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How much do you tell your LO
JuliaK
Posted: Friday, November 8, 2019 12:32 PM
Joined: 11/7/2019
Posts: 2


My mother was recently diagnosed with dementia and we are still processing what that means, even though we have seen symptoms and suspected something was wrong for years. The doctor didn't tell us a stage at our appointment (we had SO much to talk about with so many things going on with her health). Reading over things, I would GUESS that she is crossing over from mild to moderate. Probably more moderate. 

Memory loss has always been her greatest fear about aging. No one in her family has had dementia (my guess is that it in her case some radiation she had in her brain as part of her cancer treatment played a huge role. Certainly not genetics). So she has no experiences or points of reference to process what is happening to her. 

So, my question is: How much do you tell your LO about their diagnosis?

It has certainly helped the rest of us have a diagnosis and to say everything out loud so that we know the monster we are dealing with (the monster being the dementia. Not my mother. Though she can get cranky sometimes). But what is the loving and helpful way to approach this with my mother? She knows she forget things. She was there the first time the doctor said the word, dementia, but she doesn't remember the appointment at all now. Is it helpful at all for her to know so that we can explain WHY we don't want her in charge of her medications, for example? Or is it kinder to find other explanations. We told her she couldn't drive because she has a torn rotator cuff, so she has limited mobility in her arm. The arm injury part is true, but that's not the main reason she isn't driving. But she accepts the not driving thing because the arm injury is obvious. We would have a much bigger fight if we told her it was because of the dementia. 

Any thoughts?


althomas
Posted: Friday, November 8, 2019 12:51 PM
Joined: 9/11/2017
Posts: 20


Don't mention dementia unless she happens to bring it up. Just tell her that it is doctor's orders that someone be in charge of her medication. Tell her that her doctor wants someone other than the patient to have written documentation on her medication and schedule. Telling white lies to your LO to keep them calm and safe is something you will probably have to get use to. Also, every person is different and every day becomes different, so what works for one person might not work for your LO and what worked yesterday might not work today. I describe this disease like a roller coaster, you have your highs and lows, twists and turns, and you can't get off until the ride stops. If you have access to YouTube, please check out Teepa Snow, she has helped me a lot over the last 3 years. Our mom has Alzheimer's and she knew before the diagnosis because her dad had it.
Army_Vet60
Posted: Friday, November 8, 2019 12:58 PM
Joined: 6/21/2019
Posts: 454


Did the doctor withhold the diagnosis from your mother???  Informing the patient themselves is THEIR job.

If so, I would suggest you ask the doctor why s/he didn't inform your mother before you take it upon yourself to tell your mother.  

I was present with my wife when the doctor broke the news to us, together.

The doctor told her what she had and what medication she recommended be taken.

My wife was in early mid-stage ALZ and understood what the doctor said. She understood why she had to take the medicine. She understood why we would have to continue visiting that doctor.

 

 


SunnyBeBe
Posted: Friday, November 8, 2019 1:31 PM
Joined: 10/9/2014
Posts: 749


To me, it's a personal decision about how things are explained. In the end, though, the LO is not going to remember what was told to them about a diagnosis.

 I worried about upsetting  my LO when she was diagnosed, but, it turned out okay. Her primary told her that she could not live alone and needed AL as soon as possible. She wrote down significant Vascular Dementia on the paper, but, just told my LO that she needed help with medication, better diet, physical therapy, etc.  However, at the neurologist office, the neurologist told LO and I in the office that she had significant dementia, but, he wasn't sure why, without more tests.  My LO seemed to understand the word. When we went outside, she said that she was sad, because, she didn't want to lose her memories of her wonderful parents. I told her that she wouldn't, that she was cared for, she would be okay, everything was alright, etc.   (And, I was right for years. She would smile when I held their picture to her face and their names were the last ones she forgot.)

Only a few weeks after the neurologist told her she had dementia, she had completely forgotten and it never came up again. She didn't even understand why she had the MRI.   We focused on keeping her as content as possible.  Poor balance was the only thing she ever really complained about or seemed to be aware of.  

I suppose it depends on whether the PWD is able to process it and deal with the feelings and emotions.  I'm not sure what the benefits are. 


Joe C.
Posted: Friday, November 8, 2019 2:31 PM
Joined: 10/13/2019
Posts: 21


Julia, I believe Army_Vet is correct in that guidance is for physicians is the tell the patient the diagnosis. That being said, my personal experience is that is not always the best course of action. I took my DW to a neurologist after discussing her memory issues with her PCP. After the neurologist told my wife she had dementia and needed further testing she go EXTREMELY angry with me for taking her to the appointment. She literally did not talk to me for over a month, other than yes & no to direct questions. Also, I could not get her to go back for follow testing for 3 years. So we lost 3 years before we got an AD diagnosis and were able to get her on medication. I think you have to decide how the person is going to handle the diagnosis and is telling doing more harm than good.

