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The home nurse was here last night and she wanted me to make a specialist appt for my dad. I explained that he’s refused (violently at times, I’ve tried paid caregivers, bribes, tough love, etc) to get out of bed so long that I don’t think he is capable of making the transitions needed to get to the dr. And I added that I was starting to worry about what I’d do in case of fire.


She immediately launched into a 20 minute lecture about how I can’t say things like that and that if that’s true she has to report to DSS and dismiss him from their services, etc. She’s been trying to stop caring for him since the beginning (really pushes hospice EVERY VISIT) so I am expecting fallback from this statement shortly.


But I can’t be the only person caring for someone with mobility issues who worries about what they would do in a fire. Maybe my mistake was saying it out loud, but is this a concern for anyone else?

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My husband was completely bedridden for the last 22 months of his life, and there would have been no way for me to get him out of our house had there been a fire. Someone in my caregivers support group recommended that I let let the fire dept. know about my husband, so I called the fire dept. nearest to our home, and let them know. I was told that they would make note of it. You may want to try that.
They used to have stickers that you could put on your windows, to alert the fire dept. of a child, pet or invalid in the house, but I believe they have discontinued those because people would move and the stickers would stay behind, and the fire dept. in some cases ended up wasting time looking for someone who was no longer there.
You are not alone in your concern, and you shouldn't be threatened when you voice your concern. Instead the nurse should have offered some suggestions as to what you should do in such a case.
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Yes I would have been able to get my Husband out of the house safely by myself in an emergency.
I have a ramp at the back door that has a French door so I would have been able to get a bed, wheelchair, Hoyer Lift out and down the ramp.
I have a ramp in the garage and one at the front of the house so I would have been able to get a wheelchair or Hoyer lift out.
I would NOT have been able to get him to the basement in a tornado but the handicap bathroom has no windows and the closet in the Main bedroom has no windows. Those would have been places I could have taken him for shelter.

I have to ask why you resist the help of Hospice.
With Hospice you would have the equipment that you would need to safely get him out of the house.
You would also get help in the way of a CNA that would come a few times a week, a Nurse that would come once a week. Either of these would come as often as needed if he needed more.
I would not have been able to care for my Husband the way I was able to with out the help and support I got from Hospice. He was on Hospice a bit over 3 years so if the fear is that "Hospice will kill or shorten the life" that can not be further from the truth.

Getting back to your fear.
Let the Fire Department know that you have a disabled adult in the house. Let them know that he is "bed bound" so that they are aware of that in advance. You might even consider allowing them to place an emergency Lock Box so that they can get in in an emergency.
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BurntCaregiver Jul 2021
Really, Grandma1954,

Your house is engulfed in flames. There's smoke everywhere. You can't see or breathe. You don't have protective equipment for yourself like firefighters do and you aren't trained as one.
Yet, you'd be able to operate a Hoyer lift and get a bedridden patient out of the house? Or push an occupied hospital bed outside into the yard? All single-handedly without assist.
With respect to you, I must call bullsh*t on that.
People think they can, but in the actual situation it's never what we think it will be.
You are one-hundred percent right about letting the fire department know there's a disabled adult living in the house though. Every family should do that.
Every family should keep several canisters anti-fire foam in easily accessed areas around the house. Even if there isn't a bedridden invalid living there. A good idea to be careful and have common sense too.
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How terrible. This nurse's behavior isn't unusual though. Most of the nurses and social workers I've dealt with over the years in elder homecare always jumped at the chance to lecture some family caregiver or aide to death. Not so much jumping at the chance to be a useful resource that actually helps.

