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!
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.
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!
Do you sometimes forget things?=No Never
Do you wear glasses? =No...bifocals hanging around her neck
What year is it? =2007
Where do you live? = In Arizona..Florida is the answer
Who is the President = No response
And more, it was making me very nervous to sit there for 11/2 hours and keep my mouth shut. She just sits there and stares out into space.
Well, anyway we have an appointment with an Imaging service next week to do
an MRI and other testing.
So far the doctors are sharing everything regarding her husband and her with my brother and I, this certainly helps.
I am following this as I need some direction too!
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
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!!
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.
As for having to repeat yourself over and over again. I'm the kind of person that if you tell me something once, that's enough. Thus I hate repeating myself. I've had to get used to repeating the same things over and over and over again every single day. Like kids, my elderly love to ask why? Then I have to explain it to them. Not just once, but 10 times in a row. Then I have to do it all again the next time. Multiple times a day. Every day. For years. So far. If I think of it, it drives me insane. So I don't think of it. I kind of do it on autopilot now. You get used to it.
I did not tell Mom we were going to the doctor till we got there.
I dealt with the doctors. They would ask her questions but in the end, I dealt with them. They were all aware of Moms Dementia because they saw it.
Repeated questions, you try to redirect.
I cut back on Moms dr visits, once the labs were good.
My dad has some comprehension problems and my mother is one of those types that REFUSE to wear the $4,000 hearing aids we got her (at her request!) so that we end up having to holler to be heard. It drives me nuts. Between the two of them, it’s enough to make me want to scream sometimes. It’s nowhere near the severity of what you’re describing, so I can imagine I’d be a pissed off, aggravated monster in your case!
I found that I was ALWAYS getting annoyed and irritable, even when they didn’t do anything that deserved my general grumpiness. They didn’t deserve that treatment but more importantly, I could not exist in that state. It’s unsustainable.
After much thought, this has been my solution; I remind myself (like, 20 times per hour when I’m with them) that I asked, “But why?? WHY? And why?” and must have asked dumb questions 200 times per day when I was three-years-old, too. Admittedly, children are a tad cuter than our elderly parents, but this is payback. At home, I’ll answer as much as I can. But out of the house, especially when in the waiting room, I write things on my phone and show her. She can type her question to me or will say it out loud, and then I type back my answers, explaining I can’t shout here. That is, assuming your mom can still read and comprehend what she reads?
I still get annoyed that my mother can’t be troubled to be ”uncomfortable” with her hearing aid so as to make the rest of us comfortable and not having to scream. But it is what it is.
Hang in there. I wish I could help you!
But when I'm not exercising extreme self control, if I'm a little distracted, I can snap at her, then I feel like a horrible monster. Especially because whenever we have difficult ordeals like this, afterward she always thanks me. It makes me cry - to be so frustrated and impatient with her, and then have her thank me for my help. I wish I could be like some of the posters on this forum who sound like absolute angels of grace and loving patience. I'm...not.
I remembered reading that emotional "tone" is still intact even when comprehension declines. So this last time, when she got dramatic and agitated, I told her, mom, as long as I'm here, you're safe. You can always trust me, even if you don't know what's going on.
That kept the questions at bay for 8 minutes, instead of the usual 3. So I may be on to something!
With your mom, could you just use notes, and explain to her that you can no longer scream at her, especially because she does have hearing aids. From now on you will communicate with her in writing. Would that have an effect?
And as a hearing aid wearer myself, it does take some time to adjust to them - but you never will if you don't use them for a period of time each day. Would she be willing to wear them for slowly increasing amounts of time each day? Or would that require too much micromanagement from you?
1. encourage use of hearing aids for that reason. After a seminar on topic she went directly to her room and put hearing aids in. By the next day - the knowledge learned or the fear of never hearing was gone.
2. applies to walking. Advised to use walker now otherwise the brain will
forget how to use walker. They will be confined to bed/wheelchair.
3. some assisted living facilities have physicians and dental and foot doctors on site.
4. all these “help” for a short while. Today is In house physician appointment. I need my car, they have me locked in. When is my appointment? I need the address. How will I find it? I need a shower. I don’t have keys, so after a face to face reminder I will be accompanying you to doctor. A note with instructions and map of the third floor doctor office. And no less than 10 phone panic phone calls.
I now take what I learn here. I say I’m grateful because it helps for awhile. I then Surrender! 😊
It’s always Two steps forward....
WE my husband and I have to repeat ourselves over and over again because she forgets within 3 minutes or less what we just told her. yes, short simple answers best. She refuses to go to the dr, and needs to get her wellness checkup so her son whos my jhusband will have to put her stern demanding hat on and make her understand. she wont listen to me. She says she doesn't like the dr, well so sad too bad, our previous dr. moved to Pennsylvania to take care of er mother, so she does not like change and this dr does not pamper her and
dote on her.. and the fact that dr agrees with what I say and MIL does not like that, so its a constant battle. before she goes I am going to make sure to tell dr not to say her name just go in and treat her..if MIL cant remember name she wont even know its the same dr that she doesn't like... I don't and wont go thru the process of finding new dr for her, and so she is just going to have to deal with it..never thought I would ever be in this position as a DIL, but I am. I just deal with it one day at a time..the best I can with a good dose of prayer and support from my husband. I wish we did not live with her but it is what it is..
