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She has gradually progressing dementia, and I count myself lucky that she's not hostile or really that difficult. But she can barely hear, or actually it's never clear whether she can hear but can't understand. I have to literally shout at her, loudly enunciating every. word. Eventually she seems to understand, but then 3 minutes later she's forgotten, and we have to go the whole routine again. I'm sure my shouting can be heard in the other exam rooms!


She's in very good health for being 92 with dementia, but she does occasionally need medical or dental care. Ethical doctors and dentists try to communicate directly with her, but it's just impossible - I try to explain that she cannot hear nor can she understand much of what's going on, so please just can you talk to me directly so we can get a move on and get out of there as quickly as possible.


I've asked a few providers if I can just come in without her, and of course that's not possible - I get it. But it's terrible, and having her there adds zero value to anything. The ride there, walking into the building, checking in at the front desk, the visit, and the ride back to her ALF is filled with What are we Doing, What is Going ON, I'm so Confused, Where are we Going.


So my questions of this helpful group are:


1. How do you deal with the every-3-minute repeated question of where are we going/what are we doing etc.?


2. How do you deal with the deafness+lack of comprehension = need to bellow?


3. How do you deal with health care provider visits in which the provider cannot effectively communicate with her?


I realize things could be much, much worse, but these visits wreck me for a day or so afterward. I don't have much emotional fortitude, I guess (I take after her that way).


Any ideas, tricks, tips, or thoughts from this wonderful hive mind will be much appreciated!

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I feel for you.

Communicating with people who are deaf is hard.* Communicating with people who have dementia is hard. Communicating with lay people on medical details is hard. The ethics of informed consent are hard. Repetitive questioning is incredibly hard on the nervous system (yours!).

So all in all...

1. Simple answers. "We are going to the doctor's office." Resist the urge to elaborate. Remember that your mother doesn't know she is repeating the question. For her, every time she asks is the first time. She won't think you're talking parrot-fashion.
2. Write it down, clear writing in an appointment's diary that you keep in your purse. Also 1. - simple spoken answers, and follow the rules for speaking to people who lip read/are hard of hearing - full face, wait until they're looking at you, speak at normal pace and without distorting the sounds.
3. Consider saying nothing until your mother refers the practitioner to you, or until the practitioner asks you for supplementary information. Vets and paediatricians have to manage; geriatricians and other physicians with large ratios of very elderly patients are only in the same boat as them.

* oh boy I'll get jumped on for this! I do not mean that deafness is the problem - I was thinking of deafness in older people who often do not realise they are hard of hearing and insist that you are mumbling.
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Kittybee Jan 13, 2020
Thank you, it is hard on the nervous system!

I really think the problem is she has both deafness and dementia, and they combine to make it exceedingly difficult to communicate with her. I make sure her hearing aids are not clogged. But when she says "WHAT?" it's difficult to tell if she didn't hear me or did hear, but didn't understand. So I end up shouting AND enunciating, and eventually she comprehends. For about 3 minutes. I'm liking the idea of flash cards a lot.

What are we doing? => Going to the doctor.
Why? => Skin exam. (Or whatever)
Etc.

Totally agree about simple answers. Figured that one out pretty quickly! Lol.

Thank you!
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I was gonna say the same thing as Cwillie. Maybe it’s time for a palliative approach & cut back on non-essential appointments. And try to have as much done at home—doctors, nurses, even dentists will come out to the house.
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Kittybee Jan 13, 2020
I definitely keep things to as much a minimum as possible. But sometimes it just can't be avoided. Right now it's a basal cell carcinoma on her face. First trip was the biopsy. Second (last Friday) was a consult. Next will be the lengthy Mohs procedure. I can't even imagine how that's going to go. I'm going to talk to her primary doc about all this.
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Oh sister, do I sympathize! I just went through getting my 93 year old mother through having a squamous cell cancer removed from her nose. It took 2 dr appointments to get it diagnosed, visit to the surgeon, then there will be 3 follow up visits. That's 6 visits. Now we are coping with her not remembering the care instructions. I wrote it all down but since she can’t wear her glasses she can’t read it!

