Rocking and crashing into things

May flowers

I made a lighthearted comment the other day that I needed to wrap my FIL’s geri-chair (and furniture) in bubble wrap, but it is really gotten worse and I’m wondering if there is an underlying issue. We did manage to get a urine catch yesterday with a condom catheter so waiting on the results of that.

Anyway, if the wheels are locked, he rocks back and forth violently, non stop. If we recline the chair with  his feet up, he still gets them off the side (it is not as bad), but the. He starts slamming his hand on the tray. If we take off the tray, he slams his hands on the side of the chair. If he doesn’t have a seatbelt fastened, he scoots until he is sitting on the footrest and does the same thing. If we undo the breaks, he rolls around and if he backs into a piece of furniture or wall he slams it hard, repeatedly, until we move him. If you mention to him he is going to break the furniture or wall is reply is “good” or he will tell us to just fix it, or just move it. So we obviously don’t bother trying to reason, lol. He will even slam into things in front of him, causing bruises to his knees. It’s crazy. The whole time he has his eyes closed, but he is not asleep.

We try to redirect with fidget toys, talking, music, etc., but he wont stop. Anything we put in his hands (besides food), he just throws on the ground. It has progressively gotten worse over these past few weeks and his crashing is more violent. I have started adding pain medicine to see if that helps any. He had a tiny bit of morphine yesterday prior to them putting the condom catheter on him and he did not do the bumper chair nearly as bad - which really makes me think it’s pain.

He says he doesn’t have pain, but he has always said that, even right after surgery. So, I can’t rely on that. I wonder too if it’s the new prostate medicine  (in the past Tamulosin made him berserk, and it’s a similar kind of med). If it’s the med, it’s a real catch 22 because he needs it to be able to empty his bladder during the day.

Is this progression? Did anyone else’s LO do this? If so, how did they treat it? He did well on the Risperdol to start but I’m wondering if it could be that as well. 

M1

MF I am glad you have morphine and would not be afraid to use it.  Sounds like you really are getting to the comfort stage.   All the prostate drugs (alpha blockers) can lower blood pressure.  Rock and a hard place, for sure.

harshedbuzz

MF-

I wonder if you are in a place where you need to take extraordinary steps to prevent damage to FIL and surroundings in much the same parents of children with profound autism do if pain management isn't successful in extinguishing this behavior. 

I have know families who have created a safe place in their home for times when their child is melting down in a way that drives them to self-harm or destructive behavior. 

One strategy would be to cushion his chair with either foam and zip-ties/duct tape to prevent him being hurt pounding on it. If the edges are narrow, pool noodles can be split and re-purposed. Usually families remove most furniture and pad the walls to protect them with sheets of plywood covered in foam/fabric- I imagine 4 x 8' (landscape) panels fastened to studs would be enough to protect him and what he's crashing into. 

HB

May flowers

M1, for sure a rock and hard place. His BP already hovers in the 80-90s/50s. I have been putting him in bed and raising his feet in the afternoon when his BP is usually the highest, and checking his BP before giving him the med. Yesterday his BP was 75/45 so I did not give him the med.

Harshedbuzz, unfortunately we do not have a dedicated room for him, but I do like the idea of putting some foam on the chair. DH also came up with the idea of using door threshold rubber and making a wide circle around his chair on the floor in the middle of the room. He tried it with a smaller strip and he could not roll over it.  The caregiver doesn’t seem too bothered by it (so far anyway). But it is all day long, constantly. I do not know how he is not completely exhausted.

ButterflyWings

Such great suggestions here. And I think you might be onto something...sounds like it really could be pain related. If you have the morphine at home via hospice and can give it regularly that should let you know really soon, right? 

It is such a blessing having our forum mates who also are medical pros to help reassure about possible med solutions. It is surely worth a try. Hoping for relief for your FIL and the family. This is a tough one.

*Edit: I see the low blood pressure may be an issue for morphine (I read or misread that oral morphine is not the same in that regard, as injected or iv morphine...but probably got that wrong!) Hang in there! - 

Any word yet on the Urine Analysis? They told us within 24 hrs if there was no bacteria. If there was even a small trace though, they sent it out for the culture.

