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Stubbornly independent mom Will Not Wear Hearing Aids
LoopyLynda
Posted: Wednesday, March 13, 2019 4:27 PM
Joined: 3/13/2019
Posts: 1


My mom who is in denial about having dementia to start with has refused to wear her hearing aids and it is now to the point that every conversation is now a big communication disaster. We end up having her ask us to repeat ourselves or has the deer in headlights look or she hears only a word or two and then assumes the rest and as a result we end up with her thinking the worst things or just hears half the story. 

I know that her not hearing people causes this viscious cycle to occur of she feels ignored or gets lonely and wants to talk but when you do you get exceedingly frustrated by repeating or correcting what she thought you said and then still she will remember only the wrong stuff and she gets frustrated and your frustrated so when she wants to talk next time everybody in the house avoids her a little more mind you not intentionally (well unless she is on the warpath) but I see everyone making excuses or keeping answers even shorter because you know what's about to happen in that she won't be able to hear you and then after the 4th time repeating you say it louder then she gets mad at you and starts saying you are yelling and screaming at her which is not the case. 

I know we have tried to get her to wear them for years now and she digs her heels in even harder. It may be too late but was wondering if anyone who has had a similar situation had any suggestions that might work...


caregiving daughter
Posted: Wednesday, March 13, 2019 5:17 PM
Joined: 11/27/2012
Posts: 1979


It's not denial. Please google the term anosognosia. It describes where someone with dementia has no awareness of their cognitive decline and for that matter, may have no awareness of their hearing deficit. Life is difficult with dementia. I have to admit that for the seven or so years I provided caregiving and oversight, worrying about the hearing aide was the first concern to go. To me, it's not a priority. You could ask an audiologist or clinical expert on fitting whether there is an aide that could stay in place for an extended period and then it wouldn't need to come on and off.
romiha
Posted: Wednesday, March 13, 2019 5:45 PM
Joined: 12/21/2014
Posts: 456


Well, for starters, my mom had advanced Alzheimer's.  She can hear great.

My dad,  however, is just slow, old, stubborn.  He got hearing aides FOR FREE from his insurance but refuses to wear them.  First, he said he can't feel them with his fingers to get them in - which is true.  He had carpal tunnel syndrome for decades and his quack of a doctor never addressed that.  I pushed the issue last year and he had a carpal tunnel release - to no avail - he had the nerve damage too long to be correctable.  SMH.  Anyhoo, I digress.  I reluctantly agreed to insert the oily little buggers into his ears (he can take them out), BUT he has decided that's just too much trouble.  He eats breakfast a good 30 minutes before I get mom ready and into the kitchen - and he's already gone from the table.

So, I understand the issue all too well.  I have to be sure to speak LOUDLY and CLEARLY and SLOWLY and half the time end up repeating even that.  It's maddening, I tell you, but you already knew that!   Oh, and when I tell him something, half the time HE DOESN'T RESPOND.  So I repeat the question and then he says "I heard you the first time."  SMH.  Can't. Win. For. Losing.

A few months ago, there was an issue with the toilet.  Had someone out to fix it.  I told dad it was the fill valve. "The what?" he asks. The FILL VALVE.  F - I - L - L valve, I tell him.  "Oh, the Sill valve" he replies.  No, dad, F as in Frank valve. 

When I'm brushing my teeth, he will ask a question from the room down the hall.  He can't hear the water running and assumes I'm just standing there, twiddling my thumbs.

I'm sorry.  I  have no suggestions for you whatsoever.  But misery loves company so consider me company. 
 


