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?

 

Grandmother (part II)

Dad called Wednesday and said she was not going to last much longer. 

“Do you want to say something to her? I will hold the phone to her ear. She will probably not hear you.” 

“I still want to talk to her anyway.”

“Thank you for being a wonderful . . . grandmother and a special person. Ashton, Lauren, and Paul think the same thing. You need Jesus because He is the most important person—you need to ask Him into her heart,” I said as my words turned to crying.

These are the last words I would say to her.

Paul hadn’t seen his grandparents much because they lived far away. Two of his grandparents died when he was in high school or college, and three died before he was born. Fortunately, he had mine. 

I received a text from Joann on January 5, 2012. She wrote, “Grandmother is finally at peace and no longer in pain. She passed away at 2:40 p.m. The memorial service will be on Saturday at 2:00 p.m. at her church on St. Simons. Her service will be at the cemetery in Savannah in the upcoming weeks when it is convenient for our cousins and us.”

There will not an open casket because Grandmother was cremated—she didn’t want people to see her that way.

I called Dad to see if he wanted us to stay at a hotel. Things would be hectic around his house, and I did not want to make it worse.

“I want your family to stay here.”

He was talkative, which surprised me a little, and he was excited to see everyone. He might have felt relieved after managing Grandmother’s finances and many other things for years. 

Grandmother (part I)

 

Dad sent me an email saying that they referred Grandmother to hospice, and a hospice nurse will assess her in two days. The next day, Dad sent another brief email with the subject line “Mother.” I hesitated before opening it because I feared it might be bad news. 

His short email stated, “She is sinking fast!! Horrible sight. Dad.”

I called Dad to check on Grandmother.

“Grandmother had a bad day yesterday—she is restless. I’ve not seen her eyes open all the way in three days.”

“I’m sorry, Dad.”

“She’s not able to swallow, so they gave her meds under her tongue and made her comfortable. Jamie visited Grandmother, and Grandmother opened her eyes briefly but did not know Jamie was there.” 

“I want to see her.”

“I don’t think she will recognize you or know you’re here. I think you should remember her the way you saw her last.” 

    Grandmother is not ready to die because I still don’t think she knows Jesus. She wouldn’t let me have conversations about salvation. 

“That is personal information,” she would tell me.

Before I went to bed, I cried and prayed, “Lord, I want her to meet you so bad because I don’t want her to go to Hell.” 

    She is a wonderful grandmother. I prayed for her salvation for years asking that Jesus would call her to Him. I wish I could do something for her, but I can’t. She must recognize her need for Him and invite Him into her life. I prayed she would be awake enough to do so. I did not know what to pray for—the Holy Spirit would do that for me. 

“Baby doll”

I guess I did not know what really to expect.  The men from the funeral home came to the door.  It was real assuring because one of the men knew Mom and went to her church.  He walked into the room where she lay and sat down beside her.  He called her some cute name like “baby doll.”  I did not want to be in the room nor see her as she was being taken away.  They asked Jamie and me verbally if she was to be embalmed; we said yes.  He asked if Mom had any undergarments.  We packed her things and gave them to him.  I saw her on the folded up bed.  They had a sheet covering up her body to her chest.  They brought by a guestbook, a stand to put it on, and a chest full of ice.

The next few hours were a whirlwind.  Countless people came by and visited, several brought food.  That night was difficult.  I slept in the same bed I had the night before, in the room where she passed away.  She did not want to die at home because she did not want us to remember her house as where she passed away.  Mom wanted to pass away at the Hospice facility in Brunswick.  The facility did not have any open beds though.  As I slept, I woke up a few times during the night and looked up to the bed where she had slept.  All that was there was a stuffed bunny she loved.  It had a Valentine’s balloon tied to it.

U  Where does your loved one want to be when they pass away?  (It doesn’t bother me that she died at home.)  U

U  If you live out of town and are unable to send a meal, have you thought about sending the family a gift certificate to their favorite restaurant?  U 

Home alone

There was a fair in town, and Dad had mentioned something about taking the kids.  Jamie said Dad wanted to get out in the garden.  He said he would take them to the fair, and he wanted to work in the garden when he got home.  After Dad left, Mom and I were home alone.  I found Charles Stanley preaching a sermon on TV and left the channel there.  He was preaching on God’s will.

 

A friend of mine I went to high school with called.  We talked for a long while.  I did not talk quietly because I thought Mom was deeply asleep. 