I am not trying to be facetious, my step dad died of Metastasized cancer a year ago. He was in the beginning stages of dementia. He had a peaceful death.
My Dad is almost 91. He has had many skin cancers removed over the years, various types. More recently he has used a Chemotherapy drug in a cream that he applies to the places he can reach. It has been used successfully on his nose, the back of his hands and his arms. He has the ones he cannot reach either frozen or surgically removed. Dad does not have dementia.
But now I just don't know.
She's in pretty good health for her age, just "frail" (almost no muscle tone because she doesn't do anything). If she was experiencing organ failure or a number of other difficult conditions, I think this would be fairly straightforward. But she's not.
Anyway, my next step is to talk to her primary care guy and see what he thinks. Deciding not to remove the bump is not something most doctors would directly recommend, but he might help with insight about his experiences with these cases.
Write out what you want the doctor to know in some detail. They generally ask pretty much the same questions. Why are you here? How long have you had the problem? How does the problem affect you? What have you tried so far? How did that work?
Even though he can ask you all those questions out loud you can speed things up by having that already written and thought out. Plus you can write this out without mom interrupting you asking what and where and why.
Make at least two copies. Give mom one to read as well as the doctor.
Also try giving your mom half an anxiety tablet on dr days so she can be a bit calmer for the trip. Start with a half and see if it helps. Worth a try.
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.
My mom has severe aortic stenosis so she qualified and it has really made life so much easier for her and for me.
Most doctors are never, ever going to tell you to bring your mother into the office less frequently. There is no financial incentive for them to do that when Medicare always pays.
My mother has a doctor that comes to her at her ALF so you may see if you can find one. He's terrible which even she acknowledges (she was an RN) but I cannot get her out at all except as needed to the ER as she is bedridden. Sometimes I have to get the facility's nurse to talk to him to get him to do the right thing, but we work with what we have. It at least eliminates the drama of transport and waiting.
When mom is in the hospital, I do have medical power of attorney but don't really have to use it but if you have it you could start out with - I have medical poa please speak with me. I let them talk to mom which takes some patience because she will sometimes not tell them something important or just want to chat, but then I talk to them. Most providers are thrilled to just talk to me. I'm no nonsense and to the point. Raised by a nurse and being a mom and a caregiver, I'm pretty savvy medically and I have my questions and suggestions ready and don't waste time - most docs love that. My mom is cognitively fine but she prefers to just delegate to me. She's pretty well trained/consistent in it - if a doctor comes when I'm not there she will point to my phone number on the whiteboard and say "call her she handles everything for me". Which is oh so true! In addition to the ear cleaning, I've learned to cut her hair, give her pedicures, and much much more...
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.
Consider asking her PCP if she can be put on hospice care. That way the doctor/nurse comes to her at home, and she isn't subjected to the endless distress of being put in the car, taken out, and hollered at.
You aren't required to die within a certain period of time with hospice, so ask about it. It might actually be the solution to your problems.
Obvious question as well, but -- does she have hearing aids? Has she been checked for wax in her ears, too? My mother is pretty deaf, but boy, her ears get all sorts of stuff in them, and when the doctor cleans them out, she can hear 100 times better with her hearing aids.
Yes, she does have hearing aids. She may have wax in her ears too, I'll ask the doc to check. But I do think it's something cognitive as well.
Thank you so much for the info!
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.
Vodka, gin, wine, beer, whatever choice of poison that works! Love your style! Hugs!
Better make it a double!!! 🍸Vodka martini for you!
I just figure out one short sentence as an answer and use that one sentence over and over.
Anyways, one of many times she was hospitalized thru the years (hospital as well as rehab) - I would bring the hearing aids home with me. Those things were mighty expensive to replace. I had made several hand written signs ~ “Gran is hard of hearing...but her eye sight is perfect ~ write down what you want to say to her and let her verbally respond to what you tell her. If there’s any concerns that she can’t answer... call my cell phone.” I’ve lost count of how many times I’d visit her, to see notes from the doctors/other staff left for me... “Thank you for your input ~ your problem solving skills are top notch... it’s very easy to communicate via writing to your grandmom, she’s a pleasure to visit.”
I know writing everything out does take time... but maybe it could be of some help. Also, if your mom wears hearing aids...check them for wax buildup regularly. Gran had hearing aids that went inside of the ear ~ had to clean the wax off of them weekly.
Where are we going/what are we doing? Hold her hand, look into her eyes, and say simply "We're going to take care of you." The emotion from the touch and eye contact will normally be enough, even if your mom doesn't understand or hear the words.
As far as the healthcare provider... I found it best with my mom to just have them talk to me and I would "translate" for my mom using the above techniques.
Thanks!