A step back

So, we’ve had to take a step back. Phoebe’s situation at her new home did not work out. Her behaviors and anxiety got the best of her, and we found ourselves back at home. I’ve struggled with how to write this and not blame myself. In the matter of a few weeks, I decided to move her, move myself and she graduated from her post-secondary program. This was ultimately a bad decision. Too many changes, and I should have known better. My philosophy was that it was better to do it all at once and rip that band-aid. Well, that backfired.

I take all the blame on this one. Phoebe became aggressive, and unpredictable when she couldn’t control her environment. I had almost forgotten what that Phoebe was like. Not sleeping, aggressions, blurting and repeating, over eating, etc. She didn’t have many full-blown meltdowns anymore at home, as I ultra structured her world around her. I almost forgot. Almost.

I ended up doing more work than I did when I was at home, and that obviously was not the goal. Her independence was the goal. It just didn’t work. While I am sad, angry and literally so exhausted, I’m also aware of how Phoebe feels. She can’t help that it didn’t work. She can’t help who she is, and how she feels and reacts. (Mostly). I also can’t wrap my head around why I can’t help her more. It’s a vicious circle.

For now, she lives with me but I am actively seeking a better situation for her (and for me). Something that will meet her needs. This is all we want.

Phoebe would like her independence, and so would I.

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Who am I?

For 26 years, I have been the primary caregiver to my daughter. Some kids hang around home for a while. However, most of them don’t require the same amount of care that mine did. While it wasn’t always super hard, most of it was. Navigating her education and health took up a majority of her young life, but that was only a small part. Living with someone who is cognitively low, behaviorally challenging, and can’t take care of their general needs is exhausting. It’s also very time consuming. Someone has to be taking care of her at all times. There is no “down-time”, unless someone else has her. Recently, big changes have been made.

Phoebe and a friend moved in to a home with various caregivers. These caregivers are saints. They are enduring the behaviors, and the ups and the downs of it all. All the things her friend’s mom and I have done for so long. The friend’s mom manages schedule of caregivers, and we are constantly talking and rearranging things. Both girls need care 24/7. We know there are going to be bumps in the road, and eventually things may (or may not) get easier. We both see the girls often and do what we can to make the transition smooth. I worry constantly about her and her life.

As for me, I have been wondering what to do with my life. For the last 26 years, I have been this person, and now I am someone else. I will always be caring for her and navigating, but the 24/7 is gone. Someone once told my mom, “It’s like the anchor is gone that kept you in one place. Without the anchor, you’re just swimming around aimlessly.” My daily life has completely changed, and I don’t even know what to do. I haven’t played a sport, or done much exercise. I don’t have any hobbies like gardening, art (outside of school), reading, or any great passions.

This new era is hard when you’re 54 years old. Yes, 54. One day I was 35, and the next day I’m 54. My adult life has been all about her and her life. What can I do to make her life better? How do I make sure she’s alright and happy? Now, I think I’ve got her there…what about me? This new part of my life is weird. I’m not sure what I like or what to even talk about??? I guess I need to start this process and figure these things out.

Writing? Art? Traveling?

Who Am I?

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Jealousy and understanding

I’m jealous. I’m jealous that most adults my age can go have drinks, dinner, movies, or whatever sounds good at that very moment. I’m jealous that most adults who are over 50 can think a lot about what they want for their future, and can see how that looks. (and yes, I know this isn’t true of everyone). I’m jealous of caregivers that have more than one person that cares for their dependent. I’m jealous that projects don’t usually take 6-8 months because you can work on them whenever, and don’t have to stop to help your dependent, or to watch your girl so she doesn’t eat everything in the pantry. I’m jealous of those people that aren’t utterly exhausted by the end of the week because they are doing a million jobs at once.

This all sounds very selfish, I’m sure. However, this is where my brain goes when I’m mentally and physically exhausted. I have to tell myself, “I think it’s ok for me to feel this way right?” For close to 25 years, I have been doing this. I’d say about 98% of the time it’s hard. The other 2% of the time, I get short breaks and find solace in Respite camps, and trips (while another caregiver takes care of her). When I was 35, 40, and even 45 I found it to be much easier. At 53, managing menopause and caregiving is very difficult. I’m clumsy, sweaty, angry and exhausted.

That all being said, I have to remember that my daughter can’t help who she is. She can’t help it. She can’t help that her anxiety rules most of her behaviors, and that she wants attention all the time. She can’t help that she wants to eat 24/7, and that she has sensory issues. She also can’t help her social awkwardness and her ability to be so inappropriate. Recently, she told me, “No one wants me.” It broke me. I had to take a step back and realize that her happiness matters too. I have to remember that she isn’t going to change. The change has to be from me. My menopause has to take a step back and be a little more patient. Each weekend for the last few months, I have done what she wanted to do and realized this is who she is…forever. Projects have to wait, or she has to be included. I am working to be better at understanding.

I’m still jealous of those things from time to time, but I remember that she needs me. I am her only constant, and she deserves love and understanding. Eventually, the right place will become available and although she will still need me, I will be able to do all those things. (Sooner than later)

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