Fear Has Crept In

Wednesday June 19, 2013

I went to visit Mom today at Saint Mary's Rehabilitation Hospital. 

I have to say that the second I walked in I could tell things were... different.

Before I get into today, let's see if I can manage some chronological order here:

Friday June 14 was her first day there.

The folks at my work were kind enough to let me work from Dad's house that day so I could do some laundry for them and bring up a fresh suitcase of clean comfies for Mom, as well as do anything around the house that needed to be done in preparation for her return. 

Mom was being transported from Novi via ambulance, which is standard procedure for this sort of thing, and I decided I wanted to meet her & Dad at the hospital when they got there.  I knew she was scared.  I wanted her to see familiar faces when she arrived.

I spoke with her sisters throughout the day and asked them to meet us there as well.  I felt that Mom would need all the love and support we could muster when she arrived. 

So when she got there, we could tell immediately that she was exhausted, and very hungry.  She kept referring to her ride there as one being in a "really big truck".  Like, semi truck.  We told her it was an ambulance, but she insisted it was a "really big truck".  She slept most of the way there, and was probably pretty groggy.

None of us had seen her since she was admitted back into Novi the week before (Read that post), so we were all anxious to speak with her and find out how she was feeling and doing.

She was not allowed to get out of bed without a nurse.  Under no circumstances was she allowed to do anything without a nurse present.  She is a "fall risk".

We spent most of the late afternoon and evening there with her. 

We met her doctor.

We asked a lot of questions.

We got answers to most of our questions.

Basically, she is in rehab for many reasons.

To learn to cope with her health condition, and the realities of her new way of life (mental rehab).

To learn to cope with her deficits from the tumor - surgery, brain trauma, and brain cancer - (physical/speech rehab).

To learn to be independent again, but differently than before.

To learn and understand how to live with this type of cancer, and the treatments that were to follow.

Rehab isn't just for her either.  It is for us, her family, as well.  We need to learn how to speak with her in a way that she can answer.  We need to learn what her deficits are as well.  We need to learn how to let her be independent; what she can do, and what she needs assistance to do.

We learned many things that first day.

We learned that her simple math and number knowledge had diminished.  For example, her doctor drew a circle on a piece of paper.  He then asked Mom, using the numbers 1-12 to draw what she thinks a clock would look like.  She did her best, changed some things around a little, and like a school girl, proudly handed the "clock" back to her doctor.

The number 12 was where the number 9 or 10 would go.  1 was at the top where 12 would go, followed by 2, 3, and 4.  After number 4 came number 7, and so on.

But man, was she proud of herself!

We learned that tasks, and the different steps we take to complete those tasks, were going to be difficult for her.  She needed to remember how to do things, in which order, in order to complete tasks.  Taking a shower, for example, and which steps come in which order.  Making a sandwich, getting dressed, daily routines.  These were all processes that she could see complete in her mind, but could not determine the order in which to take the steps to complete them.

We learned that certain parts of her memory were being challenged.  They aren't gone, they just need some prodding to come to the forefront.  She gets stuck on words.  For example, she would say that she wants to eat an... an... ummm... uhhh... and then she gets very frustrated because she can't think of the word that matches the picture in her head of what it is she wants to eat.  (More about this later in the post).

We learned about her cancer.  We learned more about the tumor, where it was located (Left Parietal Occipital), and which functions that part of the brain controls.

We learned which medications she's currently on, and which ones they will add or take away in the coming weeks.

It was a very emotional day. 

Mom was exhausted and extremely emotional. 

Dad was exhausted yet still being the rock that he is for her.

Her sisters and I were emotional (privately) yet optimistic and carried the mood in the room - so Dad didn't have to - and made sure that Mom knew that she was safe and in good hands.

The next time I saw her was Sunday afternoon (Day 2).  She had had a full day (3 hour chunks of rehab, twice per day) on Saturday and was pretty tired.  I knew her first day would be exhausting, so I stayed away to allow her to rest when she needed to.

She seemed really good.  She had come to terms with where she was and why she was there.  She seemed in good spirits. Dad seemed rested and much better. We talked for a bit.

I asked her what she did in rehab today.  She couldn't remember.

Then, I changed the question.  I asked her if she read anything in rehab today.  She said yes.

I asked her if she wrote anything in rehab today.  She said yes.

Specifics.  No open-ended questions.  I picked up on that really quickly.  She hadn't had her physical therapy yet that day, just speech, so I knew she hadn't done any walking yet.

When I left, I felt good.  She was tired, but I knew they would tailor her therapy to her needs for rest.  I also knew that they would push her to her limits, just so that she could see how far she is coming, each and every day.

My next visit was today.  Oh boy what a difference three days makes.

Like I stated earlier, I knew the second I walked in that things were different today.  She was eating her dinner, and I did not receive the warm welcome that I received for my previous visits.  She barely smiled.  Her answers were short and to the point.  The conversation felt forced, completely unlike any previous visit I had had with her, anywhere, ever.

