Comments from Dad

 

“Brenda was so helpful. She was an angel. She made things so much easier. Elaine was so comfortable around her. She looked after her so well.”

“Elaine was happy until the day she died. We thought she was going to last a long, long time. 

“She started feeling a lot better with the feeding tube. She went down so fast—we did not have a clue. We were planning on things months down the road.”

“She had been worried about the girls (my sisters and me) for a long time, getting the things all sorted out. I was doing what she wanted to do.”

“She wanted to die at the hospice place. They would take her there as things got worse. If she had known she was dying, she would have said something. She did not want to put a stigma on the house . . . this is where she died. She is buried out yonder because she did not want us to visit her grave all the time.”

“I wish she had a dog. I think having a dog would have been comforting to her.” He thought people with terminal illnesses should have dogs because they would comfort them.

One question I did not ask: What were your thoughts as you watched your bride waste away?

 

The things I learned from Dad

 

I sat with Dad and Claudia in the bedroom where Momma died to glean valuable information that I could pass on to you. It would be difficult for Dad to discuss these issues, but I knew I should.

U He stressed you should not put something off, whether it be discussions, decisions, or significant things.

U Don’t put faith in the doctor’s time frame. They don’t know. God is the only one who truly knows. Mom died twelve days after she got her feeding tube. 

U He mentioned calling the Social Security office to claim a disability, especially with Mom having ALS. It took two to three months to get her first check. She only got one disability check even though she could not work for a long time. From her diagnosis to her death, it was only about nine months. Search on the web under Social Security disability.

U The ALS Association of Georgia had good resources and information.

U Dad got a power of attorney because Mom couldn’t sign her name. His financial advisor suggested they get joint accounts because it makes it more manageable.

U Set your investments as (Payable On Death). A POD is any account, investment, etc., given to a specified person when you die. You don’t want to go through a trustee or a banker to disburse money.    

U What have you learned from reading this book?  U

Spring break

I was planning to leave right after school on Friday, March 12^th, to go see Mom.  We only had a half day of school, and I expected to leave around 12:30 p.m.  Our manager at my cookie shop became ill, and I needed to help at the shop especially because we had a birthday party.  Someone had to get in the cow costume, and I knew my help was greatly needed.  I called Dad to make sure it would be okay to come down a little later.  He said he would be there to take care of her, and it would be okay.

The drive down was hard.  I thought of Mom a lot.  When we got there, Mom was in the back bedroom.  It was late, around 9:00 p.m.  She opened her eyes and gave us that ole’ familiar smile.  The kids came in and told her hey, and I began to talk with Dad about taking care of her for the night.  Mom, asked me to stay in the back bedroom, and I told her I was planning on it.  Dad did not stay up long.  He was physically exhausted.  I kind of was thrown the ball, and I had to run with it.  I did not know much about the feeding tube or the BIPAP machine.  I really wanted to get a shower and asked if Lauren could listen out for her.  Mom did not want me to leave her side, so I did not.  After I saw Mom, I thought the Lord was not going to physically heal her.  My goal for the week was also not going to be accomplished.  Mom was not going to get out of the house.

I don’t want to know anymore (part I)

 

One of the hard things concerning Mom’s health worsening is what exactly I should tell my children.  I had just told them about the feeding tube and if she was in the hospital they may not be able to see her.  Ashton told me I could videotape her then show him the tape so he could see her. 

We read the kids their devotion tonight, and the story was about Sapphira and Ananias being deceitful.  The result was they both died.  Afterward, Lauren asked to see the devotion book.  She took the book and looked over it for a few minutes.  She said she did not like the devotion because it reminded her of Granny (because they had died).  When I went into her room to tell her goodnight I wanted to update her on Mom’s condition and prepare her for the upcoming week.  When I started speaking she replied, “I don’t want to know anymore.”  She knew it wasn’t going to be good news and would rather block it out instead of hearing what I had to say.

U   Have you put careful thought into telling children information about the loved one?  U

U  Are you being careful not to bring up conversations about the loved one around a sensitive child?   U

I talked with Joann today so I would know all the ins and outs about Mom.  She said Mom had not left the house since she got back from the hospital.  Mom now has a hospital bed at the house and uses a different room to sleep in.  The room has Mom’s bed, Dad’s single bed, and a few chairs for the visitors that come to see her.  A few people from Mom’s church came over today and did a short Sunday school lesson and sang a few songs.  Jamie told me the people from Mom’s church “were loving on her”.  She said someone had manicured Dad’s front lawn while they were gone.  One morning, Dad went to get the paper to notice someone had already gotten it for them and also dropped off some Danishes at the back door.

Joann said Mom basically stays in her pajamas when people come over to see her.  Joann went through Mom’s pajamas and threw out the old and yucky ones.   She bought her some new ones Mom could wear as visitors came by.  She even offered to get her dressed to wheel her around the block, but Mom did not get out.  I asked her if Mom went to church.  When Jamie asked Mom if they were going to church, Mom responded in a way that sounded as if it was not an option.  She said Mom has never taken her wheelchair into church, so she did not know if Mom was embarrassed or what.  My goal this weekend is to get Mom out of the house.  I want to build up her time out of the house, so she may consider going to see, The Passion, with me.

Note:  Photo by my daughter Lauren Glenn.

