May I ask how your spouses were given their diagnosis? How much were they told? How did you tell your kids? We are facing this now and I'm not sure what to do.
DH's neurologist didn't give him a diagnosis at all. Hinted around, put him on Namenda but never came out and said he had dementia. I called the office the next day and asked what the specific diagnosis was and was told "pre-senile dementia". When I asked what that meant and was in EOAD I was told not necesarily. We had to get a second opinion and when I took the medical records from the neurologist, they clearly stated that he had alzheimers. The consulting physician gave me the FTD dignosis when DH was with the doctor's colleagues. I told DH he had been diagnosed with dementia. He doesn't belive it. We don't have kids, so can't help you there.
I am so sorry that you have to deal with this now Chris. For us, I had suspected it. I took my husband to the doctor and told the doctor what I suspected. I asked him to do a physical with an eye open for dementia. He ordered an MRI and wanted us to see a neurologist. Both my husband and I went to see the neurologist. He showed us the MRI that had both frontal and temperal atrophy. He asked questions about family history and specific questions to my husband. After all the information, he sat us down in his office and told us his diagnosis - moderate alzheimer's. I cried. My husband didn't seem to react. He asked questions of the doctor and we left. I don't think my husband really believe he had alzheimer's and now he is in full time care. Tell our family and friends was difficult because Mark didn't think anything was wrong. I took it upon myself to write an e-mail and send it to every one. His boys were both in their 30's. We heard from 1 of them a couple of times and the other not at all. This was in July 2008. I called my daughter and talked with her on the phone. She was aware that it was a possibility.
Regarding our grandkids (2 and 4), their parents sat down and told them that grandpa was sick. The older one has seen the changes. The younger one hasn't. When they asked where grandpa was at Christmas. I just said he was sick and needed someone to take care of him day and night. They seemed to be ok with that for now.
Hugs to you (((((Chris))))). It will be difficult. It is OK for the family to cry. I find it best to just talk about it. I pray that you have the strength to do this difficult task. It is the first of many you will have on this journey.
We have been seeing a neurological psychiatrist for about 1 and 1/2 years. He has been very slow to give a diagnosis but had to for SSDI. As is probably fairly normal , John's symptoms "didn't fit". also I think the doc worked very hard to get his memory "back", orignally thinking it was seizure related. He started having memory problems in 2004 and was hospitalized with seizures 2006. After that things started to go downhill but nobody could figure out what was wrong. He had to retire in august. Since there is no exact diagnosis until autopsy is it fair to say "probably"?
This non-diagnosis business with doctors is a real problem for me. I urge everyone to go to a memory disorders specialist (list on left side bottom of home page - find a memory disorders clinic in your area), get all the testing (blood work, MRI's, neuropsycholigical tests, EEG's, patient history of problems given by spouse), and get a diagnosis. It may be Alzheimer's, vascular dementia, Lewy Body Dementia, Frontal Lobe Dementia. It could be a vast variety of dementias. After all the testing is done, I would demand a diagnosis. Once you have an exact diagnosis, you can educate yourself and family, know what to expect, and get the proper treatment. Our doctor was up front and honest with both of us. We were both told the diagnosis, and we immediately contacted the Alzheimer's Association for a support group.
That may not work for everyone, but it was best for us and everyone we know who is dealing with any type of dementia.
As for your children, you did not say how old they are. Just my opinion, but I think adult children should be told exactly what the diagnosis is, told what to expect, and be given reading material - "Understanding the Demential Experience" can be downloaded - it's on the left side of the home page - www.thealzheimerspouse.com - and is one of the best resources I have read. I just gave it to Sid's lifelong friend, who is having a hard time seeing Sid decline.
As for younger children - under 18 - there are simple videos - see the section on the left side of the home page -"Educational Videos and Slide Shows". Here is a link to some very simple, excellent videos - http://www.aboutalz.org/. Also, www.alz.org has a section on explaining AD to children.
And on my home page, there is section on AFA Teens - a website by and for teens dealing with their parents' AD.
