We're finally at the point where he will get some kind of evaluation. Do we have the dr. tell him (in our presence?) or do we go along pretending everything is Ok? And how strongly do you have to insist that they follow through with finding out just what will help them? My DH is completely unaware that there is anything wrong with him, but his daughter has an appt. with the dr. this week to decide just how to go about whatever should be done.
PrisR, we've spent a lot of time pretending things are ok even though the neurologist told my DH and I that the test showed brain damange that was consistent with alzheimers.
The children and I had worked for nearly 5 years to find out what was wrong..taking him for tests he didn't want, and etc. That few moments when he was TOLD, were stunning..He said very little. I THOUGHT, now that this is out on the table, we'll be able to plan and work together to 'fight it'. We had one serious discussion and the very next morning, I woke up thinking what a relief, we are on the same page with this.. but he woke up angry and refusing to see the doctor again. To this day, DH does not agree or admit that he has anything wrong.. So in a way, we are all still pretending..while things are progressing and he is blaming everyone and everything for the difficulties.
I've learned here, from so many, that every situation is similar but every situation somewhat different. I've come to try to understand that to pretend things are normal is probably better for our particular situation. If he was more cooperative and willing to help himself and us, it would be appropriate to discuss it and talk about things as they evolve. Maybe by staying in denial or by not be AWARE of his limitations that much, he is spared some of the harshness of KNOWING.
Even now with so much more advertising about AD on tV.. one would think..DH would connect that he's taking aricept and he's watching ads about the purpose for it. He never seems to notice. This is too longwinded but I will say the doctors have been very very GOOD about the way they've said some of these things to DH. The thing I feared was a blunt direct slam dunk of diagnosis.. instead it was a subtle easy and not all that conclusive statement but enough to let him know that no further 'testing was needed.
I sat and told Jim my fears before we began testing. He was terribly upset for a little while, then denial quickly set in. We went through the tests, hoping to discover what was behind his anxiety and depression. My Mom (our greatest supporter) and I were with him when the dr gave us the news of Dementia. At that point he had had neuro/psych eval, every blood test under the sun an EEG, and an MRI. The neuro then sent him for a contrast PET Scan, this confirmed FTD, FrontoTemporal Dementia. Again we were both with him. I think it is better to be honest. Jim is dealing fairly well with his deterioration with the help of many meds including paxil for depression and ativan for anxiety. Good luck and let me know how you do.
I did discuss it with my husband, he knew and understood that he had been diagnosed with AD but never really was out of denial about it. He looked in the mirror and thought he was the same as always. You know your husband best, do you want him to understand, know and accept the diagnosis for you or him? There are many things you can do to accomplish what has to be done without forcing him to constantly confront the diagnosis. It really comes down to what works best for him, you and your family.
Pris-my husband never would have accepted the fact that he had a problem. He did accept going to a doctor for "some help for his memory problems". Each person is differnt.
Jim is on the FTD website, giving support to other FTD patients and caregivers! I was shocked. Somedays he is very alert, and can do this, other days he just sleeps. He can still think and type, but speech and language are failing. I'm so proud of him.
I would suggest, if you are not current on your life insurance policy or you want to make changes do so before you get evaluated, once his is diagnosed you will not be able to get Life or Medical insurance.
We call it Memory Problems most of the time, or "AD". On occasion, (such as during The Alzheimer Project on HBO, he'll ask again... "Who has Alzheimer's...no one told ME about that.." I'll remind him and talk about it a little and then he'll forget again. There's no reason to harp on it. One doctor said, years ago, that it doesn't really matter what the "name" is..or "how many stitches they had to make to close a wound". Sufice to say, he's got a memory problem...and we go with that.
I say AD, and most of the caregivers I know here use the initials as well. WHEN it is absolutely necessary to refer to it by a name.
PrisR - my husband knows his diagnosis. I would never dream of not telling him. He has the family history so it is not unexpected - for the most part. January 2008 is when I told him he had a problem and had to find out the reason. It was last November when we got the AD diagnosis but went to a different neuro in January who diagnosed aMCI. He just went through neuropsych testing and is very aware of his short term memory problem. Fortunately other than some personality changes (more relaxed and joking) that seems to be the most area affected. He spends his days in the shop puttering around painting and repairing yard ornaments and such that my sister has. He cleaned all three air purifiers (ours and my sister's 2) with no problems remembering how to take apart and put back together. I still have not figured it out. That is something he only has been doing for the last 5 or 6 years.
