Home Health Care vs Hospice

mommyandme (m&m)

So we’re faced with the daunting real possibility that hospice is going to discharge mom in a couple of weeks. She’s in “the yellow zone” meaning she’s stable and they probably can’t do more for her than I can, so they say. I just pulled the trigger on the hospital bed a week or so ago and still getting used to it. Oh well. I just can’t stand the thought of losing them right now. My anxiety level has definitely increased these last couple of days. 

Tuesday, the day I found out, I was in a doctor appt of my own and told our GP this news and she said she’d be happy to make a referral for home health if I needed it. Through my mask I was dumbfounded, deer in the headlights look. Had no clue what that meant. We had an awkward silence cause I was clueless and fumbled for the words to ask. One of the few times in my life I was speechless.  

What I’ve found out so far is that medicare may cover some home health care services. Still can’t figure out what that looks like in helping me. We did use it for PT and OT when I first brought mom to my city but we’re way past that type of service being valuable. 

I’m very confused. Does anyone have insight for me on this? Have you used Home Health Care for your LO other than the therapies? Did medicare cover it?  

Just Ugh! 

loveskitties

I don't have any info on home care, but you can ask her PCP or other attending doctor to "order" a hospital bed.  If they do, then Medicare will cover most or all under durable equipment.

mommyandme (m&m)

Thank you.

Olly_Bake

Sorry you are having this Ugh moment! I am hopeful that the hospice company you are with will find a way to keep your mom on and keep going with the services you desire and find most helpful.  If not, would there be another hospice in your area you could contact for an evaluation?

For regular home health, we did have to get a referral (hospital did it for us but a primary care doctor for your mom can order as well). We have been off of hospice right at six months now. With the renewal, the order will have to come from the primary. Hospice also is by referral, at least the ones in our area.

Our home health agency does six weeks at a time and then you have to requalify and renew. We just started the process to recertify for another six weeks and await approval. Our hospice goes three months at a time the last time I spoke with a couple different companies. 

The first few weeks after the hospital stay the nurse came out physically twice a week and then went to a once a week physical visit and then a phone call to make sure things are still going well that same week. We could call for a nurse if things took a turn. Our hospice nurse use to come out twice a week period and up to three times a week when ill. More if called.

Our speech therapist comes out once a week to monitor eating and swallowing. Then moves on to doing mental activity (kind of like the things you do to make sure memory is still functioning – counting money, naming people from photos, naming vegetables, telling time on clock, calendar, his parents names, wife name, naming objects, writing, reading, etc.)

The physical therapist comes out once a week. Really not getting much from that part of the service except training on how to use things like the lift, how to get him out the bed safely, and other items that could be ordered to help with other issues he is having with arthritis and pain. The physical therapist put in the request for a lift and then the doctor signed off on the order. It took a week to get to us.

The doctor ordered us a hospital bed and was able to document why it was needed so that it would be covered. It will raise the legs and head by remote but we have to use the crank to raise and lower the bed itself. As soon as we finish paying off the guardianship balance in a few months, I will be paying the $100 dollars a months, out of pocket, so we can have a bed where the remote will control everything (they will swap beds). The company states, after a year, the hospital bed will be ours to keep. It is not at all a fancy hospital bed that you see in the hospital. We also got the alternating pad and pump system for the bed as well. That took about two weeks.

Our home health company is contracted with a supplier. The supplier contacted us to see what all we needed and then submitted to the doctor to sign off on so those items would be covered This is covered through Medicaid. Our supplier says original Medicare does not cover diapers but some Medicare advantage plans will with their extra help program (the catalog they send).

We receive diapers monthly (love and receive an ample supply), bed pads monthly – don’t like so we purchase a store brand and use the ones they send as bibs lol, a jar of butt cream monthly (don’t like – we purchase the Medline zinc and use the other on the feet because it just reminds me of Vaseline), a pack of gloves every other month (love), and a pack of wipes monthly (don’t like and purchase a store brand – the ones they send I just use for cleanup). 

They also said they could supply us with bedside commode and other things but we already had that and he is no longer able to clear the tub to use a shower chair not even the long one where he could slide in due to size of bathroom. All of his oxygen supplies we got a doctor order and has been on that for a while though.

Home health said they could provide aids but would not because dad already receives 9 hours a day with the Medicaid waiver program. I still have to manage meds and do the pickup unlike hospice that usually manages both task on meds.

Dad is on original Medicare (not the Medicare advantage ones) and Medicaid.

As far as hospice vs. regular home health, both services are wonderful

Oh one last thing, regular home health can do x-rays from home. They were going to do one for dad last week but the primary decided he would prefer they be done at the hospital. That was fun getting him in the car. Hospice always said they could do x-rays at home but would never follow through in our case only. 

So Medicaid for supplies like diapers and original Medicare for regular home health. Hope this gives you a good look into regular home health but hope you get hospice back as you desire.

​fesk

I am not certain exactly what Medicare will provide in the way of aides. I don't think they do.

