Parent diagnosed with Alzheimer's when I was an adolescent.

qyqnz

Hi all, I am wondering if anyone else had a parent diagnosed with dementia while they were young. My father was diagnosed with dementia in 2010, when I was starting high school. I'm in my mid twenties now.

Looking back, I felt that my experience growing up while my father progressed through the early stages of the disease left a fairly negative impact on me to this day.  Around the time I started a cycle of substance abuse that I am still recovering from. A lot of time and memories since then are blotted out with substances.

Something I am only processing now is the time before diagnosis. The story in my head used to go: my father and I were close when I was younger, and then drifted apart as I was in middle school and got into middle school troubles. Then, one day my father had a short stint in the hospital, he was diagnosed with dementia and all of sudden, he's retired and we slowly start to see the signs of the disease.

But I know in reality, disease progresses gradually. We were probably seeing the effects of the disease before the diagnosis. Maybe I'm stating the obvious, but it took me a long time to figure that out. And I finally thought that maybe, all those years that I thought my father was drifting away from me because I was a "bad kid", maybe it was really his behavior being affected by the beginning of the disease.

I don't know if that's true. I'll never know, of course. But, it took me a decade to recognize, that what I thought was the person, could actually be the disease. I think I was too young to recognize the subtlety, and because I didn't see that distinction, I started to attribute those same feelings of abandonment to others, which made it hard for me to keep close friendships. Now, I don't let anyone get close to me, and usually run from folks who do.

Sorry if this post is wrong, or misguided, or triggering. I don't really have anyone else to talk to about it, but I am really curious about other people's experiences with having a parent progress through dementia while they were younger. I am trying to get better, and I think that hearing other people's experiences would help me.

M1

Welcome qyqnz.  I'm not in your situation, but I would certainly guess that your instincts are entirely right.  Most of us with loved ones with dementia can tell you that symptoms are present years before formal diagnosis--for my partner, I was aware of changes at least five years before it was apparent to others.  Hope it helps you in your recovery to perhaps re-intepret things.  What you are doing takes a lot of strength and courage, and I wish you well.

harshedbuzz

qyqnc-

I am sorry for all you have been through.

My circumstances are quite different in that my dad was diagnosed "late onset" and middle stages when I was almost 60, but I truly believe that dad's mixed dementia was manifested in mood and emotional changes long before it was obvious that his memory and cognition had become impaired.

His mood became darker and he became more suspicious of those around him very early on in the disease process. During this time, he often accused me to stealing from or swindling him. By the middle stages, he started with confabulations which are incomplete memories where details are forgotten and backfilled randomly. During this phase, he rewrote family history accusing me of crimes my late sister and his had committed. 

I also noted that he was much less empathetic by the later early stages of the disease and cared little about the impact of his words and actions on others except as they might no longer be useful to him. 

HB

ecdouglas

My son (25) is also dealing with this.  He and I are on the frontlines with his dad who is in the middle stages of Alz (diagnosed in 2015 though - later than your dad). His dad was pretty withholding even back in the normal days, but he is downright mean and disapproving now.  It is very hard to see my son go through this and I've noticed that there are NO resources for young people who have to deal with this.  Fortunately we have each other which helps with the stress and sadness.

I remember we were on a trip about 11 years ago when he wasn't that bad.  He promised my son an ice cream cone and then later denied he ever said that.  Not a big deal to an adult, but so disappointing to a kid!  There have been lots of little things like that.  I wonder how it's affecting his attitudes and mental development.  He's lucky to have a good mom (me!) and a long-time girlfriend who lives with us.

Dad is very jealous of our (son and my) relationship.  He is happy when son helps out and interacts with us, but the minute he's gone dad starts fault-finding and criticizing.  He is paranoid, easily angered, hostile and many other negative feelings.  It is very hard for me too.  I'd say that I put up with somewhat abusive behavior for a long time - and it's hard now to repay that with the kindness that an ALZ sufferer deserves.  

I can see that my son has very mixed feelings.  On the one hand, it's his dad, who he wants a relationship with.  On the other had, his dad is obviously a bad and damaged person who brings negativity with him everywhere.  I know son feels like he's lost out on the "good" years - when dad was a dynamo - hard-working, smart, involved in city politics.  All the positives back then made up for his unpredictable and abrasive personality.  

I hope you can talk to your mom about all of this.  And please feel free to write us back.  Communication is probably the best medicine.