Afterword (part IV)

Mom loved Jesus with all of her heart. Aunt Julie said our Christian legacy goes back a long way. Our family legacy won’t get us into Heaven. Each person has to make a personal decision to ask Jesus to be their personal Lord and Savior.

We are that house. Christ needs to be our foundation because the winds will blow and beat upon our house. Life is tough. Therefore, we need Jesus so that when the storms of life come, we will stand firm. 

 

U  How will you do things differently? Have you learn from my mistakes?  U

U  If you have a family member, friend, or loved one who is dying, can you tell them the wonderful things you want to say?  U

U  If you are terminally ill or dying, will you let your family members tell you everything they wish?  U

 

    “Anyone who listens to my teaching and obeys me is wise, like a person who builds a house on solid rock. Though the rain comes in torrents and the floodwaters rise and the winds beat against that house, it won’t collapse, because it is built on rock. But anyone who hears my teaching and ignores it is foolish, like a person who builds a house on sand. When the rains and floods come and the winds beat against that house, it will fall with a mighty crash” (Matthew 7:24, NLT).

 

“Let this be recorded for future generations, so that a people not yet born will praise the LORD” (Psalm 102:18, NLT).

Afterword (part III)

I wouldn’t trade anything in the world for the real hard times I described in the chapter “Friday Night.” As difficult as the night was, at least she was alive and still with me. 

Lean on God for your strength and ask Him to help you through and give you peace. Cherish the moments, as hard as they are, while your loved one is still here.

If you are reading this book because you have a loved one or friend who is terminally ill, I grieve for you. I got teary-eyed writing that sentence. What you are going through is hard, and I don’t have the answers; we have only trod the same path. The one person who does have all the answers is Jesus. 

Be comforted by the scriptures, "I can do all things through Christ who gives me strength” (Philippians 4:13, NLT). “The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged” (Deuteronomy 31:8, NIV).

Tonight, I feel like Mary, Jesus’ mother, because I may be experiencing the same feelings Mary had. Why did God choose me? I am an ordinary girl. Can I do what You want me to accomplish? How will I get it done? What will people think?

I am honored—honored is not a strong enough word to describe the feelings I have tonight. What an indescribable feeling I’ve never had before. I am in awe of how God would choose me to accomplish His excellent work.

Afterword (part II)

 

Jennifer mailed Mom a card a few days before she died. The card arrived after Mom passed away. In the card, Jennifer stated, “She was the best mom, and in her constant thoughts.” She was thankful for Mom and wanted to tell her again. 

She said Mom was an awesome example seen by others. Jennifer’s friend mentioned that our family has been an inspiration to her, with Mom leading the pack.

These thoughts were important for Jennifer to tell Mom.

The last time Jennifer called, Mom struggled to talk because she was dehydrated. It was awkward because Jennifer had to carry the conversation. She did not get to tell Mom all the things she wanted to. Jennifer stayed up with Mom most of the night—it was difficult to say the least.

Dad the caregiver

I asked Dad what special things he did for Mom while she was sick. These are the answers he gave:

Mom enjoyed going in her wheelchair to the Coast Guard Station at the beach and sitting on the end of the wooden ramp. She enjoyed watching the tide come in and out. Mom enjoyed eating breakfast in a restaurant at the pier—she would sneak biscuits out of the restaurant to feed the seagulls.

Mom liked to go to the grocery store because she enjoyed seeing her friends—it was a social gathering.

She enjoyed sitting on the back patio, watching the bird feeder, and listening to the chimes.

They drove near the base of one of the bridges and sat in the car at the pilot boat dock so she could look out. It is beautiful there. Pelicans and seagulls sit atop the old wooden pylons, where the sun sets behind them.

On one of the last trips to the Mayo Clinic, instead of taking I-95 home, they took A1A along the Coastal Highway. They also rode on the car ferry. They went to Fernandina and ate at Spanky’s Restaurant on the water's marsh side and sat on the deck for a long time.

She loved watching the squirrels eat the sunflower seeds he placed on the window seal by her bed.

    

Thank you, Dad, for all the sacrifices you made and for the care you provided for Mom.

  U What can you do for your loved one that they can no longer do?   U

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

While she sleeps

Putting Mom to bed was a feat in itself.  Dad would lay her down and adjust her body to the most comfortable position.  He would lift her arms and lay them on her body as she could not do so herself.  It was confusing at times when she would tell us to put her left arm on her right leg.  Usually we would be facing her, so it would be opposite of what we thought.  I would just giggle out loud and make light of the situation. 

