Any alternatives to Hospice?

elhijo

Hello,

My mom is getting over her 3rd hospitalization for aspiration pneumonia. With the Lord's help, she's getting over it, but both hospitals I took her to have pushed hospice and "home health agencies". Been with two different home health agencies and not all impressed. Seems they can't do much for liability reasons. Seems like they have a lot of patients too.

For my mom, I'm actually curing her with the doctor's advice and adding some creative touches on my part to get rid of the phlegm. We have an appointment with a pulmonologist but it's about 2 weeks away.

Reading on the "good hospices", even those recommended to me by word of mouth doesn't convince me. I don't want people who are rushed to come to my home and agitate my mom more than she is already and basically not do much and leave. I honestly don't want anything to do with these people whether it be at-home hospice or custodial hospice (basically it's like a nursing home).

So other than the whole hospice thing, is there any other thing anyone has tried besides the ER and the hospital? I don't want to take my mom to the hospital again. All they'll do is feed IV antibiotics and keep her in a bed for 5 days and she will struggle to get free from the bed nearly every single hour of her stay. She has to sit to actually pee due to the way she's built but they won't/can't do that due to lawsuit fears and lack of staff. A hospitalization for someone with dementia is hard both for the patient and the family.

So anything else other than hospice that anyone has tried?

The upside to my situation is that I did find a good hospital where I can take my mom if things go really bad. The bad side of my situation is that all the big hospices they gave me have terrible, terrible reviews on Google and it's basically the same thing,: nurse or doctor never showed, or if he/she did had a bad attitude, yelled at my loved one, they knew she/he was going to die soon so never showed up anyway, etc. Very horrible and harrowing reviews. Not impressed with the whole hospice thing.

Any advice appreciated.

As I'm writing this, I wonder if I should just re-enroll my mom in one of these Medicare Advantage Plans? My mom was with ones years ago and I could just take her into their own ER any time I wanted. The doctors were terrible though (most were pseudo competent if not terribly incompetent) but at least they had the equipment onsite to do imaging, etc. and it was very handicap friendly as their clientele was the elderly. I wonder if I could just look up another Medicare Advantage plan that had their own clinic and try that. The sucky part about these plans though, is that you have to fight to get a referral so a pulmonologist appointment that we have now (with a good pulmonologist), would not be possible as with these Medicare Advantage plans you to a) have to fight to get a referral for a specialist and b) it has to be a specialist in their own network with very narrow (ahem, basically non-existent) exceptions.

Thanks. Any advice appreciated.

El Hijo

Jeanne C.

I was hesitant about hospice. I didn't think we were at that point yet. But, at my husband's doctor's recommendation, I had him evaluated. And I have to say it has been an amazing experience.

I don't find the caregivers to be rushed at all. The same nurse comes each week to examine him. He spends time with him, talks to me about how the week has gone, makes arrangements for anything we need (meds, equipment, incontinence supplies - always delivered within a day of the request), and seems to genuinely care. A CNA comes a few times a week to bathe him. The chaplain comes to visit with us every couple of weeks (and would come more frequently if we requested it). A music therapist comes every other week and my husband loves those sessions.

The social worker comes every week to check in and support us. We had issues with the home health agency we were using. The social worker helped us get a new agency that has been so much better. She has also helped me with final arrangements and keeps encouraging me to make use of the respite services.

Anyway, my point is that I hope you reconsider hospice. At least have them explain the program to you and evaluate your loved one. I honestly feel that they have been a blessing for my husband, and for me frankly. You can end hospice at any time if it's not helpful.

If you're determined to find an alternative, the only suggestion I have is a private caregiver. You would have a lot of control over the care, but it is also quite expensive. $30-40/hour where I live.

Lynn24

i totally agree. I had my mother admitted to Hospice comfort care services a month ago and I live that all of my mother’s medical concerns are coordinated through her case manager, RN. She has been a tremendous help to our family. Also the CNA is very helpful and comes to bathe her twice a week. It is worth having the admissions nurse to come out to evaluate your LO. Also the social worker will coordinate respite care if needed.

harshedbuzz

@elhijo Unless something other than dementia is causing the aspiration, then she would be considered to be in stage 7 of the 7 Stage Model for progression hence the suggestion to bring in hospice care.

