Evening Care

Well, it's happened. I knew it would happen. It had to happen. It's just a part of losing control over the muscles of my body. As of Monday, Home Care will be in at 9:30 PM each night to put me to bed. That means taking off my compression socks, removing catheters or diapers, getting me out of whatever pants I might be wearing, putting me into evening wear of some sort, and putting me into bed.

That last bit, putting me into bed, is optional. Certainly I don't want to go to bed in the middle of a party. Some nights, if I am out, I won't even be home by 9:30 PM, so those nights I will havre to ask someone else to help with my socks, or I will have to sleep with them on. Regardless, I am at a place where both dressing and undressing have become problematic. Such is life with ALS.

My hope is that this new level of support does not predicate a new limitation on my life. It is my hope that evening care will be focused on getting me ready for bed, or at least out of my daily vestments and into evening wear. This can happen no matter who is visiting. When I am home alone, my hope is that this change in care will provide the impetus for me to go to bed earlier, to get more sleep. It seems that 12 hours is not enough these days. I am tipping over to where I sleep more than I am awake.

The next step? I don't know after this. When the time comes where I can no longer use my arms or hands at all, that will be bad. That will mark the final end of my independence. Once I can no longer eat or drink on my own, that will mean a level of care which cannot be provided in my home. I am not looking forward to that day. I wasn't looking forward to this one either. There is, and was, nothing I can do to stop these changes. My job is to decide what to do once they arrive. For this one, I will take it as helpful. I'll let you know how it goes starting next Monday.