Mom insists on getting out of bed to go to the bathroom. She can’t walk and has been bedridden for years. Wise people, any advice?

OP, your mother is 100 years old, on hospice with advanced dementia and at the end of her life, showing you extreme agitation by exhibiting 'superhuman strength' trying to get out of bed, yet you are against 'drugging her' which you attach a negative connotation to. Why do you have hospice for her if not to provide comfort care? The problem is not mother it is you, wanting to use 'conversational techniques' to dissuade her from the thought loop her broken brain is stuck in right now, as if 'logic' is going to do the trick! It's not. Your mother is beyond 'tricks' now and needs medication to help her, whether you are 'against' it or not, I'm afraid, b/c the goal should be to keep HER comfortable and relaxed. You're calling in the fire department to pick the woman up when she falls, but you think this is a better solution than medicating her into a more relaxed state where she will stop falling so much? If you've flown in from overseas to help your brother care for your mother, then do something TO help this situation now! Don't stand in the way of your mother's comfort.

Hospice has a device known as a 'bolster pillow' which attaches to mom's hospital bed; it cups her in place a bit which helps keep her in bed and not able to get out as easily. Speak to your hospice nurse about it; it helped my mother stay PUT in her bed once she lied down in it.

I was not adverse at ALL to medicating mom with Ativan and then morphine as needed when hospice came on board at the end of her life. My only goal was to keep my mother relaxed, calm, and not agitated as she was with her terrible Sundowning and insisting her dead mother and siblings were 'hiding' in the building somewhere but being kept from her. Should I have tried to 'talk her down' from that delusion instead of calming her down with Ativan? She was beside herself with grief and it had to stop. Ativan was the way to achieve that goal b/c with advanced dementia at 95, talking wasn't going to get anyone anywhere. She was wayyyyyyyyy beyond logic at that point in her journey.

My words are not intended to be 'mean' or 'harsh', just to wake you up to what's really going on here. Your mother needs help which comes in the form of medication at this point, at 100 years old and falling a lot, begging for HELP now. Please give it to her.

Just a word of thanks to this forum where I have learned a lot and had to reflect deeply. My dear mom is now ‘days or hours’ from her end. Sleeping all the time on morphine, Ativan and Seroquel. It’s gone so fast! Two or three weeks ago she went from just being ‘mom’ (with dementia but very sweet) to being manic and reacting badly on Haldol. Then high as a kite but happy on Ativan and now she is motionless and barely breathing, not having had food or water for nearly 7 days now. I guess I won’t need this group anymore but I wanted to thank you all for being there when I was confused, desperate and feeling inadequate. Please be kind to one another when you respond. Posters may not be able to think clearly and give the time needed to compose a post that is clear, especially if they are crying out for help. Your experiences and learned wisdom are such a support. Happy holidays to all.

Calming meds ARE the best answer and even that may not work. She's stuck in a thought loop bc her disease is likely progressing now, so you can't reason with her. Why would you be against medication to calm her down? Begging pleading and manipulation are signs of agitation and anxiety which is unnecessary suffering on your mom's part. Ativan helped my mother when her Sundowning caused a lot of anxiety. So unless you want to sit with her 24/7 to make sure she stays put in the bed, I'd speak to the doc about meds.

You may also want to rule out something organic going on that's caused a sudden change in her behavior, like a UTI or a stroke.

Good luck.

Please do not do what a nursing home does and put a mattress or pad on the floor so your mother can fall on it trying to get out of bed. They can't use common sense anymore like raising the security rails on a bed to prevent a person falling or getting out because that's considered restraints and isn't allowed. Better to let someone break a hip, rib, ankle, etc... You can have common sense at home and use the bed rails. They even have padded rail covers so she can't hurt herself pulling on the rails or get a hand or foot stuck in them.
Believe me when I tell you, she can get seriously injured doing this matress or pad on the floor nonsense.
Ask her doctor for sleeping medication and anti-anxiety medication that she can be given as needed. If she sleeps in a hospital bed, put the rails up to the highest position they reach. This will prevent her not only falling out of bed and risking getting hurt, but will prevent her even being able to get out of the bed.
Let her complain, manipulate, plead, and insist all night until she tires herself out and goes to sleep if you don't want to give her medication. She's bedridden. What would be the harm on giving her sleeping medication at night? Or a nice, little benzo drug like ativan or xanax to chill her out a little bit. She'd feel good too. Ask her doctor.

