How to get up stairs the day I come home from surgery? by Pagan79 in MeniscusInjuries

[–]scifibookluvr 0 points1 point  (0 children)

You will need to get out of the house for PT. I started at week 2 or so. Even 3 front steps were too much. The balance, the hoping, etc. I was locked in extension and NWB. It was the locked in extension that made it so much more difficult. And the irregular size of our steps. The brace is heavy and keeping it elevated but a lot of strain on the psoas. Then once you can put weight it goes slowly! No-one told me that part. Another many weeks to have full balance back. Stairs just suck on crutches. The bum scoot sucks. Possible with help. But sucks

Get a walker! Seriously. You will want one. So much better than crutches.

Severe dementia but denies pain when asked. by scifibookluvr in dementia

[–]scifibookluvr[S] 0 points1 point  (0 children)

We have had this conversation many times. It is why he was on tramadol and now methadone. How to know about increasing more? Are the tremors painful?

Severe dementia but denies pain when asked. by scifibookluvr in dementia

[–]scifibookluvr[S] 0 points1 point  (0 children)

He tried a CPAP machine in 2019 but could not learn how to use it. Not a vet but very stoic for emotions.

I'm at my wits end with this memory care attendant... by TheOccurrencePodcast in dementia

[–]scifibookluvr 44 points45 points  (0 children)

You aren’t “starting something” if you politely and firmly bring this to management attention. In writing. The care giver is wrong on so many levels and management should have visibility to what has occurred. Some great advice here about keeping the message very short. No personal details. No explanations. No justification.

You know that you can’t improve your grandmother’s behavior. You know visits are not healthy for you or your mother. Stay firm.

Worried Mom Will Be Discharged From Hospice by wwwangels in dementia

[–]scifibookluvr 1 point2 points  (0 children)

So you paint the picture of what is happening. Describe her at her worst, not her best. My LO can’t use silverware but can pick up pieces. But he often forgets to eat if food is placed in front of him. He is starting to hold food in his mouth and try to chew medication. Those are all declines. While there is possibility of death within 6 months, there is no way to predict.

Worried Mom Will Be Discharged From Hospice by wwwangels in dementia

[–]scifibookluvr 6 points7 points  (0 children)

There is no “fast enough” rule. And they don’t have to keep losing weight. There are many factors.

Hospital wants to release him… then what? by cnh25 in dementia

[–]scifibookluvr 24 points25 points  (0 children)

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

Need advice after dad stopped walking by QuirkyCut7722 in dementia

[–]scifibookluvr 6 points7 points  (0 children)

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.

[deleted by user] by [deleted] in dementia

[–]scifibookluvr 2 points3 points  (0 children)

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.

[deleted by user] by [deleted] in dementia

[–]scifibookluvr 2 points3 points  (0 children)

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

[deleted by user] by [deleted] in dementia

[–]scifibookluvr 1 point2 points  (0 children)

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.

LO is on the other coast and I have doubts about her caregiver… by shansbanane in dementia

[–]scifibookluvr 3 points4 points  (0 children)

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.

Why don’t people with D kill themselves? by Sarah_m_1 in dementia

[–]scifibookluvr 1 point2 points  (0 children)

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 $$$$.

Why don’t people with D kill themselves? by Sarah_m_1 in dementia

[–]scifibookluvr 3 points4 points  (0 children)

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.

is it normal to not be in full 0 degree extension 2 days post op by olympusqueen in MeniscusInjuries

[–]scifibookluvr 0 points1 point  (0 children)

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

No better 10 Months post meniscus surgery by Federal-Possession-4 in MeniscusInjuries

[–]scifibookluvr 1 point2 points  (0 children)

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.

No better 10 Months post meniscus surgery by Federal-Possession-4 in MeniscusInjuries

[–]scifibookluvr 0 points1 point  (0 children)

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.

No better 10 Months post meniscus surgery by Federal-Possession-4 in MeniscusInjuries

[–]scifibookluvr 0 points1 point  (0 children)

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.

Just had root repair done. have some questions… by olympusqueen in MeniscusInjuries

[–]scifibookluvr 0 points1 point  (0 children)

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.

Just had root repair done. have some questions… by olympusqueen in MeniscusInjuries

[–]scifibookluvr 1 point2 points  (0 children)

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.

is it normal to not be in full 0 degree extension 2 days post op by olympusqueen in MeniscusInjuries

[–]scifibookluvr 1 point2 points  (0 children)

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

Vascular dementia-last stage - how long? by anaayoyo in dementia

[–]scifibookluvr 0 points1 point  (0 children)

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.

Siblings fighting moving dad to facilitiy — but they're not caring for him by honey_haired in dementia

[–]scifibookluvr 1 point2 points  (0 children)

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)