Wondering how you handle the diagnosis with your spouse? Our family and I felt that it would be devastating for DH to find that "his problems" as he calls them are caused by AD. He has not asked if he has Ad and doesn't seem to have any idea. The Dr explained his deficits to him ...just didn't name it. So far, he just has focused on his inability to drive and speech difficulties. Since I no longer remind him that he has "forgot" , he is less bothered by that. He is aware that he is somewhat dependent on me but doesn't question it.
I feel that there would be no reason for him to suffer with this knowledge . Although, it is so very hard to pretend all is well everyday. Sometimes,I do not even know if he has the reasoning ability to understand his AD .
Families have argued over this - but I never mentioned the word to DH. I told him he had some memory problems and the doctor was helping him with that. I don't think he would have really understood if he had asked what AD was. Some patients have reported that they are glad to know what is finally wrong with them, but I personally wouldn't want to know and I don't see any benefit for them to know. None. Eventually they forget everything they've been told about it, so what's the point anyway? He suffered enough, he didn't have to know his future details on top of that.
I can't think of a particular reason. Jeff's Dx came when he was still cognizant enough to more or less understand, and the diagnosing neurologist did just tell us both, quite bluntly. For the next year or so he would occasionally tell people he had AD, although I don't think that he ever fully comprehended what the disease would do to him, which took some of the sting out.
As time went on he retained that he'd been dx'd with AD, but began to confabulate things such as "it's caused by low oxygen and Aricept brings more oxygen to your brain." Eventually he forgot that he had it, or denied that he had it. I feel like if your husband isn't asking, I wouldn't bother trying to tell him.
Thank you so much Betty for responding to my question. It is something that I have been struggling with . Knowing I am not the only one to feel this way is a comfort. At first, it felt like a betrayal to keep this secret from him. But, I too can see no benefit in telling him. However, it is Soo strange and Soo sad to have to bear this alone . Our spouse was the one we shared our joys and sorrows with and now we cannot share this utmost pain.
Lorry, like Emily's DH, mine was also told that he had AD, but never was aware that he was having any difficulties. I am ok with that. Better to spare him as much pain as possible. You are correct that shouldering this knowledge and the responsibility of now being in charge of everything is lonely and terrifying. That is one reason I am so grateful for this group. We all walk (basically) the same path and understand the stress and heartache that we each bear. God bless us all!
My LO was told in the DR's office an she couldn't comprehend what he was telling her,she never questioned or or was concerned about it.By that time most have retreated into their own world an reasoning has long gone,at least that was my expierence the last few years.
I believe Kathryn already knew. Her grandmother had it and she had been having some problems that she had talked about before we saw the first doctor. The worse part for her was knowing it was coming and understanding want was happening until she no longer understood. She actually knew when she was losing abilities and would talk about it was very scared of what she knew was coming in the near future. If there had been a way for preventing her from knowing I would without a doubt do everything in my power to stop her from finding out. It would have prevented her from having so going thru a lot of the fear she suffered. Nobody can really tell you how to handle it and in the early stages it's a hard choice to make, but once your loved one forgets I would never tell them again. I believe that once they forget it is a blessing and best to let them forget.
My DH's Dx was VaD. The Drs. told us at Dx. He understood, to a degree. After that, there were a few times he'd ask me about it. I never lied to him,but definitely simplified my answers. Even so he'd respond, " . . bunch o' BS . . ."and go off doing something else. Luckily, he never balked at seeing the Dr. He knew the Dr. was the source to have the meds, and he knew they helped---even if it was all BS. <grin>
My DH was told at the first appointment that he had dementia. And he went around for almost a year telling anyone who would listen that was what was wrong. Later I asked the neurologist what kind of dementia (AD) at one of DH appointments and by that time I think the info went in one ear and out the other. DH knows he has a memory problem and just knows that I keep him on track. And he is ok with that.
Same with us, blue. When he was first DX'd with ALZ, he would tell anyone and everyone. Now for the last few years, he never mentions it, but oe know that I take care of him - because he thanks me daily!