Dad and I talked shop for a bit (we both work in the same industry) while she finished her dinner.  Then Dad asked her if she'd like to go for a walk in the garden.  A walk for her consists of a wheelchair ride down to the garden.  She cannot walk without assistance yet, and we did not have access to a safety belt, so she sat in her wheelchair, in the sun, and we talked.

She started to open up about the last few days.  I read her activity log book that they keep.  It shows daily activities (rehab) and the accomplishments she's made.

Dad had been there with her for her rehab session for half the day.  So, he had many stories of goals she had met that day alone! 

For example, there is this board in the rehab room.  It's about 4 ft by 4 ft, and it's a touch screen with a backlight.  Mom is in front of the board, and lights will appear randomly, in different areas on the board.  When she touches the light, it registers her speed and accuracy with which she touched the light.  Her first try, she touched 30 lights in 75 seconds.  By the second try, she had knocked off 25 seconds from her time, with the same accuracy.

The next exercise was touching the lights, but this time they had letters in them.  She was to touch the lights, and say a word that represents that letter.  For example, the first light had the letter "A" in it.  She said "Apple".  Then the letter "D" showed up, she said "Dog".  When the letter "C" showed up, Mom said "C3PO".  Everyone stopped.  Dad busted out laughing.  The therapist had a confused look on her face.  Mom says, "C3PO.  Haven't you ever seen Star Wars?  Duh!"  And then continued on with the rest of the exercise.

When Dad told me this story, he was still chuckling!  What a hoot!

She told the time today!  This is huge!

Dad also learned (remember the "stuck on a word-can't remember which word she wants to say, from above?) that she gets frustrated when she can't think of the word she wants to say.  Instead of sitting and waiting for her to think of the word, we need to help her think of it, and walk her through the thought process of recognizing words.

Using the example above, "she would say that she wants to eat an... an... ummm... uhhh... and then she gets very frustrated because she can't think of the word that matches the picture in her head of what it is she wants to eat." we will respond with questions.  What color is it?  What type of food is it?  What shape is it?  And she would respond with Red, a fruit, round, juicy... APPLE!  Instead of being stuck in her frustration, she was able to think of the word she wanted, and move on.

Anyway, we spent some time celebrating her victories from the past few days, and all of the things she has learned.  And then she started to loosen up a bit and began talking about how she had been feeling.

She is pretty depressed.  She feels safe in the hospital "bubble". 

She is scared to go home and leave her "bubble".

She is petrified about Chemotherapy and Radiation treatments.  So much so that she won't even broach the subject.  She knows that she will address this with her therapist, but nonetheless, she doesn't even want to speak of it.

She is frustrated with what her vision is of what she has become.  She feels she's been "reduced" to something much less that what she was before she got sick.  There's no amount of encouragement that will change this view I'm afraid.  She sees us celebrating her victories, no matter how small or big.  She doesn't see them as victories.  She sees them as more battles.  More shortfalls.  More deficits.

She is speaking with a therapist on a regular basis, and she is being treated for this depression.  I myself am familiar with depression, and I understand it, so I was not surprised to see this.  I actually expected this to happen.

The three of us talked in length, but Dad and I mostly listened, without giving much input, to how she feels right now.  We were her sounding boards.  I think the things she is feeling are normal for this type of situation.  Dad and I also expressed to her that we, as her family and caregivers, are struggling as well.  We get upset seeing her sick.  We get frustrated like she does.  We have a hard time grasping all that has happened.  When the lights go out and no one is around, all we're left with are our thoughts.  As her family, it's extremely difficult to deal with.  But as my dad put it so eloquently (HA!), we just fall asleep, and wake up the next day to do it all over again. 

That's all we can do.

Over time, things will continue to change.  They will get a little better, then get worse, then better again.  It's the roller-coaster ride that we can't predict the next turn.

We will remain strong, and vigilant as we uncover what each twist and turn of this journey has to bring us.

As Mom rides this ride, sometimes so very lonely, we will remind her that she is NOT alone, and we are right here with her through every turn.

Here's the link to her fundraiser page Mom's Fundraiser.  As you can imagine, the expense is already enormous given her

initial diagnosis (Never Give Up The Fight - post),

her heart attack (A Bump In The Road - post),

her surgery (Nothing Short of a Miracle - post),

her second admission post-surgery (Closer To Home - post) 

and now a lengthy stay in a rehab hospital.  If you can give, please do.  If you cannot, please help me think of creative ways to raise money to help out - there are a couple of events already in the works.  If you know of Foundations or Organizations that help those going through cancer, please send them on.

Thank you for your continued support.  The prayers and well wishes do the most work, and are needed to continue.

May The Father place his healing hand on her now, and for the duration of this journey.  Whether she needs it on her brain, her heart or her mind... may He heal her and make her whole again.