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I’ve realized recently that I’m having a very hard time with memory and struggling a great deal with changes to our routine.

I suspect the memory issues have a lot to do with the changes to our routine, because I just can’t keep things straight.

As I believe I shared previously, my son’s aide was diagnosed with cancer and began treatment last year. In September last year we employed a back-up aide, so our permanent aide could have surgery and continue treatment. Our plan was that the back-up aide could work until school was out this year, then, after approximately a 9 month medical leave of absence, our permanent aide would come back.

The transition didn’t take place without some stress and complications.

Our routine changed significantly with the back-up aide, as she had restrictions on her time with my son because she needed to be back no later than 1:30 to get to her full-time job. We managed to work around her needs. We were only using about two thirds of our allotted time each week. Near the end of her scheduled time with us, our back-up aide experienced recurring health problems that required time off for doctor appointments and tests. We also experienced difficulty with the volunteer position my son has had for years, as they were running out of work on the second day of each week that he had volunteered, so we had to change that routine, find another outing he could have to use our budgeted hours.

Our permanent aide was kind of vague, evasive about details regarding when she’d be able to return, but we knew the agreement had been for her to return when school let out for the Summer. She wasn’t able to return on her first day back, worked two days of her first week, then informed me that she wanted the whole following week off. I scrambled and got our back-up aide to take some hours, but her full-time job had changed and to provide her with hours would have meant changing my son’s routine to evening, from morning. I thought it would be a good experience, but he was having trouble accepting the change and he was struggling a lot with whether his permanent aide was going to actually return to work, or keep needing more time off. I wasn’t able to switch his schedule to evenings, so he missed some more of his scheduled time out.

During this time, I was really struggling with who was going to work, when, who had which restrictions to their time, etc. I just drew a blank, couldn’t keep up with the changes. It all felt out of my control. My son has a habit of perseverating on stressful things. He talks about things that worry him over and over, so a lot of my time has been spent trying to reassure him, which is difficult when I can’t remember what’s been decided, who needs what, etc.

I woke one morning to my alarm, Sidney woke and dressed to go out, but no aide arrived. I contacted the back-up and discovered she’d started first shift at her full-time job, so she didn’t intend to come until the afternoon, even though we’d not set a time for afternoon hours. I was all messed up. I knew we’d talked about Nightline bus route, but we hadn’t determined a start time for her to arrive. It was very confusing.

Since coming back, our permanent aide has expressed changes be made to her schedule for the 13th and 14th of this month, one day wanting to start a little later, but not really disrupt the schedule too much, the other day wanting to come in the afternoon and go out for dinner instead of lunch. My son doesn’t want to do that, so as it stands right now, we’re going to accommodate the change on the 13th, but going to stay home on the 14th.

I also learned that instead of coming back with the same availability she previously had, she now had time constraints, needing to be back to pick up a family member at 2:00. This had prevented us from using our full allotment of hours, waver funding. Because communication had been so poor, I hadn’t realized our permanent aide would be coming back with time restrictions and had misinformed my son as to his schedule upon her return.

While this is happening, my husband’s schedule is in flux, as he’s told they would begin annual overtime early and it would likely last through September. After a couple of weeks of overtime, he was put on notice that they would not be working overtime for a week, but he should expect to work overtime unless otherwise notified. After 3 or 4 weeks overtime ended, as other departments were behind. They were still told to expect overtime unless told otherwise. I was struggling with extra chores at home, trying to take up the slack, while also dealing with increased chronic pain.

I lost the use of my power chair nearly 3 weeks ago, about the same time as all this upheaval with the change of aides. The left motor seized, AGAIN, for the 3rd time in 8 years. I tried to get it repaired, but discovered that the insurance company hadn’t paid for the repairs that were pre-authorized in November last year. Since they hadn’t paid for last year’s repairs, the company wasn’t comfortable repairing the chair again. I currently have no idea when, if ever, I’ll get my power chair repaired. This is causing a lot of pain, forcing me to be on my feet, to stress my spine and joints, to push myself beyond my pain threshold.

There have been so many changes, so much disruption and I’m trying so hard to accommodate everyone else around me, I feel like I’m getting lost in all of this. I need help with daily things, I need some accommodation, but I can’t really ask for it, because everyone else is in need of understanding.

One of the last times I had a conversation with the agency that facilitates our waver hours for my son’s services, they reminded me that Managing Employers (my role in my son’s services) are not to schedule to accommodate their staff, but that the staff is supposed to accommodate our schedule, our needs, schedule around their working hours. I’m not sure why they reminded me of that, perhaps they are noticing the amount of hours being missed due to medical issues and scheduling requests by our aides.

I’m feeling a lot of confusion, a lot of trouble remembering what needs done and when. If it weren’t for Sidney reminding me about turning in time sheets and doctor appointments, he’s very good at remembering dates and times, I would be a real mess right now.

I have a doctor appointment this week, so I’m going to discuss this with my doctor. A friend reminded me that memory issues intensify when a woman begins menopause and I know I’m on that threshold, as I’ve been experiencing symptoms for a long time now. I hope things will even out a little bit, we’ll get some regularity and routine re-established in our lives. I know it’s not possible to have things run smooth all the time, oh how I know that… but some stability and structure would be nice.