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Greg23 Asked November 6, 2023

New here and can’t figure out next steps with parents.

Hi. I live in Illinois. Both parents live at home in Florida. Dad is 88 and has heart issues. He almost died in May and had a pacemaker put in. He needs another operation in December to have it adjusted. Mom is 82 and has declined cognitively. She refuses to be seen by a doctor so there’s no formal diagnosis. Neither drives and neither is really cooking or cleaning. They have a younger neighbor going through a rough time of his own who basically moved in and does cooking, cleaning, and household maintenance for some money. I don’t know the details but am pretty sure they’re not overpaying him and they’re saving money by not using a professional caregiver agency. But he doesn’t have any training and has diabetes which has been making him fall asleep randomly. I’m worried this isn’t a good situation but also wonder if it’s okay since they’re getting some support and he’s helping them stay in their home? After dad was hospitalized in May the social workers told me and my sister that both parents needed to move to an assisted living facility but dad says absolutely not. He doesn’t want to spend the money and has a negative impression of all assisted living homes. My sister and I were both recently given healthcare POAs. I’ve read it multiple times. It looks pretty standard but I don’t really see how it allows us to put them in assisted living against their will, or if it does. I’m going to visit them for 4 days in early December when he goes in for surgery and am wondering if I should try to make mom see a neurologist or push harder for assisted living but it feels like maybe too much because of the surgery. Advice welcome. Thanks.

BarbBrooklyn Nov 29, 2023
Greg, here is some information about POLST:

Physician Orders for Life Savings Treatment

https://polst.org/form-patients/

More complete than a DNR/DNI

BarbBrooklyn Nov 28, 2023
Greg, I don't think discharge planning is going to get involved in what sounds like an outpatient procedure.

However, this IS an opportunity for you to call the SW and see if she can come around and introduce her/himself to mom, offer support and make contact. Call the SW and if there is something informal you can set up.

How long will you be staying with your folks?

Has the surgeon discussed what kind of aftercare dad needs? Restrictions for after the surgery? What kind of anesthesia will be used?

Has the idea of parents having some home health care (needs to be ordered by the doctor) been discussed to monitor dad medically after surgery?

How soon will the follow-up be with cardiology? Is there a monitor in their home that receives signals from the pacemaker?
AlvaDeer Nov 28, 2023
Greg's latest to us, Barb, is below, and looks as though his mom is failing, and at this last point couldn't even truly understand what a social security number is. So I am pretty worried about this, and hope his trip is prolonged and he can get together what's happening here.
There is a sister involved somewhere in this and I am hoping she is living in FL where the surgery happens this Friday morning with Greg flying in on Thursday.

I hope Greg will update us how it goes, but more importantly I hope he won't be flying back to Chicago with these two parents on their own, as it sounds like things will go downhill fast whatEVER the outcome of this surgery is.

Again, good luck Greg. Please update us. Thinking of you.

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Sadinroanokeva Nov 28, 2023
Sometimes we have to make decisions for our parents IF their decisions are unsafe. I would want to move them near me. We did that with my mom.She was cooperative but not thrilled.. I became her POA shortly after her move.. She has had cognitive issues for the last 5 years. We did the POA before her dementia diagnosis. She does not always love my decisions but my job is to keep her safe not necessarily happy. . Good Luck.

Greg23 Nov 28, 2023
Update from Greg
Hi. Stressed about the trip Thursday morning. Dad’s operation is Friday morning. I’ll be bringing mom to the hospital and waiting there with her most of the day, I’d imagine. There’s part of me that wants to call the hospital discharge planner or social worker tomorrow and try to tell them about the whole situation and see if maybe they can intervene in some way at the hospital? But part of me thinks it’s a bad idea to possibly cause tremendous upheaval at such a vulnerable time, while he’s on the operating table and she’s worried about him surviving the operation. It also feels very sneaky but some of the helpful comments here say sometimes that’s what is required.

AlvaDeer Nov 27, 2023
Having a bit of trouble posting if you see scrambles from me on this post, but do also see Greg's update to us. He leaves for parents on Thursday, and is seeing increasing confusion from Mom's phone calls. He responds below to a question.
This is looking scary to me with a "young down on his luck neighbor" intervening there.

graygrammie Nov 21, 2023
You might want to mention to your parents that if they don't make decisions about getting into a better / safer living situation, then someone else WILL make that decision for them. And it might not be you. It might be the state. You don't want to get to that place.

