Hello:

this is my first post and I must admit, I'm in over my head right now.
I am 24 years old and was heading towards a life with my significant other when his father was diagnosed with EOAD. While our life together is still moving forward, there are some obvious bumps in the road. He is moving back home to be with his father during the next few years (we currently live on the East coast and his father is in TN), and I am starting law school in Philadelphia this coming fall.

I believe that I am going to move to be with him and transfer schools after a year, but I am incredibly inexperienced with understanding and dealing with something this devastating.

I guess I am wondering how much to be involved with the more "touchy" details of his disease. My significant other has been dealing with the emotional devastation that comes with the diagnosis (he lost his mother to a brain tumor four years ago), and I have no idea how to support him through this.

I can't imagine losing this charismatic man to such an awful disease, and I'm terrified to have my boyfriend go through this again so shortly after losing his mother. After doing some research, I"m even more concerned that he is next in line to develop this disease.

I love him and his family, but am so scared of what awaits him and us in this new place. I don't know what I'm looking for by posting this, only that I'm ashamed to feel so helpless and hopeless.

I can't help but hate myself for being so selfish that in the back of my mind I'm so angry and feeling so hopeless that our life we were ready to take on in our city together will never be the same. he is so young to be losing both of his parents - I understand why he needs to go home, but I'm scared to go with him.
I have no right to complain, I have been so blessed my entire life and this is minimal compared to what many face. I just feel so lost and confused, and am angry that I feel this way - I'm not even the one losing my parents, I should be the strong one for him.

Thanks for reading (if you've even made it this far!), I don't know where else to turn and I"m ashamed to be angry and hurt. You are all amazing people, and those in your life suffering are incredibly lucky to have your support.

PHIDS: no it isn't fair, but you do have a decent man it seems. Not everyone would move home. If he has sibs and other relatives, he may be abel to talk to the DRs. and better assess what's needed from all. I think you can help him most by just being there when he needs to vent, by phone, e-mail, and maybe you can arrange a short TN trip. Spend a few days with him and his father, then give him a couple of days away with you while home care workers can help out. There's so much you don't know yet about the father's status. Early onset means I think, onset before age 60 and there are many who lead productive lives while fighting this disease for many years. You may need to be brave for your man, do some extra research on on-line resources in this area, call the local TN alzheimers chapter for resources, get him a list of sites he can read for information --
but only if he is receptive at this point. I have a feeling you will be a great comfort to him. As for worrying about his being "next in line" there is no way to know what the future brings in the way of successes, cures, and tragedies. We are all at risk for something. So one problem at a time. This will be life changing for him, and you will learn much about yourself too. I'm sorry you both have to go through this at your age. He can also look into geriatic care managers to assess his father and help locate additional help, tho these care managers do cost money. It might be worth it.

Warmly,

Puella

Bless you "Moms_Buddy!" and all posters!! your post came exactly when I needed it! My SO is back home right now and is spending this weekend with his father and called to give me an updated status report.

I believe his father is at a much more advanced stage than we were aware. He is having trouble remembering where he is going and what he is doing (we thought it was at the point of just being some mental fuzzyness).

It is a time of A LOT of uncertainty, and I do want to thank you all for your support and especially your kind words.

Welcome, Phids!! At 24, you are a remarkable young person for tackling these issues!! I have a 24 year old son and know how difficult it would be for him to have the rug pulled out from under him the way life has done with you. You are heroic for considering changing YOUR life's plans to care for another.

quote:

I'm ashamed to feel so helpless and hopeless.

I can't help but hate myself for being so selfish that in the back of my mind I'm so angry and feeling so hopeless that our life we were ready to take on in our city together will never be the same.

Sweetie, take it easy on yourself. Between you and your SO, you are getting an early dose of the unpleasant issues that come in life. You have a right to LIVE your life and that does not HAVE to be at odds with caring for/about those you hold dear. I understand your SO having to go home to spend time with his father and watch out for him. I also understand your fear of moving with him or remaining at school. Either way is scary with an uncertain outcome. BUT one CAN rtansfer schools; one CAN take a semester off; and one CAN travel to visit, so you have options before you. One of the hardest lessons we learn in life is that we can't be all things to all people. Unless you have to make a decision immediately, let it ride a little and see how you feel in a few weeks. Again - you are a rare individual to be considering these issues with such sensitivity. To thine own self be true - 'cause no one else will if you don't!!! Big hug!!!

Welcome.I too have the same feelings,BUT I have AD.I hate that my hubby has to put up with me on days I'm grouchy,Irritated.I know when I'm this way,but I can't help it.The disease over rides all else at times,like it or not.
I've been told "Oh,you don't have Ad or you wouldn't know what's going on".HA I beg to differ,some of us know exactly what's going on we just can't control it.
Until you've walked In my shoes,you have no Idea what It's like.This is what I tell them.They shut up in a hurry.

Hi Phids, My name is Don and I take care of my wife who has dementia. If you are human you will have feelings and emotions. You are taking the right step by writing your post and looking for support. It is easy to imagine worse case situations but most of us caregivers are just helping the person cope as they slowly lose their abilities to function day by day. Welcome and I hope you find what you need.