Olly_Bake

I swear the other day, May flowers, when you said that comment my thinking was you were dealing with a stomach or urinary issue. Sorry to hear things have not changed! What did you and hospice decide on the urologist? Have you seen a big improvement since the meds?

Mom did not do well with the very first dose of risperdol. She became combative and was seeing dead people. Could we reason - nope? Called the pharmacist and he said for some people it could cause hallucinations. It got so bad I got scared and called the ambulance. They came out and asked us to allow 24 hours for it to be gone completely from her system and just keep her safe. After that episode she was back to herself. Just our experience.

Don’t blame you for not wanting to administer with such BP numbers. Have you tried changing seating to see if the Geri chair is causing pain although I know the surgery was quite a while ago? Seem like you did mention a different chair in another post. Was it a recliner?

M1

MF I'm going to throw this out there, but I know it's hard to fathom:  at some point--and probably soon--you could think about just not checking his blood pressure.  It's hard to stop doing things that you've always done, but you're probably getting close to that point.  Why measure something you're not going to do anything about?  This is part of the process of letting go and focusing strictly on comfort.  Only you can make that decision, but it's worth thinking about.

May flowers

Olly, hospice was able to get a urine sample with a condom catheter so we are just waiting to see what it says. The prostrate medicine is helping him pee during the day, but this craziness could be a side effect of it because we had issues with a similar med before. He’s been on Risperdol 3 weeks, I  didn’t think it affected him badly, he was more alert and communicative, and much calmer for changing and such which was nice. But now he’s back to being combative with all of it.

Yes, he is doing the same thing (rocking and shuffling, trying to scoot them, sliding down, turning around) in other chairs, and even the bed. the main difference is the geri chair has wheels so he’s managed to weaponize it lol. Today, I put him down for a nap and watched him rotate himself 360 degrees twice. At one point he had his feet on the wall stomping the wall.

M1, I am only measuring the BP so I don’t give this prostrate med when it’s low and cause him to bottom out. Before this med, I had stopped taking it daily. The only thing I really do about it is give him electrolytes if it drops to the 70s. It does feel like I’m fighting a losing battle. I told the hospice nurse I wonder he might be in heart failure (but that is not something we would treat per his EOL wishes). I agree about focusing on comfort, but I am torn. I also still put thickener in his drinks (he still eats and drinks on his own with very little prompting) because I don’t want him to choke, so the timing the prostrate med when his BP is not low feels like the same kind of effort on my part. 

I know these things are coming, but I don’t know if I could forgive myself if I allowed a situation that hurried it along. I don’t know. The hospice nurse thinks he’s doing pretty well overall, as in not close to transitioning.

​fesk

He has been on the Risperdal now for a few weeks I think. The dose is probably building up to a steady level and reaching its full effect. Is he on the same dose or was there a recent increase? It could be it is not agreeing with him. We had to stop a different medicine with my mother as it built up and the dose was increased. She became very aggressive. 

It could also be pain or the UTI. It's so difficult to tell. I would try ruling them out one at a time. 

I am sorry this is happening.

May flowers

Butterfly, I just saw your edit - no word yet! Either hospice it too busy to tell me or the lab has  decided to move forward with the culture. I hope to hear something tomorrow

May flowers

Thanks, Fesk, that’s good advice too. I think we will see what the urine shows, and go from there. This ramped up behavior seems to coincide with the start of the prostrate medicine. Tamulosin made him hallucinate and delirious (that was when he lived with us a year ago) he turned out not to be nearly as bad as we thought once we took him off it. This could be the same. Maybe I’d look at a lower dose of that first if the doc concurs, and if that doesn’t work, then think about Risperdol.

M1

I can tell you're torn MF, I guess that's why I brought it up.  I think you've done a fabulous, loving job taking care of him, no question--if it weren't for you he wouldn't have survived this long.  I just don't want you to beat yourself up over things you can't do anything about, and give yourself--and him--permission to let go at some point.  You can't go wrong with the comfort focus as the end nears.  Sounds like your hospice folks have a good handle on that too.

