I don’t know what I’m doing

Grace123

Hello,
I am 25 years old. My mom (58) was diagnosed with early onset alzheimer’s recently. She was originally diagnosed with FTD last year, but due to genetic testing that discovered she has 2 copies of the APOE4 gene, her neurologist changed her diagnosis to EOA. Both her parents passed in the last few years from dementia. It has been the worst times in our lives. I was on my way home from a trip last year to be with my grandmother when she passed and my mom told me the news of her diagnosis. My world felt like it was ending. My boyfriend just moved in with me a year prior. We were happily planning our future. I then became consumed with the fear that this was genetic. My mom’s brother passed from ALS, so I joined a study that did free genetic testing for known genes linked between FTD and ALS. I came back all clear. My mom had her own testing that revealed the APOE4 gene (my tests did not include this gene). Since my mom has 2 copies of this gene, it is guaranteed I have at least one copy as well. I am now rushing to get married next year so my mom can be present physically and mentally. I always wanted kids, but now I don’t know how it will work because “What if I end up with EOA? What if I pass this to my child? How will I have money for a family if I have to care for my mom?” I feel now that, not only am I mourning the slow loss of my mom, but my life too. Everybody expects me to step up and care for her. My dad still works, but he is not in good shape. Their house is a disaster. My brother is 29 and lives with them because he has down syndrome and cannot care for himself. I am already expecting that I will have to take care of him when my parents are no longer able. I have no idea what I’m doing. I am trying to find out their financial situations (which are very poor) and get documents in order while also living my own life. I work full time and to be honest, I can’t handle this. I don’t want this to be my life. I know it sounds selfish. I know no one wants this, but how am I supposed to do this? I can’t afford to care for her. We can’t afford to pay someone else to. I just want my life back before all this happened. I am always thinking about my family and I am always trying to fix things, but I can NOT fix this and it kills me. I am angry. I am jealous of people my age who don’t have this to worry about and I wonder why my life could not have been that easy. I don’t mean to offend anyone. I just needed to vent and maybe find people in a situation like me. I need guidance.
Thank you.

123alisac

Hello, I’m sorry to hear that you are going through such a difficult time. You are completely justified to feel as you do. I am helping to care for my mom with dementia but as a 51 year old, and not in my 20s. This is an overwhelming and heartbreaking condition for any caregiver to deal with. Try to remember that you are not alone when dealing with this situation. There are so many positive experiences ahead in life and you will weather this storm. There are programs
such as Medicaid that can help pay medical expenses for those under 65 who cannot afford the services they need. Maybe she would be able to access care this way. You should not have to pay for her care. Everyone’s situation is different though.

I am at the beginning of my journey in my mom’s care because she has really changed this year and my dad is struggling to care for her at home. We need home care and are at the early stages of figuring this out. I’m sorry that I don’t have good advice to give.

The biggest life lesson I’ve learned is that while tough things are happening, we can still find happiness in our other relationships, and the positive things in life keep us going and moving forward. We have to solve the big problems step by step, one day at a time.

I have faith in you that you will make it through to the other side. Keep reaching out to others for support and guidance. That’s why I’m here too! ❤️

Grace123

https://alzconnected.org/discussion/comment/239123#Comment_239123

Thank you for your kind words. I really appreciate you. I’m sorry to hear about your mom. This is one of the worst things for anyone to got through and I wish you the best.

sandwichone123

Please recognize that being 25 years old and needing to set the foundations for your own life is not selfishness—it's what your parents raised you to do. Try to provide them with adequate care within their means, but do not sell your own life to care for theirs.

You are right that you can't fix this. You can provide some support. Senior services that have been developed to help with these situations won't kick in until she turns 60 (some may be available if her spouse is over 60), but the responsibility for her, your dad, and your brother cannot all fall on you. At 25 your life doesn't have enough foundation to carry all of that.

cdgbdr

I am so sorry you are in this situation. I have felt the same jealousy of others as I dealt with first my father, then my mother, and now my husband with dementia. You need to have your own life. Your mom should apply for SS disability and in the future may qualify for Medicaid. Is your dad agreeable to pursuing the legal things that are needed? You are understandably scared. Know that you can come here for support.

Grace123

https://alzconnected.org/discussion/comment/239126#Comment_239126

Thank you for your words and I’m so sorry. I helped her apply for disability a couple weeks back. We are just waiting now. I have gotten the paperwork together for MPOA, but we just need to all get together with a notary and some witnesses. I think my dad is agreeable, but he might not know exactly what needs done. I’m trying to research and join as many groups as I can to prepare myself.

Grace123

Thank you so much for saying this. My mom has always collected antiques, so she has been trying to sell some to get some money until we hear back about disability. I’m trying to help as much as I can. I am trying to help get legal things in order as I find out about them. I have tried to go help clean up their house when I have the time and mental capacity. I think I just carry a lot of guilt for thinking about myself in this situation, but I will try to care for myself too.

H1235

Welcome. There is a great group of people here who really understand some of what you are going through. You mentioned MPOA, but you probably also want a durable power of attorney. I assume your dad is still taking care of finances, but it something were to happen to him you need your bases covered. If your dad is willing I would try to get both for him as well (your mom can’t be his fallback anymore). We also did a living will. It just lets the person with dementia make some decisions about their care before things get too bad(DNR, feeding tubes, treatment for cancer). You might get help at a local commission on aging. If nothing else they may be able to give you information and phone numbers. There may be some special services or programs in your area that will be helpful for your mom and or your brother. Since it runs in the family you probably have some idea what to expect, but I attached a copy of a staging tool that is very helpful. There are so many symptoms that I was not aware of until I joined this group. I agree with the others here, do your best to get your mom the care she needs, but don’t stop living your. You should NOT be responsible for paying for her care. As questions come up, reach out, we are here for you.

https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf

Grace123

https://alzconnected.org/discussion/comment/239140#Comment_239140

Thank you for your advice and the staging tool will be a huge help. I really appreciate all the wisdom that has been shared so far.

JeriLynn66

Grace,

The Alzheimer's Association has Care Consultants at 1-800-272-3900 available 24/7 to speak with you to assist with planning and resources in your area.

I'm very sorry that you are dealing with this at such a young age. Please keep posting and know there are many kind and wise folks here to support you in this journey. Be well.

Grace123

https://alzconnected.org/discussion/comment/239170#Comment_239170

Thank you!