In Home Hospice - Chicago Area

I’ve been staying with my parents and it’s clear that my Father’s Alzheimer’s is getting worse at an alarming rate. 6 months ago he was lively and lucid; now he sleeps most of the time, can’t remember what happened 24 hours ago, and we have to work as a team to get him out of bed - a process that rarely takes less that an hour.

I honestly believe we’re over our heads. I need to work and my Mother is not up to the task of taking care of him on her own. When I raised the question of an assisted living facility she quite bluntly and forcefully told me “He’s not going anywhere”. I know this is only because she loves him and wants him to be with her at home.

At some point in the future I may be able to convince her he’s beyond the care we can give him at home, but for now we really need some help/advice with in home hospice care.

I don’t know where to start - do I call their insurance? Do I just look in the yellow pages? How do I determine who will pay for what (they’re not rich and I’m currently out of work). How do I find a reputable provider? Can anyone suggest one?

I’m at a loss. It’s 3:00 AM and we just spent 30 minutes getting him off the toilet and cleaned up to go back to bed. I worry about what will happen when I do find a job, and frankly I have my own family to worry about :frowning:

Where do I go from here? Can anyone recommend a reliable source in Chicago to help us through this transition?

I’m a home nurse, in the Chicago area. I don’t do hospice (haven’t got the training for it), but I do have to help people transition into hospice. Here’s what you do:

Call your dad’s doctor. Tell them, “We think it’s time for home hospice”. 99% of the time, that’s it.* They know that by the time the family thinks it’s time, it was time 2 weeks ago. They will contact 1 or 2 (if you’d like more to choose from, they’ll send more) home hospice agencies they like to work with and a nurse and/or medical social worker will come to your folks home within 24 hours and walk you through the rest.

They will do an evaluation, verify that he’s eligible for home hospice in terms of care needed, prognosis**, family and patient desires*** and safety. They will schedule nurses and assistants to come out and help. They will order hospital beds and undergarments and pain medication and everything else you need.

The hospice nurse, working with the doctor, will probably make some changes to the medications your dad is on. When they get into hospice, we often stop things like blood pressure meds, because the side effects just aren’t worth the benefits anymore. They will probably add pain medication, or switch to more effective but higher risk/more side effects pain medication, if he’s in pain. Vicodin is often dropped in favor of morphine, for example.
*Once in a while, you’ll run into a doctor who resists, and may want to schedule an office visit and/or delay hospice placement. If that happens, PM me and I’ll get you the contact information of a more cooperative physician - one who will come to the home for you, even.

**To be eligible for home hospice, the MD has to be of the medical opinion that your Dad probably has 6 months or less to live. HOWEVER: people move in and out of hospice all the time. The doctor can be wrong, and the world doesn’t end. And given what you’ve said about his current condition, I don’t think it’s something to worry about.

***Contrary to what many people think, your dad does not have to have a DNR to be placed in hospice. He and/or your mom (depending on the legal situation and his ability to make decisions for himself) will be asked about Advance Directives and DNR status, but you CAN be “Full Code” (that is - I want CPR and defibrillation if my heart stops) and be in hospice. Hospice simply means that we spend most of our time and energy on making the patient comfortable; we’re no longer trying to cure him. But if your Mom is still emotionally in a place where she thinks he’s going to get better if they just find the right medication, then it’s probably not time for hospice yet - but it’s still worth having a conversation with the hospice nurse.

Hang in there. Deep breaths. Honestly, you’ve passed the first hurdle: realizing it’s time for hospice and you need help. Once you make that phone call to your doctor, the medical stuff gets a lot easier, and you can concentrate on loving your dad again and saying goodbye, instead of being his nurse. <3

The hospice nurse and/or social worker will also help you figure out the insurance stuff. Sorry, I should have mentioned that earlier. If he’s on Medicare Part A, he has a home hospice benefit, and most private insurance does, too.

Medicare brochure about home hospice.

Thank you so much!

That’s a lot to digest.

I’m going to read it over a few times over the next day and then try to discuss it with my Mother tomorrow.

Thank you!!!

You’re welcome. I realize it’s overwhelming.

Tldr: Call your dad’s doctor. Tell them you want to put Dad in home hospice. Angels in scrubs will show up on your doorstep and make it all happen. :slight_smile:

The thing I’m worried about is your statement that he needs to be within 6 months of dying. I have no idea if that’s true, but I honestly believe he’s within 6 months of never leaving his bed again. Who knows though, he may live in that bed for years. All I know for sure is that he’s quickly becoming in need of care that we simply can’t give him :frowning:

It’s not your decision, so it’s not worth worrying about. It’s the doctor’s decision. You ask, doctor answers. Most of them answer, “sure, hospice is fine.”