May flowers

Thank you, M1, both for the kind words and advice. I wish I knew what “the end” looked like. I’ve read on it (for dementia), but so many things don’t fit. I’ve been through this with my parents and my MIL and there was a clear progression that we knew even weeks out that it was soon. My FIL is eating well (feeding himself), gaining weight, very strong, communicating some. I asked the nurse if this is terminal restlessness and she thought that he was too alert and engaged for that to be it. I just don’t know. Hospice does not say one way or another where they think he is or what any of his behavior means. 

But comfort is comfort, in any case and that for sure needs to be the focus.

jfkoc

Maybe he just does not want to be in the chair or be left on his own.  Is it moved to different locations? Can it go outside? How long is he left in it? Strapped in? Bored?

May flowers

Jfkoc, it’s not just that chair, it’s any chair and the bed. He does the same if the seatbelt is on or off. I mentioned that chair specifically because he can do more damage with it, lol. We do move him from room to room, outside to the porch, outside to the sunroom. We sit him up, recline him, lay him down for a nap, let him sit in other chairs, and DH takes him for a short walk to the bathroom every day. We do things to try to keep him from being bored.

He definitely appears uncomfortable, but it seems as if he himself is uncomfortable, no matter where he is. 

However, this morning, he had two large BMs and is much calmer and relaxed. The caregiver has only seen him in agitation mode so she is so excited to see him like this. This is closer to baseline, IMO.

So maybe it was pain and discomfort from being constipated. 

mommyandme (m&m)

Constipation can definitely anger the best of us.  Maybe he’s trying to get off his bottom in these chairs as it could have created pressure pain too. My mother sits daily, all day, and she’s been sitting on a horse shoe shaped pillow (a boppy pillow to be exact) so there’s no pressure on her coccyx and bottom.  For 1.5 years it’s helped a lot and with her back pain too. 

Our hospice nurse told me of a patient that was demented, bed bound and combative.  We started the discussion because of a skin tear issue we were dealing with. Anyway, said patient rammed both legs through the bed rail and ended up with superficial yet catastrophic skin tears on both legs from her ankles to her knees. She ended up succumbing to the injury a few days later due to her body going into shock because it was just too much for her. I wonder if she was constipated.  Yikes!

Not saying your LO is anything like that or his caregiving… just wondering if maybe that’s a definite thing I should consider. A resounding YES! .  We have no idea what’s to come next no matter what the circumstances are.  I hate this! 

May flowers

Love the idea of the pillow, thanks! I had bought something for the wheelchair, shaped you describe, I may try it in the gerichair today. I’ve seen they make the alternating air things for chairs too which might be helpful.

The bed rail thing is scary … my FIL pushes his knees through every day and he gets stuck that way. We have tried pillows, bumpers, etc, I think I need to buy those covers they sell to cover the railings.

Our caregiver used two pool noodles and cut them down lengthwise to cover the top rail and it works great to at least provide some cushion on the railing (until he takes it off)

BTW, whoever on here suggested the pool noodles to put in their hands is genius. It was so nice this morning to get hit with those instead of fists!

jfkoc

It was just a stab in the dark. It sounds like he is getting max care. Let's hope the constipation problem was the cause and is now resolved.

ButterflyWings

Whew! 

So much to think about -- constipation can cause back pain and more, right? It is a major side effect of morphine, I was told by the hospice doc who visited DH at home this week. She said they need to do a better job of informing caregivers of this, so they take Senna or some other stool softener at the same time that morphine is given. 

Hoping your FIL is more comfortable in the meantime though we know there is no cure for their primary diagnosis. As for the pool noodles, what a great hack. Can you duct tape some of them to the rails so he can't remove them?

May flowers

Jfkoc, I appreciate any and all suggestions, thank you!

ButterflyWings, good reminder about the morphine and constipation. Our routine that seems to work is to give miralax on day 3 if he hasn’t pooped, and on day 4, 2 miralax and senekot. I may think about giving him a half dose of miralax everyday so he goes everyday. 