Kingmaker7
Posted: Wednesday, March 13, 2019 6:40 PM
Joined: 3/13/2019
Posts: 1


Greetings,

I read your post and I will say that my mother may be someone prideful and stubborn.  The Alzheimer's definitely enhances the existing issues.  I believe that we "caregivers" owe it to ourselves to get as much information as possible on this disease that basically affects the brain and cognitive ability to the degree that normal behavior can not be what we expect from our loved-ones, because it's not them.  It's the interrupted transmission in the brain due to the plaque buildup and tau tangles, I believe they call it, which cause blockages throughout the information highway.  I find that loving-patience, lovingkindness is what we have to exercise.  It can be a frustrating ordeal. You get to the airport and mom at 85, does not walk as well, especially with the foot issues, but she refuses to get in a wheelchair.  Initially, 1 year ago or so when she was diagnosed, I would lose it when I had to repeat myself, over and over. Now that I more informed, I am more patient with her.  I attend support group meetings when I can.  It helps to hear other people talk about their journey.  We learn from each other, strengthen and encourage each other with our stories and proven results.  It's not easy, but it's our duty.  These are our parents.  I will say that the best advice that I have been given is not to try to do this alone.  Build a support team of family, close friends who know and love you loved-one and medical professionals dedicated to the cause.  Your faith will definitely come into play. 


Greg G
Posted: Friday, March 15, 2019 7:23 PM
Joined: 2/8/2017
Posts: 829


Hey LoopyLynda,

Welcome to the club no one should have to join.  Glad you found the clubhouse.

Disclaimer; dad had hearing aids and dementia.

As caring daughter mentioned anosognosia is a real thing and often families of PWD do not realize what it is.  They just think the person is doing all this on purpose to spite the caregiver.  Totally incorrect!  Dementia is ruining the brain and it's functionality.  No choices involved by the individual.  And as Kingmaker explains, caregivers have to change their tune because the PWD is unable to.  

In this particular case, caregivers have to really work at communicating with the dementia patient who is also loosing or lost their hearing.  Just as you would talk with a person whom has a hearing deficiency; a little louder, a little slower, sometimes a little simpler, a little more enunciation and looking at their face, the same applies to someone with Dementia but even more so.  So much audio distractions in the world today even with having good hearing.  

Another part of this dementia journey is that your LO with dementia is not able to change their ways of thinking.  Especially those with anosognosia.  Those WITHOUT the dementia have to change.  So you have to figure out what is the comfort level of talking with your PWD.  And pass that level of talking along to others.  

Now I lost my train of thought because of sleep deprivation.  If it comes back to me, I'll continue on this.

Good luck and best wishes, Greg


selkirk60
Posted: Friday, March 15, 2019 10:45 PM
Joined: 1/11/2018
Posts: 70


Isn't it frustrating when they won't wear their hearing aids?  But there isn't much you can do.  Dementia gets a grip on their brain and things just go haywire.  Even if they do wear the hearing aids, the brain just isn't processing language and conversation like it used to.  

I can't make any suggestions except to keep her hearing aids safe while she is in this phase.  It may pass. My mom wore her hearing aids for quite a while, but then she started fiddling with them all the time and got them out of adjustment.  Then she entered the phase of hiding things and forgetting where they were.  She lost her hearing aids (along with 2 dental bridges) during this period. They have never turned up, so she probably tossed them into the garbage.  She hated them anyway. 

We all try to be patient, but it's soooo hard sometimes.......


harshedbuzz
Posted: Saturday, March 16, 2019 6:27 AM
Joined: 3/6/2017
Posts: 1277


Hi and welcome.

This is a common issue. There seems to be a relationship between hearing loss and dementia, so many of us have a LO with both.

Some thoughts based on what I saw with my own dad.

- As dad entered the middle stages of dementia, he seemed to develop some sensory processing issues. He became very fussy around clothing and food textures, lighting and temperature had to be "just so" and sound irritated him.  He often took his hearing aides out if there were more than a two people in the house. Around this time, we got him sexy new hearing aids which seemed to cut down background noise which seemed to help.

- Dad kind of time traveled as the dementia progressed. When he went back to the 1980s and earlier, he didn't recognize that he couldn't hear and needed hearing aids. 
-As he approached the later stages of dementia, he had trouble even processing what he did hear. While he had speech, sometimes he couldn't really follow a conversation that he wasn't driving especially if there were more than one person talking with him. And he was slow at processing, so in a group conversation he would get trampled. His attempts at conversation were scripted and highly repetitive which was upsetting for some family members. 