I do know that Oily is correct on the hospital bed. They basically rent it to you for 13 months with Medicare paying. After that, you own it. Also, correct that Medicare will not pay for a fully automated one. I went ahead and got that anyway.

Medicare will cover one wheelchair (not certain about the length of time). That's also rented to you for a number of months with Medicare paying and then you own. Amazon seems to sell the same items. In my case I needed a regular wheelchair but, because Medicare paid for a transport chair, they wouldn't cover the regular one. The medical supply store was charging over twice the amount as Amazon was for the same chair. So, if you have to buy something out of pocket, do some shopping around.

The doctor needs to write the script for these items. My mother was on hospice briefly. What I did was use that same equipment provider that hospice used initially for what I needed. So, I kept the bed she was using.

I've been able to find a physician who will come to see my mother at home along with a podiatrist. The MD will come initially and then the follow up is usually with a physician's assistant or nurse practitioner. I believe the doctor will come back out if needed in the future (he has once already). They have sent people here to do bloodwork, urinalysis and x-rays. Medicare covers these costs.

As far as supplies go though, we've been paying out of pocket.

Olly_Bake

Hi Fesk. I spoke with the home health agency we use today after reading your post along with another one. The response was yes regular home health can provide aides just like hospice. It is usually only for one hour and usually up to three times a week for baths, etc. It was also stated that most agencies just can't keep people in those positions which is why most just don't offer.

Fesk I sure wish we had doctors and other service providers that could come to the home. 

Another way to re-verify is to go to Medicare website.

M&M I hope you and your mom gets hospice renewal.

​fesk

Oily, when you say home health, are you referring to agencies? Like Home Instead, Bayada, etc. or something else? I will check Medicare's website, but I wasn't aware Medicare would pay anything towards a private caregivers hired.

Olly_Bake

Yes an agency. AccentCare, Deaconess, Compassus Hospice. You know how hospice sends out an aide for PCA through their agency. Well our regular home health agency said they could do the same if they could keep people in the positions.

{but I wasn't aware Medicare would pay anything towards a private caregivers hired.} Are you speaking of hiring a caregiver yourself and then Medicare cover? If so, that is not what I was suggesting.

​fesk

Ok. That makes more sense to me. Most agencies have 3 or 4 hour minimums. There's a shortage of caregivers by me so the agencies really don't have anyone. And yes, I thought you meant Medicare would cover an aide from an agency which I didn't think they would.

Thanks for the clarification. 

mommyandme (m&m)

Thank you fesk and Olly_Bake!

So far my research hasn’t been very fruitful.  I think I need to look into her Medicare and advantage plans more closely.  My mom won’t qualify for Medicaid. Waiting on the doctor to let me know what she can and will prescribe. 

One thing the hospice nurse, CNA and I deduced yesterday is that my transferring mom in and out of her bedroom to the living room each day is likely counterproductive to her comfort.  She seems quite frightened by the process each time. Automating her recliner gives her fear, standing gives her fear and every step in the process from there. I’ve been thinking that I’m helping her quality of life by doing these things but since it only produces fear and anguish, why am I doing that again?  For me I guess. So I’ve come to another decision.  I’m going to move her hospital bed into the front room whether or not hospice stays on.  Also, I’ve had some trials with the transfer process from the help that comes in.  Moving her bed will take care of that problem too.  They said a catheter may be helpful too with skin breakdown etc… ack! 

I just didn’t want her bed bound yet.  Seems so permanent.  Can’t go back. I hope to get her up still but who knows.  Muscle atrophy will likely increase.  Should I do this?  I feel like I’m making some permanent decisions but are they for me or her? I’m so nerved up!  

​fesk

m&m, I understand how you feel. I struggle too with wanting my mother to retain what abilities she has and I, like you, try to provide her with the best quality of life. I know I can't win against this disease, but I think I'm still trying at times. Each loss she has is heartbreaking.

I did recently have PT come in and she was able to improve her mobility, but she was only having issues with that recently. That may be why she was able to improve. I have her engage in what exercise she can daily. I think it is better for everyone if she is able to assist, so I wouldn't put this in the category of doing it for myself. It benefits everyone and makes it easier to get help.

I have always had her do as much as she could and have encouraged that even when there are some difficulties. The tipping point for me is if I see frustration or distress. That's when we change/adapt the situation to remove that.

Please try to hang in there and don't doubt yourself so much. (I know - I doubt myself too.) It's sounds as if you are doing a great job. It's just that watching someone decline like this is overwhelming. 

quartlow2

These are such tough decisions. It sounds, to me, like you are considering her comfort more than yours. Encourage her but don't push. I think our LO gets closer to God at this time than we realize. God gives them peace to just be still. I pray for your peace too. He's got both your mom and you. During a particularly tumultuous time I heard a quote that hit me hard, "Anxiety creates it's own chaos." Man, did I notice that when I tried to push things to go my way. Sometimes I just needed to (mentally) step outside of what I thought I knew and follow directions. Sometimes I'd end up doing it my way and sometimes not. But in the anxious moments I wasn't making the best decisions. If you haven't considered an AL facility, you might want to. Our family and our parents benefited from the 24\7 staff rather than our sleepless nights.

