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StellaM

Dr Hive, this is reasonable, yes ?

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30 minutes ago, Jean in Newcastle said:

A hospital that has visiting  hours does not ALLOW people to come when it is not visiting hours.  That is what Melissa is trying to explain. 

((Stella)) 

Thank you 

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ICU is full of machinery, equipment, nurses, doctors, checks and obs what feels likes every 15 minutes...no-one is sleeping in there or staying for much longer than an hour at a time - it's a masked, gowned, gloved environment with a single plastic chair. ICU staff does not expect patients to have someone with them at all times - in fact, every time I see an ICU nurse they tell me to go home and get some rest. So I do. I trust the staff and the hospital - it's a good one. 

 

 

 

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50 minutes ago, Jean in Newcastle said:

A hospital that has visiting  hours does not ALLOW people to come when it is not visiting hours.  That is what Melissa is trying to explain. 

((Stella)) 

 

I don’t think you need to scold anyone, Jean. 🙂

First of all, no one has said that Stella should spend 24 hours a day at the hospital. Some people have said that they do, but no one has said she should feel obligated to do the same. We are all aware that she has a lot of responsibilities in addition to worrying about her dh!

Additionally, no one has suggested that Stella break any rules. Obviously, if her local hospital is strict about visiting hours, she would have to either abide by those rules or request that an exception be made if she felt it was in her dh’s best interests (like if his condition was very unstable or he was very anxious about being left alone.) Perhaps it is not even an option to do that where she lives, but I’m sure you are aware that US hospitals have posted visiting hours as well, but many give family members permission to remain with patients well beyond the posted hours and even 24/7, particularly when a patient is very ill.

Whatever the case, all any of us were suggesting was that we hoped someone could be with Stella’s dh as often as possible because this is a tremendously difficult and stressful time for him. Hopefully, her in-laws will end up being a big help to Stella in that regard. 

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14 minutes ago, StellaM said:

ICU is full of machinery, equipment, nurses, doctors, checks and obs what feels likes every 15 minutes...no-one is sleeping in there or staying for much longer than an hour at a time - it's a masked, gowned, gloved environment with a single plastic chair. ICU staff does not expect patients to have someone with them at all times - in fact, every time I see an ICU nurse they tell me to go home and get some rest. So I do. I trust the staff and the hospital - it's a good one. 

 

 

 

 

I’m glad it’s a good hospital! Our ICUs are stricter about visiting hours than other parts of the hospital, too, and the doctors and nurses always seem to be very close by, so when a patient is in the ICU, family members aren’t there all the time and often only two people can visit the patient at a time. If others want to visit that same patient, they have to wait for someone else to come out. Once patients are in regular rooms, visitation isn’t usually as strict, particularly when a patient is still quite ill and someone from the family wants to be nearby to help them. 

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Stella, have you gotten any updates from the doctors at the new hospital? 

I keep praying that your dh will start to improve very soon and that he will respond to medications and treatments. Will he be starting dialysis soon, or are they hoping he won’t need it?

You must be exhausted!  😞

 

Edited by Catwoman

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1 hour ago, Catwoman said:

Stella, have you gotten any updates from the doctors at the new hospital? 

I keep praying that your dh will start to improve very soon and that he will respond to medications and treatments. Will he be starting dialysis soon, or are they hoping he won’t need it?

You must be exhausted!  😞

 

 

Well, they cultured the bacteria causing the pneumonia (legionella) so they can target it with the right antibiotics. 

I haven't spoken to the cardiologist yet.

The renal team are deciding in the next day or so whether to do emergency dialysis or start preparing for elective dialysis. It will be dialysis, sooner or later.

My kids just put me to bed with a cup of tea. They are the best.

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9 hours ago, Catwoman said:

 

I agree. The more company he has at the hospital, the better, and not just because he will probably receive better care, but also because it may be easier on him to have family around him to keep him distracted, rather than leaving him alone too much to lie around and dwell on worst case scenarios. Hospitals can be very lonely places.

Just pointing out the obvious, but the above isn't universally true. I don't really like company when I'm in the hospital, nor does DH. We're okay with each other being there, or others very occasionally and for short periods of time. But our experience is that if we're sick/injured enough to be in the hospital we need to rest and relax and heal. And neither of us can do the resting and relaxing part when visitors are around.We're introverts and having to interact with others, even family and close friends, drains our energy. We've never experienced a lack of care while not having visitors. On the contrary. To me it seems that CNAs and such are less likely to step in and check on the patient when there are visitors.