Mom’s surgery

Mom was admitted into the hospital March 2^nd.  She had to be there by 7:00 a.m.  They gave her intravenous fluids during the day.  Around 5:00 p.m., they performed surgery to give Mom a feeding tube.  She was supposed to be admitted for twenty-three hours.  She was only given a local anesthesia because of her ALS.  This upset Mom because she thought she was going to be "knocked out".  The surgery went fine.  I had asked for God’s wisdom for the doctors.  I am glad they only did local anesthesia because she may not have made it out of surgery if they had put her under.  Mom complained about a few spots that were bothering her on her body.  It turned out Mom had Shingles.

The hospital was going to make her checkout and wait until 3:30 p.m. to see the doctor about the trach.  This upset us because the doctor’s office was across town.  I spoke with Jennifer, and she was frustrated too.  It would have been a patient courtesy for the doctor to come see her.  Here was Mom, just having surgery to get a feeding tube, Dad not knowing much, yet they were trying to discharge her. The reason they were trying to discharge her is because she was pre-approved for only twenty-three hours by the insurance company as an observation patient.

Jennifer did not know how insistent Dad was with the doctors.  I told her to talk to the doctors and stick up for Mom.  She told me she would tell them to kiss her butt.  The hospital decided to admit her.  They fed her through her feeding tube and all was well.  The only thing that really upset Mom was when a nurse accidentally pressed on the spot where Mom had the surgery.  Mom cried.  It is a big deal when Mom cries, because Mom does not cry.

U  Do you have the ability to advocate what is best for your loved one’s needs?  U

U  If necessary, can you speak up and challenge the hospital, nurses, doctors, and the insurance company in order to get the appropriate care needed for your loved one?  U

Jennifer said Dad had been discussing Mom’s upcoming care with her.  He mentioned about putting Mom in a nursing home on the island.  She told me Dad does not understand the ratio of nurses to patients, and Mom would need more care than a nursing home could provide.  My concern was for a nurse to be there to help with Mom, especially at night. 

Joann was going to visit Mom and could give Dad a break at night.  She had to leave her kids behind because Mom had Shingles.  I am going down to see Mom in a week with my kids if the Shingles are gone.  I can delay my trip if I need to.  I was planning to be at Mom’s house for about nine days.  I know the days are going to be very exhausting.  I still want to get Mom to the movie, The Passion, and to push her in her wheelchair to the beach.

The next day, I needed to talk to Dad about a few things, so I called the hospital room.  I talked to Dad then wanted to tell Mom I loved her.  I told her I loved her, and if I did not know Mom always responds by saying the same in turn then I would not be able to tell what she had said.

What’s next? (part I)

Monday night rolled around and Jamie called me to tell me the report from Mom going to her doctor.  Mom really liked this doctor, and she suggested Mom not get the feeding tube or the trach.  She suggested Mom go through Hospice.

Angie, the Hospice nurse, came by and evaluated Mom.  She told us the options Mom had.  They did not have someone from Hospice which could come home with Mom and take care of her.  Our family was to be the caregiver.  We knew Dad could not handle taking care of her anymore and was not an option.  An option was for her to be admitted into the Hospice facility which has twelve beds.  There are two nurses on staff and two helpers which would mean if Mom needed to use the restroom she may have to wait before someone could help her.  She pretty much needs someone with her at all times.

U  Are there suggestions your health care provider can give you concerning negative events/things they know will probably happen to better prepare you?  U

After she got out of the hospital, she could be admitted to the Hospice facility, or get care at home.  If Dad needed temporary help, they could admit her for five days to give Dad a rest, or if she did not like the facility, she could go back home.

At first, Mom did not want anything to do with a trach or a feeding tube.  She did not want any outside help to prolong her life.  Then after the visit to the doctor and getting evaluated by Hospice, she has decided to get both the trach and the feeding tube.  Dad called the doctors from Mayo and now something needed to be done immediately.

Jennifer stayed with Mom this past weekend, February 27^th, to let Dad rest during the night; she stayed up with Mom.  She told me the most Mom slept was about thirty minutes.  The doctor put Mom on a patch to help dry up her secretions so she would not choke.  Since she was on this patch, they did not put her on the medicine that helps her not go to the bathroom as much.  They were up a lot of the night going to the bathroom, sometimes every fifteen minutes.

Jennifer told me Mom is talking a lot in her sleep now.  Joan, Mom’s friend in her Sunday school class, had been trained with Hospice up North.  She gave Jennifer a book called, Final Gifts.  It spoke of things patients go through when they are near death. 

Jennifer told me Mom woke up during the night and with a blank stare looked at her.  She knew Mom was still asleep.  Mom talked in her sleep about the conversation she had with Angie.  One of the things she said in her sleep that disturbed me was, “Stop breathing.”  Since Mom does not share her feelings with us, I did not know if she had already given up. 

Her quality of life right now is not much.  She truly is suffering.  She even struggles to say a few words.  I called her last night to talk to her.  Dad answered the phone, and I talked with him for a few minutes.  He said he was resting for a little while.  I told him I knew it must be hard on him and he replied, “You have no idea, no idea.”  I told him I wanted to talk to Mom.  Mom got on the phone, and I told her I loved her and was praying for her.  She said a few words I could not understand.  I did not ask her what she said but commented I knew she could not talk very well.  She said she loved me and then we hung up the phone.  It was a very brief conversation, but I wanted to talk with her because tomorrow she would go into the hospital.  Dad had gotten in touch with the doctors at Mayo.  They decided to admit her to get a feeding tube at 7:00 a.m. the next day, which was March 2^nd, 2004.