I never mentioned it to Claude either. He was just told he had memory problems and the meds were to help him with it. That seemed to satisfy him until near the end when he would start to cry and ask what was wrong with him. I would hug him, tell him it was memory problems, we would both cry and it satisfied him for the moment.. It's been nearly four years but I started to tear up typing this.
Like ol don* said about his LO, he wouldn't have comprehended anyway being told and it was easier for all of us.
My DH never accepted his diagnosis of early dementia & he never acknowledged that he had a problem. It frustrated me & our children because we thought that if he acknowledged that he had a memory problem maybe we could help him accept it. But he was the kind of guy who “never” had anything wrong. Now I realize that it was a blessing that he didn't acknowledge it because I don't think he could have coped knowing what his future would be. And like all the others have said, now it wouldn’t have mattered because he would have forgotten anyway.
MY DH has always denied that anything is wrong with him or his memory. In fact, the first neurologist who dx'd him with "presenile dementia" never once told us the dx until finally I called and asked the nurse. When she told me "presenile dementia" I asked "what's that-alzheimers?". She responded not necessarily and never offered any additional information.
There was a time shortly after the dx I wanted DH to admit his memory problems and the dementia diagnosis and quite frankly forced him to admit it. That was stupid on my part-why did I want to force him to admit it which made him feel badly? I finally let it go and now he still tells everyone nothing is wrong with him. I think he really doesn't know. Looking back, I would not tell him or make him acknowledge it-all it can possibly do is cause pain and fear. Shame on me.
I think their stage of life and stage of the disease plays a very important part of this situation.
My wife's Sx first began at age 55. (now 62) She was fully employed as an emergency nurse. Then after being fired from 6 different jobs in a year, all for "incompetence" and my anger with her (related to "WHAT'S WRONG WITH YOU !!??") and we were somewhat happy when the Dx was finally made.
Being early stage at that time (MCI) she was still driving and attending a senior center for lunch and some activity (she could not/would not fix her lunch at home) A 57-8 year old at a senior center needed explanation so we were all very open about it. My mother was very involved with the center and BECAUSE my wife & family were so open there were several others who came out and related afterwards that they felt more comfortable with the deficits because they did. In fact the senior center staff also learned from my wife and became better at supporting early stage Symptoms. (until she could not keep up with the program)
At the begining I attended an ALZ Assoc program where there was a couple, and the wife (who had it) REFUSED to let her husband tell her brother (or any one else) that she had AD. This resulted in a sad situation ("What's wrong with my sister??" "Why, nothing, she is perfectly normal") Eventually they did tell and felt better about it all. Denial is a big part of this disease and the longer a caregiver denies what is happening around them, the harder it is to do what needs to be done. You need to ask yourself, Are you not telling HIM because perhaps YOU are the one who doesnt want to hear the diagnosis??
I see you are a new member (welcome!) you will eventualy become used to what we have all learned - That this is a lonely road (you will no longer have your husband around to help you get through it) and tell him or not, none of it maters. The only thing that maters is keeping them calm and manageable.
Discussing things or not discussing them . . . whatever makes THEIR life easier will make YOUR life easier.
I only know that when our family doctor sent my dh to a neuro...and he confirmed my dh had AD. That was that. Of course, I knew he had something very bad and very strange for several years before this. He almost immediately stopped driving and even gave up golf unless it was a mixed couple type of golf and he would play as long as I was with him. I think he forgot how to keep score and couldn't remember where he hit the ball to and had trouble with things like that.
He never looked on it like it was a real burden until the last six months. In fact, he would often say to me "I don't think I'm that bad, do you think so?" and I would always reply..."No..it could be alot worse and you don't have any pain which is a blessing". Even the last month of his life, he would keep saying that and my reply was always the same.
