My DW is always asking me (several times per week) when will she get better or that her doctor has given her a new medicine (he has not) that will make her better. I tell her that I don't know and that her doctor has prescribed the best medicines available and that if a new drug becomes available, he will let us know about it. She tries so hard to do things that she was once able to do and does not understand why she can't do them anymore. She knows that she has "problems" but we have never told her that she has Alzheimer's Disease. I feel that it would upset her so very much and that it would do no good to tell her. And then, she would probably forget that I told her, so why or why not tell her?
Jerry i think you answered yourself. i feel it would upset her too much and it would do no good."and she'd forget anyway. exactly why we never mentioned it here in our home either. DH never knew what hit him and its been 10+yrs-i think your explanations are good ones. elaborate detailed info is hard on them and even if you spend time talking/explaining about it they forget and would only ask more questions and would make them anxious. at least thats my input. divvi
My DH was told by his doctor at diagnoses. So this has never been an issue. My DH was diagnosed in Stage 3, 7 years ago, and was capable of understandins...BUT...he would take his Aricept every day, and still deny he had Alzheimer's.
Jerry do you think if you came up with a name for it, such as "Your Virus", it might ease her mind, if even for a moment? Sometimes if you stick with a certain term, it helps. How long ago was she dx'd?
She was actually diagnosed in March, 2006 but my daughter and other family members already highly suspected that she had EOAD and we first noticed as early as Fall, 2001. We, my wife and I just refer to it as her "problem". She is probably in all of stage five and some into stage six.
Dr.s told my DH at diagnosis in Aug.-Sept. 0f 06. Naming it did nothing for him and he forgot all they said. I just simplified all their explanations down to your blood vessels can't take care of your brain right, so it's having trouble doing all its jobs. We're doing all we can to help. He was already starting stage 5. Vascular Dementia.
Doctor told my DH at DX. Now, DH tells everybody! I think he feels if they know,they might overlook things he might say or do?? He is very comfortable talking about it too. I don't bring it up - but he will. Although sometimes when he does,he gets very sad and I try to divert.
I think this question is one of the hardest to answer with our spouces. Sometimes Carol and could talk about her memory loss but the name Alzheimers seemed to just go over her head. She had a heart problem that caused a lot of problem with seizure type episodes. After she got her Pacemaker, they told her as she was leaving the hospital that everytnhing was OK and she was going to be good, do anything she wanted. Well she remembered those words of encouragement and kept throwing it back at me, especially about driving. But occassionallhy she did realize that she did have a problem and wanted to know if she was ever going to get better. I told her that they were working on new medicines and we sure hoped they would. But I never really pushed it on her and finally she has just forgotten that she has a problem. It is so sad that we can[t talk to her about her own body and health. Some AD patients actually have their own chat rooms. Carol was never able to be that verbal about it.
When the neurologists told my husband his problem was vascular dementia as a result of his heart attack he said, "Thank heaven, I was worried it was Alz". 13 years later he still tells me he wishes he could make it better for me, but he just can't get it together. That is only when he recognizes me the rest of the time he wants, "That person that takes care if me". For him dementia is still better than Alz. Not for me!
Siem was told; it was mentioned several times on the way to dx (and then he didn't want to go back to that doctor who said those stupid things to him) and then finally by the neurologist at dx. He responded as if shocked, turned to me and said I would have to take care of him. I said I was already doing that and would continue. Siem even acknowledged this to our friends who came over that evening and asked him "what did the doctor say." (I had already told them but we wanted to see what he would say: he said the doctor "thought" he had Alzheimer's.). But since that moment he has never acknowledged it and never refers to it. He is convinced that all his meds are for diabetes and that the appointments with the neurologist are standard for seniors. I wish we could talk about it. I tried once to talk to him about it, in order to try to convince him that he should stop driving, but he denied it emphatically, and got very agitated. I dropped it and have not brought it up again. When AZ comes up, he is willing to watch TV programs, read articles and pamphlets, even go to the support group, but he connects it all up with his mother who died of severe AZ in a nh -- never with himself. Complete denial, but not because anybody tried to hide it from him. I am convinced that he is deeply afraid of the knowledge and this is his way of coping.
