:

I apologize for my non-American perspective on healthcare decision making. Clearly it's more complex than I understand. I'm used to a system that treats patients (even patients with dementia) who present themselves at hospitals or clinics -- for whatever their presenting needs are. Nobody asks who transported them.

If anybody else turns up and says "Please don't treat them, I have a POA!" -- that might create a pause while the patient is stabilized and legalities are sorted out, but the pause would *definitely* include a social worker pointedly asking the question, "Why, exactly, were you hoping to deprive this person of medical care?" It would be very strange for a 'caregiver' to be actively opposed to someone receiving the medical care they have a right to receive, once they were already in a healthcare setting.

I also wasn't imagining, in the slightest, the use of actual force/kidnapping. My idea was more that turning up and using firm persuasion and not giving up easily would generally lead to a person (especially a person with dementia) yielding to an assertive approach from a loved/trusted family member. In my personal ethics, you can definitely be a bit of a bully if you think someone's life is in danger, and just stubbornly insisting for an excessive length of time can be effective too.

I guess it wasn't obvious, but, yes, I mean that such tactics would involve words only, and hands only as support or encouragement. I wasn't intending to advocate for fist-fighting the caregiver or wrestling the patient.

I don't think anyone thought you'd use physical force, bolt 🙂.  Informed consent for treatment is a big deal here in the US and someone with dementia cannot consent because they are incapacitated, which is why it is important. Informed consent prevents unauthorized medical treatment and acts as a legal & financial protection for the patient, physicians & healthcare facility.

People who present themselves at an ED will receive immediate treatment in an attempt to preserve their life in an emergent situation. However, ongoing treatments require consent. If there is no POA in place, then the "next of kin" can consent in limited circumstances. If the person has dementia, though, there can be a lot of hoops to jump to establish legal guardianship and conservator-ship if there isn't an existing POA.

ETA: Someone with a POA doesn't routinely withhold regular medical care. They can make decisions about what treatment they prefer when there are options. A POA ensures that a person can access care and that the person with the POA will act in the best interest of the patient and in accordance with the patient's previously stated wished. Tthere are some circumstances in which there is a  DNR - "Do not resuscitate" order and if the patient stops breathing, they are not to be revived. This occurs with very elderly people and terminally ill people and requires certain criteria to be met, such as the agreement of the patient/POA & treating physician (sometimes more than one physician).

Edited January 9, 2023 by TechWife

[Mrs Tiggywinkle Again]

POA is often misunderstood as well.  If someone has mild dementia but can still tell me their name/address/where they are/how many quarters make a dollar/what’s going on, they can make their own medical decisions. Even when I think those medical decisions are unwise.

It comes into play often when a family member says but I have POA, I can make them go! And I have to explain that the presence of a POA only comes into play when a person no longer has capacity, no matter the reason, to make their own decisions. And the bar for capacity is fairly low.

Many people make POAs before they lose capacity and it includes language that says it only comes into effect when the person is unable to make their own decisions.

Family members can also often override a DNR, but that’s another frustrating story.

[saraha]

3 minutes ago, Mrs Tiggywinkle Again said:

POA is often misunderstood as well.  If someone has mild dementia but can still tell me their name/address/where they are/how many quarters make a dollar/what’s going on, they can make their own medical decisions. Even when I think those medical decisions are unwise.

It comes into play often when a family member says but I have POA, I can make them go! And I have to explain that the presence of a POA only comes into play when a person no longer has capacity, no matter the reason, to make their own decisions. And the bar for capacity is fairly low.

Many people make POAs before they lose capacity and it includes language that says it only comes into effect when the person is unable to make their own decisions.

Family members can also often override a DNR, but that’s another frustrating story.

Yeah, mil definitely cannot make her own decisions. She Can tell you her name and address but has no idea what is going, what the date is, the day of the week, and sometimes if it’s morning or evening. 90%of the time she is compliant, reasonable and smiles a lot. As long as she is not separated from fil. If he is gone for more than a couple of minutes she gets really anxious and the longer he is gone the more negative she becomes

[saraha]

@Mrs Tiggywinkle Again when you respond to an emergency dealing with a dementia patient who is with a caregiver, how do you know if they have a dnr? What if someone has one, but the person with the patient forgets or doesn’t disclose?

eta: and are they situational? Like there might be one on record at one hospital, but the patient goes to another?

