Mom’s In the hospital

[Everskyward]

I'm not going to go into details about some of my mom's underlying issues, but I am also certain that her friends don't know about most of the more concerning ones that aren't public knowledge. People may be legally living independently and legally allowed to make their own decisions still, but there's a spectrum and at that point in life many (if not most) people are starting to slide further towards the "fewer decisions" category. We ran into this with my grandmother too.

If you don't already have medical and general power of attorney for you mom, you should probably do that while she still is able and willing to consent and sign the documents voluntarily. Controlling what her friends do or say will be harder.

 

[midwestpa24]

I've run into this with my parents years ago. My dad was rushed to the ER with chest pains while I was in college. I tried to call the house a few times off and on, but figured I was just missing them being home. This was before cell phones were commonplace. Finally after several days they called me, and thats when he admitted he had been in the hospital the whole time. Didn't want to worry me since I went to college decently far away.

 

[Ted]

If you don't already have medical and general power of attorney for you mom, you should probably do that while she still is able and willing to consent and sign the documents voluntarily. Controlling what her friends do or say will be harder.

Yes, an excellent point. We took care of that a few years ago.

 

[jtheune]

That is extremely poor advice.

As I already said, I understand that the healthcare professionals are bound by laws. Those are in place for good reasons, as are the rules about colleges not giving out their grades to parents (however when I was in college mom said "You ARE showing me your grades, or I'm not helping pay for it anymore" - a fair trade).

When you're talking about people who are not legally bound, this gets a lot more complicated. Sure, for a fully functioning, independent adult, respecting the privacy is important. I will agree there and say there are few places where it shouldn't be respected.

When you're talking about someone who's in or approaching the geriatric phase of life (or someone who has underlying medical, specifically mental issues) this is where you need to really think about whether you know the whole picture, and the answer is you probably don't.

I'm not going to go into details about some of my mom's underlying issues, but I am also certain that her friends don't know about most of the more concerning ones that aren't public knowledge. People may be legally living independently and legally allowed to make their own decisions still, but there's a spectrum and at that point in life many (if not most) people are starting to slide further towards the "fewer decisions" category. We ran into this with my grandmother too.

If the next of kin are known to be untrustworthy for some reason (known financial troubles, known money grubbers, criminal status, illicit drug use, or other underlying issues) then yes, you probably don't want to tell them. However those situations are pretty rare.

First things first, I'm glad to hear your mother is recovering, I hope she fine very quickly.

Now this may sound harsh but it's very real. That advice was spot on. If you want to be angry with someone, look in the mirror. If your mother can no longer make decisions for herself then it's on you to know that and to do something legal about it. If she is capable of making her own decisions then you should respect that as well as her friends respecting that. I've been in the same situation and I understand the pain that it can cause but the bottom line is that she is a adult and she deserves the respect of making her own decisions.

 

[Ted]

Now this may sound harsh but it's very real. That advice was spot on. If you want to be angry with someone, look in the mirror. If your mother can no longer make decisions for herself then it's on you to know that and to do something legal about it. If she is capable of making her own decisions then you should respect that as well as her friends respecting that. I've been in the same situation and I understand the pain that it can cause but the bottom line is that she is a adult and she deserves the respect of making her own decisions.

I stand by what I said. It was really bad advice and shows a lack of understanding of the realities of these issues.

Legally there's a line where someone can make their own decisions. There has to be, and I agree with that. However in reality there's a spectrum where people don't meet the legal criteria for having decision powers taken away and should still be allowed their independence for day to day, but when serious things occur need to have advocates who actually know them, their history, and their wants and needs. It gets more complicated. I'm not going to go further because, like I said, I'm not going to go into my mom's history.

Again, the people legally bound to privacy should respect that - they have to and I wouldn't ask any of them to risk their jobs. But when you're talking personal, it's a completely different matter.

We ran into this with my grandmother. Well-meaning friends thought they were "helping" by following her wishes on things that they shouldn't have based on incomplete data. Caused a lot of problems for her, them, and us.

 

[timwinters]

Ted, sorry I missed this thread until now. Condolences, and I hope things go as best they can. As far as some of the responses, I'm not sorry I missed those until now...

...obviously some here don't know you as well as others here do.

 

[jsstevens]

I stand by what I said. It was really bad advice and shows a lack of understanding of the realities of these issues.

