Overwhelmed

[soonerwife]

Hospice said they aren't contracted with Apria so we had to switch?! The RT that came out yesterday seemed very knowledgeable. My only concern is that they are from 2 hrs away so if on call has to come out it will be more than 2 hrs to get here.

What affects blood pressure? My PALS will be good for a while and then high one day and then low on the bottom number?!

 

[lgelb]

I suspected as much, Sooner, but unless the hospice is assuming responsibility for the care and upkeep of the equipment, their contract status is not an issue.

They want to assume this responsibility because evidently that is their particular care model, but you don't have to go along with that. I agree that relying on a DME 2 hours away is problematic; on the other hand, if the equipment is new, it should not need repair, so long as you are changing filters, etc. As for settings, you know we are always happy to help.

That said, to the best of my knowledge, and you can double-check with Apria on this, if you choose to have them continue to serve as DME for the respiratory equipment, Medicare will still pay the monthly rental (if applicable) or for service calls, if Apria bills for the equipment as they have been doing. What they won't do is pay for, say, a home health visit and also hospice, nor for anything coded as "double-dipping," e.g. if the hospice's contracted RT DME also billed for the same service or item.

 

[soonerwife]

That makes sense Laurie. They matched the settings to exactly what Apria had theirs set to. I'm just hoping we won't have any issues. I do change filters and clean the one on the back as well.

 

[Narrowminded]

Sooner - I'm sorry you are having these issues getting started with Hospice. Here, while using the same exacty Trilogy machine, the fact that it is set to vent mode instead of Bipap, keeps me from getting hospice at all. I sure hope you can get the straightened out without too much fuss.

Crossing my fingers that the house closes very soon.

Oh and for Cliff's neck. They do make some braces. Brian could never tolerate one, our PT tried a few different ones, but you never know.

Hugs,

Sue

 

[soonerwife]

We have two different soft cervical collars but he doesn't tolerate it for long. I tried putting a pillow to the side of him last night but it didn't seem to help either.

 

[soonerwife]

FTD continues...

 

[Narrowminded]

Sooner, sorry the collars don't work for Cliff either. IKEA makes a blow up neck pillow like for in a car U shaped. That has helped us at times because it's as soft or hard as you make it.

Sorry about the FTD. I'm guessing at what you are referring to.

Hugs,

Sue

 

[soonerwife]

I am sure you are right Sue... I am still having such a hard time not getting angry an staying angry. I think I may need counseling to deal with FTD.

I am taking care of Cliff as I always do but I am so angry. He has to feel that. I just don't know how to not be hurt and to refrain from reacting.

My DFIL is 89 and has an identical twin brother. His twin brother passed away last night after being in ICU for about 3 weeks. I am so worried about him. He lost his wife of more than 65 years in March of 2016.

I honestly didn't think he would be here much longer when Cliff's mom passed. I really think he is sticking around because he is worried about Cliff and of course his DD is being treated for breast cancer. It's alot of worries for my sweet FIL.

 

[affected]

many hugs sooner xxx

 

[Narrowminded]

Sooner I am so very sorry. So much on your plate right now. Not sure I'd be able to not get hurt and mad either. Please know my thoughts are with you.

I know before we lost my DFIL he was so worried about Brian. I'm sure your DFIL feels the same. I'm sure all of these losses are so hard on him.

Hugs,

Sue

 

[Buckhorn]

Thinking of you Sooner, and sorry you are going thru so much, and to learn of your FIL's heartache as well. Big hug!

 

[soonerwife]

I talked with him about it again... He says it is wrong but he doesn't know why he does it. He was the most disciplined person I had ever met prior to ALS. FTD is not fun at all. I am managing. At least when I talk with him, I feel better about it instead of keeping it all inside.

His uncle's funeral is Wednesday. He is wanting to go. Has anyone used the hoyer to put your PALS in their SUV? Two of his brothers have agreed to come to help get in in the vehicle. Seems like the hoyer should work but then again can you raise it at the right level to clear the roof and still be high enough for him to clear the seat?!

Our kids and grandkids were all here yesterday watching the bedlem game between OU and OSU. It was a nail biter for sure. We had a good time. The house is a mess... I am going with my DS and DDIL to have pictures made of two of their children today. My DD is sitting with her dad again. I honestly would lose my mind without her!!!

My sister came and spent the night Thursday night. I think she is planning to start staying the night once a week. She isn't a lot of help but she is good company so I will take it.

We are supposed to close on the house tomorrow!!! I hope any way. I think my mom is coming Monday to clean as well?! That will be nice since my house is a mess.

It was nice this morning to remember that time went back and hour so I had more time to get ready to go with the kids.

I hope everyone is having a good weekend! So glad Sue had some fun!

 

[Narrowminded]

Sooner it sounds like you had some fun yourself. And aren't daughters wonderful? I really miss mine while she's away. I'm thrilled she is there for you.

That's sweet of your sister, sometimes it's just nice to have someone to talk to.

So sweet of your mom too. Cleaning is huge. A fantastic help.

I'm glad you could talk to Cliff. It is better to get it out instead of keeping it all in

Hugs,

Sue

 

[Buckhorn]

Hi Sooner. While I have never done so (due to a stone driveway), I think you will have minimal problems using the Hoyer to get Cliff into your SUV, especially if you have help! You may want to use the highest of the sling attachments for higher clearance. One helper will need to be on the driver's side of the vehicle. You need to lower the Hoyer seat height to about 2" higher than the vehicle seat. The person on the driver's side will most likely have to pull or swing the Hoyer sling toward's the seat as you lower the boom. Location of the boom will be the issue, and maybe do a dry run with someone? It's really not that difficult, but practicing with someone will let you see if the boom will interfere with the roofline of the SUV. When I use the Hoyer to put my husband into his lift chair, the legs of the Hoyer will not open far enough for me to get the sling as close to the seat as I need it to be. Eventthough I am working alone, I line up the Hoyer, put it as close to the chair as I can and as i very slowly release lift release, I pull the sling backwards toward the chair to plunk Dave on the chair.

Try a practice run with a family member & see if you can clear the Hoyer's boom close enough to the seat to "swing" Cliff in.

Regarding Cliff's FTD and his behavior that has you so angry and upset, I just want to reassure you that your feelings are understandable, and "normal", but to reassure you of what you already know. This behavior is not the real Cliff. He has so little control now & is not in complete control of what he is thinking/feeling/acting upon. Hugs to you gal!!

 

[soonerwife]

We closed on the house today!!! I am super happy about that. One less thing for me to worry about.