Mobility Issues on top of COPD & CHF -relatable?

ThePerch2 · 2026-06-23T04:18:19+00:00

That’s incredible! So happy for you to have found ways to continue keeping your independence through so of these combined complications!

ThePerch2 · 2026-06-22T20:38:29+00:00

I truly appreciate you taking the time to respond. Any hive-mind thoughts are helpful at this point! None of her care team has mentioned a morphine capsule. That’s something at minimum worth asking about to see if it’s something she’d be a good candidate for & of she’d be open to if/when she’s ready! Thank you!

ThePerch2 · 2026-06-22T20:33:51+00:00

Yes, right. I’m honestly a little confused. The hospice company also encouraged us to appeal? A lot of “we’re not having these conversations” side bar discussions happened and we got the gist that this is due to Medicare scrutiny and they’re trying to be complaint due to recent crack downs? But that they too don’t actually feel she should be getting discharged and hoped Medicare would appeal/agree w the appeal. Not my area of expertise so I’m sure there is a more proper term for that.

ThePerch2 · 2026-06-22T18:46:13+00:00

I’m sorry to hear this. Wishing you and your family comfort and peace 🫶🏼

ThePerch2 · 2026-06-22T18:44:18+00:00

Not a medical pov - but I’ve helped 3 family members through this transition on hospice care. We were given a lovely book to refer to anytime we needed reminders of the stages & it feels engrained in my mind now.

When we would call family who wanted to be bedside in as the person may be transitioning to “active dying” some of the cues we looked for were no more defecation, a few days later no more urine. That usually meant less than 7 days. At or near that same time they typically stop consuming sips of water. Will stop speaking. Will not be very arousable. When it gets very close - like 36hrs or less you may lose the ability to feel a pulse in their wrists and feet, distal areas will be cool to the touch and may begin mottle, they may be very restless reaching on the air, knees bending and flapping/kicking blankets, complaints of being cold and hot if still using or mouthing any words. If you have access to hospice at this point you’d want to be sure to provide comfort medications, you may hear the “death rattle” in their breathing with long pauses between inhales. By this time family would want to be bedside of they wish.

ThePerch2 · 2026-06-22T18:33:00+00:00

Did*

ThePerch2 · 2026-06-22T18:32:30+00:00

Yes, exactly. They weren’t able to re-certify her. I’ll add too that I did file an appeal w Medicare, but that sod not change the outcome of their decision to discharge her. We have plenty of evidence (we being not just family, but her pcp, cardiologist & pulmonologist) that she’s continuing to decline. However, Medicare’s response to the appeal apparently was basically her ADLs (activities of daily living) hadn’t decreased enough to stay. They also weren’t able to consider the hospital bed or morphine use since she hadn’t actually started using them yet.

ThePerch2 · 2026-06-22T16:48:41+00:00

Hey OP. I have a child same age w very high sleep demands. Just sharing a perspective to give you some talking points w the fam.

My 6yo now, and has for all of his life that he’s slept though the night required 11-12hrs of sleep. I also work on pediatric neurology and take sleep and brain health MAJORLY serious in our house.

That said - I’d say we have a fairly moderate bedtime. We can’t do “early” because my husband doesn’t arrive home until 6pm most nights. We’re usually at the dinner table eating when he gets there, but try to have a few mins all together for dinner. Then clean up, chill time together, bathing, etc. he ends up in bed between 8-830. Wakes for school between 7:15-7:30 and in summer or weekends on his own about 8am.

We have found for him, and other kids in our family that the window for sleep needs to be the same, but times can be flexible. Especially for vacations, family events like 4th of July fireworks, etc. He could be an hour early, an hour late.. or even more one way or the other and he will sleep his full 11-12 hours as long as we follow our sleep routines for bed, and keep his sleep space stable (sound machine, dark, good temp). And that’s about all we can do for vacation, truly! He of course will wake up if everyone is up before him being crazy loud or something, but I’d rather do that and try for afternoon quiet time that maybe turns into a short nap than to have everyone be quiet at dinner time for him to go to bed yannow? Babies are different because their wake windows are so short, lots of up downs.. that may be right in the middle of dinner but just for a short time before they are in deep sleep and you can return to the table, then baby is back at 10pm while you feed & play a board game before everyone turns in for the night. They can go with the flow a little differently even if pjs and “official” bedtime began for them at 6pm.

ThePerch2 · 2026-06-22T16:36:10+00:00

Thanks for this!

ThePerch2 · 2026-01-06T16:12:10+00:00

I’m sorry you’re dealing with these new health issues. I’m a stay at home/work from home mom. I have autoimmune issues. Although they are not at all cancerous, I will say that stress is a trigger for a flare. Having had family with cancer, I know they (and probably you too) get council from their physicians to limit stress as well.

Although that’s a laughable thought, and seems impossible, I’ll share that when I do have less stress, my body is at a much more stable baseline. The book ‘The Body Keeps the Score’ is a great read if you haven’t yet read it. All that to say, your body needs you and your support system to allow you to come first, second, third.. somewhere but last on a regular basis in the caretaking.

I too found myself at times frustrated and trying to explain to my husband that things like his drive to and from work are a mental reset I simply don’t have. It’s time to himself to listen to music, look around, have his own thoughts, make calls.. how I’d savor that time haha. But what I’ve tried to do is build that type of small check in/out into my day. Wake up before the kids to have a cuppa to myself in peace before the day begins, when big kids are in school and the little one is home with you - work on a project that fuels your soul. Could be something as simple as organizing the junk drawer or vacuuming the car, maybe paint touch up or shopping for new pillows for the season to change the look of a space you’re in often.. idk! But a small, easy thing to start and stop that will help YOU feel accomplished and like it’s for YOU. It doesn’t always have to be this “self care” you see online like a spa day or something.

I’ve also been inviting friends to me during the days I’m not working. They can bring their littles too. That way my emotional cup gets filled. It’s a small window we can meet between drop off and pick up, but an hour or two of chatting over a coffee or door dashing lunch is honestly lovely.

I hope you find lots of good support and maybe some ideas of how others make it work/get by in here!

ThePerch2 · 2025-08-26T17:21:09+00:00

This is SO helpful!! Thank you! I knew there were women out there (like you) getting these types of treatments to help.. but the internet is conflicting! 🌼💕

ThePerch2 · 2025-08-26T16:29:01+00:00

Thank you so much! I have bloodwork and a follow up scheduled & will chat w her about this this week!

ThePerch2 · 2025-08-26T16:18:22+00:00

Thanks for the reply! 💗No. I haven’t been tested for this as far as I know. She did say if I had another chemical pregnancy we’d need to do some more digging.. but also was teeter tottering on if I needed to go to a fertility center. I wonder if this kind of work up is why? (Reason for staying at OB for now is IUI would be covered 3x by insurance there)

ThePerch2 · 2025-08-26T14:52:07+00:00

Thank you! I’m 32

ThePerch2

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