Aspiration can be tricky as it indicates a breakdown in the brain's signals to the digestive track and a failure of the epiglottis to protect her airway. If you think of dementia in terms of a regression model, full term newborns have this reflex.

This is how my dad died. At the end of the day, we don't know if he aspirated during a meal, later on some chipmunked food or if it was his own saliva. And we were unprepared given that he didn't seem that far along. Hours before dad died, I brought him lunch at the MCF, he was seen by an SLP to address his aspiration (have you seen one yet?) with whom he flirted shamelessly, he excused himself to use the bathroom and then told me all about a visit from my late sister. Dad was not just verbal and ambulatory; he was conversational which surprised the SLP because of the disconnect between his speech and ability to swallow. He didn't seem stage 7 to us, but his body clearly was.

I kind of side-eye the google reviews you read on hospice services. I wonder if those posting were expecting more than what hospice is designed to deliver although in COVID-times there was an uptick in need and fewer people working in all forms of home health. That said, I have never heard of a physician coming to the home (of hospice unit in a SNF/hospice home) to treat a patient. There is typically one in a supervisory position under which the NPs and RNs practice and for prescriptions. Nurses typically stop by once or twice a week, you'd have a social worker, twice weekly bath attendant and chaplain services if desired.

It sounds like you are wanting an old-fashioned model of care with a physician who makes house calls at all hours. Sadly, that doesn't really exist. There are companies like Patina in some communities that function almost like a concierge practice for 65+ but care is almost exclusively by phone, text or online. They do have house calls but I expect that would be an NP. I'm not sure if you would be turfed to the ER by such a practice because of the liability issues.

https://patinahealth.com/about-us

Ironically, the one place you can generally get care to come to your LO is in a care facility that has an affiliated physician. Once dad went into a MCF, we no longer had to take him to the doctor— the doctor came to him. One piece that would likely frustrate you (because it did me) is that the doctor came when he got there. He had a couple other facilities, so he might arrive at the butt crack of dawn or in the evening after dinner for emergent situations. He was able to send mobile X-ray and phlebotomists to the MCF when a resident needed imagining of lab work which eliminated the need to go to the hospital.

There is also palliative care, which allows for treatment, but that is generally harder to come by than hospice although some agencies do both.

Unless you have access to a very high end MAP, I wouldn't make switch at this point. They tend to be less flexible.

HB

Quilting brings calm

I don’t think switching to a Medicare advantage plan means what you think it does. It sounds like you want one of the local ‘ come join our network and visit our ER plans’ . Sure you can go to their facility But going elsewhere might not be covered at all. Getting treatment x could be totally denied even at their facility. If she’s got regular Medicare, she can go to any ER, including the ones you mention. If she’s got supplemental Medigap, then there should not be co-pays. Medicare and Medigap require less approvals and are taken in most any hospital/doctor nationwide. Local MAP are not.

I think you don’t like hospice or home health care because you don’t like what it might mean … that your LO would get comfort care and won’t receive invasive treatments. Invasive treatments that might not work and even if they do, will just prolong the inevitable. She’s likely to continue to aspirate as she progresses. There is no fix that will prevent it in the future and you’ve seen the treatment - antibiotics.

housefinch

I’m a physician. I take care of children, not adults, but have cared for plenty of children with brain injuries or similar issues that also have aspiration because they no longer can protect their airway. Meaning, their brain is no longer working properly to keep food or drink from going into the lungs when they eat and drink. Sadly, the damage from this combination of repeated aspiration pneumonia and the lung damage it does—-plus the many other medical problems caused by a brain that isn’t working right—-are not really treatable. I’m guessing the pulmonologist will have some palliative treatment to try—-those treatments will be delaying her death. They will not really be prolonging her life. I am sorry. I would encourage you to have a frank discussion with your mom’s PCP about what the next few weeks or months will look like, and if you really want your mom—or she would want—-to live extra days like that. Sending you comfort and peace with your decision. It’s heartbreaking.

