Suffering for a Little While

Shelley Renee Lewis Day McGregor

 

Shelley

 

After you have suffered a little while, our God,

who is full of kindness through Christ, will give you His eternal glory. He personally will come and pick you up and set you firmly in place, and make you stronger than ever.

To Him be all power over all things forever and ever.

1 Peter 5:10-11

This verse brought me comfort! 

It is from the NLT.

Shelley suffered with dementia for over ten years. This bright, smart, woman melted down to a non-functioning body and mind. 

At the end of our life, she looked around with wide eyes as if she saw heaven open up. Her eyes filled with wonder. Not fear. 

I wish she could have told me what she saw. But her eyes told the story. She was looking at her future home.

I have this picture on my dressing table. 

Tips for Caregivers

1. Find what brings you comfort and keep it near you. It mght be a Scripture, a picture, an article of clothing.

2. Read articles about sadness or depression. You will have these days. Expect them, and realize they are part of the process.

3. Find a person who will listen to you talk about your loved one. Not everyone wants to hear, and sometimes, we need to voice our memories. A willing person who listens is a godsend.

Show Up People!

 

All alone?

Humans are a weird bunch. Predictable? No, not us. We reason we will respond in a stable way to an unforeseen event. But then, an unexpected occasion occurs and boom! We surprise ourselves with unreliable actions. These fickle behaviors disappoint us as well as others.

In marriage, we vow to love and honor until death parts us, but the U.S. divorce rate stood at 40% to 50% in 2024. No one plans to split-up while kneeling at the altar. But life changes.

We don’t anticipate taking charge of a loved one with a long-term illness. But disease happens.

Circumstances convert to challenges. Paradigms breakdown.

When dementia overtakes a family member, a struggle begins.  Who will care for the declining one? Where are the funds needed? Should the deteriorating person go to a facility? If not, who will shoulder the responsibility for home care?  A few family members argue over what is best. Others remain mum and disappear from the scene.

Our daughter lived in three different facilities before God gathered her in His arms and carried her to Heaven. I witnessed multiple reactions from folks with precious family members in these places.

At the first accommodation, I noticed three people who seldom had visitors. One man never had any, but he spoke by phone to relatives. I spotted two residents whose family members came daily.

About twenty occupants received sporadic guests.

One sweet lady never had anyone darken her door. When she died, the director of the place called the lady’s son multiple times, but he didn’t answer. Three months later, the son called to ask about his mother. The director informed him she had been buried at the county’s expense. He responded, “Thank you.” And hung up.

Did he predict he would act that way? Who knows?

I heard a man say, “I just can’t see my dad the way he is now. I want to remember him as a vibrant, healthy person.” Excuse? Perhaps, on the other hand, maybe the guy remained too weak emotionally to handle a tough situation.

I’m a member of support groups. One guy wrote something like this. “I’m 80 and I take care of my wife who declines with dementia. I also have health issues. Our two daughters live fifteen minutes from us, but they refuse to come over. I asked them to call us each night and every morning to make sure we are alive and well. They both said to text them instead.”

The man is deeply hurt by his daughter’s obtuse behavior. They refused his request for help.

A lady wrote, “I take care of my mom in my home. My sister doesn’t come to help, but she calls me to tell me how to do something.”

I met a lot of caregivers during the ten years we took care of our daughter. They struggled with fatigue, loneliness, and financial ruin. When I asked about contributors, most shook their heads. They were in it for the long haul…all alone.

As I sat with Shelley one day, I watched a man across the hall with his wife. He stayed alone with her as she lay dying. He made sure staff turned frail body every fifteen minutes.

However, I saw generosity in others. One lady’s son brought donuts each day for the entire facility.

A wife, whose hubby lived in the second facility, regularly had family members come with her. A wife’s daughter helped her figure out how to pay her husband’s rent each month.

I saw a son give his mom a big kiss. As she left the salon, her son came around and gave her a big smile. “Mom, your hair looks beautiful.” He gave her a kiss and handed the beautician her fee.

I have friends whose entire extended family join together and plan their mom’s care.

As I write this, my hope is that these true stories will inspire us to keep showing up for the treasured one. I hope the absentees will appear. Their relative may not know them, but the primary caregiver will appreciate the visit.

Tips for Caregivers

1.     Don’t agonize over the help you deserve but don’t receive.

2.     When a friend or family member asks what you need, tell them. Don’t hesitate. Be truthful.

3.     Make sure someone checks on you. Arrange a system. I know a lady with three kids. She lives alone. One calls her early in the morning, one at noon, and one at bedtime. She’s blessed to have them. Another woman lives alone but enjoys the newspaper. She told her neighbor, “If you see my paper at the door, please check on me.” She loved reading it with morning coffee, so if it appeared untouched, something was wrong. If you are the sole caregiver of a person, others need to make sure you’re okay. What if you died and your loved one was left alone?

