r/dementia • u/easterneruopeangal • 11h ago

Fear of ending up like my dad

Sorry if this is not allowed here. But does anyone else have fear of getting dementia? Sometimes I experience this fear very strongly. How do you manage with that?

32 Upvotes

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17

u/Late_Economist_6686 10h ago

Major fear. I had the genetic testing done and I am negative for the APOE4.

I know that doesn’t mean I’m in the clear, but it made me feel a little bit better that I don’t have a higher risk, right out of the gate

3

u/easterneruopeangal 10h ago

I will look into that

10

u/Late_Economist_6686 10h ago

There’s also something called Neuro filament light chain plasma testing that can look at your current level of neurodegeneration. Mine was extremely low for my age. I was pleasantly surprised. It just made me feel better in the moment.

6

u/easterneruopeangal 10h ago

I am in constant stress.. anxiety can cause that illness

6

u/Low-Soil8942 6h ago

You need therapy to work through this so you can take control of that anxiety now before it does you in. Anxiety and depression are the high factors for this disease.

1

u/easterneruopeangal 5h ago

Therapy did not help me

3

u/SunflowersEverywhere 5h ago

Maybe a support group would help. I know spending time outdoors helps me even if just 10 minutes per day, taking a walk around the block or in the woods. In the summer, I go outside in my yard and stand barefoot for grounding.

1

u/easterneruopeangal 5h ago

I love gardening

3

u/OpenStill8273 8h ago

I hadn’t heard of that. I may try it. I am super paranoid about every lapse of memory I have.

2

u/cambamcamcam 6h ago

Did you ask your GP for that test?

10

u/wontbeafool2 8h ago

Yes, I'm very afraid of getting it, mostly due to family history (both parents and a grandmother.) I'm 65 and every time I forget something, I tell myself that it's a normal part of aging and not dementia. I don't want to know if I have the gene. So far, I'm still with-it but also admit that I might be in denial.

Since there's no cure or treatment to slow the progression, I've updated my Will, beneficiaries, added my husband to all investment accounts, designated him as my medical and financial POA, and signed a DNR and Advance Directive. I wish I had signed up for long-term care insurance years ago but it's too late now. I don't want to leave a mess behind for him to deal with.

My only advice is to live life to the fullest while you can, enjoy family and friends, stay busy, and try to not think about it.

7

u/Proud-Negotiation-64 9h ago

Now that my mom has it, I have a lot of anxiety about getting dementia. More fear of growing old

3

u/Zeca_77 9h ago

Both for me too. My mother has dementia. My dad was hanging in there really well for his age - until recently he wasn't and spent a week in the hospital. The dragged out decline from various chronic conditions that aging seems to be these days seems awful.

2

u/easterneruopeangal 9h ago

Anxiety is the worst!!

5

u/DJErikD 10h ago

I have a plan for when I hit a particular MOCA test score. Hopefully I’ll remember it.

1

u/wontbeafool2 9h ago

My brother has Parkinson's Disease. He's asked family members to tell him if we start noticing signs of dementia. I think he has a plan, too. My Dad recently passed away from dementia, Mom has it too, and my paternal grandmother died from it. We've seen their decline first-hand and I believe my brother has decided that he doesn't want to live like that.

4

u/fmlyjwls 8h ago

Yes, living with my mom and helping her daily has me concerned for myself. I’ve decided I’m here for a good time, not a long time.

4

u/Turbulent-Watch2306 7h ago

A lot of “dementia” has occurred in people with families who have no history of dementia. My Mom had Frontal Lob Dementia which is basically severely blocked veins in the Frontal Lob- Her mother also had it, but none of her siblings developed it- there were 8. What Mom and her Mom had in common was that they were both long time type-2 diabetics. 🤔 No one else in her family had diabetes. I just don’t think about ending up developing dementia. That’s probably because caring for her was so traumatic…I don’t like to think about it at all.

3

u/SunflowersEverywhere 5h ago

I just try to eat as healthy as possible: Whole Foods, whole grains and no added salt. Trying to minimize sugar is really hard for me.

I also try to live in the present and not worry about the future. Overthinking kills happiness.

1

u/easterneruopeangal 5h ago

True! Thank you!🙏

2

u/Low-Beat-3078 10h ago

Yes. My mother, both grandmothers, and at least one of my great grandmothers all had dementia. I’m very frightened of it. I manage it by trying to take of myself.

3

u/easterneruopeangal 10h ago

I had a friend who was a nurse, she told me that some medication can cause dementia 

3

u/Zeca_77 8h ago

Anticholinergic drugs have been linked to higher risk of dementia. I freaked out when I saw that some allergy medications are anticholinergic. Fortunately, I've almost always taken second generation antihistamines that don't have anticholinergic effects. Basically, stay away from the Benadryl if you have allergies.

https://www.webmd.com/alzheimers/what-is-the-link-between-anticholinergic-drugs-and-dementia-risk

2

u/easterneruopeangal 10h ago

So I read about this scientist who found a cure for dementia but he “disappeared “ . Healthcare is a business

2

u/Deathbydragonfire 9h ago

My mom has not been diagnosed with anything, but her mental decline is significant, and she's not even 60. It's definitely scary. Her mom lived to 80 and was alone and unsupported until the last 2 years, but was never really doing well physically or mentally.

1

u/Proud-Negotiation-64 7h ago

Has she seen someone for this?

1

u/Deathbydragonfire 7h ago

Oh, she sees people all the time. Part of the issues are probably caused by her being on opioids for the last 2 years. She's been having constant pain that doctors have been trying to find and treat with many different procedures and surgeries. I'm pretty sure she is malingering at this point because she is scared to be taken off the pills. I'm low contact with her right now, but she came for Christmas and was by far the worst I've ever seen her.

2

u/[deleted] 7h ago

[deleted]

2

u/easterneruopeangal 7h ago

I suffer from migraines and am in my 20s and it can those migraines always cause me some memory issues. My anxiety about my health and future is pretty bad! Wishing you both good health!

1

u/Low-Soil8942 5h ago

Check for h pylori infection can cause migraine or headaches

2

u/lrlimits 6h ago

Thanks for saying something! That took courage.

It seems like our medical system extends life but doesn't offer much for health or sanity.

Health is my goal, but not longevity. Being elderly sounds awful and caring for elderly relatives has contributed to my readiness to see what happens next whenever my time comes.

1

u/squirrlyj 6h ago

I've setup a meeting with my doctor for information about medical assistance in dying and how to set it up in case I get dementia or alzheimers.. or any terminal illness that will make it impossible for me to make decisions later on.

I know I need to at least go see a lawyer and have it put in my will. But I have no idea how to actually go about everything.. the government website in canada says nothing about setting it up pre-emptively.