I guess he told me!

ButterflyWings

Whenever the caregiver or I look the other way, DH now spends his day grabbing anything in reach and putting it in his mouth. Chewing off a piece if possible, and gnawing on it forever, it seems. This requires constant vigilance and redirection.😟It is impossible to put EVERYTHING up. CD case, towel hanging on the rack where it belongs, couch pillow.

In the blink of an eye yesterday, he got the adult wipe that I just pulled out to freshen him up. While my hands are occupied with preventing him from falling or peeing on the floor - this man grabs a non-flushable, inedible snack. Sigh. I grabbed it but he was chomping down and ripped a piece off. Chewing, chewing (chewing…). I got bitten a few times but eventually got the piece out before he swallowed it. It wasn't too large but could cause gi upset.

Used to be that if I looked away for a few seconds he was trying to walk out the nearest door. Now, when I turn my back, he is getting into something and tasting it. Anything. In seconds. So, a moment ago I ran (literally) into the kitchen to grab more juice for his afternoon meds and heard a rustling sound. I yelled (nicely) "Put it down (DH) - please don't touch that, HERE I COME WITH YOUR JUICE!" and ran back.

Thankfully he had not yet taken a bite out something not fit for consumption. Whew! But yes, he was holding a piece of mail that he had reached to the other end of the couch to retrieve. On the back of it, I had jotted some info from an earlier phone call.

I gently took it from him (which doesn't always go well) explaining, "Thank you. I need that paper back, it has some really important notes on it". Darned if this fairly non-verbal man didn't reply in a snarky tone, "Well it doesn't look like you're taking very good care of it". Guess he told me! I had to laugh out loud.

ronda b

https://alzconnected.org/discussion/69382/i-guess-he-told-me

ronda b

Does he have Picca,I think that's how it's spell. Let your dr know what he is doing. Can't remember if there's a treatment for it.

M1

Rhonda i believe pica is a term specific to eating dirt/clay that is seen in people with severe iron deficiency. I think this is strictly hyperoral behavior.....good story BW, but still! I know you're exhausted....

trottingalong

you write a good story and boy he did tell you. That would be exhausting though.

Quilting brings calm

Reminds me of toddler behavior…everything goes in the mouth. It’s so hard to watch the regression

ButterflyWings

Yes as M1 said, it is the hyperoral aspect of Stage 7. And QBC it is exactly like toddler behavior. The last couple of days have been a lot. Hoping it subsides a little bit. There is no rhyme or reason. Like, it is not just paper or pretty colors or soft things. It is anything.

If we were sitting in a sterile room, he'd focus on his shirt collar or the drawstring on his pants. And if he can get it to his mouth today, its going in.

I couldn't believe he would chastise me as irresponsible for leaving something to catch his eye when I dashed into the kitchen for a refill. Hilarious that he could put it into words. In a way I guess he's right lol.

sandwichone123

Does he have something sturdy (I hesitate to suggest a dog toy but they are designed to withstand tough chewing without breaking into bits) that he can safely chew on?

ButterflyWings

https://alzconnected.org/discussion/comment/211001#Comment_211001

His nurse feels strongly (and I agree) it works best when we don't encourage or reinforce his chewing action. That is the reason for moving to pureed foods last November. When he starts chewing anything, then he chews everything. He wasn't having trouble swallowing per se, though he was seeming to forget to swallow — chewing for hours. He was starting to pocket food too, and it became a real choking and aspiration risk.

HB suggested some chew jewelry, but I think he could get fibers off of that because he has done that with paper towels and the wipes and even a piece of foam pillow wedge before the aide realized what was happening. That is obviously a serious choking or even poison hazard so I just don't want to encourage the chewing. We are trying to avoid it at all costs. Some days it is easy to redirect him and he doesn't keep attempting. But this week it has really been incessant. And it isn't that he is hungry or self-soothing per se. It seems like it is more of a reflex thing that once started, he keeps looping that behavior.

Now you are making me think that maybe I should begin to keep a smoothie or Boost or something nearby that it is OK to put in his mouth, does not activate his chewing reflex, and gives him nutrition as well. I will do some research and keep you all posted. *edited to add his 80 year old teeth are not in very good condition either, so I think we might cause some dental emergencies if he chewed on a teether made of hard rubber or something like that.

ImMaggieMae

ButterflyWings, having to watch him constantly takes on new meaning with this chewing or putting everything into his mouth. It makes having to watch my DH when he gets up and walks short distances on unsteady feet seem easy by comparison. How long has he been doing this? Hopefully it’s a phase that won’t last long. What about putting a small amount of something spicy/hot on a non food item he picks up? Would he notice the taste and be deterred? Then again, you don’t want to discourage him from eating. Are the puréed foods just because of this problem or does he also have swallowing issues? It just seems like such a weird behavior, one I haven’t seen mentioned here before.