Mary,

I wouldn’t hesitate to use Ativan or other drugs. My mom used it and it kept her calm while in hospice care.

Don’t you want your mom to be free from worry? The last thing that she needs at this stage in her life is anxiety!

They know what dosage to give her. My only concern was that my mom was comfortable and calm. That’s what I would want for myself if I were in this situation.

Please speak to her staff and ask them to explain everything to you.

Of course, if you feel like there is an adverse reaction to a particular drug, tell them. There are other drugs that can be substituted.

Don’t look at all drugs as ‘harmful.’ They are actually very helpful. We are so fortunate to have different medications available to us.

Our poor ancestors didn’t have the resources that are available today.

Please utilize whatever is necessary to make your mother comfortable and achieve a peaceful state of mind.

Rails on the bed. Also, agree with another comment here - get the bed as low to ground as you can in the even she manages to get over or around bed rails. A nice thick carpet in her room will also soften a fall. A carpet company may be able to install a thicker pad for you if yours is flatter version. Or get new carpet laid with a very thick pad.

They make a device that sounds an alarm if patient tries to get up. Nursing homes and hospitals have them, but I don't know what it's called.

Her brain simply cannot remember than she no longer walks.

Maryandy
I wanted to tell you that my DH aunt, 96, with dementia and on hospice has been bed bound awhile now. Not quiet two years. She did get up and hurt herself when no one was in her room with her. She was able to make a few steps evidently but then fell. She bruised her right ankle the first time and the next time her left ankle.
She has told me that when she wants to get up she will.
Presently she refuses to get up to get into her wheelchair for a shower or anything else. Next week, who knows.
I just wanted to mention that sometimes they surprise us and are capable of more than we had thought.
I’m sorry your mom is upset. Maybe try some therapy or stretches in bed with her to pacify her that she is working on getting up. You might find some instructions on YouTube. Let us know if you find something that helps.

She is bedridden for years, 100 years old, dementia, on hospice. What would possibly help, or anybody on this forum would have a solution.
I agree with Lealonnie, why not help her with medications?

Hm, sounds like she is getting the insomnia or night time agitation type stuff.

#1 You will definitely want to make sure on UTIs, bed sores, other infection. Apple cider vinegar will cure a UTI (1/4 or 1/3 cup hidden in something super sweet. Lower dose will help but not wipe it out). If bed sores, I can walk you through that. Any other pain that needs addressed?

#2 Routine bedtime and no late night talking, sweets, caffeine. Final TV should be something soothing. Maybe soothing music to fall asleep by. That helped my Mom.

#3 natural substances like lavendar in the form of a neck warmer, lavendar stuffed animal, pillow, or lavendar in a diffuser. Chamomile tea at bed time. There are also chamomile tablets for babies, that helped my Mom.

#5 Anything else that makes her comfortable

#6 May be weird for some people (I resisted this at first, but cannabis edibles). You need a reliable brand lke Bon Bombs. No THC. Cbd only. Dark chocolate will help sleep too. So get the dark chocolate cbd only ones. We gave my Mom just a half. At bed time and if she woke up aggravated. She rarely resisted chocolate. She was on to it at times so you have to be nonchalant "IF you'd like some chocolate." Or "I wanted one but not a whole one, if you want the other half."

Hope that helps! A lot of good tips in the other posts about safety, etc. Bless you and best of luck!

Dear wonderful and wise people, thanks for so many responses to someone like me who is super new at this... The hospice FINALLY took her off Haldol (after a horrendous 24 hours when they insisted we try one more time with yet another higher dose), and she's now on Ativan and Seroquel, and no longer raving, trying to get out of bed and truly suffering. (At least with the first doses of Ativan she was laughing in her imaginary conversations instead of being freaked out as she was with haldol...) However, she is now just sleeping 24/7. Her vitals are good (remember, she's 99...)and she's a real tough cookie so I feel she could rally again - but with so many drugs I don't think she'll even wake up again! So my question to you all is: is this the aim of the hospice drug regime - that she just sleeps from now on? Do I just expect that she will be a body in a bed at home that needs peri-changing, without any food or water, from now on? (She is not refusing food or water - she doesn't even know it's there when we try to give it to her.) Can I have ANY expectations whatsoever? I mean, she has gone from 90% lucid to 110% raving (Haldol) to sleeping with occasional tremors (now, on Ativan and Seroquel), all this in the space of five days! Your wisdom will be appreciated...