Feelings of Fear for Self?

Chevy_

Hello,

I'm a grandson of my grandmother who has rapidly progressive dementia.  I'm struggling with some feelings of guilt, especially since I just found out she has been transferred over to hospice care.

My grandfather, her husband, died of Parkinson's disease.  While not a memory disorder, I can't help but worry "What if I'm going to get dementia or Parkinson's?"

I understand I shouldn't judge my own emotions.  I still feel like maybe I should go for genetic testing to see what my probability of dementia, Alzheimers, and Parkinson's are.  I already had my DNA tested by Ancestry but not for health markers, so that data is within my toolbox if I choose to get tested.

Why am I feeling this way?  I feel selfish, like I should only be focusing on my grandmother, but these thoughts keep creeping in.  I dare not speak a word of these insecurities to my family, I have a therapist for my own issues I just got hooked up with but I don't see them until my first appointment next Friday.

Advice is welcome and much appreciated.

Thank you for your time,

Chevy

Sjodry

Hi Chevy,

I would first tell you not to feel selfish for having the thoughts you are having related to your grandparents. It is perfectly normal to wonder about whether any of those illnesses might happen in your future. But let’s say you had genetic testing (which I don’t even know if one exists for either of those neurodegenerative diseases) and someone said, yes..there may be a good chance you will have it. Now what? There is nothing preventative to do to stop it from happening. You might spend years worrying instead of enjoying your life. The best that any of us can do is to deal with whatever life brings at the time that it happens. Take good care of your body and health, enjoy your life and your sweet grandmother.

The feelings you are having are perfectly normal..we see our loved ones have a terrible disease and of course we hope we never get it. Don’t feel guilty for feeling that..we all share those feelings. 

You are courageous to join the group and ask about those feelings!

Take care.

Sandy

zauberflote

Chevy, welcome! Sandy has said good things. I'm very glad you've got a therapist, and I hope they are as good as some I have run across. 

I know exactly how you feel.... when I was in my 20's, my grandmother's health began to fail. It was dementia, but she died of COPD from smoking, and heart failure. Fast forward to my mother (her daughter), who died last year at 92, of a swift respiratory infection while very late in dementia. Looking back, her symptoms showed up in her late 70's, but she managed for nearly 10 years to live alone, with much help from my sister. So here I am, 69, with a husband who has an identical family history to mine-- I think about dementia All The Time. I wish I didn't. It's debilitating. You are too young to feel like this. 

Your grandmother a) would not think you were selfish for thinking of yourself and b) would want you to live your life to its fullest. She knows you love her. She has loved you since the day you were born, and when in her sound mind knew well that it is the way of the world for the elder generation to be fade, and to be overtaken by the younger. She would have it no other way. 

Genetic testing has opened such a can of worms, I think. On the one hand, you want to know. On the other hand, your brain tells you "and what would you do with the results?" Living a healthy, joyful, generous life is about the best any of us can do. 

Keep coming  here for support if you feel like you want to vent. Lots of kind and helpful people here. 

PS I like your avatar. I had to look up Despacito! I had high hopes of it being a video game

rzrbaxfan

I think about it too.  I didn't become a father until I was 39, and now I have two little girls.  I do the math in my head and think "if this hits me at age X, how old are my wife and kids going to be".  Mom care has taken a heck of a toll on me, and it hurts to think I might do that to them.  Like you, I don't think I obsess on it...especially to the point of it interfering with things, but it creeps in sometimes.

I'm seeing a therapist as well, but that hasn't helped me with the things I've shared so far, and this is way deeper than those things, so I keep it bottled up.  Can't do anything about it anyway.

I do think it's natural to think about it.  As long as it doesn't deter your focus or trigger depression, you may be ok.

sandwichone123

Chevy,

I think most of us with a parent or grandparent who has/had dementia has these concerns. While you can't change your genes, there are many things you can do in your life to decrease your risk. Take care of yourself, eat right, exercise, all the usual suspects. Remember that heart health is brain health.

Diane