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?

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.

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.

My mom was bedridden when she was in a hospice care home. She was given Ativan and Seroquel.

She also had a urinary catheter.

I think there is something called PureWick for home use. Maybe some of the posters on the forum are familiar with this product.

Best wishes to you and your mom as you go through this challenging time.

Can I ask a personal question? Is Mom incontinent? Or does she have urge sensation?

If she is bedbound & double incontinent - makes sense to stay in bed & change pads.

But if she knows when she has to use the toilet & has control - it's a reasonable thing to insist on, yes?

maryandy,

That's a very tough one and I'm sure you're at your wits end. It appears that she lives with you and that makes it all the more difficult.

She probably has some degree of IC - Interstitial Cystitis - which is a leaky inner bladder wall that allows all manner of compounds to get through the tissue and reach pain receptors that cause endless pain signals and are always firing which the brain reads as urgency, full stop gotta go now type urgency.

You don't want to drug her, can't reason with the broken brain and you have to prevent her falling. What they do in some MC units is to place the mattress on or very near the floor and then pad all around so that when she climbs over the rails or otherwise manages to get out of bed, she doesn't have far to fall and can't injure herself. It's drastic, but it's a good safety measure.

Of course, you've explored all the bed alarm options and wonder if you can live with constant alarms. There are so very few viable options.

If possible, have an OT come in under MC or Medicaid with a MD order and see what tools they have to offer.

Wishing you the best and some full nights of sleep.

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.

Sounds like there’s some anxiety issue. A low dose of an anti-anxiety med could help a lot.

My late husband who had vascular dementia, and was bedridden after almost dying from aspiration pneumonia, would often beg me to get his hemi-walker down from the attic so that he could walk again. He insisted that he could walk, and I know in his mind he believed that he could. But of course I knew otherwise, as I was there every morning when his aide would lift him out of bed to put him on the bedside commode and see just how he no longer was even able to stand for long to try and help her. I would tell him that if and when he got stronger I would think about getting his hemi-walker down, knowing full well that that day would never come.
My husband also had a supra pubic catheter, so that made my life a whole lot easier, so he only had to use the bedside commode when he had to poop, which thankfully he was 99% of the time a morning pooper.
I'm not a fan of medicating someone unless absolutely necessary, so I would perhaps try some kind of catheter for her first and a bedside commode(right next to her bed)where you can have someone lift her on and off of it as needed.
Best wishes.

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.

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.

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?

My tiny mommy really dislikes using any kinds of medecines. She's either dealing with delirium from end stage COPD, or the very beginnings of dementia (sundowning) -- which could be identical things anyway. I've been watching the mental stuff and it sucks and its terrible because she can remember back days and days and things that happened but then there's a part of her mind that's turning into quicksand, or a whirlpool, or something.

She's very aware of these process happening. Like. REALLY aware of it. And it is super annoying/scary to her. She has to place a lot of trust into me to do the right things by her when she's caught up like that. and that's what it feels like, being caught up in a wave that's pushing you where it wants you to go. There's people and copies of people that flow in and flow out. The room becomes a new place and another new place and another new place. Doors are moving around. It's a lot going on for a woman who is stuck in a chair. ?

The thing that has given her peace is seroquel. Now, her one dr wanted us to just use the haldol in the kit. But SHE didn't want it. As in, my mom didn't want it. She is okay with seroquel though. The hospice nurse started her on a literal 1/4 dose because my mom has been so super sensitive to all of the meds in the kit. Which is me snapping up an already tiny pill on a pill cutter and she gets 12.5mg a day. Which so far has been enough to keep her in the real reality, unless she has a panic attack or gets super scared/agitated by something.

Which then I should give her one of two DROPS of ativan from the comfort kit which is like.. what. .1 or .2mg basically. And she is okay with that because "it is a very small dose and I am very sensitive to meds". And she is, and I believe her.

the script dose on the box is .25ml / .5mg per dose every whatever hours as needed for agitation. But you dont have to give that much unless someone is physically wrestling you. The "as needed" isn't just.. the whole .25ml until they're unconscious, though I guess you COULD do that.

