I had my lovely sister over this weekend. We were discussing the possible change in my nursing aide hours. This is all coming from the incident when I fell and couldn’t get up. https://multipleexperiences.org/2021/08/27/i-pressed-the-med-alert-button/. After this unfortunate issue, my mom and step dad decided I needed more hours of care. I actually had an evaluation with my insurance a few days later by lucky coincidence. We made a request to change my nursing aide hours from 8 hours Monday-Friday to 18 hours Monday-Sunday. We figured aim high.

Well my insurance came back with a 2 hour increase 7 days. NOT an increase of 2 hours a day, but a 2 hour increase per week. Now I can take my 40 hours I am getting, increase that by 2 and divide it by 7. Basically making it 6 hours a day 7 days a week or add 15 minutes to be already scheduled 11-7 Monday-Friday. Not really anything that was going to make a difference. Certainly not going to add piece of mind for my family.

The problem is, and what my parents don’t understand, the nursing aide hours I get are based on my ADL’s or activities of daily living. Each function I need help with is broken out into a time, like showering would be maybe 15 minutes. From their a total hour is figured for the week. There is a little flexibility but not much. What my mom really wants for me is custodial nursing care. A babysitter for those times I am not having a good day so I am not alone or in any danger of getting hurt. Those days we can never predict so she wants someone round the clock scheduled so it won’t ever become a problem again. Insurance isn’t going to do that but I have a great case manager. She has me appealing the decision and while I’m doing that I’m actually also getting signed up with a nursing home without walls program that is more generous with custodial aide hours. The goal of this program is to avoid a nursing home or rehab admission so me falling is actually a big concern. I won’t get the ridiculous hours we requested but I would definitely get more than the 2 from Aetna.

That brings me to my next issue. There is a reason I’ve fought against the aide on the weekend. I can’t wait until 7pm on Fridays. I like my aide a lot but I hate having someone around me all the time. I hate having to do small talk when I don’t feel like it or being watched when I pee. I hate having the presence in the house even when she isn’t on the room 5 days a week. I just miss my private space. I think that is part of the reason I am somewhat antisocial over the weekend because I feel like it is the only time I have to myself. It isn’t that I am doing anything different than when my aide is here but the house has a different vibe. The house is still and quiet. I don’t get that Monday through Friday and I hate that. That is why I am always pushing back against the aide hours. I know I have issues but I need my space. How do you get that when someone is in your home?

Right now my aide and I decided that on Monday and Wednesday we would add one additional hour to make up the 2 hour increase. Even that hour I feel. I just want to tell her to go home but I don’t. Last Wednesday it was a good thing she was here because I did have a little slip and she was there. Even so it is a battle for me between safety and my space. I know it eases everyone’s mind knowing I am safe so I am doing all the steps but for me, I won’t be happy with someone always here. It is another unfair part of being young with multiple sclerosis.