New here- very worried about genetic link

Girlmom

Hello

I am new to this forum, this topic and this new life with my mom. I only have a few minutes to write since I have young children so I will try and be brief! 

After years of wondering about my mom's cognitive decline she is finally being seen by Mayo. Her brain scan and spinal are next month. 

We have tried to talk to her and my dad about this for years and she is now 67. I am 39. The situation is finally serious enough to them. My mom is very private but now she has told us that many of her dad's sisters had Alzheimer's at an earlier age. 

My family is very close. Besides dealing with the extremely painful thoughts about the future with my mom-- I admit I am very nervous about a possible genetic link. From my reading online it seems that developing AZ genetically is rare but if it is found to be genetic there is a 50%chance of passing it on. I have always been a "scatterbrain" since childhood- very busy with 3 young kids and sometimes forget things-- and not great organizational skills. I have always said I am the opposite of type A- arty, messy, creative and unorganized My mom is that way too. Is being forgetful linked to developing this? I feel like I am now worrying every time I am having to reach for a word in a sentence or double book myself with an appointment. I have been this way my whole life though. I am swinging back and forth between tears and fears over my mom and that grief to worrying about my own potential for developing this young. 

Does anyone have experience or advice? I believe I will be on this forum for many questions in the future. Thank you. 

JDancer

Welcome. I hope you find this forum as helpful as I have. So much support and good advice.

I don't have an answer to your question, but I do have a suggestion. Before your mother's appointment (to discuss test results) make a list of questions to ask the doctor. I know this is very basic, but a lot of people don't do this. You (or whoever goes with your mother) will likely be overwhelmed with information, it's so easy to overlook concerns. 

  

MN Chickadee

I know exactly what you mean. I have young kids and am scatterbrained, hopefully from being too busy, never getting enough sleep , juggling too many lives and details. Every time I forget a detail, or the dreaded "what did I come down to the basement to retrieve" scenario I do wonder. I go back and forth on whether I would want to know if someone could tell me I will get Alz. For now I have settled on two things - First, other moms tell me my memory is totally normal, their capacity for working memory and incidents like that are no better despite no dementia in the family. Par for the course. And also that I just have to hope my genes are different. Half of mine are diluted by a different/no Alz family line on my father's side. However I will be taking precautions at an early age to protect my family. Making a detailed health care directive, POA and legal documents in order, make my wishes crystal clear to my family. I don't want to do genetic testing, both for legal reasons and I'm just scared. So all I can do is plow on I guess. And hope for a decent treatment option in the next 20 years.

Stuck in the middle

I've read about the genetic link in EOAD, but I don't recall any way to tell if you have the gene(s).  I'm pretty sure there is no link between being absent-minded and AD.  I've been dreamy my whole life, while my wife majored in accounting and knew how many green beans were left over from dinner before she developed AD.  So, it didn't work out that way for us.

Girlmom

Thank you for your reply. My parents are very private and have not wanted me or my brother at any appointments yet. I will pass this along to my dad. Thanks!

Girlmom

Yes, this sounds just like me. I know I am mentally sound now, just trying to cope with overly busy modern life! Today I had a classroom activity in one school as the parent helper, Easter treats to make and a party to give at a preschool, gifts to buy for seperate bday parties tomorrow, a painter to meet at my house and oversee throughout the day, softball practice and game for the eldest and a fundraiser to attend for our parish. This is just normal life for me- I attend it all and rarely miss anything but when I forget something and rush atvthe last minute I am so hard on myself. I am not great with technology and I hate having to arrange things on websites instead of by calling. 

I am looking into genetic testing. I am not sure what legal issues there are? That sounds concerning if you mean your data can be used against you. Do you mean for insurance? 

I am also so overwhelmed with grief and stress for my mom that the stress is making me even more scattered and forgetful which is feeding my fears for my own future health. 

I am seeing a therapist in a few weeks and hopefully can work on coping strategies or something. 

