Spring 2025 - Vol. 22, Issue 2

He didn’t think he could talk to anyone about what he was feeling and didn’t want to ask anyone to listen. It was hard to understand. He would look to God. Even then, he had questions that went unanswered. He would be sharing her words because it was what she wanted. She wanted to make light of what was happening to her – she had seen it before. He didn’t think he could do it.

For three years Alan took care of Dorothy. Helping her wasn’t going to be easy, but giving back to her would have lasting rewards. She asked for a favor. It stemmed from a promise he’d made to her during one of their ‘talks’ years ago. His mama was the only person he believed really knew him. He could share anything with her, without judgement, without argument. And he knew he would do his best to give her whatever he could. Alan was her baby, after all.

She told him she would plan her own funeral, write her own eulogy. But she needed him to do this for her before she died. Dorothy asked him to keep a journal of what she had to say. Anything that came with her dementia. She felt it coming. She remembered Alan’s father’s dementia well. He’d talk about people and places in his past. She learned things about him that he’d not told her in 54 years of marriage. Elvin’s behavior worsened to include sadness and rage. Dorothy researched what to expect. Dementia not only affects thinking and memory. It can cause confusion that leads to frustration and anger. At times, luckily, without knowing it, Elvin would be childlike and tell very funny stories. She couldn’t help but giggle to herself. But when he heard her, he didn’t think it was funny. He would become agitated.

As her own dementia began to affect her memory and emotions, she asked Alan to start writing down her thoughts and stories. When she was gone, she asked him to share them with the world. Then others who had a loved one with the condition would know what they can expect. Alan reluctantly agreed.

With mama, there was always one more thing. This time she had one more promise. When her time came, she wanted to die in her own bed, with him sitting next to her holding her hand, so she could feel the touch all the way to heaven. He joked with her that his arm wasn’t that long, but she was serious.

That very day he made the promise. What he promised is what Alan would give her. It wasn’t long after that Dorothy became homebound when a virus nearly took her life. She loved to describe herself as a tough farm girl, and she proved she was.  After she’d survived that virus, a broken shoulder, Covid 19, a broken hip, and episodes of anxiety, she told Alan her time was near. Yes, Dorothy was tough! But they both knew no matter how tough she was, she was right. The dementia was beginning to cause confusion, loss of words, a change in personality, and agitation. Although she was in the mild stage now, Dorothy was aware how quickly it would progress to becoming severe.

Alan had become her full-time caregiver. He had some who came in and helped him if he needed to shop or check on his wife. But even when he was away, he was watching the camera in her room on his phone to be sure she was comfortable.

He saw it begin. Dorothy knew too. She urged him to start her journal. Writing Dorothy’s words made Alan smile, and giggle. And also made him sympathetic to her declining cognitive ability. But more often than not, he would find himself weeping as he wrote them down. D to represent Dorothy and A to represent Alan.

D: “Where’s the man that feeds me?”
A: “Mama, that’s me.”
D: “No, not you. I want to see that man who feeds me.”

D: “I’m hungry.”
A: “Lunch was fifteen minutes ago.”
D: “No, it couldn’t be. I feel my tummy is hungry. Why are you lying to me?”
A: “Ok then. You’re hungry. Let’s eat!”

D: “Where’s my Mama? I want to talk to my mama.”
A: “Remember she can’t talk to you. She went to heaven.”
D: “Don’t say that! Please can I talk to Mama? I really want to!” (she cries)

D: “You should be at school young man!”

A: “I haven’t gone to school for years, Mama.”

D: “Son. You are going to be in big trouble with your dad!”

D: “Hold my hand.”

A: “Of course, Mama. Whatever you’d like, but you’re not dying yet.”

Alan giggles, but then he sees the seriousness in her face.

D: “I know. I just want you to.”

A: “I won’t be able to finish folding the laundry.”

D: “I need you to. If I feel you there holding my hand, I know I am still here”

D: “Am I old?”
A: “You’re only as old as you feel.”

D: “Nonsense!”

A: “I don’t think you’re old.”
D: “I must be old, you certainly are.”

D: “Why won’t you take me home? I want to go!”
A: “You are home. This is your home. You’re here with me and safe.”
D: “You don’t understand what I’m saying. Take me home now!”

A: “Don’t get upset. Maybe after dinner.” Alan puts down her food tray.

A: “Sit up, Mama. Maybe you should do some sit-ups, get a little exercise before you eat this fattening chocolate pudding,” he laughs.

Dorothy starts waving her arms in the air like a conductor.

D: “I’m sitting up. How’s this for exercise??” She breaks into laughter too.

A: “Mama, see the hummingbirds outside?”
Without looking she points toward the TV.

A: “Outside. Can you see them?”
D: “Why don’t you ask them? They will know. They can see them.”

She’s pointing at the TV. Andy Griffith is on.

A: “Andy is on TV. He can’t see them. Look, you love hummingbirds.”

D: “No, I don’t! I love him!” She points at Andy.

A: “Why are you crying?”
D: “I’m ready. Why doesn’t he take me?” Pointing upward.
A: “He must have more for you to do.”
D: “I don’t want to do anything else. I want to go be with Jesus.”

A: “Soon enough, Mama, soon enough.”