Frustrating as this is, it's better than my dear friend whose mom wears her hearing aids religiously and nightly tries to put them in her denture bath. 


jfkoc
Posted: Saturday, March 16, 2019 8:56 AM
Joined: 12/4/2011
Posts: 16459


and then there is the issue of changing the batteries!
Jo C.
Posted: Saturday, March 16, 2019 9:14 AM
Joined: 12/9/2011
Posts: 9340


Hello LL and a very warm welcome to you.  I can only imagine how frustrating this is and of course, that adds to everyone's stress including the Loved One's (LO) who has the hearing loss.   I so hope that another Member,  King Boo, comes along soon; she is a highly educated hearing specialist and she is very informative and helpful.

Okay.  Dementia effect, we get it and that may be part of or all of the problem . . . . however; it is also important not to blame dementia on various changes in our LOs without looking for that which is NOT related to dementia.

Hearing aides.   One is certainly in a thick forest when it comes to them; there is so much we lay people do not know; it is a highly specialized field.  Some items we may not be aware of can be problematic and it would take a very patient and skilled professional to assess what may be contributing to this.

Hearing aides can be technically problematic, or become problematic over time if the hearing issues evolve.  My step-dad was a monumental example of that.  He had multiple different kinds of hearing aides because he used the storefront sales stores, and finally, after stepping in to direct him and making arrangements, he had been examined, tested, fitted, etc. by a licensed professional.   However; he still had difficulty.  Actually, he had troubles with all hearing aides; he never adapted well to even the last.  There were problems with aids and they caused him discomfort both physically and in the operation including sound issues despite having them adjusted time and time again.  He lost some, (get insurance), and he would misplace them and send us on hunts; but when the expensive aids were causing him problems, he actually took them apart trying to fix them . . . of course; you can imagine the outcome of that; and they were astronomically expensive.

Best to get your LO to a certified, licensed audiologist; not a store person, and have a complete reassessment, have the aids checked out and see if there is a technical issue or something that needs to be changed.

When this sort of thing happened with a 93 year old uncle who would not tolerate hearing aides, my aunt got a whiteboard and wipeoff pens and communicated by writing.  Of course, the LO must be able to process reading and writing and not all of our LOs can and it is a tedious process with many convolutions and inefficiencies; but it seemed to work for them.

Gads, in the long ago olden days, they used ear trumpets. Can you imagine?  In our case, I would have had to put a string through it and hang it around my LOs neck in order to have it on hand all the time, and then I'd have to be the one to insert said trumpet while yelling . . . . and  basically I do not think that they worked well for most that had real hearing issues beyond being a little hard of hearing; but I guess it made one feel they were doing something.

Hopefully, if reassessment finds that there needs to be some adjustment in one way or another and it "fixes" things for your LO, that would be the perfect outcome.  Sigh.  We know how often we get "perfect," on this dementia trail, but worth a try just in case something magical happens and all is fixed.

Let us know how it is going, we will be thinking of you.

J.


Mimi S.
Posted: Saturday, March 16, 2019 11:33 AM
Joined: 11/29/2011
Posts: 6938


Just to reinforce the importance of a good audiologist. I had my hearing tested by such. The fre was a problem. However, I was told there were three types of hearing loss. Two can be helped by hearing aides but not the third. I had the third. Saved me 5 grand. 
The other problem i hear about from users is that all noise is amplified and sorting out the extraneous noise can be frustrating, if not impossible.

jfkoc
Posted: Saturday, March 16, 2019 11:54 AM
Joined: 12/4/2011
Posts: 16459


The hearing aids today can really help with background noise. My audiologist had me wear my aids for several weeks so she could appropriately adjust my aids.

Again, one has to keep up with batteries and be able to know when to change them  and to be able to do so. They require some dexterity.

At some point you are going to have to make the effort to

1.   get her attention

2.   get on eye level

3.   speak slowly

4.   simple sentences

5.   low tone.

Then you must wait for her to compute what you have said

Why not start now and avoid some of the hassle. I tell people that I do not hear well so they need to take their time talking to me.


