When Grandma came to live with us there were obvious changes that needed to be made in our home. We really could've used a Youtube video on how to Grandma-proof your home but guess what? Youtube wasn't around and we didn't know anyone personally that was caring for a loved one with dementia in their home. Now, in 2017, the average person knows that Alzheimer's is forgetfulness. The disease has gotten attention in the news and the medical world. However at the time of Grandma's diagnosis Alzheimer's was sort of a vague disease that even Grandma's doctor didn't give my grandfather and my mom too much information about. I think Grandpa equated it more with senility or mental illness and wanted to protect his wife from the scrutiny of others. His wife who had a degree in Science was no longer able to function at an adult level. She was closer to the level of a three-year old child and her cognitive abilities were fading fast. So did she have a disease or was she losing her mind? Even nowadays when some one has a brain tumor and is losing the ability to function they are met with more empathy and concern than someone who has a type of mental illness and is failing to keep up with the demands of life. For most people the logical next step to dealing with this type of situation would be to place the ailing parent in a nursing home. However, for my mom the nurse, placing Grandma in a nursing home was not an option. The decision to care for her mother-in-law in our own home was a matter of doing the right thing according to her own conscience.
When we brought Grandma into our home we were not set up for elder- care. What the heck was elder- care? Since my sister was working out of town and her upstairs bedroom had an adjoining bathroom Grandma took that room. Mom set up everything nicely for Grandma to make her feel at home. Dresses were hanging up in the closet and her other clothes were folded and put into a dresser. On top of the dresser were her favorite jewelry boxes. She had a large sliding door to look out to the spacious yard below. The bathroom was handy giving her some privacy from "us kids". We were all set! Or were we?
Initially, every day something new came up that we had to fix or adjust so Grandma would be safe and our home- life would be easier. Much in the same way you may need to prepare for a toddler living in your home, we had to make some changes for Grandma who was functioning at about a two or three year old level but was also elderly. Our shoes had to be cleared from the hallway so she wouldn't trip and fall. Railings were installed on the stairways and the bathroom was remodeled with a walk-in shower that had handles and seats built in. There was also a drain in the middle of the bathroom floor in case Mom couldn't get Grandma into the shower at all and she had to wash her while she sat on a shower chair. Dad installed a latch on the outside of Grandma's bedroom door. To people not familiar with dementia it would seem cruel to lock your Grandma in her room but for us it was practical thinking and a necessary safety precaution to keep her from falling down the stairs in the middle of the night.
After making the physical changes to our home we also had to change our thinking and always be mindful of Grandma. When she went into the bathroom someone had to stand outside the bathroom door and make sure she was okay and then once she opened the door to exit we double checked to make sure her stockings had been pulled up and her dress was fixed. If she was walking around we had to make sure she didn't get lost and end up standing in a closet confused and in the dark. Every now and then she would get stuck someplace in the house and we'd hear her yelling "Where am I? Where am I?" and someone would go to the rescue. Once, when we had some relatives stay for a few hours while we were out, Grandma vanished. They looked around for her but it took them quite a while to find her in the corner of a bedroom hidden by a clothes rack. We had to routinely check around the house and make sure things were safe. There was a hatch staircase in her sitting room floor that had to be shut down every time someone came up those stairs. If the doors in the floor were left open it would be easy for Grandma to walk straight ahead without looking down and fall the entire flight of stairs to the office area below.
One of the major adjustments we made to accommodate Grandma living with us was arranging our schedules so that someone was home at all times to keep tabs on her. All of us were busy all the time. Like any other family we had our daily work obligations and appointments. At this point I was eighteen, living at home, working at an office as a dental assistant, cleaning for four regular clients and doing a correspondence type of post high school education. My younger siblings were doing junior high and elementary home education and my two older siblings were away working out of state. My mom was forty-eight, my dad was fifty-one, Grandma was eighty-four and Grandpa was eighty-six. Dad was away at work all week and Mom worked weekends. I was working a couple of days a week and my brother was also busy with odd jobs. There were music lessons, church, school related activities, social outings, all types of places we needed to go but who was going to be home with Grandma? I'm not sure we ever got used to rearranging our busy schedules. It was never convenient. It was always a pain in the neck to have to figure out who was able to be home and when. After a while Mom gave me an incentive to stay home and Grandma-sit and that incentive was called five dollars per hour.
Those were the Stage One changes we made. Gradually we learned to be a little more flexible, we worked together, and figured things out. Mistakes were made that could have been life-threatening but in the end nothing horrible ended up happening. Life was different that was for sure. We had all changed even from the start.
