For all of those concerned about awareness, you’ll be happy to know that some high-school students are spending 2 full class periods on Alzheimer’s Disease (and they are bloc periods – so twice as long). Yay – for awareness! Not so much yay for my son. He came home the first day and said, “Guess what we are studying in AP Psych? Alzheimer’s!” and he mocked pulling a trigger on a gun to his head. Poor dear. Today was worse. He came home from school and wanted to know if it was true that he has a 50% chance of getting Alzheimer’s disease because his father has it. He got that stat from a movie in his AP psychology class.
He was on his way back out so we didn’t have much time to talk. I said, "Nooooo, that’s not true. Sometimes Alzheimer’s has a genetic component, but even if you have the gene, you are not guaranteed to get it. But no matter – that’s not something you should worry about." He asked if there was a genetic test. I said yes, but that he would not want to do that. He said he definitely wants to do that. I assured him – no, no, you would not want to do that. “Why not?” he asked. Well, you wouldn’t want to go through your whole life worried about that. He replied, “I want the test; I definitely want to know!” As he walked out the door I cautioned, “Well you would definitely have to give that a lot of thought.”
UGH!!!!! I hate this!
He’ll be 18 in a few months. I won’t be able to keep him from doing it. You can do it for $100 now from a mail order kit.
UGH!!! Well, at least tonight’s “lay awake all night worrying” game – will have a new topic.
Hmmm, maybe I can parlay this into guilting his father into seeing the doctor and getting a scan….I’ll have to chase that idea around my head tonight…
Guilt is something that most AD people don't have. That probably is one of the reasons so many of the men like to look at porn and just several years before they would never think of doing something like that or if they thought about it they wouldn't do it because they knew it would be hurtful to their wives. That also might be an example for you to consider why your dh won't keep his dr. appt. knowing you want him to do so badly...he doesn't have any guilt by not doing it and the same way with driving...he doesn't have any guilt that this could be financial disaster for his family. These are such difficult things to wrap our heads around early on and to just totally think in a different way then we did before the illness.
My dh had no problem with accusing my best friend's husband of stealing a gun he had and refusing to let him come in our home. This was so off the wall of the type of person my dh was it drove me nuts. Thankfully, these friends understood and I would go see them for an hour or so every few weeks and call them. But, to avoid any problems I might have with him they never stepped another foot in our house. Guess what?? Just about 3 weeks ago I found that gun in the bottom of my dh's golf bag wrapped in paper towels and tape. I knew the friend would never steal anything from our house...but, I would try to just say...OK...next time I see Dan I will tell him to bring your gun back because I knew I couldn't reason with him. Like someone else said...his reasoning buttom was broken. I do hope things get better for you.
I did think of another way you might get him to the dr. Do you both have the same dr.? If so, tell him you might have something wrong with yourself and you want him to go with you for support. Of course, you would have to talk to the dr. first so he would know what is happening and the dr. could take it from there.
On the one hand I'm glad that schools are interested in teaching about AD, but on the other hand there is so much misinformation out there, and much of it comes from 'experts' and the medical community, that it's a scary thing. People should not have the test because it is not accurate as to possible outcome. Maybe a test will be 100% effective eventually, but not now. Further, if you have the test and your medical records are examined for insurance or job application you may be turned down when you'd never get it anyway. And it can impact your relationships. We ALL live with the possibility of getting one disease or another, there's no yes/no guarantee to any of it. I can understand how your son feels, the school should be more cautious about who is in classes like this. Again--that just shows how little the public knows about it, how it affects others. I feel so bad for your son. But a test won't guarantee anything for him.
My grandson is in college and has a class where he has to give a speech once a week. His next one is on Alzheimer's. His choice. I'm curious to hear it.
Betty, Thank you! That's the perfect explanation for my son. And hopefully will put this in the proper perspective for him.
He is such a good kid, and has been such a trooper through this all! Until that lovely stat was blasted in his face, I don't think he ever gave a thought to the possibility that he may follow in his father’s footsteps on this. Unlike my middle son, whose first question to me was, “Is this inherited?" and my oldest, who’s decided he's moving to the opposite coast. Such different personalities.
I'm not upset at the school. They can't protect every kid from every hurtful truth that may be taught in class. I'm just happy they are teaching the truth. I sure as heck didn't learn about Alzheimer's in high school. Of course back then I think everything was just lumped into one big pot called senile dementia.