My husband has been dx'ed since '08.But this week, he has been so upset, feeling I am just putting up with him and waiting for him to die. Why? Because he has become so obsessed with sexuality, waking me in the middle of the night, wanting me to get undressed and return to bed in the daytime(He has stayed in his pj's waiting for me to comply)it is driving me crazy, which is why I started the sexuality discussion last week.I followed a fiend's advice, and slept in the guest room for 2 nights, and he came in in the morning for a hug. I thought that was great. But he has gotten so depressed over this, he asked to see his medical records and who had dx'ed him with what. So I let him have his folder, and he says he read the whole thing, psychologist report, 2 MRI's 3 years apart,etc.He saw that he has an Alz dx and a Parkinson's and says he is going to tell the doctors I am demented as well as he!Sense of humor intact, I thought, but no. He is still upset, calling for a lawyer, yelling divorce ideas, so mad at me. It is so hard to be kind and low key. I have started wearing man overshirts so I don't flaunt my sexuality (ordinary t shirts and jeans are my usual wardrobe)Phyllis9
My husband was told early on by this doctor, and he still doesn't believe any thing's wrong with him. Me, yes! He looks around at the other patients in the care facility and tells me to shoot him if he ever gets like them. Then there are other times, just recently, when he is frightened and bewildered. "My mind's going," he says. And all I can say is, "I'll be here to help you out." It seems to be enough at the time.
Phyllis9, my DH is often like yours. For years I've been living the modest life of a nun so as not to do anything to arouse him. We have not slept in the same room for probably 3-4 years. Just keep at it and ask the doctor for meds to help. My DH also refuses to believe anything is wrong with him although he's been told point blank by two neuros that he has dementia/AD. Wish I could offer you better news.
ChrisS - we suspected it. After the test, the verdict was probably dementia of the Alzheimer type. It did not surprise us because his uncles,grandparents, and dad had it. His younger sister was diagnosed in 2005 at age 55. In 2008 he was diagnosed at age 60 although he had symptoms at least 2 years if not longer before. We told our kids, ages 33 and 32, but our daughter seems to think it is something that will pass. Our son's wife keeps pushing their grandkids on us saying they want to see us. She has made the comment that they need to spend time with him while he still knows them.
I would tell your spouse and go from there. If a positive response - good. If they refuse to believe, then don't push by repeatedly telling. As for children, if adults tell them. Then suggest them to research and read books like Learning to Speaking Alzheimer's.
When my DH first started having serious memory problems his pcp ordered MRI and blood work and referred us to a neurologist right away. After the initial exam the neurologist told us DH had a brain disease. When pressed for more info he said DH had AZ. Neither of us doubted it; however neither of us had been around AZ so had no idea of the ride we were in for. We emailed our children with the dx, part believed and part went into denial for as long as possible. We also let our friends and neighbors know fairly early. One daughter works in an ALF and was aware as the changes started taking place. She has a 7 year old son, whom she sometimes took to the facility with her. He was a big hit and spent lots of time going around visiting with the residents. After she explained to him that Grandpa had a disease that would take away his memory, Aidan was always very considerate. He would talk with Grandpa and help entertain him. Aidan told my daughter at one point that he loved this grandpa the best because this grandpa was sick and needed the most love.
My husband suspected his problem was AZ,but our doctor at the time said it was stress. We changed doctors and the new one ordered an MRI and told my husband point blank it showed AZ starting.He also told him there was really nothing to cure it but he would try to slow it down, My husband was relieved to know someone believed him. His father had AZ .Our grandchildren were all college age so it was not a problem since they already suspected something was wrong.
The official diagnosis came in September, 2008 - after 6 hours of memory testing, MRI, and complete physical exam. In my LO's presence,the doctor said "dementia". When I questioned him about ALZ, he said yes and put him on Aricept immediately. In a matter of days I bought 4 copies of "the 36 hour day" and sent them to our adult kids; all of whom live out of state. Looking back, I believe that symptoms were present as much as 2-3 years before the diagnosis. My LO knows that he has ALZ. I don't think he realizes the scope of the disease. We told the neighbors and our friends a few months after diagnosis. Telling everyone is difficult - maybe because telling everybody makes it REAL. My sister- in-law was diagnosed with AD a few months ago.
