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Hello everyone,



Since my granddaughter's diagnosis, in my spare time (ha, not much of that) I decided to research my family history so I joined Ancestry.Com. I've gotten hooked on the site as it has so much information so that part has been enjoyable. I mainly joined because I wanted to look for evidence in my family and in SIL's family of having schizophrenia or bipolar disorder.



Oddly enough I haven't found any schizophrenia or bipolar disorder. If it's there, it wasn't noted on death records.



However, I did notice something that has me very disturbed. I know my dad has dementia, but his dad had it too along with several other things noted on his death cert. What I wasn't aware of is that so many people in Dad's family also had Alzheimer's/dementia, and that several lived to very advanced ages. I'm seeing lots that were as old as 95 - 100 years old which is incredible for the generations in the early part of the 20th century.



It looks like the longer they lived, the more they got dementia.



On my mom's side, her mom lived to 105 with no dementia. Most of my grandmother's relatives died at younger ages and also no mention of dementia.



My conclusion is that the very old are being kept alive on so many new medications, pacemakers, defibrillators, transfusions, and other procedures that is has become much more likely that dementia shows up.



DH and I have all our legal paperwork up to date. And I know about VSED. But I still feel intense anxiety about this. It is very troubling.



I'm curious to know if anyone else has noticed this in their families.

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"My conclusion is that the very old are being kept alive on so many new medications, pacemakers, defibrillators, transfusions, and other procedures that is has become much more likely that dementia shows up."

I agree 100% with this conclusion and will add that some medications given to people can in fact cause dementia too.

And you haven't read the posts where they want to put a person with full on dementia on dialysis or treat for cancer. There is some pretty messed up stuff that is going on in health care. Family members need to start saying no and not just doing treatments because they are offered.
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The percentage of people with dementia goes up in each decade so it's only natural that the longer your ancestors lived the greater their chances of encountering it. Helping my mom in her final decade of life was heartbreaking but had she died when we all expected her to (despite several chronic conditions she lived to be 99) we never would have thought dementia was something to be concerned about. Even then it's the modifiable risk factors that are more predictive of dementia than heredity.
https://www.canada.ca/en/public-health/services/diseases/dementia/risk-factors-prevention.html?utm_campaign=hc-sc-dementia-risk-23-24&utm_medium=sem&utm_source=ggl&utm_content=ad-text-en&utm_term=is%20dementia%20inherited&adv=2324-457500&id_campaign=20698440618&id_source=154306433985&id_content=678279376699&gad_source=1&gclsrc=ds
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Log off of Ancestry and unsubscribe. Opening up Pandoras Box seldom gives us the fairy tale stories we were hoping for in the first place. Anything that brings you anxiety must be discontinued. Not to mention, looking up family history to figure out your granddaughters dx is useless. What good will it do to find out mental illness was or was not prevalent in your family history????? Just focus on the NOW. That's my suggestion, as someone who's learning to do just that. Pick up a copy of Eckhart Tolle's The Power of Now. It tends to be life changing.
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"Not to mention, looking up family history to figure out your granddaughters dx is useless. What good will it do to find out mental illness was or was not prevalent in your family history?"

I totally agree Lea. It's not going to change the diagnosis or the long road ahead the granddaughter and family have.

I hope granddaughter will take her meds and get the help she needs and not be one of the many who fights this and destroys her life and her families lives in the process as they try and save and help her.

Mental illness I think is far worse than cancer. It is an insidious defect of the brain that brings many heartbreaking trials for all who love the person who has it and more so for the person themselves.
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Hi Laura, I will finish you post little later, cooking dinner but I wanted to tell you I read that most bi polar, schizophrenia comes from the paternal side. Not sure if it's true. I've learned to not always believe what I read.

But I did as you, found out my father in laws mother had issues.
Most likely you won't find much because mental health was so poor back then
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As far as the history of dementia Its in every family, I wouldnt worry about it. Everyone that gets really old pretty much has some demtia.