Dick was told be Neurologist that it was Alz, When that doctor told him not to drive he stopped going to him. We now go to the VA and he has been told, but I've mostly called it memory problems. I do occassionally call it alz, but it doesn't seem to matter. i guess he doesn't realize what that is. When he says to me, What's wrong with me, am I losing my mind I tell him it's just the disease and he has to take his meds to keep the disease at bay, so he doesn't get worse. that seems to work.
jeannette, I do hope you've handled the driving issue. Check the old discussion on The Driving Issue. I am still in it, although my DH hasn't driven in over a year. he still thinks he can and it does rear it's ugly head once in a while. it was especially bad recently when I was ill, and couldn't drive. i had to call my son to take me to the doctor and what a ruckus was raised. the next time I did that, I drove to my church and had my son pick me up there so DH wouldn't know i couldn't drive. Fortunately it was only a block away. It's the bane of all caretakers existance.
When DW was diagnosed we told her what she had. After discussion, she agreed that we could tell our family and friends. She has never used the word Alzheimer's, but is perfectly comfortable having it discussed with her present. A year or 2 ago she would ask me what was wrong and we would discuss AD. She no longer asks. A couple of nights ago I wanted to watch the HBO program on AD. My daughter had taped it, and she wanted to be with me when I watched. DW was present and watched it with us. I don't think it meant anything to her. She seemed fairly interested, but no bad reaction.
Charlotte, same here. My MIL had Alz, so my husband knows all about it and what is coming. He talks about it to friends and whenever he has any kind of complaint, he says it's probably the Alz because the neurologist told me it affects everyone differently.
My husband was told by the neurologist that he had vascular dementia. I have no idea if he understood what that meant then, or if he knows what is wrong with him now.
But if she is asking, I think one of her doctors ought to tell her what is wrong with her. I know that when my husband came up with the idea he needed a tummy tuck two months ago, the doctor explained why he wasn't a candidate for elective surgery and that was that. He has never mentioned it again. That didn't work with the driving issue, but it was also a different doctor.
Jerry, My dh was told by the dr. We looked at each other, listened intently and left. He never spoke about it. His grandmother had ad and he lived with her so he knew better than I did about what was to come. Many years later, there were times when he was very quiet and suddenly started to cry. I knew what he was crying about. We hugged and hugged. Eventually, this happened less and less. It was the most heart breaking part of the disease so far. As for the driving, once he retired, I would not let him drive me so he got used to being a passenger. When he went to renew his license, it required he sign his name. He did it nearly vertically and afterward he said he would never do that again. Forgot all about driving. He knew his problems and did not fight me when it was time to relenquish things. The only thing he fought me on was personal care- boy could he hold onto those depends!!
I called my SIL who lives in a complex in Manchester, NH. She was diagnosed in 2005 at age 55. She has memory loss worse than my husband, her daughter calls her morning and night to take her meds, but she still is volunteering at Easter Seals which she enjoys. She was telling me that very few in the complex will admit to having AD. I told her that is very common. She has never denied it, it was almost like it was her 'Red Badge of Courage' when she was diagnosed.
Good point Susan. If they are still early in the disease where they are still very aware, then telling does allow the time to mourn, grieve, plan, etc. Many people never have spoken about their end care, what measures they want taken or not. As always, it has to be an individual call, but would you not tell someone they have cancer?
All my DH knows (as far as I know) is that he has memoroy problems--a little dementia. He denies he has any problems and taks the medsw because if makes me happy. We don't use the word AD around him but just about every one has picked up on it. It's pretty obvious if you talk to him any length of time at all. Really sad. I did let my neighbors know just in case he should decide to take a hike and they could call me. I appreciate that. He's never wandered and I hope he never does, but then, you nefer know.
Today, my DW asked me again "why can't she get better?". Again, I told her that " her doctor has prescribed the best medicines available and that if a new drug becomes available, he will let us know about it." And then I told her that she has Alzheimer's Disease. We hugged and cried and she told me that she didn't want to live when she gets to the point where she "doesn't know anything" as that would not be fair to her or me. I'm still crying!
Glad you got the elephant in the room out in the open. Now you can breathe easier and know that the "words" won't be scarey anymore. As you already know, she may well not remember what she has and it doesn't matter if she does or not. Bless you and DW. hugs
When you don't know what it is it's harder to stand up to the fight. When you know it's name and stare it in the face, you become stronger. Telling her took the mystery, the secret away. That gives you power. Now whether she remembers or not, you've reinforced her trust that you stand with her. I don't think there is anything harder than trying to fight a shadow. You've put on the lights.
Jerry hoping your day today is better and you can find a smile. you got if off your chest and its helpful to get it out in the open whether she remembers or not.divvi