CALS Roll Call Continued

[Doing My Best]

MJT, thank you for the pillow under the hip idea. I will do that. He is actually comfortable in the sling of his Hoyer and is happy to hang in there for ½ hour sometimes, which totally removes the pressure! So I've been doing that now and then too. Appreciate everyone's responses, thank you.

Also, we have had the same experience with the bipap. Steve usually sleeps through the night now that he uses it and also uses a condom catheter overnight. He and I are both much happier with both of those in place.

 

[affected]

oh that experience DMB is horrible, I was close to tears reading it!
Keeping him off the area is critical, pillows and/or wedges to tilt and do that are great. the sling is great too.

is there an open wound/broken skin? if not, when he is in the sling, spend several minutes massaging a good barrier cream into both the sore area and as far around the healthy area as you can. Rub slowly in circles and don't press too hard on the site. You are doing this to encourage circulation and stimulate healing.

if there is a skin break you will need a pressure wound dressing over it and the massage is only done on the healthy skin surrounding it.

Do not let him lay in one position for more than an hour during the day and at night if you can keep him off it, you will still need to reposition him ever few hours at the least.

lots of fluids - keep him really hydrated, this will make a lot of difference.

horrible things, and they sap the last bits of energy from you with worry!

 

[lgelb]

For those entering hospice, all that switching respiratory DMEs does is give you a resource for machine swaps. The odds that your machine will fail if you change filters (available on line) on schedule and use distilled water is pretty low. So I wouldn't spend a lot of time stressing over that. I'm always here if you need settings or mask help.

It is unlikely that a hospice will start you on BiPAP or a power chair or any equipment because they get paid a low monthly hospice rate, that is per person, that does not change just because they do more.

If you have a choice, I always recommend the ResMed Astral over the Respironics Trilogy, not only because of the recalls but because they are better machines.

A hospice can't keep someone from being on BiPAP. What they are saying is, they won't support it, for the reason above. But if they really go as far as to say they will take it away (depends on where you are in lease, contracts, etc.), I wouldn't sign on with them under any circumstances because clearly they don't get how palliative it is in ALS and therefore probably don't know other important things about ALS.

 

[Tomswife]

Good to know. There is a lcsw that will guide us through the transition. I will make sure we understand bipap and get questions answered. If it becomes a concern, we wont use hospice. We want it for more care, not less. We may need cough assist later also. And. We can rescind hospice if it does not meet our needs.
I will need to continue the paid aides. Hospice won't save any money. And that wasnt why we are interested.
Interesting points....they wont start a therapy because it is not worth it for them.
Everything is so complicated!

 

[Mary2]

I was noticing on a Medicare read out today that we are still renting our cough assist and two trilogies. You would think by now we would own them. I will call the respiratory company and ask about this.

We have a respiratory therapist that comes by every 6 weeks and checks the machine. He can see it from his office as well. I have his cell phone number and there are RT's on call after hours as well. So it has been a good company.

 

[Tomswife]

I think the rentals are for 13 months. Then you own.

 

[Mary2]

I think so too and it has been 22 months. Wonder what is going on?

 

[Tomswife]

They may have forgot about you. You should call.

 

[lisa g]

We were told my RT that the Trilogy will never be owned it will always be a rental through Medicare unlike when I was on a cpap that I owned after 12 months.

 

[Mary2]

PALs is becoming more difficult to understand. He has to repeat more and more. We both know how blessed we are that he has been understandable up until now. We wonder why the Neudexta couldn't have been started 6 months ago. Also I think he is going to need an anti-depressant. I have emailed Synapticure to ask if there is anything they are willing to have him take. I am going to add 4 hours of help on the week ends so I will be less tired. It was rather a teary Valentine's Day...though I did paint him a Valentine.

 

[affected]

So sorry Mary - something like Valentines day just makes it hit home more too doesn't it?

One thing with neudexta is that it seems to really help for a while then may stop helping, so as usual with this rotten disease there are no guarantees how different anything would be. Try not to let that one nag at you in the background.

I think a little weekend help could make a lot of difference for you, it's a good call.

I hope you can find an antidepressant that suits his needs and helps out. Goodness knows both PALS and CALS need all the help available. hugs

 

[Tomswife]

Mary. I often feel like we are playing twenty questions. Are you in pain? About your body? Move? Urinal? Bedpan? Tv?
He has a scribble board but it is difficult to read what he writes.

 

[affected]

I used communication charts - it's tough when there is no longer conversation.
My Chris used to say he could talk underwater with a mouthful of rocks.
Ironically uncanny how that is what his speech quickly started to sound like early in as he was bulbar onset.

We used to miss sleep so often just sitting around with him talking non-stop and us both laughing.

Then laughing would cause him to aspirate and have laryngospasms.

Soon communication was purely needs based.
Twenty questions, yep that's not a very fun game.

 

[Tomswife]

Ha. Tom told me his butt hurts...he wrote it on the board. Just one word. Butt.
I told him laughing that he is a pain in the butt. That made him laugh. I love to see him laugh.

 

[Mary2]

Caregiving: Spending 5 minutes adjusting the bi-pap mask so the head gear is comfortable, there is plenty of air and no leaks. Feeling proud that I accomplished this. And then PALs asks to use the cough assist!