Edited January 9, 2023 by saraha

[Mrs Tiggywinkle Again]

12 minutes ago, saraha said:

@Mrs Tiggywinkle Again when you respond to an emergency dealing with a dementia patient who is with a caregiver, how do you know if they have a dnr? What if someone has one, but the person with the patient forgets or doesn’t disclose?

eta: and are they situational? Like there might be one on record at one hospital, but the patient goes to another?

DNR’s only come into play when a person is not breathing/has no pulse.  My state has a MOLST which goes more in-depth which checkboxes, so it may say no CPR or intubation, but the patient wants non invasive breathing support like a Cpap/Bi-pap.  Or it may say limited medical interventions or interventions for comfort only, no antibiotics, etc.  I like it because it makes people really spell out their wishes.  Family is usually very up front that there is a DNR.  I did have one patient, dying of cancer, who literally had 9 copies of her DNR around the house and the daughter absolutely insisted we do CPR and then continued to insist that at the hospital. It was horrible but family can often override it.

people are generally instructed to keep their DNRs/MOLST forms in an easily accessible place.  We usually recommend taping it to the fridge.  We in my state need the physical form in order to honor it, so people are told to keep it at home and bring it to the hospital if they need ER treatment or hospitalization. 
 

In your MIL’s case I probably wouldn’t even ask about an official POA because I’d assume that FIL or a child who was present were making decisions for her. It usually goes to next of kin automatically even without a POA or healthcare proxy.

Point of my ramblings: please please discuss your end of life wishes with your family.

Edited January 9, 2023 by Mrs Tiggywinkle Again

[saraha]

7 minutes ago, Mrs Tiggywinkle Again said:

DNR’s only come into play when a person is not breathing/has no pulse.  My state has a MOLST which goes more in-depth which checkboxes, so it may say no CPR or intubation, but the patient wants non invasive breathing support like a Cpap/Bi-pap.  Or it may say limited medical interventions or interventions for comfort only, no antibiotics, etc.  I like it because it makes people really spell out their wishes.  Family is usually very up front that there is a DNR.  I did have one patient, dying of cancer, who literally had 9 copies of her DNR around the house and the daughter absolutely insisted we do CPR and then continued to insist that at the hospital. It was horrible but family can often override it.

people are generally instructed to keep their DNRs/MOLST forms in an easily accessible place.  We usually recommend taping it to the fridge.  We in my state need the physical form in order to honor it, so people are told to keep it at home and bring it to the hospital if they need ER treatment or hospitalization. 
 

In your MIL’s case I probably wouldn’t even ask about an official POA because I’d assume that FIL or a child who was present were making decisions for her. It usually goes to next of kin automatically even without a POA or healthcare proxy.

Point of my ramblings: please please discuss your end of life wishes with your family.

Can I pm you?

[Mrs Tiggywinkle Again]

Just now, saraha said:

Can I pm you?

Sure. I’m happy to help however I can.

[mlktwins]

53 minutes ago, saraha said:

@Mrs Tiggywinkle Again when you respond to an emergency dealing with a dementia patient who is with a caregiver, how do you know if they have a dnr? What if someone has one, but the person with the patient forgets or doesn’t disclose?

eta: and are they situational? Like there might be one on record at one hospital, but the patient goes to another?

My dad has one hanging in the living room near his favorite chair and one in his bedroom by his bed. They will need to see it.

Edited January 9, 2023 by mlktwins

[TexasProud]

 

1 hour ago, Mrs Tiggywinkle Again said:

DNR’s only come into play when a person is not breathing/has no pulse. 