I know someone that pretty much everyone on her father's side gets Alzheimer's, before 70. Except her dad that died in his 50s. That would make me a bit nervous
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This is very interesting. You know, if you feel troubled and are anxious you perhaps should get some counseling. We cannot predict the future, all we can do is try to live better than our ancestors did. Eat healthier, stay mentally and physically active, pay attention to your health(inflammation, toxicities, depression, intolerance etc..) I think the correlation between diabetes, high blood pressure and dementia and depression or toxicities from the chemicals we breath, pesticides in foods, polluted waters, and drugs(all kinds) are driving dementia up. It's a cocktail for disaster.

What about links between COVID 19 and the increased risk of exacerbation of neurodegenerative disorders for older adults as a long COVID effect. Also, vaccines are not free of blame. Although, I am not opposed to them, I def experienced a side effect from the COVID vax. As I came to find out many women experienced endocrine disruption after the vaccine, I did not know it then, but it's all coming to light now. This has implications because hormones do affect our brain health. There are long term studies now being conducted following people who had severe COVID to see if they develop long neuro side effects.

As far as schizophrenia from what I understand is not an old persons disease. You don't just wake up at 70+ years with schizophrenia, it's diagnose at young ages. So perhaps that why you didn't see it in the elders in your family.

I have always wanted to sign up for Ancestry, I think i will take a look.
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Do consider joining FEN. Final Exit Network. Lots of good information ongoing and well worth knowing.

Yes, between medical devices and medications we are living much much much longer, and I suspect much of that life is a misery to both us and to our entire families.

Do know that many things are up to you as far as what medical help you wish to avail yourself of. It is worth thinking about.
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LauraL271, welcome to Ancestry, I've been on there almost daily since 2017 and it is so fascinating. The people "I meet" who have departed. Inlaws and outlaws. Scientists and bootleggers.

I also noticed how many in my family tree had lived into their 90's and 100's in the 19th and 20th centuries. But I also noticed these were farmers who ate healthy and lot of exercise working the farm. The next generation also lived long farming except for those who moved into the cities at a young age.

Chances are you won't see schizophrenia or bipolar on any death certificates as it's not life-threatening.

As for memory lost, the word "senile" was used in place of dementia back then. My parents didn't get dementia until their final year in their mid to late 90's. Yet both my parent's parents didn't have it. One grandparent of my Dad had a mild case. Don't know if he really had it or not, he use to "get lost" when out walking in their Mayberry type town, but some of us believe he wanted to get away from the women-folk gossiping :)

I know you are concerned about other departed family members getting dementia, it could have happened very late in life. And sometimes forgetfulness is just normal, but the younger generation tends to over-react.

Recently my step-daughter wanted hubs and I to move closer to them, or to move into assisted living near them. Say what? We aren't THAT old, only 77 years old, we have many more years living independently. Hubs still works. I only retired 3 years ago but would have kept working if my boss hadn't passed [covid] and the business closed its doors. See what I mean by over-reacting by younger folks who think we are ancient. Just because I hate using a cell-phone doesn't mean I am ready for senior living :P
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You can't change genetics and worrying about it is not good for you and will not change things. Just eat well, drink modestly, exercise, keep ur weight down. Do those mind games. You just live ur life.
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There are a good number of things you can do to increase your odds of not getting dementia. Look into diet and/or diet changes to promote a healthy brain, exercise consistently, decrease stress ( regular practice of meditation, yoga, etc.). I read a book years back, The Alzheimer's Prevention Food Guide, and it's specific and science backed, a good start. There are supplements, too, which might help. You have to research stuff, but you will find some answers.
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You can't fight fate if it is to be it is to be. However, there are things you can do to prevent dementia. For example, don't take medications like statins that can cause dementia or other medications that can cause dementia. Keep your blood pressure down and eat healthy fats (they're good for your brain).
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My grandmother lived to 93 . She had Alzheimer’s , Her daughter ( my mother ) had vascular dementia , died at 88 . My sister is 69 with vascular dementia . I’m assuming I will get some form. Already told my kids to expect it and not to feel guilty about placing me , no matter what I say when I’m not able to understand that there is something wrong with me.
I’m in the process of getting things in order . And yes it gives me anxiety , because I don’t want my kids to go through what I went through with my mother. I hope to be cooperative .
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waytomisery, did your Dad or his Dad have any problems with Alzheimer's? If not, there is always a chance you could have inherited more from your Dad's side of the family than your Mom's.
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freqflyer,