First order of business is call the visiting nurse agency who sent her. Tell them that you don't appreciate being threatened by their staff in your house and make a formal complaint against her. Then give her name to your state's nursing licensing board and make a complaint there about the threat. Never allow any homecare staff to make threats or undermine you in your home. When they start bringing up the 'what if's' scenarios like fire, it's for two reasons. 1) They want to bring more of their staff in to run the care bill up higher. Or 2) The interests of nursing providers are also tied up with nursing homes and LTC's they are affiliated to. So if a patient is using homecare company 'A', they are affiliated with nursing home chain 'B' so get that patient in a facility bed, and a round of bonuses go around for everybody. I've seen and heard it first hand. You make the decisions concerning your father and where he lives. They don't. Second, is your father on Medicaid or is his homecare paid for by Medicare and private insurance? I ask this because if he isn't getting anything from the state then you don't have to even let DSS into your house or speak to them.
They will always push hospice because it costs more. I was an elder caregiver for a very long time. Almost 25 years and most of them private duty. On my last assignment the family got talked into hospice care for the elderly client. She didn't need it but it was free from Medicare so the family took it. They started drugging her up something crazy. Serious drugs too. Morphine, halidol, clonipin. The day before hospice arrived she didn't take more than an OTC Tylenol for her arthritis. They had the family convinced she'd be dead in a couple of weeks. Well, she died at home three years later. Social Services tried to get into the house when her husband was living as well for years. They couldn't understand why there wasn't an agency running the show for two elders with money and great insurance. They wanted their care private and it was. When DSS would show up I didn't let them in. I told them every time to come back with a warrant if they were so convinced that these elders were in danger. They never did.
If your father has to go to the doctor, he can go by ambulance. The paramedics bring him right to the exam room. Sometimes they wait, sometimes not. This is how I got my elderly client to the doctor for two years. The ambulance brought her. I followed in my car and stayed with her. Insurance paid for it.
As for you answering truthfully about what you'd do if there was a fire. If it ever comes up, deny it. This is what healthcare "professionals" and social workers do all the time, when they're not actually telling bold-faced lies that is. Tell her agency this when you make the complaint about her threatening you with DSS action.
As for your bedridden father. Could it just be that it's his time and he wants to die in peace? Not in a hospital or nursing home. If you or your help are managing to keep him clean, fed, and meds then tell nursing and hospice to go pound sand. Good luck and I wish you all the best. ~BC
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I imagine I'd do everything within my power to help the bedridden get out of their home. Call 911, call neighbors, try to see if the bedridden client/family member could kick in gear in any way to help me help them. I don't know!

Hospice, home health agencies, and other waiver programs usually discuss things of that nature. What would you do if there was an earthquake, fire, etc.? Would you evacuate? Where would you go? Who would you call?

I addressed something dad did before with a hospice nurse when I was over the care of my parents (decided to use his riding mower) and the nurse went I know how your father likes to try and remain active but if you mention this to someone other than me within the company, he would lose the needed hospice benefits. I listened and never spoke of it again!

You know how we say on this forum, know when you’ve reached your limit and make some changes. Well, this person sounds as if they have reached a limit of some sort and I would be concerned. If this is home health, they will mention if and when they think it is time to transition over to hospice. Ask what they are seeing - like no improvement or the bedridden continues to deteriorate?

I guess if you are in charge, consider hospice. Not all of them are bad. My parents made a big comeback with the addition of hospice. Mom was to be gone the first year hospice was brought on but managed to be around a full three years. I still believe to this day that if I had stayed and kept hospice on she would be with us a bit longer.

Explore the options unless you can tell us why hospice or another company (assuming home health) is not an option?

I’m sorry you felt this was a lecture and sorry that the nurse felt as if she needed to lecture rather than helping you address your concern or telling you why.

Good luck to you and the client/family member!
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Carolann2244 Jul 2021
He’s gained 15-20 lbs since January when hospice did their first evaluation, he’s eating better, he’s awake more of the day- I don’t think he’s likely to die in the next 6 months, He was, this fall, after rehab, when he lost 60lbs in 4 months and refused to eat, but when hospice came in, he said he wasn’t ready to die and has improved in every area but mobility. He just has no interest in getting out of bed or regaining his mobility. I think his numerous falls in the fall did a number on him and his dementia takes away any ability to reason with him.
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Where is this nurse from? "In home" after a hospital/rehab stay? Your insurance company? Because where I live "in home" care with Medicare paying doesn't last a long time.

As soon as I read how this Nurse talked to you, I would have her replaced long ago. I worked as a Secretary for a non-profit Visiting Nurse Assoc. We had one nurse, who meant well, that the clients were complaining about because she kept telling them how do do things. They should be doing this, they should be doing that. My Dept Head had a meeting with all if us, so she didn't single this one Nurse out. She explained that our Nurses were going into our clients private homes. They were to go in and do what they were there for. If time permitted, visit with them. But not "tell" them what to do or shouldn't do.