M1

I am also a physician and agree completely with housefinch. Aspiration is a common end of life event. Bladder and skin infections fall in this same category. You have to grasp the hard truth that she is at the end of her life, and death is not far off. In fact in my humble opinion, it is not to be feared for our loved ones, but accepted as the natural course of things, welcomed as a release from suffering, and our task is to provide them safe passage. Hardest but most important thing we are ever asked to do. The point of hospice is to accept this inevitability and make it as was as possible on everyone impacted by it.

elhijo

Thanks to everyone who replied I still have some things to think about but I don't think I made my point clear about the whole "the nurse never came, mom died alone, hospice was the worst decision we ever made for our family" type of reviews I have seen on Google regarding hospice providers in my area. I've also had people who work at hospice tell me similar things, 1 person assigned to 13 patients. Now that 1 person wasn't the only person who took care of 13 patients, she was a part of a team but she still left that job and found another. I think she said it got to be too much so she quit.

So, if you lived in an area where hospice care was terrible but you needed it, what would you do exactly?

What would you do to make a terrible custodial hospice (where you're loved one actually lives at the hospice) less terrible for both your loved one and for yourself?

What would you do to make a terrible at-home hospice less terrible for both your loved one and for yourself?

Unfortunately the part of the country where I live is known for lots of medical fraud which isn't reassuring. And at this point in the game, it's too late to pack up my mom and move someplace else.

JeriLynn66

Retired Hospice RN here. I worked for a small, rural agency. I had 13 patients on my roster, some were straight home health, some were hospice; but I had a Team of folks (Aides, Social Workers, Chaplins) to assist in the care of those patients. Every Monday, there was a Team planning and reporting meeting to set priorities for each patient/family. Almost all my non-hospice patients had some sort of chronic condition.

If it were me, and I wanted to keep my Mom at home, I would call a few (or more) Agencies to come do an evaluation and then share your desires and concerns. If the agency does not answer your questions to your satisfaction, interview the next one. And always have your back up agency in case you're not satisfied with the care. You can also "revoke" Hospice and go to the Hospital if you so desire.

Based on what I'm reading, I agree your loved one sounds like Stage 7. Taking her to the ER is going to get you the same result each time.

If you need the additional support of inpatient hospice, and there is more than one in your area? I would schedule a consultation and tour and do the same. ASK the questions that are concerning you. In another Hospice agency I worked with, the family was able to stay in the room with their loved one as needed or desired. Again, you only know if you ask.

I had Hospice for both my parents, my Mother in law and just recently asked for a consultation for my Father in law who is in assisted living. I'm a pretty picky retired old lady when it comes to patient care. But, I set my expectations and move from there.

God bless you as you care for your Mom

housefinch

My only other thought is that people happy with a service usually don’t write a review (they get busy, forget to, etc). People unhappy are very motivated to write one, so you may be seeing the effect of that. I hope you find a company that’s a good fit for your needs. Sending you best wishes in this really hard time. You clearly love and advocate for your mom very much, and she is very lucky to have you caring for her.

harshedbuzz

@elhijo

Cobbling onto what housefinch said— it could be that some of those folks who take the time to complain publicly don't understand what hospice does and provides. The nurse who didn't show is inexcusable, but mom dying alone? It happens. Hospice isn't necessarily going to camp out bedside at your home/facility during the active dying process; that honor falls to family.

That said, there are some individuals who seemingly refuse to die in the company of others or sometimes when a specific individual is there. One friend's dad waited until his daughter came to relieve her mom to take a nap. My BIL spent nearly 10 days straight napping in a recliner in his mom's room until his wife brought him dinner and suggested he go home for a shower and change of clothes while she stayed. SIL is an RN and been had been MIL's hands-on caregiver. MIL passed before BIL made it to the parking lot. Some people are like cats and seek privacy; I swear my dad did.

How to make hospice suck less? Keep doing what you're doing. You have been an exemplary caregiver so far. Bringing in hospice will support you both, ideally, keep her comfortable and keep you informed of as the dying process takes over.