4.     Plan for the future. A will. A funeral home. Power of Attorney. A DNR.

 God bless all who read this.

Regrets

 

So, even though Shelley isn’t here, I continue to write this blog and offer suggestions. I hope my offerings benefit caregivers. Assisting caregivers helps me with my grief. I understand the heartbreak of watching a loved one vanish while they live. Dementia is a diabolic disease.

I experience regrets, but I know I did the best I could.

We drove past her memory care facility yesterday and I said, “Shelley isn’t there. She’s in a better place.” Paul agreed. I looked up through the car’s windshield and into the cloudy heavens. I said, “Hi, Shelley, I know you are healthy and having a wonderful time up there.”

We drove on, but I wanted to stop at the facility. I longed to walk to her room and see her. Just one more time. But back then, a monstrous illness occupied her frail body.  At the end of her life, she lay in bed, sick unto death, and seeing her in that condition gave me immeasurable agony. She couldn't move. Her breaths transformed into laborious, shallow and infrequent ones. She slept. I don’t wish for another second like those. But still, I yearn for a few extra moments with a healthy Shelley.

 On the day God lifted her out of her misery, she couldn’t open her eyes, but she blinked as I spoke to her. I told her we loved her and that God did too. I wish I had stayed longer with her on the day God came for her, but we can’t walk into the unknown with the dying. We can only say goodbye. And I did that earlier. I knew God was coming, but I didn’t know when, but I regret I didn't stay.

Growing up, Shelley often acted strong-willed. As a child and teen, her choices stressed us. Even as a kid, she acted spontaneously and never thought of the consequences. However, she also exhibited a sweet, generous, engaging personality. She never meant to cause us emotional turmoil. She didn't seem to know the difference.

On her arrival, due to low birth weight, she spent 10 days in an incubator. The hospital officials wouldn’t let me see her. In retrospect, I should have insisted on tending to her, but as a teenager, I didn’t have the confidence to demand my rights.

I regret I  didn't hold her, feed her, and sing to her during those days. She would have known me.  Science now recognizes how much the mom’s presence is essential to the baby’s physical and emotional growth. When the mom is absent, emotional growth suffers.

I’ve often wondered if losing the connection with me caused something to click in her brain. Perhaps this disconnect caused some sort of defect that later led to her inability to recognize behavior causes consequences.

Did abandonment after birth lead to Shelley’s Alzheimer’s? Probably not, but on the other hand, scientists keep discovering new knowledge. At least, it is new to them. God planted solutions here, we just need to find them.

When I delivered this precious, tiny four-pound baby, nurses didn’t think she’d survive. I kept saying, “I don’t hear her crying.”

The doctor replied, “We are working on her.”

After what seemed like an eternity, I heard a feeble weep coming from across the room. She sounded like a newborn kitten. She produced no lusty yell, but her weak utterance sounded beautiful to me.

The nurses whisked her off to an incubator at faster speeds than a Daytona race car driver utilizes. They placed her in the artificial womb, and she struggled alone, determined to live. She had grown accustomed to my voice, and then, boom! She didn’t hear me speak again for ten days. She must have felt like I had abandoned her.

Hospitals now know the importance of the bonding between babies and parents, and immediately after birth, the nurses place the baby in the mom’s arms. Babies know their mom by the sound of their voice, and their mom can soothe them instantly. During the days when Shelley was born, the doctors thought birth should be sterile.

And of course, hospitals should be. Sanitization is important. So is common sense.

Suggestions for Caregivers

1.      Regrets will come. Realize your limitations and humanity. Forgive yourself. Don’t be so hard on yourself.

2.      Spend as much time as you can with your loved one. If they leave this Earth when you aren’t there, it’s okay. You will follow them one day, but you can’t accompany them on their final journey.

3.      Remember this! Everyone grieves differently. Do what is right for you. If you need to cry alone. Do it. If you need to talk, find someone who listens. If You need to be angry with God, it’s okay. God can handle it. You can shout at Him if you want to. Jesus empathizes with us. Jesus cried when Lazarus died. He didn’t cry because of the death, Jesus sobbed because he cared about the relatives and friends who were hurting. Jesus currently sits at the right hand of God, His Father, and Jesus tells the Father how we feel. Of course, God knows this already, but Jesus has first-hand knowledge.

4.      Knowing the Holy Trinity understands may help you. It may not.

5.      Acceptance takes time. And the amount of time varies per person.

6.      Why does God allow this bad stuff? I don’t know why He allows good stuff.

7.      You will get through these days. Believe it.

8.      If you need financial help, pray for it to come your way. God likes for you to ask Him so He can surprise you.