I was figuring up all the medical visits I have to take her to in a year:
Annual physical
Lab for tests
Cardiologist
Dentist X2
Optometrist
Audiologist
Dermatologist
Allergist
Podiatrist X4

That's 12 times I have to get her out to the car, load up the walker, drive to the office, unload Mom and walker, navigate to the office, wait, into the exam room (always the room farthest from the door) wait again for dr, then repeat the trip back to the AL. Average trip is 2 hours by which time we are both exhausted.

her AL does have medical personnel who visit but not all of them take her insurance. Plus, I want to be there when she is examined and they don’t always have set schedules. And she is familiar with her regular practitioners and will Listen to their advice.

you have to wonder when it’s time to just stop the nonsense and leave them in peace.

As to how I deal with it, vodka.
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NeedHelpWithMom Jan 15, 2020
Hahaha,

Vodka, gin, wine, beer, whatever choice of poison that works! Love your style! Hugs!

Better make it a double!!! 🍸Vodka martini for you!
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I use the care team of doctors, PAs and nurses that come into my mother's ALF a couple of times a week. And the traveling lab people (for urine tests, blood tests, etc), the traveling dentist, the traveling x-ray team, etc etc. If they don't come into the ALF, mother doesn't use them. If she goes to the hospital, I will send an ambulance. If she needs to go to rehab, the non-emergent ambulance takes her there and then I hire a wheelchair van service to transport her back to Memory Care ALF where she lives. It's just impossible to do things any other way, so see what all you can sign her up for........that's part of the beauty of having her in an ALF!! The traveling medical team that comes by to visit.......it's honestly a LIFE SAVER!!! My mother is 75% deaf also and I have to yell at her for her to hear me. Then she asks why I'm HOLLERING at her. Then she forgets what she says mid-sentence, or what was said to her 2 minutes ago, or what the doctor told her, etc. etc. Yes, it's truly a nightmare and I would never take her out to the doctors anymore if I can possibly avoid it.

Last year, before she became wheelchair bound, she was having chronic vertigo. And I mean CHRONIC. It was horrendous, and the PT at the ALF was unable to help her using the Epley maneuver. So I had to take her to the ENT doctor who'd perform the maneuver. My husband would have to take time off from work, we'd have to load her into the wheelchair (she wasn't able to walk during a vertigo episode), drive her to the ENTs office, load her back into the wheelchair, get her into the office to be interviewed (which was a nightmare), and then ONTO the exam table, which was practically impossible. She has no core strength and could not sit up on the table. The doctor was almost unable to work on her, it was that bad. We had to take her there around 6x in a 6 month period. Once she became wheelchair bound, the vertigo stopped (thank GOD) so at least we have the ENT behind us, for the moment anyway.

Call the ED at the ALF and see what services you can sign mother up for. Like now. The mobile dentist, by the way, I only call when she needs a tooth pulled; I don't use them for cleanings or check ups or things like that. Because the only thing worse than getting her to the ENT is trying to get her to the dentist, which we've had to do about 10x since she's moved here in 2011. The mobile dentist is no more expensive than the regular dentist, but there IS a trip charge added on. Who cares, right? :)

The repeated questions: You just have to keep answering the questions, or try to DIVERT her by changing the topic. Turn the music up if you have access to music, and hope she starts listening to IT instead of trying to make small talk.

The healthcare provider doesn't have to communicate with our mothers; WE are there to do it FOR them. With dementia, there really is no other way.

How to deal with deafness/lack of comprehension: with continued prayers for patience. Sigh. I often lose my voice from having to 'holler' but she's not deaf! Only the OTHER residents in her Memory Care ALF are deaf! No use in suggesting a hearing aid; she either doesn't 'need one' or will lose it.

Good luck!!
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Kittybee Jan 13, 2020
Wow, you have a lot to deal with! And a lot of fortitude to keep your sanity through it all.