HB

elhijo

Thanks to all who replied. I ended up asking a lot of questions pertinent to me and chose a hospice I thought was more legit than the others. I picked two and settled on one that just gave me more real-world information regarding the "medical scene" in my area than the other one. This is a horrible situation to be in. I agree and thank you for the advice you gave which was to ask, ask, and then ask more questions until you're satisfied. One thing about hospice, no matter what they say, you can always tear up the contract and take your loved one to the ER if it's needed. They won't like it but from what I researched/talked to other folks about, they would most likely re-admit mom/dad/loved one again to the same hospice company post-discharge. At least that's how it is in Florida. Not sure about other states. I would completely avoid hospital stays or even ER visits if possible. Those places are terrible for the elderly. I think (but don't know yet for sure) that hospice can treat at home a lot of what an ER or hospital does. See my mom has been hospitalized 3x for aspiration pneumonia and each time they denied her food and water for days while they treated her. In one of those, she was trying to hock (cough) out the phlegm, but couldn't cause they wouldn't give her any water, she almost died. And that hospital had no doctor late at night available. Bad. My sibling and I were heartbroken but there was not much we could do about it. Hospitals have their rule. So, if you can avoid hospitalizations by use of this hospice service, so things don't get to that point, I'd give it a go.

God bless,

elhijo

ImMaggieMae

https://alzconnected.org/discussion/comment/207619#Comment_207619

But if your mother had pneumonia and was under hospice care, they wouldn’t have treated the pneumonia at all, other than comfort care, right? No antibiotics?

SusanB-dil

@ImMaggieMae not necessarily. Hospice for dementia is different than hospice for other issues.

ImMaggieMae

https://alzconnected.org/discussion/comment/220795#Comment_220795

Susan, so they would treat the pneumonia? Or a UTI? Or?

SusanB-dil

yes, they would.

I actually punched it up: Antibiotics are frequently used in hospice care.

Hospice care is comfort care - some infections are definitely NOT comfortable, and antibiotics would be given to relieve those symptoms.

Jeanne C.

https://alzconnected.org/discussion/comment/220796#Comment_220796

Yes, they will treat infections on hospice - it's considered a comfort measure. Antibiotics would be given for a suspected UTI without putting your loved one through testing or waiting for lab results. For pneumonia, they would also provide oxygen and pain meds as needed. The goal is not curing the infection but keeping the patient comfortable. If you want to pursue a curative approach, you would need to withdraw your loved one from hospice care (you can go back at a later time).

elhijo

https://alzconnected.org/discussion/comment/220796#Comment_220796

ImMaggieMae,

I was just going to let this thread be and hopefully would be buried in all the threads. Havind read your question I feel I must answer. Hospice won't always treat with antibiotics. I ended up firing the 3rd hospice, horrible people. Horrible unprofessional behavior, "iffy" doctor-quality, horrible, horrible medical equipment. Horrible medical advice. Horrible all around.

Took her back to the hospital and forced the hospital to treat my mom by appealing the medical decision for hospice and the medical discharge directly to Medicare (mom was hospitalized again due to hospice not providing adequate care). So mom is now much better. She's getting the care she needs now with Home Health. Her medical condition would have been too difficult for hospice or even a nursing home to treat. In this whole endeavor, Medicare, believe it or not, was one of my best friends.

Back to your question, hospice #1 had to 'check with her supervisor' to see if they could prescribe antibiotics. Even if they do, I wouldn't trust any loved ones to them prescribing the right antibiotic(s) or for the right duration. There is an article called How Hospice Became a For-Profit Hustle that the newyorker magazine published online. You might want to read that before (or after) making a decision. My point is, they don't automatically have to prescribe antibiotics, and some may not even do so since they're just there to "relieve symptoms" but not cure the underlying cause of disease however simple or complicated that may be to do.

If your loved one is on Medicare, you have a right to cancel hospice at any time. Question is, if you cancel that day and take him or her to the hospital right afterward, will you be stuck with that day's bill or maybe a few days bills? I don't know. That's something you have to find out from Medicare directly. It gets complicated (I think) if you're on one of these Medicare Advantage plans and want to dump hospice and then go back to the Medicare Advantange plan. I don't know about this. My best advice is to call Medicare and just talk to them about your situation.

