Should my LO be told of his diagnosis?

archiesmom

On our first appointment with the neurologist after testing was done, we expected to be given a diagnosis.  The doctor walked into the exam room and said "I'm going to start you on some medication to help your memory."  No diagnosis.  No discussion of test results at all.

I thought that the diagnosis, whatever it was, would help us in organizing our affairs and planning.  But it has been the elephant in the room for almost a year.  Privately, the doctor has told me that she believes my husband's Alzheimer's is in its early stages.  In the meantime, I have been doing the organizing and planning.  This just feels wrong to me.  If it were me, no matter what was wrong with me, I would want to be told.  

I cannot predict his reaction to learning the diagnosis.  But there's something inside me that just keeps saying, "this is not fair to him.  He should know."  I've read other discussions on this topic and I can understand why the sharing of the diagnosis needs to be an individual decision.  Some people feel the need to protect their LOs from knowing they have this disease.  

My husband can rattle off the operations he's had and the diseases for which he takes medication.  He cannot fathom why medication for "memory problems" has been increased twice.  He thinks it must not be helping him.  The doctor is largely silent on the subject.  I understand that the decision is mine.  The trouble is, I feel as though I should ask him what to do.  That's how we've always handled difficult decisions. 

M1

Welcome to the forum.  I posted on a similar thread early this week:  it probably won't matter as much as you think, to tell him or not.  He likely will not remember, or will deny anything is wrong with him:  he may well have anosognosia, which is the inability to recognize that something is wrong.  I tell the story frequently that I went to our doc asking him to tell my partner she had dementia so that she would realize what was wrong and be willing to cooperate with me:  and the doc laughed at me.  There was no "aha" moment to be had.  That may be why the neurologist you saw didn't say anything; she's done this before.

I occasionally see spots on TV interviewing someone with early Alzheimer's, and I must say, I think they search long and hard to find those who can admit they have a problem and talk about it rationally.  Those are the exceptions rather than the rule, I think.   Most folks here in the forum don't have that experience.

Sorry that you have to be here, but glad you found this group; there is much collective experience and knowledge.  You are exactly right to just proceed on your own.  One of the hardest, saddest things about all this is that you can't consult your spouse on the decisions from here on out; most of us are used to making those decisions jointly, and now it just can't be that way.  You have to proceed to keep him safe and cared for.  Since this is a new diagnosis, get your legal affairs in order sooner rather than later, in case he needs to sign; thinking ahead about finances and potential need for long-term care is also important.  Certified elder law attorneys (CELA) can give the best advice about how to protect assets should you need to think about qualifying him for Medicaid in the future.

David J

My wife was seeing a neurologist for a movement disorder before any diagnosis of memory issues. As time went on, the movement specialist noted cognitive issues, as did her psychiatrist. The psychiatrist sent her for testing and was diagnosed with mild cognitive impairment, though she was still in the normal range on the tests. Some time later, the movement specialist advised us that DW had dementia of unknown origin. For weeks, DW kept asking me if I thought she was demented. She used the word demented, not dementia. To her, someone was calling her crazy. As with all problems that come with this disease, she eventually forgot. When we eventually got a diagnosis of Alzheimer’s, it made no impression on DW.  She was beyond understanding. She knows that something is wrong, and that she needs me to care for her. 

So should you tell him? It sounds like he won’t believe you anyway.  You are looking for his help with decisions, and he may already be unable to make rational choices. Your partner is becoming your responsibility. All that said, you are right to recognize this is a personal decision and whatever you decide will be best for you. 

JoseyWales

Here's our story - just one of many. But it might help you with your decision.
DH first noticed his memory problems and we searched for answers (he was in his late 40's). By the time we had a diagnosis, he could still talk about it and what it meant. He understood. But of course it was early in the disease. Knowing what it was helped him understand why he was having difficulties, and allowed him to quit his job. As the disease progressed he'd often ask what was the matter and want me to explain it. Knowing helped him.

Now, nearing 6 years later, he has no understanding of what Alzheimer's is or that he has it. He'd deny he has any problem. We no longer speak of it.

Lorita

Hi,

 When the doctor told us the diagnosis, Charles was in the room.  I don't know if he really comprehended what he said or meant.  From that time on we did not discuss it one time.  I saw no reason to dwell on the subject - no good would come from it.  There's nothing that could be done to stop it and I thought it would just make Charles worry more and feel bad about what could be coming. 

 You have to do what you think is right and how your husband would  handle the news but I would not tell him.  It worked all right for us and I think/hope it kept him from worrying.

