When Your Significant Other Becomes Your PCA
Suzanne and I met over 6 years ago. We both had an attraction to each other. Our friendship grew into a relationship.
As we spent more time with each other, she took on some caretaking responsibilities. She was the oldest of 5 kids.
Her sister has juvenile diabetes and her brother who sadly has passed away was severely disabled with autism. Her brother required lots of extra assistance and she was her mom’s helper with him. Suzanne is also a mom so she has a lot of natural caretaking abilities.
The transition to full-time PCA
As our relationship grew I became very comfortable with Suzanne assisting me with my needs. I started spending a few nights a week at her house.
I think that eased us into the transition of her becoming my full-time personal care assistant (PCA). One hurdle with Suzanne and I spending a lot of time together was that it took away from her ability to earn money. She was an Uber driver, which gave her flexibility with her schedule.
The Act 150 program
I live in Pennsylvania and we have a great program here called Act 150. I will write more about this program in another article.
Act 150 provides me with a set amount of hours per week that I have the ability to hire someone for my needs. My parents were getting to an age where it was too much on them physically to assist me. Suzanne and I talked in depth about this new role.
I asked quite a few people for their advice within the disabled community regarding having a significant other being your PCA. I received varying opinions on the subject.
The importance of communication and compromise
My biggest takeaways from this community were communication and compromise. I think I excel at communicating. My stubborn Irish side doesn’t do well with compromising. I am still working on that.
Another big concern of mine is burnout. It can be a lot for one person to handle someone’s caretaking every single day.
Suzanne is in her early 40’s and is in really good shape. However, she does occasionally pull a back muscle or strains herself from lifting me.
Allowing for breaks and alone time
If there are days where I don’t have any plans or when we don’t go to the Y for my pool exercise, I try to take it easy on her. I’ll skip a shower which requires about 4 extra lifts when you consider the back and forth from the wheelchair and then getting dressed.
I encourage her to go out a few times a week without me. I think it’s good for both of us to have some alone time. Even if it’s only 2 or 3 hours at a time.
The positives to this arrangement
There are quite a few advantages to our arrangement. It’s nice that we don’t have outside people in our home. We also can be flexible with our schedules. That normally doesn’t happen when you are hiring an outside person to be your PCA.
We both realize that we will need some outside assistance in the future but for now, we are making this work.
How about anyone here? Do you have your significant other as your only caretaker? How do you make it work?
Do you have unanswered questions about SMA treatment options?