You mentioned dental issues. Does the disease have some unusual effect on teeth? My DH’s front teeth are in terrible shape, probably from not brushing well or sometimes in the last couple years, not at all. He took perfect care of his teeth up until dementia a couple years ago. I feel horrible that I didn’t notice it sooner, even when trimming his mustache regularly. I had to lift his lip to see those teeth. I was shocked that it happened so fast and it was my responsibility. I don’t think my own teeth could possibly get that bad in such a short time. I’ve had him to the dentist a couple times since and had lots of X-rays but the only solution would be to pull several and I would be afraid it would stop him from eating, not to mention the aftercare and anesthetics. He says he doesn’t feel any pain from them. The dentist agrees that he probably doesn’t and to do the best we can with brushing with a prescription floride toothpaste to keep things from getting worse. I didn’t mean to hijack your thread, but when you mentioned teeth…

ButterflyWings

https://alzconnected.org/discussion/comment/211143#Comment_211143

This is how the Stage 7 hyperoral behavior shows up in my DH. It is fairly new (several weeks) at least at this level. He first randomly started eating his paper napkin at least a year ago, shocking me and the aide. There was still food on his plate and I thought he just got confused. It was many months between his picking up something else and biting it. It has just increased in frequency and his opening the moisture barrier container and spooning out (and eating) 2 or 3 big bites recently is qualitatively different.

No, the pureed food decision initially started when I told his hospice nurse he was really pocketing food - spooning it in but not swallowing and chewing, chewing, chewing. That created a choking risk and aspiration risk but otherwise he has no swallowing issues at all. We don't have to use a thickener for beverages for example.

The chewing his food for hours and overfilling his mouth became noticeably dangerous around Thanksgiving as he'd fall asleep with a mouth full after hours of chewing (but not swallowing), and then wake up inhaling, coughing, and choking. So - she said we need to avoid chewing or aspiration pneumonia is imminent. This is when I realized he was no longer Stage 6, because it is a sign that he could no longer feed himself (Stage 7 pocketing.) I had not thought of it that way before but on re-reading Tam Cummings' Staging models it was clear.

It does seem that if I can do all pudding texture purees and protein smoothies for every meal, he is not starting to bite or chew anything. But once he starts, he is trying everything. Not hungry, but it is weird and dangerous. And, yes, exhausting. I used to have to be line of sight in the next room to keep him from leaving. Now it is line of sight and arms reach to grab the fluff he is pulling out of the Chux, he is sitting on, so it doesn't go in the mouth.

I used to think he would be ready for the fidget quilts or things like that at this stage, but no way. I did not anticipate this. I'm afraid he'd pull off some of those things or just crunch down on others and maybe cause a dental emergency after all. I do not want that tooth pain to start. Or infections. It is last phase of life for DH and I don't know if this is what will take him, but it is just something I have to stay on top of. Trying.

Teeth

Yes, I was shocked to discover the deterioration one day and it did come on suddenly like you said. Dentist looked at a photo I sent her and said he was chewing on his front teeth. The wear started there. Another agreed it was also due to grinding, and hospice thinks it also may be due in part to one of his inhaler meds since I couldn't possibly get him to brush or rinse after each use. I was lucky to get him to take the medication at all. I asked Medicare and also VA and hospice for a year when it started being evident and no one will address any dental issues (unless service connected and this is not due to an injury or combat etc).

Like your LO, DH denies any pain and based on how he eats (food or other), they don't bother him at all. They look awful though. The few he still has now, after all the deterioration. Age as well, I try not to worry as long as he is comfortable. But like you, I wish I had known this might come with dementia! Once I heard him crunching up something when there was nothing else around - it was half a tooth and he chewed until it was gone 😕I too, feel just awful, but we know we are doing SO much to take care of them. Really doing the very best we can.

Kibbee

That sounds like a lot to oversee and manage - exhausting really to have to always be on alert. Just a thought - if you were able to keep something on his hands, like mittens, would that hinder his ability to put things into his mouth? Might be a challenge to get him to keep them on his hands…but maybe if they were sewn onto the ends of a long sleeve shirt so he could not remove them? Of course for all I know, he may just chew on the mittens then. Oh my - the things that dementia causes. So very sad and difficult.

ButterflyWings

https://alzconnected.org/discussion/comment/211279#Comment_211279

Yes, he’d chew on mittens. I’m pretty sure he’d bite and gnaw off fibers and threads and then may gag or choke.

Example, he can’t really read anymore obviously but still likes looking at the words and pictures in magazines (sometimes upside down) 🥲 but now, after a while he might just close the magazine and start trying to take a bite out of it. No rhyme or reason. I do hope this will stop soon. For now, I just have to watch constantly and redirect him.

ImMaggieMae

@ButterflyWings, does your DH sleep with his mouth open? Mine does, head tilted back and mouth open fairly wide. He barely moves from sleeping on his back like that all night. His bottom teeth are still in pretty good shape. It’s just the front top teeth. He lost a crown from one of the back teeth, but most of them are ok, since many have crowns from previous dental work. He doesn’t use any kind of inhaler meds. I’m pretty sure he doesn’t grind his teeth and I don’t see him chewing with his front teeth, just uses them to bite things like apples. Does your DH sleep with his mouth open? I ask because I wonder if that has something to do with those front teeth. I just don’t see how they deteriorated so quickly. He’s 76.