Getting out of bed

May flowers

I wrote about my FIL being restless in the wheelchair and doing 360’s in the bed. Now he has figured out how to get out of bed. He is scooting to the end of the bed and going through then12” gap between the rail and headboard. He ended up on the floor twice yesterday, not falling, but sliding off the bed. We have a bed alarm so I know when he’s getting up but both times he was off before I got to him (just in the next room). 

So, now what? Should I just take the railing off now and put a mattress on the floor next to the bed? 

I hate to think about medicating him further because he is interacting some now and nearly everything we’ve  tried (except Risperdol)  has made him more agitated or a zombie - and makes him choke on his food as he’s too out of it to eat.

Maybe a higher dose of Risperdone? I’ll ask the hospice nurse too, just wanted to see if anyone else had dealt with this and what you did.

SusanB-dil

Hi May Flowers - yikes - 

I think you have a good idea there with the mattress on the floor.  What about one of those gym-type mats? Might be easier to walk on, yet still cushion enough for a roll-off.

harshedbuzz

MF-

Sounds like the safest option is 1) lowering the bed to its lowest setting, 2) dropping the rails and 3) allowing for a soft landing. 

A real mattress would be a PITA to move when you need to access the bed, but an inflatable could be just as safe and easier to move by yourself if you had to. 

HB

May flowers

Good point, HB, I have a fairly lightweight mattress from drive, but I agree an air mattress would be better!

Or a gym mat like Susan mentioned. 

Thank you both!

Edited to add: has anyone had this experience of their LO getting stronger and more restless and agitated over time? In every other way he is declining but he is turning into Superman these days. Is this terminal agitation?

ButterflyWings

May flowers - That is amazing and scary. A LO of mine got stuck between the side of the air mattress and railing when she forgot about new post-stroke paralysis and managed to laungh herself halfway off that side of the bed. The rail caught her just below the ribs after her legs slid all the way off, or she might have fallen weirdly and broken something due to not being able to catch herself normally. 

Can hospice provide anything for this? Seems like they would not want the lawsuit risk for providing him with an unsafe equipment. (But maybe we sign off saying we won't sue, in all the paperwork signed when they are enrolled). He can't be the only/first PWD LO to ever have this issue of slipping through that space completely. We had a couple of floor mats delivered from hospice for when DH was falling. They are like the gymnastics mats thickness though, so maybe you do want the softer landing of a small mattress(?) Oh my. 

Or, I was wondering if a small rectangle of plywood might extend the base of the current mattress frame, and then you could place a chunky strip of foam cushion or something on it to fill the gap that he slipped through. I can't sketch the contraption I imagined, and I don't know if the description makes sense at all. Seems like if we had trademarks on all the things we gerry-rig to keep our LOs safe, we'd all be rich! Otherwise, I agree he should be as close to the floor as possible due to all his activity. That would keep me hyperventilating to see him on the floor!

I don't know about the terminal agitation. He sure does sound active and strong though. You all are doing such a wonderful job of keeping him safe. I hope you get some rest from this high alert you have to be on constantly.

May flowers

Thanks, BW. We did a makeshift last night by stuffing a bunch of pillows on either side of the railing. Right now, I have the drive mattress next to the bed, railing down, and the bed in the lowest position so it’s about a 1’ drop. I’m keeping watch. So far I think he is sliding out not trying to stand. If he’s trying to stand we have a whole other set of safety measures to figure out. 

I asked the nurse about terminal agitation the other day but she said that he seems too alert for that. He’s not constipated or UTI so I know it’s not that. 

I just don’t know. Maybe meds are next, but we have weigh the eating, zombie effects, or paradoxical effect with the med. The nurse was stunned that when she gave him morphine the other day, it just barely worked. She said normally that would really relax someone. Same with Haldol and Ativan - both of which made him MORE agitated. 

ButterflyWings

May flowers- DH is the same with most meds looking like he took a placebo or sugar pill at the standard dosage. Or, he has an over the top negative effect as you say. So I am really careful about introducing new meds, or higher doses, like you are. 