 


star26
Posted: Friday, November 8, 2019 8:42 PM
Joined: 2/6/2018
Posts: 37


In my experience, it is more effective to make up other reasons for necessary changes. As you said, your Mom did not remember the diagnostic doctor’s appointment Also, some (maybe many?) people with dementia reach a point where they do not recognize their deficits and will deny them when told about them (especially if it has to do with giving up some independence). Since your Mom knows she forgets things you could try blaming memory problems when explaining “why” and see how it goes? I did blame “bad memory” a few times when conversing with my Dad about changes. I might not have if he had previously expressed a strong fear of memory problems as your Mom did. I didn’t want the word dementia used around my Dad and haven’t told him this outright because I don’t want to make him feel bad or upset and now I see that it serves no real purpose in our case: he won’t remember it and logical explanations are fruitless. He’ll never say “Oh, I have dementia? It’s probably not a good idea for me to be driving and handling my own medication and finances in that case.” Maybe that happens with some people, if so I’m jealous.  You mention “we” - I’m glad you’re not alone in this and hope you can get help from other family members in the days to come.
elruth
Posted: Friday, November 8, 2019 10:58 PM
Joined: 12/17/2016
Posts: 121


You wrote that the Dr did say dementia in front of your mother and she doesn't remember that. For that reason, I see no advantage in telling her the official name of the diagnosis.

I use the term memory problems when I give my DH his Namenda med. I never use the word dementia or Alzheimer's.


lizziepooh
Posted: Saturday, November 9, 2019 12:49 AM
Joined: 5/2/2019
Posts: 139


I think the answer lies in how will they take the news.

I read a statistic recently that said 80% of the people with dementia are unable to know anything is wrong them. That is an unbelievable number. Only 20% of the people that have dementia realize something is wrong with their cognitive function, the other 80% insist they are fine.

If your mom falls within the 20% I am sure she will be reassured to know someone that cares about her has her back. If your mom falls within the 80%, she will be hurt by you saying the truth.

This disease sucks. While it f*cks my life up more that my mom does not know she has dementia, I am glad she doesn't know she has this awful disease.

Knowing has to be especially scary and paralzying...every moment of every day. 

Just Awful!

This disease freaking sucks!


Rescue mom
Posted: Saturday, November 9, 2019 8:23 AM
Joined: 10/12/2018
Posts: 1092


My DH was told by the docs he had Alzheimer’s and significant brain atrophy. His response was “well, at least I don’t have a brain tumor.” He was pretty matter-of-fact about it, kind of joked like “I wasn’t just ignoring you, i really  did forget” whatever it was. (It was my understanding from docs they are compelled/required to inform patients of the Dx. I don’t know how true or widespread that is, but that’s IME with DH and other family elsewhere). I cannot imagine keeping that from him as long as he has any cognizance left. Maybe there were things he wanted to do or take care of... 

I hope he would have enough respect for me to do the same if situation reversed. If I found out someone had kept that a secret from me, I hope to haunt them for the rest of their days! But I know many see it differently, and different people have different reactions.

DH did not deny any problems, not argue the Dx, nor insist he was right when he was having a problem with something. He very readily turned over the finances, saying it was too much for him, so I could do it. Same for meds.  He admitted getting lost, so he stopped driving, thankfully, without a fight. Sometimes he’d make a joke about being smart enough to get me to do all the work. Ha ha.

We discussed his meds, legal paperwork, etc. BUT here’s the thing: in a few weeks, he forgot the whole process and tests. I will still say the Aword occasionally, and he has no reaction to it—not deny, not upset, nothing. I’m pretty sure he does not comprehend it now. Usually  I just say memory problems, although I do not avoid Alzheimer’s, it just not the easiest word.

Another poster here has talked about her spouse—who got an Alzheimer’s Dx fairly early age—was totally aware of it and became an activist/advocate for Alzheimer’s problems.

So....everybody’s different. We just have to figure out what works for us.

 


zauberflote
Posted: Saturday, November 9, 2019 10:14 AM
Joined: 10/24/2018
Posts: 475


Julia, you've had the whole range of possible answers. It sounds like you've hit on what works for you. 

For Mom, I have no idea if/when she was told her dx. I don't even know when it was given. Mom very readily asked my sister for help with finances (Mom wasn't mismanaging them grossly, but sis reported that there was an occasion Mom had double-paid her rent.) when Mom got too frustrated with keeping her checkbook balanced. She asked for help with laundry when her heart and knees could no longer negotiate the very steep, long flight of stairs down to the laundry room. Ditto asking for help cleaning the bathtub, turned into a mobility issue. She suddenly gave up driving at about 86 after a close encounter with the lip of the very derp railroad cutting behind her garage. So sis had to do driving. Soon enough sis said ENOUGH, and AL placement came to pass. Around about then brother and I took over, long distance, all care except a weekly drive-by and library drop off. So we saw Mom's checkout paperwork from dr office, and that was the first we saw a dx. Sis had not been going in to exam room with Mom, to give her privacy. 

