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apoe 4 - do I tell him?
Anonymous
Posted: Tuesday, January 17, 2012 5:41 PM
Originally posted by: Cathy J. M.

Doesn't the gene just indicate a level of risk? And help decide a treatment? Recently I read something in the Medications forum about how people with that gene do or do not respond to Axona. It seems to me like a technical issue that is more useful to the doctor and caregiver than to the patient.

Are you afraid to tell your husband his diagnosis? Is that the issue?
Anonymous
Posted: Tuesday, January 17, 2012 5:41 PM
Originally posted by: LCB

Yes, that is the issue.

The neurologist ordered the ApoE Genotype to be done based on LO's mental test results, behavior in his office, plus the referring physician's observations, plus LO's declining language, cognition, problem solving abilities, plus him getting lost while driving a truck to places he has been going for 25 years. APOE analysis prompted the lumbar puncture, and this is where I am not clear.

I've got 5 pages of CSF evaluations, and the one that is not clear is the tau a-beta 42 protein. Instead of a reference range it says "see ####", which is the ## of the apoe 4 report.

I'm upset with the doctor because of what I said elsewhere - they misplaced these results, then by the time they found them, the dr. had moved on to the next patient. I should be asking the doctor these questions - but can't. Besides, I would trust another wife's opinion more than the doctor about whether it harms them to be told. I want him to go fishing and ride his motorcycle while he can without worrying about it, but it is all over tv and he watches a lot of tv. He has not been fishing in 10 years, and has only ridden his bike one time - yesterday. But he talks about it all the time. And it is likely he will be sitting around with other ol' coots at Hardee's, and somebody will start talking about it. I want to be prepared.

Maybe this makes it clearer.
Internal Administrator
Posted: Tuesday, January 17, 2012 5:41 PM
Joined: 1/14/2015
Posts: 40463


Originally posted by: LCB

With so many newspaper articles now available about genes, and other articles on the Alz Research tab, I am wondering if I should print them out and leave them lying around, along with his report that clearly spells it out that he has the apoe 4.

I'm asking for advice. What sort of effect might it have on him?

Do your LO's know what is wrong with them?

I have been afraid for him to find out the truth.

All advice appreciated.
Anonymous
Posted: Tuesday, January 17, 2012 5:41 PM
Originally posted by: LCB

jfkoc, he isn't on any treatment. I think the neuro is waiting for the results of the sleep study. He mentioned exelon but then changed his mind.

It would seem that telling dh the truth might make him willing to cooperate with a treatment, if they ever come up with one.

He feels so terrible most of the time he isn't able to get out and do much. It breaks my heart.
Anonymous
Posted: Tuesday, January 17, 2012 5:41 PM
Originally posted by: LarryD

When my wife first suspected that she had something going wrong with her, she panicked and said she would rather be dead than lose her mind. She was not diagnosed at the time and I just tried to calm her down and we got her a vitamin B-12 shot for a couple of months and then she quit bringing it up and so did I.

We lived in denial for a couple of years as she started to lose more abilities but she was mostly mad that she couldn't drive any more and took a lot of it out on me. I received a lot of it as I thought about "what ifs". What if I had insisted on getting her tested earlier. What if I had made her do things that she used to do but I did for her now. What could I have done differently in the past that would have prevented or slowed down this beast that was invading our home.

As time went on she became unaware of what was wrong. She had moments where she would realize something wasn't right but the moments passed quickly and I was glad to let them pass with very little more than a hug, or a reminder that I loved her. I pasted signs around the house saying, "I love you:, and she drifted further and further into forgetfulness of who she was or who anyone was for that matter. That is the hardest for me to watch. She wakes up each morning and has little or no memory or awareness of who or where she is. As she wakes up more and more. she somehow adjusts and seems at peace with only occasional outbursts of speech, or laughing, or crying. Whatever pops up in her mind is expressed through noise from her mouth.