If his hospice benefit runs out and Dad is still okay, then your hospice nurse will help you transition him into “regular” home nursing for whatever period of time your insurance requires until you can utilize your hospice benefit again. You’ll still get help, it will just be billed to your insurance differently.

Many insurances don’t have a time limit for hospice anyhow. They require the doctor to sign saying he thinks the patient has 6 months, but it’s not enforced in any way that matters to you.
ETA: And IF your dad’s doctor or the hospice nurse don’t think he’s ready for hospice, they will have information for you about other options besides assisted living: day care, respite care, home nursing (the kind I do, that’s not hospice), community resources, etc. So it’s still worth making that connection and having the conversation now.

{{{Deep breath}}}

Thank you!

I need to get to bed now; we need to get him up, showered, dressed, and out the door by noon for a doctors appointment tomorrow. I’m sure you understand that that means we need to start at about 9:00.

Do you mind if I PM you from time to time?

PM me anytime. I’m not just a home nurse…we just went through home hospice for my grandma. So I’ve been on both sides of this fairly recently.

Get some sleep!

We got him up and to the doctor. He even had something to eat.
That makes this a good day!

But I have another question WhyNot if you don’t mind…
I’ve been talking about hospice care but after doing some reading online I think what we really need is palliative care.

Maybe I’m confusing terms but it seems like when someone needs professional care beyond what family can provide but they don’t seem to be immediately terminally ill, what’s called for is palliative care.

Am I asking for the wrong thing if I ask for Hospice care?

Check with Doctor.

I am not aware of any home agencies which specialize in palliative care that don’t do hospice; Palliative care as distinguished from hospice is generally done in hospitals, clinics or nursing homes. Like hospice, palliative care is directed at relieving pain and preventing suffering. Unlike hospice, palliative care is sometimes ordered while still pursuing lifesaving or life prolonging treatment.

You can certainly investigate regular home health care while taking Dad to a palliative care clinic, but in my experience, very few home health care agencies offer enough staffing for a situation such as yours for very long. Home health RNs like me come in once or twice a week - three times, tops, and that’s only for a couple of weeks. Each visit is about an hour. We’re limited to staffing a nursing assistant (they’re the ones that do bathing and toileting) for an hour or two once or twice a week. The Medicare benefit period is 60 days, and while that can be renewed to another 60 day period, it cannot be renewed indefinitely. Our focus is on teaching the family and patient to care for their own, and to keep the patient out of the hospital when they’re acutely unstable or just come home from the hospital, but they’re expected to recover. There must be a Skilled Nursing need - wound care, tracheotomies, IV’s, skilled assessment, etc. - and when you’re into the land of bathing and toileting, that’s not considered a Skilled Nursing need. If you don’t need an RN to do it safely, if it can be taught to an unlicensed person, it’s not Skilled. If the patient and family can’t handle the care with some teaching, a home health care nurse is supposed to refer you to assisted living, nursing home or hospice as appropriate.

Things may be more generous with private insurance, I’m not sure. My company only does Medicare patients.

If you pay out of pocket, of course, you can hire nurses and caregivers for as many days and hours as you like. Those get expensive very quickly. I don’t know much about that option, but it basically means hiring a person at an hourly wage or salary to devote his/her skills just to your dad. My mom had this for Grandma before hospice; I can ask her more about it if you’d like. I know it was somewhere around $20 an hour for a person who did bathing, toileting, dressing, laundry and light housework, but Grandma was not bedridden yet.

Hospice home care gets you more hours and more people covered by insurance than home health care. It’s really your best bet if your dad’s doctor will authorize it.

What happens in this sort of case: Suppose there’s this old-like patient who lives alone (but reaches the point where that doesn’t work any more), doesn’t have many close family or friends and none within 100 miles, and doesn’t have any financial resources to speak of – only Social Security or SSDI and Medicare. What kind of care services can such a person get?

Hospice? Palliative? Left to rot in his bed at home alone? SSI and Medicaid when the meagre life savings runs out? If so, what will that cover?

He would probably go into a nursing home. Medicare pays for that.

Does that buy you a space in a reasonably decent nursing home? Or a really low-budget place? There’s this notion afoot that the “average” nursing home is pretty bad – and half of all nursing homes are below average!

More to the point: ISTM that the kind of treatment a resident might get depends a lot on who’s watching. A nursing home resident with family or adult children or friends, who will visit regularly and pay attention to how the patient is treated, and pay attention to the general level of goodness of the home – that resident has a better chance of getting better treatment. Or, if not, the family/children/friend can move the patient from one home to another until they find a good place. (I believe that’s what my father did with his mother.)

