Am I handling it correctly?

Hal42

Approximately three years ago my wife was diagnosed with dementia. The neurologist even said “dementia” in front of my wife after his exam. On the way home (and at other times since then) she said “I don’t have dementia. I just have a memory problem.”  My wife and I don’t discuss her having dementia.  Sometimes while I’m on the phone with a doctor’s office I have to use the word dementia. She will later ask why I said that. I can tell she’s disgusted by the word. I just tell her it’s a medical term used by doctors to cover all different kinds of memory problems. She seems satisfied with that answer.

Am I handling it correctly?

Ed1937

Hello Hal. As long as she's really believing that, there should be no problem. Whatever works, works. But I think it would be better if you could have those discussions with the doctor behind closed doors. It sounds like that word upsets her, and if you could use that word without her knowing, that would be best.

nancyj194

Hal, I completely understand what you are saying about your DW not believing she has dementia. Early on my DH did not believe it and so I never talked about it in front of him. Well, just so you know, the only way I could do that was through e-mails or texting, as he always listens to every word I say.  There are no closed doors in this house and I no longer can leave him home for any appointments. The only respite I have is when our son takes  him fishing in the summer. That's such a short window, but I am happy to have three or so times for myself. 

Hal42

Ed and Nancy, thank you for your replies. Thanks in advance to others that may respond.

I called her neurologist’s office one day with a question and had to leave a voicemail. Her doctor replied via voicemail and suggested I use Follow My Health or My Chart.  I had problems trying to sign up for it so gave up. We have an appointment next month with the doctor so I’ll try a hand written note for the receptionist to give him when we arrive. I’ll ask my question and tell him of her discomfort with discussing dementia.  

David J

When we got the dx of dementia, DW went very quiet. On the 2 hour drive home, she repeatedly asked “do you think I’m demented”? “Am I crazy”?  It was very hard for both of us. I kept telling her that dementia didn’t mean crazy, it meant that her neurologic problems were affecting her memory and brain function; it is a physical illness, not mental illness. At that time she had enough function to intellectually understand, but not the emotional strength to accept it.

Paris20

Hal42, you’ll see the word anasognosia on this forum. It means that a person does not understand or accept his/her diagnosis. For the several years since my husband was diagnosed, he has consistently assumed he is fine. When his neurologist used the term Alzheimer’s, my husband said, «I disagree with you.»  During subsequent appointments, the same dialogue was repeated. The neurologist retired and we started going to a new one in the same practice. He hasn’t said the A-word in my husband’s presence.

Telephone calls are so tough. I cannot talk to friends or family or doctors about DH because he is constantly by my side and would go nuts if he heard me refer to his dementia. E-mails, texts, and patient portals are the only way I can communicate. Hal, 42, have someone walk you through using the doctor’s patient portal. If I can do it, anyone else can. Either someone in the office or someone who manages the portal should help you. Don’t be afraid to ask. When the only way to communicate with the doctor is via the internet, necessity is definitely the mother of invention.

Paris20

Sorry, double post

DrinaJGB

I have durable and medical POA for my DH and have found that communicating during a visit is not productive. I have done better with writing messages to his neurologist on the MY Chart site.

  That way my DH does not have to hear things being discussed about him. BTW--he always says he does not have dementia, either--and that he is "getting back after nearly being dead 11 years ago"; which to some extent is true.

  However, he still has severe brain damage from the viral infection he suffered- which in turn lead to significant damaged areas including orbitofrontal, bilateral temporal lobes, amygdala, hippocampus which lie in the temporal lobes.

  Interestingly, he also suffered from an extremely rare syndrome as a result of the areas damaged known as Kluver-Bucy Syndrome. Ah, yes---that in itself was a completely bizarre experience. I was never told this upon his discharge, but sadly had to experience it first hand. It was excrutiating.This syndrome itself often leads to dementia.

Ed1937

Paris20 wrote:

 Hal, 42, have someone walk you through using the doctor’s patient portal. If I can do it, anyone else can.

Agree. This could make your life much easier.

jfkoc

I am with Paris. If  I can do the portal so can you. ..lol. It is a good way to communicate and also to see lab/test results.

Iris L.

David J wrote:

When we got the dx of dementia, DW went very quiet. On the 2 hour drive home, she repeatedly asked “do you think I’m demented”? “Am I crazy”?  It was very hard for both of us. 

