Being a caregiver is lonely. I have spent the better part of 24 years taking care of my daughter. While at times it was more parenting than caregiving, inevitably it has taken on the latter. Most of my friends were parenting when I was. Through those toddler, pre-teen, and even teen years, we all had similar things going on. We had the same events, the same plans, the same basic lives. Even as a single parent, we had our sitters when needed, and made our plans when we could get away. As parents, we know this will happen, and we work to find time for ourselves, friendships and love. This time in my life has passed.

My youngest child is now 21, and he has moved out and attends college. He doesn’t have any plans to move back, and I don’t really blame him. He’s living his best life, and I can pat myself on the back for getting him there. Phoebe is my oldest, and for the last 3 years I have been her constant caregiver. Once my son moved out, it was just she and I. I didn’t plan on being a caregiver. It might be for some people, but for me it’s very difficult. I didn’t realize how time consuming this life was going to be. For comparison, it’s like I have a toddler with me 24/7. She may look 24, but her mind is very young, and her needs are even greater. I’d like to mention that she has made great strides. We (her school team and I) work hard to make her more independent. She does surprise us, and she does try, but if you aren’t on all the time, she regresses and takes advantage. Like a toddler, she is a master manipulator, and she knows when I’m tired and can get away with things.

In a time when it should be easy to go to dinner with friends, get away for weekends, and go get a drink, it truly is still a chore. I’m still parenting. I still have to find someone to take care of Phoebe and sometimes that just isn’t possible in the last moment. Plans have to be made, and when you are 53 it should be way easier. When she’s sick, I can’t just leave her here alone, I have to find care. I have a few people who can watch Phoebe, but even they need more time. It’s just never that simple. Life gets lonely. I don’t blame people for not wanting to ask, it’s a pain to wait for an answer from me and they all know that I need time to get it organized.

Until I find suitable housing and caregiving, this is going to be my life and I don’t see it getting any easier. At 26 years old, Phoebe will phase out of her program and we will have to find some other kind of day program for her to attend. This is going to be difficult for both of us. I’m hoping we will have found some kind of housing for her by then.

I’m sure there are many families out there dealing with the same thing. This isn’t easy as I am doing it by myself and there are limited resources here. For now, I’ll plug along and keep looking.