daydreams1991 wrote:Let me say first off that I 100% understand that I’m taking this way too hard. I’m a 28 year old 3/4. I hopefully will have a long life ahead of me....
I just can’t stop thinking about my 4 allele. It’s been MONTHS now and every time I see an older person or forget a piece of information I’m reminded of it. I literally have to remind myself dozens of times a day to stop thinking about it and enjoy the present. My mom and siblings regularly tell me to stop worrying about it, which makes me stupidly bitter since I was the only one who ended up with the allele from my dad. I keep thinking I’m going to end up like my great grandmother who got dementia before she was 68 and died without knowing who she was at 72....
I guess what I’m asking here is: how long does it take for me to not worry about this anymore? I know I’m going to live a happy life, even if I were to get AD, but it’s hard getting to that point. My apologies for the incredibly selfish ramble.
I'm going to quote your opening to make a point: "Let me say first off that I 100% understand that it is perfectly normal to feel the way you do" Here's a similar situation: Someone 28 (me) has her first child and finds out that he was born with several congenital (not genetic) anomalies. Not anything she did wrong in the pregnancy, just a 1 in 4500 chance that he'd be the baby who would need surgery at one day old, and five weeks old, and two years old and three years old and finally heart surgery when he was 5 years old. And she (ME) couldn't stop thinking it was unfair that other people's babies never even got ear infections and slept through the night. And she spent months worrying about his health--until she (I) realized what a smart, gorgeous, independent and brave person he was and how much I was learning from being his mother.
So what you're feeling and I felt has a name "Acute Medical Trauma Stress Response". It happens when we or someone close to us has an unexpected medical crisis or possibility of future crisis and we feel anger, or fear, or crippling anxiety, or the need to learn everything we can, or the desire to avoid learning anything more. Or we don't sleep well, or we feel (correctly) that our loved ones don't understand our feelings and their response isn't helpful. The most helpful response is this, which medical people are now using more often: Validate the feelings as normal, NOT abnormal. Allow the person to talk about them. Encourage them to think of a future time when this might feel less of an issue (like if you're 67 and a 4/4 like me and still reading PubMed articles and critiquing grant applications for AD research panels and thinking--maybe this isn't going to be a problem)
Even better, encourage them to think of active steps they can take when feeling anxious--drawing, exercise, deep breathing, remembering how well you cope with a seizure disorder (your brain is a champ at work-arounds!)
You may even want to think about talking some with a knowledgeable health coach who can listen in a way your family can't right now. You can find some of them on our wiki: ApoE4-Aware Health Coaches
, You may want to talk to your doctor about a trial of an anti-anxiety medication, or a medication that has both some anti-anxiety and anti-depressant qualities like wellbutrin.
And for that big question of how long it takes: It took me about 2 years when I found out at age 62. You don't have to have a "fix-by" date, though--you just need to tell yourself "I have been strong before and I will be able to be strong enough for this".
One last thought: Nobody could accurately diagnose your great-grandmother with Alzheimer's. From my own family history, a woman of that age who might have died in 1960 or earlier, was FAR more likely to have had heart disease that caused vascular dementia. Nobody then thought that blood pressure of 160 over 100 at age 60 was a problem, and nobody thought beef marbled through and through with fat was a problem and nobody thought women had heart attacks until they died from them or strokes or Alzheimer's. You are not your great-grandmother; her fate is not yours.
Be well, and have those good daydreams!