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Mother is fading away; she's at about 80 lbs now. She does not move except her hands though she's propped up in a wheelchair. When I last visited her, she pulled at the cloth on her pants and put them to her mouth and sucked on the fabric. I gave her a stuffed animal for Valentines, and she put that to her lips like she was feeling it but not kissing it. When I visited a week ago, she let me feed her one spoonful, but she took the paper napkin on her lap and took a bite of it. The ladies who feed her say she refuses food most of the time and will still bat at them to make them stop. It just reminds me of a little baby who does not know much at all. She is losing 5 lbs every 2-4 weeks which I know is normal at this stage... What do I look for next? I don't know if she's having swallowing problems since I have not seen her swallow except that one time a week ago, and she chewed the spaghetti for all it was worth.

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I remember listening to Teepa Snow talk about late stage dementia & how patients often begin putting everything into their mouths, similar to how babies begin discovering their world.

Chewing on objects; common in dementia
By: Patsy Pope

Elders in severe stage dementia often have a need to chew or suck on objects. Objects such as clothing, wood, leather, other people even, which can all seem inappropriate and disturbing to carers. The drive behind the behavior is a need for comfort. Just as infants like to suck or bite, so do elderly in the severe stage of a dementia journey. It brings sensory stimulation, a rhythmic movement and a sense of security. As we want to fill this need and bring that much needed security and comfort to the person, we should assist in finding the right, safe, items to use for the purpose.

I would recommend Chew’lery! Yes, chewable jewellery. Originally designed for autistic children, these products can be used with elders with dementia. [Often products for the autistic spectrum work well with dementia elders.] The designs are bright bracelets and necklaces, especially suitable for ladies. Another is a ‘grabber’ or ‘chew kit’ from Ark. Theses are non toxic, strong, with a built in handle, and work great for gentlemen with strong jaw action.

Remember that chewing and sucking are human traits that we all do daily, not just with our food. We bite on the top of pen, some people suck on a cigarette, many adults suck their thumb under duress, we also like to kiss! The need to suck and bite is primal and is part of human life, if an elder with dementia shows a need to do these things, it is not abnormal! It is a basic reflex and need, one in which we can offer assistance by finding the right object for use.

Here is a link to the Chewlery:
https://www.arktherapeutic.com/chewelry-for-adults-variety-pack/

Here is another link to a great website discussing the stages of dementia and Alzheimer's, what to look for in each, as well as the duration:

https://www.dementiacarecentral.com/aboutdementia/facts/stages/

Wishing you the best of luck during this difficult stage of the dreadful disease. May your mother's end be swift and painless for all concerned. Hugs
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cherokeegrrl54 Feb 2020
Thank you, lealonnie, you always have the best information to help us all.
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I know something about how concerning this is. My LO (cousin) does the same thing. She will put anything that comes near her mouth into her mouth. She is in a highback wheelchair, so, is not able to get to any items the staff does not put in front of her.

Her mouthing is similar to infant behavior. It was explained to me that her mental level is that of an infant. My LO also sucks her thumb at times and drools. I'm shocked, that she still eats well, (is hand fed), but, she is still just under 80 pounds and losing steadily. I just don't know how you live when your body has no muscle or fat.

My LO is also agitated at bath time, which, I think is due to pain. Those bones on skin must hurt, so, I've requested that they give her meds for pain before hand.

Is your mother on Hospice? The hospice nurse told me that my LO still is not having breathing issues, so, I have no idea how long this may continue. I wish I could offer more. Maybe, you'll get some more comments here. Oh, you might look up the term cachexia. It seems that with this condition, no matter what you eat, the weight still comes off. Eventually, the appetite goes too. I'm no expert, but, you might ask her doctor or healthcare team about it.
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GA, She's loved the food from this facility when she was in a better state of mind. She went from her immediate post-cancer surgery weight of 100 to a portly 160 in a year. She was eating everyone's leftovers that she could reach! She always had food issues and as a hoarder, had not had refrigeration or traditional cooking for decades. I've read how children and adults who have had food insecurity tend to hoard food by either hiding it or eating it all, and that's exactly what she did. She's beyond speech pathologists - she's not verbal. And she's on pain meds around the clock for her arthritis which would take care of any tooth pain as well.

Sunnygirl, those are great insights about being like an infant. It's good to hear someone else having that observation as well. She's been at this facility for years and years and hospice is on board. Her nurse is so sweet and keeps me informed of any changes. She has an aide that won aide of the year several times and she is the most gentle person! She is being showered an hour after meds.

I did look up cachexia and saw that seizures were associated with it as well. I noticed some odd vocalization in time with her hands jerking slightly - maybe a half inch - and maybe that's some kind of seizure process starting. I can just imagine how deteriorated her brain must be.

CWillie, You are right, it's going on so long and so slow. We started hospice on 9/11 and it's been 5 months of rapid decline. I don't know what's left to decline any more except swallowing. She's not really sitting, but propped up in her wheel chair. It *is* painful to watch the decline and I'd like her suffering to end. :(
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Even though her food was pureed my mom often chewed and chewed as well, I guess it's instinctive. I always said I would never attempt to force food but fortunately that was something I never had to contend with, like Sunny's cousin my mom opened her mouth like a little bird when the spoon came close enough for her to see. This EOL period is heartbreaking to witness and unfortunately can go on much longer than anyone who hasn't encountered it will ever believe. I'm sorry.
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Surprise, thanks for the update and response.   I wish I could offer some insights, but I'll offer (cyber)support instead.    I think sometimes people face situations that have no answers, no solutions.    I am continually amazed at what others face, and often realize that I was really lucky in my own situation. 

I hope that somehow you can achieve peace, solace, and especially respite.
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Garden, thank you. When we took her on, we really thought this would be a dim memory in 5 years. Here were are almost 8 years later, with her having survived her cancer, broken pelvis/hip, broken arm, constricted esophagus, and having so low hemoglobin that she had to be transfused several times before that cancer surgery, w no chemo. She's not in there, but her body keeps hanging on. What a long goodbye!
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Just a few thoughts....

I wonder if she's just not getting food that she likes.   I wonder if she's developed the condition that prompts people to eat things that aren't food - PICA??

Has something like pudding been tried?  Other foods that she used to really like?

You might ask for an evaluation by a speech pathologist, just to ensure that there's nothing amiss there.   If she liked spaghetti and chewed it, that might be a clue.

I'm also wondering if she has a tooth problem; if so, she might be avoiding anything hot, cold, or that hurts when she tries to swallow.

I've had no experience with this so I don't have much insight to offer.   But I do want to extend concern and support for you and your mother, and the challenges you're both facing.    This must be heartbreaking for you.
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Lealonnie, Thank you! I haven't found much about late ALZ so this is fantastic to see. I'll see about the chewlery this am.
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