My Mom (88) has dementia and recently feels she doesn't need to wear her neck brace 24 hours a day. Any suggestions? - AgingCare.com

My Mom (88) has dementia and recently feels she doesn't need to wear her neck brace 24 hours a day. Any suggestions?

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She won't leave it on. She gets agitated when we tell her she needs to leave it on because she says she did not need it and did not break her neck.

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Ugg - sorry for the keyboard's typo - teehee -

"BUT at night - OFF [not of] it goes: it jams up into my ear/and jaw - resulting in TMJ and wow the pain is worse than having no brace.
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i have had to wear a neck brace [soft cervical collar] for over 30 years - and it will be a life-long accessory. i had 4 crushed nerve roots in my neck, required surgery, and now a multitude of cervical/spine related problems. Neck braces CHAFF! The 'sock' really is not soft, and it scrapes and chaffs: add humidity or hot weather, and watch out for the resulting heat rashes as well. My neck does not move, but the reason is to hold up my head, to try to reduce the horrific pain of muscle spasms. i am supposed to wear the brace 24/7 -- i cannot. Even though the brace is fitted by an ortho specialist [or ortho supply store] and has a 'chin dip' [to prevent forced neck flex] - and it is more comfy to eat with the brace on, because the chin dip permits the bottom jaw to move; BUT at night - of it goes: it jams up into my ear/and jaw - resulting in TMJ and wow the pain is worse than having no brace. Instead, i have 6 throw pillows of assorted sizes [from JoAnns Fabric store -- and i covered them myself with washable materials - easy sew]. One is a neck roll -- i took a towel and rolled it around the roll, used scrunchies and tied ribbon around each end [picture a Tootsie Roll] -- and these are placed in strategic points to keep my neck support while it gets a break from the neck brace. It also gives time for the brace to 'relax'. Be sure to wash to cover - the 'sock' of the neck brace every time the laundry is done. For that, you need a back up of about 3 or 4 socks [available at the med supply store - usually sold by the yard: just measure the brace and add about 3-4" for one brace - that way you can tuck the raw edges underneath and it looks better. i still use 3 regular bed pillows at night - to support my back, and two are situated like a V and my head is inside the V - while the throw pillows are pushed where needed [sometimes neck pain radiates down the arm, and my arms need the support -- or sometimes it adds to back pain, and i need them under my knees, to help the back spasms. Also ... can you mom use topical analgesics? One of my favorite is either from the Dollar Store [has an odor though] called Muscle Rub; BenGay is available unscented now; but MaxFreeze or BioFreeze is really great. Mom has L4 radiculopathy and loves it. IF your mom is ok with heat,

Thermacare for the neck is easy to apply [light adhesive at each end] and truly is like a portable heating pad -- but do NOT use it with ANY topical analgesic -- that warning is also on the label and on the box. It may make it more comfy - and since it is form fitting, might suit her at night.

But it truly does depend on the true reason she needs the brace. Is it to prevent movement? I'd be concerned about TMJ. Chaffing - i use baby powder, [talc] or Gold Bond -- sometimes i need to use generic Benadryl for itching - but if you wrap a pretty scarf or cotton cloth around the brace - it will minimize or take away the chaffing. The 'sock' that the brace comes with is ribbed - and it causes sweating/itching. So a cotton "tube" that the brace can slip into [assuming it is a velcro-connecting brace] will help tremendously. i used to wear a pin on my brace - all it did was bring attention to it, and people would comment on how nice it was to put a pin on the brace. So, if she's okay with comments like that, a pin of her choosing might work for daytime.

But in essence, it does boil down to the true/real reason she needs to wear it. Did she complain of pain? If so, what type - did it radiate down the arms? You'd need to ask her doctor -- [sometimes you need to assume they already know that you are the caretaker of your Mom's medical or personal needs] - don't let that HIPPAA scare you off of making the call. Just say " i am quite concerned because she's taking the brace off especially at night. Will that have an obverse effect on her health? i need to know because i'm responsible for dispensing her meds and her overall care. She doesn't seem to be able to explain to me why she needs it -- what is the severity of her condition?" If you are direct - you will get answers because they don't want to get in a tussle for withholding info that you need - you're not interfering, but trying to assist the doctor in implementing his instructions re her care and she's your mom - you want her to feel better, and NOT be in pain. If need be, later in the conversation, offer to stop by and sign whatever you need to so the doctor's office is protected... but you're not willing to put your mom's health at stake. How's that....
Blessings to you .....
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Duct tape!!!!!!!!!!!! My solution for everything now I no longer have access to bailing twine
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Decorate it and make it pretty. They have stick on rhinestones at teenage accessory stores. Tell her that it will make her neck lovely if she wears it until the doctor says to take it off.
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Friendly persuasion.
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If there is a good friend or another family member that can advise her the benefits, it's temporary (if applicable) and the same information you probably have told her LOL (she must wear the brace) it will probably be more receptive.

My mom is 85 and when Dr Oz or her church friend says the same thing I have already advised she actually tells me. We make a joke out of I say NO really, but I thought someone told you and she just laughs she remembers only hate to admit it. That's her way of letting me know that I was right.

Outsiders are the best choice.
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What's it for?
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Talk to her doctor. The doctor will talk with you if you have a signed HIPAA release.
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Wow. I feel your pain! So often persons with dementia don't remember the need for various devices and get very agitated. My mother could understand her catheter when we explained it to her, but a half an hour later she wondered what this weird tube is doing strapped to her leg, so she pulled it out. Repeatedly. Ouch! Some patients do this with a feeding tube.

And your mom takes off her neck brace. Sigh.

How long is she expected to need the brace? Talk to her doctor about the consequences of her not wearing it. Weigh the benefit of having it on for x weeks versus the agitation it causes her.

If discussions with the doctor convince you it is worth suffering through this struggle for the necessary period, are there ways to make it hard to remove? A velcro strap around it that opens in the back? Turtleneck sweaters over it? A pretty scarf tied in back? (Obviously I haven't dealt with a neck brace, but you get the idea, I hope.) We solved Mom's problem by having the aides always dress her in pants or pajama bottoms so the leg tube was always covered.

If this is very agitating for her and also it is temporary, ask the doctor if there is something she could be given to calm her down, just during the brace period.

Do come back and tell us how this goes. We learn from each other!
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