So this is really a very personal thing that I'm sure varies a lot.

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6 hours ago, Jean in Newcastle said:

A hospital that has visiting  hours does not ALLOW people to come when it is not visiting hours.  That is what Melissa is trying to explain. 

((Stella)) 

Visiting hours have never applied in spouse or parent situations in hospitals I have been in - they have been for other family members and friends but the single support person could remain around the clock and that can be necessary for a patient unable to communicate or advocate for themselves.  Are Aussie hospitals actually disallowing parents from being bedside with children and night and such??  That’s something  new to me.

 

That said, I’m actually the person who likes being left alone while in the hospital except for some daytime visitors so there’s that 🤔

Edited by Arctic Mama
Weird typo
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3 hours ago, StellaM said:

ICU is full of machinery, equipment, nurses, doctors, checks and obs what feels likes every 15 minutes...no-one is sleeping in there or staying for much longer than an hour at a time - it's a masked, gowned, gloved environment with a single plastic chair. ICU staff does not expect patients to have someone with them at all times - in fact, every time I see an ICU nurse they tell me to go home and get some rest. So I do. I trust the staff and the hospital - it's a good one. 

I’m glad you’re getting sleep 🙂

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10 hours ago, StellaM said:

Yeah, I can't be there 24/7. That's just the reality.  I can't even organise a 24/7 rotation. 

Is it less than ideal ? Sure. There are plenty of less than ideal things about this scenario. 

 

 

 

I'd not even feel like this is the idea.  It actually always seems very odd to me when people talk about having someone in hospital and having someone there with them constantly.  I don't really think I know anyone who could do that, or would try, for someone in hospital for a long time.  

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11 hours ago, Jean in Newcastle said:

A hospital that has visiting  hours does not ALLOW people to come when it is not visiting hours.  That is what Melissa is trying to explain. 

((Stella)) 

It's my experience that this generally isn't true for spouses and parents, but may be the case some places. That being said, if I was Stella I'd be taking as much time and distance as I needed. It's hard to be a caregiver 24/7 and when your "patient" is in the hospital getting care, that's a chance for you to be NOT on call.

Edited by hippiemamato3
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20 minutes ago, hippiemamato3 said:

It's my experience that this generally isn't true for spouses and parents, but may be the case some places. That being said, if I was Stella I'd be taking as much time and distance as I needed. It's hard to be a caregiver 24/7 and when your "patient" is in the hospital getting care, that's a chance for you to be NOT on call.

 

I am typically on the side of having a patient advocate at the hospital when possible. But that’s based on a US hospital model, and that usually me or one of mine is just in for a brief stay. 

I believe Stella is in an entirely different situation. She’s in it for the long haul, has little backup and her dh is even in a restricted accommodation at the moment. 

Stella, grab your oxygen mask whenever you can. It’s not like the concert is a random choice to go out partying - it’s the fulfillment of a promise to your sister. Please enjoy it with no guilty feelings. 

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6 hours ago, Bluegoat said:

 

I'd not even feel like this is the idea.  It actually always seems very odd to me when people talk about having someone in hospital and having someone there with them constantly.  I don't really think I know anyone who could do that, or would try, for someone in hospital for a long time.  

The only reason I happen to think it can be necessary is because I have witnessed a Dr. in a hospital accidentally giving a patient a wrong medication (ordering the wrong meds, anyway, not actually administering). But the only reason that was avoided was because the person there visiting was quick with a Google on their phone and asked a lot of questions and finally got to the bottom of things. And the doctors come in for such a short amount of time, maybe two 15 minutes in the entire day, maybe. So here, if you are trying to be an advocate or help manage someone's care, you have to be there all the time or at just the right time to catch the Dr. coming through and you have to know enough about the situation to ask the right questions, etc.

I don't think that's appropriate in Stella's case and I think she should really relinquish all caregiving to the Dr.'s and nurses while she can given the history with her DH actively sabotaging his own health. But, just to explain why people might argue for that...it's because it is really, really hard to get information or be in the loop unless you are there in the hospital all the time. And even then it's sort of dicey.