Thanks for your reply. It makes me feel not so alone. 

May flowers

DH (54) is concerned about a genetic link. Both of my DH’s grandfathers and dad had/have dementia. He is working through a book called “The End of Alzheimers Program” and plans to visit a functional medicine MD who is trained in this program. If nothing else, he will get a baseline cognitive test which I have been wanting him to do.

He has also been on a ketogenic diet for four years that has done wonders for him in overall health and cognition. He sees a regular MD for blood work every 6 months and all his numbers are good. My son with epilepsy also does keto, with thr blessing of his neurologist, and he has been able to cut back his medication to almost nothing. 

I am not advocating this for anyone else, just relaying what he is doing to be proactive. It is all mostly diet and exercise related and can’t hurt. His family doctor is pleased with his health and tells him to keep doing what he’s doing.

harshedbuzz

Girlmom-

I understand your concern about a genetic link. 

There is genetic testing available around Alzheimer's- specifically EO. There's a marker that can be tested for- if you have it than your risk is considerably higher. But not all individuals with the marker will get Alzheimer's and those who don't have it still have the "normal" risk of the general population. Basically, the results of the test are not a definitive yes or no but a nuanced maybe. 

Alzheimer's Disease Genetics Fact Sheet | National Institute on Aging (nih.gov)

Pre-existing conditions do not preclude health insurance since 2014 under the Patient Protection and Affordable Care Act (aka Obamacare). This protection does not extend to life insurance. 

That said, the description of your day sounds exhausting mentally. Some people thrive on that level of activity and others find it stressful. 

Sometimes "scatterbrained" is undiagnosed ADHD and if you're seeing a therapist soon, it may be something to explore. This does run in families. It runs in my family in spades. My mom clearly had it as a child (per her own stories and family legend) and was formally diagnosed at 79 when we were going through getting dad's diagnosis and setting up care and a new home base for them. My son and at least one of my nieces also have ADHD. DS was picked up by age 7 in part because it was co-occurring with ASD and he was mildly disruptive in school. My niece was well-behaved and a good student who was able to create go-around strategies for herself that served her pretty well until grad school. Both DS and DN are medicated for their ADHD; mom takes something off-label which isn't particularly effective IMO but she's not healthy enough for stimulants which were. (Mom also has narcolepsy, so she spent much of her 30s-60s on stimulant meds which did help her ADHD symptoms)

ADHD wasn't related to dementia in my family. It was my organized and controlling dad who developed mixed dementia. My husband jokes that my mom would get a late dementia diagnosis because her baseline is "flaky"- how could you tell. I took mom to pick up new hearing aids yesterday because she lost one. She "knows" it takes almost 30 minutes to get there and yet when I arrived, I found her wearing trousers under her Christmas-themed sleep shirt lamenting her pale skin color. I hustled her along best I could and we left 8 minutes late. It would have been 7 but she decided she'd go to her mailbox first. This irks because her mail is all junk and she'll leave it in my car and I'll have to deal with it. Half way down the street I reminded her to put on her seatbelt and at the stop sign I asked if she had her "loaner" hearing aids with her because they're clearly not in. NO. She forgot them. Again. We did this circle the block routine not 10 days ago when we went to order the new ones. 

Good luck with your mom's upcoming appointments and your own therapy.

HB

MN Chickadee

Girlmom wrote:

Yes, this sounds just like me. I know I am mentally sound now, just trying to cope with overly busy modern life! Today I had a classroom activity in one school as the parent helper, Easter treats to make and a party to give at a preschool, gifts to buy for seperate bday parties tomorrow, a painter to meet at my house and oversee throughout the day, softball practice and game for the eldest and a fundraiser to attend for our parish. This is just normal life for me- I attend it all and rarely miss anything but when I forget something and rush atvthe last minute I am so hard on myself. I am not great with technology and I hate having to arrange things on websites instead of by calling. 

