Today was my first day back at work in about five months. There was a great deal of anxiety associated with it, both for me and for my husband. There is a certain crazy routine that we had developed over the past couple of months and adding in a return to work means a lot of shuffling around. Today was the first day and it went reasonably well. I started my return to work with a half day today and then will do another half day on Friday – which seems the best way to ease back into the dual roles of caregiver and employee. I doubt that the caregiver role will ever diminish significantly. My husband’s new reality is that he has limited mobility, his T6, T11 and T12 vertebrae are shot, there’s no getting around that. He’s shrunk about two inches in his height which is small potatoes when compared to the range of motion that he has lost. So he will continue to need assistance to do some very basic daily functions – such as putting on his socks. The frustration that accompanies the impact of his limited mobility is considerable and we are continuing to talk through focussing on what he can do and creatively looking for workarounds for what he can’t do. It is, however, very easy for the frustration and annoyance to sidetrack our problem solving.
Regardless, today was the first step forward and it was a good one. The house didn’t burn down, there were no crises to deal with, but there was a little bit of despondency or wistfulness that was evident when I returned home. I suspect that my return to work emphasized his own early retirement. The fact is this disease derailed all his plans – it retired him from the workplace long before he was ready. Although he should be ecstatic about the reasonably good response he has had to his treatment we are not there yet. He’s not happy; he is sick of being tired, tired of worrying, yet continues to worry about being sick – it’s a vicious circle. Anyway the first day is under our belt and hopefully the next one will be uneventful as well.
His sister remains hospitalized and we try to visit her or speak with her daily. Tonight it was a phone call. She continues to have a tough time with her rehabilitation, there is a persistent nausea that she can’t seem to shake. Today was a difficult day for her and consequently she didn’t attend her rehab exercises. Although she’s frustrated by the length of her hospitalization she knows that she is incapable of managing on her own at this point. There are certain physical functional thresholds she has to achieve before she can be released, even to a convalescent home. At her present rate of progress it is looking likely that she will be spending her Christmas with the hospital staff. I suspect that a couple of solid days of feeling well would make all the difference in motivating her to push hard on her rehab routine. There’s no doubt it is lonely being in the hospital, hopefully we see some forward progress there soon.