Hospice pros and cons

[Tomswife]

My daughter and I met with the Hospice intake nurse. We have decided not ti use hospice at this time. We would lose our ability to use our specialists- neurologist, gastroenterologist, pulmonologist.
It was also a confusing conversation because the nurse was telling us we can still use the specialists at Summit Health. You can if your need is outside the reason you are in hospice. For example. You break your arm. Yes you can use physicians outside of hospice to care for your arm. But if the need for specialists is related to ALS. No. But the nurse did not tell us that. I called another firm after the nurse left.

The sad thing is that no one knows what they are talking about. No one fully understands their job. They should. But they dont.

So we will continue on. As we have. With me driving the ALS bus, trying to care for Tom.

 

[Mary2]

That's pretty much what I did....drive the ALS bus. Emory suggested hospice for us back in August, but we weren't ready. But we are ready now. The intake person will come tomorrow and sign us up. I am not even sure she is a nurse. She has already received a list of PAL's medications, so I don't imagine this will take too long.

We are going with this hospice because it has an impatient hospice that is owned by the local hospital and has a good reputation. We want the option to use this if we so chose. I have done so much caretaking, I long to be a wife and not be caretaking at the very end. The catch is that either one must go into this hospice directly from the hospital or next be on the hospital's hospice service. It is only a 15 or 19 bed hospice. They only take people 2 to 3 weeks out from transitioning. And of course, they must have a bed available.

 

[MJT]

Good Lord, Mary. So that particular hospice only takes people 2 to 3 weeks from the end? Do I understand that correctly? Does that mean VSED? You are making a loving choice to allow others to take over so that you can act like the wife you want to be. You both deserve that.

I dread the end. We've had 48 hours of utter hell, but I will recommit to being positive, grateful, and strong in honor of you and your husband starting tomorrow morning.

 

[Tomswife]

Mary. In my prayers.
Hospice just didn't feel right. Especially when no one at hospice seems to know what you can and cant do. We will probably do it at some point, but not yet.

 

[MJT]

Tomswife, I'm glad you had your daughter with you, but I'm sorry that the hospice intake nurse was inept. You are making a good decision as well. I hope you find a great hospice that can answer your questions. So much depends on who exactly you get when you enter hospice, and that can vary widely, especially now after the great resignation. Sending love and strength.

 

[lgelb]

It's true that hospice is only for ALS stuff, and Medicare still reimburses for your other care/meds.

Pragmatically, not all hospices want to coordinate care with anyone else, especially if they compete in one or more service types. So if they try to discourage you from using other entities from the jump, it's probably a bad sign.

 

[Mary2]

The inpatient facility takes people 2 to 3 weeks from the end. I don't think it means VSED for patients. Just that their disease is progressing so that they will naturally go in 2 to 3 weeks. The out patient part of the hospice is a typical hospice and takes anyone that meets hospice criteria.

We benefitted from the new emphasis on telehealth. We probably would have gone on hospice in August if we had to go to clinic visits or MD visits. We did Emory by telehealth and then Synapticure by telehealth. And the palliative care has a nurse that makes home visits. All were fine, except I believe Neudexta should have been started earlier.

Pneumonia is one of the reasons we didn't want to go on hospice. We wanted to treat a pneumonia, if one occurred. There was a situation I read about on the forum where, someone came down with pneumonia and the family wanted to treat and was trying to get the patient off of hospice to treat the pneumonia. But the paperwork takes a few days and the hospital refused to treat, so the family lost their PALS.

Sigh...we really stopped using the van. And now the battery is dead. This is the second time this has happened to me!

 

[Tomswife]

Mary. You have a lot to think about and manage. So sorry.

 

[Doing My Best]

I'm so sorry, Mary, MJT, Tomswife, you are all in the midst of such hard moments of decision and change. I'm thinking of you all.

 

[lgelb]

My MIL died in a freestanding hospice facility. My husband and dad died at home in my care. My dad was on hospice. My husband wasn't.

No guilt for anyone, but my PoV is, if you get as far as the last few weeks, there is nothing about dying at home, with or without hospice, that any of you can't do. And the peace it brings will last your lifetime.

 

[Tomswife]

My understanding...its all about billing.
If PALS is in hospice it is 100 pct paid by original Medicare. Not billed through Aetna Medicare Advantage.
If PALS needs physician services not related to ALS, then he can use those services billed through aetna medicare advantage. The care needs to be unrelated to ALS (the condition being treated under hospice) eg broken arm.

If you are in hospice for ALS, any treatment realted to that illness must go through hospice services.

 

[Mary2]

My son is here now for a few days, working out of the upstairs office. We have had caregivers I will never forget.
But I believe the caregiver we have now would not do well with the passing and I plan to let him go beforehand.
I have met friends for coffee and people from the church stay in touch. But largely I feel I have done this alone and I have done it alone for quite a few years.

To sit and hold my husband's hand and rest and pet the dog and look outside at the courtyard sounds enticing to me. But I am not sure I will get what I want. There are detail to consider...the air mattress for example. I don't know if the facility will allow us to bring in our air mattress. My husband felt better yesterday. Perhaps this won't happen right away and there will be a little more time.

 

[MJT]

I hope he has another good day. I hope when it's time, he gets admitted immediately, and they will let you bring the mattress. I'm curious about the live animal, though! I don't recall seeing dogs when my MIL was in a hospice facility. Thank you for letting us into your life. You and Kathy have helped me more than you know.

Kathy, how long will your daughter be in town?

Doing My Best, how are PALS bedsores?

 

[Tomswife]

Daughter lives almost an hour away. She visits with her adorable children about 2 times per week. Ryder is 4 and evelyn is 1.5. The kids always bring a smile to our faces.

 

[Mary2]

The intake Hospice person was an RN. The intake took 2 hours. We still need to meet with a chaplain, a social worker and 2 nurse visits this week I am told. Maybe this will give PALS a chance to talk about his feelings, before he totally loses his voice. It might be a good thing. Myself, I get very tired and wish I could go out and walk during these visits, but know I won't be able to. My son did sit through the intake with us. It has been good having him here.