Visiting Nurse Association helping

[Tomswife]

We were given an order by the Clinic for the Visiting Nurse Association to assist me as CALS with the Peg tube. I was told by the clinic that Medicare would pay for 3 visits.
The nurse came and conducted her assessment. She is approving nursing care, PT, OT, and LCSW care. I am surprised we will get so much help, even if it is short term....about 4 weeks she said.
I used my meat mallet to crush the Rizuloe, the Tudca and Nudexta are capsules. With no effort on my part the pills were crushed finely. I flushed the tube and gave Tom his meds (no plunger! gravity only.) Also learned how to clean and redress the site.
I am confident I can do this. And I was encouraged to call them if I have questions or a non emergency issue.

 

[Nikki J]

Glad everything went well. I think you are going on relyvrio? But if not tudca comes in powder and is a little cheaper that way.

today ( black Friday) tudca is on sale on amazon. Warning if you take tudca orally do not switch to powder. It is truly awful tasting as anyone who failed to swallow a capsule on first try can attest. Also someone once asked about the size of nutricost 250 vs 500. They are exactly the same ( which means the 250 doesn’t need to be as big as it is which is annoying ) sorry for the hijack

 

[Tomswife]

Thanks. Good hijack!
Yes. When Relyvrio comes through the bureaucracy for Tom he would stop taking Tudca cause the same ingredient is in Relyvrio.
I posted about the nursing help in case someone else finds it helpful. And if I can handle the PEG anyone can. Mind over matter.

 

[affected]

I crushed with a little glass pestle and found that adding warm water really helped dissolve the powder.
So glad you feel confident with the peg - they are terribly easy once you are shown.
We only ever used gravity feeding.
Great for the extra services too, take em all, but make sure the PT understands ALS.

 

[Tomswife]

I am writing a follow up about our VNA visits. I am pondering. The Clinic gave the order for VNA to teach me how to use the PEG. The nurse who did the assessment recommended the nursing, PT, OT and LCSW. But....if we did not have the PEG procedure done....I think that we would not have gotten a VNA referral. And I think the VNA referral is helpful.
So I am writing this in case there is someone out there who may need some in home services. I think you need to have a DR write the order. Then perhaps your insurance will cover it. We are aetna medicare advantage.
When my father was ill (years ago) and home bound we did not know to ask his physician to write an RX for short term nursing services. So we had no nursing services.

 

[Nikki J]

You need a reason for skilled professional like a specific need for pt or ot or nursing. Nursing can be quite a few things as well as teaching like feeding tube. Maybe monitoring a new med or blood pressure or a wound like a bed sore or something but I couldn’t just ask my doctor to order the vna without some specific need

 

[Tomswife]

Ah. Thanks Nikki

 

[lgelb]

Yes, Medicare does not provide "custodial care" as a rule, so any nursing services must address a medical need, not just general help.

PT and OT services likewise must be under a plan of care, like a wheelchair evaluation, setting up a home exercise regimen, etc. Once set up, the CALS is responsible for implementing a passive range of motion program, which is very important for minimizing pain.

Not all are ALS-savvy and even those who claim they are I would take with a grain of salt. For instance, out of necessity, for a while we had a bed in a spot where the OT told me I "could not use" a Hoyer. Other equipment was recommended that given ALS progression would have been a waste of money. And clinicians are typically only aware of the more expensive catalogs.

 

[Tomswife]

I am learning help is spotty. Nurse came today. Did not check peg. Was ready to leave. I said- do you want to check ?

 

[affected]

sigh yep

I look after my brother with another neurological issue.
I have a Paid services coordinator.
I have 3 Paid staff who come in for shifts.
I am completely unpaid.
I spend hours every week just making sure people have done their job, including the one who should be coordinating everything and I actually have a fantastic team in place now.

nothing matches the level of care the one who actually loves the person they are caring for I'm afraid

 

[Tomswife]

The Nurse who is the case manager finally came today. She had never seen Tom, and kept switching him to another nurse. (I called to complain. I said I dont want a fake case manager who only exists on paper. )
We have seen 3 nurses. They all have a different approach/focus. Of course, none have ALS experience. This nurse showed me how to clean the PEG site properly. I have to be more assertive and hold it firmly and really get in there and clean it. I have been doing well with the flushing. He gets lots of water.
His legs and feet are swollen. Oedema. I encourage him to stand more and try to walk. But walking is really declining.

This nurse ordered a home health aide to help me bathe him. She did not know why the aide had not been ordered before. (?) Neither do I.

This afternoon the VNA OT person will come. We are still trying to get Tom to use the hospital bed. No luck yet.

The VNA people travel a lot. They drive from patient to patient, and they dont necessarily live in this county. So they arrive often hours after the time planned.

 

[Mary2]

It will be interesting to see how long you are allowed to have the Home Health Aide. I have been given conflicting information about eligibility for Home Health Aides through Medicare.

 

[MJT]

Tomswife, I hope you get a decent case manager. We have been underwhelmed by visiting specialists. Our jobs would be infinitely easier if everyone else did theirs. One more opportunity to practice Nikki's "radical acceptance," I guess.

Why doesn't Tom like the hospital bed? Too "sinky?"

 

[Mary2]

It will be interesting to see how long services can be stretched. Nursing will only be able to stretch the G Tube teaching so far. OT will only be able to go so far. Maybe PT can come and educate you on a Range of Motion program and on how to use a Hoyer Lyft. I have had home health nurses come in for my husband's sore buttocks and they brought the creams and protective patches. I probably could have gotten a home health aid based on this. But as you say, they come at different times, they may send different people. For us, there is a concern over whether the person is vaccinated. And we are doing bed baths anyway. I canceled the home health nurse and buy the creams and patches myself. If it gets worse, I will have them back.

 

[affected]

It can be a nightmare, but just like you learned to be firm and thorough cleaning that peg site, be firm and thorough with this agency and keep them accountable. We shouldn't have to, I know, but if we don't they just believe it's ok to give 50% on a good day.