The looping thoughts are really agitating to my mom. She's aware she's caught in the loop. She's juggling thoughts trying to keep any of them from hitting the floor but to do that it requires her to keep them all in the air, circling like juggling balls. She doesn't want to drop them because she wants to finish the thought-process, but she can't seem to catch the three balls into one hand to end the act.

You have the tools at your disposal to help her. You don't need to knock her out with meds. Just give her the smallest functional dose. Start with a drop or two or ativan and see how that helps. It might be enough to help your mom slow down the swirling in her brain enough to remember that she can't walk anymore.

But you're doing her no favors having her suffer like this. If you wouldn't withhold pain meds, please don't withold meds that can stop the agony going on in her head right now.

You've ruled out uti and pressure sores?

The next obvious step would be hoisting. Obvious to me anyway. More obvious than giving her a pill so that she stops wanting to get out of bed. Has she ever been hoisted before? How long has this been going on, by the way?

Meanwhile rather than telling her why she can't get out of bed ask her why she wants to and listen to the answers; if nothing else, the effort of answering might channel her energies away from lifting her legs over the rails, and it's not impossible that she'll tell you about something you can help her with.

If it's a profiling bed you should find raising the leg break makes it harder for her to lift her legs, too.

I did not read all the comments but one thing you can do with a hospital bed and get it as low to the floor as possible. This is what nursing homes do for those who try to get out of bed frequently. There are special beds that will go almost all the way to the floor and she will find it difficult to get up from that low a spot. Also put soft mats next to the bed in case she does fall.

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.

Get her a pure wick external catheter. Works very well. Medicare might pay for it.

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!

I saw soneone else said Purewick. Purewick is a life saver. Foley is banned in many areas because of the high infection possibility. My friend got the Purewick start up and just washed and re-used the sponges. Only buying more when they wore out (stopped wicking). Do you have an alternating air mattress? Life saver for bed sores and also comfort. Vive has an overlay for $75. Awesone.

Get bed railings (or hospital bed w/railings).
I also use a body pillow as a buffer although all depend on her mobility.

Sounds like she needs to be in a facility with 24/7 care / observation.

Nursing homes (and I presume all facilities) cannot restrain a person.
Very specific rules and regulations about this. 1/4 railings are used in nursing homes. Along with floor mats in case of falls.

* My friend (I believe) tried to get out of bed twice forgetting that he cannot stand up on his own and fell on the floor. Sometimes the only way to proceed is to break the fall with cushioning on the floor, as has been suggested. They do this in some nursing homes although the 'mat' is very thin. A person can hit their head on a table on their way to the floor so ... consider all possibilities.

Gena / Touch Matters

Has she been checked for a UTI?

Has she been checked for a UTI? Since it’s a recent change, there could be an infection going on.

I have not done this, so I don't know how realistic it is, but I have heard that you can put her mattress on the floor. It's assumed that she won't be able to stand herself up from that level which will prevent a fall.

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...

maryandy: I did see your update of four hours ago, wherein you stated that your mother is no longer on Haldol and was placed on Ativan and Seroquel, but is sleeping 24/7. May you seek peace at this most difficult of times. Prayers sent.

I can understand her attitude. Who wants someone else to take of them in that area? I had a stroke and can't do anything about bladder issues but the other is mostly ok. I don't know what I would do otherwise. My ex certainly did not help, just complained about having to clean up after me.
So what do you complain about, cleaning up after them or them trying to go on their own?

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.

Mary,

Sending hugs to you as you go through this difficult time. I am glad that your mom is comfortable receiving hospice care.

My mom was on the exact drugs as your mom, Ativan, Seroquel and morphine at the end. She died peacefully.

You have been a wonderful advocate for your mom. I’m sure that she appreciates it.

Wishing you peace as you continue to care for your mom.