One year ago Mark and I learned his AMN had compromised his cerebrum and things would drastically change for him mentally (and physically.)
In this last year since finding his cerebral AMN complications, Mark has had three Sepsis infections (which have only accelerated his disease) caused from repetitive urinary tract infections. AMN/ALD has also quickly taken his ability to work, drive and read. He can no longer create furniture or work with his hands. He can only walk but a few feet and needs a minimum of a two-person assist to do even that.
He also requires supervision to eat and drink and can no longer control his physical movements. For example, he randomly opened the car door while I was driving the other night, so into the back seat he must go moving forward, because we have child locks back there. He also inexplicably snagged an ice cube out of his drink and shoved it into his mouth a few weeks ago. He spit it out before something awful happened, but he can’t explain why he did it — it was completely involuntary.
Normal sequence movements continue to be an issue but we’re using simple instructions and familiar cues to help his brain remember how to do them. (Putting his arm in a sleeve, for example.) Unfortunately we can no longer sleep together because muscle spasms cause his legs to move and shake and he has fallen out of bed. He now needs a secure hospital bed with rails to keep him safe, but that must remain on the first floor, so nights are lonely for both of us.
It’s been a long, trying and exhausting year. I’d like to say I’m looking forward to 2019 but I’m not. I know things will get even harder as Mark’s brain continues to swell and his body deteriorates. I have exhausted my FMLA options and had to leave my job at EBSCO to care for him. This has been a fiscally challenging and emotionally difficult transition for me as I’m a very creative person and I need to be productive to feel fulfilled. One day I’ll return to the marketing and PR world, but I know what the cost will be, and that’s foresight no one wants (trust me.)
With all this said, Mark has decided to begin hospice care. His physician and palliative care team assured me he has mental capacity to make the decision, but it doesn’t ease my pain. It will ease how much work is involved with his care because hospice provides so many more services and supports for him that he desperately needs. Our nurse keeps reminding me this transition is not a death wish, but since we can’t combat the disease progression anymore, we must focus the quality of Mark’s life, rather than the longevity.
I want to reiterate how much we appreciate those of you who make conscious, unsolicited efforts to continue supporting Mark and visiting with our family. We all thank you. Happy holidays, everyone.