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As I see my mom sitting in smelly clothes, matted hair, poop encrusted feet and insisting she "took a bath" this morning, there's no way I'm inflicting all this on my kids. If I help her with hygiene, she says "I hurt her"...so I don't fight these battles daily.


The thing is, my grandpa was very healthy and a respected man in his town (in India), was a headmaster in school, walked daily, did yoga, controlled his diabetes and yet when he died, we are all secretly relieved since he lived the nightmares of dementia -- constantly hungry, peeing everywhere, not sleeping thru the night etc. When I look back, I'm so stunned and sad at the way his life ended.


My mom also became very forgetful around age 83 and I had to get her from India to live with me here. She was in a senior community there but there was no-one to check in on her daily and it was not a memory care. I see her going my grandpa's way, foraging for food, generally soiling herself. (Btw, I had posted here about her diarrhea after the 2nd dose of covid vaccine). Mom of course, was nowhere near active and engaged like my grandpa. In her youth, she was just interested in Bollywood gossip and sitting around. This trait is really annoying because now she will sit in the family room all day and will go to her room only if I "yell" at her.


Will I be the same way in my 80s? My husband and I will of course move into a senior facility etc etc but how do I prepare myself for the chance of being like my grandpa and mom? I'm 55, in good health so far, work in a school, try to volunteer and not let my mind shrivel up. But lately, I worry a lot that none of this will help. Should I get tested to see if I carry any gene for dementia??

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There is no sure fire way to determine if you will get dementia or one of the progressive diseases that your g'pa and mom had. There are no genes related to dementia because dementia only refers to symptoms. However, there are genes related to the diseases that cause dementia. There are risk genes and deterministic genes. Risk genes are those that increase your chances of getting AD, for example. Deterministic genes almost guarantee you will acquire EOAD and are very rare. The gene most linked to AD is APOE4 which may or may not have been passed to you from your parents. Having a single APOE4 gene from a parent increases your chances of acquiring AD. Having an APOE4 gene from each parent further increases your odds of getting AD but, by no means, is it guaranteed.
Not everyone who has one or even two APOE4 genes develops AD. And the disease occurs in many people who don't even have an APOE4 gene, However, you may not have acquired any APOE4 gene. Other APOE genes that may have been passed to you are 2 and 3, which are not risk genes for AD. In fact APOE2 seems to reduce the risk of AD.

Getting tested for AD genes is a personal choice. There are pros and cons about getting tested. If you have a risk gene, how will you feel? Would you be concerned that every time you have a memory slip up that it is a sign of dementia? Do you already feel that way without being tested? On the other hand, knowing you have the gene will allow you to start planning for the future like creating POAs, whether you ever acquire AD or not. On the flip side, having these results in your medical record may prevent you from getting disability or long term care insurance.

So you see, having genetic test results doesn't guarantee you'll get AD, nor does it guarantee you won't.

Most clinicians advise against getting tested for the genes until you see dementia symptoms. Rather than you making that decision alone, schedule an appt with a genetic counselor to help you decide.
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wearynow Mar 2021
Thank you so much for this informative answer. I did not know that having the tests in my medical record might not get me disability!
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My mother ate healthy, whole foods her entire life, didn't drink or smoke, walked daily, used her mind, etc., and is suffering from vascular dementia since she was in her 80's. She's 94 now, wheelchair bound, living in Memory Care at $6500 a month and running of money very soon now. Says she wants to die daily, when she isn't ranting about gibberish that makes no sense.

Dementia knows no 'education levels' or 'health kicks' or anything, really..........it affects whoever it affects. In fact, dementia has affected my mother's entire family, for the most part, probably b/c they all live to be in their mid to late 90's. THAT is more than likely 'why' they develop AD and or dementia more than anything, b/c they live too long.

I refer to my mother's family b/c we do not share the same genes. My biological family all died before they reached 60 and guess what? None of them had dementia.

My plan is not to worry about getting AD or dementia, or getting tested for it, either. But rather to have a specific living will put in place that discusses what to DO if afflicted with dementia or AD. Here in Colorado we have assisted suicide and that's MY wish for myself. Not to prolong my life in any way, shape or form, but to END it while I'm still in possession of enough of my senses to do so. No Memory Care, no burdening my children with diapers and gibberish, none of it. Not for me, my DH or my children. I will bow out gracefully if and when the time should come.
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wearynow Mar 2021
You are right and I guess AD, dementia is totally random...because some of my friends' parents are 96 and still mostly sharp & somewhat independent and not soiling themselves etc. I hope I take after Betty White and go dancing into my 90s:-)).
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Hi! Let me give it to you straight: When dementia begins after the age of about 60, it is NOT hereditary. Only early onset dementia (before the age of 55) MIGHT be influenced by hereditary. You can be tested for genes, but even if you have certain genes that does NOT mean you will get dementia.