Duct tape is a good idea!

Still waiting on the urine culture.

I asked him if he’s having a good day, and he said regitivefully (relatively?)

mommyandme (m&m)

We use Mirilax every evening at a full dose.  My mother had chronic constipation problems seems like all her life. She’s not had a problem for about a year now.  Her digestion and bowels may have changed but even with incontinence, I’m very thankful.  No more manual digging for me! Phew!

Also, May Flowers, on the alternating air pads for the hospital bed… did hospice supply a mattress like that or did you buy a topper or a mattress? Wondering if I’ll have to shop that myself…

May flowers

Hi, M&M, hospice provided the air pad for the bed. The actual mattress that’s on the bed is standard, but I think the air pad makes it pretty comfortable. It has an electric pump that automatically inflates/deflates different sections thats supposed to help prevent bed sores.

I’ve noticed with hospice, different agencies provide different things. A nurse suggested to me that I see what Medicare will cover, and if needed, insist the agency provide it. It’s just a little more paperwork on their end!

——

On a slightly different note, we did manage to rearrange our furniture as much as possible, putting soft things like sofas and chairs to block access to hard or fragile things. We also did tape some bubble wrap around metal parts of the chair (to protect the chair and the furniture). My FIL is enjoying running into things and making the bubble wrap pop (LOL!!!). I just bought some rubber edge guard they use for baby-proofing - I think it might work better.

May flowers

Update, no UTI, so it may have been constipation causing the issues, or the prostrate med, or progression. He’s been a lot less agitated the last few days.

​fesk

How are things going with the agitation, May Flowers? Hope there's been an improvement.

May flowers

Thanks for asking, Fesk! He has calmed down a lot. He is still rocking, but not as constant and still running into things but after a few tries turns a different direction instead of crashing into something over and over. He is much more alert and trying to communicate again.

So, my best guess is constipation. What I’ve learned from all this is the constipation causes odd behaviors much like a UTI does for him. Something to stay on top of.

DH came up with a clever idea. He got a big rug, and 2 heavy strips of rubber - he puts one strip in front and one in back of my FIL’s wheels spaced however far apart. The rug keeps the strips from just being pushed around. This allows my FIL ability to roll around but gives him some bumpers. My FIL doesn’t seem bothered by it and it kind of confines him to one area so he can stay around us and makes it easier to interact than when he’s over in some corner of the room getting himself stuck. He is still doing 360 spins in the bed when he’s awake.

I’ve worried that all this rocking and spinning is going to harm his skin but the hospice nurse says his skin condition is good and not fragile (for now) We have been really careful with skin care and making sure he gets a lot of protein in his diet. He gets a sponge bath (hygiene or wet areas) every morning and evening and lotion/massage of his arms, legs and back (down to his tailbone) once a day. He likes the massage, and sometimes when he is stiff and ornery in the mornings, massaging his legs helps him straighten his legs and relax. He gets 2 full sponge baths a week and Sunday night is shower night, and so far he is letting us do that. But we are very quick - I’m the washer and DH is the rinser. We use about 5 towels and we cover whatever has been washed and do the privates last. Usually my FIL tries to dry himself while we finish so it keeps him occupied. We put a heater in the bathroom so it’s like 90 degrees in there during showers - DH and I are sweating but FIL is comfortable, lol. We do all that right before bed so he can get nice and snuggled up under the blankets as soon as he’s dry.

We almost feel like we have a routine now. The caregiver and I do most morning cleaning and transfers together, I cook his breakfast, she does his laundry and then she pretty much has it from there until 2 while I do other chores/projects. I pop in and out to chat or whatever but she is adamant I don’t lift a finger during her shift, lol. Except sometimes for transfers or hand holding when he’s resistant. She is wonderful.