From talking to other folks and seeing this from some hindsight hospice is good for like cancer patients who are terminally ill and where there is enough science to know they have 6-months to live. But for Alzheimer's there are way too may variables and sometimes people get better, but hospice is not in the business of making people better. For some people with Alzheimer's it does work out for them and their families but I in good conscience could not recommend any hospice to anyone. If I were you I'd just call Medicare if you have any questions and just talk to them about your situation. Their customer service seems to have gotten a lot better from years past. Remember, as a Medicare recipient you have to right to refuse hospice care at any time (you can ask Medicare to send you their book which lists this and other information you may find useful) just make sure you know how to do it so you or your loved one doesn't get stuck with a huge hospital medical bill if you dump hospice and then take your loved one to the hospital.

Best of luck to you and your loved one,

elhijo

ImMaggieMae

eljiho, Jeanne and SusanB-dil, thank you you much for replying to this old discussion which I found doing a search on Hospice. We have contacted a couple hospice organizations in the past year and are doing beginning steps with one now to see if my DH would be accepted and if I would feel comfortable going with them. I care for him at home and absolutely want to keep him at home for the duration. I don’t want him to die any time soon, but realize the inevitability of this disease. I wish I could fix things and make everything better.

The reason for calling hospice now is mainly because my husband who has been wobbly on his feet and becoming more so. My sister who lives here with us helped me change him in bed a couple nights ago because it was too difficult to try to get him to the bathroom. Fortunately it was only urinary incontinence. I’ve managed to deal with bowel incontinence but have managed to get him into the bathroom and can handle that. He is usually very cooperative, although often confused which makes it easier. But I need someone to show me how to change him in bed (we have a hospital bed through Medicare) and get him to the bed if he is sitting on the couch. He is almost 6 inches taller than I am, and while slim, is not easy to move, especially with all my aches and pains from getting him up in the past. If nurses in hospitals and memory places can manage it, I would think that I should be able to learn to do it as well.

eljiho, I read the article you posted on hospice which is very upsetting. I can see where that could become a problem. It sounds like you have given up on them and are using Home Health Care. Not sure what this is. We have had something like that for a few weeks after ER visits or hospital stays, but it only lasted for a few weeks. They didn’t offer any medical equipment to help move him, should that become necessary. My concern is having hospice come in, bringing medical equipment and then having him graduated after 6 months and having to scramble on my own again, probably buying equipment. He has to have his head raised when sleeping which is the reason for the hospital bed. How often are dementia patients graduated from hospice?

ImMaggieMae

elijiho, I just looked up Home Health Care. It looks like they do similar things other than prescribing drugs. They pay for rental of medical equipment like lifts and wheelchairs, etc? Do they take care of setting up the rentals or do you have to do that on your own? Can you call them for help 24 hours or on weekends if something goes wrong? I’m trying to compare them with hospice.

ImMaggieMae

elijiho, I spoke to Medicare about Home Health care. They told me it was for patients who had a condition that would improve over a period of time. They suggested hospice.

elhijo

Hello ImMaggieMae,

I read your replies and my answer still holds. I cannot in good conscience recommend hospice to anyone. I think more persons with ALZ are being put into hospice when they do not need to be. There are cases of ALZ persons living 10 years+ so Alzheimer's is not an automatic 6-months and you expire disease. I understand the need for help with durable medical equipment and the need to have an on-call nurse if something were to happen in the middle of the night. My experience is that hospice will 'promise' this but then when you actually call the nurse, you have a 1.5 hr wait-time as they only have one nurse for the entire county working that evening. Understaffing seems to be a real problem with hospice but this is something the hospice salesperson never mentions when you're ready to sign on the dotted line.

And unfortunately, you're right. If your husband graduates from hospice in 6 months you will have to give the DME back if you leave a particular hospice or if Medicare decides he no longer needs hospice.

It sounds like you want extra help with your husband given his size and maybe some help with DME. While yes you could go with hospice, if he gets really sick they may not be able to treat his illness or treat it well and your husband may end up in the hospital and pick up a secondary infection. Not saying it's going to happen but that's what happened to my mom.

At this point I'd talk it over with his doctor and see if there is a good Home Health agency that he or she thinks would work. Some do help you with durable medical equipment and can send an aide to the home to help you with your husband but for things like bathing, etc. But the aide won't stay there the whole day as Medicare doesn't cover long-term care -in general. Maybe your state has a plan where you could get some financial help with this. A good resource is the Alliance on Aging. Every state has one and there may be some resource in your area you can call for help. You can Google them to get their number.

