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Not feeling the loss of a loved one, or loss of any tangible thing… feeling a sense of loss… loss of things I value.

I’ve tried to be a considerate person, to be caring, to be empathetic. I’ve been told that I sacrifice what’s best for myself and my loved ones too easily and too often because I put the needs and feelings of others ahead of our own.

I’ve been lectured quite a bit in the past year or so about prioritizing the needs of others and not standing up for those I love, what we need.

This happened with my son’s aide. Over the course of the last year, I’ve asked my son to understand, to be patient, tolerant. I’ve asked him to understand something he’s not able to comprehend, something that has caused him great stress and anxiety. He asked to talk to his support coordinator a couple of times, as he didn’t understand and was feeling like he didn’t matter, that his aide had changed and wasn’t the same person anymore.

Push finally came to shove… he asked me to “pull the plug” on the whole program, that he was tired of this, tired of feeling like he didn’t matter, tired of having to be patient while all these different people who’d been his aide went through all kinds of crises. He was tired of his schedule being changed, of not knowing from week to week who would be coming to work with him, whether anyone would. It was too much for him to process.

Frankly, it was too much for me to process. Having lost my power chair, experiencing increased pain, lack of sleep, side effects of new medications, increased memory loss issues, etc., it was becoming harder for me to remember dates, etc. My son was talking about nothing but the aide situation, from the time I opened my bedroom door in the morning, until he went to bed at night.

The agency had directed me to Human Resources regarding the second medical leave. The person who supervises the agency suggested that since we had no start date, duration, nor ending date for the medical leave, that Dec. 22 we should move the aide to back-up, keeping her on the payroll, but hiring someone to take her place, because there would surely be time off for pre-op tests, post-op follow up visits, etc.

Before we could get to that point, after an outing, my son told me he wasn’t comfortable going out with her anymore. She wasn’t the same person, she was ignoring him, he didn’t like the way she was treating me. We had an incident when they returned from volunteering, that left him and I extremely upset.

After consulting with Human Resources, they reminded me again that he comes first, that the aide’s problems were her problems and shouldn’t be brought into our home, to her job and that my son’s comfort and safety were the priorities we needed to focus on. I was given instruction to terminate.

I had felt, for a year, like a monster… knowing what she was dealing with, but being concerned about my son’s progress, his program. I had put him and his needs behind her needs, trying to be compassionate, trying to be understanding. Suddenly, I realized I had sacrificed him, for a year… his feelings, his needs, his comfort level, trying to be compassionate to our friend/his aide, when I should have been compassionate toward him. I’d been compassionate toward someone who did not appreciate the effort to accommodate her, did not appreciate the way her illness impacted everyone around her, that a young man with an intellectual disability could not possibly comprehend what was happening. I was supposed to be his advocate, his voice, his protector and I didn’t do that.

The search for a new aide began. Someone I know with approximately 30 years experience in care giving, having a 31 year old child with special needs, who’d managed her parent’s aides and has been an aide, showed interest in the position. Immediately, she made it clear that they must get the entire 15 hours a week of available time in every week, but then began this process by postponing the dates for us to work on the paperwork necessary to hire an aide, to reschedule appointments we had, etc. I’ve offered her an opportunity to job shadow our back-up aide at the volunteer location, so she can learn what’s expected, but she’s had excuses for not being able to do so yet, asking me if Christmas break came before she was able to do so, would the back-up aide take her up on her own time, off the clock and show her.

Already, though I’ve made it clear I’m NOT doing what I did with the last aide, with a number of our last aides, that I’m not going to make the needs and feelings of the aide a priority over my son’s, I’ve got someone wanting their needs should be paramount.

I feel a sense of loss… loss of myself, of what I value, what’s important to me, a sense of loss in that I cannot be compassionate with my son and others, at the same time because it becomes a conflict of interest. I feel that I can’t be true to myself. I dearly love my son, I want him to be happy, to be successful and I guess I feel a sense of loss of the very idealistic view that others would want these things too.

Hopefully, with the new year, we’ll close this chapter, put all of this behind us, and start a new chapter.

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