Judith, I get what you're saying. But guilt (or love) is the only reason my DH went to see a neurologist in the first place. He has been fighting this every step of the way. After the CAT scan to rule out brain tumor, and all the blood tests to rule out other causes, he was ordered to see a neurologist. He flatly refused. Even his brother, who had previously talked him into the CAT scan, could not get him to budge. Of course, we were stuck. We couldn't make him do it. And those were the dark days when DH was flying into rages (that's mostly gone now - thank God!).
Anyway, a few months later my son had his 15th birthday. DH had always given our sons birthday cards with $10 for each year of life. Then that money would be put "on account" for their purchases that year (it was essentially their annual allowance).
My son opened his birthday card and then went off to school. I went to the card to take the money out and the card contained only $110. Hmmm...I wondered why my son would take the other $40 to school? I mentioned the missing $40 to DH when we lunched together. "Well, you better find out what he's doing with it!" I agreed.
The next day as I was driving my son, I asked why he took the $40.
Son: What $40?
Me: The $40 from your birthday card. When I went to collect the money there was only $110.
Son: That's all that was in the card when I opened it.
I suggested he call his father, and the two of them get it straightened out. He called. His father insisted he had placed $150 in the card, and demanded to know what my son was planning to do with the missing $40. DH was shouting and working into a rage. My son calmly explained that there was only $110 in the card when he opened it.
DH (very upset now): I know for sure I put $150 in the card! There were 5 twenties and a ten!
Son (still calm): Dad, do you know how much 5 twenties and a ten is?
DH: Hold on. Let me think about this…
That was one of the saddest moments of my life.
But DH called that afternoon and made an appointment to see a neurologist.
So hopefully, there’s enough of that love/guilt left in DH. He loves our youngest son dearly. Maybe I can convince him that he can remove a lifetime of worry for his son by just getting the scan. I know that probably won’t be the outcome (a negative scan), but maybe I can convince him it will. And that getting the scan is the right thing for our son. At this point, I’ll try anything.
How sad...this condition is just sooo sad in so many ways...your story breaks my heart. You with young children have it the worse in my opinion. Every step of the way takes alot of guessing on the caregivers part and what works one day doesn't work the next. We will continue to be here for you.
I talked to my (soon to be 18 year old) son about his desire to run out and be genetically tested for Alzheimer’s. I told him all of Betty’s very good points. I also warned him that if he ever decides to do it without consulting me, that he must be very careful to do it anonymously, so the results would not be tied to his identity and used against him for insurance, etc. He immediately wanted to know how he would go about doing it anonymously. While I was trying to present the reasons why he shouldn’t have it done, he interrupted me with a raised voice and said, “Mom, personally I don’t give a f*ck if I’m going to get it or not!” That word is out of character for him and he was obviously very upset that I would be trying to stand in his way on this. I asked why he would want the test if he doesn’t care whether or not he gets the disease. Again he raised his voice and said, “I’m just curious. That’s all!” He has lived with my husband’s issues up close and personal for the last four years, if not longer – and it has not been pretty. He has been an absolute trooper, but this stupid statistic presented to him in the class movie has got him rattled. Boy is that a bell I wish could be un-rung. I am sure it terrifies him to think that he could follow in his father’s footsteps. It saddens me so much that he has this hanging over his head and that I cannot fix it for him.
I ended the conversation by reminding him that we don’t even know if his father has Alzheimer’s, so let’s try to get that resolved first, before worrying about who’s going to get it next.
Tomorrow’s the big day for my next showdown with DH. I am going to use this situation to try and guilt him into getting the PET scan and getting a diagnosis once and for all. I tried last week but he flatly refused. And if he won’t consider our son’s stress, I guess nothing will work. After this conversation with my son, I want to wring my husband’s neck (not literally). I am going to have to be extra careful to remember this is not DH’s fault because his reasoning button is broken. Or maybe it’s time I stop being so understanding and just go off...
mary so sorry to hear of your sons distress over this. with teens for me personally this could be very serious. it would worry me alot as to why he needs to know this info. if he sees what the disease is doing to his dad, i would be fearful he may do someting to harm himself if he found he did have the gene. even without your knowledge he got it. that would be my real concern. young teens are very impressionable as we see all the time. can you get him to a therapist to talk this over? if it were me, and he is expressing this concerns i would find a way to get him some professional help asap. hope your DH cooperates. its not only him but your son sounds as though he may need some guidance here too.
