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KayBee58 Asked May 2014

How do you tell Mom (or ask Dr to tell Mom) that she has dementia?

She's only seen this dr once. I finally have the POA in place (just needs 2b notarized) which will allow me to speak 1-on-1 to the neurologist about all test results. She (dr) has already told me that Mom fits all the criteria for beginning of Alz or some form of dementia, but I haven't told Mom. Mom has been living w/me and agrees it's time to get her "own place," but I'm not sure (yet) what her options are, since we can't even start looking at facilities until we get the diagnosis, which will hopefully come next week. I'm just dreading it b/c she thinks she is doing FINE (most of the time) and my question is: HOW DO YOU TELL A DEMENTIA Pt THAT THEY HAVE DEMENTIA? Even tho' she drives me crazy most of the time, I am so concerned about her reaction and (selfishly) all the questions that will come once we get home. I have a great book, The 36-Hour Day, which has been so helpful and I'm sure there's a chapter on this topic, but I'm just asking for my fellow Caregivers to share their experiences regarding this crucial step. Blessings to you all!

kgr947 May 2016
My mom has dementia. Good days, bad days. She goes through cycles of picking her nose, messing with her eyes, etc. We just got her nose cleared up (picked til made a sore inside), now back to her eyes. We've had to have antibiotics for both eye and nose. We have to keep her eye covered to keep her out of it. My grandson, one of her caretakers, had to finally take her hand and move it from her eye, because she refused to stop. She is furious with him, calls him a bully. Does the same with all her caregivers, but gets most angry with him. She eventually forgets her anger, but acts out with him and me. The other caregivers are not family, and she is not so hostile with them. How do we deal with this?

twopupsmom May 2014
Kay if she has nothing, assets etc. she will qualify for Medicaid, at a certain point, but just placing her into a nursing home setting is pocket paid only, that means you have to come up with $5000 to $8000 a month to put her there, the same with assisted living, I would contact your states Office on Aging to see what she qualifies for. The only way even Medicare would cover her costs for up to 100 days is first she has to go to a hospital for an ailment, broken hip, etc. then be sent to a NH for rehab, then you apply for Medicaid to pick up the payments. Very time consuming, your best bet to settle her down a bit now is to get her Dr to put her on some meds to calm her, my husband has that added DX of psychosis also our Dr added a trace amount of an anti psychotic & it worked immediately. She does not sound like she can live by herself. Can't figure out the diagnosis holdup, and you don't need that to get the POA in motion, she is just turning all aspects of her life over to you to handle ( that may really screw you!)

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KayBee58 May 2014
Thanks, twopupsmom. It seems that everyone agrees w/you and, as I posted earlier, I wasn't thinking clearly (imagine *that*). It didn't even occur to me that I didn't have to tell her. We've just been going to so many dr's to get a diagnosis so that we can start looking at facilities. It's a Catch-22, tho'--as if all of you haven't figured that out yet. How do you know WHERE to apply for a room/facility if she's not deteriorated to NH status? She's ready to move out (or so she says)--only b/c we haven't begun the "tour" process. When I started calling all the Senior Living facilities in our area (approx 50), the first 5 told me that they didn't accept Medicaid; they're strictly private pay, so I was told to go the Medicaid route--which she will definitely qualify for due to her financial status (she has zip/nada/nothing)! Then they started telling me that she has to be medically qualified, which is what I'm in the process of doing. We've done all the neuro/psych/brain scans, etc; I have the POA ready to sign & notarize, and as soon as the neuro's office can squeeze us in, we'll get the diagnosis--which I've already been told is some form of dementia but here's the thing: her chart also shows a dx of "psychosis"--not sure if it's dementia-related?? So I'm not sure what type of facility will take her OR if Medicaid will cover anything. If not, I'm screwed, b/c I am her last resort. And, I'm NOT joking here, ONE of us is going into a hospital soon, b/c I cannot physically, mentally or emotionally do this much longer (she's only been living w/me for 9 mos but it feels much longer). I can barely function. I'm self-employed and usu work out of my home ofc, which I haven't been able to do since Jan. when she really started going downhill. B/c she has approx 80-90% hearing loss in 1 ear, I can hear her TV from across the house, even with ALL doors closed. There's only a bathroom between her BR and my home ofc. That's just ONE distraction... Thx for letting me vent again. I'm so sick of this emotional rollercoaster!!

twopupsmom May 2014
My husband would go ballistic when the A word was used, diagnosis went right over his head, he said to me they must be talking about you. As time went on it was best not to say Dementia nor Alzheimer's, no use causing a blow up, what is he going to do about it, really there is no need for him to know ( nor your Mother) you need to start working on unwinding yourself, it is what it is. When you say " her own place" are you saying putting her in a home?