 

As I was watching TV, I heard a gurgling noise come from Mom and directed my attention towards her.  Mom had been breathing through her mouth recently, and each time she took a breath, her tongue would move forward and back with each breath.  I then noticed the number of times her tongue moved decreased greatly.  I knew she was taking her final breaths.  I had just spoken to Dad since I had been home about Mom and her decision not to be resuscitated.  Dad also told me if Mom stopped breathing, not to call 911, to call the Hospice number.

U  Has the caregiver been given instructions on what to do or who to call if the loved one stops breathing or has a heart attack etc.?  U 

“Breathe for me”

We stayed up late this night because Angie was going to come by.  It was after 9:00 p.m. before she got there.  Mom had been resting on the couch for a couple of hours.  She had already decided to get a catheter, so that was the first thing we addressed when Angie got there.  We got her settled and in bed for the night.  Meanwhile, Jackie called and asked how Mom was doing.  I filled her in on all the details, and I told her I would ask Angie how long she thought she had left to live.  When I asked Angie, she of course did not have a definite answer.  The answer I remember receiving was a few weeks to a couple of months.  Jackie wanted to know because she was getting ready to go out of town. 

That night, Dad and I decided to give Mom some Morphine so she could rest better.  This night is very foggy so I can’t remember all the details.  I remember calling Angie at 2:00 a.m. asking about the Morphine.  She told me I could call her anytime, that this was part of her job.  She even told me she would come over for a couple of hours to watch Mom when she was struggling to breathe so she could better assess her.  She told me to call back four hours later regardless of how she was doing.  I set my alarm and called her back at 6:00 a.m.  The Morphine helped a lot and she only woke up a few times during the night.

U  Are you asking your health care provider for current assessments of your loved one to make sure they are not suffering and to make the best decisions for them if they can no longer make them for themselves?  U

U  Can you ask the doctors, nurses, hospital staff to be honest with you if they know the loved one is about to die? (A lady told me a friend was in the hospital, and the doctors knew the man was going to die because of his injuries, but they never told his wife.  She was very angry at the doctors because there were so many things she would have said to him.)  U

I told Mom to say “Judy” when she needed me so I knew she was talking to me.  Several times she did so with a loud enough voice to wake me up.  Sometimes, I would just wake up on my own and look up to check on her; she would also talk in her sleep and wake me up.  I would pop my head up and look at her waiting to see if she would say anything.  Usually she did not say anything, so I knew she was talking in her sleep.  I think one time she called my name, and I waited to see if she would say anything else and she did not.

There was one time Mom woke me up and said a comment to me that I will always remember for the rest of my life.  She was struggling to breathe and said, “Breathe for me.”  I said, “Mom I can’t do that.”  I remember several times asking Mom what I could do to make it better.  She always had something for me to try.  A couple of times she answered, “I don’t know.”

MOM!! MOM!!

 

Just a few hours earlier, I had placed Dad’s cell phone number and the Hospice number on the closet door.  I quickly called Dad’s cell phone and in a panic state told him Mom almost stopped breathing.  He told me to call the Hospice number.  I shook Mom and said out loud, “Breathe!!”  I then called the Hospice number, and they said they would page Angie.  Angie called back, and I told her what happened.  I asked her if I should use the BIPAP machine, and she said I could if I wanted to.  I did not know much about the BIPAP machine and did not want to bring Mom back to life if that were not her wishes.  She said she would be there in a few minutes.  I then called Dad back and asked him whether or not he wanted me to use the BIPAP machine and he said I could try. 

As I was right in the middle of helping Mom, Nana called.   I asked her if I could call her right back.  I did not know that the BIPAP machine assists the patient; it will not breathe for them.  I remember calling out very loudly, “Mom!!.....Mom!!”

U  Has the primary caregiver educated friends and family concerning the exact functions of equipment and administering medications if they will be left alone to care for the loved one?  U

U  Are the instructions and phone numbers discretely posted in the room?  U

I don’t want to know anymore (part II)

Mom is not eating or drinking orally for now.  Again, Mom had to sacrifice something.  This time the joy of being able to taste food especially her favorite foods.  Imagine craving a pizza, a milkshake, or seafood, and now you can’t ever satisfy that craving again.  Mom loved a cup of Coke without ice.  The doctor said she can eat or drink as much as she could tolerate.  Joann said before the surgery her eyes were sunken, and she did not have any color.  She said she looks much better now, and if Mom did not have the surgery she may have already died.  The surgery has bought her some time.