(sorry to derail your thread, Stella; I have been praying for you and your family)

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1 minute ago, EmseB said:

The only reason I happen to think it can be necessary is because I have witnessed a Dr. in a hospital accidentally giving a patient a wrong medication (ordering the wrong meds, anyway, not actually administering). But the only reason that was avoided was because the person there visiting was quick with a Google on their phone and asked a lot of questions and finally got to the bottom of things. And the doctors come in for such a short amount of time, maybe two 15 minutes in the entire day, maybe. So here, if you are trying to be an advocate or help manage someone's care, you have to be there all the time or at just the right time to catch the Dr. coming through and you have to know enough about the situation to ask the right questions, etc.

I don't think that's appropriate in Stella's case and I think she should really relinquish all caregiving to the Dr.'s and nurses while she can given the history with her DH actively sabotaging his own health. But, just to explain why people might argue for that...it's because it is really, really hard to get information or be in the loop unless you are there in the hospital all the time. And even then it's sort of dicey.

(sorry to derail your thread, Stella; I have been praying for you and your family)

 

That makes sense, but as you say, totally not the situation here.  Doctors are seeing dh 6 times a day, and ICU nurses are there all the time. 

 

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7 hours ago, Arctic Mama said:

Visiting hours have never applied in spouse or parent situations in hospitals I have been in - they have been for other family members and friends but the single support person could remain around the clock and that can be necessary for a patient unable to communicate or advocate for themselves.  Are Aussie hospitals actually disallowing parents from being bedside with children and night and such??  That’s something  new to me.

 

That said, I’m actually the person who likes being left alone while in the hospital except for some daytime visitors so there’s that 🤔

 

Babies and children - different. 

ICU doesn't actually have visiting hours, but the renal ward probably will. It's so patients get some rest. Especially given shared wards. I've been on shared wards where its like a flipping party - imagine 3 other families in the room visiting for hours while you are trying to sleep and recover! Visiting hours mean at least a few hours every day, and after 8 at night, when you can count on some quiet.

The only time i've had someone stay overnight was when I was in hospital with suspected MS and had a nursing baby - the hospital insisted I had someone stay if the baby was staying with me - so my Dad stayed and slept on a mattress on the floor. But that was because of the baby. not because it's routine here. 

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59 minutes ago, EmseB said:

The only reason I happen to think it can be necessary is because I have witnessed a Dr. in a hospital accidentally giving a patient a wrong medication (ordering the wrong meds, anyway, not actually administering). But the only reason that was avoided was because the person there visiting was quick with a Google on their phone and asked a lot of questions and finally got to the bottom of things. And the doctors come in for such a short amount of time, maybe two 15 minutes in the entire day, maybe. So here, if you are trying to be an advocate or help manage someone's care, you have to be there all the time or at just the right time to catch the Dr. coming through and you have to know enough about the situation to ask the right questions, etc.

I don't think that's appropriate in Stella's case and I think she should really relinquish all caregiving to the Dr.'s and nurses while she can given the history with her DH actively sabotaging his own health. But, just to explain why people might argue for that...it's because it is really, really hard to get information or be in the loop unless you are there in the hospital all the time. And even then it's sort of dicey.

(sorry to derail your thread, Stella; I have been praying for you and your family)

 

This was the case with my mother  and a weird combo of medications gave her hallucinations. If one of us hadn't been in the room at the time, the nurses wouldn't have caught it for a while. We've experienced the fallibility of medical staff  enough times  so always had someone with her no matter what. We discovered throughout the years with my mother's various hospitalizations that the nurses didn't mind having a family member stay with the patient, but she usually had a private room and wasn't on a ward.  Nurses never questioned it when one of us would stay with her.  My dad always brought them flowers and food, treated the staff with respect, stayed out of their way, but made sure she was getting the proper care and right medications.  

Didn't mean to start a fire storm with the suggestion of having someone always with your hubby.  It's just been our experience and accepted by most hospitals no matter the stated visiting hours. 

Hugs and prayer and good thoughts winging you way and that your hubby is starting to feel better. 

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51 minutes ago, Robin M said:

 

This was the case with my mother  and a weird combo of medications gave her hallucinations. If one of us hadn't been in the room at the time, the nurses wouldn't have caught it for a while. We've experienced the fallibility of medical staff  enough times  so always had someone with her no matter what. We discovered throughout the years with my mother's various hospitalizations that the nurses didn't mind having a family member stay with the patient, but she usually had a private room and wasn't on a ward.  Nurses never questioned it when one of us would stay with her.  My dad always brought them flowers and food, treated the staff with respect, stayed out of their way, but made sure she was getting the proper care and right medications.  

