To get hearing aids or not with dementia?

Wow Jessiebelle...I could have written your post almost verbatim! Only difference is we did get MIL a hearing aide. Her PCP referred her to an ears, nose and throat guy and we took her to get tested. Found out she had moderate loss in one ear and significant loss in the other. This was a few years ago and the dementia was still pretty mild. We left the decision up to her whether she wanted a hearing aide or not and she didn't even hesitate - definitely wanted one - so we set up the appointment for her to get fitted. There were three price ranges she could choose from (and of course Medicare doesn't cover hearing aides so this was all going to have to come out of her pocket) so she opted for the one in the middle.

Fast forward.....$1800 and three years later she almost NEVER uses it. She has very poor manual dexterity...the style she picked was the little "bud" type that just snugs into her ear, and she can't even hold onto it long enough to get it in there, much less position it correctly. She worries about "wearing down the batteries" and how much it costs to replace them (???). She worries about losing it....running over it with her power wheelchair (a distinct possibility) She doesn't really like the way it "feels", but had no complaint about how things sounded.

I also think part of her problem is comprehension...I wonder sometimes if the dementia causes words or phrases she hears to get jumbled up somewhere between when they leave our lips and get processed in her brain. I can say something that hears and understands perfectly (eg. "Would you like a ham sandwich?") and responds to appropriately (yes). Then a moment later I can ask in the exact same tone and volume "Do you want mustard on it?" and she'll look at me like I have two heads. Dont even get me started on tying to converse with her over the phone - it's an adventure every time!
On a regular day to day basis she doesn't really need it all that much because the only people she converses with are my husband and I and her PCA, and we all know how to speak loudly and clearly enough, make eye contact, etc. to get through to her. We sometimes offer to help put it in for her when she's attending a family gathering or going to a dr. Appt. - sometimes she accepts but more often than not she declines ("no, don't bother with that. I'll let you be my ears.") and even when she does wear it she still has trouble following, comprehending and remembering what is said.

Don't know how to advise you really. If I had it to do over again knowing what I know now I think I'd either opt for the style with the loop that goes over the ear or save her the $1800 altogether. I think it would be worth getting your mom tested at least - medicare will pay for that, and it will help you to know what level of impaiment she has. Then you can decide if the potential benefits outweigh the cost.

I think that loss of hearing, even mild, in an older person especially, can almost cause its own dementia, or lead to social and mental decline, as comprehending what is going on around you and participating in social events becomes more and more challenging and draining. I saw that with my grandmother. She was sharp as a tack until her hearing started to go, and that's when she started acting more like a senile (the word we used in those days) old lady and being withdrawn at family gatherings. I know those times when my ears are congested from allergies or colds, I feel kind of "out of it" myself. So anything that helps the person hear better would be worth a try

But, all the problems in dementia and manual dexterity and visual impairments make using regular hearing aids SO difficult. Forgetting to put them in, forgetting how to adjust them, forgetting to change the batteries and thinking they just don't work, getting background sounds magnified to the point of irritation and confusion, and just plain losing them.

My mom lost two different sets of hearing aids in two years time. Then I heard about a new kind called, "Lyric" that solves all those problems. They go in the ear and stay there for up to three months. Once they're in, you can't even feel them, and no one can see them. They fit so close to the eardrum that there is no distortion, no feedback whistles, and the sound quality is much closer to the persons former natural hearing. No adjusting, no replacing batteries, no problems in noisy environments, no problems hearing on the phone, and they're too far in for you to take them out by yourself. They say that you even forget you have them on. Then, after three months you go back to the doctor and he removes them and puts new ones in. I took my mom to get them but they were so new they only made them in one size at that time, which was too big for her ears and it hurt, so we didn't get them. I checked periodically for a few years to see if they had more sizes, but not yet. Now, several years later, They probably have more sizes, but mom's dementia is so severe now that I don't think it would help, and she certainly wouldn't even be able to participate in or cooperate with the testing and fitting process. But, if your loved one's dementia is mild or moderate, I would definitely check this one out. I don't know anything about cost or coverage, but I think it would be worth looking into.

I was intrigued with the Lyric idea. I have seen them advertised on TV. But then the "yeah, buts" came in. My mother has a habit of blaming symptoms on things that have changed around her. For example, a bladder infection was caused by someone scraping and painting the kitchen. Feeling cold this winter was because we had new floor supports added in the house. I have a fear that if we put the Lyric in, she would develop some symptom and blame it on the hearing aids and insist they be removed. Sigh... it is hard to know what to do with a difficult personality. Still... it is definitely something to consider. What if they worked? That would be wonderful. Maybe it is worth a try. (I just wish things weren't so expensive, so if it doesn't work it wouldn't be much money OOP.)

