Grace uncommon, part 15

We did everything that we could, but there came a time when we could no longer care for Aunt Grace.

For several months, we were able to provide around the clock care for Aunt Grace. Then one weekend we couldn’t find a caregiver. My dad and I weren’t able to take care of Grace that weekend. It might have been a wedding in the family, I don’t remember. It was another obligation that required a weekend away. The other two caregivers were not available either. My parents had no choice but to have Grace stay the weekend in a nursing home for respite care.

It was a Monday morning when my dad and I waited outside of her house for her return. The van driver got lost on Grace’s return ride home. He couldn’t find her home address on the map for anything. One of the difficulties of living in a very small town before good navigation.

We weren’t quite prepared for the condition that she was returning in. We almost told the driver to take her back when he left. They returned her in a wheelchair unable to walk. She could no longer hold her head up. Her head was tilted to one side. She could no longer speak right. Her words came out in a slurred moan. She couldn’t chew food. She choked on water. 

My parents took Grace back to the doctor. He said that she was starting to have small strokes. We could no longer provide the care that she needed at home. We did the best that we could.

 

Grace uncommon, part 12

I remember it being a very difficult weekend. It probably would have been in the top ten worst weekends of my adult life. But who wants to keep track of such things.

I don’t think that I could adequately describe how it feels to take care of a loved one that is suffering and dying from dementia. It was different from being a caregiver for my autistic brother, Matt. Sure, they both had good days and bad days. With Grace it was a gradual decline. Most days I didn’t recognize her anymore than she recognized me. I grieved for her while she will still living because she was already gone.

I was exhausted to the point of where I thought I could no longer hold on to the loose strings of my sanity. I hadn’t slept. Dealing with sleep deprivation was never a strong suit of mine. My patience was running thin. I was worn down.

It was one of those weekends that Aunt Grace was up every hour during the night. I “slept” on the couch right outside of her bedroom. Just when I was almost back to sleep, she would be up again. The kids would be up in a few hours and I hadn’t slept yet. I was having a hard time.

As I was walking with Grace to the bathroom, she looked right at me and asked me my name. I replied, “My name is Alissa.” Aunt Grace looked at me and responded, “I once knew a girl by the name of Alissa. She was a very kind and caring girl. I think that if you met her, you would really like her.” She was talking about me without knowing who I was.

I think at that very moment, God was looking down upon me with mercy. He gave me a glimmer of light to help guide me down a dark road. It was such a meaningful blessing to me that it motivated me to finish the race strong. It was exactly what I needed to get through.

I will never forget that moment.

Grace uncommon, part 11

And then one day it happened. Grace did what she always told us not to do.

Aunt Grace told everyone not to get old.

My parents took Grace to the doctor for a check up. She failed the dementia test. Soon after that, she was no longer able to take care of herself. My dad, despite all of his shortcomings as a father, was great with his elders. He became Grace’s primary caregiver. He stayed with Grace every night, except on weekends. My autistic brother Matt still lived at home and my mom worked full-time. At the time, I was staying home with my three kids that were between the ages of 4 and 9. I became the day time and weekend caregiver. One other caregiver worked day time hours and another did weekends. 

Aunt Grace needed 24 hour care. The evenings were especially grueling since Grace would wake up at the minimum of three times a night to go to the bathroom. Some nights she was up every hour all night. She would scream until someone came and got her up. Over time, we tried sleeping pills at night. She would still wake up agitated and try to get up but be very uncoordinated. Sleeping pills were not a good option. 

So the weekends I spent there, I was up all night with Grace getting at best a few hours of uninterrupted sleep. Then my kids would wake up early. I was so exhausted. I had to be within two rooms away from Grace at all times because she would try to get up from her bed or rocking chair by herself and fall without assistance.

It was difficult to do with the kids because although Aunt Grace could not see well she had great hearing. If the kids made any noise at all, she would call them over so that she could flail her arms at them. She would yell at them and try to hit them. I often told the kids to leave her alone and set up a play room for them at the opposite end of the house. I find it sad that they remember her as a crabby old lady, not knowing the wonderful person she was before the dementia took over her person.

We spent a lot of time together. While we sat with Grace I helped my oldest daughter with her multiplication facts. Aunt Grace was a math wiz. She always jumped in with the answers before Angel could. But she didn’t remember our names. She didn’t know who we were. I spent a lot of time scrapbooking nearby. It was a time in my life where I was forced to sit in silence and reflect a lot.

By the time I became Aunt Grace’s caregiver, I had a lot of experience. Not only did I have 3 kids of my own, I  provided care for my autistic brother. I worked my way through college as a caregiver for an older gentleman with paranoid schizophrenia and an elderly woman with dementia. So it really didn’t bother me that I also had to bathe Aunt Grace. After awhile when she could no longer stand in the shower, I helped give her sponge baths. She was pretty angry with me for bathing her since she was always cold. Even on the warmest summer days, she needed her electric blanket turned on high. 

Our goal was to keep her at home as long as we could. It wasn’t easy because she was no longer the Grace that we remembered. In retrospect, even though it seemed like a long time while we were going through it, it really didn’t last that long. Plus it felt good to know that we did everything that we could to be there for her in her darkest hours even if she might not have realized it. 

Grace uncommon, part 3

I remember when she first started to slip.

I took the kids over to visit Aunt Grace. They made a picture frame for her out of popsicle sticks. They glued candy hearts on the frame and put a cute picture inside.

The next time that we went to visit, the picture of the kids was gone. Grace pulled all of the candy off of the frame and ate them. She had one of the popsicle sticks soaking in water to get the candy remnants off.

That was the beginning of the end.