I don't think they have many mobile services, certainly not a dentist. I had to take her to the local Walgreen's for her Shingrix vaccine (I got one too at the same time, so that was good), but they do give flu shots on site. It's not always been clear what they do and don't do, and who does what around there. I think I haven't been asking the right questions maybe.
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See if your mom might qualify for hospice. Then you can skip the doctor visits. A nurse will come once or twice e a week and get directions from the hospice doctor. If your mom gets sick, no ER visit...hospice comes.
My mom has severe aortic stenosis so she qualified and it has really made life so much easier for her and for me.
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Kittybee Jan 15, 2020
Yeah, someone else suggested this too. It might be a very good solution, since I'm not a super-capable caregiver myself...
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Kittybee, just saw your comment regarding the basal cell biopsy and upcoming MOHS. My Mom went through a similar facial biopsy. I probably would have done nothing except she kept picking at a little mole, so it never looked “healed” Luckily we know the dermatologist well and I was able to take a picture of the sore on her face and email it to the doctor, who diagnosed it as basal right from the picture. I took her in the transport van for the biopsy (all the same nonstop questions as your mom) and asked them to take as big a biopsy as they could, with the hopes of them getting it all in one swipe. They took a huge sample, but unfortunately didn’t get it all, so I got the same lecture as you...”it’s slow growing but could kill her etc etc”. So I struggled with whether to put her (me) through the ordeal. I spoke to her NP at the NH, who looked at me like I was crazy. “Jean, She’s 93. She is NOT going to die of basal cell! I’m surprised you even did the biopsy!” Sooo, I opted out. No further consult...I just called them and said no. The biopsy incision healed, and that was the end of it. And she didn’t die of basal cell. Please think about if it’s worth putting her through it.
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Kittybee Jan 15, 2020
That's really helpful, thanks. I really am reconsidering it, but do want to chat with her doc about it. Not that I'd necessarily do exactly what he tells me to, but I just want his input...
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Given her age and dementia I wonder if the appointments are really necessary, IMO anything that isn't treating an acute symptom isn't.
Toothache/bleeding gums/tooth loss - yes. Regular dental cleaning and check up - no.
Problematic pain, fever or some other alarming new symptom - yes. Pretty much anything else - not gonna happen.
Ask if there is any way to access a visiting nurse for simple, regular wellness checks.



Have you tried anything like the pocket talker for her hearing?
https://www.agingcare.com/products/pocketalker-amplifier-434674.htm
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Geaton777 Jan 12, 2020
That's a pretty cool thing! Thanks for the link!
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I have found myself having a perfect conversation with my 97 yo aunt on the phone. No problems. Then, a certain word. She says "What?" like she didn't hear it. I say it louder. No response. Mind you we were just having a perfect conversation just before. Then I resort to spelling it. Then she gets it. It may be that some of your mom's issues is more than just bad hearing. I don't have a solution for you, but if she is continuously asking the same question, write the answer on a small white board or paper and if she keeps asking, just keep pointing to the paper. And if you're driving this works well, too. You can even write it in advance if you are pretty sure of what she'll be asking. Also use the white board to communicate to her, if she can still read. And I say *if* because last time we visited my MIL she had forgotten how to write. She could still read, just couldn't even sign her own name. Dementia makes everything a moving target, and on-the-fly problem-solving is the modus operandi. That's the beauty of this forum...lots of problem solvers ready and waiting. Blessings!
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Kittybee Jan 13, 2020
Thank you! She does still have reading comprehension - it seems better than her hearing comprehension. I'll try the piece of paper trick next time we have to go through this!
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Kitty,

I swear I was losing my mind dealing with my mom not wearing her hearing aid. One ear could not be helped by a hearing aid.

I had to yell and as you say, speak very slowly too. Do you know why? I detected that she was reading my lips. If I turned my head she would ask me to face her.

Another issue, wax buildup! My mom has a wad of wax removed in her audiologists office almost the circumference of a dime. I swear! I was shocked how much wax was removed. Hearing aids must be cleaned often for wax removal, at least once a week.

I almost bought a cordless microphone so I wouldn’t have to scream. It takes so much energy to yell like that. It wore me out.
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Kittybee Jan 15, 2020
It IS very tiring to bellow at someone. I think my mom tries to lip read too. But the ear wax idea seems to be a popular one, so I'll ask about getting it done. It might mean another office visit ordeal, but if debrox would work for her, maybe they can do it on site.
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My 94 year mother has dementia along with hearing loss which seems to have gotten a lot worse lately. It does complicate things when there is a comprehension problem too. I was feeling frustrated having to shout to communicate when a friend who taught deaf and hard of hearing students recommended I try talking through a paper towel roll. Wow what a help! We could actually communicate a lot better. Hope this helps 😊
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NeedHelpWithMom Jan 15, 2020
That’s interesting...

I know that my mom was lip reading so it would not have worked for me. Still, worth a shot for those it may help.
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