Becoming My Boyfriend’s Full Time Caretaker
I am the oldest of 5. I had one sister and 3 brothers.
Growing up in my family I was always by my mom’s side. Being the oldest meant I was in charge.
Everyone has always told me that I was a natural caretaker. My mom had 3 children within 2 ½ years. Then my parents took a break for a few years.
Caring for my younger siblings
I was 6 when my brother Robby was born. Then my youngest brother came along when I was 8. Sadly my 2 youngest siblings have passed away.
My sister Amy was born with juvenile diabetes. She required extra care because of her condition.
My brother Robby was severely disabled. He was diagnosed with autism and was non-verbal.
This was back in the ’80s. Most people had never heard of autism back then. Taking care of young people and people with disabilities was deeply ingrained in me as a child.
The beginning of our relationship
Mike and I met 6 years ago. I was 6 months removed from my separation from my ex-husband.
Being newly single and in the middle of a divorce and custody battle, I wasn’t looking for a relationship. There was something about Mike I knew I liked.
I would be lying if I didn’t say Mike’s SMA concerned me. The more Mike and I spent time together, the less I thought about his SMA.
Mike has a natural ability to put people at ease regarding his disability. Over the years our friendship evolved into a relationship.
Helping to care for my partner
While dating someone with a disability like SMA, I realized the “caretaking” aspect wasn’t a huge deal. All relationships involve caretaking on some level.
Obviously, I am helping Mike with his physical needs. What people don’t see or realize is the “caretaking” he’s doing for me.
Mike has been my emotional rock over the last few years. It has been some of the hardest years of my life and I tell Mike all the time that I wouldn’t have survived them without his caretaking of me.
Becoming Mike's full-time PCA
In March of 2020, Mike got enrolled in a state program that would help him pay for a full-time personal care assistant (PCA). We talked about me becoming his full-time PCA.
At this point, we were spending a considerable amount of time together. I was used to doing all of the things Mike needs on a part-time basis.
I wasn’t being paid at that point to help. I just needed to do it because we were together.
Thinking about the decision to become Mike’s full-time caretaker was overwhelming at first. I love Mike dearly but can anyone really do this day in and day out?
Communicating our concerns
In typical Mike fashion, he sat with me and we were open and honest about both of our fears and concerns. Communication is key to making a relationship work. Add on the additional relationship of caretaker, boss/employee takes a lot of work and understanding.
Mike does a great job of making sure I am ok. He is always sending me out for my alone time.
It’s his alone time too. I am happy to report that this has been a great decision for both of us over a year later.
Who here is in a relationship and also a full-time caretaker? How do you make it work?
Which emotional aspect of SMA do you find most difficult?