Well, that wasn't the case with my mom.  When the ambulance came to get her, they specifically asked about the DNR and when my step brother said yes, she has one. They said, we need a copy.  Well, I knew she had signed one with hospice, but I was in New Mexico at that point and my poor step brother was trying to find it.  I think it took a good 45 minutes of them wrangling about all kinds of stuff and the DNR.  They couldn't just say.  They had to have a signed form.

So, if the person has a DNR, there needs to be a copy that is accessible. I had the POA on my phone.  I should have made sure I had her DNR on my phone as well.  Then I could have just text it to him. 

Edited January 9, 2023 by TexasProud

[Faith-manor]

1 minute ago, TexasProud said:

 

Well, that wasn't the case with my mom.  When the ambulance came to get her, they specifically asked about the DNR and when my step brother said yes, she has one. They said, we need a copy.  Well, I knew she had signed one with hospice, but I was in New Mexico at that point and my poor step brother was trying to find it.  I think it took a good 45 minutes of them wrangling about all kinds of stuff and the DNR.

So, if the person has a DNR, there needs to be a copy that is accessible. I had the POA on my phone.  I should have made sure I had her DNR on my phone as well.  Then I could have just text it to him. 

It depends on each state. In some states, the DNR is never in effect if EMS is called because the state law is that paramedics do not have enough legal training to interpret the POA/DNR, and they shouldn't waste time trying. 

50 states, and probably 50 ways it get handled. Sadly, we have exactly zero consistency on anything in these country! It is just so bizarre compared to other nations.

In likelihood, Tiggy was speaking from her experience as a medic with the laws of her state. OP's husband probably needs to talk to the legal department of the local hospital who can help him understand how this plays out in their state.  

[TexasProud]

12 minutes ago, Faith-manor said:

It depends on each state. In some states, the DNR is never in effect if EMS is called because the state law is that paramedics do not have enough legal training to interpret the POA/DNR, and they shouldn't waste time trying. 

50 states, and probably 50 ways it get handled. Sadly, we have exactly zero consistency on anything in these country! It is just so bizarre compared to other nations.

In likelihood, Tiggy was speaking from her experience as a medic with the laws of her state. OP's husband probably needs to talk to the legal department of the local hospital who can help him understand how this plays out in their state.  

Yes, should have added that as that was part of my point.  Definitely check. But I also think it never hurts to have documents readily available.

[Grace Hopper]

1 hour ago, TexasProud said:

 

Well, that wasn't the case with my mom.  When the ambulance came to get her, they specifically asked about the DNR and when my step brother said yes, she has one. They said, we need a copy.  Well, I knew she had signed one with hospice, but I was in New Mexico at that point and my poor step brother was trying to find it.  I think it took a good 45 minutes of them wrangling about all kinds of stuff and the DNR.  They couldn't just say.  They had to have a signed form.

So, if the person has a DNR, there needs to be a copy that is accessible. I had the POA on my phone.  I should have made sure I had her DNR on my phone as well.  Then I could have just text it to him. 

Agreeing that it can change a treatment plan. When in a SNF, one of my elders had what was considered an emergency and I was called to meet them at the ED. By the time I got there a CT scan had already been done. I asked the physician if they’d sent along a copy of patient’s DNR statement. The doctor was surprised and said no, it wasn’t in the patient info that was sent with, and said knowing that  that he would cancel the MRI he’d just ordered (because any treatment of what he might expect to see on the MRI would be declined based on the DNR).

But @TexasProudfor our elder who had hospice at home, the hospice agency plastered the walls and stickered the phones with bright orange instructions that the patient had a DNR and that 911 was not to be called. The emergency call was supposed to be made to the 24-hr hospice emergency number instead. 
 

The Nursing Director at the SNF got a serious piece of my mind when I went in to discuss this with them. Every healthcare provider has to operate on a cya basis these days, so I can’t always fault a provider. It just makes clear that every patient (especially an elder) needs an advocate.
 

I’ll add, too, that often patients with dementia that could not live safely in their own can hold themselves together well enough to seem competent to someone only spending a few minutes with them. 

