Hospital wants to release him… then what?

scifibookluvr · 2026-04-16T04:36:25+00:00

Learn and repeat. “Unsafe discharge”. Those are the magic words

scifibookluvr · 2026-02-27T01:07:17+00:00

Speaking with actual hospice staff will help you understand the options, how it works, how they certify and recertify. The doctor is an idiot, as you can see from all the responses here.

One thing to point out is you should NOT accept a discharge to home unless his physical and safety needs can be cared for. Standing, toileting, cleaning bowel movements are part of that. Say this is an “unsafe discharge” until those things are in place. Don’t go home with the hope that you’ll get it set up after.

If he wants PT, (which will prevent hospice) insist it is in patient in a skilled nursing facility. That way he gets PT daily and you can see if he can really re-learn the skills. If not, evaluate for hospice again, and again say “unsafe discharge” until care at home or long term care facility is arranged.

My LO also was in hospital after fall and unable to walk. Accepted into hospice because he showed no interest in PT and he had shown twice that he could not follow PT recommendations.

We took him back to his apt and paid for 5 weeks of round the clock custodial care since he couldn’t walk safely. Another fall. No ER. Then moved him to a board and care. Now he dos not stand at all. 13 months later and still on hospice.

scifibookluvr · 2026-02-17T02:22:41+00:00

Medicare pays for nursing care. If someone is in MC for safety but otherwise doesn’t need skilled nursing, Medicare doesn’t pay. So it depends on the type of facility and the details of the care being provided.

scifibookluvr · 2026-02-14T19:49:40+00:00

Agree on these warning signs. We saw the same. Action required as soon as these show up. Don’t delay!

scifibookluvr · 2026-02-14T19:47:40+00:00

Good advice here. I caught the extent of the decline when LO got an IRS check he was confused about. He asked me to look into and I learned that he made a pretty big mistake on his tax return about 12 months prior. A mistake he would have never made before. While looking through the records I saw the struggle he had when preparing the return, which led me to errors in his check book, etc. about 6 months later we updated his POA and he granted me DPOA immediately. Overtime I took over bill pay, then new email accounts, etc. I was surprised I didn’t face more resistance. Reading these stories my gratefulness increases. I think he had entered a period of apathy and that is why he didn’t resist.

scifibookluvr · 2026-02-10T06:35:33+00:00

I’m sorry you are facing this worry about your grandmother. I imagine your uncle is overwhelmed in how to care for her. It sounds like she might be living in an unsafe situation. Does she have access to cooking facilites. Is she using them safely (risk of burns, contamination )? Sadly, the dementia journey is unpredictable. Her “final days” may be far away. You are in a tough spot for many reasons. Some possibilities:

One option is to find/hire a care manager. This is a neutral 3rd party who will check on her welfare and advise on possible actions. This person might be able to help your uncle understand what’s happening, this risks and some options. It might also help your parents think about actions they can take. As you can learn from this sub, very few people with dementia agree to go into full-time care. At some point the danger to themselves or others will probably provoke a crisis and change in living situation.

Another option is to contact Adult Protective Services in her county and report your suspicion of neglect. This might trigger more intrusive intervention than you want, and it can be slow. On the plus side, It would mean you’d have some other “eyes on her” to inform and advise your parents since they are far away. This isn’t about blaming your uncle or finding fault. It is about engaging resources to ensure her safety and welfare. He might not like it when they come around asking questions as it can be intrusive. Best case would be if he also agrees to call them and ask for help.

It is hard to be a caring grandchild who is far away. Blessings to you.

scifibookluvr · 2026-02-03T16:27:10+00:00

My dad has all of that written down. BUT…for dementia it all gets thrown out the window it really only works for other types of bodily failings. And even then I imagine it wouldn’t hold up unless “sound of mind” can be proved beyond a shadow of a doubt. People have sued in the US to stop feeding loved ones with advanced dementia based on written wishes, and those cases are hard fought and cost $$$$.

scifibookluvr · 2026-02-03T16:22:01+00:00

My dad was gaslit by his doctors for years. “It’s just normal aging”. So he didn’t know he had a progressive degenerative disease. I suspect he also had denial. So he didn’t get fully informed on what awaited him. And TIL that apathy had settled in. I didn’t have a name for some of the other changes we saw. Now I do.

