Friday, June 17, 2011

The Unknown

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

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


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.


Kathy Lowrey said...

I just love it when the Dr gives you a big long technical word that sounds like gibberish, then looks at you like you know what that is.

I wonder if they get the same looks as my grandsons give me when I say something new LOL!

Glad you thought to ask for a copy of the MRI results. New Home is indeed a little slow in communication.

Wed seems like a long way away.
Hopefully you and Robert will have some answers.

Joan Oliver Emmer said...

I'm not a religious person but when I get overwhelmed I sometimes just throw up my hands and take the attitude of "what will be will be." I see that attitude in your starting to plan Robert's 50th! I hope that you all get to celebrate it in style and that we'll all still be friends, sharing in it via cyberspace!

Heidi Alberti & Atticus Uncensored said...

I've said this before & I'll say it again -- Robert is So incredibly fortunate to have a sister like you, Trish! The medical news is hard enough to decipher, but dealing with The Home is equally frustrating.

I will definitely keep Robert in my healing mediations & prayers (and you too, of course! you need a lot of stamina to navigate Robert's health and living conditions)

I'm so happy we had the chance to chat the other night, Trish, & really look forward to getting together soon! I am even more convinced after chatting with you that you Will change the face of caregiving and help others in your situation.

Please update us after the appt. Wednesday. and maybe you should look into shirts with snaps instead of buttons (like those groovy cowboy shirts :) )

Heidi & Atticus
"commentary to give you paws..."

Fiona Stolze said...

I'm like you. I'm not terribly impressed when people start throwing specialised 'big' words around. It would be so much more helpful if they would just slow down and take the time to give a detailed explanation of what they really mean.

I can totally understand that you want to know more and have clarity. What is it reasonable to expect.

Your brother has been through so much in his life and as you say, there's bound to be a lot of activity going on there anyway. It's just nice to know where you're at.

I think you are doing such an amazing job.

Fiona Stolze

bccmee said...

It's so difficult to face the unknown. Like you, I always want answers! Humans are complex systems and there are never simple solutions to whatever ails us.

My best wishes to a happy birthday 5 years hence!

Trish Hughes Kreis said...

Wednesday does seem like a long way off, Kathy, but I trust the neurologist and am confident she'll be able to fully explain these results. Heck, for all I know, the results show no change! (If I didn't like my sleep so much, I might still consider med school so I could fully understand all of these med terms). :-) Thinking of your grandsons cute confused faces brings a smile to my face. Thanks, Kathy!

Trish Hughes Kreis said...

Joan, I understand that attitude -- I will do what I can to slow his decline (if that's possible) but have to accept what I cannot change. I too hope we are all friends in 5 years and will update everyone on Robert's big 50th bday bash!!

Trish Hughes Kreis said...

Heidi, Love the cowboy shirt idea! He went through a cowboy phase when he was younger so think that would be an easy sell. I enjoyed talking with you too and can't tell you how much your faith in me inspires me!

Trish Hughes Kreis said...

Thank you, Fiona. The brain is so fascinating to me (and so resilient). I don't feel so amazing but am amazed that after everything Robert has gone through, he still not only jokes around but prays for other people (although I think one thing he prays for is that I go to church more than once a year!). :-)

Trish Hughes Kreis said...

Bccmee, That's so cute that you wished him a happy birthday so early! Love it! I'd like to think, in 5 years, I'll be following a tremendously talented graphic artist/movie editor to see what great work she's done and you'll still be reading my blog!

Franziska San Pedro said...

You are an incredible sister and Robert is a lucky person to have you in his life!

I don't like it either when doctors just throw words at you.. Hopefully, you will get more clarity this week.
I will be thinking of you and your brother and hoping you will get answers soon.

Franziska San Pedro
The Abstract Impressionist Artress

Trish Hughes Kreis said...

Thank you, Franziska. I'll be armed with questions for the neurologist on Wednesday. It will be good to know how much has changed since his last MRI and what it all means. Will keep you posted.

Judy Stone-Goldman said...

Trish, I had no idea Robert's health was declining this way. So very difficult for you both. This is Tuesday, so I believe the appointment is tomorrow. I'm glad I read this before the appointment date so I can add my mental strength and meditation to what you learn.

You are quite amazing with your courage and willingness to forge ahead. I cared for a father and an aunt as they declined in dementia (different, of course, because it was more age appropriate and not a life-long concern), and the medical background I have really helped. I'm not a doctor but I have some training in neurology, and I understood brain disease. It made a huge difference, but certainly didn't solve the frustration I felt at not being able to control the situation or the horror I felt at watching relatives (especially my father) become someone different.

Whatever you learn, know that we are with you in spirit. And of course, Robert is with you for real, loving you and appreciating you.

Judy Stone-Goldman
The Reflective Writer
"Word maven loves--and learns from--ordinary life"

Trish Hughes Kreis said...

Judy, Thank you for your kind words and meditations. I really appreciate your support. We will see what the neurologist says today and I even question whether or not my perspective is skewed since I'm so close to the situation. Maybe I think he's declining faster than what the actual tests show (although my other brother hadn't seen him in a while and noticed a decline, particularly with the walking). I'll post again after the appt to update everyone. Thanks again for everything.

Clicking Frogs said...

I can totally sew buttons on for you ;-)

Trish Hughes Kreis said...

Awww! Which is why you're my BFF. :-)