Edited January 9, 2023 by Grace Hopper

[Faith-manor]

56 minutes ago, TexasProud said:

Yes, should have added that as that was part of my point.  Definitely check. But I also think it never hurts to have documents readily available.

Absolutely! You just never know when you need them, and who will need to see them! It is too much for the average non medical, non legal person to keep up with!

[TexasProud]

15 minutes ago, Grace Hopper said:

 

But @TexasProudfor our elder who had hospice at home, the hospice agency plastered the walls and stickered the phones with bright orange instructions that the patient had a DNR and that 911 was not to be called. The emergency call was supposed to be made to the 24-hr hospice emergency number instead. 
 

 

Our hospice nurse advised us to go to the ER as long as they didn't keep her.  Her ascites bag connection was leaking all over the place. It was soaking her bed. The nurse had been out there earlier in the day.  She said we could either just try to patch it or have her go to the ER. 

[LifeLovePassion]

In MN mom had a POLST. It was copied on bright yellow paper and hung on the fridge, we also have copies out several times when she was seen various places. 

[saraha]

I have had it with the lot of them, dh included. I’m just going to spend all my researching, link sending, talking to caregivers energy to praying and that is it. 

[LifeLovePassion]

I'm sorry, Sarah. You have been placed in a difficult position (and DH). You guys have been doing amazing under all the pressure. Absolutely no guilt in holding your boundaries. 

[fraidycat]

Big hugs. 

[BusyMom5]

That sounds like a healthy approach.   Hugs!

[Anne]

(((Saraha)))

[Mrs Tiggywinkle Again]

22 hours ago, TexasProud said:

 

Well, that wasn't the case with my mom.  When the ambulance came to get her, they specifically asked about the DNR and when my step brother said yes, she has one. They said, we need a copy.  Well, I knew she had signed one with hospice, but I was in New Mexico at that point and my poor step brother was trying to find it.  I think it took a good 45 minutes of them wrangling about all kinds of stuff and the DNR.  They couldn't just say.  They had to have a signed form.

So, if the person has a DNR, there needs to be a copy that is accessible. I had the POA on my phone.  I should have made sure I had her DNR on my phone as well.  Then I could have just text it to him. 

If someone is seriously ill I always ask about the DNR because the hospital will want it and I want to be able to honor their wishes. I just need a physical copy. Obviously we’ll transport someone without one but I always ask.

I could not use a picture of a DNR on someone’s phone here. It has to be a physical copy(there are some ways around this—I could call my medical control doctor and get their authorization not do anything, but many times they’re hesitant to give that).  
My grandmother had her doctor sign three copies of the MOLST/POLST form and she has one on her fridge, one taped above her bed and one in the bathroom.  The more copies the better.

CPR is valuable is some cases, like Damar Hamlin.  The vast majority of the time it is futile, traumatic and leaves the family with painful memories.

[saraha]

So a little update in case you’re curious.

Mil doesn’t seem to be having any more issues with diarrhea. The new aid was supposed to start last week so they had let the other three ladies go. She was only able to come three days last week and hasn’t been there yet this week. So sil is scrambling and I guess asked my friend to go over yesterday. The aid told my friend, who told me, so I told dh 🙄, that she (the aid) is having a hard time because she doesn’t know what to do with mil all day, mil just sits and stares at her. My friend (who knows this girl well) suggested sil make a schedule for her with daily/ weekly activities and jobs to do, as she’s only 20 and the only job she has had was at a nursing home where they told her what to do all day long. She has only been married/out of the house a little over a year so isn’t established in household running routines. She also apparently doesn’t know how to cook, so is also struggling with that aspect. I guess after the first two days of her cooking he used the free time without mil to go out and pick up food at a restaurant and leave it in the car til she leaves and then they ate that for dinner 🤦‍♀️. Nephew has been filling in the gaps as far as sitting with mil while fil feeds when the aid can’t be there. I don’t know what they are eating on those days. I did take over several helpings of meatloaf and sides Thursday, so I know they had a couple of meals there, and there was some canned soup in  the pantry so 🤷🏼‍♀️

