Is anyone here young with a parent who has dementia?
My mom got sick in my teen years and I am her only child. I haven't met a lot of people with similar situations as most peoples' parents get sick when they are 30+.
My mom is in a shared room in a Medicaid accepting Memory Care Unit. My mom is 83, but her roommate is much much younger. I met the roommate's daughter and she told me that she was in highschool when her mom was diagnosed with dementia. So if I had to guess, her mom was in her early 40's at diagnosis. She said that early onset dementia runs in her family and her mom is the 3rd generation to have it. The daughter appears to be in her late 20's or early 30's now. As I spoke with her I couldn't help but wonder if she had been tested to see if she carried the gene. She said that she had been managing her moms affairs for years. Started out placing her in assisted living and as she progressed into memory care.
Try to find a social worker that can help you navigate everything. It is a lot of work and confusing sometimes with all of the paperwork. If you simply cannot manage it, you may need to let your mom become a ward of the state. A social worker and or adult protective services can help you make that call. If you have any family at all, could you pull them in to help or at the very least advise?
Family is keeping secret from OP what’s going on. That means OP doesn’t have a right to know. OP isn’t POA. And bizarrely, family doesn’t want to tell OP the diagnosis, what’s going on.
I’m 49 and taking care of my dad. My mom passed away 4 years ago. I thought I was young for this situation. Eye opening. I’m so sorry you are going through this.
Do you have a primary care physician you can talk to for yourself ? Often times you can be tested for autism by a psychiatrist . Also ask for a social worker for yourself to get the support you need . Find out whose your Mother’s healthcare proxy ? You have every right to know her diagnosis since you are a only child . Someone made a good point you maybe able to get disability and Medicare which would help you greatly take care of yourself . You need a advocate someone to help you navigate through Life and take care of yourself since your on your own .
How old is Mom? If you are not living with her who are you living with?
You feel u may have Autism and have not been told this? You have been done a great disservice if you have not received the help a person with Autism can get. There should be a place near you that you can get help. Your still young enough to get these services. Testing to see where u fall on the spectrum. Training programs. Help getting jobs, a place to live. Autism is a recognized disability under Social Security.
I thought I might be autistic when I was in high school. It turns out that I have ADD but back then people didn’t think females could have it. They called it hyperactivity and females more often have the inattentive form among other reasons they didn’t recognize it in girls. It is definitely worth looking into testing for yourself. I was finally diagnosed when I was 35. I agree that your family is not being fair to you. I know someone whose mother was diagnosed with advanced cancer when the daughter was in college. The family didn’t tell her because they didn’t want to distract her from her studies. All it did was make it harder on her since she only found out when it couldn’t be hidden. You are an adult and deserve to be treated like one.
im 32 and my mom is 58. my stepdad has dementia and he is 88. i met him when i was 21.
now looking back, id say it was during my mid 20s when the first signs of his disease started to come out and we as a family, we just didn't have the knowledge at that time to figure out what it was.
I am 56 and just got my mentally ill, dementia level 3, with at least 7 different physical ailments out of my house and into a mental heath facility after she started threatening suicide once again. 15 months of pure hell. I don't want her back and am sticking to my guns.
I don’t think it matters what age anyone is who is helping an ailing family member. But, at 27, it wasn’t part of your plan to care for your MIL. I do have to say how awesome you are though!!! Your selfless at your young age and even though I don’t know you, I am very proud of you! Remember to take breaks whenever you can. Get rest, and don’t forget to breathe!
Do you have a disability? There might be a good reason you’re not told your mom’s diagnosis. Normally an adult child would already be so involved with the sick mom’s situation, that the adult child (already 20 years old now) would know all the details.
Your Mom is "...living in assisted living with alzheimer's / dementia, anxiety, depression, incontinence, parkinson's disease, and vision problems."
"she is Non-verbal and doesn't know who I am. She got sick around the time I was 13"
So, what makes you think she has Parkinsons?
Who is her Medical Representative, MPoA or legal guardian? This is the person I would ask about her actual illness. If they won't tell you, I'd consider consulting with an attorney to get access to her medical records. What if she has a disease that you could inherit? I'd want to know. Shame on your family for treating you like a toddler.
“Shame on your family for treating you like a toddler.”
There must be a reason. Geaton777, if the situation were normal, an only child (now already 20 years old) would be aware since a long time, what her mom’s diagnosis is. There must be a reason why the only child (OP) isn’t told.
Im not disabled to my knowledge but I always believed I was autistic and my family never told me. Everyone talks down to me and treats me like a child.
Im not sure my family is keeping it a secret from me, she vaguely has early onset dementia, I am 20 and she is Non-verbal and doesn't know who I am. She got sick around the time I was 13.
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Try to find a social worker that can help you navigate everything. It is a lot of work and confusing sometimes with all of the paperwork. If you simply cannot manage it, you may need to let your mom become a ward of the state. A social worker and or adult protective services can help you make that call. If you have any family at all, could you pull them in to help or at the very least advise?
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You feel u may have Autism and have not been told this? You have been done a great disservice if you have not received the help a person with Autism can get. There should be a place near you that you can get help. Your still young enough to get these services. Testing to see where u fall on the spectrum. Training programs. Help getting jobs, a place to live. Autism is a recognized disability under Social Security.
now looking back, id say it was during my mid 20s when the first signs of his disease started to come out and we as a family, we just didn't have the knowledge at that time to figure out what it was.
Your Mom is "...living in assisted living with alzheimer's / dementia, anxiety, depression, incontinence, parkinson's disease, and vision problems."
"she is Non-verbal and doesn't know who I am. She got sick around the time I was 13"
So, what makes you think she has Parkinsons?
Who is her Medical Representative, MPoA or legal guardian? This is the person I would ask about her actual illness. If they won't tell you, I'd consider consulting with an attorney to get access to her medical records. What if she has a disease that you could inherit? I'd want to know. Shame on your family for treating you like a toddler.
There must be a reason. Geaton777, if the situation were normal, an only child (now already 20 years old) would be aware since a long time, what her mom’s diagnosis is. There must be a reason why the only child (OP) isn’t told.
https://www.tvo.org/video/documentaries/much-too-young-feature-version
Your family is keeping her health diagnosis secret from you. That’s very odd.
Maybe you’re disabled in some way, and that’s why they don’t tell you all the details?
It’s also unlikely that it’s dementia. If she’s non-verbal, can’t recognize you, she must have had brain damage, which can happen in a million ways.
When was she diagnosed and at what age was she at diagnosis?