So, this Nurse was wrong in talking to you that way. She can suggest all she wants but she is not your Dads doctor. If she doesn't want to care for Dad, isn't there other Nurses were she works? I too would be concerned about a fire. She should have been helpful not condescending. So, what I suggest is to call your Fire station and ask if someone can evaluate your home and give you suggestions.

The Nurses I worked with cared for married clients who lived in a trailer. They had a hard time getting them out of their bedroom in the morning because they had a hard time manuvering the wheelchairs out of the bedroom doors. Also, the phone was placed in such a way that the husband, when in bed, would knock it off the cradle and then could not get it. The head nurse had suggested to the daughter that her parents needed to be in a safer place. My boss eventually called APS in. You know what they did, nothing. They saw no problem with the set up. Those people would not have been able to get out of that trailer if there was a fire.
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Carolann2244 Jul 2021
It’s from a rehab stay, he has a catheter so they just come in monthly to change at this point.
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Regarding a fire or other sudden emergency need to evacuate a bedridden person without the time to position the sling, hook it up to the Hoyer lift, etc.: a very nice home health nurse told me that if worst came to absolute worst, use the sheets to drag the person out of bed onto the floor and out of the room/house.

Obviously, this scenario has a lot of drawbacks and would only be for the direst of circumstances.

We also keep a small fire extinguisher in my dad’s bedroom, as well.
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Carolann2244 Jul 2021
Bedsheets I could probably do, especially if one of the kids is here. Thank you!
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You don't mention your father's weight. But the truth is we can never know WHO we could save in a fire and who we could not. It all depends upon location of a fire. Often the opening of a door, the O2 that comes into a room explodes a fire. Depends on construction of the home, a multitude of other things. Best thing to do is
Research on internet: How to save people in a fire. There are many things you need to know. Where to have smoke alarms, how to treat doors and windows, how to crawl close to floor, how to take the sheets of a bedbound person and lower them, and drag them to window or door. Of course ALL this after 911, active fire call.
So educate yourself. And do know that whether we can save ANYONE from a fire is up for grabs. We can but be prepared. You would have trouble in earthquakes, hurricanes and floods, after all.
We should all think in terms of preparedness. I live in California. The media is on about it constantly. So you are thinking worst case screnario. Think it, research it, be as prepared for it, and then know we are in not in control of as much in life as we think we are, and move on with your dad.
As to what this nurse said, it sounds a tad silly on the face of it as you explain it. I can't imagine WHAT she's talking about.
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The RN is a mandated reporter, like a teacher would be. As such, if she can tell that there is an issue in the care plan or in the actual care of the individual, she is required to report her concerns to an authority. For your situation it would be APS aka Adult Protective Services.

It sounds like she has been trying to make you aware of the issues in your dads care plan and is trying to forewarn you that if things continue as they are, that she will have no choice but to report it, to notify APS.

It’s not a threat; she’s giving you a warning.
For whatever reasons, you - as his daughter - are unable to stand back and do a reality check on how tenuous your fathers situation is….. which you describe as he’s bedfast, unable to transition, violent and refuses to see a physician. She knows he will be eligible for hospice….. hospice means additional caregivers come in 2-3 maybe 4 times a week and help in bathing, hygiene, monitoring any skin pressure / wound care issue, medication management, etc. Plus being in any durable medical equipment (DME) needed, Having him go onto hospice also smooths the way for the live in family caregiver to request and get respite care, so that you yourself get a break. All totally a MediCARE benefit.