1. Call the school and dump the problem with your son in their lap. Tell them they’ve presented some incomplete information In their class on Alz. There are already kids affected by Dementia in their families, and the testing only applies to a few identified cases—NOT all, and not those which. haven’t been fully identified or aren”t Alz. Also, that here are reasons not to be tested because the uses for the results can cause problems --ie getting medical or life insurance.
2. You can’t reason with your DH about the PET test—that’s broken . And you said he’s adamant about not going in because they’ll tell him it’s Alz. It also sounds like his self-centeredness is preventing him from being concerned about the effect of it on his son. Have you tried this
“It’s too bad you’re afraid to have the PET scan, because it just might tell us you don’t have Alz. Some problems can look like Alz but aren’t and can be treated or even cured…..if they’re caught. Nope, you’re so sure they’ll say, it’s A LZ , that you won’t even take the chance to know for sure. As far as I’m concerned, that’s quiting. Besides…nothing would change if they did say it is ALZ, our life would be the same as it is now, because you’re living like it is, already."
You might have to break this talk up into pieces, but appeal to his pride—in a negative manner. May seem mean , but sometimes we need to reverse our approach to get what needs to be done.
Oh my Divvi, that never occurred to me. I guess we can never know for sure what’s going on inside a kid’s head. His reaction to the movie shows that he may have been worrying about this all along and it just came to the surface. He really is a solid kid – he’s an Eagle Scout, coaches younger kids in basketball, volunteers with Habitat for Humanity, never got into drugs and alcohol (and if ever a kid had an excuse to, he did). He’s very focused and looking forward to college. Wow! I just realized that’s the way the news article reads when there’s a bad headline. Oh dear…. He does have a steady girl friend whom he shares everything with, hopefully there’s some therapeutic value to that. I’ll give him a little time and space and then broach the subject with him.
It occurred to me last night that there’s another reason this genetics thing has him so upset. He has inherited a familial tremor from his father. That’s a benign condition where your hands shake very slightly. He also takes after his father in looks. So yeah, he’s probably convinced himself he is destined to follow his father.
Carosi2, thank you for the suggestions. Yes, I’ve tried that. DH’s reasoning is non-existent, especially on this topic. I have always been very careful not to drag my son into any of our conversations. But, with my son’s permission, I will now. Hopefully our son’s concerns will make him see the light.
The movie was factual. If one parent has one of the 3 genes linked to EOAD, the child has a 50% chance of inheriting the gene – and if they inherit the gene, they have a 100% of getting the disease if they live long enough. I did explain to my son that there are people who have EOAD without having those genes, so even though his dad was diagnosed with MCI at 59, he probably doesn’t have that rare form. But at this point, I think my son’s fear is probably trumping any reasoning with him, too. I’m sure he would like to get the test, find out he does not have the genes, and remove all the fear. He’s not thinking through the other side of that equation.
There are genetics counselors – if it comes down to that, I will have my son see one. I believe they are good at talking people out of it.
Thanks so much for listening. If I wasn’t able to come here and vent I’d have a stroke for sure.
P.S. For anyone interested, here is the latest on the genes involved with AD: http://www.mayoclinic.com/health/alzheimers-genes/AZ00047
DH is refusing to get the scan even to alleviate our son’s concerns. Wow! That was an eye opener. I even threw in Divvi’s point - I asked him how he would feel if our son harmed himself. His response, “Don’t put that on me. You’re the one that dragged him into this.” I finally completely get it - there is no reasoning with him – period.
I think I may have a solution to my son’s worry. It’s not perfect because there’s a remote possibility it will involve me lying to my son – which I abhor the thought of. But this is the best I can come up with…
I am going to talk to our doctor on Thursday. It’s possible I can agree to let my son take the genetic test – and that those results would be sealed because he is a minor. If that’s the case – he can take the test. Odds are he’ll be negative for the EOAD genes – that’s a very rare form of AD. And if he was positive, I can Photoshop the report, change the result to negative, and lie to him.
I know that’s wrong, and on many levels. But I can’t think of any other way to resolve this for him, and I can’t bear the thought of this hanging over his head. And the odds are that I won’t even have to lie to him.
This is one time, I take no pleasure in being right. I only spoke from experience. They have no quilt about most or everything. I will express one more method that might work for your Dh....I used this method too when my dh wouldn't cooperate with something I not only wanted him to do, but something he needed to do...I agreed with his decision NOT to do what I want. It went something like this.