Every so often, she asks, "what's wrong with me" but I just hug her and remind her she's okay and I'm here for her and I'm not going anywhere. She takes comfort in my closeness and lets us do what we have to with her to keep her fed, clean, healthy, and comfortable.

I tried once or twice when I was frustrated, to tell her exactly what was going on with her mind but it didn't register or at least she forgot what I had said and the moment passed without consequence and now I am thankful.

We are in a routine now and each day is pretty much like the last. She might be able to get better care in a facility but I doubt it. I think our love has changed in the last few years from something that served my needs that she provided to something that serves her needs that I provide. How could I hand that off to someone else as long as I am physically, emotionally, and mentally able to provide it?

May each of you be blessed who are on this journey with a loved one,

LarryD
Anonymous
Posted: Tuesday, January 17, 2012 5:41 PM
Originally posted by: jfkoc

I do not see any reason to. Is it going to make a difference if he knows? Will it change treatment?

I would really wait.
Anonymous
Posted: Tuesday, January 17, 2012 5:41 PM
Originally posted by: Cathy J. M.

So your husband doesn't have a diagnosis? MCI? Alzheimer's? Just an assessment of current functioning plus the genetic risk factor?

One book I've been reading -- by an expert in cognitive rehab -- notes that reactions to having a disease like Alzheimer's range along a continuum from "I don't want to know about it at all" to "By golly, let's fight this thing and at least do what we can to help other patients." Yes, there are people at that last extreme, and they tend to do better than the ones who deny it.

My partner doesn't totally deny it but doesn't totally accept it either.

So are you saying that your husband talks "all the time" about his problems with memory and thinking? What you can do is rehearse in your own mind how to put this into a positive frame of reference:

1) No matter what, we're together and our love is stronger than any problem.

2) I love you no matter what and love you exactly as you are.

3) There are now excellent treatments for Alzheimer's (if that's the diagnosis) that help a lot, and we'll make sure you get the best.

4) Look at all you can still do! You're doing great and your memory is actually getting better. (OK, stretch the truth a bit as needed.)

5) There are some pluses too -- more creativity, more spontaneity. (Read John Zeisel's book, "I'm Still Here.")

6) We have a great life.

This is not an all or nothing situation. Take each problem as it comes -- such as getting lost -- and work on that to maximize his safety but also his quality of life.

Remember that functioning can improve as well as decline. Not only can medications help, but also diet, exercise, socializing, adapting the environment to changing abilities, and substituting new interesting and satisfying activities for what he can no longer do.
Anonymous
Posted: Tuesday, January 17, 2012 5:41 PM
Originally posted by: LCB

Cathy, the diagnosis I saw in writing was dementia. He talks about fishing and riding his bike all the time. He thinks nothing is wrong.
Anonymous
Posted: Tuesday, January 17, 2012 5:41 PM
Originally posted by: Starling

Should he know the diagnosis?

That depends on what stage he is in. My husband was in the room when the doctor said Vascular Dementia, but he was already so far along that having heard it did not matter. We never discussed it.

It is possible that he did understand and that was the reason for his early depression, but it is also just possible that he was depressed because he knew something was wrong but didn't understand what was wrong.

In the middle and late stages it doesn't matter if you want to talk about it or not. They won't have a clue about what you are saying. One of the things that makes caregiving so hard is that the caregiver starts to have to make major decisions like this one, right at the beginning. By the time there is a diagnosis, the patient can't help.
Anonymous
Posted: Tuesday, January 17, 2012 5:41 PM
Originally posted by: biccoastal

It sounds like your husband could get more information if he wanted it. Surely the doctor would tell him directly if he expressed an interest. My instinct would be to answer his questions honestly but not go out of my way to open the issue.

My husband has seen and heard the test results but somehow interprets them as mistaken or irrelevant. I tried explaining to him but he shrugs it off so now I let it go.
Anonymous
Posted: Tuesday, January 17, 2012 5:41 PM
Originally posted by: jfkoc

I still think you need to wait...the answer will come. Get more info.