Why are you refusing to have him evaluated 4 & placed on hospice?
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Carolann2244 Jul 2021
He’s been evaluated. He told the hospice nurse in January that he wasn’t ready to die, and started eating again. He was also in the process of adjusting to new meds for MDD brought on by a missed TBI. He’s gained at least 20 lbs since January. He’s awake more of the day, I don’t think he’d qualify at this point since he’s no longer “failing to thrive.” He just has an unreasonable attachment to his bed and a refusal to leave it that I can’t reason with, due to dementia. He’s only violent when you try to make him leave the bed (or he has a UTI.) I’m not anti-hospice and I was willing to sign on in January, but he’s made a lot of improvement with awake time, appetite and gaining weight, and I don’t think they are appropriate yet,
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Sorry that was to Alva. He’s about 130- 140 right now.
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After watching a few videos about how facilities plan to evacuate in case of emergency I realized that getting someone out doesn't necessarily mead getting them out easily or even unscathed. Evacuation sleds are basically just big toboggans with a belt or two attached to keep the patient from getting dumped out, IMO they're terribly expensive for what they are (like all medical devices) but jury rigging a system based on this would be pretty easy for someone handy I think.
For myself I kept a flying carpet type sled rolled up in the closet, I figured if all h3ll broke loose a few bruises were better than smoke inhalation or flames. Having been close to a couple of "little" tornadoes in my life I was actually more worried about not being able to get to the basement if the weather threatened. (but whatever you do don't mention that one!)
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Carolann2244 Jul 2021
He’s in the basement (a walk out, split foyer home) so no worries there! The flying carpet sled is a great idea, we have one in the shed so I’ll put a rope on it and move it to his closet.
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Stacy's answer is really the most correct.

Unless you are absolutely 100% sure you can get someone out of a burning building, the best thing you can do is exit yourself and call 911. If you fumble trying to get someone out whom you ultimately can't move, you 1) make the situation exponentially worse for the responders, because now you will be someone else who will need to be rescued and 2) you are not available to tell the responders where, exactly, the person is who needs to be rescued, which saves priceless seconds in a rescue operation. Trying to move an immobile adult is different from scooping up an infant or a child. This might sound harsh, but it's far easier to rescue 1 person than to rescue 2. It's the same reason why, when you ride on a plane, you're instructed to "put on your own mask before you try and help someone else put on theirs".

As far as this nurse is concerned: I understand she's a mandated reporter. I was, too. But exactly what does she think APS will say in this situation? If they start removing every immobile senior citizen from their homes based on the metric of "how will they get out in case of a fire?", we're going to need way, way more senior facilities than actually exist. It always amazes me when we, as caregivers doing our level best in extremely difficult circumstances, are threatened. So, you call APS, and then what? I get into trouble, and you don't allow me to take care of this person? And then what happens to my LO after that? Maybe fewer threats and more suggestions on what we can LEGITIMATELY do to make things better might be more helpful to everyone, especially the person needing care.
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Carolann2244 Jul 2021
Thank you! I have been so frustrated. If I had said, he’s declined so much that, in a fire, he’s out of luck, then that’s concerning. But I said, his strength has really declined with refusing to get out of bed, I’m starting to worry if he’s strong enough for me to get him out in case of a fire. IMO I think the neglectful thing is to ignore this possibility, and pretend like everything is fine and dandy but I guess that’s just me. I’m so tired of being made to feel like everything I do is wrong. That’s 100 times harder and more stressful than actual caregiving.
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Your home nurse lectured you for trying to come up with a fire escape plan? Sorry but fire that person. You have to have people around that are positive & kind to both you and your parent. Planning & brainstorming included. It’s hard what we are doing. We’re sacrificing a lot in our own lives & trying to learn & adapt to everything happening with our parent. There are so many different types of agencies that can help. You can enlist a good hospice team, a private out of pocket home health care agency, hire background checked health aides off care.com, etc etc. If you feel uncomfortable with any of them, get new people until you have the right team of caring, helpful people in place. You owe it to yourself & your loved one.
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No. My 110 pound MIL once fell on me while I was trying to transfer her out of the car and took us both down. I cannot imagine trying to move a bedridden person any significant distance and in an emergency no less.

Let your fire department know that your dad lives in the walkout basement. Put extra fire extinguishers around.

Maybe get a gait belt so that you can quickly strap it around him and pull him up and into a wheelchair to get him out after having called 911 first. And if he becomes violent, you must save yourself and leave him behind so that when firefighters arrive they can get him.
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NeedHelpWithMom Jul 2021
I agree. My mom was tiny, but they fall hard! Picking her up was difficult too. It’s dead weight. When the firemen came out, they always sent four firemen to the house. They instructed me not to try and lift her because then they would have two injured people to tend to instead of just my mom.
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That nurse sounds like a useless piece of work with a "license." What exactly was this "specialist" appointment she insisted he needed? Why would she not suggest either TeleHealth or a visiting doctor first? Your dad isn't the only homebound person out there! While maybe he *could* get up/out if he so desired, that isn't the point.