The word "dementia" is so fear-provoking!  I was told I had to accept that I had dementia by a geriatrician, and I fell into a deep depression lasting months.  Hearing the word did not change my memory and cognitive symptoms, but it did change my thoughts about myself.  It's better not to focus on fear-provoking words, but to focus on handling the many challenges, IMO.

Iris

Palmetto Peg

My DH has become very worried and depressed as well.  He won't use the word dementia, but instead tells me that he is becoming an idiot, which is probably worse.  I reassure him as best I can, and just call it mild memory problems, but I will definitely get word to the doctor that when we see him, he should not use the word dementia.  It reminds me of when my father was diagnosed with "emphysema" and the nurse said we have to call it COPD now because of the association with smoking and how people weren't sympathetic and thought smokers deserved to be sick.  Dementia brings to mind people in locked wards pacing and crying - and although some of our loved ones may deteriorate to that point, my DH certainly does not see himself like that yet.  Mild memory problems sounds much more benign - like the sweet old aunt portrayed in the movies who forgot where she put her glasses and everyone laughs because they are on her head.  Whatever helps our loved ones feel more secure is good with me!

Farm Gal

Hal, my husbands's neurologist called it Alzheimer's when he told  him the diagnosis.  DH could never remember what he had except that he would say 'he has memory problems because of his age'.

I have never brought up the diagnosis but the doctor does sometimes at the appointments.  With my husband it is better if we don't even talk about it.  As Ed said "whatever works works"

Stuck in the middle

Hal42 wrote:

I can tell she’s disgusted by the word. 

"Dementia" and "demented" are pejorative terms for a lot of people.  Since your wife is one who hears the word as an insult, I would call it something else.  Memory problems, CRS (can't remember stuff), or "losing my marbles" as my wife says are all fine so long as you both know what you mean and aren't offended.  

Idiot, imbecile, and moron used to be medically accepted diagnoses associated with specific IQ ranges.  

Emily 123

Hi Hal,

I had trouble too, signing up for 'My Chart' for my mom.  I ran into an issue with them telling me to sign up vs. when it was actually available for activation.  There should be an email address or phone number on the home page you can use to contact them,  or the doctor's office may be able to reset your account for you if you ask during your visit.  It really does make communication and prescription refills easier, so might be worth it.  It also lets you upload your documents like POAs, so that's handy.

Hal42

Many thanks to all of you!  Each of you have given me something to think about.

David, as you said about your wife, I feel the same about my wife.  She knows the word, just can’t accept it. Could I if things were reversed? 

Paris, anasognosia is one word I’m coming to think applies to my LO. Also “sundowners”. I think I’m the one not wanting to believe these terms apply to her. But the more I read on these forums the better educated I become. Tomorrow I’ll be contacting the MyChart site person to walk me through signing up. I tried this evening by myself but got befuddled. I did see an example of the chart and know it will be beneficial.

Drina, I am looking forward to using My Chart. I, too,  don’t like to talk about LO’s problems in front of her. 

Iris, I don’t use “dementia” around my wife. I think there were two times I used it in a phone conversation with a doctor’s office while in the living room with her.  Both times “Why did you say that?”  “Uh, because……..”(Fiblet added here).

Palmetto, I like your phrase “mild memory problems”. I’ll hang on to that one.

Farm Gal, I agree with you and Ed— what works, works! I’ll be pointing out to the doctor/s not mention the word dementia in front of my wife as it’s disturbing. Can’t wait to get on My Chart tomorrow.

Stuck, CRS is one I’ll try next time she gets befuddled. As for idiot, imbecile and moron, I worked with some of those folks. Especially when there was a full moon. I remember them well.  Lol

jfkok,  I’m following your advice and that of others about getting on board with MyChart. Sometimes things have to be pounded into my head before I’ll act. 

Thanks again to all of you and I’ll be  praying for all.   

Hal42

Hi Emily, yeah, My Chart said something about getting the Follow My Health app first. I had done that already and I saw nothing on there about My Chart. So a phone call to the rep tomorrow.

Maybe I’ll ask the four year old neighbor boy to get me signed up. 

Thanks for jumping in on this, Emily.   I appreciate it.