First Time Posting(1)

Kim8

Hello, my name is Kim. My mother was diagnosed with Early Onset Alzheimer's when I was 10. I have been a primary caregiver to her for half of my life now. My parents are immigrants from Germany, so the only people that take care of her are my father, my older brother and myself. However, her relationship with my brother and father can be strained at times, so growing up much of the caregiving fell on me. 

I started college in the fall of 2019... the college being a 5 hour drive from my hometown. During the fall semester I visited often and then COVID sent us home in the spring, so it wasn't as bad last year. I have now fully moved to the city where my university is located and at the same time my mother's condition has of course declined. I know that I am the person she loves most in this world and has recently started saying to my father that she will "wait to begin eating dinner until Kim gets home". I guess my reason for posting today is to see if anyone knows how to address the guilt that I feel for choosing to begin my life instead of staying at home to care for her. The second reason for posting being to find advice on how to make this time easier on her. I visit when I can and call often, but I'm not sure if there are any ways that can make this easier on her. 

Finally, I am so relieved to at last have found people who understand. Growing up I felt so alone because teenagers don't understand the gravity of Alzheimer's Disease, go figure. My heart goes out to all of you- I know how tough this is. 

chrisp1653

Kim, you say that teenagers don't understand the gravity of this disease. Well, let me tell you something : adults don't understand it either.  And guilt ! Oh my... Guilt knows no age. Most all of us feel it at one time, or another.

Your predicament is a tough one, and I don't really feel qualified to address it, inasmuch as I was retired when my Barbara developed dementia. As a question of my own, may I ask what the situations are of your brother and your father ? Do they work ? Does your brother go to school, or is he maybe married ? I guess I'm curious why the burden of caregiver has fallen mostly on you .

Anyway, I wanted to jump in right away and tell you that you really are NOT alone with this group here. The people here have seen it all, and been through it all, and I am quite certain that you'll be seeing responses from some of them here very soon.

I tell ya, life ain't easy for a boy named Sue, but it's infinitely easier than it is for a caregiver !

Hang in there.

Chris

M1

Welcome Kim. I can imagine the pain you feel, as a dutiful daughter. But I also know your mother would absolutely want you to go on with your life-that is what parents do. So let that assuage your guilt; she wants you to thrive. You are the arrow from her bow, as Gibrahn so beautifully wrote. You can honor her with your life. And come here when you need support, we do understand. Herzliche Grusse-

Mint

Kim,

Glad you found us.  This is an awful heavy load you have been bearing.  Sounds like you are a very caring, loving and mature daughter.  It is important to take care of yourself also as well as your mom.  You are important too.  You are preparing yourself for life which is important for your mom as well as you.  She would have wanted you to take care of yourself.  She would be proud of you.  

Kim8

Hi Chris,

Thank you for your encouraging words. Explaining the strain in my brother and father's relationship is a little difficult. Basically, she thinks that she is me, I am her mother, my father is her father, and my older brother is her older brother. She loved her mother beyond words, but resented her father and older brother. As such, my brother and father got a lot of hatred from her when I was younger. My father used to work almost every day just to get away from the situation and my brother would also "run away" from the situation and go to a friends house. That's what I mean when I say that most of the burden fell on me. I was the one that was always home taking care of my mother. 

With the medication that my mom has received, it has gotten a little better, (mostly because we have found ways to make her happy with sweets and avoid arguments altogether ). My father currently works part time while she sleeps and my brother lives with his girlfriend a short drive away from my parents' house and also frequently checks in to make sure everything is okay.  

Kim8

Thank you all for the support, it is much appreciated!

MimiMinder

Dear Kim,

I am so glad you came to the group. Hopefully you will feel supported and get answers to some of your questions. I am wondering if you have reached out to your local ALZ chapter for any support. Possibly they would have resources and suggestions to share with you.

You mentioned that your parents came to the US from Germany. I get that English is not their first language, but is there any other reason only family is involved in your mother's care? At some point it might be very useful for care partners to come to the home to help out. If your mother isn't comfortable speaking English, would it be possible to find other German speakers in the community? (If you happen to live in central Iowa, I would love to put my rusty German skills to use!!)

Pursuing your education is vital. It sounds like so much was put on hold so that you could help your mother. While that is noble and incredibly sweet, there is nothing wrong with following your dreams. Good luck with your studies and please reach back out and let us know how things are going.

~ Diana