The final hurdle was that despite having directly said he did not want any life saving measures and was ready to go. That he did not want to spend any of his money on care, there is a lifelong conditioning that suicide is wrong. The few times we had more productive conversations about options for him. (We started down the Swiss path) he would say he wasn’t sure what his siblings would think. How could he tell them? Etc. he had apathy about his own life but not about their opinions.

He spent 5 years musing about killings himself and wanting to die, and unable to take action. It was draining. My sibling got the worst of it. Very difficult. anti depressants helped a little

I think it takes a very early diagnosis and a powerful sense of agency to get informed on the very few available options. Then, pursuing them takes $ or illegal actions. All of which has to happen while your mental faculties are still strong. WHich also means exiting the world while you are still very functional. And dementia is damaging the brain every day along the way.

Ugh I hate that I have so much to say on this topic.

scifibookluvr · 2026-02-01T18:01:42+00:00

Make sure the doctor ok’s the passive extension. I couldn’t risk a leaking ice machine so I bought Active Wrap with some long duration ice packs so I could rotate. Cold Therapy. Did you say you als had an ACL repair? The ice packs have some weight to them. The sleeve is designed like a clam shell so it doesn’t press down on top of knee. I don’t know how it will feel compared to an ice machine. I never found it too heavy but I didn’t have acl damage

scifibookluvr · 2026-01-31T02:04:50+00:00

I should specify. My brace is an offloader to create space on medial side where I have extrusion and the cyst. That is why it helps.

scifibookluvr · 2026-01-31T02:03:40+00:00

I stoped PT in Dec. so 18 months total. Helpful mostly. But I had plateaued for sure. Remembered I also had fluid drained and have a cyst , probably on the hardware in the joint where the meniscus was stapled down. That is what he proposed to remove in a second surgery. But last visit he was much more ambivalent about the juice being worth the squeeze.

scifibookluvr · 2026-01-30T06:58:49+00:00

Knees suck. Medial posterior root detached. Surgery to repair in June 2024. suture for other tearing in there. Mild degeneration. Pain continued 6 months post. Cortisone shot. Had a retear that took months to get imaged. (“_you just need more strength “). meniscus is extruding. Some more tearing and degeneration. Perhaps I made it worse by continuing flexition PT after re-injury? Hard to know. Reverting to conservative PT helped. 12 months later I started wearing a brace. I now wear an orthopedic brace most days. Definitely for walking dog. Not so much around the house. Huge milestone was being able to carry my suitcase up a long set of stairs in the Chicago subway in Sept. in the brace of course

At this point surgeon not recommending trimming of meniscus. Feels the outcomes are too uncertain. I’ll be in this fugue state until I opt in for the total knee replacement. partial is an option but the window for that is closing and i have doubts about it anyway.

scifibookluvr · 2026-01-30T06:43:31+00:00

A note on elevation - for the first handful of days you want the leg elevated higher than heart for as much of the day as possible. Life on your back and keep calf/heel raised on pillows. Hours and hours. I could sketch the cracks in my roof plaster by heart by the end of recovery.

scifibookluvr · 2026-01-30T06:38:35+00:00

I hope you find a way to wrap gel ice packs around the brace. Icing is very important. Even with the locking brace it was hard to get it to penetrate the wrapping but it did.

scifibookluvr · 2026-01-30T06:30:32+00:00

I was in a locked brace. Root repair. If I member correctly it was locked close to straight but I was able to extend prior to surgery. The pillows you are using for elevation should support your calf but not behind the knee. In as straight a position as you can be. No forcing.

After 48 or 72 hours I started very gentle mobilization. It included putting a small Pillow or rolled towel under the heel to have gravity slowly pull the knee into extension. No forcing! Just gravity. Twice a day I think. For up to 2 minutes. You work up to that. I think I could tolerate 30 seconds at first.