Live life with wisdom--exercise, eat sensibly, care for yourself and others. My wife is 12 years into Alzheimer's, confined to bed at home for the last two and a half years, but still smiling a lot, friendly and a loving person. We are all unique persons. I'm sorry that dementia has impacted your family so greatly, but that does NOT mean it will get its tentacles on you.

Love and Prayer
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There is no particular gene for dementia, and dementia comes in many types. Keep up with your own medical care. As you get older, some basic dementia screening tools become part of your regular medical appointments. If you observe worrying behaviors in yourself, ask your doctor for advice or do some research through organizations like the Alzheimer's Org. They have wonderful information about all kinds of dementia and can guide you on where to look for answers.
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Epigenetics is the term used to describe what turns on and off gene expression. Lifestyle is a big driver of epigenetics. Do you eat the same way your grandpa and mom ate? Do you have as much physical activity as they had? Do you have interests that mentally and/or spiritually stimulate you, which perhaps they didn't have? Do you meditate, or at least relax to soothing music or nature sounds?

Our chances of avoiding what family members have suffered, can improve dramatically if our lifestyle is better.
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This is info from Alzheimer’s website...
”the chances of developing dementia rise significantly as we get older. Above the age of 65, a person's risk of developing Alzheimer's disease or vascular dementia doubles roughly every 5 years. It is estimated that dementia affects one in 14 people over 65 and one in six over 80.” Sometimes I wonder if we develop dementia no matter what we do? I’m not sure. Strokes run in my family so does vascular dementia so I personally feel I don’t have any hope 😆. But like they say, try to prevent it by eating healthy and keep active.
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My Mom has dementia, my Dad is still cognizant, but forgetful and has trouble getting things done. Dementia affected my Mom's oldest sister, mother and grandfather. Am I concerned? Yes. But, I can't predict the future, and much of it is outside of my control. However, I do know that diet and exercise play a role in reducing the risk. Exercise helps me with stress in addition to being important for brain health.
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You can test for presence of the ALZ gene, but why stress yourself out for no guarantee?

First, we must survive to old age in the first place. After that, there are hundreds of ways we can get dementia.

“Dementia” is a broad “catch all” diagnosis used to describe patients with any type of confusion or lack of capacity — there are a multitude of causes— from a head injury to renal failure. So if you learn that you don’t have the ALZ gene, there is still no guarantee.

What can you do? Look both ways before crossing the street. Eat well. Take your medicine, wear a seatbelt and bike helmet.

None of us get to choose our problems, just how we address them and cope with those things we cannot change.

I may not be the only person to write this, but I would give a million bucks to get the encrusted poop off my mom’s foot if I could get one of her hugs. Or give her one of mine. Or to see her laugh or smile or even to hold her her hand through hospice on the hardest of days.

So, chin up! I know this isn’t what you were expecting when your mom came here, but someday these will be “the good old days.” Don’t forget to enjoy life. Try your best not to feel resentful. Don’t neglect other relationships.

If you can’t live with your mom, there are many residential options.

I’m sure you are working to be gentle with your mom and it is emotionally painful when she says you are hurting her. There may really be something else hurting her, though. One night my mom was crying out that she was surely dying and she was in intense pain and I eventually discovered she had a very painful (and not readily visible) ingrown toenail.

if you want her to stay with you, a geriatric psychiatrist may be able to help with medications to ease her stress so she will feel more cooperative with healthcare providers. She is going through a crisis too.
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I know this is a real concern for you after going through this with loved ones. 10-20-30 years from now the medical science might have solutions to this. There are so many things, medical and otherwise that can take our lives or make them so very difficult at any age. I feel it is best to live in the moment of the best in your life now.
My feeling is adjust to needs of life as it comes along. My heart goes out to you.
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You know the serenity prayer? Easier said than done, but we can't control everything as much as we would like to. I pray it doesn't happen to me as well, no doubt like so many of us here. I am hard pressed to come up with a good reason to go to the expense and trouble of testing. To what end? If it says no, I'm sure it is no guarantee, if it says yes are you going to spend these good years you have left in a state of worry and depression. Better you spend the time on not stressing, keeping your BP low, and doing the other good things that make for a healthy person...eat well and healthy, exercise your brain in creative ways, love and do good for others...Hopefully that fends off the devil of dementia and if it shows it's ugly head, at least you will have hopefully generated a circle of a cushion of people who will care for and about you and protect you as best they can. I can really relate as my grandmother had it before it was a popular diagnosis. And my mom has it. BUT she had two brothers and NEITHER HAD IT. My one uncle I adored died from a serious heart attack that I believe was brought on by his fear of an upcoming prostate surgery, and the other uncle had a multitude of health issues for decades and was impacted by a stroke in addition to diabetes and peripheral neuropathy and other things...We're gonna be OKAY. Believe that. Be kind to yourself.
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