Quilting brings calm

I really don’t  know if my Mom was told dementia when her issues first started. They were living out of state. We got involved when a move from RV to an apartment and an undiagnosed UTI sent her into overdrive.  She was beyond understanding then.  Once that got fixed, the doctors let a few months go by before we got a diagnosis of MCI.  We referred to it as having memory issues, A few months later that got changed to mild dementia.  She didn’t understand it then and she doesn’t understand it now.  The doctor has used the word dementia with her in the room. She ignores it. 

Your husband is probably right in that the medication isn’t helping improve his memory.  It’s  not going to, but it MAY slow down the progression.  Just tell him he is having memory issues and that the medication is meant to keep him at the level he is.  If he is capable  of understanding, he already  knows what ’ having memory issues’ means’.  

CStrope

Often times you can get more information out of the doctor's notes, if those are available through the on-line medical record system.  That is where I have been getting the majority of the specific details on my DH's Alzheimer's diagnosis.  While in the appointments,  I agree, the doctors do not really want to wave the Alzheimer's flag in front of the patient.  We had an MRI, with follow up discussion, then cognitive testing with follow up discussion, then PET scan with follow up discussion.  It wasn't until the PET scan appointment when the doctor finally mentioned Alzheimer's.  Then my DH turned to the doctor and said "so you think I have Alzheimer's?"   The doctor told him yes, and said but you're healthy and doing very well.  When we got to the car my DH turned to me and said "see, he said I'm doing really well, at least HE'S on my side".

So even if/when a doctor states an Alzheimer's diagnosis, it's very likely and possible your LO will not understand or accept it.  I have to admit that while under a lot of stress and fatigue, and in the midst of a battle over something like driving, I have said to my DH, "because you have Alzheimer's".  Not only does that not go well, but he doesn't believe it so it just makes the battle even worse. 

I too wanted to be able to have discussions about preferences he may have for decisions I'll have to make down the road, but I've had to accept the fact that those decisions will be solely my responsibility without his input.  It's a horrible horrible path to be on.  Like the saying goes, you're damned if you do and damned if you don't.  Trying to discuss a diagnosis with your LO may be of some benefit to you, but it usually only causes more problems with your LO.

dayn2nite2

What are you hoping will get better by telling him?  You say he doesn't understand the correlation between his disease and the raising of his "memory" medication (which is probably not working anyway).  What would change by telling him he has this disease?

Probably nothing.  You won't make anything better and would open yourself up to even more battles and useless conversations that you will have every.single.day.

Rescue mom

The doctor told me and DH together the diagnosis of Alzheimer’s. DH joked that at least he didn’t have brain cancer, and seemed very accepting. I would have told him regardless, at that point I thought he was better than he probably was, and I think people who have some semblance of cognition deserve, or are entitled, to know such a big thing about themselves. 

I had enough respect for his cognition to think he could handle at least knowing. Not that they can help or do anything, but at least they’ve been told. There was nothing to gain from him knowing, I just think a person deserves to know such a big thing about themselves, unless they are really incapable. I hope others would have enough respect for me, to tell me if the need arises.  No need to emphasize or repeat, just be told so they know if they can.

In hindsight I question if he really understood it. He forgot the whole thing in a few days, and I did not call it Alzheimer’s in conversation. If needed, I said “memory problems” which he readily admitted to having. He’d shrug off (and still does) whatever he forgot; it has never seemed to bother him. “Oh I forgot…(whatever)” and that is that.

Others handled it differently and that’s fine. It’s really whatever feels right for you. This is just our experience.

But I well remember how disappointed I was in the lack of further information and help from the medical people. I thought with a Dx, they could tell me more about what would happen and when. Now I know they can’t, and there’s very little, almost nothing, they can do.

Lorita

Rescue Mom - that's why this forum is so wonderful.  What we don't get from the doctors, we can get from the people who have lived through the experience.  I didn't know anything about it when Charles was diagnosed so came here and learned what to expect and how to handle it.  The people on this forum are so forthcoming with their information - everyone wants to help.

Ed1937

Archiesmom, welcome to the forum, but sorry you have to be here. This question comes up every so often. I firmly believe that it has to be an individual choice. There are pros and cons to consider. My wife was diagnosed 3 years ago, but she did not hear the diagnosis when it was given. I heard it, and I knew what it meant. 