Only you know how far along your husband is or if he will even accept it. But, I would tell him at the doctors office. You will have to accept all doctors visit you have to be there cause he won't remember what is said. He may even forget the diagnosis.
Today I asked my wife if she had any problem with me mentioning things I have learned from this website, using the term "Alzheimer Spouse website". This came up last night when we were having dinner with another couple and were discussing things I am doing. She said "NO". I think she is so far along that she does not really realize that I am talking about her.
My DH has known from the time of diagnosis. He has accepted it although says he gets very frustrated because he knows there is nothing that can be done about it. He and I discuss it - when he brings it up. And he will bring it up when other people are around. He doesn't hesitate to let them know he has AD and even tries to explain how he feels sometimes - that "fog" that envelopes him at times. He's very good at explaining it - but then will always say to me - "you don't know what it's like". And, truly, I don't know. Those are the times my heart breaks.
Several years ago, I saw a TV Special about a woman in her 40's who suffered from EOAD. All of her brothers and sisters had it as well. She described "how it felt" to simply going blank...as one does when one goes to sleep... with no awareness of anything for a period of time, and then she'd be back to herself again. The program showed her being aware of everything around her one day and then behaving as if she were Stage 6-7 the next with "The Look" of Alzheimer's in her face. It's a very mysterious disease. I tried to remember her in the eariier stages when my DH says "You didn't tell me that", understanding that it might have been we talked about it when he was in a black-out period.
DH's neurologist told us both together that he had early stage Alzheimer's. He accepted it and we talked about it and the future a lot. We discussed it with friends, and he even would joke about it, "Don't expcet me to know, I have Alzheimer's". We were able to "come to terms" with it as we went along. I think it helped both of us. Now he is mostly in stage 6 and doesn't know that he has AD and, in fact, has no idea what AD is. Now he will occassionally ask, what is wrong with me? and I'll tell him he just has a little memory problem.
Pris, I believe the term is anosognosia, when a part of the brain has been affected that doesn't allow them to have the awareness that something is wrong. Very different from denial, when the person has somewhat of an awareness of a problem, but is in denial.
I think each case is different as to whether to tell the spouse or not. It is a personal decision. I told my husband his brain had been damaged from the whole brain radiation he received, showed him some supporting literature. His response: There's nothing wrong with ME. Looking back, I wish I had never said anything, because there is nothing to be done, such as Aricept for Alzheimer's. I mistakenly thought if he understood, we could plan together. He remains unaware that anything is wrong.
If the spouse has an angry personality at this point in the disease process, I think perhaps it is better to skip it, because it might provoke him/her. If their memory is already very much affected, then what's the point, they probably won't remember.
Some couples have successfully worked together in the earlier stages from what I've read here. Only you can know how appropriate it is in your individual case.
DH knows he takes Exelot patch for 'his memory problems.' because I want him to take it. He still says he doesn't have anything wrong with his memory. He also takes Namenda for 'his memory problems,' ginko for the same reason and fish oil gelcaps to protect the memory. He thinks I'm pretty funny because I want him to take so many pills. But, he doesn't remember if he's taken his evening pills and just before he gets into bed he asks if I've given him his pills. I ask him every once in a while "do you know why you are taking these pills?" He says "No. I think I take them because you want me to take them."
I watches those commercials and doesn't make the connection. Sad, isn't it. We don't use the word Alzheimer's. His father had that and he just is in denial. No point in telling him. He wouldn't remember anyway and to tell him would only cause him anxiety and pain.
We told my wife when she was diagnosed, she thought the Aricept would help her get well. We were able to get her to understand that the Aricept and Namenda would slow down the AD. She knows the TIA's and strokes have taken away her memory and has physically affected her mobility. She understands about the strokes but not the AD. AD runs in her father's family, her uncle recently passed away with AD and her younger brother died with AD two years ago.
If they are still able to understand, it is OK to tell them, but I woudn't push the issue because IMHO the majority of AD patients remain in denial and don't really understand the full impact of AD upon their lives. It was easier for me to say "yes, you have some memory problems" or something very simple and let it go at that.
A year or so ago my wife would frequently ask "what is wrong with me?" We would then have a discussion on AD. That has not happened in at least a year. Occasionally she will comment that her "brain isn't working", but nothing further, no questions or discussion. I still mention AD to others in her presence and she doesn't mind.