Didn't mean to start a fire storm with the suggestion of having someone always with your hubby.  It's just been our experience and accepted by most hospitals no matter the stated visiting hours. 

Hugs and prayer and good thoughts winging you way and that your hubby is starting to feel better. 

So for me, and I live in the states, I don't have anyone else here that would be able to sit all day and night with my dad if he were in the hospital (long term especially).  It is me and my DH and my 13 year olds.  No other family around.  He doesn't have a lot of friends, but maybe a couple would help short term.  I would not be able to do this unless I hired a caregiver to sit with him.  And...life continues to go on when a family member is in the hospital...school, doctor's appointments, grocery shopping, paying bills, laundry.  Sometimes there is only so much one can do.  I guess we just do our best.    

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21 minutes ago, Arctic Mama said:

Is it looking like he is going to need more than two days in the ICU, Stella?  Or is that still up in the air?

 

In the air. Depends when he can maintain decent oxygen sats on his own without the high flow oxygen mask.

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Stella, I hope things are relatively OK. I am so sorry your DH is so sick and you're in this position. 

I'm sending lots of strength and love. 

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19 hours ago, Shellydon said:

That seems so odd. Anytime anyone in my family been in the hospital it has been a private room and a family member always stays. The last time I stayed with my grandmother, the room had a fantastic extra bed. 

 

The maternity hospital here that I went to have single and double rooms.  It is on a first come first serve basis but the obgyn can put in a note on why you need a single room on medical grounds which doesn’t guarantee anything but gives you a priority when a single room comes up. I did get a single room with a single sofa bed that is sized just nice for someone 4ft tall or shorter. The maternity ward has a band for the partner which match the band for the patient, all other visitors are not allowed except during visiting hours.

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4 hours ago, EmseB said:

The only reason I happen to think it can be necessary is because I have witnessed a Dr. in a hospital accidentally giving a patient a wrong medication (ordering the wrong meds, anyway, not actually administering). But the only reason that was avoided was because the person there visiting was quick with a Google on their phone and asked a lot of questions and finally got to the bottom of things. And the doctors come in for such a short amount of time, maybe two 15 minutes in the entire day, maybe. So here, if you are trying to be an advocate or help manage someone's care, you have to be there all the time or at just the right time to catch the Dr. coming through and you have to know enough about the situation to ask the right questions, etc.

I don't think that's appropriate in Stella's case and I think she should really relinquish all caregiving to the Dr.'s and nurses while she can given the history with her DH actively sabotaging his own health. But, just to explain why people might argue for that...it's because it is really, really hard to get information or be in the loop unless you are there in the hospital all the time. And even then it's sort of dicey.

(sorry to derail your thread, Stella; I have been praying for you and your family)

 

I don't know, while this kind of error certainly happens, I'm not that inclined to think that its going to be caught all that often by someone without any medical training.

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59 minutes ago, Bluegoat said:

 

I don't know, while this kind of error certainly happens, I'm not that inclined to think that its going to be caught all that often by someone without any medical training.

Maybe not. But if you're there all the time you can hear Doctor A say, "We're going to give you X," and then hear another doctor say, "Okay, like Doctor A said we're going to give you Z."

And you can ask a lot of passive aggressive questions (because you're not medically trained and know nothing about medications or reading cultures) until the second doctor gets frustrated, tries to prove you're a doofus, and realizes their mistake.

The hospitalist system here in the states is really bad, there is very little continuity of care even among doctors in the same dang hospital, and if you have the wherewithal, you better keep track of who is doing what and medical training or no, ask ALL the questions. For me, it didn't take medical training to catch a mistake like that.

Again, not relevant to Stella, but sadly how things go here. I wouldn't have believed it until I watched it happen to an able-bodied adult patient who was sentient and aware but trusted his medical team implicitly to do something simple like...read his chart. So that is why a lot of people suggest being at the bedside of a hospitalized loved one as much as you can.

Edited by EmseB
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2 hours ago, Bluegoat said:

 

I don't know, while this kind of error certainly happens, I'm not that inclined to think that its going to be caught all that often by someone without any medical training.