I understand your wanting to share this with the one you usually first share problems with but this is different.
Anonymous
Posted: Tuesday, January 17, 2012 5:41 PM
Originally posted by: lurk

quote:
Originally posted by biccoastal:
It sounds like your husband could get more information if he wanted it. Surely the doctor would tell him directly if he expressed an interest. My instinct would be to answer his questions honestly but not go out of my way to open the issue.

My husband has seen and heard the test results but somehow interprets them as mistaken or irrelevant. I tried explaining to him but he shrugs it off so now I let it go.


This is our experience also. The other night he saw something on TV about Alzheimers and wondered if he had it, but was distracted before the conversation went anywhere. I thought that he may be beginning to be aware. In the meantime I tell people that we both have "old age", and sometimes I tell DH that he is a little further along than I am. It would be unkind of me to point it out. Of course he is being treated, which is so important.

I don't think you should tell him unless he asks. The jury seems still to be out on the total diagnosis. In the meantime, I hope that he can continue to do the things he enjoys; however, sometimes the things we enjoy become less important to us, disease or no disease.

This has all been so frustrating for you. You've been very patient; you should continue to be patient and not borrow trouble. You can deal with whatever comes up when it comes up.

I think that if his friends were discussing it, and he had sudden revelation, it would actually dawn on him gradually and he would approach you with his questions.

You could tell him as positively as possible, e.g., that you don't have all the answers yet, but that you will deal with it together. And throw in that together you need to do anything necessary to treat it so that he will agree to treatment. Best of luck to both.
Anonymous
Posted: Tuesday, January 17, 2012 5:41 PM
Originally posted by: jfkoc

LCB...forgot to answer...yes he has Parkinson's. The Neuro thinks he handles it well enough to avoid meds at this time. Some tremor and always walks to the left. Wierd, huh.
Anonymous
Posted: Tuesday, January 17, 2012 5:41 PM
Originally posted by: Cathy J. M.

Sleep apnea is indeed one of the things that can cause the same symptoms, so it makes sense to hold off.
Anonymous
Posted: Tuesday, January 17, 2012 5:41 PM
Originally posted by: kevinm

To LarryD,
Several things you said made a great impression on me as my husband has just bee put in an institution (by my step son) and I can't do the many things you are doing for your wife.
I'm very inspired by what you have said and wish he was back with me regardless of the daily routine, KevinMay
Anonymous
Posted: Tuesday, January 17, 2012 5:41 PM
Originally posted by: Cathy J. M.

quote:
Originally posted by LCB:
Cathy, the diagnosis I saw in writing was dementia. He talks about fishing and riding his bike all the time. He thinks nothing is wrong.


Dementia is more a symptom than a diagnosis. Did your husband get tested for all the things that can cause dementia other than incurable (but treatable) diseases such as Alzheimer's, Parkinson's, vascular dementia, LBD etc.? Even a thyroid imbalance can cause memory and cognition problems, as can a host of other things.

If everything else is ruled out, then the brain specialist tries to narrow the diagnosis down as well as possible in order to prescribe the best treatment and give you both a somewhat clearer idea of what to expect.

If your husband hasn't seen a brain specialist to get this far, that would be the next step and I think I'd play it down as more or less routine -- no need to alarm him when the "dementia" could have a curable cause.

The Alzheimer's Assn. says every patient has the right to know the diagnosis -- so if it comes to that, I'd keep that in mind but choose the time and place carefully. Some couples talk about it a lot and cry together and comfort each other. Sometimes the caregiver waits till he or she can take a positive attitude and talk about it in a reassuring way. Sometimes the caregiver never talks about it at all.
Anonymous
Posted: Tuesday, January 17, 2012 5:41 PM
Originally posted by: LCB

You are all right, in that there is no need to tell him today. If you read the "outa' nice" thread, you will see where he went fishing one day and rode his motorcycle the next. I am goofy with joy over these past two good days.

And yes, Cathy, I believe this neuro is a brain specialist from the approach he is taking. I will check the credentials to be sure.
 
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