Neither my father nor my grandfather had dementia .
However , my mother’s doctor did say that women who worry a lot tend to get it. I have always been a worrier .
If a worry goes away, I will always find the next thing to worry about. Worry should be my middle name. I am always waiting for the next shoe to drop . It comes from having a narcissist for a mother who groomed me to be her caregiver since I was 10 years old .
The doctor who diagnosed my mother was very nice. After speaking with my mother , she spoke to me alone. Asked me what my mother was like before dementia including when I was a child . I told her. The doctor told me my mother is a narcissist and that my mother said such awful things to her about me . I asked the doctor what she said. The doctor would not tell me. The doctor said I did not need to know and that I could not be her caregiver anymore and that Mom needed to be placed in a facility .
The doctor asked me if my mother was a worrier as well as a depressed person with a personality disorder . I said yes . That’s when the doctor told me that worriers and chronically depressed women tend to get dementia as well as those with personality disorders .
I do not have a personality disorder . I am a worrier and do have chronic anxiety since being caregiver to both my parents . I did have depression during caregiving and other times . It was always related to dealing with my mother . Then after she died I felt guilty for feeling relieved .
Both my parents are dead now . Dad died first from cancer at 88 years old .
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Personally, sometimes, I think life is a crap shoot. My younger brother was diagnosed with Alzheimer’s disease and he is only 60 years old.

I do find genetics and family history to be fascinating. I have worked on our family tree for years.

My brother has always been active and is very well educated, (PhD), extremely sharp mind. So much for keeping our minds busy! So much for going to the gym with a personal trainer! He cooks extremely well and ate quality food, is not overweight. He does have high blood pressure and diabetes which runs in our family. He also has heart disease and had a stroke. Also in our family.

Yada, yada, yada…who knows? I believe in science and hopefully research will help us understand these diseases and help us to prevent them and find cures.
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waytomisery, that doctor who says "worrying tends to cause dementia" then everyone would have dementia. I don't know one person who doesn't worry about something.

Dementia is caused by plaque in the brain. Worrying doesn't cause it. Cholesterol builds up causes plaque.
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freqflyer,

I think the doctor phrased it more as she noticed that people with dementia were often excessive worriers . Not necessarily that is causes it . Just like people with chronic depression are noted to be at a higher risk for dementia than others . I don’t think they even know why that is either . Like you said it’s caused by problems with plaque and other vascular issues in the brain .

But I understand what you are saying .
I hope I don’t get it , but my biggest fear is being horribly uncooperative with basic ADL’s and abusive like my mother . I want to be that pleasant old lady no matter what ailments I get .
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waytomisery, I know what you mean when you say you want to be that pleasant older lady. I know for myself, I try not to complain about aches and pains [hubs does enough of that], and try to find humor in things. My Dad was so easy going, loved humor and such a sweetheart, the caregivers all loved him.

Same with my late ex-mother-in-law, great sense of humor. But then again, I wasn't living close to her so I really don't know what her daughter was going through taking care of her. But xMIL was so much fun on the phone, we were great friends for 20 yrs after the divorce :)
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There are so many wonderful comments from all of you here. Thank you for reminding me that I need to concentrate on the fact that I can do my best to protect myself. Eat right, stay active, spend as much time as possible with my spouse who is the love of my life and my soft place to fall, and continue talking to my counselor.

