Mum appeared to be improving on the road to her recovery and then we hit a series of road bumps. First, slow improvement and the doctors don't exactly know why. Lots of possibilities thrown out there, none of them nice ones. So we try a drug know to help kids with ADHD. It seems to help somewhat. She's more focussed and has reached the highest level of functioning since the initial surgery.
Then, an episode and a visit to emergency. Funnily enough, this is the day she is most lucid, responsive. Seizures are common for folks with brain injuries but the doctors at emergency can't agree with the doctors at the rehab hospital who think the collapses might be heart related. Battery of tests later and nothing much is proven. Unless an event happens to be witnessed or takes place during a scan, it's hard to prove anything. What it means is she's off the drug that helped her focus and now on something to stop possible seizures. No seizures but also less energy and reduced ability to focus.
This is when the social worker starts to talk to about long term care. WTF!! What do you mean she might not come home after the rehab is over. We can't deal with that idea, but we visit the homes and make our choices, hoping it won't ever be necessary.
At a follow up appt with her surgeon, we are told she has "water on the brain" and needs another operation. Heart plunges. But this accounts for why she's talking less and is less and less able to walk, even with help. I'm checking out lots of videos on Ventriculostomies and Hydrocephalus.
Surgery takes place the following week. We are expecting fast recovery. Nope. Mum's back at level one - just like after the first surgery. All the progress she's made over the summer and fall is gone. She isn't speaking at all, needs help to be fed and has no energy. Then, another episode. No need for emerg this time, thank goodness. And then, the offer arrives from a nursing home near us. You have to take the first offer just to get into the system. Then if a space becomes available at a facility you prefer you can move.
We move her into the home and watch her slowly gain strength and dexterity. She's still not able to speak more than a few words a week. Sometimes we get to hear them. Sometimes it's some stranger who witnesses this little miracle. Progress is incremental - not the exponential we are hoping for. But, after several weeks, she is speaking more (few times a day now), is regaining strength, eating well (if slowly) and looking brighter and brighter. An MRI shows that the procedure is working and the water in her ventricles are draining, but at what rate of flow, we can't quite tell yet. But something must be working because she is bright, alert and getting back to what she was like in the later summer/early fall.
Ever since my mum's second brain injury in July, people have been counselling me not to project too far in the future but to stay in the now. It's a nice concept but it's difficult to practice. How do you not hope and wish that things will improve without imagining it improving? Without looking for progress markers, crossing them off when you meet one and throwing another one out there ahead of you. I remind myself that I can't go back into the past and change things and I can't know the future. The only thing I can do is deal with the situation in front of me now. Who is my mother today? What does she need from me today? How can I love her best today?
I'm trying to stay in the now but sometimes I can't help taking a bit of a mental vacation into the past or project a tiny bit into the future.