So, for my mom, we definitely avoided "dementia" or any proper names. (And until I came on here, I had NO idea of the variety out there...). She once saw the building's sign, which is on a busy corner and prominently displays the word Alzheimer's. She turned to me with horror on her face and said frantically, "I don't have ALZHEIMER's, do I??!!!!"  Since her current dx is "dementia", I was able to fib, not that I know! The light turned green and we left that situation. By now, of course, I'm not sure it would be important to her. 


JuliaK
Posted: Tuesday, November 12, 2019 3:36 PM
Joined: 11/7/2019
Posts: 2


Thanks all for sharing your stories and what you do! My mom was present when the dr gave the diagnosis. Twice. But of course she forgot. Mostly I was wondering about in conversations like when she's mad because I'm gently reminding her to use her walker. Or why I need to be the one to sort her medications. Sometimes I think it would be easier for her to accept help if she understood her deficits. When she feels weak, she accepts it and then forgets. When she's feeling better she just gets angry. We (my Dad, husband and I) are still figuring it out as we go, but it's helpful to hear what others have gone through and their perspective. I've only used the term dementia with her during the conversation about moving into a retirement community. It nearly broke my heart to see her so scared. I backed off of that track and we looked at other reasons we felt they should make the move, which she did agree to and seems to have few regrets (we have NONE). Now I just say "You have some memory issues" or "Sometimes you forget things" if I need to say anything at all. And I'm learning to live with her being mad at me.
gubblebumm
Posted: Wednesday, November 13, 2019 10:12 AM
Joined: 7/12/2017
Posts: 1330


Just know that this isn't a "stopping" point, it will all shift again.  My mom "knew" her doctors told her, she tried to write down the words, she could no longer look stuff up on the computer.  So don't get too worried about doing it perfectly, and we are all at different places on the path.  My mom is at the place where this is her normal, I take her out, I get her food.

Everyone reacts a different way depending on where they are in the stages.  If I had figured it out a year before and did the testing etc probably would have been a different reaction from my mom.  She would have been much madder at me.  So happens when I did the appointments etc she was "further" along. everyweek is a new normal and best to just test the water first.  Now my mom, we just don't talk about it, why make her sadder than she already is


sunnydove
Posted: Friday, November 15, 2019 1:05 AM
Joined: 3/9/2018
Posts: 8


I never suggest to my mom that she has any kind of memory problems. It would be upsetting to her and would start an argument or make her distressed. So I try to frame everything under the guise of, "Mom, you took care of me when I was little and have been there for me my whole life. These are your golden years and you deserve to be spoiled and should just relax!" And when she says she doesn't need someone to be there to watch her I tell her it's not for her, it's for me because I feel guilty that she's alone and don't want her to be lonely. And again, I want her to live a life of ease as she's deserved it. She's far more receptive to help if she thinks it's a gift/reward for all she's done her whole life.
DianeChermak
Posted: Friday, November 15, 2019 9:55 AM
Joined: 11/15/2019
Posts: 2


I am in a similar situation.  I am brand new here so any advice would be greatly appreciated 

My Aunt has been diagnosed with dementia and the state has revoked her driving privileges as well as the psychiatrist and her family doctor have said she can not be alone and has to have 24 hour care.  

I’m rather quick fashion I was able to place her in a wonderful facility for a two week try it   She had a fit yelling and screaming she wasn’t staying there no one could make her etc.  I am her power of attorney so legally I placed her there.  To get her to calm down some we said it was only while I was in Europe.  The two week is over this coming Nov 22.  

She has actually done quite well interacting with others eating all her meals getting her hair done by the hairdresser etc.  however she has the sundowner syndrome and becomes agitated at night saying she is going home.  

The home suggests when I return next week that we tell her she is there for good.  She is only going to go berserk again. 

What should I do ?


Unforgiven
Posted: Friday, November 15, 2019 10:07 AM
Joined: 1/28/2013
Posts: 2607


I would say let the issue lie unless your aunt brings it up during a visit.  The forest fire is out, don't poke up the ashes into a blaze again.  Her facility is the ones who need their head examined, IMO.  Unless she is bugging them every day, which changes matters.

I'm a bit late to this thread, but I would say that how much information you give a LO depends on their personslity and their state of understanding.  I was always frank with my own mother, using terminology she could underdtand, but she was that sort to constantly question why things had to be the way thry were, and she was too smart to fall for a fib.  Only near the end did dementia become a sort of comfort word to her when she would ask me what was happening in her brain.  And then I would tell her not to worry because my brain was taking over for hers and she would be taken care of.  I promised to hold her memories for her and remind her of the good ones if she forgot.


DianeChermak
Posted: Friday, November 15, 2019 2:43 PM
Joined: 11/15/2019
Posts: 2


Thanks for the advice.  This is such a horrible disease
 
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