I haven’t met her and friend wants me to sort of go over and introduce myself and offer up that I have been doing a lot of their cooking for years if she needs any menu suggestions or help organizing a menu plan. Dh was not sure how he felt about that but I said I wouldn’t mind. He’s frustrated that people keep coming to me instead of sil (my friend, the nurse lady who let me have it at the bowling alley) and said the aid needs to talk to sil. Which is true I think, but no one likes sil, and at 20 I would not have had the confidence to tell my boss I needed help/didn’t know what I was doing. She’s good at getting mil up, showered and does her exercises with her, but once they go through all that, the aid doesn’t seem to know how to spend her time or engage mil. She’s just young and inexperienced. I feel kind of sorry for her, she has missed 5 days out of 8 so far with a funeral and her babies getting sick. They are twin premies who are 4 months old now. I want this to be successful for everybody, but it’s not really my job to make sure it is. And that is hard. Dh says sil hasn’t really followed up with the aid and he’s not sure he’s going to mention what friend told me.
 

Honestly, I think if the aid doesn’t want to talk to sil, but is confiding in friend and friend is concerned, then friend should show her how to make a menu plan so someone can grocery shop and help her develop a routine. But 🤷🏼‍♀️

[Grace Hopper]

So y’all are expecting the aide to do scratch cooking? And provide day-long activities for MIL? No wonder she’s overwhelmed and bailing. 

SIL should come up with a schedule of activities, seems like that would be helpful. And provide supplies (ie, watercolor paints, simple games, large-piece jigsaw puzzles, videos she likes).
 

But ime the most an aide should be expected to do wrt food prep (unless you are paying her A LOT) is to plate up already cooked food and help make sure the patient eats. I mean, maybe fix a scrambled egg or cup of soup, very easy things. But full meal cooking? Is she expected to plan the menu and make a grocery list, too? Or cook based on what she finds in the fridge? Was scratch cooking whole meals clearly communicated to her as part of the job description? Did the other helpers do full meal cooking?

 

eta glad to hear her bathroom issues are better!

Edited January 25, 2023 by Grace Hopper

[Harriet Vane]

I was curious how it's going. I appreciate the update and I'm so very glad that her health is better. 

I will admit, it IS hard to know what to do with a dementia patient. This might be an easy thing to help with since it's a once-or-twice kind of conversation. 

For a little while, preschool types of activities may go well. Someone should tell the aid that MIL will likely have an attention span of 10-15 minutes IF the aid is there helping keep her focused. If MIL doesn't want to engage, that's okay. Just do something else.

For example: Sorting colored counters or loose change. Putting alphabet magnets in order on a metal tray (expecting only the first few to be in order but MIL might simply enjoy placing the familiar letter shapes randomly). Coloring with crayons or markers. Writing names. Tactile activities like play dough (or bread dough) or a big bowl of uncooked beans with some measuring scoops. And so on.

The other thing I have done is sit and sew "together." I do the sewing (embroidery, cross stitch, whatever) and the other person sits companionably nearby. We chat a little. I show the person what I'm doing. When I have something to do with my hands, often the other person is quite content just sitting there. 

My MIL liked being asked to help with housework. She could "sort" socks for a solid 30 or 40 minutes, LOL. Same with folding laundry. I would just set a small pile of wash cloths in front of her and she would happily fuss and fold them for a while. She also liked wiping things (counters, tables). 

My grandmother loved cutting paper. She would literally sit there--honestly, for hours--cutting colored paper into confetti. She also liked sorting paper into piles. We gave her junk mail and random business-like papers (like letters or stuff destined for the recycling container) and she would "sort" it. Then we'd jumble it back up for sorting on a different day. 

My aunt (brain tumor) loved doing all the same things she'd always loved, but simpler. She liked typing and she liked putting on makeup. She loved playing piano and kept those skills far longer than we ever thought possible. Even when she could no longer really play, she'd sit there and try. She had always loved fashion and dressing up, so sometimes when we were desperate we'd "clean out her closet." Honestly, it was just taking things out and then putting them back in the closet "in order." 