KayBee58 May 2014
Nana2Nanny: That story ("good news, bad news") is hilarious and made me laugh for the 1st time today! By the way, I'm known as "Nanny" to most of the kids in my family. I never had kids, so all my nieces & nephews and my sisters' grandkids are my "surrogates." I love them so much, and they are all the bright light(s) in my world.
As for telling Mom, it just never occurred to me to NOT tell her... that just goes to show you how shut down my brain is these days. I'm usually very rational, but living with her 24/7 is just SO crazy-making. My oldest sister moved Mom in w/her a few years ago 'til she couldn't take it anymore. But that was BEFORE the diagnosis, and even tho' Mom has always been narcissistic, inappropriate and just plain spiteful, no one in the family has a clue as to what she is like today. So, if I say anything about Mom, my sis says, "Tell me about it! I know what you mean." I just wanna say, "No, you DON'T know what I mean." I don't even have the energy to tell her the specifics.
As for meds, she's on Zoloft now and I think it's helping, But, as CallMeCat said, even tho she forgots a lot of things, it's amazing how well she remembers things that "spark her ire." Bless you all!

jeannegibbs May 2014
KayBee58, I think there really is consistency about this issue. My mother's major coping mechanism is denial. That was true when she was 30 and when she was 70 and now that she is 90+. It would not have been good to tell her three years ago, or today, or next year.

My husband was a mechanical engineer. His life focus was on cause and effect. His world made more sense to him once he knew he had a disease with a name -- that all this weird stuff was not random. For his personality what would have best for him at age 30 was the same as it was in his 70s when he was diagnosed and all the 10 years he lived with dementia.

So what is right for Mother now may not change at all. If it does, or if you discover you made a mistake, you can change your approach. Do your best, and don't beat yourself up if your crystal ball isn't working perfectly.

Nana2Nanny May 2014
You don't. And from here on, don't expect rational conversation- lower expectations to ZERO. I know this isn't funny because I deal with it daily but I saw a joke one day and it spoke volumes- Grandma saw the doctor who told her he had good news and bad news. He asked which one she wanted first. She said give me the bad news. The doctor told her she has dementia. She asked "so what is the good news?" and he responded "you don't remember the bad news!" And she said "what bad news?" And he said "my lunch wasn't that good" " and she said "what's your name again?" Point made. Best of luck and many blessings to your family and mom!

JessieBelle May 2014
Most of our experiences sound alike. My mother wouldn't go to a geriatric specialist or neurologist the first 3 years I was here. I finally got her to one last year and she was diagnosed with significant cognitive impairment. The word dementia makes her mad, so if I say anything at all I find a less hated way of saying it. Strange she doesn't mind it when I call her cuckoo crazy. I guess she sees that as more endearing and not medical at all.

CallMeCat May 2014
Jeanne, I'm with you. My maternal grandmother had dementia, so it has always been my mom's worst fear. She started having memory issues shortly after her doctor put her on Zocor in the late 1990's. By the time my dad died in 2003, he told my brother he thought Mom might have Alzheimer's. By 2008 my siblings and I decided it was time to have her tested and get her on medication to slow down the progression. When I made the appointment for her cognition test, she was LIVID. She would forgot a lot of things, but it took a long time for her to let go of anything that sparked her ire. We explained that it was necessary to get on meds if she has it, which she finally understood when she calmed down. After the test, which resulted in a diagnosis of "Mild Cognitive Impairment which may or may not be Alzheimer's," they gave her a Rx for Aricept; and after that we never used the "A" or "D" words again around her. It was just a medication that helped with her memory. I made the mistake of leaving the Rx packaging with all the info stapled to it out where she found it a couple of times, and I got bombarded with "Alzheimer's? Who said I have Alzheimers?? I'm NOT crazy!" So I made sure to keep them out of sight. I figured she'll get the same treatment whether she knows she has it or not, so why upset her more than necessary?

KayBee58 May 2014
That's the catch--what's best for her TODAY may not be what's best for her TOMORROW!! Crazy-making stuff. The reason I'm putting the POA in place is so that I CAN discuss the specifics in her absence. She panicked the other day b/c she couldn't remember where this dr's office was or how we got there. I don't handle it well very often, but I was having a "good" day. I normally would've said, "What difference does it make? You don't have an appt, you don't have to drive there, etc etc!" Instead, I reminded her where the office was and she just said "OK" and calmly went back to her room. THANKS, EVERYONE, FOR YOUR INPUT!

jeannegibbs May 2014
Why would she have to be told? But here's a caution: if you decide not to tell her, make sure the doctor knows that, so the discussion can be about "memory issues" or some other term.

Some people do best with a diagnosis. It helps them to have a label for what is happening to them, that other people understand it, and that they can rely on others to keep them safe. Other people are better off not having to face that harsh word. (My husband was better off knowing. It would be cruel to tell my mother. There really are both kinds of people out there!)

Try to make the decision to tell or not to tell in your mother's best interest. It is tempting to do what would be most comfortable for you. Sometimes that is the same thing as what is best for your loved one. But if there is a conflict, suck it up and go with what Mother needs.

whippedat56 May 2014
I agree with Pam above...when I told my mother about her dementia she didn't believe it...and when I told her the dr said it she said I was in cohoots with him...I told her why would he lie, he's not a friend of mine, I'm not paying him to say it...your mom will no doubt not believe it either

pamstegma May 2014
How do you tell a drunk he is drunk? She will deny it, she will get angry, she will fire the MD if he uses the D word. My MIL insists everyone else at the ALF has dementia. She is tired of them repeating themselves. She is tired of having to tell the aides how to take care of her. We have told her she has dementia. She does not remember the conversation, nor does she want to. It does not get better, either. The nice thing about Dementia is that you don't know you have it. So don't bother trying to make her deal with it; she can't.

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