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?
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.
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.
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.
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
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!
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.
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.
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.
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?
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!)
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.
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.
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!
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.
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.
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.
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
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.
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.