When they tried to sedate my DH the last time he was admitted to hospital, the Drs were shocked that he wasn't knocked out sound asleep with whatever they gave him (twice since the first dose did nothing for him) and still was barely noticeable. At one point, he sat down briefly, from his pacing. That's all. Then he was back on his feet after a short time, demanding to leave which we eventually did. It wasn't a secure unit and I couldn't even close my eyes all night since he came out of the restraints and was taking out the IV, heading to the elevator door with his hinny showing from the hospital gown. 

I have a feeling your FIL's escapades are giving me a glimpse of my future. These shenanigans would be hilarious if they were just so sad and also exhausting. You are doing a great job caregiving for your LO. Hang in there!

Wild-West

Hi May Flowers,

My mom is also a climber. I'm shocked that this feeble little woman who needs assistance getting up from the toilet and getting her legs lifted onto the bed can - with superhuman strength, and after medication that would stop an elephant - somehow manage to swing her legs over the side of the bed and get her body upright all on her own (forgetting she can't walk). Our hospice nurse said she's seen this many times, but she couldn't explain it.

May flowers

BW - thank you for your kind words! I feel like I am playing whack-a-mole - we seem to resolve one thing and another pops up. The hospice doc said we could try doubling the Risperdone which we did today. We will see. At least I know this med doesn’t make him too out of it (so far)

Yesterday, I tried the mattress on the floor next to the bed and railing down I mentioned and watched. He slid out of the bed three times to the mattress and got back in the bed twice. The third time he went all the way down to his bottom and could not get anywhere from there. Same today. He’s also stripping and peeing which means a second bed change and all sheets washed. That’s not going to work. We may have to skip the bed naps since there is no nap anyway.

His caregiver was really shocked at his behavior this morning  - he was very combative and mean this morning he had the “crazy eyes” from the minute he woke - hard to explain - but it is the look of “fight or flight”. I told her this was how he was a month or so ago, pre-Risperdol. She was also amazed at nap time how he was spinning around the bed and his strong he is. When she changes him, of course he’s a dead weight and all this time she just thought he was frail. She and I agreed today - it’s not a physical thing, it’s the dementia. He even stood and walked about 3 steps yesterday from his chair before he started giving out and I caught him.

I hope she doesn’t give up - I’ve told her we will do whatever it takes to make it doable (for her and me), and if medicating him is the answer than so be it. She has been a caregiver for a long time but she has not worked with too many in this stage, I think, because by now they are in a nursing facility.

Wild-West, I am so sorry you are dealing with this too. It is inexplicable.

Stuck in the middle

When visiting friends without guest rooms, I have slept comfortably on a Thermarest air mattress on the floor.  I used it in tents when I was younger.  It's cooler on the floor, and you can't fall out of bed!

May flowers

That is a great idea. DH and I have discussed that, but then wondered how we would get him off the floor mattress in the morning? The hoyer has legs that have to slide under something. If anyone has tried it, please let me know how you made it work. We can get the lift legs around him, but it doesn’t fit around a mattress. It takes both the caregiver and I just to pivot him from the bed to a chair, I can’t imagine getting him off the floor. 

DH can pick him up from the floor when he is home, but I worry he’s gonna throw his back out too.

Plus, I noticed today, he scooted off the floor mattress and wiggled over to a shelf and nearly pulled the whole thing on top of him (fortunately it is a plastic shelf with just diapers, but still!).

We probably would have to put my puppy pen around him. Or a tent, lol.

Edited one more time… speaking of tents why don’t they make tents that go on hospital beds like they do baby cribs?

Edited again - they DO make them, called a soma or vail bed. Oh well, seems like overkill for what we need. But I’d rather do that than restraints 

​fesk

I have no advice May flowers. Just want you to know I'm sorry this is happening, and I hope the increased med provides relief for all.

May flowers

Thank you, Fesk (hug), I’m sorry we are all going through this.

What an awful disease.