My father-in-law was a little harder to amuse. He had always been fairly sedentary. He liked helping set the table or unloading the dishwasher (with lots of direction). He loved football and World War 2 documentaries, so we recycled many, many old games from Youtube and many Netflix documentaries. My mil enjoyed nature documentaries, too. Both mil and fil were eager to take a short walk most days. 

I told my kids that when I have dementia, they should let me watch Mr Rogers Neighborhood every day, LOL. He speaks slowly and gently. They're available on Amazon. 

Just some ideas. 

[Harriet Vane]

I think we can all agree it was silly to let the other three aids completely go. MIL will need more and more care, and one caregiver is not enough. But they can cross that bridge when they get there. 

Also--it's completely acceptable for the aid to NOT work every second. She's getting paid a basic babysitting rate, so that's really all anyone can realistically expect.

[Grace Hopper]

27 minutes ago, Harriet Vane said:

I was curious how it's going. I appreciate the update and I'm so very glad that her health is better. 

I will admit, it IS hard to know what to do with a dementia patient. This might be an easy thing to help with since it's a once-or-twice kind of conversation. 

For a little while, preschool types of activities may go well. Someone should tell the aid that MIL will likely have an attention span of 10-15 minutes IF the aid is there helping keep her focused. If MIL doesn't want to engage, that's okay. Just do something else.

For example: Sorting colored counters or loose change. Putting alphabet magnets in order on a metal tray (expecting only the first few to be in order but MIL might simply enjoy placing the familiar letter shapes randomly). Coloring with crayons or markers. Writing names. Tactile activities like play dough (or bread dough) or a big bowl of uncooked beans with some measuring scoops. And so on.

The other thing I have done is sit and sew "together." I do the sewing (embroidery, cross stitch, whatever) and the other person sits companionably nearby. We chat a little. I show the person what I'm doing. When I have something to do with my hands, often the other person is quite content just sitting there. 

My MIL liked being asked to help with housework. She could "sort" socks for a solid 30 or 40 minutes, LOL. Same with folding laundry. I would just set a small pile of wash cloths in front of her and she would happily fuss and fold them for a while. She also liked wiping things (counters, tables). 

My grandmother loved cutting paper. She would literally sit there--honestly, for hours--cutting colored paper into confetti. She also liked sorting paper into piles. We gave her junk mail and random business-like papers (like letters or stuff destined for the recycling container) and she would "sort" it. Then we'd jumble it back up for sorting on a different day. 

My aunt (brain tumor) loved doing all the same things she'd always loved, but simpler. She liked typing and she liked putting on makeup. She loved playing piano and kept those skills far longer than we ever thought possible. Even when she could no longer really play, she'd sit there and try. She had always loved fashion and dressing up, so sometimes when we were desperate we'd "clean out her closet." Honestly, it was just taking things out and then putting them back in the closet "in order." 

My father-in-law was a little harder to amuse. He had always been fairly sedentary. He liked helping set the table or unloading the dishwasher (with lots of direction). He loved football and World War 2 documentaries, so we recycled many, many old games from Youtube and many Netflix documentaries. My mil enjoyed nature documentaries, too. Both mil and fil were eager to take a short walk most days. 

I told my kids that when I have dementia, they should let me watch Mr Rogers Neighborhood every day, LOL. He speaks slowly and gently. They're available on Amazon. 

Just some ideas. 

Great ideas! My mom also liked to fold small towels. She also liked to dress/care for  baby dolls, sort out her (costume) jewelry, put on makeup and have her hair brushed (and even liked a wash and set/style even to near the very end of life). 
 

A bird feeder right outside an accessible window is also an entertainment. 
 

 

Edited January 25, 2023 by Grace Hopper

[Innisfree]

All the activities @Harriet Vane mentioned are good. Things like folding laundry, watching tv, and listening to music worked here. If you (or someone) can, finding some music from MIL’s teen or young adult years might give her a lot of pleasure.

