Finding a Light in the Darkness: One Family’s Struggle with Dementia

demetia_storyThe Baptist Home
by Becky Barton

Like most children, we want the very best for our parents. We want them to live independently, able to live healthy, happy lives for as long as possible. But what happens when a parent is no longer able to care for themselves, and suddenly, the child finds themselves in the position of caregiver? What happens when it becomes a question of their safety for a parent to remain in their own home? I recently had the opportunity to sit down and visit with the daughter of one of our residents who was faced with these very questions just a few years ago. Here is her story.

Tell us a little about your mother’s background and when you began to notice her declining health.

My mom was born in Kentucky. Her dad was a farmer, and her mom was a nurse. She grew up working very hard. She went to college, met my dad and later married. He was a minister, so she was a minister’s wife for 40 plus years. That was her life.

When my dad passed away four years ago, my brother and I had to step in to help her. My dad had been paying all of the bills, so we came in and thought we could teach her how to manage the checkbook. We went grocery shopping, to Wal-mart and tried to help her pay the bills. It did not take long to figure out that she was just not able. She also was not capable of taking her medications properly.Because she could not remember what day it was, she was taking more medicine than she was supposed to and was running out sooner. We tried having someone to come to the home to help her with meals because she could not remember how to cook and was not eating very well. But then there was another complication. She started having hallucinations and began losing track of reality. She no longer wanted to let the lady hired to help her into the house. She became more afraid and eventually did not want to stay in her house. One day she said to me, “Can I just come stay the weekend with you?” And I said, “Well, sure Mom. You can come stay the weekend with me.”

She came and spent the weekend with us, and the weekend came and went. We were having a good time and everything was going pretty good, except she did not want to go home. It was during the next three weeks that we discovered she had a lot more problems than we realized. She was very disoriented. She did not know where she was, where to go the restroom, how to dress herself or even when to eat. She needed constant supervision.

Faced with the knowledge you would not be able to care for your mother at home, what did you do?

This was a very difficult spot we found ourselves in because I was working. My husband also needed to work. And so, we didn’t know what we were going to do. We discussed our options which included one of us giving up a career.

My pastor is Ron Mackey who also works for The Baptist Home. He helped me get in touch with Sherri Snider, administrator at The Baptist Home-Arcadia Valley, and found out she could do an assessment on my mom. The assessment would help us find out what her needs were and what they could possibly do to help us.

My husband, Dan, and I brought my mom to visit with Sherri in her office. She interviewed mom in a conversational way, asking questions to evaluate her memory and cognitive ability. “How many children did you have?” “Where did you grow up?” “What year is it?” “Who is the president?” “What did you have for lunch?” Just very basic questions, but she could not remember. Some days she could, some days she couldn’t. After mother’s assessment, Sherri felt that an assisted living arrangement would be the best placement for her.

Moving a parent out of their home into a long-term care facility can be very difficult. What steps did you take to make the transition as easy for your mother as possible?

We went back to her house and brought as many personal things as we could to make her room feel like home. When she moved to assisted living, she had two rooms and a bathroom. We brought in her pictures and her furniture and tried to make it home for her. Even when she stayed with us, she had difficulty recognizing what was her home and what was not. The transition in that way was a little difficult, but I think she recognized her things in the room. This helped her and helped me to feel more comfortable.

The first night I spent at The Home. There was a place downstairs with a very nice room where I could stay. The next day it was hard to leave her. It is so hard to have a parent come to a home. You know in your mind that this is what she needs, yet it is so hard emotionally. You feel like you’re doing something TO her, but you are really doing something FOR her.

Have you been pleased with the care your mother has been receiving at The Baptist Home?

My mom has been at The Home almost three years now. She has gone from assisted living to the medical wing where she gets the most care. Over the last three years, she has continued to decline with her dementia and needs more care, which she is getting. Even though it was really difficult in the beginning, especially the separation, it has gotten much easier. I have seen her relax. I have seen the relationships that she has developed with the people and their relationship with her. They all call her by name. They interact with her like she is a friend, not just a resident.

How has The Baptist Home been able to minister to both her and her mother’s needs?

Here, my mom gets spiritual help. She gets the nourishment she needs for her soul. She gets what she needs from other people loving her. And, she gets her physical needs met.This is just the best place for us, especially with my mom being a devout Christian all of her life. When she is unable to articulate a complete sentence, she can still sing all of the words to a hymn. At The Baptist Home, she has the opportunity to sing hymns frequently because they are constantly having church services and gospel groups in to sing. She sings along, and it brings her to life.

I remember one Sunday morning in particular. I had been struggling because my mom had been very sick, and it seemed as if her dementia was taking control. I wondered if this was all she had left or if this was a temporary thing. God let me know that He has her spirit, and she is still her on the inside. She is still His child. She is still able to love and to sing hymns and communicate in a way that her words don’t always say. At The Baptist Home, Validation Therapy has helped her, and me, to communicate and keep that part of her alive. If she is living forty years ago, and I happen to be her sister instead of her daughter, we do not correct her. We just go with it and allow her to be. It’s not a “you’re wrong” response which just shuts people down. She is allowed to be happy and alive, as much as she can be for as long as she can be.

What would you say to a family who has a parent or another loved one who is really struggling with guilt, anxiety or fear, not knowing what to do?

I would say that even though I was afraid to let go of my mom because I did not know if anybody could love her like I could love her, there are people who can love her or him, whoever they are. My mom has found family here. Yes, you can love her or him as a child, brother or sister, differently, but the people here can love them, too. I could have given my mom some help if I had given up my career and stayed home, but I really do not think that would have been the best thing for her. Here she is around other people that are similar to her and with people who know how to take care of her. I can come now and visit as her daughter, and we can have special mother-daughter time. If I was her caregiver, 24/7, that is hard…really hard. I know bringing my mom here was the best decision for us.

2017-10-03T22:31:35+00:00