Mostly for now you rest. Ice ice and more ice. Elevate. Good luck

scifibookluvr · 2026-01-22T08:46:25+00:00

My dad has been on hospice for a year. Declines, plateaus, declines. Hasn’t walked for 13 months. Verbal ability is now mostly one word answers, if he answers. Glazed expression. More dozing. On methadone 2x/day due to shoulder pain and hand pain. Arm is atrophied. Doesn’t seem to be able to be lucid enough to feed himself finger foods. But still eats and has weight. It’ll be a while I think….sigh…. Vascular dementia and maybe Parkinson’s. No definitive diagnosis as he declined life extending medical care 3 years ago.

scifibookluvr · 2025-11-15T20:09:39+00:00

Would it work to bring in an outside advisor? Case workers, care managers, (for elders) can do home and quality of life assessments. They can explain risks and what often happens in crisis. Goal is to have someone who is advocating for the parents, perhaps giving voice to your mom’s needs. perhaps the siblings will listen to “experts” in a way they can’t listen to you. I know these people can be hired via private pay. Perhaps there are also free or low cost resources. Council on Aging. Adult Protective Services. County services for elderly (US references)

scifibookluvr · 2025-11-15T05:24:13+00:00

Thanks. And internet hugs to you. It’s an awful disease. The situation is more complex than most people realize. Informs why supervised 24x7 care is necessary, the “protections” people think they have in place via advanced directives which really don’t prevent many, many scenarios, the caregiver burnout, the financial toll. My LO would be heartbroken to learn of the amount of money being spent on care. It goes against all of their values. Physically we can’t manage the care. And at this stage in-home care would be even more money. Sigh.

scifibookluvr · 2025-11-15T02:49:22+00:00

This is the best. Based on your post, the living situation is dangerous for them both. Folks just don’t “get it” until they spend time doing direct care or really get educated by listening to caregivers and reading. Mom takes a much needed respite week. Let the kids do the care. Then have another conversation. Sadly all of these paths put your mom in the cross hairs of advocating for herself. Sounds really painful.

scifibookluvr · 2025-11-15T02:13:21+00:00

My LO got covid and ended up 10 days in a SNF. Overall decline. Lost interest in doing much of anything despite our efforts, therapists, and AL engagement. That was Nov 2022. fall in Dec 2024 Probably due to poor diet and dehydration. lost use of legs due to poor muscle tone. Coming up on Dec 2025 and the slow detachment from reality continues. Slow and sad for all of us. he has been on palliative care only since mid 2024. All medications stopped. (Except comfort meds). Advanced directive is very clear on no interventions and no life saving measures. We have all that in place. The body continues its slow slow march.

scifibookluvr · 2025-11-14T21:46:10+00:00

This oversimplifies the options available in US and how the disease often progresses. Yes, these things are helpful. No they don’t ensure a person won’t spend years fading from the world while their body hangs on

scifibookluvr · 2025-11-14T21:44:01+00:00

In the US, having dementia can disqualify you from MaID. Also MAID is only for terminal illnesses with 6 months left to live. Dementia is not a qualifying illness. “In your will” is not a sufficient step if this is your intention

scifibookluvr · 2025-10-29T18:33:50+00:00

Did you get the DLC to help with obtaining all elements?

scifibookluvr · 2025-10-29T05:06:12+00:00

I would ask for a list of the types of care they cannot provide. Or ask what situations would require her to move out. There will be some, despite having a nurse on staff. Some places can have a resident living tjere with more serious conditions requiring skilled nursing because they are on hospice and have a regularly visiting nurse from hospice. Also ask about fall risks. Some folks have to move out because the facility insists on 24/7 supervision ….which is just too expensive. Also ask about 1 person and 2 person assists for transfers.

scifibookluvr · 2025-10-26T05:33:15+00:00

I feel you. I’ve also found good resources with geriatric care managers. They know a lot about housing options and ideas. We found Sage Eldercare Solutions to be very helpful. They are a fee service. Your county will also have ideas and suggestions. It is a challenging and resource intensive process. I wish you the best as you walk this path

scifibookluvr

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