Lloyd has started a few new things lately. He picks up every throw rug in the house and drops them in a heap right where they were. I have been going around straightening rugs all day every day. I hate to have to put them up. And he goes in the DR and moves the table and 6 chairs every day at least once. And he seems to have Lewy's on occasion. He used to lean to the side every once in a while, but now he leans forward. I don't know how he keeps from toppling over on his nose. Also a couple days ago I could not get him to open his mouth to eat. That seems to be over now. I know he is end stages whatever that means. I have heard the Lewy's/Pisa before, but what about the other stuff?
I've read that they will preceive throw rugs as holes in the floor. Perhaps he's experiencing that.
I know removing them is a home saefty tip listed for every room in the house: http://www.nia.nih.gov/alzheimers/publication/home-safety-people-alzheimers-disease/home-safety-room-room
Linda, when Sonny gets up during the night,he takes the chairs and puts them in a row in the kitchen,he also stacks the throw rugs on top of each other. He is always placing things in a row,he always did like things in order,I guess this is one of the things he still remembers.Oh,I wish I could see in his mind.He seems to be on a plateau right now,I will enjoy it while it lasts.What will be the next odd thing he'll do?
How sad to think that a throw rug is a hole in the floor. That would upset me too. My DH is so worried about pooping. He does not understand why that stuff is coming out of him. It worries him to no end. So every morning I just rub his back and let him know he is ok while he is going to the bathroom. So sad. The past few days have been hard on him. This morning he is trembling so bad. His blood sugar was fine. Guess his body is just misfiring. He is also bouncing off the walls when he walks. This started about 3 days ago. He is getting weaker and weaker. He has lost so much weight..... Oh and yesterday DD made him breakfast, and he tried to pay her for it, so cute in a way.....
Yhouniey, how odd that it's chairs and rugs for both of them. Sonny puts them in order and Lloyd trashes them. Blue, I can't get Lloyd to poop either. I am so tired of poop patrol. I even tried bribing him with Reese's cups, but that worked once. Lloyd bounces off everything when he walks. His poor noggin is forever having boo-boos on it.When Lloyd started on this, he weighed 155. I know he weighs less than 120 now. I have even tried Ensure. Weighing him just alarms me so I don't do it anymore. I just make sure he eats well and leave the rest (whatever that is) up to God. Lloyd is weak, too, unless something fires him up. Then, look out!!!
the leaning seems to be pretty par for the course in late dementia/parkinsons. if you look in NH there are many like that. of course there are other things that can mimic this as a side effect, meds could be a culprit too.as far as the not opening the mouth it took me a good while to comprehend this one. from one moment to the next they seem to forget how to coordinate that effort of moving the mouth. a disconnect of sorts mouth/brain. my DH does it regularly now for some time. but if you wait a couple of minutes and touch the utensil to the lips gently, he seems to open again. it can make it quite frustrating to feed them when its going on. takes forever. so we tend to get less and less into them. i opt for alot of smoothies high in calories rather and or very soft swallowed foods where alot of chewing isnt involved. its true they tend to see dark objects as holes think once again various aphasias. my DH as well would try to step over any dark rug on the floor. it must be quite scary to them. there are so many many things happening within their bodies and brain connects that can cause mayhem and they lose so many functions. slow death, long goodbye, what a terrible terrible disease to witness.
Divvi, he is taking next to nothing now. I finally got him off Namenda completely. He takes Keppra for the seizures and Neurontin to help him sleep at night and stave off the myoclonus. And he still takes Warfarin/Coumadin. He only takes 3-4ml of Keppra at bedtime and 3-4ml of Neurontin. He is prescribed 10ml of Keppra and 5ml of Neurontin. I stopped Trazadone about 10 days ago too. As far as pain, he isn't able to tell me anything so I try to be vigilant about things that could cause him discomfort like too much medication. The not opening his mouth has passed for now, but he also hangs his head which complicates feeding. The not pooping is going to put me over the edge. I try to get him to go every day, but no luck for about 3 days now. I am reluctant to give him anything to aid that because it will definitely end up in his pants and probably leaking out. YUCK! What do you put in his smoothies? I've got a Magic Bullet and a food processor so I could do that. We definitely need to get more calories in him.