Honestly, I decided I would not provide the care my mother needed, either in her home or mine, mostly due to her weight. I have physical limitations AND she outweighed me by at least 20-25 pounds. If she lost her balance and fell on me, we'd both be in a world of hurt! My place would not have worked as she really had trouble with stairs, and it's a full flight to get in/out, no real way to handicap the stairs OR the bathrooms (both tiny!) Her condo wasn't much better. The front entrance was a couple of steps and the only other entrance/exit was in the finished basement area. Her stairs were worse than mine - I hated those (sad since it's a 55+ community.)

One place we checked out for MC was located on the second floor - I wondered to myself how they would ever get all those residents out, since you can't use the elevator and many used walkers, wheelchairs or were bed-ridden. I was not impressed with any part of that place, but that was a scary thought!

The place she ended up in was ground level and had special fire doors, so they would, during tests, gather them all into those areas (we were there with mom's birthday cake and ice cream at the time!) There were several ways they could get the residents out, with no need for ramps or elevators.

Just voicing your concern about what you would do in case of fire should have prompted her to make suggestions OR find out what services and/or equipment might be available for you. Suggesting, as many here did, contacting the FD to report a vulnerable person and getting their input would be better than threatening you with APS. What purpose does that serve?

If a nurse coming to my house had been that rude and nasty, I would have contacted whoever she worked for and directed them to send someone else, never that one! I had home nurse services after a lengthy hospital stay and they were ALL wonderful. That one you dealt with needs a serious attitude adjustment.

Generally the doctor would order the home services. Can you request they change agencies? I wouldn't want that "B" to set foot in my house again.

NOTE:
What is the oath for nurses?
"I solemnly pledge myself before God and in the presence of this assembly: To pass my life in purity and to practice my profession faithfully. I will abstain from whatever is deleterious and mischievous, and will not take or knowingly administer any harmful drug."

PSHAW on that nurse!
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Of course it is! First question is where did this home nurse come from? No one being a caregiver needs to be lectured. I'd be dismissing her, and as disappointed as I am with the hospice services my mother is currently receiving, I might consider that option, if it is appropriate.
As much as we want to, we can't control everything, and you know what happens. SO you do what you can. Our fire dept has a fire prevention specialist. If you call, they can probably come out and do an inspection to tell you what you can do to make things as safe as possible. For one thing, here, we have been able to rent from the city fire dept a knox box, which they installed on the house. Inside are keys for the house so they can gain easy access in any emergency. They are the only ones with a key to open the box.
At one point I learned about Federal Pacific fuse boxes and the dangers they present in regard to fire. It cost about $2K to replace (we had two boxes) but that diminished our fire risk. And then you pray, and you be grateful for the city services and their quick response because that's their job...to get us out in an emergency. Right now my mom is in hospice, and in a hospital bed in our family room which has direct access to outside through a patio door. I haveno idea if I'd be strong enough to push her out in the bed. You raise a good point. But look, even if someone were in a staffed facility, there is risk. There may be a plan to evacuate, but will they in that moment be staffed adequately? Dump the nurse and contact the fire dept. IF that witch does contact DSAS, you will be prepared with already having a plan and taking action to do the best you can, which is all any of us can do.
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Yes its a concern if the person has to have an upstairs room, I can never understand how long term carers cope with having a LO upstairs - looking at converting a downstairs room for care seems so much easier. However if you are concerned about fire then you could look at the same system as many care homes use which is to have the equivalent of an aircraft evacuation shute which sits in a box until needed and the person can be "sent" downstairs very quickly if the unlikely scenario causing you concern arise.
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The nurse, from your description, appears to have wanted 'off the case' from Day One. This is NOT someone you want in a situation in which you need help. It's the health care equivalent of the real estate agent or attorney who tells you, 'I wish you hadn't told me that', when you provide vital information. They put their own interests above yours. This nurse threatened you, using her status as mandated reporter as a cudgel. She could have used a far more constructive approach but she clearly didn't want to. She should not be in that job. If you can, get rid of her ASAP. And if the entity who sent her resists, get rid of that entity, if you can.
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Michelle2828 Jul 2021
I agree, and gave her advice to report this person to the state College that they are responsible to. This is awful.
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Imho, the home nurse should not have lectured.
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Can you pull you dad onto the floor and onto a sturdy blanket or lightweight area rug? Can you pull your father's weight on this blanket or rug out of the house? If so, you could care for him in case of a fire. If not, it may be time to seek other

