The Unknown

“Large area of encephalomalacia” says Robert’s recent MRI report.

Well, of course! How obvious! That explains so much!

Huh??

Even the wonderful world wide web doesn’t give me much more of a definition than “softening of brain tissue.” I don’t have Robert’s previous MRI report so don’t even know if this is something new and won’t know until we see his neurologist on Wednesday. I just know I wouldn’t want my brain to soften and am doing mental exercises as we speak (not that I even have the foggiest idea if that helps prevent softening).

Because we want to rule out the possibility of a stroke, Robert had an MRI last week. He is having more memory problems, dragging his right foot more than usual and also having trouble using his right hand to button his shirts. (Oh my god. Please tell me I don’t have to learn to sew. Sewing large buttons on each of his shirts would take me so long I’d have to quit my job and hire a small army of seamstresses to accomplish the task. Add to my to-do list: search the internet for large buttoned shirts.)

The neurologist didn’t order the MRI but she is the one who will have to decipher it so I insisted on getting a copy of the MRI report to give to her. (We all know New Home can’t be trusted to automatically supply a copy to her.). The MRI report does include a note that there is no hemorrhage or mass which sounds like a good thing to me. I’m hopeful this means he didn’t have a stroke and it seems to rule out a brain tumor but everything will be explained on Wednesday. If only I had gone to medical school!

I realize Robert’s brain is going to have all kinds of things going on in there that are abnormal due to the epilepsy and lifetime of seizures. What I really want to know is if his brain is deteriorating and, if so, how quickly and what is his long-term prognosis?

Will Robert live to see his 50th birthday (which is only five years away)? I want the neurologist to tell me so I can start planning his party!

It’s been quite a dramatic decline for Robert. In 2008, he was living independently with his companion. He was able to keep track of his medical appointments, arrange transportation to the doctor and walk to the drugstore to pick up all of his medications. He was unable to take care of his finances and was taken advantage of in spite of our dad (apparently, half-heartedly) overseeing this area of his life.

He has since declined to the point of having to constantly use a walker and occasionally use a wheelchair. He sometimes will sit at the dining room table waiting for lunch only to be told he ate lunch an hour before. He is now incontinent and struggles to wipe himself completely (sorry if this is too much but I see no useful purpose in sugar-coating his decline). He talks with me but mumbles so much I have to ask him to repeat what he is trying to say.

He has great abilities as well (he continues to play cards and do his word search puzzles and enjoy making friends) but looking at what he can’t do now contrasts starkly with a mere three years ago.

For caregivers, the unknown is one of the most frightening aspects of caring for a loved one. How long will this phase last? How much time do they have left? Is this new symptom a sign of further deterioration to come or is it just an anomaly with tomorrow being back to normal?

We want a map. We want definite answers.

I want to know if Robert will make it to 50.

The caregivers I know would love to have clear cut answers because we are planners! Once we know what we are dealing with we can come up with a plan (with a few back up plans thrown in for good measure).

As it is, we come up with plans anyway even if we don’t know what we are dealing with or what is in store for our loved ones tomorrow. We plan and we search for information and grill the doctors.

Most of all, we hope.

We hope for the best, we hope for comfort for our loved one and we hope for more tomorrows.

As for me, I’m going to start planning Robert’s 50th birthday party no matter what the neurologist tells me the MRI says.