The only catch is it is too hot for gardening and such by the time we’ve done the morning transfer so I have been getting up at 6 to get those done before DH leaves for work. CG puts him in bed for a nap at 2, DH comes home, we have a little us time, then we get him up and DH takes over the transfers (he can walk him to thr BR). I clean after toileting. I watch FIL while DH cooks dinner, we all sit down, taking turns helping FIL eat at the table, then we hang out in the LR and watch baseball or the Waltons until 8:00 (bedtime). DH gets him in the bed, I clean him up and give him meds, we have our silly time (he is kind of giggly/chatty at night) we say goodnight and he falls asleep quickly most of the time. 

Weekends, DH takes over morning with FIL and I clean stalls, coop, and do heavier work in the garden. Then we swap out and DH works on his projects. 

It’s a good routine and sustainable so far. 

Phew, that was a long answer, but so far so good. 

Edited to add: the reason I think this routine is sustainable is that there are always 2 people, even when there is one, there is someone nearby to help in a bind. I really felt overwhelmed when it was just me most of the day. 

ButterflyWings

May flowers - what a great routine! Hard work all around, but you are getting it done. You and your DH seem like such a great combination and having home help now that is a good fit...priceless. So glad your FIL seems to have more comfort and less agitation without the constipation. It makes sense what you've observed, that it is almost like a UTI for him in terms of the behaviors and probably likely physical misery it is causing him. 

Man oh man, dementias cause such a matrix of things to troubleshoot and address. And then something new pops up. Trial and error. You are winning in the keep him comfortable and everyone else sane, lane right now. Congrats! It gives me hope that with a 2nd person (HHA search resumes next week), we might be OK too even though hospice will not be checking in on DH any more for a while anyway. Thanks so much for the update. 

May flowers

BW, the second person has made such a difference. I hope you will be able to find a good HHA partner to come alongside you too. I really feel for everyone trying to do all this alone. What will you end up doing regarding medications now without hospice?

​fesk

I'm so glad the agitation has improved and the caregiver is working out. A good caregiver can make all the difference as you are seeing. 

Sounds like you have a great routine in place too. I'm a firm believer in routines - as long as they allow it. It's still a lot of work, but having a system helps.

It's nice to see good news - so happy for you. 

ButterflyWings

May flowers - Thanks for thinking of us. Yes I hope the HHA roulette brings us a win soon. So far, there have been more no-shows than anything. And a couple of false starts with folks I assumed would be fine. One was never planning on staying at the daytime schedule (I learned later) and had other issues. The other was not vaxxed (can't do that with a compromised immune system esp since DH already is struggling with the respiratory issues we can't seem to get a hold of yet). 

Meds: 

I had been working on a parallel path all along to get his VA health care services in place, so VA already had begun providing the asthma meds. Now his regular neuropsych will be connecting through theVA as a community provider, rather than hospice providing his Seroquel and Sertraline refills. TBH I always doublechecked with his neuro anyway whenever hospice suggested a med tweak because mostly they were looking to add a sedative (or two) or other comfort meds like morphine, plus the haldol, lorazepam, clorazepam (?) etc. several things I pretty much declined. (That didn't go over all that well, but no reason to add meds and then more meds to deal with the side effects of others). Hospice was not providing any of his asthma meds until the recent multiple emergencies when I just insisted we needed help and couldn't ignore that it was chronic asthma, not end of life shortness of breath. So, they caved and sent oxygen and also the nebulizer refills. They did not admit him to hospice for that condition originally so it was a sticking point for them recently to have to address it. And probably contributed to his discharge (it did actually, per his nurse. Hands were tied.  Based on the metrics they were approved to monitor he is "better".)

So, in one way, this is what I had hoped for anyway with having all his meds and med oversight under one umbrella. It is better having all notes under one system for Drs/nurses to reference. DH is only eligible for VA health care, no pension or Aid and Attendance -- but his new Catastrophically Disabled, Priority 4 designation means there's no co-pay for his meds. Same as hospice. It is just covered through his VA status as opposed to his Medicare Ins. And I just have to figure out what to do if we need something in the middle of the night or on weekends (hoping for no more emergencies though), and also how to get the non-emergency refills delivered directly to our door instead of the post office box. Because...well, firefighters' assist post of last week lol.