Home Health is not a perfect solution either, just saying. I went with a previous Home Health [not the one I'm with now] and made the mistake of making them be the primary doctor and I found out how bad that is. Understaffing is not just a problem with hospice but with Home Health agencies as well. The Home Health agency didn't have a doctor, they had a registered nurse who could prescribe medication under doctor's supervision, but I never met the doctor or even knew who he was. While the nurse was sweet and nice, it took 10 days from the day I put in a call for the visit to actually happen. Turns out they only had a few nurses that did this for a county of 100,000+ persons and they made the nurse drive all over the county. This didn't help my mom's health.

Still, at this point I'd talk to the doctor and see what he or she says. He might know of a descent Home Health agency that you can call and pay out of pocket for the home health aide piece, so you have someone to help you take care of your husband while still keeping his present primary care doctor and keeping real medical care. The doctor should also be able to order DME for you, you don't need hospice for that. But again, if your husband is in a HMO or Medicare Advantage plan, I don't know how DME would work. You would need to find that out.

Sometimes it's best to just chuck it and buy things off Amazon. At least with an Amazon Prime membership you can return most items and get your money back if it doesn't work out for you. They do deliver and can pick up heavy items as well. Just make sure you read the description to confirm if the item is indeed returnable by the seller. Some have stipulations that if you open it, you can't return it. Thing is, more and more DME stuff is on Amazon now and the prices for certain things are coming down. For example, a descent oxygen machine/nebulizer runs about $500 versus the ones hospice use (which were loud and terrible), and cost $2000. A descent suction machine looks to be $150 off Amazon versus the clunky and loud one the hospice had, that retailed for much higher and had to be replaced on top of that. I just looked up a hospital bed and some are as low as $599, some are more depending. The good thing about Amazon is they do offer delivery, and they do offer a credit card. Come think of it, there is Amazon Health where you can see a provider either virtually or in one of their clinics. It's a new thing they have called Amazon One. I mention it in case you find yourself in a lurch, it's an option.

It's hard though I understand if the person you're caring for at home is larger than you. In my case my mom is shorter than me and I can carry her etc. But still, I can't in good conscience recommend hospice. You might want to call Medicare again and just state that you want to keep your husband at home but need help with him and just ask if hospice if your only option. You might get a better, or more complete answer, from the rep. I had to call more than once myself.

But the decision is up to you as his wife. It may be that you have to place him in a facility which brings its own set of problems. If you go the facility route, try to go there every day or every other day and just keep an eye on him and examine him to make sure basic hygiene is being taken care of all around. Those places tend to treat patients better whom they see loved ones showing up at the door to visit. I got this advice from a placement advisor at a facility over 10 years ago. I think the lady was right. My situation is different as I can literally pick up my mom and move her and provide things she needs all with God's Grace. Other people's circumstances are not the same I know. Still, I can't in good conscience recommend hospice to anyone.

Don't forget prayer -too. It works.

Godspeed,

elhijo

ImMaggieMae

https://alzconnected.org/discussion/comment/221124#Comment_221124

I would never place him in a facility. This is his home and this is where he will stay. The few medications he takes now seem to work as well as can be expected and unless there is some magic pill that will cure him, I think we’re good with meds. He has original Medicare and supplemental and drug coverage so doctors and hospitals are covered. What I need is to be able to avoid ER visits when something goes wrong. It takes days to get into any of his doctors and with the incontinence and difficulty walking it isn’t easy to do more than a video visit.
Most, but not all people who post here seem to like hospice. I need someone to call after hours, or during the night if there is a problem. Does the Home Health you use provide that? Medicare told me that the Home Health they provide is for a limited amount of time, leading to an expected positive outcome. As far as I can determine they don’t prescribe drugs. I also need someone to show me how to care for a bedridden patient. He seems to have improved in the past few days but it’s impossible to tell if that will change again a few days from now. Nurses and caregivers in facilities and hospitals seem to be able to manage this, so I think I should be able to learn and either buy the equipment for lifting or get a doctor to prescribe it. But first I need to know what’s required.

Thank you so much to everyone here who has replied.

terei

There is no downside to have him evaluated for hospice + I would encourage you to do that immediately.