Family members would need to facilitate this, but another thing my mother enjoyed was going through old family photos. We had a big box of them that needed labels. Lots of them were people my mom could still identify, so that was helpful for both of us. I wouldn’t have wanted an aide to do that, but once pictures are identified, putting them in fairly small albums that MIL can handle easily would let her look at them. An aide could ask her about the pictures, or if MIL isn’t interested in talking, could just look at them with her and comment a bit: “What a cute little girl! That’s your niece, Betsy, isn’t it?”

A bird feeder easily seen from MIL’s favorite seat might be good. That was a favorite here.

Depending on how aware MIL is, she might get comfort and pleasure from a specially designed baby doll. You can get some made to mimic the size and weight of a baby. Some people love them; my mom just looked at it and said it was a doll, and wasn’t interested, but for some, taking care of the baby becomes an important activity.

Not every moment needs to be occupied. Several each day would be good, though.

ETA: Putting this out there for others reading along, more than necessarily the OP. The feasibility will vary enormously between families, and it wouldn’t be suitable for many. The whole family would need to be committed for the long term. But my mom loved the old dog we adopted for her. That dog was the absolute perfect companion, and the perfect fit in the household. She was a golden retriever mix who had been at the shelter for a long time because she had skin problems that needed treatment, and she was nine or ten years old. Her hips were bad, so she didn’t jump on anyone or get on counters. She was as sweet as she could be, gentle with everyone. Her skin cleared up with treatment. She followed my mother from room to room, and loved to be loved. She lit up my mother’s life. Six weeks after my mother died, her dog’s hips finally gave out, and the vet said it was time to let her go, but they had both enjoyed several years together.

Obviously this isn’t for everyone. We had a family who all loved animals and were available to care for the dog, and an accessible fenced yard. My mom was in better health than the OP’s MIL at the time we adopted the dog. We were happy to continue looking after the dog for years longer if it had worked out like that.

An alternative might be to find a therapy dog group that would bring a dog for occasional visits.

Edited January 25, 2023 by Innisfree

[saraha]

They offered her $12 but she said she wouldn’t do it for less than $16 which sil was very unhappy about but since she was literally the only person who offered to do it, she didn’t have a choice. I have no idea what sil has told the aid what her jobs are. All I know is what fil and friend told me.  Poor thing, I guess she asked fil what to cook and he said whatever. There is a beef out in the freezer( we raise our own) so she went out, grabbed four filet minion and put them in a crockpot with potatoes and carrots and a lot of salt. Like she literally doesn’t cook, shes been a full time working wife now mom since she moved out and got married and they always ate sandwiches or eat out so I’m told, which, no shame, just that she is unprepared for the job she is doing. I think the expectation was that she would come in, take care of mil, cook and run the house from what dh says.

Fil was telling me about her cooking when I went over Thursday with their dinner. They were eating the filet minion, and I was surprised they were already eating. I asked who cooked and he laughed and was telling me the poor girls attempts. I guess no one had any kind of plan so she was just opening the fridge and trying whatever. All she wrote on the grocery list was potatoes and carrots. Sil texted Saturday wanting to know if anyone had done their shopping (none of us have ever done their shopping before so not sure why we’d get a wild hair and just do it) so she picked up some groceries while she was doing her own shopping. It’s an unorganized mess. I am home quite a bit and could absolutely help get things organized etc but dh is like nope.

as a side note, while fil was telling me about her cooking, I turned to mil and said, you know, when I first married dh, I didn’t know how to cook either, and you helped me. Maybe you could help her and give her a little guidance? She shook her said I’m not helping anyone 😆

[saraha]

As a further complication for mil and fil, the nephew who helps so much, I guess his brother (they all live at home) is going to have an mri today for headaches and double vision. If there is something really wrong there (which we are praying there is not) that nephew will rightfully have to turn towards home to help his family. Dh’s brothers other three kids (besides helpful nephew) have a lot of issues going with them. 

[saraha]

I am trying to follow my own advice and stay away, but it’s so hard when friend is like, “can’t you help” and I think about that poor girl just being overwhelmed. And I want it to be successful for everyone. I guess fil tries to stay busy outside all day and avoid the aid because “I don’t know what to do with her “

[Carol in Cal.]

