How We Got Here: Grandma Lilly's Story
I have always enjoyed interacting with seniors. I believe we can learn a lot from their stories and insights into life. My wife’s grandmother, Grandma Lilly, was no exception to this. I met her when I was 13 years old and I am lucky to have had a lifetime to learn from the way she moved through life and the stories she told. When Grandma Lilly came to live with us, she was already suffering from cognitive impairment and Alzheimer’s. It was a hard reality for the family, but we were more than willing to adjust to give Grandma Lilly the life that she deserved. This required a lot of changes to our home and lifestyle to help Grandma Lilly navigate through the fog of her dementia and live a full and rich life.
Building Her Home
When building the mother-in-law suite into our home, I kept the logistics in mind to make it easier for Grandma to get around her space. It started with the idea of having her space be accessible through various entrances that led her in circular patterns through all of her essentials. It was important to build the space without dead ends in order to cut down on any confusion that might cause Grandma to panic. We used small steps for her to be able to get up and down to other portions of the house. I wanted her to get her exercise, but not fear that she might fall. Five steps up and five steps down with attractive handrails on both sides. It was simple, safe, and kept her legs active.
Keeping Her on Track
It was also important that we kept Grandma Lilly on a schedule that she could manage. This started with a simple schedule that she could remember and repeat with the least amount of interference. One of the hardest times of the year to keep a schedule is during holidays. There are a lot of disruptions to the family schedule from travel to visiting family. For someone with Dementia, it’s difficult to keep track of time, let alone the time of year. We put a large font digital clock with the day of the week, month and year. It even showed a sun or moon for day or night to help. In addition, we very specifically decorated our house seasonally to make it easier for Grandma to know what time of year it was and what holidays were coming. This helped reduce some of the confusion that can come from the disruptions in her schedule by helping her prepare for it every day with a simple visual cue.
Not only was her personal schedule important to keep, we also made sure her body stayed in line with her circadian rhythm, allowing her to sleep better and feel more refreshed when waking up in the morning. I included two sliding glass doors in her space to allow as much natural light into the room as possible. This was immensely helpful in keeping Grandma Lilly well rested and able to live her best life, not to mention, it helped us sleep through the night without Grandma waking us up at two in the morning.
One of the best things we added to the house was a bidet in Grandma’s bathroom. This simple device cost under $400 and gave Grandma the autonomy and dignity of cleaning herself after using the bathroom. While any one of us would have been willing to help her, there is something to being able to live life without others needing to see you at your most vulnerable that can add something powerful to your life.
Peace of Mind
We also added technology to the house that helped give the family peace of mind. One of the most important things we added to the house was called Piper, a moveable camera that allowed us to keep an eye on Grandma Lilly, even when we weren’t in the house. It came with sensors to let us know when she was leaving various doorways, gave use the ability to talk directly to her, and warn us if we needed to try and get back home sooner to care for Grandma. This was important for her safety, but also allowed the family to keep living our lives while still taking care of Grandma. The toll on each member of the family when caring for a loved one with dementia is immense and it was very important for us to take care of ourselves as well as Grandma. While it sounds expensive, Piper was surprisingly affordable, effective, and was a small price to pay for the peace of mind it gave us.
The most powerful part of all of this for me was the fact that Grandma never lost sight of the the fact that we did this for her. She used to say, “Greg made this space for me,” and I was so proud and happy that I could give that to her. The space meant so much to her that even in the fog of dementia, she remembered that this space was built for her. There is very little in this world that can match the amount of pride and joy this gave me and my family.
My family and I learned so much from our journey with Grandma Lilly. We were fortunate to have the means and expertise to care for her in our own home. Grandma Lilly ignited my passion even further for working with the Kemper family to create our Kemper House Worthington Community. I want this place to be a home for those who need it. I want to help families who are going through the rough, emotional ride that comes with a family member suffering from this terrible disease. I aim to make Kemper House Worthington a place where I would have felt secure in leaving Grandma Lilly and she would have loved. I want to bring that experience to each of our residents and their families.
I know that not everyone is going to be able to come to Kemper House Worthington. For those of you who are taking care of a loved one with Alzheimer’s or one of the other 125 forms of Dementia, I want you to know you are not alone and you can do it. It takes a lot of work and energy, but it is possible. The smallest things can make the biggest difference, from the natural light in the room, to the decorations, to the schedule they keep. I hope my experience can help you in your journey to care for a loved one and give back to the people who have given our world so much.