OK, I've asked you numerous times to take this medication that will keep your condition from getting worse..But, you refuse....Now...I've decided you are probably right..it is best you don't take this medication because it will prolong your condition...this way without the medication your condition will worsen faster and I won't have to be involved with your care so long. We will just get this condition over with probably in record time which will be good for you, our son and me. If and when you change your mind, let me know...however, you won't have a mind that works too well very long so you probably will forget all about this. Better for me, because I am the one I will be looking out for now. And, I can honestly say that is the way I felt about it...just get worse fast if you aren't going to cooperate.
A couple of days later I saw him looking at the container of pills. I asked him if he wanted to start taking them and he said "Yes". I never said any more about it and neither did he.
"I thought about it and you're right. If I had Alzheimer's I wouldn't want to take drugs that could give me a couple extra years. I'd want to go as quickly as possible."
All I have to do is get over how cruel I would feel saying it...because even though I am extremele frustrated, I still feel so badly for him and understand where he is coming from...
oh mary. what a decision to make. if it were me, i would not opt to lie to dear son regardless of the outcome for HIS testing. if possible it would be better to lie and say your husband does not have AD. the test showed mini strokes or whatever you think of as an excuse so he doesnt worry at this point. then when the time is right maybe later- say the drs were wrong -if he did develop AD later one.
i agree with judith if my DH was so very uncooperative, i would throw the book at him. selfish or not, its in the best interest of the family to know how to proceed for the future and what legalities need to get done to ensure your future and sons. i dont know, but yes saying without meds they will progress very fast and wind up in a facility alot earlier than if he was under medical care. its all very iffy how they can be reached at this point. the only other choice is to wait and bide time til he progresses and is no longer in charge of his own decisions.
I know you are right divvi. I don't lie; I know that lies and secrets just snow ball and never end well. I don't actually think I could lie to him. Besides, if I lied to him, so that he could go off to college and enjoy his life without this burden - the obvious question is - when do I tell him the truth?
I just am so desperate to fix this for my son. I am going to pray that God removes this fear from him.
I just read that about half the cases of EOAD are the familial type. That's not true is it?
Mary...there are just so many things they really don't know for sure about AD. Here is how I look at it and I told my dh this many times before he got worse and that is "At least you don't have any pain.". I also know that as he got worse he never thought he as getting worse so he really didn't understand what was happening.
If you feel you need to tell your son this then try and think about all the positives (that's sometimes hard to do I know). But, here is how I feel about it. We all have to die sometime of something. So...I say to myself if I get AD at least I will not be aware of what I have and I won't understand how bad I am getting. Really..what is a better way to go then having something that makes you not aware that you are going to die with little to no pain. Also, by the time your son is that old they may very well have newer medications or even a cure.
Also, since these tests are fairly new...there probably is limited facts supporting that you will get AD just because you have certain genes. Even those that have taken the test and been positive there are probably few that are old enough to have developed AD to know for sure if the test bare out the results from years previously. Also, you have probably read where researchers like to announce something new when there could be many flaws in the test just to get more money for more research. Maybe you can pick and choose some of the things I am posting if you feel you have to talk with your son. I'm sure you will know how to handle it when the time comes.
Dominantly Inherited EOAD is very rare. My husband' family has the gene PSN2. You can learn more about this type of EOAD from this site. http://dian-info.org/
Mary22033---Rereading my previous post an the others since, I see a couple possibilities which might reslove the issue for you, satisfactorily. Regarding your DH---Reverse your approach. Tell him you're done talkng abut the tesinjg. Even if could help him and help ease our son's mind, i's not worth your time to argue over it. He doesn't want it-fine. He can't hve it.
Do not lie to your son. Talk to the Dr. and explain your concerns. Then tell your son, that there's a procedure involved with such testing and he'll have to talk to the Dr. before it's done.Tell him he knows you have serious reservations about doing it now, when you don't have a solid Dx for his Dad, but you know he's nearly 18 and will be able to go ahead then,if not now. Offer to set up the appointment if he doesn't want to wait. It will always be available whenever he decides to go ahead. He needs to know you'll be behind him on this, even if you aren't in total agreement. This is a time when you have the chance to strengthen your bond with him so you can continue to support each on this journey with his Dad.
Mary, I agree with Divvi. If you are that concerned about your son, I would tell him what Divvi suggested - that testing shows that your husband had multiple mini-strokes and not AD. It isn't actually a lie, since your husband has not received an official AD diagnosis, and probably won't if he continues to refuse to be tested. It sounds like your son is really very upset, and I would do whatever I could to help him thru this - now! Let the future take care of itself - hopefully with a cure within the next decade or so.