[snip] Well-meaning friends thought they were "helping" by following her wishes on things that they shouldn't have based on incomplete data. Caused a lot of problems for her, them, and us.

I am very sympathetic of how hard this is for you and you are clearly doing your best to take good care of your mom despite the history. And being across the country is a whole 'nother level of hassle and difficulty. Our parents were both on the other side of town when we were dealing with such things. I'm glad she's in good care and happy with it (that counts for a lot!).

In all seriousness (We let my MIL stay in her own house for a year until she decided what we already knew: she couldn't handle it. We've discussed a number of times since how many ways that could have ended badly-thankfully it did not.) if the friends actions were based on incomplete data, how would they know? How should they have known?

I fully agree with and admire your desire to keep your mom as independent as possible for as long as possible. We are doing the same with my mom now. She lives in a mother in law suite attached to our house. She is mentally quite competent and needs little care other than some daily medical maintenance and transportation. But she's had multiple rounds with cancer and is in active treatment for it right now.

John

 

[PaulS]

I stand by what I said. It was really bad advice and shows a lack of understanding of the realities of these issues.

Legally there's a line where someone can make their own decisions. There has to be, and I agree with that. However in reality there's a spectrum where people don't meet the legal criteria for having decision powers taken away and should still be allowed their independence for day to day, but when serious things occur need to have advocates who actually know them, their history, and their wants and needs. It gets more complicated. I'm not going to go further because, like I said, I'm not going to go into my mom's history.

Again, the people legally bound to privacy should respect that - they have to and I wouldn't ask any of them to risk their jobs. But when you're talking personal, it's a completely different matter.

We ran into this with my grandmother. Well-meaning friends thought they were "helping" by following her wishes on things that they shouldn't have based on incomplete data. Caused a lot of problems for her, them, and us.

Ted, sounds like you have this under good control and understand the ins and outs of dealing with this stuff.

You are absolutely correct about advocates as people of this age are very vulnerable and medical professionals are not always correct. I had an uncle in hospice, near death, who developed a urinary tract infection. I told the hospice nurse that I wanted it treated, she flipped out on me, and said that I was trying to save him, he was in obvious pain. So I called his doctor, told him the story and he treated him, clearing the pain up quickly. At the end of the day it didn't prolong his life, but at least he was comfortable. Without an advocate he would have suffered needlessly.

The other thing to keep in mind is as some people age they are easier prey for scammers and scams. One of the more insidious one that I found was magazine subscriptions. Some how they had gotten his name and would send him invoices for magazines he didn't order, threatening to go to collection. I figured it out when I brought him 20 magazines and said "what the hell did you bring these for, they keep coming and drive me nuts." I asked him why he kept paying for them, he told me they were going to send him to collection. I told him it was a scam and he asked me to do his bills after this incident.

Keep fighting for her independence, I did the same for my mom, this is not a precision process, you'll know what you need to do when the time comes.

 

[Ted]

In all seriousness (We let my MIL stay in her own house for a year until she decided what we already knew: she couldn't handle it. We've discussed a number of times since how many ways that could have ended badly-thankfully it did not.) if the friends actions were based on incomplete data, how would they know? How should they have known?

This is really the point I'm trying to make. Animals tend to try to hide weakness. Humans are no different, except that for us it tends to be mental weakness we try to hide.

Here are some things any of my mom's friends know:

- She's over 70
- She's living alone
- Her only immediate family is her son, with whom she is on good terms but they probably don't talk every day, who lives 1,000 miles away. No other family, immediate or otherwise, lives nearby

I would submit that for a large percentage of people meeting those criteria, ensuring the next of kin is notified is very important.

 

[Ted]

Ted, sounds like you have this under good control and understand the ins and outs of dealing with this stuff.

My job is to make phone calls, get decisions made, coordinate to make things happen. Fundamentally, that's what an advocate for a patient needs to do.

You are absolutely correct about advocates as people of this age are very vulnerable and medical professionals are not always correct. I had an uncle in hospice, near death, who developed a urinary tract infection. I told the hospice nurse that I wanted it treated, she flipped out on me, and said that I was trying to save him, he was in obvious pain. So I called his doctor, told him the story and he treated him, clearing the pain up quickly. At the end of the day it didn't prolong his life, but at least he was comfortable. Without an advocate he would have suffered needlessly.