We have in home care for my mom, and cooking is part of the deal.  However, knowing what to cook and how to do it varies a lot from one caregiver to the rest.  She has one who she cannot believe can’t scramble an egg or get an egg and a freezer waffle ready and hot at the same time.  I find that completely believable as I have never scrambled an egg in my life (the smell makes me want to throw up, honestly) and would not eat one on a bet, so there you go.  However, the last time I was up there, the aide was trying to teach herself how to make scrambled eggs from a YouTube video.  While I admire that diligence, I think we have now found the true cause of the nationwide egg shortage, LOL.

[Carol in Cal.]

Regarding food, although the elderly may be used to eating simply, they tend to also be very used to eating very specifically prepared stuff, very set in their ways.  It sounds like someone needs to give this aide specific recipes with lots of detailed instructions on how to make them.

That was really sad about the abused filet mignon.   But see, if I was faced with a freezer with filet mignon, I would know what *I* would do with it, but I would not necessarily know what *they* would typically do with it.  And typical is so normalized within each family that it’s shocking to have anything else made that fits some other family’s norms.

[saraha]

3 hours ago, Grace Hopper said:

So y’all are expecting the aide to do scratch cooking? And provide day-long activities for MIL? No wonder she’s overwhelmed and bailing. 

SIL should come up with a schedule of activities, seems like that would be helpful. And provide supplies (ie, watercolor paints, simple games, large-piece jigsaw puzzles, videos she likes).
 

But ime the most an aide should be expected to do wrt food prep (unless you are paying her A LOT) is to plate up already cooked food and help make sure the patient eats. I mean, maybe fix a scrambled egg or cup of soup, very easy things. But full meal cooking? Is she expected to plan the menu and make a grocery list, too? Or cook based on what she finds in the fridge? Was scratch cooking whole meals clearly communicated to her as part of the job description? Did the other helpers do full meal cooking?

 

eta glad to hear her bathroom issues are better!

Forgot to say the other caregivers all made lunch from whatever they found and made sure they had adequate leftovers to heat up for dinner. So, like if they had really liked something I made and ate it all up, those three ladies would all make sure they made enough lunch to have for dinner and then let me know, or get a can of soup ready etc. I took meals over two nights a week with intended leftovers and so there were four nights of meals. On fridays they drove to the next county to the hairdresser and the Walmart and always picked up their dinner out. Weekends were someone else’s problem. The aids also did all the laundry and my friend was in charge of housekeeping.

[saraha]

5 minutes ago, Carol in Cal. said:

Regarding food, although the elderly may be used to eating simply, they tend to also be very used to eating very specifically prepared stuff, very set in their ways.  It sounds like someone needs to give this aide specific recipes with lots of detailed instructions on how to make them.

That was really sad about the abused filet mignon.   But see, if I was faced with a freezer with filet mignon, I would know what *I* would do with it, but I would not necessarily know what *they* would typically do with it.  And typical is so normalized within each family that it’s shocking to have anything else made that fits some other family’s norms.

Exactly, but dh is adamant about not offering to help unless asked. I tell you, it took 48 years for that man to make a boundary, but apparently when he does, it is rock solid 😆

Edited January 25, 2023 by saraha

[lauraw4321]

12 minutes ago, saraha said:

I am trying to follow my own advice and stay away, but it’s so hard when friend is like, “can’t you help” and I think about that poor girl just being overwhelmed. And I want it to be successful for everyone. I guess fil tries to stay busy outside all day and avoid the aid because “I don’t know what to do with her “

Don't get sucked in. Do what you've agreed to do and stay out unless/until asked and you and DH both agree with the plan.

[Carol in Cal.]

3 minutes ago, saraha said:

Exactly, but dh is adamant about not offering to help unless asked. I tell you, it took 48 years for that man to make a boundary, but apparently when he does, it is rock solid 😆

Maybe get him to tell SIL that she needs to provide specific instructions with recipes for the cooking?