When Mom would be sleeping at night, I would sneak into her room, lay hands on her, and ask God to heal her.  I did not want her to know I was in her room, so I would softly touch her as she slept.  This was something I was already doing, but I wanted to get the water from Aunt Julie and lay hands on her with the water.

U  Are you willing to accept it may not be God’s will to physically heal your loved one? U  

Seeds of doubt

 

There have been a few times I have had doubt.  Maybe I am imagining what I wanted to happen instead of what God was telling me.  One night as I was riding home from work, I was thinking about Mom, and a seed of doubt came into my mind.  I quickly dismissed it.  When I looked up, I saw a truck sitting at the red light in front of me.  On the tailgate, where one would usually see the word TOYOTA, the word JESUS was written out in white tape.  That one thing was all the words of affirmation I needed.

Mom’s grave

One of the things I wanted to accomplish through visiting Mom was trying to get her out of the house.  On previous visits, I would ask her if she wanted me to push her in her wheelchair down to the boardwalk on the beach.  She always refused.  I thought to myself that if I did not get her to go, she may never see the beach again.  To me her house became the grave.  She would end up never going out of the house, living a life trapped inside condemned to die.

One day Dad pushed the envelope as he too noticed the same thing.  He was trying to get her to go out to lunch with some girlfriends.  She got mad and told him if he had felt like he had thrown up all night, he wouldn’t want to get out of the house either.  We all notice the effects of the disease on the outside of her body but have not thought of what is happening on the inside.  She’s usually very drained and does not have much energy.

Mom has to use a speakerphone because both of her arms are paralyzed and just hang from her body.  When someone calls, we punch the button for her and put the phone on her lap so she can talk.  One day a lady called her to ask her out for lunch.  She said politely she did not feel up to it and thanked her.  After I hung the phone up, she began to cry a faint cry as the disease is taking over the muscles in her throat.  I asked her what was the matter, and she said she hated feeling like that all the time.  I hugged her and tried not to cry.  She did not want to talk about it in anyway.  I gave her some encouraging words that came to my mind.  It was not going to get any better.

U   Are you being sensitive to how the disease makes them feel on the inside?  U

Not like this

By this time, Mom had really already given up because she was not even taking the medicines that would help slow down the disease.  Jamie told me she quit taking the medicines before we knew.  I remember her not taking her medicines was an issue one day.  She did not want to take them, and Dad said something to her.  Dad, in trying to get her to take the medicines, mentioned the grandchildren and her being around to see them.  She commented, “Not like this.”  This was hard for us to take.  It was one of the first decisions she made about how she wanted to handle her terminal illness.

U      Are you accepting the loved one’s decision with how they want to handle the fate of their terminal illness and eventually their death?  U

Brenda

Mom cannot be alone at this point and needs someone to care for her at all times.  Brenda comes each morning to take care of her.  At first, my parents hired her to clean the house and help feed Mom.  Now, she is the primary caregiver in the mornings.  Mom told her she was not going to get any better.

In the afternoons, friends come over to visit with Mom until Jamie gets off from work.  Jamie then stays until Dad gets home.  Grandmother has helped out a lot and has been a blessing.  She lives across the street from Mom and comes over to help her in whatever way she can, even if it is to just sit with her.  Grandmother fell a long time ago and broke her leg, but her leg never healed right.  She has to walk with a cane or use a wheelchair at times.

 

If we cannot come down for the weekend, we would have to hire someone or Dad would have to be there 24/7.  Just getting her up to go to the restroom was a major task.  She has to wear a special belt around her waist to help us hoist her up without straining our backs.  It has two loops around it for us to grab.  After getting her up, we have to hold onto her as she struggles to put one foot in front of the other.  She has fallen several times before and luckily did not break any bones.

This particular weekend was my weekend to take care of Mom.  One Sunday morning on the way to church, I was walking Mom to the car and her feet stumbled under her.  She fell, but I caught her.  I lowered her down to her knees.  I learned from a previous mistake, that instead of panicking, I needed to remain calm.  She said, “You are not going to be able to get me up.”  I told her in a stern voice, “Yes, I am.”  I pulled her by the loops on her belt until she stood erect.  She was not hurt, and we continued on our journey to church.

    U  Who will be the caregiver for your loved one? (The caregiver needs to make sure they take care of themselves while being a caregiver.)   U

Praying for Mom to be healed

I had been praying for quite some time for Mom to be healed.  I felt as though I was all alone in this endeavor.  Through telephone conversations with my sisters, I found out they felt God was answering prayer by taking her life early so she would not have to suffer.