The patient with NO outside social support will more likely be treated like baggage. Instead of a family member trying to get the guy into a decent home (even if low budget) and then visiting from time to time – The patient with NO support will get assigned to an over-worked, under-paid social worker. Said worker will run down her Rolodex, calling each place in turn, until she finds the first place with an available bed, and that’s where the patient will go.

Thereafter, social worker may visit maybe twice a year for 10 minutes, just to see if patient is still alive. The patient may be bed-ridden, but the staff will turn him over twice a day, so the bed sores will be more evenly distributed. It will be unduly cold in the winter, since they will be skimping on the heating costs. The house doctor will be a flunk-out from veterinary school who shouldn’t be treating your pigs and chickens. (That’s what I thought of the house doctor at the place I was at.) If the patient really needs and wants the best palliative care, GFL! These are the patients that will live and die in pain, agony, and misery, and lonleiness. This is what I think tends to happen most to people with minimal financial resources and NO social support from friends or family to watch out for their well-being.

I lived for a year in a board-and-care home, adjacent to a nursing home. It was a low-budget but fairly decent place, filled mainly with old indigent people, many with NO social support, with no friends or family to visit them. Many of them had been bounced around from home to home, when they weren’t living in back-alley dumpsters. (Yes, there was one of those there.) They landed at this reasonably decent place entirely by the luck of the draw, and they all KNEW it. These are the kinds of stories everyone there seemed to know.

Yes, Senegoid, you are correct. I rather wish you’d start another thread so we can talk more about it elsewhere.

Fair enough. I understood this is kinda tangential to this thread, but put it here out of concern that these kinds of things may prove relevant for the OP’s case or anyone else similarly situated. It’s harsh, but a lot of people need to worry about this. Other than that, you’re right, it should be its own thread.

(Not sure when I will really want to start that thread, though. The topic is awfully nihilistic.)

(ETA: WhyNot, are you inviting me to start a separate thread to talk about this? Or mainly just inviting me to NOT bring this into THIS thread? On second thought, I realize that I’m not sure.)

Kind of both. It’s either off topic here or potentially very upsetting. Either way, I do think it would be an interesting topic to discuss, but this probably isn’t the best place for it. (Completely unofficially, just IMHO, of course; I’m not a Moderator, not even a junior one.)

If you do, I do have at least one tale to tell, but it will probably have to wait until tomorrow, because I’m headed for bed now. :slight_smile:

My grandpa had a massive stroke back in 2010 and was in and out of LTAC units and nursing homes for a while until we brought him home. The first while he was home we had a visiting doctor and home care for him. It was so much work it was insane to be honest, I know of no one that would bring a family member home when they have as much going on as my grandpa does. Anyway more to the point, in October 2011 he was in and out of the hospital again and the home healthcare doc asked us about Hospice and why we hadn’t signed grandpa up for it yet. Most people think Hospice is just for the people that are dying fast and need comfort asap. My grandma was terrified that if we got hospice in we were giving up on grandpa. Well he’s been with home hospice since October 17th, 2011, so a year on Hospice care and he’s full code(wants everything done to save his life).

Hospice sounds like it’d be a good thing for your family. You live with your parents correct? I’m living with my grandparents as well. I think hospice offers less help because I’m here to help out with things. I’m basically stuck here and can’t work because my grandpa is so medically involved that my grandma can’t do it on her own. Anyway, Hospice sends an aide in 3 times a week to give my grandpa a bath and a nurse twice a week to check his vitals. We were lied to by the woman who came out to talk to us about hospice. She said we could have a nurse/aide stay here for a couple hours so we could go out and all that, never happened really because they actually don’t offer that. Make sure you ask them(maybe even speak to multiple people at the hospice office) how long the aides/nurses stay. Is it just basic care they come in and offer or do they also offer to come in and stay with your father for a couple hours or more so you guys can have some time to yourselves.

I worked for a hospice back when dinosaurs roamed, so my input should be weighed with that in mind.

We absolutely required a DNR order, so that is something to check out if that is a potential barrier. Maybe that varies from state to state (or has changed over the decades).

With regard to the “6 months” mandate, yeah, we required that designation too. It didn’t really mean much, though. One patient I remember had been enrolled for at least five years; who knows, he’s probably still around (Hi, Gus, if you’re reading this!).

Frankly, from what you’ve written, zoid, hospice does not seem like the most appropriate fit for Dad at this point. I certainly could be wrong, though. What you need is a team to help you sort out your options: physician, social worker, care coordinator. Dad’s current doc should set up an inter-disciplinary meeting (with you present) and formulate a plan. Bring a big notepad and a spare pen.

I know how difficult this is for you. I wish you and your parents all the best.

(and WhyNot gets a shout-out for a very informative response)