I will say that the people at her hospital who I spoke to were all fantastic. All very kind people who I did believe had her best interests at heart, and I think their decisions and advice were all sound.

However they also get limited in terms of where they can truly push a direction, and so that's where I came in. Ok, need to pick a rehab center. What are the options, which ones are available, should she stay in NYC vs. me bring her out here to KS where I can be more on-site for help, where's she going to be happiest and get the best care for the best outcome. On her own she would've come to the wrong conclusion on that, and the hospital folks are limited in what they can suggest. But I can ask the needed questions and see through the BS.

Plus, one thing we found out about, is that these places can have aggressive sales teams. I found out mom was in the hospital because one facility called me to let me know mom had been accepted to their facility, and basically try to get me to commit to sending her. They then stopped by her hospital room once an hour to try to get her to sign. Now, one thing that's good about mom in these cases is that she hates hard sells. But she likely would've ended up there.

 

[jsstevens]

This is really the point I'm trying to make. Animals tend to try to hide weakness. Humans are no different, except that for us it tends to be mental weakness we try to hide.

Here are some things any of my mom's friends know:

- She's over 70
- She's living alone
- Her only immediate family is her son, with whom she is on good terms but they probably don't talk every day, who lives 1,000 miles away. No other family, immediate or otherwise, lives nearby

I would submit that for a large percentage of people meeting those criteria, ensuring the next of kin is notified is very important.

Fair enough.

My dad had cognitive issues for the last several years of his life. He was always a joker and so he used that to deflect from what he couldn't remember. A Dr. once asked him what season it was (in April) and he replied that it was sure hot enough outside to be summer. (Which it was. 95 ish here in Florida.) But he still didn't answer the question.

At any rate, you have my sympathy and respect for what you're doing for your mom. It's really hard even when they're only an hour away.

 

[PaulS]

My job is to make phone calls, get decisions made, coordinate to make things happen. Fundamentally, that's what an advocate for a patient needs to do.



I will say that the people at her hospital who I spoke to were all fantastic. All very kind people who I did believe had her best interests at heart, and I think their decisions and advice were all sound.

However they also get limited in terms of where they can truly push a direction, and so that's where I came in. Ok, need to pick a rehab center. What are the options, which ones are available, should she stay in NYC vs. me bring her out here to KS where I can be more on-site for help, where's she going to be happiest and get the best care for the best outcome. On her own she would've come to the wrong conclusion on that, and the hospital folks are limited in what they can suggest. But I can ask the needed questions and see through the BS.

Plus, one thing we found out about, is that these places can have aggressive sales teams. I found out mom was in the hospital because one facility called me to let me know mom had been accepted to their facility, and basically try to get me to commit to sending her. They then stopped by her hospital room once an hour to try to get her to sign. Now, one thing that's good about mom in these cases is that she hates hard sells. But she likely would've ended up there.

I would say 95% of the medical field people I ran into were fantastic, that one nurse was the only clinker I found and the other 5% were well intentioned, at least I have to believe that.

I think the biggest fear for people in your mother's situation is the loss of control over their lives. Communication and a promise that she'll make the calls from you will probably give her all the control she wants and allow you to steer the decisions that need to be directed.

There really are not that many wrong answers. Hang in there.

 

[Matthew]

I hope your mom is not too stubborn to listen. She's going to have to start considering "what's next". She may have a long and healthy life ahead of her in her own place, but this should be a wake-up call. It's an opportunity for you and her to start a plan. It's no fun, I know that from personal experience. But this is a good time to get that discussion started.

 

[Ted]

I hope your mom is not too stubborn to listen. She's going to have to start considering "what's next". She may have a long and healthy life ahead of her in her own place, but this should be a wake-up call. It's an opportunity for you and her to start a plan. It's no fun, I know that from personal experience. But this is a good time to get that discussion started.

She's pretty stubborn and listening isn't always her strong suit. The past 5 years or so I think she's really been trying to prove to herself that she can do all of this on her own - basically she got old and then realized it's not so fun.

However, I do think that this experience is waking her up.

 

[Tom-D]

She's pretty stubborn and listening isn't always her strong suit. The past 5 years or so I think she's really been trying to prove to herself that she can do all of this on her own - basically she got old and then realized it's not so fun.