We lost a son to suicide in 1998. She went into such a deep depression, that therapy was needed for years after his death. I just knew that if she knew of the diagnosis, she would be right back into a very deep depression. Nobody ever told her of her diagnosis, and I sleep well knowing that she does not have to deal with the depression again. 

Many people like Rescue mom feel that they have the right to know. There is nothing wrong with that outlook, and in some cases being told about it will give them time to let everyone know exactly what they want the rest of their lives to be. They can have input. We have been married for 63 years, and I know what she would want. 

She has refused memory medications from at least 4 different doctors, and I support her decision. After reading thousands of posts, I think there was only one where the author said memory medications absolutely helped, without question. Most will tell you that they think it might be helping, but they're not sure, and it doesn't hurt anything, so why not take it? But even if it does help, it only helps for a limited time, then loses effectiveness. But it will not do anything for the disease - only (maybe) the symptoms, and for a limited time.

So I don't think it is right or wrong to tell them. You know your husband best, and you will have to make the decision based on that.

Crushed

just to mention you need the diagnosis to apply for Social security disability !!

Paris20

From day one, my husband could not believe his diagnosis. It’s called anasognosia. It’s an inability to understand and accept that he has Alzheimer’s. He tells his neurologist at every visit that he disagrees with the doctor’s diagnosis. So, in my husband’s case, telling him or not telling him may be a moot point. My challenge is to keep him safe. He thinks he can still drive, handle our finances, and do home repairs. He has not been able to do any of those things for a couple of years. I guess my answer to the original question is that it may not matter in the long run whether he knows his diagnosis. Sooner or later the diagnosis will not be remembered. Just be sure you put everything in place, e.g. a new will, power of attorney, etc. before it’s too late.

1962ART

Thank you, thank you to everyone who took time to post.

I, too, get frustrated and want to strike out at DH not because of anything he did or said was unexpected, but I was just plain frustrated.

Sometimes we laugh and I say, "You know I am mad at your brain, not you.  I will always love YOU."  

I got push back from our daughter for even pursuing a diagnosis.  I knew, if nothing else, I had to know for my own peace of mind and to guide me in present and future decision making.  And, of course, as things change, the diagnosis changes, in DH's case.  Sometimes I meet with his doctors in private so I can review some changes in behavior.  My DH would be very mad at me if I ever said some of these things in front of the doctor while he was in the room.  You can also do this via email, if your doctor has a computer portal.

I think my daughter has come around.  Living with her gives me another party who can distract DH when he starts "spinning."  (Right now he is over concerned that our Chevrolet pick up doesn't have the same cruise control mechanism as the Toyota.  Me:  You're right.  They are not the same.  Get over it."  Him:  "but can it be added on?  Why doesn't it have it?  Do the new ones?"  I am having an aha moment as I type this that he is feeling insecure about driving and I need to ease him out of it.  We are selling our RV this summer because it is just too much for him.

Back to topic.  LO may or may not need to hear their diagnosis.  You may or may not need the diagnosis either.  Pick your path and know that you can adapt and change as you go.  Relatives may or may not benefit from knowing.  The right time and the right answer does not exist.  You'll do splendidly because you are on this site.

Arrowhead

Tell him. If he accepts the diagnosis, that will be an advantage. If he doesn't accept it, avoid mentioning it again.

CS 63

WWhen my DH, now 56, was first diagnosed with MCI 5 years ago we had lots of meaningful conversations as the prognosis was that he would stay the same, get better or get worse.  At the time we were happy for things to get better or stay the same, he was able to do lots although not as much as  before.  He was very open to discussion and future planning.  As things got worse  he still understood that his diagnosis was Alzheimer's Disease/dementia and we went to a memory clinic numerous times to see if he qualified for a drug trial.  He never got past the initial testing with his MMSE scores being too low.  This past January I reached out to our local health network to help with future planning and mentioned on the phone that he had dementia.  Later that day he asked me why I said that he had dementia, I said that it was because that's what he has.  He got very quiet and sad and said that he thought that he was just getting older like everyone else. That broke my heart.  Since then we refer to what's going on as the issues his brain is having with relaying messages and the medication he is taking is for his brain health and to help with the relaying of messages.  Last week we had to go to ER as he started having seizures.  I had to mention that he has dementia and I would be better at answering questions.  Of course he picked up on that and asked me the next day if having dementia meant he was stupid.  I'd give anything to be able to not have to tell people he has dementia to save him from the sadness.  So, to answer your question,  if you think he can handle it and it will lead to some meaningful and helpful conversations then go ahead.  If it will only lead to sadness then find another way to label it that works for both of you.