I am looking into genetic testing. I am not sure what legal issues there are? That sounds concerning if you mean your data can be used against you. Do you mean for insurance? 

I am also so overwhelmed with grief and stress for my mom that the stress is making me even more scattered and forgetful which is feeding my fears for my own future health. 

I am seeing a therapist in a few weeks and hopefully can work on coping strategies or something. 

Thanks for your reply. It makes me feel not so alone. 

Yes, seeing a therapist is great. It helped me a lot when I was first coming to terms with my mother's condition and grieving very much. 

I don't even totally know what I mean by legal implications. I just know people had no idea some of the legal stuff that would come up eventually with genetic testing like 23 and Me, so who knows where it can go in the years to come. I also would assume I would not be able to buy long term care insurance, or would have to pay more or something. And those with dementia are the folks most likely to need LTC. 

mommyandme (m&m)

Mom Brain… is a thing. Forgetful etc… 

I am also concerned about getting dementia… don’t want it! I also don’t want to spend my time worrying about it. Life is too short and this SUCKS! 

Iris L.

Girlmom wrote:

I am seeing a therapist in a few weeks and hopefully can work on coping strategies or something. 

My suggestion is to read through several of these threads and learn coping strategies from the members that are more aligned with caregiving a PWD.  Learn about anosognosia and also Validation therapy.  Read threads of other members with small children at home.

Iris L.

Girlmom

Hi! Thank you for the reply. I actually bought this book this week. I was going to read it and see if my parents would be interested in pursuing these life changes. I am the type who believes it can't hurt to eat healthy and exercise  

Have you read or heard of anyone experiencing the type of improvements described in the book? 

Girlmom

Thank you for the reply! 

My mother in law mentioned that she believes that I am undiagnosed inattentive ADHD. She has been a school principal for decades and had mentioned it to me before but I guess it is hard to take that kind of observation from you MIL  

Life is very busy in my world, today was not as chaotic as yesterday but with 3 kiddos - in multiple sports- and being active at our parish and schools- life can become overwhelming. I need busyness but I do find myself having a moment here and there where the stress of fitting it together overtakes me. 

Once I have a minute, I am going to get an evaluation for ADHD. My regular therapist is not in that field. 

Thank you so much for taking the time to write all of that out

Girlmom

Thank you! I will read through for coping strategies !! Thank you for the tip.

GothicGremlin

Hi Girlmom -

I don't know if you saw it but LicketyGlitz posted a thread called Monster in the Mind https://www.alzconnected.org/discussion.aspx?tid=2147560570&g=posts&t=2147560570

It has a link to a documentary on Alzheimer's that includes discussions on early onset and discussions on those with the APOE gene.  I watched the documentary and it was really informative. I think you might find it helpful.

Putting on my privacy advocate hat -- who can get access to information generated by genetic tests are not as well-regulated as you might think considering the privacy risks and other legal risks.  I wouldn't do it, myself. I stay away from genealogy sites too. 

Then again, when my sister was diagnosed with early onset Alzheimer's, I didn't try to talk her out of getting a genetic test done. She really wanted to get that test. Getting the results granted her a bit of peace around the diagnosis, and that was much more important than my fear about which databases her very personally identifiable information was going to show up in.

aod326

Hi Girlmom - so much for you to deal with right now. I hope my comment isn't insensitive - if it is, I truly apologize. My DH had EO, passing away at 60. We had no idea what was causing his neurological decline, to the point that the neurologist was "certain" it wasn't Alz. (Long story.) I decided to have a brain autopsy when he died, for the sake of his two kids. Turned out he had Alz and Lewy Bodies. From the brain tissue they were able to definitively say this was not genetic. The neurologist said his kids had a very slightly elevated risk compared to the general population.

To be honest, I'm not sure I'd want to know - getting any serious illness seems like a bit of a crapshoot. Live your healthiest best life! Good luck.