However, I do think that this experience is waking her up.

allow your mom to be independent for as long as you can.

 

[Ted]

allow your mom to be independent for as long as you can.

The goal is to keep her living in her apartment and going to France for as long as possible.

 

[Tom-D]

The goal is to keep her living in her apartment and going to France for as long as possible.

Grandma lived 11 years after GrandPa passed and lived alone, after we found she had fallen we decided to move her to our house, she lived 14 years after that.

We miss her still.

 

[Ted]

Grandma lived 11 years after GrandPa passed and lived alone, after we found she had fallen we decided to more to our house, she lived 14 years after that.

We miss her still.

Moving mom to my house is not something that I see happening. The house and property are not at all suited for people who have a hard time getting around. And while I'm happy to build @denverpilot a Cummins-powered 4x4 wheelchair, mom wouldn't go for that. She doesn't enjoy Kansas and while she likes seeing us, the reality is her life is much more about her friends in New York. When my grandmother moved into her retirement community it worked because she had many friends already there. Mom, unfortunately, doesn't have a similar place currently.

However, New York City is really a great place for her to stay, and so is her apartment. All her friends are there, there are lots of convenient services, everything is close, her apartment has no stairs in it and the doorman can help her get up and down the 3 steps to enter and exit the building. The best solution I've seen for this sort of situation is some level of in-home care that starts off with partial and then evolves into 24/7 with time. One of the women in the building (who's probably 10-20 years older than mom now) is in that situation currently and it's working well.

I have my thoughts on the best course of action will be and we'll see what happens.

 

[denverpilot]

And while I'm happy to build @denverpilot a Cummins-powered 4x4 wheelchair, mom wouldn't go for that.

Take care of momma first. You know that.

I found some dude who makes custom tracked wheelchairs for people who used to enjoy the woods. They’re totally wild. Probably weigh a ton too. Not something I’m interested in, but he makes them one at a time and they’re not cheap. Always looking for donations and such.

Photos showed a guy Elk hunting from one. Ha. Wow. Such tech. And what a neat way for that guy to give in his free time.

 

[Ted]

Take care of momma first. You know that.

Momma don't like rolling coal, though. Ted needs to have fun still.

 

[Gary]

However, New York City is really a great place for her to stay, and so is her apartment. All her friends are there, there are lots of convenient services, everything is close, her apartment has no stairs in it and the doorman can help her get up and down the 3 steps to enter and exit the building. The best solution I've seen for this sort of situation is some level of in-home care that starts off with partial and then evolves into 24/7 with time. One of the women in the building (who's probably 10-20 years older than mom now) is in that situation currently and it's working well.

I have my thoughts on the best course of action will be and we'll see what happens.

Very sorry to hear about your Mom. Parental care is tough, and even tougher when you are 1000+ miles away. I think your idea of doing everything possible to keep her in her apartment is a good idea.. so long as she is reasonably capable to taking care of herself. It is a familiar setting, her friends are there and the city does have the advantage of good medical care. Bringing in home-care can be a big help, but does get expensive and (IMHO) is completely dependent of the competence of the person doing the help. From personal experience with my Mom, there are good ones and not so good ones. It's almost a trial and error thing to find the right person with the compassion, experience and desire. With home help, you do then have the ability to get a second option on how she is doing and keeping up-to-date if there is an issue. My Mom has Alzheimers and trigeminal neuralgia, a very nasty combination. She wasn't eating, wasn't staying hydrated and was not able to maintain her schedule of medications (VERY important for avoiding the trigeminal pain). A home-help person was useful at first, but things got so bad there was no way she could live on her own, even with the help. That was a very tough conversation with her... she believed she was doing far better than she really was. Memory care was the only real option, as 24-hour supervision was necessary.

Good that you have the paperwork done, the Power of Attorney and Health Care Directive are the two most important pieces of paper in acting for your Mom's best interest. Hope this works out, it is hard on your Mom and also very hard on the caregivers (you!).

 

[Ted]

From personal experience with my Mom, there are good ones and not so good ones. It's almost a trial and error thing to find the right person with the compassion, experience and desire.

Yes, this is one of the things that I'm a bit concerned about with in-home care since I'm so far away. However, we do have trustworthy friends there who I believe can be instrumental in helping if we go down that path.