Sending you hugs!

mommyandme (m&m)

quartlow2, thanks for your uplifting comments and reminders. My plan A is to keep mom in this house behind ours for the rest of her days.  My thoughts are that mom could only be accepted into a SNF at this point. She’s not mobile and is completely incontinent.  Isn’t that a disqualifier for MC? Anyhow… here we are. 

fesk, thank you for your connection and support.  We do seem to have some parallels with our LOs.  This week is going to be busy getting things figured out. I really appreciate your insight, thank you for sharing your personal experiences. 

I just can’t stand when I find myself wishing this was over already, being envious of those that have moved onto stage 8.  Yet I’m so incredibly sorry for what they’re going through too.  Then feeling quite sad when I imagine not being able to share anything with her anymore, her great grandchildren etc… her smiles and misplaced laughter.  

Some days are just agony.

quartlow2

mommyandme (m&m) wrote:

"She’s not mobile and is completely incontinent.  Isn’t that a disqualifier for MC?  

I just can’t stand when I find myself wishing this was over already, being envious of those that have moved onto stage 8.  Yet I’m so incredibly sorry for what they’re going through too.  Then feeling quite sad when I imagine not being able to share anything with her anymore, her great grandchildren etc… her smiles and misplaced laughter.  

Some days are just agony."

No, mobility and incontinence are not disqualifiers....at least where my parents were.

re: feelings - You are not alone in those feelings!

mommyandme (m&m)

quartlow2, thank you again!

Olly_Bake

M&M, How are you and your mom? I am on pins and needles with you waiting to hear the hospice decision. Have they made a visit this week to give you an idea which way they are leaning?

mommyandme (m&m)

Olly, thanks for asking/caring.  Well, it seems they are keeping her on with the caveat that they can discharge at any time, not just after the two month recert period.  Since I will be moving her hospital bed to the living room and keeping her in it, she requalified.  Although I must say I did not decide to move the bed because of hospice.  I decided to move the bed because my mother barely tolerates the transfer process.  All the transfer process does is bring her to a different room to sit some more.   Also now without the transfer issue the aids can change her where she is.  Win/win.

I’m not sure what this new weeping edema thing will change.  Hope we can get a handle on it. 

​fesk

I'm glad hospice is continuing for you. Hopefully, they will continue to certify. It will give you some breathing room to research too. I also hope you the weeping edema is under control soon.

mommyandme (m&m)

Thank you, all of you! I can’t express how much I appreciate your support.

Chammer

When MIL with dementia was placed on hospice, I expressed my concern about the length of time they would be able to provide services since MIL was physically doing well.  Per the nurse at that time (2016), they would not have any difficulties in re-certifying her as dementia is a "terminal illness" with no chance of recovery even if she lived for a year or more after admission.  

MIL was late stage 5, early stage 6 at that point.  As it happened, MIL, shortly before admission to hospice, began to refuse all meds (she had mild hypertension, metabolic syndrome, and took meds for pain and anxiety) - she would throw her pills or throw her pill sorter and scatter the meds everywhere so the decision was made to not fight her about her meds and after admission to hospice, she very quickly declined and passed away within 4 months.  During that time any meds she received were crushed and stirred into ice cream which was the only thing that was guaranteed to be completely eaten and bowl scraped!  I joked with her that she was one special lady to get to have ice cream with whipped cream for breakfast every morning and a treat after dinner every night!  She would look at me slyly and sort of "wink." 

I see that your mom has been re-certified for an additional 2 months, so hopefully, they can continue to keep her on service. 

May flowers

Good news on the recert! Moving the bed makes sense and I can totally relate to the transfer issue. My LO does not fight the lift, but gets a death grip on the sling straps and bars. He will not eat in bed at all, so I don’t know what we will do.

I hope the weeping issue goes away soon.

Olly_Bake

M&M - {All the transfer process does is bring her to a different room to sit some more.} Yes, it is hard to see them mostly just sit or just be in bed. My dad was a very active man so that makes it hard for me. For me, I have just decided to let him be in bed most of the day and then get him out of bed some on the noon side or just before the aide comes in the evening and then she can get him back in bed just before she leaves at bedtime. 

So would your mom be able to do something like that or just once or twice a week?

MayFlowers - [My LO does not fight the lift, but gets a death grip on the sling straps and bars.] You gave me a good laugh with that one. Oh boy that death grip is...wow. I know all about that death grip.

May flowers

Olly, I saw in your other post about your dad’s grip. It’s no fun trying to move them when they are holding on to something. Yesterday I was lifting him from the portable toilet, looked over and he was holding both armrests and towing it along.

When I think of it, I grab my pool noodle section for him to hold. Helps rolling him in the bed too

mommyandme (m&m)

I do hope to get mom up from the bed at times.  Not sure how it will all come together yet.  The room transfer for the hospital bed is this afternoon.  Just writing that made my stomach butterflies flutter.  Fortunately my brother is here for a few days to help me and help rearrange furniture and organize.