In our case, at the neurologist appointment, our doctor, who is direct but kindly, just told US what the dx is...he was gentle and caring in how he delivered the news. And at every visit he is most considerate, reviews things out loud with us..DH does get a little forlorn but snaps out of it pretty quickly..guess that is the good thing about memory impairment. We do not dwell on it at home but now and then when something comes up I do mention his memory fuzzies...say when he says he can drive...then we go over the directions " cuz I don't know how to get there" and I just say well I won't learn unless I drive so you be shotgun and tell me where to turn..." His pride is saved...
My husband disgnosed himself,but his doctor kept saying no,no,it's just stress.We finally changed doctors and the new dr. verified it.My FIL died when he was 67 ,in 1958,from we assumed was AZ,but it not been heard of back then.My husband was relieved when the dr. told him he was right,he had been so frustrated his first dr. wouldn't believe him. Now he doesn't mention the word Alzheimers,I tell him he has a brain disease,like I have a heart disease.He's happy with that explanation.
My Dh's Dr told him he had dementia when first Dx , but it just went in one ear and out the other. So we just kept telling him he had memeory loss from a fall he had off the roof and had a brain trauma...but not even that .."it's all bulls...t" he'd say. Dr said he won't accept it because he can't comprehend it. I so wanted him to accept it, thinking it would be easier for him and family.He knows there's something wrong,I think the word "dementia' to him would be a stigma as it was thought to be many years ago I don't try to tell him anymore, I think he's confused enough as it is...even being in the NH and seeing others there with the same, he still can't understand where he is and why...
Bad me! I blurted it out and bawled all the way home from the doctor's office. Said it was a death sentence. Of course the doctor said it was Alzheimer's right there in the office. Oh, well. Done and over, but not done and not over.
Linda...don't be so hard on yourself...you are only human and have feelings too. I use to always tell my dh that there were alot worse things to have...then I would list, cancer so much pain, and any condition I could think of that causes pain. Try and assure him that even though we really don't know when any of us are going to die.... his condition could last for years and you could be long gone before he is. Also, tell him you don't want him depressed and you are going to be right there with him on this journey and you both still have alot of living to do yet. Now that I have typed this, it might have been years ago that your dh was dx. ...but, maybe my comments will help someone.
My husband knew and was confirmed to himself when they started the neuropsych testing. His dad died from it, his sister 3 years younger had been diagnosed 3 years earlier at age 55, so it was no surprise. Well, surprise may not be right since when his dad was diagnosed in the 80s we had him annointed believing the family 'curse' had been broken. He accepted with no problem so I guess he expected to be a victim. But, then he always as been accepting of anything that comes along. He tells people he has memory problems - maybe cause it is easier to say than Alzheimer's, but sometimes he will tell people that.
JudithKB, Lloyd was dxd January of 2009. And I have always told him that I will be with him to the very end. His decline in the last 3 months has been very rapid. He is having difficulty walking (which is the only thing he can do anymore for himself besides breathe). The doctor said he was end stage in September. I feel he will not last much longer. He has lost 40 lbs. since his dx. He can't find his way upstairs when I call him, but goes up and down for no reason all day long. It is just crazy! He is sometimes just plain mean to the smaller grandkids. The 10 and 8 yr-olds are forever telling their younger siblings "Grandpa is sick". And the 10-yr-old always tries to hug him and hold his hand and lead him around...not always successfully I might add. The little ones (4 and 2) probably can't remember when he was still good. His quality of life has been gone for a long while. I just hope it is over soon. Oh, I will miss him terribly, but I cannot stand to see him suffer much longer.
My husband knew on his own. As time went on he would ask, what was it I have again. As he became worse he asked, what's wrong with my head? I always would say, your memory is broken. He would be satisfied with that. He understood so little by then, I tried to keep it simple , like you would for a child. every stage is different. A touching story..... My little granddaughter came bouncing into the house, right onto her Gramps lap. She put her little hands on his cheeks and said. Don't worry about a thing, Gramps. Daddy told us all about it, you just aren't yourself anymore. Followed by a big hug and kiss. He laughed and hugged her tight and told her what a good little girl she was. I just hid my tears. I was so touched. Leave it to a child.