If she goes down my grandmother's path, you're correct that at some point she won't be able to live there anymore. One thing at a time, though. I think that some life adjustments are warranted, but this is still something she's expected to "fully" recover from.

 

[wsuffa]

My job is to make phone calls, get decisions made, coordinate to make things happen. Fundamentally, that's what an advocate for a patient needs to do.



I will say that the people at her hospital who I spoke to were all fantastic. All very kind people who I did believe had her best interests at heart, and I think their decisions and advice were all sound.

However they also get limited in terms of where they can truly push a direction, and so that's where I came in. Ok, need to pick a rehab center. What are the options, which ones are available, should she stay in NYC vs. me bring her out here to KS where I can be more on-site for help, where's she going to be happiest and get the best care for the best outcome. On her own she would've come to the wrong conclusion on that, and the hospital folks are limited in what they can suggest. But I can ask the needed questions and see through the BS.

Plus, one thing we found out about, is that these places can have aggressive sales teams. I found out mom was in the hospital because one facility called me to let me know mom had been accepted to their facility, and basically try to get me to commit to sending her. They then stopped by her hospital room once an hour to try to get her to sign. Now, one thing that's good about mom in these cases is that she hates hard sells. But she likely would've ended up there.

That last paragraph is important. And it's even worse when they are owned by the hospital system or have a "partnership" that provides financial remuneration ('kickback') to the hospital system. Even worse if hospital social workers are in on the game.

Regardless of where you stand on single-payer, the system is strongly biased against you and your financial well-being. There's too much money at stake.

 

[wsuffa]

I stand by what I said. It was really bad advice and shows a lack of understanding of the realities of these issues.

Legally there's a line where someone can make their own decisions. There has to be, and I agree with that. However in reality there's a spectrum where people don't meet the legal criteria for having decision powers taken away and should still be allowed their independence for day to day, but when serious things occur need to have advocates who actually know them, their history, and their wants and needs. It gets more complicated. I'm not going to go further because, like I said, I'm not going to go into my mom's history.

Again, the people legally bound to privacy should respect that - they have to and I wouldn't ask any of them to risk their jobs. But when you're talking personal, it's a completely different matter.

We ran into this with my grandmother. Well-meaning friends thought they were "helping" by following her wishes on things that they shouldn't have based on incomplete data. Caused a lot of problems for her, them, and us.

Ted is 100% correct on this.

 

[Rushie]

Well after what feels like all day on the phone with various rehab facilities and the social worker at the hospital (who really was extremely nice, very helpful, and great at communicating with me once she had my contact info), mom is getting transferred to a rehab/nursing facility. There were three options and fortunately we were able to get her into the one that seemed like the best fit.

Because of the Beer Flu (COVID-19), however, there are no visitors into these facilities for the time being, which means that me going to New York does absolutely nothing since I won't be able to see her. Mom also doesn't have a charger with her for her iPhone. Fortunately it's an 11 Max with a very good battery and she was able to borrow a charger yesterday (and will have to borrow another one at rehab, I suppose) but that is an issue.

The good news is that we got things settled and she is on a path for getting treatment to get better, and she's also seeming to be more accepting of my help now. So hopefully that will get the point across that waiting to tell me is not helpful for anyone.

Maybe you could just ship her a charger if she’s going to be in rehab more than a few days. Amazon, or direct from Apple if you want the official one. Amazon would be faster. Maybe call the place and make sure she can receive the package, I don’t know if they have policies about that.

 

[Ted]

Maybe you could just ship her a charger if she’s going to be in rehab more than a few days. Amazon, or direct from Apple if you want the official one. Amazon would be faster. Maybe call the place and make sure she can receive the package, I don’t know if they have policies about that.

One of her friends managed to bring her one.

Her first day of physical therapy went well. Next week I need to touch base with the people there so I can establish communication and work in formulating plans.

 

[azure]

Ted, very sorry to hear you're going through this. I was relatively lucky when I was going through this with my Mom because my Dad was still able-bodied and could handle much of the burden. But it's no picnic, whatever the circumstances. Hang in there.

 

[Ted]

Aftermath: The whole ordeal has been a bit over 3 weeks from the fall until going home, but she goes home tomorrow. She spent about 4-5 days in the hospital and then 2.5 weeks in rehab. She says she's been doing really well, and if she's going home she has to have done well enough for them to release her. That said I'm pretty sure she's not doing as well as she says she is. They've told her they're going to have someone come to help her for the first howerever long with things like clothes, and her friends are doing a good job of supporting in terms of helping to get her food, set back up, as well.

