Any alternatives to Hospice?

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.

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,

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

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

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