My observation is that having an advocate in the hospital, especially in the ICU, can be pretty essential for getting the standard of care that some people need. A lot of it is stuff that lay people can catch - especially spouses who have been following a partner's medical needs for years, but also just anyone to ensure that certain things keep happening. I think this must vary a great deal though. I'm glad it sounds like it's not necessary in Stella's dh's case. I don't think it should be necessary... but my experience of the American healthcare system is that it often helps more than you might expect.

Holding you and your family in the light, Stella.

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Still in ICU, but stable. I can't handle ICU by myself; I've worked out that I have to take another person with me to stop from feeling sick with stress.

In laws arrive tomorrow.

I just keep falling asleep...it's not a helpful stress response...I've gotten nothing done this week other than visit and update other people and nap.

In good news, my ds turns 15 tomorrow, and we're having tiramisu...I did go to the concert with my sister also, and it was fantastic, and once feeling guilty at being out and enjoying myself wore off, it was a good mental break.

Thanks for the thoughts x

Edited by StellaM
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Don't worry about getting nothing done.  You are in a crisis situation right now.  Do what has to be done, sleep as much as you can, and take someone with you to the hospital.

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Thanks for the update. I agree with Ottakee--you are in crisis coping mode and coping with the crisis is all that can be expected.

I'm continuing to pray for all of you and hope that the birthday celebration goes well.

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2 hours ago, Innisfree said:

Continuing to hold you in my thoughts. Sleeping sounds like a good thing. Let yourself rest whenever you can.

 

Yes, and remember that because you’re so stressed, even when you’re sleeping, it may not be the most restful sleep, so you may still be feeling exhausted even when it seems like you’ve been getting some rest. 

Happy Birthday to your son — hopefully you can make it as fun and “normal” for him as possible. (It might help distract you a bit, too!) Thankfully, he’s going to be 15, not 5, so he will understand if you have less time to make a fuss over him. If he seems disappointed, you can always promise him another special day once things have calmed down a bit. 

Still praying for your family.

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I'm glad to hear you enjoyed the concert, Stella. 

Wishing your son a happy birthday and some delicious tiramisu.

Continuing to send good thoughts for your husband and for you.

Regards,

Kareni

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Just thought I'd update:

Dh is out of ICU as of yesterday, still in isolation though b/c of the legionella. 

On the renal ward. Very weak, very thin, but improving. He avoided emergency dialysis by the skin of his teeth, and kidney function since that low point has actually improved. 

I did not cope well with the IL's.  I may have raised my voice to my MIL. I don't care. I have zero care to give other than paying the rent, feeding the kids, and getting dh back on his feet - literally.

I laid down the law also - either dh takes responsibility for his health from now on, and that means abiding by his kidney disease guidelines re fluids, diet, seeking medical care and information as required and taking my concerns when I have them seriously, or he can move back wth his  parents. I am totally fried by the whole experience and have nothing left in the tank other than helping someone who is helping himself. We'll see.

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Hopefully, laying down the law will be the shock your dh needs to make him realize he can’t continue to be his own worst enemy, and that you’re not going to enable him to sabotage his health. 

Good for you! You said what needed to be said. 

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2 minutes ago, Catwoman said:

Hopefully, laying down the law will be the shock your dh needs to make him realize he can’t continue to be his own worst enemy, and that you’re not going to enable him to sabotage his health. 

Good for you! You said what needed to be said. 

 

Thanks Cat. To be honest I feel like a bitch but I just don't see another way forward. 

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Thanks for the update, Stella. I hope that positive changes are in the future.

Regards,

Kareni

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39 minutes ago, StellaM said:

 

Thanks Cat. To be honest I feel like a bitch but I just don't see another way forward. 

sometimes someone needs to be the bad guy. Sorry it has to be you, but sounds like the only way. Tough love and all that. 

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55 minutes ago, Ktgrok said:

sometimes someone needs to be the bad guy. Sorry it has to be you, but sounds like the only way. Tough love and all that. 

 

Yep. 

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hugs

you're doing the right thing. It's not being a bitch to assertively lay out the parameters of the problem & outline the tasks that need to be done. You're not even being the bad guy. You're being the smart, caring and logical person in the room.

but illness sucks 😞

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23 minutes ago, hornblower said:

hugs

you're doing the right thing. It's not being a bitch to assertively lay out the parameters of the problem & outline the tasks that need to be done. You're not even being the bad guy. You're being the smart, caring and logical person in the room.

but illness sucks 😞

 

That's a good reframe, gonna take that one, thank you!

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