I (24yo F) live independently here in DC and have a good life. I have a great full-time job that pays pretty well for someone my age, go to grad school part time, and have a happy social life. I have an excellent relationship with my parents, but I need to talk to them about how my special needs sibling (21yo M) affects my life in the present and the future. I get along very well with my parents, but I'm not sure how to broach this topic in a way that is productive and respectful.
My younger brother has severe mental and physical disabilities. He has the mental age of an infant. He does not speak or make eye contact. He rarely smiles or frowns, and usually has a neutral facial expression, so it's hard to know what he is thinking or feeling. He doesn't appear to recognize me or my parents when we enter a room. My parents feed him, bathe him, brush his teeth, shave his face (since puberty), clothe him, change his diapers, and attend to his every need. Yes, my parents have changed diapers every single day since I was born in 1990, with the exception of one kids-free vacation they took earlier this year.
They are really excellent parents (discussed here
if you're interested). In addition to parenting me well, they are incredibly loving and attentive to my brother, and
have a great marriage to boot. I do encourage them to look into respite care and the like, because I can only imagine how exhausted they must be after caring for him for this long.
Anyway, there are two big Brother-related issues I need to discuss with them:
1. Finances. My parents are not amazing with money, and while they do have life insurance and some money socked away it is not a huge amount. I will become my brother's caretaker when they pass away (hopefully not for 30 years or so!). I am absolutely not going to care for him myself - call me callous, but I am point-blank not changing my brother's diapers every day. The level of care he demands is expensive to outsource, however, and I worry that when my parents die I will be financially ruined by paying for his care. (My rudimentary estimates put his care in the $100k+ range per year, so unless I am really making it big I'll be in the poorhouse myself, even with gov't support and my parents' life insurance/savings.)
So, the first issue I need to discuss with them is money - how much exactly is there, how can we leverage it, what care options they've looked into already, etc. (They already know that I don't plan to keep him in my home and administer care myself, so that part won't shock or upset them.)
2. Family time. Because of my brother's special needs, I do not get to spend much time with my parents as a pair - I can count on both hands the number of times the three of us have done something fun together. Usually when I visit them I will Do Something Fun with my dad, while my mom babysits, and then later I Do Something Fun with my mom, and my dad babysits. The parent with me during this tends to feel a little guilty about leaving the other parent home alone with brother. The bulk of my visits are made up of my dad working while my mom and I stay home with brother and watch TV, since he can't go to the movies, walk far enough to really spend time outdoors, etc.
So, at the risk of sounding petulant, the second issue I want to discuss with them is family time. They aren't really young, and I want to get as much quality time with them as possible. In my view this is going to require preferably (a) occasional respite care for brother or (b) them ceasing to express their guilt at leaving the other one home alone with brother while they're spending time with me. Hearing about how hard it is for mom to watch him all day alone just makes me feel bad when I'm trying to hike or whatever with my dad, you know?
My parents are very approachable and I've always felt like I could take anything to them, but it's hard to broach this topic with them in a way that isn't overly emotional (and therefore unproductive). I know they've had a hard time of it with him, and I want to respect that while also asking that my needs and wants be taken into account as well. Any thoughts on how to frame my questions?