MAYDAY Nov 21, 2023
Since you snd sister are not close enough to parents, makes it difficult to oversee their needs.
get as much done as you can now as far as scheduling appointments. Set up an appointment to take them both on a tour of aging in place assisted living with a tour of the place. Sometimes they will want you to have lunch with then.
I didn’t realize how important vitamin B1 is for the brain. Stress is probably the main factor.
mom, if you don’t take care of yourself, who is going to care for dad?
You are POA. Make sure you give the healthcare providers a copy of that. Make sure dad had a POLST SIGNED BY HIS DOCTOR before this surgery just in case…
Good luck!
Greg23 Nov 29, 2023
Hi. What's a POLST?
Greg23 Nov 20, 2023
Hi. Here’s some more info. Maybe I shouldn’t have said “bedridden” before. I haven’t been to visit yet but my sister says our mom can get up and move around the house but seems to choose to stay in bed most of the day. This is basically what my dad says, that she’s in bed all the time. I think it’s probably true that it’s mostly by choice.
Fawnby Nov 20, 2023
If she keeps staying in bed most of the time, she’ll soon be unable to get up at all. Do what the social worker advised. They need facility care NOW.
AlvaDeer Nov 19, 2023
Marc, thanks for all your updates and I sure want to wish you great good luck on your trip to your parents for end of this month.

I understand a bit why they may want to do this surgery if they have a misplaced lead, but don't understand why they don't consider it "emergent" still. Seems like a floating lead would be a problem but it may have simply imbedded wrong.

I know you are hoping for the best with the "down on his luck" helpful neighbor. I hope you are right, but it makes me uncomfortable and part of that is simply your not being there to monitor for any problems. I think and hope you will get a better feel for things when you are there.

I very much hope you will make us an update thread during or after your visit with your folks.
While there, be certain they have all their paperwork in place with advanced directives, DPOA forms, their wishes in case of problems. Be certain you "know where stuff is". I am an old 81 year old retired RN and have made for my daughter an collage-illustrated "death book" copy on my desk (dia de los muertos skeletons and all!), copy to her. Included pictures of where hidden keys are, family pictures, documents, and who to call and inform with numbers, and all current accounts. She and I go over it twice yearly on visits to one another, but like you, we live in other states from one another.

GOOD LUCK.
Greg23 Nov 26, 2023
Hi. I don’t think I know how to make an update thread. I’m leaving on my trip Thursday. I talked to my parents today. There was a credit card issue and mom didn’t know her SSN or DOB. It sounded like she didn’t even really know what a social security number was.
Cdaughter Nov 19, 2023
I was in a similar situation myself where I live in IL and my Mother lives in FL. I couldn’t tell she had declined cognitively as she hid it well. However as others have said there usually comes a crisis point where something happens and it has to be dealt with. This is what occurred with my mother and as she lived alone there was no way she could hide it anymore. This scared her and ultimately she was put into assisted living.  Unfortunately in your situation you have others in the house who can cover for each other if things get bad.

All in all this does not sound like a good living situation for the 3 of them. Therefore I would use the opportunity when you are going to visit to take a good, hard look at the situation. Can your sister go with you as it helps to have someone else’s opinion? I know your Dad’s health is your main priority but maybe while you’re there you could gather some information about assisted living facilities as others have said and possibly even take a tour. It wouldn’t hurt to have some in mind for the future. Tell them they can even live together.

Let us know how things go and if we can help any further. I certainly know how hard this can all be long distance!

AlvaDeer Nov 6, 2023
The ONLY thing that allows one to put someone in care is that they are judged by the court to be incompetent. So you can lay that to rest. Because BOTH your parents would have to be judged by a court through guardianship procedures. They have already refused. That is unlikely to change. If you feel they both ARE incompetent you can open a case with APS to have them visited. They can try to have them assessed. The parents will almost certainly refuse. And then you can decide about attorneys and fighting them in court.

To my mind it is impossible to have GENERAL POA, guardianship, conservatorship over people who are not cooperative. And long distance? No. Just no. Doesn't work. Would NEVER work.

Your Medical POA does nothing. It allows you to make decisions when your parents are unable to do so. See to it you understand in your own minds, you and sis, not to do heroic measures, because your parents are now of the age and on the path that living will not have quality, only
quantity that would not be desired by themselves nor anyone else.

I am a former cardiac nurse. I don't understand this other surgery planned for a pacer. A pacemaker is adjusted from the outside now, simply and without invasion. Unless leads are not correctly placed, I cannot imagine going in again. And incorrectly placed leads means Dad doesn't really have a working pacemaker. At this point, does he want one? Do you KNOW his medical wishes? Because you are his medical POA.

I think without visiting on a medical family leave for a bit you have no way of knowing what is happening here nor of how safe they are, nor even whether or not they are prey to someone unvetted who is currently in their household. This younger "neighbor" may have made himself a caregiver/tenant at this point.

I am sorry. This is such a dilemma. And ultimately, with BOTH your parents uncooperative there is very, very little you can do about ANY of this. From so far away I am uncertain if you can even be certain of the facts, of what you are daily hearing. I just wish there was something I could say to help or comfort you. But when parents refuse care there is often nothing to be done but let push go to shove. And it WILL. There will be a crisis. So if you cannot leave now, and your Sis cannot, just know there will come a time you may have to.