A memory center is best, but if you live in an area, as I do, where there is nothing like a memory center available, find out where the cognitive therapists in your area work on stroke victims. When I asked for an assessment on my husband from our family doctor, that is where my husband was sent. You CAN'T fool someone who sees stroke victims, who can get better, all the time, for two hours a week. It didn't take her long to tell that doctor which neurologist in our area my husband needed to see. She did the basic assessment and some of what she taught my husband did slow things down, and one thing still continues. The neurologist was in a group that deals with dementia all the time.
My husband was in the room when the diagnosis was explained. I have no idea what he understood then or what he understands now. We never spoke about it. But there was also no beating around the bush.
The neurologist told him about 5 yrs ago, and I have told him many times. he is at the stage now that he asks... what's wrong with me? so I tell him, then he tell s me that that's BS. Kids have all been told. My children and one of his sons are very supportive. his other son took off for costa rica with his wife, and we hear from them rarely, basically if they need something. Oh well.
My DH was told he had MCI. He knew he had memory problems. When he got called for jury duty, I asked the Dr. for a letter to send in to have him excused. I picked up the letter and it said he had "mild AD". The Dr never said AD to my DH. He saw the letter and I asked what he thought of that. He said, I still feel the same.
We went to see a new neurologist today.He clearly stated in my LO's presence, both dx's. Parkinson's and Alzheimers, after doing a mini mental health screening, and a PD checklist screening.He prescribed a new med, but we won't get in from mail order until next week.We came home and his son called, and B says," I didn't answer some of those numbers because I wasn't interested in them."Sometimes denial is a good thing. Especially if it keeps a person having a positive outlook on life. In this case, not acknowledging that anything is wrong with him, lets him vent and blame others for every infraction, error, slight,etc.So unlike his mild, supportive pre-AD self.Happy New Year everyone. Thanks for reading my ramblings..I think I will get a bottle of champagne adn celebrate when the ball falls in New York, and go to bed at 1o here in AZ Phyllis9
Phyliss my husband said pretty much the same thing. "I wasn't interested in the words so why memorize them". Personally I don't see the need for them to accept the diagnosis. From now on he will always be right and you will be wrong. That's just the way it goes. I'm so sorry. Happy New Year is a misnomer.
My husband's neurologist took Charlie to the waiting room and told him to wait there while he talked to me. He was already having serious problems with his speech and he was extremely quiet on the way home. After several hours of this and some questioning on my part I figured out that he thought the doctor sent him out of the room so he could tell me that he was dying. I told him he was not dying and due to his inability to speak, we have not spoken about it again. I have no idea what he thinks and have no way of finding out.
Phyllis, My husbands initial neurologist put Alz in the original differential diagnosis and, when he eliminated other possibilities, diagnosed EOAD and recommended we get a second opinion at a Memory center. More testing confirmed the diagnosis. DH seemed to accept the diagnosis and had a less emotional reaction than I did, possibly because blunting of emotions had already settled in. He is less aware of the progression of the disease as time goes on. Our children are young adults and were in the loop from the beginning of the process. Your New Years plan sounds good to me. Hugs, Susan
The "not being interested in that" is a classic dementia answer. Frankly you don't need a mini-mental test if they aren't interested in learning their address or telephone number. Just hearing, "I wasn't interested in that" is enough for a diagnosis in itself.
Interesting to read everyone's comments. I decided I couldn't go on not giving John the information I had. I sat down and explained everything to him and his reaction:"What do we do next. I want to make sure you're taken care of." He has a very strong faith and I credited his low emotional response to the fact that he is not afraid to die. But as I read your comments I'm wondering if some of the reaction is the emotional blunting so often talked about. I still need to tell my kids the prognosis and I know they will be devastated. My youngest, 23, lives near us. She is bi-polar and this diagnosis is a bi-polar nightmare. Because of this we are not planning to tell her. She sees her dad most often and will become aware of changes. It might be easier to tell her down the line.
I am one of those that needed to have a diagnosis. I am glad that we have one now but wish we didn't know, if you know what I mean.
When the Neuro DX G he was very forthright...this is what the tests and xrays show..you have this...he has always been very up front about it. This is what both of us wanted, so no problem. Now...three years later...g sees others at the day care and sees his future...not so easy to take now.