JessieBelle, maybe wait a while and try again. Sometimes refusals are not as strong as they sound, just a product of the current mood or whim. My mom's reasons for denying something are often so random, they are just the reaction of the moment, and the next time I ask, I get a different answer. She doesn't even remember that I asked before, so she doesn't see it as me pestering her. When she used to take her pills on her own (now I crush them up and mix them in her yogurt and spoon feed it to her because she was having too much trouble with swallowing them) I would put them in a little bowl and put it on the table in front of her and say here's your pills, mom. On many occasions she would say, "No! I don't want them!". I used to get so aggravated, partly by her attitude, and I'd try to reason with her about how she really needs to take them, she'll get sick if she doesn't, etc. etc. Then one day I just took a deep breath, said, Ok, and took them away. A few minutes later, brought them back, said, here's your pills, mom (no hint that I had just tried to give them to her already), and she said, Oh, thank you, that's so nice of you!"

When she has a doctor appointment, if I tell her before we get in the car, she will refuse to go. So, I just get her ready to go and somewhere on the way when she asks where we're going, I say, "Your doctor appointment." and she just says, "Oh, ok." If she asks before we get in the car I just mumble something or say, you'll see, or change the subject. (I got the inspiration from my childhood. I remembered that one day, mom said, "C'mon kids, get in the car." and we didn't think to ask where we were going until we were halfway there. When we asked, she told us to the doctor. Loud wails and, "Are we going to get a shot?!!" and, "Why didn't you tell us before?" and she said, "Why let you guys get so worried and upset before now?" And we accepted that answer, it was kind of a relief to know she had spared us days of anxiety and dread.)

Anyway, my point was, Maybe if you can just get her to the audiologist and she hears about it from them, she will be more open to giving it a try. if you can get your mom into the car without having to tell her where you are going, or if you can avoid telling her directly (say, "There's something I want you to see" like it's an adventure) and just get her there. Explain the situation to the audiologist's office beforehand, and I would especially ask them to please not use the words, "Hearing Aids". If she has a reason for not wanting them, it's probably an automatic reaction- a negative association with the words "hearing aids" from years of hearing others complain about their hearing aids and all the problems that come with them, all problems that the Lyric aids have solved. I think they're so different they shouldn't even be called "hearing aids". Ask them to use a different term, like, "auditory enhancers". (When my mom was hospitalized and needed emergency gall bladder surgery, I asked everyone involved to not use the words, "operation" or "surgery", but to call it a "procedure". And she was perfectly fine with it until someone slipped and called it an "operation" and she started to freak out. I had to intervene, and say, "Oh, doctor, you just mean that "procedure", right?" and when he said, oh, yes, that procedure", she settled down. All three words mean the same thing, but "operation", or "surgery" carry so much more power to trigger fear. I have medical power of attorney, and if she HAD TO )

I looked up Lyric and read about them. I thought it might be worth a try, so located a local dealer. I talked to my mother about it and she said no, she didn't want any hearing aids. Okay... well that solves that until she changes her mind again.

It was so good to read about things from two different views -- both of them right, depending on the person.Thank you, yaya and kabeeena.

The other possible solution is something like earbuds or a head set connected to an amplifier, (look up personal sound amplifier) or one of those little clip-ons. You would probalby end up using it only when you were there trying to talk with her. I was never able to get my Mom's caregivers to help her with anything resembling a hearing aid and get myself off the hook for "mumbling" when I got tired of talking at 60 db or so :-) so we tried any number of things an audiologist suggested instead. She will likely not be able to manage them herself at all, that takes too much fine motor skills nad sequencing of too many things. You could tell her its a special device to remind all of you to talk louder. Or maybe "amplifier" won't sound as old-people-ish as "hearing aid.."

My mom has been wearing hearing aids for about 5 years now. She has Siemens, they were very expensive. She does use them but has to be watched because she has put them in with her teeth at night, LOL!! Sometimes she puts the batteries in upside down. It's a tough decision especially if you don't think she will wear them after she gets them. It is easier to have conversations with her even though she has Alzheimer's. Mom doesn't understand how to use the charger anymore so we just replace the batteries every week. Yes, she does forget where she puts them so you can plan on spending time searching for the aids and the batteries because chances are, they will not be together. Good luck getting to her go or whatever you decide to do.

Rats! I got cut off! Anyway, she HAD TO have the surgery. Why let her go into it feeling terrified because of the wording used?) Why let your mom miss out on a good thing because of a negative association with the words, "hearing aids"?

If she gets them and then starts blaming them for some symptom, just let her, and say, "oh, uh huh" or, "Gee, that's too bad" and change the subject. Don't try to reason with her about it. That reaction will probably fade over time, especially when the next thing to blame symptoms on comes along to replace it. In the meantime, she won't have hearing loss compounding her dementia. And that could make a huge difference!

My husband had hearing aids before he had dementia. I think that makes a difference. Continuing something is a whole lot different than learning something new. He would forget to put them in. When he couldn't hear me I'd point to my ear and he'd get the message to put them in. I did not shout or repeat myself.

Medicaid does cover hearing aids (but not expensive Lyric). I think they were replaced 3 times. Once he microwaved them (long story), and other times he just plain lost them. They were "insured" for replacement because he had dementia.

They really contributed to his quality of life. They do not, of course, help with comprehension. (During the initial test for a new fitting after dementia it was determined that his comprehension was reasonably intact.)

It is soooo hard to predict which devices will improve quality of life. Jessie I think you know your mother well. If she "got a bladder infection" from the kitchen being painted you can be certain she would "get the flu" from having an implanted hearing aid.