I spoke too soon - he's graduating (no more hospice)

ButterflyWings

Oh well. This is just another one of those things. Seems they were waiting for his formal internal review to discuss and make a final decision with new team members.  And he is going to be discharged next week. 

I think it was bound to happen now or in 60 days unless something major occurred with his AD, in the meantime. Asthma doesn't count and that is what's giving us the most trouble right now, even though it is due in part to his AD causing (or complicating) the chronic lung issue and med administration, etc. They don't consider that diagnosis "terminal", so it doesn't factor into his hospice status. 

OK. So, I am grateful for the help hospice provided these last 7 months. When I look back over all the things we went through, it was touch and go a few times and although there has been a lot of AD decline, it is more subtle than the falling, infection, weight loss we were dealing with at the time. I will always be happy for any rallying or "improvement" he may show temporarily. We all know this disease goes only one way though. The support we received was incredibly helpful. In multiple ways, all of which PWDs and CGs need and deserve. 

And, it's true he is so much better off than many PWDs, and not actively dying right now. That's a great thing. Still, it is a drag that his AD progression is causing over-eating and fooling his brain into retaining weight essentially. That's just a no-no for hospice and of course "leptin resistance" is not recognized in the Medicare or other hospice criteria for decline. So, as we say often here on these boards: it is what it is.

I am grateful DH is upright (most of the time); walking, talking (wacky but verbal), and still managing to get his BM's in the toilet. Now, if we could just get his respiratory distress under control life would be "good" -- considering he is Stage 6d and sort of holding for now.

Just wanted to let you know about our revised ending for the hospice recert saga. Will keep you posted.  https://www.alzconnected.org/discussion.aspx?g=posts&t=2147561124

M1

Oh geez bw. I admire your attitude.....

May flowers

Wow, I hate to hear that, BW. I’m glad you got the support you did. I agree with M1, you have a great attitude. Hugs.

toolbeltexpert

Bw I appreciate your upbeat report, although it's not the out come we were thinking would happen. Prayers for all the caregiver warriors  and their LO's

mommyandme (m&m)

Oh boy!  I wish you still had their support.  You’re doing a wonderful job! Thanks for sharing always!

Wild-West

Oh, dang, BW! I'm so sorry. I live in fear of the same thing happening to us. Your attitude and strength is such an inspiration to me. I need to channel my inner BW.

ButterflyWings

Wild-west - I hope DH and I will be the only ones in this graduating class! I reread my post and noted the weight gain is his biggest disqualifier and I misspoke - he’s not overeating, just feels hungry all the time and his AD brain is slowing his metabolism to retain weight apparently.  Not much I can do about that. They noted another disqualifier is he still uses more than 5-6 words (Harshed Buzz’s LO remained highly verbal til the end). 

You made me chuckle at the idea of being any kind of role model right now. I fear in part its just that AD has made me a tad numb no matter what happens. Don’t know if that’s good or bad, temporary or permanent but it just is.

I can credit Lady Texan for the habit of intentionally examining every situation for the parts we can honestly be grateful for. It is a testament to the power of this forum, the lasting positive influence even of those forum mates who are in Stage 8 and no longer posting regularly. 

Anyway my first action is to buy a bedside commode to replace the hospice one we’ve been using in the bathroom (bucket removed). DH can’t get up from the toilet without it (the frame and armrests) and it took us 20+ minutes and some counting to ten (*under my breath, repeatedly) today to find another workaround since my smart self started putting their equipment aside for pickup. (!) 

Thanks for the encouragement everyone. Hang in there. 

Olly_Bake

Sorry to hear things did not work out as desired. Good news to know your DH is doing well but bad news with the hospice change. One thing about the hospice in our area is they don't play. Once you are off the program, they usually are out to get the equipment kind of fast actually.

Joydean

Sorry Bw. But glad you did get their help for a while. Will you be getting a caregiver coming in for some help? 

Take care! Lady Texan is a great inspiration and so are so many others on this board that includes you Butterfly Wings! 

Battlebuddy

   I’m sorry that you graduated. You did say you would be ok if it happens. 

  I think it won’t be too long till you are back on. I’ve heard many cases where people went back and forth a few times in the journey with Hospice. My nurses mom went off Hospice twice. 

    I was feeling a little down this morning. I said to my self I need to be like Lady Texan and start counting my blessings and be grateful for what I have - not what I don’t have. It really did help to change my attitude . Lady Texan was the bomb. Miss her posts. 

    Hang in there Butterfly Wings! 

LicketyGlitz

It's the nature of this disease that I find myself wanting to type, "I'm so sorry." Gawd, this disease sucks.

I hope you and your husband have special moments that make it all worth it, and how about this as a better sentiment, I am sorry that both of you have to go through this.

I'm always glad to read your posts/updates. Take care, Butterfly.

ButterflyWings

You all are the best. Wish us luck! I will do the same for everyone here (sending hope, humor, prayers, and well-wishes to this great group of caregivers every day). Thanks for your encouragement and you know I will keep you posted.

Joydean

BW, so wishing you both the best of luck and more importantly prayers! Take care. 

Stori

I am so sorry they won't help with asthma. Especially during a respiratory pandemic. 

Sending you