May I gently suggest you talk to the agency his home nurse belongs to. It seems that he may need a different nurse. You need somebody who is willing to work with you for the goals you have for your dad, not the goals he/she has for your dad.
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Michelle2828 Jul 2021
I completely agree.
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I actually live very rural in an extremely high fire zone. I worry about how I’d be able to get my Mother in the car.
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Believe me, if there was a Fire your Dad would get up even if he has to crawl.
My 97 yr old Dad with Dementia can barely stand with my help and a walker ling enough to take a couple steps to sit in his wheelchair to transport him to the table a couple times a day to eat.

He wears a Cathiter so he doesn't have to get up to pee.

He gets transported to the bathroom to have a bowl movement.

He's in his recliner 24 7 and sleeps in his Recliner as that is more comfortably for him and easier to get in and out of..

hospital type beds are not comfortable..

he has a good pad in his recliner seat and a good pad in on his wheelchair seat..

He's never gotten a bed sore in the past two years he's chosen to stay in his recliner.

And a couple times a week he's transported to his bed for a bed bath.

You might mention to your Dad a plan if there is an emergency like a house fire.

See what he thinks about getting up and out.
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I had this similar thought this spring when my husband could not manage the three steps up into the house. Thankfully we have a temporary ramp. It’s a great thing to think about too bad the nurse wasn’t helpful.
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Get a new home health agency and request a physical therapy evaluation. They could assess this evacuation issue with you.
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Wow what a awful nurse you have there. I really think you could have a medical malpractice there but as if you have the energy for that.

It sounds as if she needs a supervisor to talk to her. I'm an RN here in Canada, and we have a College for each province. Regular people don't realize this but you can file a complaint with them. I'm sure in the states that EACH and EVERY state has a college that the nurse has to be accountable to. In my opinion, it's a serious issue. I would complain to them (not her employer BUT the College because fundamentally, she's broken MANY MANY rules.

She's going to do whatever she's going to do. But by not being a pincushion for this nurse when you get the time will make you at peace.

Imagine how many others she's done this too. Very sad because they are probably just as vulnerable as you and your father are.

Take care xo
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Of course it is a concern.

Can you lift him if you had to? Even if he doesn't understand the urgency and may be fighting you to stay in the bed?

You have to consider how to get out depending on where the fire is. If in an area you would have to go through to get him out of the bedroom - make sure all windows in the bedroom can be opened. If there are lock bars on the windows, you need a key outside somewhere to get them open. In event of a fire, he might still try to fight you - but he would have to be just forcibly dragged through the window if necessary.

If fire in the bedroom and you can head toward an exit door - again, just forcibly put him in a chair and exit.

Get some fire extinguishers and locate them throughout the house for a quick grab. Make sure you get them inspected as needed - annually probably. Those will buy you some time to get him out.

Try to come up with a fire plan with all kinds of scenarios for where the fire might start. Which way would you go for each scenario? Put a brick or something heavy outside his bedroom window to grab fast if you couldn't get the window to budge. You can always break it. Install fire alarms in all of the rooms in the house - check those batteries often (they have a test button) and maybe set an alert to test it once a month or every other month on your phone.
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I had to report my sibling who had DPOA allowing my mom to live alone after she had fallen 4 times in her home and had to spend time in the hospital & nursing home after the last fall.

My Mom could not get out of the house on her own without assistance in case of emergency & sibling lived 11 miles away which was at least a 20 min drive.

APS finally told him she either had to go in a nursing home or have 24/7 care. It took 3 months to get this done…..she had dementia & was no longer safe.
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