After these type of comments, which Dorothy made often, she would become depressed. It was all Alan could do to get her to eat or talk. She only wanted to sleep and would wake up upset and confused. She’d try to get out of bed, only to realize she was too weak to walk on her own. She’d shout and swear (something she rarely had ever done). These episodes went on for several days at a time. Alan learned he had to try to stay upbeat and do things to try to make her happy.

Alan wanted to surprise Dorothy, so he brought over her 6-year-old great grandson to visit. Jason was gentle and sweet with her. He told her secrets, asked her questions, showed her pictures on his tablet, and took a picture of them together telling her he would keep it forever. Jason recorded a conversation they had where he asked her questions, and she gave him silly answers. He was there all afternoon.

After he left as his daddy drove him home, he told him he was going to take care of his Mama when she was old, just like Papaw does.

When Dorothy realized he was gone, she swung her legs around and started to get out of bed, when Alan stopped her.

D: “Where did that boy go?”
A: “His daddy picked him up.”
D: “I wanted him to stay. (smiling) He is a good boy. He loves me.”

A: “We will bring him back.”

D: “But what if I’m gone? I may never see him again.” (she cries)

D: “I want to get away from here! I want a sandwich from the diner.”
A: “Mama, you need to stay here. I will make you a sandwich. What kind would you like?”
D: “What if I have Dad drive me? We can visit Etta May.”

Etta May had been her best friend since childhood and passed two years ago & Alan’s dad died five years ago.

A: “You know dad and Etta May are both in heaven, waiting on you.”

D: “Then I need to get dressed. I can still get a sandwich from the diner on my way.”

She began to become more disoriented and would hallucinate.

D: “I’m getting up. I’m walking right out of here.”
A: “Where do you want to go?”
D: “I’m going to get my car. I want to drive.”

A: “You aren’t able to drive. We’ve talked about this.”

D: “Go get your dad. He’ll drive me.”
A: “Remember Dad is gone.”
D: (Long pause) “But I just saw him.” (she cries)

D: “Why won’t you give me my purse? No one will give me my purse!”
A: “I’ll get your purse. Why do you want it?”
D: “I have to get stuff out.”

A: ‘Maybe I can help you. What stuff?”

D: “It’s my stuff! You can’t help.”

Alan brings her purse, which is empty except for a pack of Kleenex. She proceeds to begin to take the Kleenex out one sheet at a time, fold them, and set them aside.

A: “Mama, what are you doing? You don’t need all of those.” He begins to pick up the folded Kleenex. She puts her hands in fists and begins swinging at him.

D: “Leave my stuff alone!”  And Alan let her continue.

D: “Where’s my car?”
A: “Remember, we sold your car.”
D: “I want it back! I’m going to get it. I have somewhere to go.”

A: “Where?” She shrugs.

D: “It’s not your business. But if you must know I have to go to Blair Ridge to see your dad today.”

A: “Dad isn’t at Blair Ridge, Mama.”

She looks confused trying to remember.

D: “That’s right. He’s left us.” She begins to weep.

Alan brought his wife to visit. He asks both of them if they want ice cream. Dorothy says yes, his wife declines. He brings back a bowl for Dorothy.

D: “Why didn’t you get her ice cream?”
Wife: “I didn’t want any.”

Alan leaves the room. Dorothy motions his wife closer and whispers.

D: “I don’t know why he didn’t get you any. Would you like me to get it?”

While there is both humor and sadness in these, Dorothy would have occasional moments when she was lucid. When she was lucid, she would remember the journal, and she would ask Alan to read what he had written so far. Sometimes it made her laugh, others it made her cry.

Alan’s wife suffered from Multiple Sclerosis. One time when she was visiting Dorothy during one of her lucid times, Dorothy asked her to tell her about how she was feeling. As she began to explain some of her symptoms, Dorothy slipped back in her mind. She became confused and angry. She turned it around as if Alan’s wife was talking about her.

D: “You don’t know how I feel! You need to shut up!”

A: “Mama, she was telling you about her disease. She wasn’t talking about you. You’ve hurt her feelings.”

Dorothy put her head in her hands. When she lifted it, it was as if she’d realized what she’d done.

D: “I’m sorry. I’m so, so sorry,” she said weeping and reached out and hugged her.

It was always heartwarming when Alan turned on hymns on the radio for her or turned on the church service on TV. She would listen and repeat ‘Amen.’ She sang along and knew all the words to the hymns even though when she spoke, she struggled to find words.

Dementia may not be classified as a disease, but it affects three million people annually and is more common in women. It generally begins after the age of sixty. Many never get past the mild stage, but as most of us age, it has the tendency to progress. Alan had researched it for any kind of cure. There was none.

Dorothy’s dementia journey began when she was 84. She lived to be 87 and was a woman of great faith. Alan often wondered himself why God hadn’t taken her sooner when it all began. Why did she have to live through the last three years in this mental anguish? But we don’t get to know, only God does. Soon she would too. Maybe he kept her there just for Alan. All he knew was that he was keeping his promise.

When his mama passed, Alan was right there beside her holding her hand. He was the last person she saw, and she felt his touch. He was overwhelmed with love for what he’d done. The depth of the promise he’d made was fulfilled. And now he shares her words from the journal as she wanted. And he gave me permission to share them too. I miss Dorothy. Her life lives on every day through her son, my husband, Alan.