LTAC, acute care, skilled nursing: How do I make the right decision?

[Nicole-my grief journey]

LTAC, acute care, skilled nursing: How do I make the right decision?

If I have a choice for my mom, I’m not sure what to do. The care manager said skilled nursing (I believe it’s because of insurance, not because my moms best interest is being taken care of). The care manger wanted me to make decision about where to put my mom after the hospital without guiding me or going over a discharge plan. She shut down every question I had with a simple, “off put”, bothered attitude of “She won’t qualify”. I asked her to please explain this to me (since my mom has not been evaluated by prospective after care). I feel she wanted me to name 3 skilled nursing places without considering specifics of my mom’s actual needed care.

 My mom has an unbridled ng feeding tube, can barely take in “by mouth nutrition” (and they started tapering down her bolster of nutrition), which was helping her. Starting today, she received a wound vac on two wounds. One between her stoma and incision sight and one in the incision site. She can’t do the PT they’ve tried and has severe edema. The PT would help this. She now has a stage 4 pressure ulcer on her coccyx that is currently showing the bone there and had severe bleeding through nose three times today. So, I asked them to stop her blood thinner temporarily. They didn’t even tell me they upped it a week ago. I’m not there in the mornings and they’ve been injecting her with lovonox. She has blood clot in both legs and one in shoulder... They wanted her to do chemo but she can’t due to bad blood work...she has elevated WBC, platelets are off, hemoglobin off and nutrionally depleted. I asked for the surgical team and wound care to decide what’s best. I was told that the care manager will handle it, but again that’s not what’s actually happening. In my opinion, she’s in really bad shape and somewhere like skilled nursing isn’t enough. The care manger got upset when I said that I want her evaluated by LTAC. She shut me down again and I said shouldn’t we have her evaluated first to make sure?  If she does qualifiy for LTAC, it is like another hospital room (which mentally is hard), but she would see doc every day and wound care team. It would be less PT and OT than short term acute facility that i like, but short term acute won’t take her if she can’t do 3hours PT daily. I feel that we are stuck and I don’t trust care manger because she said my mom will get rejected from LTAC without even fully knowing the extent of my mom’s needs. I say “without knowing” because she didn’t even know my mom’s Duo tube was unbridled. Therefore whoever takes her needs an xray machine incase it moves or comes out. A lot of Skilled nursing won’t take you with ng through nose and def not take you if it’s not bridled. I’m scared they will force us to skilled nursing where there is only once a week wound care, Doc onsight once a week only and no xray machine to check on the ng tube if something happened with it (this is providing I found skilled nursing willing to bend that rule. What do I do? There is a good LTAC, but a really great short term acute care place. I’ve read all the websites and got educated in medicare.gov, but am not sure...I know a non-hospital environment would be good for her mind...but LTAC seems appropriate from medical standpoint. LTAC is 25 days and acute is 17 days and skilled nursing is an unknown amount if time (if something goes wring at skilled nursing, she would have to go back to ER). And...after all of this, she needs chemo. She’s not well enough to receive it right now. I’m stressed, scared and trying to advocate for  her rights. I just don’t want to make the wrong decision and screw things up.  

[reader]

Dear Nicole,

You are very loving and caring daughter. Please know you are doing the best you can under the circumstances. I feel your pain because I too wanted to do what was best for my dad. Its really hard.

I hope others with more medical experiences can give their perspective.

Take care my friend.

[Nicole-my grief journey]

Dear Reader,

Thank you. It is really difficult. Especially when you love them and are watching them go through these things. I think about people who don’t have advocates and feel so sad for them. I’m fighting my hardest for her. I too hope others will share their experiences. We need each others help. 

 

Here’s my latest for those wanting to read on: The hospital she was in, neglected to document properly and so insurance denied her LTAC and so then I told the social worker I want the doctor to call insurance and do a “peer to peer” call. I let them ALL know if they denied her again that I would then be appealing their decision. That I was not going to stop trying and I listed all the reasons she needed to be in an LTAC all the way down to her bloodwork and our goal for her. Once the doctor did the peer to peer she got approved! Others should know this so that they can also take these steps if they feel they’re not getting what their loved one needs. People should also ask for a copy of the discharge plan and read it before leaving the hospital. My mom’s papers had her pressure ulcer left off! Measurements missing, depth, and details of her incision site and ostomy wound! I asked for the copy and read it before she was transferred thank god. It doesn’t end there though...LTAC said it was a 4 to 1 nurse to patient ratio and although I told them our specific needs and said “ok, I know you say 4:1 but do actually have enough staff that’s not a high turnover and calling off a lot to resposition her and show up for wound care?” And they said “YES”, they in fact, have not had enough staff so far. A lot of them go to change her wound vac, see how complicated the wound is and then say m “Oh!, I need to get actual wound care in here because I’m not sure how to do this one. I’ve done packing and a vac here or there, but nit on tbis scale.” So, I write this to give others the heads up about what can happen. Most people just get sent home and are right back in the hospital within days. It’s imperative to do as much research as you can to make an informed decision and even then, check that once they are placed, they are getting what they were promised. Staff is so busy that most times they don’t even read the patients history and make generalizations. I’m not saying that this is all facilities, just the ones I’ve been too. I know that there are a lot of hard working, caring, highly trained professionals out there and I have profusely thanked the ones I’ve come into contact with and written letters about how great they were and dropped in the thank you box at the hospital. Praying for more professionals like that and people to be less overworked so they can keep caring about their jobs and get back to the reason they started in healthcare in the first place.