RSS Feed Print
Brother diagnosed with EOD, I (barely) survive in dread...
MindfulViv
Posted: Tuesday, March 12, 2019 6:25 AM
Joined: 3/12/2019
Posts: 7


Hello everybody,

I'm Viv. My brother was diagnosed last year (he's 54) with Early Onset Dementia. Until the diagnosis we were all about "he's just stressed", "stress can give you memory issues" and so on. At the hospital they said that in his case Early Onset Dementia has been slowly eroding his mind and it's been an extremely long process. They said it could have started 10 years ago. Or even 20 years ago. 

He's the one I thought I could rely on, since I'm 18 years younger than he. He was my handsome brother. My beacon. My world fell apart. 

Now there's something that I can't seem to deal with. The fear "it's coming for me, too". Every time I forget about something or I miss a word, I think "here it comes". 

Some people told me to do some therapy, but I'm a cognitive-behavioral specialist myself and I know... almost everything about it. I try to be high-functioning all the time, but at the end of the day I feel exhausted.

Don't do the DNA test, someone says: it doesn't prove anything and you'll only live in more anxiety.

It won't happen to you, someone says: you've always used your brain so much... it's well trained and healthy.

I feel paranoid, can't enjoy my life. I'm becoming clingy and frightened to be left if I get the diagnosis. I'm scared to have kids and sentence them to synaptic death. I just try to be a better version of myself on a daily basis and help people as much as I can. I hope that throwing kindness seeds all over the world will help people remember me as a nice person when there won't be anything nice in me anymore.

Sorry to tell this to you... but I've never felt understood (not here in Italy at least).

Take care and take my love,

Viv


Iris L.
Posted: Tuesday, March 12, 2019 11:10 AM
Joined: 12/15/2011
Posts: 16192


Mindful Viv, there are stereotypes about PWDs (persons with dementia), that we become empty vessels.  If you read our posts, you will see that we continue to be ourselves, despite having these major challenges.  I invite your brother to join us patients so we can meet and support him.

 

Iris L.


MindfulViv
Posted: Tuesday, March 12, 2019 11:17 AM
Joined: 3/12/2019
Posts: 7


Dear Iris, 

thank you for your sweet and most appreciated reply. I don't know if something could be different now, if we only took into account that stress wasn't the cause. I'd be delighted if my amazing brother could join you, but at the moment I'm typing (and crying), he's not able to remember how to hold a spoon to eat a snack I prepared for him. He can't write anymore... he just loves Freddie Mercury (and always play Freddie on loop to see my brother smile).

I saw some of the responses you gave to other people and I feel a wave of admiration towards you... towards all of you. 

I'm sorry for being this sad. I feel guilty that you are encouraging me... 


Iris L.
Posted: Tuesday, March 12, 2019 12:15 PM
Joined: 12/15/2011
Posts: 16192


Viv, I wrote a long response and lost it.  Ugh!  I will try to write again.  IMHO, the best therapy is to read the posts of patients and caregivers.  Professionals are prone to believing stereotypes unless they have actual experience as a caregiver.  The members here know what they are talking about.

PWDs can, (for lack of a better word), "absorb" the emotions of those around them.  So Viv, if you are sad around your brother, he will be more prone to being sad himself.  Watch some Teepa Snow videos on youtube and learn about validation from Naomi Feil.

Iris L.


Mimi S.
Posted: Tuesday, March 12, 2019 5:27 PM
Joined: 11/29/2011
Posts: 7035


Hi Viv,

Welcome to our world. I'm so glad you found us.

 

it does sound as though your brother is well along in the disease process.  I'm so sorry to hear that.

 

I think you might benefit from speaking with a social worker who is trained in dementia. Your local Alz. Assoc. chapter should be able to give you some names our help line 1-800-272-3900 will give you  the #. Call during normal business hours and make sure you are speaking to the local. National picks up if the call isn't answered within a certain # of rings.
And yes, I think all relatives of PWD worry about a possibility whenever they forget something. We PWD joke we don't have to worry abut that any more, we know we have it.
Another suggestion. If symptoms persist or you think they are getting worse, get tested. Usually a large University or Medical Complex with a dementia dept is the best place to look. Depending upon your insurance you may or may not need a referral. And if all is good, you have a good base test in case problems pop up later.

 

Yesm 

Smilesyourway
Posted: Wednesday, March 13, 2019 1:22 AM
Joined: 1/11/2019
Posts: 70


Hi Viv:

So sorry to hear of your brothers diagnosis and the stage he is in.  I noticed you mentioned music.  Music is a huge calmer for us.  Take a look on YouTube and what Teepa Snows the Changing Brain.  Very interesting....as Iris shared.  Just search her name and walla you will enter into your brother's world.  Although, much of the video's are for the caregivers you will find some general information about dementia as well.

Keep your chin up.  In the mean time search your own memory and play some of the old music he loved.  You'll see him light right up. 

I was diag. at 57 and am now 59.  My mother had dementia as well, although she was not early onset.  I worry in my early 50's if I had what she had......there were certainly signs, but I could not get the medical folks to listen.  It's your age, it's a girl thing "menopause" etc.  Anyhow here I am.  I'm a realist, so I believe in early detection, had I know then what I know now, I would or could have changed any things in my life. Of course this is me.....you will do whats right for you.  There is a lot of research about diet and brain health.  You on the right track, you've started you research just by joining this forum. 

Smiles