It helps to have reminders from all of you that I can take control of living so long that I wind up like a lot of my dad's relatives. And I have a lot of instructions in my advanced directive that my husband and children know to follow in case I eventually am diagnosed with dementia.

It was quite upsetting to see so many death records that mentioned senility, which I knew was really dementia, and to see how long they lived. Some public family trees had stories that others had written such as "she took her mother and kept her until she died," which I was very sad to see. That was my great-great-grandmother who lived with her daughter, who had been widowed at the age of 52. Some very sad stories.

But there were inspiring stories that I have found, too, such as brave soldiers and people who had large and loving families. Hardly any divorces. A lot of salt-of-the-earth people.

I will read The Power of Now, which sounds like an excellent way to live. And I will join Final Exit Network.

I want to be the pleasant older lady in my family, as some of you mentioned. I certainly don't want to be like my own mom - and she has no dementia that I know of. Just meanness and entitlement.

A lot to think about.
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When I had Non Hodgkins Lymphoma, I got a call from my YS. She was kind of frantic and I THOUGHT she was calling because she was upset about me.

Nope, she was terrified it was genetic and wanted to know how I 'got it'.

After the initial 'blow' of not caring about me, but instead worrying about herself, I told her that nobody in the family on either side had had it. Totally random.

Some things are genetic--many are simply the crapshoot of life.

If you live long enough, you will probably get some kind of cancer. Both grandmothers had breast cancer in their 90's. Both had some nodes removed and that was that.

Al we can do is avoid the things we know cause health issues. My SIL is a GI doc and he says "If you do not smoke, do not drink alcohol and maintain a moderately active lifestyle, you'll never experience 90% of the diseases that people fear so greatly."
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At times, there is no rhyme or reason when it comes to diseases. I know vegetarians and vegans, non drinkers and smokers, who exercised regularly with no family history of cancer and they got cancer and died.

Then, there is the flip side as well. People who smoked and drank all of their lives and lived into their 90’s or 100! I am NOT suggesting that anyone should smoke or drink on a regular basis.

Same thing applies to eating well. Some people eat tons of butter and sugar, they don’t get sick and others eat healthy and do get sick. It just seems like it is luck of the draw sometimes.
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One thing I noticed those who lived to be in their 90's and 100's pretty much ate organic. And that was the building block that helped them through eating highly processed foods. And probably helped them if they were a life time smoker, etc.
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Could be, FF

I certainly have longevity in my family. Honestly, I don’t want to live that long! Who can afford to live that long? LOL 😝
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sp1969: I'm among the very old (87) and I couldn't agree more! I plan to say NO to invasive procedures, tests or treatments unless they are strictly necessary to improve my comfort level and quality (not quantity) of life. My healthcare directive and POLST say that in writing. I recognize that I am old. I no longer have much interest in "miracle cures" unless they erase all the major infirmities of old age. Yeah, like that's going to happen. . .
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You have ‘intense anxiety’ because this was how they died? It’s a bit late to change what happened to them, but you really need to do something about your own ‘intense anxiety’. It won’t be doing you any good at all.
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My DH has said to drug him if he gets uncooperative.
I've said I will.

I'd like to take a cruise. Forget to get back on the ship after an island daytrip & just sit on a beach. Probably get carted off to a hospital.. that'd be ok. Guess I could VSED anywhere if I had the brain cells left to choose to. Leave instructions so not to burden the kids with decisions.

My Aunt said if she got dementia well she probably wouldn't even know, so why worry. If her brain wore out before her body, well, so be it.

C'est La vie
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I'm the OP. I wanted to let you all know that my intense anxiety is way down now. I wrote the post a few hours after discovering the long list of relatives who lived so long with "senility" on their death certificates.

I'm just going to enjoy life every day and try not to borrow trouble. Easier said than done, but I'm working at it.

My granddaughter's illness has really affected all of us - her sweet parents most of all. My husband I will have her with us tonight and tomorrow so that DD and SIL can get a break.
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