LO was recently diagnosed with YOAD

Mai262

My dad, who is 55 years old, was recently diagnosed with early onset Alzheimer's. I believe he is in the middle stages Alzheimer's, I'm not sure. For some reason I don't want to talk about any of it with friends or family, however, because of that I haven't really been able to come to terms with or accept it. One of the questions I tend to ask myself a lot is why did this have to happen to him at such a young age? Right now he can't read or write, struggles to hold a conversation, struggles following directions/tasks, gets easily confused, struggles with memory, etc. My dad is really an amazing person. He's always been funny, charismatic, sociable, smart, etc. It just hurts me so much that he has to go through this at such a young age. It still upsets me seeing him like this. Right now I'm in college and I go home about every weekend if I can. When I'm not home I guess I just kind of forget how bad his symptoms actually are, and when I go home I am reminded of it and it just upsets me so much. And it seems like every time I go home it's already worse than the last time I saw him. Another thing is that I'm only 19. I'm just so worried that my dad isn't really going to see or comprehend (if that word makes sense) my accomplishments or important parts of my life. Like me getting married and having kids one day. All I want is to make him proud especially since I've caused a lot of problems and never did well in school when I was younger. And I'm worried that I'm not really going to be able to I guess show him my successes in the future since I still have a lot of time till that point. It just seems like the rest of my family isn't struggling as much with accepting it as I am. I just don't really know what to do or how to accept it I guess.

Quilting brings calm

It’s okay to need time to process this. Both you and he are young for this to happen.  It’s okay to not talk about it with people that won’t understand.  I’m glad you’ve reached out to us and I know people here will direct you to further resources. 

Your older relatives may be more familiar with dementia and that may be why they don’t seem as confused by this, or don’t seem to have trouble accepting the diagnosis.  

The best way for you to help?  Keep doing the good stuff.  Stay focused on your classes, your job if you have  one.  Keep doing the right things and not the wrong ones.  Stay away from those people that want you to self medicate etc.  Your relatives  got enough going on. They are stressed and worrying about you doing the wrong things will stress them further. Doing the right stuff/ that will make your dad proud. 

harshedbuzz

Mai-

I am so sorry for what you are living with right now. You and your dad are so very young to be in the situations in which you find yourselves. 

You are correct that your dad will likely not be aware of the successes and milestones in your life whether he is still here or has passed on. That said, his ability to feel emotion will remain well into the disease process, so you have it in your power to make him feel loved and valued in the time you have with him. 

It might be helpful to read up on the concept of ambiguous loss. It might also be useful to seek some therapy to work through this as it is hugely unlikely that you have peers who can appreciate what you are living through; often colleges have this on campus.

Ambiguous loss - Wikipedia

HB

mommyandme (m&m)

Regret is a difficult thing to live with.  As a parent, I tried to explain that to my children. It’s a hard concept to absorb when living in the moment as many of us did in our young adult years.  Unfortunately lots of us now must just “do today” since dealing with this horrible disease.  

I imagine that your father has forgiven you for the hard times you created.  If you’re not sure, it’s never too late to ask for his forgiveness.  We never know what our LOs understand from minute to minute.  Today they might comprehend, tomorrow they won’t or visa versa.  You can always share your future plans and your current achievements with him during a non chaotic time. 

Another very difficult life experience is forgiving yourself.  I hope you will work on that.  Journaling about your choices, what you regret, what you hope for…etc may help.  We’ve all done things in this life that we wish we hadn’t.  Don’t look back, you’ve got only the future.  Let your past mistakes be history and do whatever you can to forgive yourself.  Let the darkness go.  

Parents really only want their children to be healthy and happy.  It’s hard to have those qualities when holding onto regret.  

I’m so sorry for your pain.  Today is a new day! 

Jordana B

I can relate to what it is like to see your dad change. I am losing my dad to AD and he is 85 but it is so hard to not have him be my loving sweet and always there for me dad. My mom controls all their money now and it feels like I have lost the one person who has had my back for my entire life. I feel very alone and do not talk about it either. A dad makes a daughter feel safe and protected and that is hard to lose!

Phoenix1966

I lost my father to a heart attack when I was 30 and he was 56. It devastated me, since he was the first of my family that I knew and loved to die. He was my adoptive father, who had chosen me to be his only child. To this day, I miss him and wish there was the chance to share things with him. I am not religious, so I do not believe he is watching me or with me in spirit. But I did know him and I always knew he wanted me to go on, be strong, live my life and carry on.

As @harshedbuzz suggested, please seek therapy to work through the loss you are currently experiencing. And as @mommyandme (m&m) said, I am quite sure your father has already forgiven you for what you feel were your failures(and he probably recognized as your attempts at defining who you will/want to be. He was very young once, too, and knows those feelings).

While it may look like your father is slowly drifting out to sea and will eventually be lost to you and your family, you have today. Live in the moment with him. Trust me. You will find joy in the most unexpected of places. And treasure all the time you still have with him, even if it isn’t what you had hoped it would look like.

Please post here whenever you need to. The members here understand. You are not alone.

MN Chickadee

That all sounds pretty normal. The steps of grieving apply well before they are gone. Even for older people going through it there is plenty of anticipatory grief. You are very young to have to deal with this. The grief is relentless because our LO's physical body is still here but we slowly lose them and are constantly reminded of what's to come. I was in my 20s when my mom's Alz started to show symptoms (she was in her 50s) and I had just had my first baby when it got really bad. She barely knew that first baby and never really knew my second. Incredibly unfair. We were all robbed of so much by Alz and still a few years later after her death I feel anger about that. The grief was insidious and nonstop for years. There were some really dark periods in the middle of her disease where I was a mess. Therapy helped. I try to live every day now in a way that would make her proud, and that utilizes what I learned from the journey to make the world better in whatever way I can. It's all I can do. I guess one silver lining of the whole thing is it made me incredibly strong. I've been to hell and back with dementia and so far nothing else compares. I'm so sorry you are going through this.