September 28, 2009 A Difficult Day

Karen, from Hospice, was the first to arrive today and gave Mom her bath and changed her bedding.  It made Mom feel so good and Karen is so gentle with her. 

Joyce came and prayed with Mom and gave her communion.  She concentrated on the issue of trust today.

Mike brought Mom some little cups of sloppy joe, coney dog, and shredded chicken to choose from for lunch.  She tried a little of each, but wasn't really hungry.

Thank goodness it's Monday so the angels of Hospice will be here.  Today is Lisa's turn to be Mom's nurse and she got here about 1:30.  BP 110/60.  I had to be gone for awhile and when I got back Lisa had left to get Mom a prescription for something to help with the sores in her mouth.  Krista filled me in on things and I knew we had a very difficult decision to make.

I asked Lisa to come back in the bedroom to explain to me everything she had told Krista.  Lisa said that she feels that Mom has plateaued at this point.  Her BP is at a good point and she feels the chemo treatment was what brought her to the point of near death last week.  She thinks that it is probably pretty much out of her system.  However, she now points out that the cancer is advancing rapidly.  That is why we are seeing the new and large tumors, the itching from liver complications, severe weakness, pale color, new agitation, decreased appetite and increase in sleep.  It has metastasized.

We talked about the fact that it is increasingly difficult to get Mom from the bed to the commode now.  Definitely impossible for one person.  I told her that Krista is worried about getting back to work, and that I knew there was a hoist that could lift someone out of bed onto the toilet and asked if we could get that.  Lisa said that there is such a thing, but it wouldn't be possible as Mom is too weak, and it has to be on either tile or wood floors.  She said if Krista leaves we will need to place her in a nursing home.  This crushed me because we know that she never wanted to go back to a nursing home after her stay in one when she had back surgery.  It was a horrible experience for her.  But then I realized Lisa was talking probably no more than a couple of weeks.  Somehow we will keep her here at her home.

I then asked Lisa about being honest with Mom about her cancer spreading.  After talking a long time, I decided that it was time to tell her.  I talked to Kathy and Krista and they agreed.  Mom does NOT want to be bedridden, she's said this so many times before, and if confronting her certainty will make the process move along, then I believe we should do it.  Her body is aching from laying on her back all the time.  She has a sore spot on the bottom of her spine that hurts her all the time, but it's not an open sore yet.  Her legs get so tired and heavy and are beginning to pain her.  Her back and legs itch and she can't scratch them.  We have to feed her because her little arms just can't lift the spoon.  I know she doesn't want to live like this when there is no chance she'll improve.  So I know I have to tell her.

Emma comes and she and Krista wash Mom's hair.  Ohhhh, Mom loves it so much!  Emma rubs and massages her head for a long time and it feels wonderful to Mom.  She always had her hair done twice a week because her appearance is so important to her.  The last time she had it washed was September 4, over three weeks ago.  What a gift this was from Emma!  Mom and Dad are Emma's son's godparents so there has been a special bond between them for years.  Their love is mutual.

When Emma leaves, I ask the girls to leave also so I can talk to Mom alone.

Now this is the difficult part.  I had taken half of a Xanax, just to keep it together so I wouldn't cry and could talk maturely to Mom.  I went in and sat next to her bed, held her hand, and said I needed to talk to her about something.  She said , "Oh no, not again."  I told her that Hospice felt the chemo was pretty much out of her body, and said quickly before she got her hopes up, but your cancer is spreading rapidly.  At that point I started to cry....so much for Xanax help.  She asked how they know that it's spreading.  I told her about the tumors, itching and other things.  I can't even articulate on here how hard I was crying.  We held hands and I noticed how tight she was holding my hand.  I didn't know she had that much strength.  I'll  always have the vision in my eyes of those little tears running down her cheeks.  I laid my head on her chest...so that she could comfort ME.  ME, I should be comforting her.  But she's my Mom and has always comforted me and I needed that more now then ever.  We talked about the fact that it's been 13 years since she was first diagnosed with cancer, a contained tumor in her kidney, and the kidney was removed.  We said she's had a bonus 13 years.  I reminded her of all the wonderful things we've done in the past 13 years with that added time.  Then I talked a lot about heaven.  A lot.  I told her how I believed it to be and reminded her of those loved ones that have gone before her, especially Dad, that would be waiting on her. 