Mom's Baby
Posted: Saturday, March 16, 2019 12:24 PM
Joined: 12/19/2011
Posts: 1128


I realize that of course some of our LOs have actual hearing impairments... but I will say that dementia certainly does take away a person's ability to comprehend sounds, whether they have an actual hearing impairment or not. 

When my mom started to show some dementia symptoms (saying "what" a lot and of course, not remember what someone had said to her), I asked my dad if maybe Mom needed to get her hearing checked. He said, "No, her hearing is better than mine! I can say something under my breath across the room and she'll respond!" 

As time went by, the only way you could communicate with Mom was to make sure you had eye contact and spoke very slowly and clearly. Even then, she wouldn't understand much of the time. It was her brain that was broken, not her ears. 


King Boo
Posted: Saturday, March 16, 2019 8:45 PM
Joined: 1/9/2012
Posts: 2868


JoC makes the best point - hearing aids are not just a retail item, but require professional expertise to properly fit.  Otherwise, a hearing aid is just a very expensive paperweight.

 

Reading your details, the following points jump out at me:

1.  If Mom has rejected the hearing aids she was fit with FOR YEARS, the very good possibility exists that there was a reason.  Poor fit, physical discomfort, inappropriate programming and insufficient counseling.   

2.  How old are the hearing aids?  It is possible her hearing loss has significantly progressed, and if an old prescription that is in the hearing aids does not have enough power or the wrong prescription, they could actually provide little to no benefit.  Hearing aids have come a long way with their sound processing and are much more comfortable and efficient to listen through. 

3. Hearing aids could be dead, broken, or distorting.  I always tell caregivers that they need to do a daily listening check with a hearing aid stethoscope so they know what a hearing aid sounds like when it is working properly - that way, you can recognize when it isn't.   Also of paramount importance is a battery tester - they cost all of 7 dollars but let you check whether the hearing aid battery is good.

4.  Who fit the hearing aids?  My preference is for an Audiologist, who holds at minimum a Master's degree in the field, many hold clinical doctorates.  

5.  WWID?   Have Mom seen by an Audiologist for an updated hearing test, have her hearing aids examined and checked, checked for ear wax and have an in office demonstration of new technology.  You don't have to spend top dollar on a good set of hearing aids - many good mid tier options exist.    Find an established Audiologist, possibly in a long standing Audiologist owned private practice, that has a return priviledge for any new hearing aids (less professional fees) if needed.   An Audiologist has at minimum a Master's degree - check carefully, there are many who 'sell' hearing aids that are not an audiologist.

Dementia makes everything more difficult.  Sensory issues can come into play - sensitivity to touch, hypersensitivity to stimulie, etc.

While many correctly anticipate that the ravages of the disease will make hearing aid adjustment and acceptance difficult or even impossible, I have worked with many through the years where the adjustment went well and significantly enhanced their quality of life.  I remember well one patient with Alzheimer's who was regularly brought in by his caregiving daughter.  Even when he lost verbal language, he could hold his hearing aid in his hand and look at me imploringly - the smile on his face when he could hear again amazing.  It is best to try.      New hearing aids come with one time only loss and damage coverage - I recommend this be extended for dementia patients due to increased risk of occurance.

 

As a stop gap measure, there are assistive devices that might help at intervals if ultimately hearing aids are not used.  A Pocket talker is a pair of lightweight headphones that plug into a small box that has a microphone in it.  Cumbersome to use. . . . .There are also TV systems that work with bluetooth much like hearing aids that can keep the volume low for the rest of the house whilst the hearing impaired family member uses headphones.

Lastly, if Mom still uses the phone and can still read, a Captel phone can be a gamechanger.


Jo C.
Posted: Sunday, March 17, 2019 2:19 PM
Joined: 12/9/2011
Posts: 9340


Thank you so much, King Boo; great information and I learned so much I was not aware of. 

J.


jfkoc
Posted: Sunday, March 17, 2019 2:31 PM
Joined: 12/4/2011
Posts: 16459


from another post

Loved one was taken to an otolaryngologist (sp) who removed large glomps of wax


 
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