I sure hope you'll update us, but this all sounds quite dire. I cannot imagine what might help. I wish I could.
Greg23 Nov 7, 2023
Thanks. The surgery December 1 is for incorrect placement of the leads. I also wondered if he needs the operation since I don’t think he’s had heart problems since they put it in him in May. But my sister talks to the doctor’s office and they say he needs it. He has a screening appt a week before the operation. The younger neighbor is 54. They say they’ve known him for 20 years and seem to trust him. I’ve never met him. He seems to be down on his luck. I share the concerns about his motives but am mostly just hoping it’s okay. I’m traveling there for 4 nights and not sure where I’ll end up staying. The neighbor is sleeping in the guest room and I don’t want to disrupt their routine so I have a room booked in a nearby hotel. I think it’s that or sleeping on the couch which I may end up doing since the hotel room can be canceled without penalty until the day before checkin. I have a contact social worker the hospital put my sister and I in touch with. She wants to talk to my dad and assess both parents with an eye toward convincing them to go to assisted living. I’ve been holding off on coordinating that call since he’s dead set against it.
Geaton777 Nov 6, 2023
I live in MN and have been managing care for 2 LOs (now down to 1) in south FL.

If I were in your situation I would take time off and fly down there to get all the ducks in a row before a full-blown crisis occurs (as least 2 weeks). Also because having that sick neighbor responsible for their care and in their personal business would make me uncomfortable for many reasons. If at all possible stay in their home while you're there. If you think you "can't afford" to take time off to do this, waiting for a full-blown crisis will be much worse.

Before you go down there make an appointment with a certified elder law attorney there so you can get financial PoA for them. Then make appointments for them for cognitive exams with their doctor (this can be done using a "therapeutic fib"). Then once this is hopefully accomplished, go to their banks with the FPoA paperwork.

FYI if the neighbor starts getting his mail at their home, this makes it his legal residence and could be a proble if he doesn't move out.

There are strategies to get your parents into a facility but for the time being you need to work on having the legal authority to get this to happen for them, willing or not.

I wish you much success and peace in your heart on this journey!
Greg23 Nov 7, 2023
Thanks. It’s helpful to hear from someone who also has to do this from a long distance. I’m going there for four nights at the end of this month. I’m not expecting anything easy or fun but I know it’s the right thing to do and expect to feel good about having done it once I’m back home. Right now all that’s expected of me is to drive them to the hospital for his operation and keep my mom company until they release him. I have a hotel room booked since the neighbor is sleeping in the guest room and I don’t want to disrupt their routine. It’s either that or sleep on a couch. My sister and I have financial POA too. She’s done a lot of work organizing their finances.
Ohwow323 Nov 6, 2023
As long as they are of sound mind they can make their own decisions. Try to make them understand that the person living with them is not a good match and that assisted living places are not nursing homes.
As far as mom tell her she needs to see the doctor because her medication needs to be refilled and doctor will not renew it until she sees the doctor.
The only way I got my daddy to do what I asked of him is that he resigned to me and had to trust me what I was doing was the best for him. He questioned me daily but I would tell him over and over again that what we were doing was the best thing. Also, it helped that he had been in the hospital and I told him that he couldn't come home until the doctor released him from this place. I had to place him in a facility and just told him it was a hospital. Don't know if that would work for you but Thank God it worked for me. Blessings
Greg23 Nov 7, 2023
Thanks. I think I’ll try to talk with hospital staff when I’m there. My sister told me that the hospital recommended assisted living for both of them back in May after being around them. Maybe depending on how the operation goes an answer will become clearer.
NeedHelpWithMom Nov 6, 2023
Welcome to the forum!

Interesting situation. How well do your parents know this guy who has moved into their home?

Yes, encourage your mom to see her doctor for an assessment of her condition.

I would make sure that your parents know that there can be complications of allowing their neighbor without any medical training help them.

As assisted living facility would be a far better option. Could you do a bit of research and pick up brochures for them?

Many facilities will offer an invitation to lunch when you tour them. Invite your parents to join you.

You can help them to feel comfortable by saying that you want the very best care for them and it would please you very much if they would consider “looking” at a few facilities.

Best wishes to you and your family.
Greg23 Nov 7, 2023
Thanks. It is a strange situation. I think it’s mostly rooted in my dad’s desire to save money and he may be taking it too far or putting himself at risk of losing more than if he didn’t hire the neighbor as a live-in caregiver/handyman/cook/butler. He says he’s known him over 20 years and I don’t think he would allow himself to be duped but it’s possible. I haven’t met him. I want to believe it’s okay but I do wonder why someone would want to live like that for a small amount of money.

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