On the back of the Hospice book, Gone From My Sight, is a wonderful story by Henry Van Dyke, and I read it to her.  It goes like this...

"I am standing upon the seashore.  A ship at my side spreads her white sails to the morning breeze and starts for the blue ocean.  She is an object of beauty and strength.  (I told her that was her.)  I stand and watch her until at length she hangs like a speck of white cloud just where the sea and sky come to mingle with each other.

Then someone at my side says, "There, she is gone!"

"Gone where?" I ask.

Gone from my sight.  That is all.  She is just as large in mast and hull and spar as she was when she left my side and she is just as able to bear the load of living freight to her destined port.

Her diminished size is in me, not in her.  And just at the moment when someone at my side says, "There she is gone!" there are other eyes watching her coming to them, and other voices ready to take up the glad shout, "Here she comes!"

And that is dying."

I will always remember this story and find comfort in it.  I hope Mom did, too. 

She said that she knew that the cancer was still there.  She said she knew something was wrong by the whispers behind her back.  I apologized for that but told her it wasn't always about that, that often we spoke quietly so she could rest.

She said she is ready to go whenever God chooses, that it is His will.  I told her it would hurt me to think when I see her lying and staring that she might be thinking of something that is frightening.  She said no, that won't be what she will be thinking. 

I told her that death is not punishment for the dying, but I felt it is for the ones left behind.  I reminded her that she is also my best friend.  She said that she doesn't want us to cry all the time until it happens.  I said we'll still have lots of funny moments and laughter.

Then she started to stare and I asked her what she was thinking.  She said she is thinking of some things she wants to be sure are done.  I asked her if she'd like to tell me and I'll write them down and she said, yes.

The first thing she said is she'd like Emma to do her hair.  I told her I knew that she would.  Then she told me how she would like a few things divided up between us.  She said she hoped there would be no fighting over things and I assured her there wouldn't be. 

Next she said that she didn't want us to spend a lot of money on a casket.  She said that it was her and dad's wish to have a little money for the three of us and that with her going now, she was glad she wouldn't eat up all their money.

She told me not to put a new roof on the house now.

She said that she'd like a "Thank You" put in the newspaper to everyone who has been so good to her.  We didn't do that for Dad, as we tried to send everyone a personal thank you note, but Mom said it always bothered her that we left someone out and she wants us to do that for her.

I asked her if she wanted to go as for as choosing her clothing and she said yes.  I told her that I had thought she might like to wear the black and white jacket she loved so much and she said, "I don't like to see black on dead people." !  We laughed.  I told her she always looked beautiful in red and that she loves red so we found a jacket she liked.  She was worried it would look too big on her and I tried it on and told her we were about the same size and she thought it looked okay.

Mike came in after we were finished talking, then Krista came home with pizza.  Mom ate about 5 bites.  She and Krista had a moment together, and then we tried hard to go on with a normal evening.

But I couldn't get it together.  I didn't cry in front of Mom anymore, but spent much time in the bedrooms going to pieces.  Then I started to doubt whether or not I should have told her.  My sisters said I did what needed to be done, Tina, Mike, Janet, Darla and Jeanne also had encouraging words for me.  I went to bed, still not sure.

Mom had a fitful night.  She was semi-conscious all night and when she'd awake she was very confused.  She cried often and said we weren't taking care of her.  She thought she was in her wheelchair, tried to get out of bed, completely uncomfortable, legs aching and heavy, and many more things.  She finally fell asleep from 4:45 to 6:30 and awoke confused again.  She fell asleep about 7:15.

I may think of more things that I'll want to add to this post later.