Hospice recert decision - good news

ButterflyWings

Forum mates - following up to share the decision:  

DH is continuing on hospice. Will be reviewed again in 60 days as always. I was prepared for either decision to be "good news" as my earlier post noted.  

https://www.alzconnected.org/discussion.aspx?tid=2147561119&g=posts&t=2147561109

There are pluses and minuses to everything and I've decided to have an attitude of gratitude as much as possible, for the rest of my time on the planet. But I am relieved not to be undoing the current program we are on, and especially because he clearly is struggling in some ways right now, both cognitively and physically.

  

I'm told it was close because the weight thing is a big factor for hospice evals and recerts. We will be failing that metric for some time to come, I am sure. He can't help how his brain is working against him in that regard, with the leptin resistance thing. Who knew? Just can't win with dementia.

But this is a help at least. Wishing everyone else good news in their future recerts as well. If DH could truly improve, even short term, I'd be thrilled to say goodbye to end of life care. But that's not going to happen. So I'm glad for the supportive comfort care team and tools at least.

May flowers

Good news, ButterflyWings, I know that must be a weight off your mind!

ButterflyWings

Thanks May flowers and HaHaHa - I see what you did there

Olly_Bake

Wonderful news indeed ButterflyWings!

​fesk

Glad to hear that Butterfly Wings. 

And attitude of gratitude is a good way to put it and is something I am working on.

M1

I'm glad BW....here's hoping the same for the other guys too

Battlebuddy

  I am happy for you Butterfly Wings! 

Glad you will be supported with the nurse and supplies. 

I found the info about Leptin resistance very interesting. My husband never refuses food or signals in any way he is full. I just feed him what I eat in the same quantities. I think it’s probably a little too much for a guy lying in bed. 

   Well we were recertified too today. I think the seizure and swallowing problems ( which have gotten progressively worse) tipped the scales. I’m happy that our routine will not be disrupted , and no changing of beds will have to be thought out. 

ButterflyWings

Thanks everyone - and SO happy for you and your husband, Battlebuddy! 

That is great news. Sure did not want to see him having to play musical beds. I hope his swallowing issues subside a bit, and soon. That is scary. Do the thickeners help? You will have to find another way to get a stay-cation/vacay somehow too. Hospice really is hectic although the benefits to our LOs definitely make it worthwhile. 

Joydean

Butterfly wings that is great news! Very happy for you and your dh.

Battle buddy great news for you both also!  This is a good thing for both of you. 

Battlebuddy

   Butterfly Wings, 

    Since you asked, 

  The swallowing issues happen when his brain forgets how to swallow. It just happens. It can be mid sip, or not related to eating or drinking. It’s so total that he can’t remember how to swallow his own spit. 

   There is nothing to do ( I’ve tried everything) but wait till his brain remembers. It can be hours. We are working around it but there will come a point when he just forgets permanently and that will take him I guess . 

ButterflyWings

Gracious Battlebuddy, that's tough. 

We haven't had swallowing issues (yet) but some impromptu choking, periodic aspiration, and also forgetting how to inhale his asthma meds. That's fun. And dangerous. Here we are in respiratory distress, and he uses the little bit of air he can muster to blow OUT, instead of sucking IN so the meds can act quickly and give him some relief. Just so hard to keep smiling, speaking softly and patiently without panicking, to help instruct a dear one who doesn't know what in the hell I'm asking him to do, nor how to do it, nor maybe even why...at just the time that he also surely is feeling about ready to just be left alone. Sigh. That was our 3 a.m. activity today. But at least the oxygen is here as well as the meds he needs, delivered to our door and without copays thanks to hospice. Finding the good amid all the hard stuff.

Bless you for being such a wonderful spouse and caregiver. With the tough road our LOs are on, it is truly important to have a strong partner (and village) to help provide safe passage. Heartbreaking for us, but on the toughest days when I am feeling frustrated, sad, overwhelmed or just down in the mouth about all this really heavy lifting we caregivers must shoulder, I try to remember it could be even worse...they drew the short end of the straw. The least I can do is try to make sure DH is as comfortable as possible and treated with the dignity he (and all humans) deserve as this thing runs its course. I hope and pray something else intervenes before 7f or whatever. 

Hang in there.

zauberflote

Butterfly, re the asthma meds, can you get them rx as a nebulizer? My MIL didn't use any meds for her COPD until it was way too late to learn how to use an inhaler. Two of the meds in her nebulizer cocktail were two I take (as inhalers) as maintenance for my asthma. And perhaps long ago you took a croupy baby to the pediatrician and they stuck you with 30 minutes of albuterol baby-nebulizer. All they have to do is breathe. And for MIL, hospice paid for the machine and meds because her COPD was what she was on for.

ButterflyWings

Hey Zauberflote, yes the nebulizer is better but he’s still confused about the different techniques for each device. He’s getting about half that mist most times. Either he tries to blow into it or thinks it is smoke and I need to get it out of his face. Clenching teeth or putting his tongue in the way of the little spout, or just deciding “that’s enough” before the breathing treatment is done. 

We had the machine already but hadn’t needed it since before covid! He had started using a 1x daily disc with dual meds and life was great, breathing wise. That and the 1x daily Singular (Montelukast) pill was all he needed. (BTW, I learned on these boards that Singular may have some benefits re cognitive impairment and I do believe it may have helped mask his MCI and early stage AD for a while. Good and bad in that lol)

Anyway, we had a honeymoon couple of years asthma-wise with no exacerbation except when triggered by a UTI. Funny, covid masking and isolating helped a lot. The past several weeks though, you’re right, the nebulizer is our best option but it’s not yet enough. Unfortunately, the disc he’d been using 1x daily which worked miracles, is totally confusing to him now. It loads a dose of powder form that he has blown out into the room every time this week Brilliant invention and a no-brainer to use...unless your brain is broken. Confusing. As are the traditional albuterol inhalers, even (or especially) with the extender thing that helps with the timing coordination needed to get those lifesaving meds into the lungs vs the tongue or roof of the mouth. 

It’s things like this that remind me every day how many separate but automatic brain decisions and physical actions we make constantly just to stay alive. And PWDs control towers are offline which is one big train wreck. Over and over. 

Quilting brings calm

Butterfly Wings -  the nebulizer, disc,  and inhaler issue you mentioned is something I needed to be aware of and wasn’t.  So thank you for mentioning it. My step-dad has COPD and allergies,  a big oxygen machine for at night, an Imogen portable machine, a nebulizer, two inhalers, and probably more.  I just don’t know exactly what all the medications he has are for which issue.     I leave that between the doctors, pharmacy, and nurse at the assisted living center. He takes the generic Singular too.   Right  now he’s capable of using everything as long as the nurse and pharmacy get it all there.  

Can you give me some idea of what stage using the inhalers and disc become problematic?  Or did the isolation due to the pandemic give you such a reprieve that you aren’t really sure if he could have used it a year or two ago? 

ButterflyWings

Hi QBC - I just started a new thread to reply and continue discussing this in case others have input.

Quilting brings calm

BW - thank you for the new thread!