U   Are you being sensitive concerning not eating or drinking around your loved one if they can no longer eat or drink?  U

Dad is still figuring out what to do with Mom’s care.  Joann said if Dad sends her to a Hospice facility, he might as well go ahead and drive in the nail because she will give up.  She said Mom loves for Dad to take care of her.  This is funny because she did not want him to at first or at least she did not want him to stay home from work. 

Joann told me the small details like: Mom liking to suck on the corner of a wet rag; that she could not control her head any more, and restroom issues.  One of the funniest things Joann told me was Mom said she has an emergency.  The emergency was Mom wanted her head to be scratched.  I just think that is so cute.  She said Mom still has her spunk.  She told me Mom was concerned about Joann leaving her purse here and there while at the hospital.  Joann said her purse was attached to the wheelchair, and if someone wanted to take it then they would get a whirl.  It is funny Mom, in her weak state, would think of Joann and use such effort to speak with her weak voice.

Joann said she did not know if I would be able to handle Mom by myself.  I have two bulging discs and arthritis in my neck.  She seems to think I will mess up my back, which makes me even more determined I can do it.

U  Are there small details you can pass on about assisting your loved one?  U

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.

A blanket of snow

The following day, a beautiful blanket of snow fell to the ground.  Lauren and Ashton were looking forward to a snow day and having a snowball fight.  We spent the morning making snowmen and playing in the snow.  I called Mom to let them tell her we had snow.  No one answered.  A few, very rough days would start today.

Jennifer called me on the phone and asked me if I had read Dad’s e-mail.  I had not.  Dad wrote this e-mail on January 16, 2004.  Also in the e-mail it talked about Mom needing a wheelchair soon.  It read, “Girls, Elaine is getting worse every day.  She is choking, real bad, on her drainage, it’s real scary.  I talked with a doctor from Mayo tonight.  He is recommending a tracheostomy (trach) at the same time as they put in the feeding tube, and the BIPAP machine.  They will probably do it late next week, if they can get a bed at the hospital.  We will see a local heart doctor tomorrow at 8:15 a.m.  I will discuss all this with her.  I’ll try to send another message tomorrow night.  There is a lot going on.  I’ll try to keep you posted.  Love, Dad.”

Dad had called Mom’s doctor and the doctor’s recommendation was not to get a trach or feeding tube but to go through Hospice.  Here are a few important terms:

*A tracheostomy (trach) is an artificial airway that is surgically placed in the lower neck area to ease breathing and clear secretions. 

*A feeding tube is a temporary or permanent tube surgically placed through the abdomen usually through the stomach to provide nutrition. 

*The BIPAP machine is used to aide breathing in order to help the patient get a bigger volume of air in their lungs. 

*The Hospice Foundation of America helps patients and their families that are going through a life-limiting illness.

Mom had a decision to make.  Live a while, maybe a couple of years on a feeding tube and a machine to help her breathe, or to do nothing and live a much shorter life.

U   Have you sought out resources available to you such as Hospice? (A doctor’s referral is necessary to enter Hospice care but can be initiated by anyone.   Most Hospices accept patients with six months left to live or less.)  U

Tonight’s devotion was a doozie!  The title was “Recognizing God’s Presence.”  It spoke of how we focus on miraculous events instead of looking at God’s presence and Jesus Himself.  It even spoke of a wheel-chair-bound person getting up to walk again.

The scripture was Mark 8:11-13.  “When the local Jewish leaders learned of his arrival they came to argue with him.  ‘Do a miracle for us,’ they said.  ‘Make something happen in the sky.  Then we will believe in you.’  “He sighed deeply when he heard this and he said, ‘Certainly not.  How many more miracles do you people need?’  “So he got back into the boat and left them, and crossed to the other side of the lake.”

The prayer at the bottom of the page was very relevant, “Dear Lord, forgive me when I demand evidence of your working and power instead of thanking you for all you do.  Please open my eyes to be aware of your presence, to sense your nearness, and to see the works of your hand everywhere I look.  With all my heart I welcome your presence today, however you choose to reveal yourself to me.  And don’t let me forget to thank you.”

 Fuller, Cheri. The One Year Book of Praying through the Bible. Wheaton:        Tyndale House Publishers, Inc., 2003. February 26.