3 days per the drs is when we start worrying according to my hospice drs. if hes not going on his own, you must try to give something or else he will get blockage and that is no joy either. believe me i just finished this part last week. its very painful and uncomfortable when they have to sit and havent pooped in days. i know everyone can relate here, i know TMI. but we tell it like it is. its life and we are in the middle. the ending up in the pants or leaking out is also a probable. they will also start leaking like watery liquid when they have blockages. the feces cant work its way thru the colon and the liquids work around it and its a pretty good sign they cant move the poop. so we have a choice, not pooping and blockages or cleaning them up after laxatives. its pretty much either or. i am using miralax stool softener , half a cap per drink, in smoothies made of 2 cups vanilla icecream,milk, a package of carnation instant breakfast which has alot of calories/vitamins, and sometimes fruit or variances of that. mine loves the icecream so i give 2 of the drinks /day. and its got him regulated fairly well. what happpened las tweek my aide said a stomach bug was going round and we thought DH had this, so i stopped the miralax due to watery diarrhea. turns out he was SUPER blocked up. so enemas and daily miralax has got him back on track. amazing how hes so much more lucid now able to 'go' again! geez. poor things. smoothies with anything high calorie say a dab of peanut butter is also good. fruit smoothies with orange or pineapple or lime sherbert *high calorie as well( is delicious too. i also supplement soft foods with lots of the baby foods fruits and blended meats. some days he will eat regular softer foods just fine. its a hit/miss
when they get dehydrated due to loss of drinking and eating they will get these bowel issues - its an ongoing process to know how to treat them! and it aint always pretty folks. but we do what we have to. they cant fend for themselves so its up to us. divvi
Thanks, Divvi. This is what I needed to know. I think I will try Phillips tonite and just put a waterproof pad directly under him. I have waterproof crib pads under the sheets all the time so I will just add one on top. I have been giving him a can of fruit pretty much every day. I guess it's time to get some Miralax and some baby food.
I hope this is not going tp be an ongoing thing with Sonny.Right now we are plagued with stink bugs.The other day he picks one off the table,sticks it in his mouth,takes a swig of water and says "THere I took my pill". I'm glad our son was here because he never believes me when I tell him the odd things Sonny does.Sonny did complain his stomach ached later,I would hope the chemical those bugs release would not be enough to hurt you. I do try very hard to keep them picked up in the house,is anyone else having trouble with these discusting bugs?
according to this article, you definitely don't have to worry about DH eating the stink bugs - you can be happy he is getting protein. There's even a few recipes for them: http://www.wusa9.com/news/watercooler/story.aspx?storyid=136847&catid=148
Yhouniey. Yes we have lots of the stink bugs. So far Ron hasn't taken to eating them, but he picks their heads off and stinks up the whoue room. I try to get to them before he does but often don't see them until after he does.
Yes, we have stink bugs too! DH ried to eat one but I caught him before he could put it in his mouth. I think he thought it was a pill too. Now if I can only prevent the dog from eating them.
My husband has started clapping and slapping his thighs. It's driving me crazy. He woke me up at 3:30am clapping. And then he started to pound on his chest like he was playing the drums. Did this for about an hour. He has FTD, so these weird behaviors are par for the course....but they do set my nerves on edge.
He also laughs like a witch and screams. He's been doing those less since the hand thing started. I rather have the laugh and screams...as he was doing them less.
LFL my dog won't touch the stink bugs,I tried to get her to get them,but she is evidently smarter than Sonny.Sonny doesn't slap his legs but continually rubs them,he says they don't hurt or burn but I wory he's going to irritate them. He did scrape the table cloth un til he wore a hole in it.Guess we should not be surprised at anything they do complulsively,their brain gets stuck on one thing at a time.
Deb112958, my husband has FTD too and he picks and clicks on his fingers...the noise is so annoying. When he walks he does it, watching t-v and even eating. I do believe it's part of the compulsive FTD disorder. Also, like to peel labels off the jars and bottles of things...then stuff them back in the jar
Lullibird, I understand. My husband would carry his plate into the bathroom if I didn't stop him. He walks around the house constantly too. He also makes this sucking sound before he will swallow his saliva. He has no swallow problems. My thoughts are with you for calm and patience. Things I know I'm low on..
Deb112958, I am low on calm and patience, too!!! His need to crawl up my a** and make a nest puts me over the edge sometimes. Then I have to stop and remember he must feel the need to be VERY close to me. As he has gotten much worse, I spend extra time cuddling with him in the morning before he gets up. He really needs lots more touching now so I give it to him. Screw everything else...it will all be there to be done after he is gone.
yes they do seem to need that extra closeness and it can drive you really bonkers. turning around and literally bumping into them/ mine watched me thru binoculars from 6ft away. and peeped at me from around corners with them as well. it was mindblowing and very nervewracking to say the least. he walked around with binoculars around his neck for a very long time. ha! linda mc your vivid description of sending you over the edge made me lol. i know not funny but our spouses can do some very strange things along this journey. calm and patience is a must if you can find it.
Oh, Divvi, you hit the nail on the head!!!!! I also turn around and bump into him all the time. I may have to get gates to keep him out of the kitchen while I cook. I am so afraid that he will touch something hot and burn himself. Now the binoculars story cracks me up!! At least some of our spouses do funny things. It sure makes it a little easier from time to time if we can laugh. A little over a week ago, Maria was sitting in the LR chatting with family and he walked up and poked her right in the nose for no reason whatsoever. She thought it was going to bleed. She told him that if he ever did it again, she was going to hit him back. I laughed so hard. The look on her face was priceless.
My DH has suddenly decided that he wants sex. Every night he is reaching over and rubbing my leg or bottom. He says "how come we never have sex any more". He doesn't remember he had surgery 20 plus years ago for cancer that left him unable to "preform".
He is totally incontinent as far as his bladder is concerned so I can't even imagine going through the motions. I know,TMI !!!