So, assuming she didn't catch beer flu in the nursing home, looks like things will be back to normal soon.

 

[Ted]

...and she's back. Do they offer "Visit 10 times get one free?"

At least this time I was informed, although it didn't sound like it was what mom wanted.

Bah humbug.

 

[MacFly]

Yeah, some of these medical admins have **** for brains. I hope your mom gets better soon.

They can't call anyone without her express permission. Can't even call the emergency contact unless it's an actual emergency. Any health care facility pays a STEEP price for a HIPPA violation.

 

[Everskyward]

...and she's back. Do they offer "Visit 10 times get one free?"

At least this time I was informed, although it didn't sound like it was what mom wanted.

Bah humbug.

Sorry to hear. I never enjoyed getting that phone call, but better than not getting it...

 

[Ted]

Sorry to hear. I never enjoyed getting that phone call, but better than not getting it...

Last time mom tried to hide it from me. This time she still didn't call me herself but I found out from a family friend at least instead of from a rehab facility that wasn't supposed to call me. Of course she also didn't instruct the friend to call me, but the friend knew I'd want to know and I expressed my gratitude.

Yes, I agree. The call isn't fun but it's better to get the call than not when it happens.

 

[kyleb]

Far better for information to flow quickly as opposed to slowly. Last Wednesday night I spent from midnight to 3AM in the ER with my father for what should have been a minor problem, IF he'd call to discuss/address the issue when it first became apparent mid-afternoon. It could have been handled by the onsite nurse at assisted living. Instead, he waited (didn't want to bother anyone) and I got the call at 11:30, when it was a fully developed problem.

 

[bbchien]

Good to hear, Ted.

 

[denverpilot]

...and she's back. Do they offer "Visit 10 times get one free?"

I asked the MRI people if they had a frequent flyer punch card. Ha. They laughed and said no, unfortunately...

 

[denverpilot]

P.S. Glad mom’s home.

 

[denverpilot]

Far better for information to flow quickly as opposed to slowly. Last Wednesday night I spent from midnight to 3AM in the ER with my father for what should have been a minor problem, IF he'd call to discuss/address the issue when it first became apparent mid-afternoon. It could have been handled by the onsite nurse at assisted living. Instead, he waited (didn't want to bother anyone) and I got the call at 11:30, when it was a fully developed problem.

You wouldn’t believe the behind the scenes stories on stuff like that.

I’ve seen my wife lose it on another nurse who refused to change a dressing on a Sunday at a full blown nursing home (let alone assisted living) because they wanted the home health care on-call nurse to come do it.

“Why is this patient even in a full nursing facility if you can’t change a dressing and schedule the home care nurse to stop by to check it on Monday?!”

It gets worse from there. Trust me. LOL.

Even better is the opposite when a nursing facility decides to go against a wound care Doc’s orders and “do it the way we’ve always done it here”.

Want to see my wife’s head explode? Hahaha.

 

[Ted]

Good to hear, Ted.

P.S. Glad mom’s home.

This is round 2. She’s back in rehab. No surgery so that’s good, but the rest of it? Not so great.

 

[wsuffa]

This is round 2. She’s back in rehab. No surgery so that’s good, but the rest of it? Not so great.

Ugh. BTDT. I'm hoping for the best for her, Ted. It's even worse with the lockdowns and such.

At least they're doing rehab instead of what they did with my mom.

 

[Ted]

Ugh. BTDT. I'm hoping for the best for her, Ted. It's even worse with the lockdowns and such.

At least they're doing rehab instead of what they did with my mom.

This is her second time in the hospital/rehab this year. The first time was in March, and after she left the rehab facility then 35 patients/residents died. Now at that time there were a lot of the most susceptible people dying and I don't think protocols were as robust as they are now. Still, she has concerns given that. She does have a private room and there are no visitors allowed in the facility (just deliveries) so I won't be able to see her (I wasn't able to see her in March, either).

She's got concerns about the safety of rehab, and I think she's not wrong to have those. At the same time she's going to end up like her brother did (in a wheelchair, permanently) if she doesn't do any rehab.