Of course, you still might be faced with him not believing you and wanting to go ahead with the testing. Maybe you should seek some advise from your doctor on how it could be done on the Q.T. just in case.
Thank you all so much for your support and suggestions. I decided I can't lie to my son - of course! All I can do is give him the tools that will help him to make an informed decision, and then support him in whatever decision he makes.
I'm going to give him a pros & cons matrix because, after all, what situation can't be fixed by just analyzing it to death? LOL! I have incorporated all the great points made here.
If that doesn’t dissuade him, I’ll take him to see a genetics counselor. And I will talk to our family doctor on Thursday – see if he has any brilliant ideas.
BTW, when I was looking for something for my son, I found a great article that helped me, too. I would like to share it with anyone who is interested. It might help you in your own times of worry. It is biblical based so I won’t share the link here - if you are interested you can e-mail me and I will send you the link. Replace "AT" with the @ sign in this string ---> maryk22033"AT"gmail.com (I have to print the email that way so a spam bot won’t pick up my e-mail address)
Thank you all once again – your support is priceless!
What I say to my college age kids is that they will have found a cure by the time they are old enough to show symptoms of the disease. It seems to work for them.
Mary: I just read a short article in a magazine. I won't quote the entire thing here because it is stuff we all know. But, it is interesting regrarding your son...but, stupid regarding doctor's opinion. Dr. ERIKA SCHWARTZ,MD....
"Alzheimer's is a complicated disease, and we know very litte about the genetic connection. What we do know is that there are things you can do to prevent it."
Then she goes on to talk about the things we eat and exercise your brain by doing crosswood puzzles
Mary, If it were me asking my Mother at the same age her denying me the test would just be confirmation that it’s true. Even knowing what I know today I would want to take the test. Guys don’t think like ladies. By knowing I would be able to prepare if it was positive and if it was negative then you have reassured him that he has nothing to worry about.
If it came back negative I would be able to plan my life better around it. I could arrange things for my care later when it began having an effect. But before he gets the test explain to him he needs to have health insurance, life insurance and long term care insurance because if he gets a positive test back he will not be able to get them. Explain to him also that considering the need for insurance should the test come back positive he should hold off getting the test for a few years until he can afford all the types of insurances he will need prior to taking the test.
Thanks Jim – it is always useful to be reminded that men think differently. I grew up in the middle of three brothers, and all three of my children are boys – so, I know that is true. And I guess that’s it exactly. My son thinks: here’s a problem – what do you do with a problem? – you fix it. If that happens to lead to another problem – well, then you fix that.
He was funny. I put together a matrix of each possible outcome in an attempt to get him thinking about the fact that there really is not much to gain, and potentially a lot to lose in getting the genetic test. I pointed out that if he knew he had the gene, he would have to tell any woman that he wanted to marry. How would he feel if she decided that was not something she wanted to take on? He just blew that off, saying, “Why would I want to marry someone who thought like that?
Yep. We think differently :)
I now have some hope that he will settle down about this. I stopped by our local Alzheimer’s Association yesterday to ask for a referral for a genetic counselor, in case my son needed one. A friend had given me the name of one person in particular there who would be able to relate because her own father had been diagnosed when she was just 15. I shared what she said with my son and afterwards he was saying, “I still want to do it. But it’s not like I have to run out and do it tomorrow.” I saw a lot of hope in his eyes when I explained that his father’s condition could very well be the result of several severe head injuries he incurred when he was younger – which obviously he is not going to inherit.
So that’s some progress.
This woman at the Association could not have been any nicer. She gave me her card and told me to encourage my son to call her. I don’t know if my son will, but I think he was happy to know that there was someone out there who knew what he was going through, and cared, and could provide him with help when he needed it.
On the down side, my DH has now decided that he’s going to fix this. Ugh! I know he means well, but he is not helping. I have to hand it to my son. He listened to my DHs confused attempts at comfort, and just stoically kept repeating, “So why don’t you just go get a PET scan, Dad.”
I hate that my son is having to deal with all this. I just have to keep reminding myself that - what does not kill us – only makes us stronger…
Oh, yes, start to tell a man about a problem and before you finish he'll fix it--or tell you how! But your son sounds like a real winner, he has his head on his shoulders but is also going thru profound traumas on many levels. As you know for yourself, AD is a heavy burden, it's his father, it's his life. Have faith that he will eventually put it in its proper perspective, test or not, and go on to have a very good life.