Ci2Ci

https://alzconnected.org/discussion/comment/207619#Comment_207619

Hi, elhjo. My mother is in SNF in Central Florida. She might be at the point of hospice eligibility. (She's currently recovering from 1-week hospital stay for severe sepsis; so, a bit more time to see if some residual issues are permanent.) I'd love to have any personal recommendations for hospice agencies and/or SNF in Florida, if you'd like to share by message. I also desperately want to xfer her to another SNF, especially if she is nearing the end. So, open to suggestions there, as well.

elhijo

Hello Ci2Ci,

What I'll say I'll say on here since it might help someone else in a similar boat.

You are in a very tough situation and my heart goes out to you. I am afraid I cannot recommend the hospice route as my mom almost died because I went that route. But, my mom's health condition is not like yours. I'm afraid I don't know much about the Central Florida area but if you have made up your own mind about hospice, what I would do is find the local emergency number to 3 hospices, like the number you call in the middle of the night to request an emergency nurse from the hospice to come to the home. When you call them, gauge how professional (or more likely un-professional) they are and when you make the choice for hospice, choose the least-worst option. This is something you can do if you are a remote caregiver and are not in Florida which it sounds like is your situation. Now, there was a lady I saw in an Alzheimer's documentary once that mentioned a facility in Central Florida by name. Even though she had had issues with the facility, she did say that it was basically a good facility for her husband medically. They just referred to her a helicopter-wife which she didn't appreciate but she was only trying to look out for her husband and that comes across on the video. I would give you the link but I lost all my bookmarks recently. But if you google Dr. Natali Edmonds, you'll find Dr. Edmonds' site. It was the video about the wife who was caring for the husband who had dementia where the wife was told by the family doctor that she should go ahead and get a divorce. Shocking that the doctor would say that and Dr. Natali's mouth dropped open when she heard it as you'll see in the video. If you email Dr. Edmond's via her site, she may respond with the link. The wife in the video was from New Jersey and they had relocated partly to Florida. I don't think the facility the wife names was an SNF but more like a Continuing Care facility, but it was in either Central or North Florida, almost certain it was Central Florida.

For SNF's you can always go to the Florida AHCA website where the state gives you a lot of information about facilities. Link is here for your convenience: https://ahca.myflorida.com . You can then click on the Find A Facility button and go from there. Given Hurricane Helene is set to hit the Gulf Coast of Florida this evening, you don't want to choose a SNF right on the water or like even 1 mile away from the coast. You want something more inland with a good evacuation plan ready where the saleslady or salesman you talk to can verbalize to you the specific names of hospital(s) or other specific facilities where they send their residents to in case of natural disaster such as a hurricane. If he or she doesn't know offhand, call another facility. This is something they should know right off the bat if they're at least semi-professionally run. You also want to confirm that the SNF has a backup generator in place in case of power outages as that is now Florida Law for these types of places. When hurricanes come, the power dies, and you don't want your loved one to be in a shoddy or unprepared facility for days post-hurricane without electricity (i.e., no AC). No air-conditioning for the elderly is deadly especially in the Floridian climate. When hurricanes hit, some areas in Florida don't have power for days. Some areas do get their power restored in a few hours, but it takes days for others.

Lastly, also try reaching out to like 3 churches near where your mom lives now even if you're not a religious person. Call up these local churches and ask to speak to someone who either volunteers or works part-time in a SNF, explain that you're looking for input on local SNF's. I did that myself for hospice and found one connected to a local church where I live. That hospice, because it was connected to a church, was the most transparent out of all the hospices I had the misfortune of coming across. The person I spoke there seemed sincere about what the dying process could be like and didn't sugarcoat things. By that time though I had decided hospice was not for us but I'm glad I at least found this place. And yeah, do try to visit any and all hospices or SNF's you seriously think about putting your mom in, in-person, at least one time before you sign on the dotted line. What I found works best is to show up un-announced and ask the guard for admissions and sort of do a walk-around on the place yourself that way you're not shown just the pretty parts of the place which happens all too often when you request a "tour" of the facility. You can always request an official tour later on after you've scoped out the place yourself.

God-speed and I will say a prayer for you and your mom.

Best regards,

elhijo